Introducing “Author’s Journal”

I’m seriously thinking about writing a novel. Or novella. Or novelette. I’m not really sure about the difference but I think it has to do with word count. And since I don’t know how long the story is going to be I won’t know till it’s done.

It’s going to be a sci-fi story. It’s an idea I’ve had rattling around in my brain for many years. If it should happen to get published it would be my first published work of fiction. I’ve always said that I know how to tell a good story but I’m not so sure I’m any good at making one up. That’s what has kept me from writing fiction up until now.

I’ve only been at this project for about a week and it’s been an interesting journey so far. I’m a little bit concerned the story of writing the book is going to be more interesting than the book itself. But anyway I decided I wanted to write about the process of writing as I do it. Normally I would share such items on this blog but I don’t want to spoil my story before I actually get it published. If it turns out it doesn’t get published then I will put it online for free anyway along with the Journal of how I wrote it.

Author Andy Weir wrote his famous sci-fi novel “The Martian” which was later made into a hit movie with Matt Damon. He put chapters online for fans to read as he was writing it. Soon his fans requested he publish it in e-book format so they could read it off-line. He put it on the Kindle store and wanted to give it away for free but they wouldn’t let him. The minimum price he could put on it was $1. Eventually a publisher bought the rights to make a print version and he sold the film rights making a fortune. I don’t know that I want to risk that. So for now I’m not ready to share the story nor the story of how I wrote the story. But maybe someday.

I can however tell the story of how I wrote my previous published works. So that’s what I’m going to do in this new series is go back and talk about the other things I’ve had published (all of them nonfiction) because that stuff is already out there and it won’t spoil the story. Here is the first installment of my “Author’s Journal”. Or I suppose we take a page from moviemaking and call this “The Making of… whatever”.

Unpublished Fiction

Okay change of plan already. I said I’d never had any fiction published and that’s true but I want to talk about one piece of fiction that I wrote for a high school creative writing class. It’s the first thing I wrote that anybody ever had anything nice to say about and I was pretty proud of it so if we’re going to start at the beginning of my “career” as an author we need to start with the short story I wrote in high school.

I’m guessing it was probably my junior year at Northwest High School. My regular English teacher had a week or two off for some reason. It might’ve been my one teacher who took time off to get married but I’m not sure that was this particular time. I know I did have a teacher who took a brief leave and we had a substitute. I wish I could remember the name of the substitute but she was absolutely awesome. I remember discussing her with my friend and classmate Dennis Adams. We agreed that the reason it was a good thing she was a substitute teacher was it would’ve been a shame to share her gifts with just one class. She really had a way of bringing out the best in her students.

Anyway we had to write a short story. There is an adage that says “write what you know” and so I decided to write a bit of science fiction. That was 95% of what I read in those days (and still is).

I stole the basic premise of the story. My dad had told me he had read a story or seen a movie somewhere sometime where a guy got away with murder by stabbing someone with a sharpened icicle. The murder weapon had melted and evaporated leaving no trace of the weapon or fingerprints. I decided to steal that idea as the basis of my own little murder story.

I need to explain first that everything I know about writing short stories I learned from Edgar Allen Poe. Most notably from his classic short story “The Cask of Amontillado”. The complete story can be found at that link. The opening line of the story is “The thousand injuries of Fortunato I had borne as I best could, but when he ventured upon insult I vowed revenge.”

That’s the whole story in one sentence. Everything that follows is simply the details. It doesn’t explain who Fortunato was in any detail. It doesn’t say how he injured the author. It’s just the story of how he plotted revenge. He lured him into a basement wine cellar for a taste of amontillado wine. Then he shoved him into an alcove, chained him to the wall, and sealed up the alcove with bricks burying him alive.

This shocking and brutal ending is what most people remember about the story, but for me it’s that opening line that is so important. In one brief sentence he really told you the entire story. To me that is the absolute essence and perfection of the short story form. That’s what I wanted to go for.

So back to my semi-plagiarized sci-fi murder mystery. We were going to commit the perfect murder by stabbing a guy with an icicle. But why would we want to commit this murder? It is not exactly a crime of passion. You have to get somebody to a place where you have an icicle handy. You have to prepare it to a sharp point and keep it cold until you can do the deed. This clearly had to be premeditated and carefully planned. After all you don’t commit the perfect murder by accident.

It takes three elements to commit first-degree murder: motive, opportunity, and means. We had the means with the icicle. We could craft an opportunity. But what was the motive. Poe didn’t give one in his story. It was just an insult of some kind but we never learned exactly what.

Somewhere along the way I came up with the idea that committing the perfect murder was something that had been pursued ever since Cain slew Abel. Although I believe people are fundamentally good, there is always something inside us that tempts us to do violence against our perceived opponents. We’ve always been searching for the perfect murder. It’s one of those eternal quests like building a better mousetrap.

Wait a minute!

What did I just say?

My muse had spoken. I had my opening line. I had my hook that would tell the entire story in one sentence and draw you in to make you want to read more. I had my Cask of Amontillado opening line which read as follows…

“Man has always had two great ambitions. To build a better mousetrap and to commit the perfect murder. I have accomplished the latter on the man who accomplished the former.”

That was my entire story in one sentence (well actually three) but certainly one short paragraph. Somebody built the better mousetrap. The only reason you would want to kill such person is that somehow he cheated you out of that honor. So our perpetrator and victim were business partners. The “I have accomplished…” means the story will be told first person in the same way that Amontillado was told. Like amontillado it was a revenge story.

So I wrote the story. I already had my method to commit the so-called perfect murder with the melted murder weapon. Now I had to build the better mousetrap. That’s where the sci-fi elements came in. Our inventors used recombinant DNA (a big catchphrase in the 1970s for genetic manipulation) to create a virus that would be deadly to mice but harmless to any other species. Our victim and narrator were business partners. The business went downhill and went bankrupt. Then one partner started a new business and suddenly had a breakthrough that made him a millionaire for building a better mousetrap. Our narrator was certain that he had developed the idea previously but ran the business into the ground so he could start over and keep the profits to himself.

Apart from the big opening line, I had also learned the beauty and ingenuity of a plot twist. Something shocking at the very end of the story that gives the reader something unexpected. You grab them at the beginning. You lead them on a journey. You have to finish on a high note as well.

So I had our narrator standing on the steps of the church after his partner’s funeral gloating as the hearse pulls away. It’s still a cold winter day and a gust of wind comes along. He reaches to pull up the collar of his coat around the back of his neck and as he does so, and icicle breaks loose from the eaves of the church and slides down his back. The story then concludes with a newspaper item saying about our narrator had died of a heart attack on the steps of the church just after the funeral of his friend and former business partner.

The substitute teacher whose name I still can’t remember absolutely adored the piece. She read several excerpts from some of the best stories in the class but she started with mine. She heaped praise on the piece especially focusing on that opening paragraph. She said to the class “I’m going to read you this opening paragraph and I want you to guess which of your classmates wrote it”. She read the paragraph and at least three people identified it as mine. I don’t know what about their opinion of me lead them to identify me but I couldn’t have been happier.

Then she pointed out that I had misspelled “always” as “allways” and looked at me and said “You know better than that”. I didn’t have the heart to tell her I really didn’t 🙂 I’ve probably told the story before that several of my elementary school teachers exempted me from so-called “busywork” such as spelling drills and math drills because they thought I was so smart I didn’t need them. To this day I can’t spell worth a damn and I can add a column of numbers three times and get three different answers. God bless spellcheckers and spreadsheets.

My favorite substitute teacher concluded her review of my work by giving me a piece of advice which was “know when to quit.” She thought that the news clipping at the end was unnecessary. I guess I wasn’t confident that the reader would know that the guy who killed someone with an icicle was killed by an icicle. I’ve not really had much of an opportunity to apply that lesson but I’ve never forgotten it. Although the advice was “know when to quit” it really was in essence “trust your audience.” I try to do that.

At the end of the semester, they give you a folder with all of your homework in it so you can review your grades. But they want you to turn it back in so that you can’t sell your term paper to someone next year. I kept my copy of the story when I turned my folder back in. I don’t remember the name of the story. I’ve got that copy around here somewhere and if I find it I will post it online.

Even though the piece I’m working on now is going be longer than a short story, I still needed an attention grabbing opening line. It’s got one. I won’t spoil it for now. Not quite as good as the better mousetrap versus the perfect murder but still enough I hope it makes you want to read more.

In the next installment of this series I will talk about the various nonfiction things that I’ve written and have had published. Stay tuned.

Prison Break — Holiday Hospital Part 10 — End of the Series

In December 2016 I spent a month in the hospital with respiratory problems and getting a trach. The first half of the story was chronicled in a series titled “Pray That They Listen to the Man with No Voice” about my time in St. Vincent ICU. The second part title “Holiday Hospital” is about the rest of December including Christmas in St. Vincent Seton Specialty Hospital. I recently was going to share the story with a friend and realized that I had not yet completed the Holiday Hospital series. It’s been over three years since the events happened but I never did complete the story. So I will try once again to finish it up. This is part 10 in the “Holiday Hospital” series. Here is an index to all of the entries in this series.

Prison Break

In the previous installment of this story I told about the test that my dad had to pass by spending the night in the hospital with me and proving that he could handle my ventilator and trach issues. It had been a really rough night and neither of us had gotten much sleep but we had passed the test despite some minor mistakes. Theoretically all that had to happen was for the doctors or nurse practitioners to sign some forms and we would be on our way home. The respiratory therapist was planning on meeting us at my house to bring a bunch of supplies. We already had the new ventilator and will be taking it home with us.

Checking out of a hospital always takes longer than you think it should. You are anxious to get home and bureaucracy always moves at a snail’s pace. Over the years I’ve learned you just have to be patient and let the system go on its own pace. Here is a Facebook post I made at 6:50 a.m. Just as a reminder anytime you see this little Facebook icon is a link to a Facebook post related to when I’m talking about. [12/28/2016 6:50 AM]

Dad got me up and dressed and we began packing up a bunch of my stuff and hauling it out to the van. Unfortunately we hit a major snag. In theory my trach should be replaced once a month. For the first replacement it should be done by a doctor who would train my dad how to do subsequent replacements. We are describing events of December 28 and I had had the trach since December 7 so the soonest I would’ve really needed a replacement would’ve been January 7. But for some reason the powers that be decided they would not let me out of the hospital until I had a definitive appointment to change the trach.

I tried to convince them that it was not an immediate need. If they were so concerned about getting the trach changed why didn’t they just go ahead and change it right now if that was a prerequisite for me getting out. They didn’t really have anyone who was willing to do that. As I mentioned in previous installments there was really only one doctor covering the entire facility. Everything else was run by nurse practitioners and therapists and the doctor wasn’t available at the time.

They were trying to get in touch with my regular ENT doctor but he was on vacation over the holidays. The receptionist who booked his appointments didn’t know if he would even do that kind of thing in the office. Here is a Facebook video that I shot at 11:43 AM that shows me up and dressed and ready to go and basically telling the same story I just told in the past couple of paragraphs. In the video I said that I had had the trach installed on December 9 but it was actually December 7.

I impatiently roamed the halls almost all afternoon occasionally arguing with the case manager Michelle trying to get her to sign off on releasing me without getting the trach change nailed down. I even bribed her with a little 3D printed Christmas tree ornament which she really liked but it didn’t move things along any faster. [12/28/2016 2:02 PM]

Happy Holidays

While I was killing time waiting on my release from prison I managed to strike up conversations with some of the other staff. There were respiratory therapists and nurses just standing around the hallway in between doing whatever needed to be done. So I had some nice conversations with them. One of the people who I had seen every day was a woman who would sweep the rooms and emptied the wastebaskets. She was obviously a Muslim because she always wore a hijab headdress. I often wondered what it was like for her to work in a place where there were perhaps no other Muslims and everyone was going around wishing one another Merry Christmas. On several occasions, especially this one, I thought about saying to her “as-salamu alaykum” which is a tradition Islamic greeting that translates to “peace be upon you”. But I really didn’t know how it would be received and I don’t know any other Arabic phrases or words and I didn’t want to have her think I could actually speak Arabic.

A few months later I would have a respite nurse named Mohammed Tahir who became a good friend. We frequently had long discussions about religion. He was very curious about other faiths and had studied them on his own. I would answer his questions about Catholic Christianity and he would answer my questions about Islam. If I had had my experience with him I would’ve been much more open to reaching this woman with the Arabic greeting.

It Fell off a Truck

Among the things that they do for you as you are leaving the hospital is make sure that you have all of your necessary prescriptions. Just about everything that I was taking except for the new prostate medicine was stuff that I was already taking before going into the hospital. And if I missed a day or two of the prostate drug it wasn’t going to be any big deal. The one thing I was worried about was albuterol. It is a liquid that you put into your nebulizer to help clear your lungs. It comes a little plastic ampoules where you twist off the top and pour it into the nebulizer. I was concerned that I might need a breathing treatment before dad could get to the pharmacy and get that prescription filled. So we talked to one of the respiratory therapists and she was able to slip us a couple of ampoules of the medicine to take home with us. We said to her “I wonder where this came from? We just found it lying here.” She said “Maybe it fell off a truck and you found it.” We had a big laugh. Little did we know that filling that prescription was going to be more difficult than we anticipated so it was a good thing she got us a few free samples.

Free at Last

I don’t know what time we finally got out of the hospital but my notes say that we didn’t get home until 5 PM. We still had to meet the respiratory therapist at my house so that he could deliver the supplies. They arranged to get me a tentative appointment with my ENT doctor sometime in early January to change the trach. Unfortunately it was something like 8 AM which there was no way I was going to be there that early. A few days later I called to reschedule it at a more convenient time and we didn’t actually change it until January 12. And guess what… the world did not come to an end and I did not die because my trach was changed a few days later than scheduled. But I had wasted the entire day until they made arrangements for no good reason whatsoever.

As we were going out the door escorted by the case manager Michelle, she acted as though she had achieved some sort of victory. She had told us that it would take 2 weeks to get the ventilator arranged and I was being released from the hospital almost exactly 2 weeks after I entered. I explained to her that first of all there was no reason on earth the process should’ve taken that long. Also we had been trying to arrange the ventilator for five or six days back when I was still at St. Vincent before ever got to her facility. And that time had been completely wasted. Essentially we had to start from scratch when we moved to the new hospital. Furthermore there was absolutely no medical reason why I had to be in the hospital that long except for the bureaucracy of obtaining the ventilator and there was no reason that she needed to keep me in the hospital all that afternoon. So I didn’t acknowledge anything she did as a victory and I told her so in as nice yet firm as I could muster under the circumstances.

A Mountain of Supplies

As mentioned above, we got home about 5 PM. We had called the respiratory therapist Josh to meet us there and he arrived shortly after we did. He brought in boxes upon boxes upon boxes of supplies most of which we didn’t know how to use or even if we would ever need them. By the time he left they were piled high on our dining room table and all over the family room floor. We had no idea where we were going to store the stuff. He came back again the next day with even more supplies and eventually brought the high flow air compressor that I was going to use to humidify my trach when I wasn’t on the ventilator. As I previously reported in the end we never used that compressor very much and ended up getting rid of it after having to fight hard to get it in the first place.

Dad still had to unload my ventilator and all of my clothes, laptop computer etc. out of the van. I did a G-tube feeding and went to bed. We were both incredibly exhausted but especially dad because he had not slept well in the hospital with me the night before on that horrible Guantánamo Bay worthy cot.

The First Day Home

The first night at home was uneventful. Dad and I both got caught up on our sleep. The only problem we have was when we got me off of the ventilator the next morning we did not fully deflate the cuff in my trach and so I had a bit of difficulty breathing when he put in the talking valve. We eventually figured it out and I was able to breathe much easier. We had yet another visit from the respiratory therapist who brought even more supplies. We also had a visit from 2 nurses from St. Vincent were going to come for a half-hour a day a couple times a week to check up on me. I’m not really sure why we had them but in one incident they turned out to be useful.

I was able to get shaved again which felt good. We were not able to get all my prescriptions and as it turned out the nebulizer prescription for albuterol was going to be difficult to fill. Apparently you need some sort of special authorization for Medicare/Medicaid to pay for it. Of course the prescription was signed by either a doctor or nurse practitioner from Seton Hospital. I had no idea who they were. I didn’t recognize the name. We tried to get in touch with them through the case manager Michelle but we could not contact her over the weekend. Finally one of my St. Vincent nurses proved her worth that Saturday by getting on the phone with the pharmacist and reading him the riot act. She gave a real tearjerker scary argument saying that she didn’t want to be responsible if I went into respiratory arrest because I didn’t have my nebulizer medication. He finally relented and filled the prescription. As it turned out I did need a few treatments over the next several days but in the long term I rarely needed nebulizer treatments. I think that initial batch of albuterol lasted me over a year and I think we eventually threw some of it out because it expired and we got another prescription for my regular doctor. [12/29/2016 2:05 PM]


I continued to take notes about my day today progress from the time I got home through January and parts of early February. The story isn’t really interesting in retrospect so I’m not going through all of the detail that I did about the hospital stays. In summary here are some highlights of things I went through.

Typically if I needed to call dad while I was in bed and he was in the living room watching TV or asleep in the recliner, I would just yell really loud. When he was in the bedroom I had a buzzer that I can push and it would ring the alarm in the bedroom. But when I was on the ventilator, I couldn’t call at all by voice. So I had to modify a wireless remote that I had built for the living room to include a buzzer like the one we had in the bedroom.

After spending the entire month in the hospital using a spit cup with a lid and a straw in it, we decided using a regular glass tumbler with no lid and a straw was a bad idea. Dad got some plastic cups that he found in our cabinets that had been left over from some event my mom had hosted years ago. We couldn’t find lids that would fit so I made them out of ninja flex plastic on my 3D printer. I still use plastic cups with 3D printed lids to this day.

I had a follow-up doctor appointment with my family doctor, my pulmonary doctor, and my ENT who trained us how to change the trach. He changed it with my dad watching and then asked dad to remove it and put it back in again while the doctor watched. It all went very smoothly. However a month later when dad tried to change it on its own, we had great difficulty getting the old one out and the new one back in. We got it eventually but it was very difficult and clear the lots of blood. This continued for several months so I made another appointment hoping that he could show us what we were doing wrong.

The doctor sort of looked at us funny and you could tell he was thinking “Didn’t we are ready show you how to do this?” When he went to take out the old trach, he had the same difficulty getting the old one out that we did. When he tried to put in the new one, he could not get it in at all! I was so happy that he was having the same difficulty we did. He finally started probing around my opening using the Yankaur and discovered that my opening was not straight in. It actually slopes downward slightly. So then he tried putting in the trach again but this time angling it downward. It popped right in with little difficulty. Dad and I continued use this method. Since dad passed away in February, my sister Carol has been changing the trach on a monthly basis and it works okay using this downward angle method. I’ve had some trach failures at inappropriate times. The balloon that blows up the internal cuff got damaged and would not inflate. The worst time once the night before my dad’s funeral. I could not put on the ventilator and had to try to sleep without it. I got about three hours sleep and then had to go deliver the eulogy for my dad which you can find here. Other than that we’ve had few problems with the trach these past 3 years.

For the first several weeks I had lots of problems with my back brace not fitting very well. I also had problems with my hips. I just wasn’t used to sitting up in my wheelchair all day every day. Over the course of the next months things began to slowly get back to normal. However some days I had to go back to bed early. While it is possible to do a G-tube feeding in bed, in theory you need to be propped up at an angle for at least 30 minutes after a feeding. Otherwise you risk reflux and aspiration. So we made the decision after all these many years to finally get a hospital bed. That way if I needed to go to bed early, I can still do my late G-tube feeding and prop myself up. It took about five tries to get the equipment provider to get the proper paperwork to my doctor and back again. When we finally got the bed it was not fully automatic as we had requested. It did have a motor to raise and lower the head and feet but it did not have a motor to raise the entire height of the bed. We could have paid the difference in price out of pocket because Medicare/Medicaid would not pay for the fully automatic version but we didn’t discover that until the guy actually delivered the bed. We just decided to live with it as it was. You could manually crank it up or down so we just adjusted it to the height of my old bed and left it there.

As I had speculated, my home health aide Riah had moved on to different clients so we had to train some new people. But they didn’t last very long and eventually we got Riah back again. She continued to work here for nearly 3 years but had to quit a few months ago because of back problems. She hopes to return to work someday and we will welcome her back. We really became very good friends over the past several years and I miss her a lot.

I could fill up a dozen more blog posts about the process of recovery after this incident. It took a long time for me to get back to something similar to my previous normal. Among the things that concerned me was my ability to go out with friends like Rich and Kathy were have friends like the Byram’s or the Brake’s stay with me while dad went to the doctor or did other things. Eventually I got over my concerns and trained them all how to suction my trach and how to do G-tube feedings. I got to the point where I was pretty much back to normal. I thought perhaps my days of going to evening events were going to come to an end but I did eventually attend 2 great concerts at the Deer Creek Music Center with my sister Carol. We also continued to go to hockey games at the Fairgrounds Coliseum but normally try to do afternoon games so it’s easier on me. I continue to go to the movies regularly with my friends Rich and Kathy and we recently saw the final Star Wars film completing a tradition that had lasted 42 years. We have seen every Star Wars movie together (sometimes multiple times) except Rogue One which was playing while I was in the hospital.

The story of my dad’s failing health in 2018 and his death in February 2019 could fill many many more blogs. I’m not sure if I’m up to reliving all of those events. In May 2019 my friend Barbara Alkema and her son Josh moved in with me. That kept me out of a nursing home. My health has deteriorated in the past few months and that has been a big adjustment.

So life continues to send big challenges my way and I do my best to deal with them as they come. I did seriously dedicate myself to documenting the assistive technology such as my iOS switch control and ultimate remote that were so valuable to me in the hospital. I have a new appreciation for what it means to not be able to speak.

Overall the decision to have the trach has kept me alive much longer than I could have without it. It was a good decision to get the trach. It’s allowed me an excellent quality of life and I’m grateful that things like the Passy-Muir speaking valve were invented so that I can continue to be a person with a very strong voice.

The End

Training Day — Holiday Hospital Part 9

This is the ninth in a multi-part blog about my 2 week stay at St. Vincent Seton Specialty Hospital. It’s been several months since I added to this series because I’ve been busy doing other things. However it’s time to make a big push and finally finish the story. There are other major events happening in my life right now so I need to put this behind me and move onto the next chapter. Here is an index to all of the entries in this series.

Training Day

We are now down to December 27, 2016 and this was a banner day that we had been waiting on for a couple of weeks. The respiratory therapist from Home Health Depot was coming to visit to show me all of the equipment we had been waiting weeks to get. He needed to train Dad and Carol on how to use it. Also present were 2 nurses from St. Vincent were going to be visiting me from time to time once I got home. I’m not really sure why they needed to be there since theoretically they should have known how to operate all of this anyway. 12/27/2016 7:30 AM

The therapist was a really nice guy named Josh who not only delivered the equipment and trained us, he continued to be our representative for many months. In the first week home he made several visits which eventually tapered off to a monthly visit where he would download data from the ventilator, perform preventive maintenance, and bring us additional supplies.

Josh later went on to do respiratory work in a hospital and was replaced by another guy. We continued to have good people serve this role of the monthly visit to check the machine and to bring us supplies. At one point Home Health Depot sold its business to a company called Lincare which is a terrible company to work with. We ended up switching to a different company called Aerotech and we get good service from them to this day.

The demonstration and training started off with a ventilator called a Trilogy which from what I’ve learned is one of the most popular small portable ventilators available. I had already done some research about it on the Internet. It’s pretty versatile in that it can be used as a ventilator, CPAP, or BiPAP. It has a backup battery that will last several hours in case of a power failure. It comes a rollaround stand. Just below the ventilator is a humidifier device. It is a small heater that heats up a clear plastic chamber with a metal plate in the bottom of it. You fill the chamber with distilled water and a hose coming out of the ventilator blows through the chamber picking up heat and humidity before going through a hose that connects to your trach.

The ventilator that I had been using in the hospital had 2 hoses coming front it. One was to push the air in and the other let me exhale. They connected to a small Y connector right before they connected to the trach. This ventilator only had one hose. To allow you to exhale, it had a small connector that they call a “whisper swivel”. It is a swivel connector so that the hose doesn’t get twisted but it also has a small gap in it that allows air to escape. If you didn’t have some way to vent your exhaled carbon dioxide you would just keep re-breathing that same gas and would get carbon dioxide poisoning. It’s similar to the tiny hole in my CPAP mask which allows me to exhale. I later learned why it’s called “whisper”. A few months ago we tried out a different type and it made a lot of noise. We stuck with the quiet version.

Jumping ahead in the story a bit… This relatively minor different between the ventilator that I had been using and the one I was going to continue to be using was a bit disturbing the first night. Exhaling felt significantly different. I really wish they had brought the equipment in sooner so that I could get accustomed to it before I left the hospital. As it turned out, the difference wasn’t really that much once I got accustomed to it. But it was a little bit scary the first night when I noticed how it felt different. I wasn’t immediately sure how I would adjust.

The next piece of equipment was a suction machine. This was one of the things that had concerned me the most. Not only was it going to be handy when I needed to spit in the Yankauer, it was also going to be necessary to suction the trach with a catheter. I was concerned about how portable this machine might be. As it turns out it was going to be fine. It fits nicely in a padded cloth case are little larger than a sixpack cooler. It has battery power as well as plug-in. Although it was a little bit larger than I wished it was, I was sure it would work and keep me mobile to go places like visiting family or going to the movies. I have seen other models that were smaller and more portable than this one but I’ve not taken the time to pursue them. This one is working out okay nearly 2 years later.

I was also going to get a small air compressor pump that would provide enough air for a nebulizer treatment. I have been getting these treatments every six hours around the clock. I knew I wasn’t going to do the treatments that often but I wasn’t sure how much I was going to need them. As it turns out I really only need them on as needed basis. I’ve probably only done 8 or 10 of them in the past 20 months.

The one missing piece of equipment was a high flow air compressor that would provide humidity to the trach when I wasn’t on the ventilator. This compressor would use the same humidifier as the ventilator. As I mentioned before, all of the time that I was in bed they insisted I stay on humidified oxygen that would blow into a cup that fits over my trach and talking valve. When I was sitting up in the wheelchair in the hospital I would get off of the humidifier and some days that was okay. However other days I could feel myself drying out thus creating some congestion. In some respects being connected to a humidity source was a kind of dual edged sword. If I became dependent upon it, it would not only restrict my movement away from home but it would also tie me down to one location in my house. On the other hand if it was something I really needed, it was the one thing that wasn’t being addressed despite all of my questions. The respiratory guy from Home Health Depot assured me that he could get me the compressor. All they needed was orders from the doctor that was going to be easy to get.

I’m going to jump ahead and tell the rest of the compressor story out of sequence. While all of the other equipment was reasonably sized and portable, this compressor is a monster that weighed a ton. It was about 2 feet long, a foot tall by about 8 inches deep. It was also very loud compared to the other equipment. For the first couple of weeks, my daily routine was I would get off of the ventilator very early in the morning when Dad would get up about 7 AM. I would then go on the compressor/humidifier until I would get up and dressed and about 10 AM. On rare occasions I may have put it on when I went to bed at about 9 PM and use it until 11 PM when I got on the vent. But eventually I found that it wasn’t necessary at all. It turned out that getting rid of the device was as hard as getting it in the first place. We had a choice of either getting the doctor to rescind his orders or to sign a document saying we were no longer using it against medical advice. Because it was going take a special trip to the doctor just to get those orders changed, at one point I finally just told them to take it and we would sign the AMA form. We made this move when we transitioned from Lincare to Areotech.

I did try one other humidity device. There is a small fitting that you can put on your trach called an HME or Heat and Moisture Exchange device. It sometimes is referred to as an artificial nose because your nose warms and humidifies the air you breathe in. I previously discussed this in an earlier installment. We did end up trying them out and I used them occasionally but not very often and not recently. I still have a huge box of them.

Overall the training went very well and I was satisfied that I was going to get the equipment I needed. Here was my Facebook post from that afternoon which expresses my great relief that we were getting closer to sending me home. 12/27/2016 4:03 PM

I stayed in bed that day and got caught up on some other things. Among them I finished editing and posting a blog entry that was top 10 stories of my life for 2016. Here’s a link to that entry.

Top 10 News Stories in My Life for 2016

The other fun thing that happened that day was that I reconnected with Brady Hansen. He was the medical student who had helped care for me when I was in the ICU. I forget the details of how he tracked me down. I believe I had left notes in the ICU for the staff with links to my blog and/or Facebook page. Anyway I got email from him and he had begun reading my blogs about the days in the ICU. He said it was great insights for someone who was about to be a doctor. I encouraged him to share with anyone he wanted. We connected on Facebook and I’ve exchanged a message or two with him from time to time since then. At one point he shared that he was very pleased that he had gotten a residency at a military hospital in California. He had previously been in the military and although it meant moving his family, they were still very excited about it.

The other thing I did that evening was I did some research about the speaking valve that I use. It’s called a Passy-Muir device named after the 2 people who invented it. David Muir was not a designer or engineer or medical professional. He was just a guy with muscular dystrophy who ended up on a ventilator like me and was frustrated that he could not talk. Here is a link to a Facebook post that I made that day about him. It contains a link to a biography page about him. I’m sorry to report he passed away years ago but thanks to his ingenuity I and people like me have a voice. I am greatly indebted to him. 12/27/2016 5:59 PM Click here to read a biography of David Muir.

Being Tested

The final item that we needed to check off before I would be allowed to go home was that Dad had to spend the night with me to prove that he was capable of taking care of me. They brought in a folding bed with wire springs and a rather thin foam mattress completely encased in slick black plastic. They covered it with a sheet that didn’t really fit very well. When you try to sit on it, the sheets would slide around on the slick plastic. The plastic covered mattress on the metal springs made a horrible squeaky noises every time you moved. Later the next day we suggested they ship it to Guantánamo Bay however even Dick Cheney might think it was too harsh of a torture for use on terrorists.

Dad and I were both pretty miffed that he even had to do this. Dad came up with the idea that he was going to make the most of it. If patients in the hospital were entitled to three meals a day and I wasn’t taking advantage of that because of my G-tube, he tried to talk them into bringing him a breakfast tray in the morning as if he were a patient. I tried to tell him he wasn’t going to get very far with that request but he made it anyway. As I expected they were not too keen on the idea and instead told him what hours the cafeteria opened in the morning.

The respiratory therapists from the hospital were in and out that afternoon and evening. They couldn’t help themselves but to play around with the controls and menus on the ventilator even though they’ve never seen one like that before.

In the hospital I had a nurse call button but I’ve spoken about extensively in previous blogs. But during the night, if Dad was going to take care of me, I didn’t want to call the nurse. I needed to call Dad. So we had to bring my call buttons from home. It’s a little Arduino based gadget connected to an X-Bee radio system. It sends a wireless signal from a box in my bedroom to a box in Dad’s bedroom. His box has a loud buzzer on it. So even though we were in the same room, because I can’t talk with the vent on, we needed both boxes so that I could buzz him.

I was concerned that because the buzzer is very loud that it would disturb the other patients or cause the nurses to come running. I wanted to close the door on my room but they said it was against policy to have patients room door closed. We had to leave it open a crack.

Dad had no trouble getting me on the ventilator so we settled down for the night. Every time Dad made the slightest movement his terrible bed made all sorts of squeaky noises. Dad is always a restless sleeper. He tells me that at home he wakes up in the middle of the night with the sheets or covers balled up. With the sheets sliding around on the slippery plastic, it was a wonder he was going to have any sheets at all.

When I’m in bed, they insisted I be connected to an oximetry and heart rate detector. If my oxygen level or heart rate drops below certain levels it rings an alarm. Whatever the default setting is for the heart rate, my sleeping heart rate often goes below that. We’ve been adjusting the level so that it doesn’t trigger so easily. But every time I take the device off and put it back on when I get up in the wheelchair, it resets the defaults. So in the middle of the night, my heart rate went low and the alarm beeped. Dad thought it was me pressing the call button. So he got up trying to ask what I wanted. I had to use my message board with him pointing at various things to try to figure out why I called him. I didn’t have an item on the board saying “I didn’t call you”.

We eventually resorted to taking me off of the ventilator temporarily and putting my speaking valve back in. Then I was able to explain to him what had happened. I don’t recall if we got the nurse or the respiratory therapist to reset the trigger level on the heart rate monitor or not. In the process of taking the off of the ventilator, the ventilator alarm started ringing and we had difficulty figuring out how to reset it. That drew the attention of the respiratory therapist.

It was a wonderful woman about 50 something years old who was my favorite of all the respiratory therapists. I’m embarrassed to say that I don’t for certain remember her name especially because I had grown so fond of her. I guess I didn’t put her name in my notes because I thought that I would never forget her. As I said she was my favorite of the entire two weeks and as you will see played a vital role in getting me out of the place. I’m going to call her Shirley because I know that wasn’t her name and I don’t want her to get in any trouble over the rest of this story.

I don’t recall the exact sequence of events that followed. Shirley was in and out a couple of times. We had explained to her how we got the alarms mixed up. She helped us get everything reset on the ventilator the way it should be.

Somewhere along the way of this entire process of getting me off and on the vent, Dad made a mistake. He made a mistake that we had discussed extensively over a period of days before we ever got to this overnight test. It was the only mistake that you could make with the ventilator that was potentially dangerous so we had discussed it thoroughly. But in the middle of the night when we are both half-asleep or had been sleepless all night as he had been, it’s easy to make mistakes.

The trach has a balloon-like device called a cuff that you have to inflate with air using a small syringe. It cuts off your upper airway above the point of the trach so that when the ventilator blows air into the trach, it doesn’t blowback out through your mouth and nose. The danger is, if you put the talking valve back on the trach without first deflating the balloon, you can’t breathe. In this case Dad was getting ready to put me back on the vent and he inflated the balloon before removing the valve which has the same bad effect. If left there too long it could kill me. As I said, we had discussed the situation thoroughly. We knew we couldn’t guarantee that we would never make that mistake. But we both convinced ourselves that if it happened, he would see that I was in distress and immediately remove the valve allowing me to breathe.

We really didn’t think we would end up making this mistake on the first night. But when it happened, our contingency plan where he would notice my distress and do something about it would have worked perfectly. In fact he was just about to reach to remove the valve so that I could breathe. But there was a problem… Shirley was there. She witnessed it all. And she quickly grabbed the valve before Dad could.

It was as much my fault as it was Dad’s. Shirley was on her way out the door and I thought something else I wanted to say to her. I don’t remember what it was. So I had not noticed that dad was inflating the balloon until it was too late and once it was inflated I could not talk to stop him. If we had been alone, I would not have been distracted and would have reminded him to remove the valve before inflating the balloon.

We were there that night to prove that Dad could handle taking care of me by himself. But when the alarms went off on the vent we had difficulty resetting them. And in the process of trying to get me off of the vent, we made a very serious (potentially fatal) mistake. I knew I was okay the entire time. But what scared the crap out of me was that we had failed the test. I was worried they would not let me go home.

Somehow I managed to get to sleep despite my worries. My estimate is that night I may have gotten five hours sleep. Dad thinks he was lucky if he got three. It was sometime around 5 or 6 AM that I told him to get me off the vent. I knew he had had a terrible night and suggested that he go down to the family lounge down the hall and tried to get some rest in a recliner chair or sofa there. He said that the furniture in that room was no good and he wouldn’t be able to get any rest. We would just have to tough it out the rest of the day.

Then we discussed what we needed to do about Shirley. I told Dad that we needed to explain to her that even though we made some mistakes, we had planned for these mistakes and that we would have been okay without her help. He agreed that we needed to say something to her. Her shift change was at 6 AM so Dad stuck his head out the door and kept his eyes open for her. He flagged her down and we invited her in to talk.

I said approximately the following… “We need to talk about what happened last night. The whole purpose of Dad being here was to prove that he could take care of me on our own. But we had some problems last night that you helped us to resolve. I want to describe to you from our perspective what we think happened last night. When the alarms went off on the ventilator, we had a little difficulty figuring out how to turn them off. The one on the vent is easy. But the one on the humidifier heater is different. Even if you fix the problem, it still keeps beeping until you hit the reset. We’ve got all of the paperwork and instructions here and we would’ve figured out how to reset it eventually. So while we appreciate you helping us out, we are confident we could have handled that part on our own.”

Then I continued with the bigger issue… I said “The other thing that happened last night was that Dad inflated my balloon without removing the valve first. We had talked about this possibility extensively prior to this. We had both convinced ourselves that if we made such a mistake that we would recognize it quickly and we knew exactly what to do to fix it. It just so happened that you were here and fixed it first.” I also explained how I had gotten distracted and did not warn him what was going wrong. I explained if we had been on our own, I would have been more focused and it would have never happened in the first place.

I concluded by saying “From our perspective, that is what happened. We could’ve gotten through all of that on our own. From a different perspective we recognize that it seemed like we didn’t know how to operate the machine and that at one point Kenny nearly killed Chris.” I kind of snickered at that point and she responded by letting out a big laugh.

I went on to say that I realized she was a professional with a responsibility to do what she thought was right. I was not going to ask her to keep this information quiet. “You’ve got to do what you feel is right under these circumstances. This was a test to see if we could handle this on our own. From our perspective we are capable of doing that despite what you saw last night. I just wanted to share with you our perspective on the events and we trust you will do what you think is in our best interest.”

She was totally cool about the whole thing. The first thing she said was that she and every respiratory therapist she had ever known had made that exact same mistake but had only done it once. She said when that happens and you realize it and you fix it, it scares you so bad you know you will never make it again. So you guys have already had your scare. She went on to say she understood what we were saying and that she had every confidence that we would be okay on our own.

If I could have, I would have jumped up out of bed and kissed her full on the lips. 🙂

Hell, I already had kind of a crush on the woman before all of this. That night she saved my life… not by pulling the valve so I could breathe. She saved it by believing in me and Dad and letting us move forward with leaving the hospital and getting on with the rest of our lives. I can’t begin to describe how much she meant to me. She was so genuine in her explanation that I’m not really sure I needed to make the speech I made. Whether or not my words convinced her is irrelevant. In the end, she said nothing and we were able to go home the next day.

Over the past 20 months since then I think we may have done it twice more. In both instances it took less than 5 seconds to realize mistake and fix it. We were right in speculating that we would make the mistake from time to time and we were right that if it happened we could fix it without putting me in any serious jeopardy.

Having passed the necessary test and survived the night. They agreed that I could go home that day. But getting out of a place like that is never easy. Scofield and Burrows on the TV show “Prison Break” have gotten out of prison easier than I did getting out of the hospital. Details in the next installment.

Frampton Comes Alive Again… And so Do I

Last Friday I went to Deer Creek Music Center with my sister to see a concert featuring The Steve Miller Band and Peter Frampton. It was the first concert I’d been to in 2 years and the first evening event I had ever planned since my hospitalization in December 2016. This is the story of my decision to risk going to the concert despite my concerns about stamina. I talk about what the concert meant to me in light of my health risk and additionally as a nostalgic look back at some of my favorite music from the 70s.

Concerns Over My Stamina

There were lots of other concerts and activities over the past 18 months that I would’ve liked to have seen. Among them Lady Gaga, Billy Joel as well as numerous other hockey games, movie opportunities, and church events. Since I’ve been on a trach and my health hasn’t been all that great the past year and a half I just didn’t think I would have the stamina for a late night event. I’ve also resisted the opportunity to go back to teaching class at my church because I don’t want to make commitments to be somewhere when I’m not sure it’s going to be a “good day” or a “bad day”.

In the months following my hospitalization it was not unusual for me to have problems with my back, hip, or other issues that would send me to bed in the early evening or even sometimes in the afternoon. Although I have proven that if I take my suction machine with me I can safely go to daytime events such as movies or afternoon hockey games, sometimes I have a really bad lung day that can require me to be suctioned as frequently as every 30 to 45 minutes.

Even on a good day stamina is an issue. I typically start my final G-tube feeding at about 8:30 PM and go to bed immediately afterwards. I watch TV until about 11 PM when dad comes in and puts me on the ventilator. Although I used to watch a lot of the late-night talk shows, it’s not unusual for me to fall asleep right away after a few minutes of the evening news. I still watch the talk shows but I watch them on DVR the day after.

However in the past few months things of been relatively calm and stable. It’s been a long time since I had to go to bed really early. On a couple of occasions there have been family gatherings here in which I didn’t get to bed until after 10 PM and although I was tired, it wasn’t too bad. Of course it’s one thing to say I can stay up late when I’m here at home with family and can go to bed whenever I want. It’s something entirely different to spend major dollars on concert tickets, drive to the far northeast side of town, and tried to stay up till midnight.

I watched the concert schedule closely looking for someone that I wanted to see as a test case. They had to be someone worth the money and effort to try to go. But they had to be someone not too special that I would be horribly disappointed if I had to cancel at the last minute or perhaps worse yet that I would feel compelled to risk going even if I really wasn’t up to it on that particular day.

Let’s Go

When I saw that The Steve Miller Band and Peter Frampton were coming June 15, I thought long and hard about it and finally decided to go. I had discussed it with my sister Carol and she was on board. She had some health problems of her own in May but had recovered from those. She still going to have some follow-up surgery but not until late June. It seemed like everything was aligning just right to make this possible. There were other shows in July or August that I might have preferred to see but I was concerned the weather would be much too hot. Mid-June was more likely to be reasonable temperatures.

When I finally decided to purchase tickets, I was fairly certain they would be available at this late date. Neither of these bands are particularly hot superstars likely to be anywhere near sold out. Although you have to be a little bit picky because you don’t know what the availability of handicap seats will be, I was pretty confident I would find something.

My usual seats on the left side wheelchair section were booked reasonably full. The right side wheelchair section however only had one pair of seats taken and the rest was open. For some reason whoever bought those seats did not take the preferred location at the left end of the aisle which gets you just a tiny bit closer to the center and a better viewing angle. I clicked on the tickets and ordered them.

Much to my surprise, the tickets were over $100 each. Three or four years ago I had seen other 70s groups like “Yes” or “Journey” and only paid about $60 each. I had paid a little over $100 to see “Elton John” which was quite reasonable considering what a superstar he is. So apparently ticket prices have really gone up since the last time I tried to buy anything. I think you can still get lawn seats at Deer Creek for as little as $20 but that just doesn’t work for me in a wheelchair.

Although I usually like to sit on the left side because it’s easier to get to that section from the main courtyard of the venue, it turns out that the right side wheelchair seats are a better choice because they are constantly in the shade. Last time I went to see “Yes” it was over 90° and I really roasted. It was the hottest I’d ever been at a concert. There is a canopy over the seating area but as the sun sets, it shines under the canopy and almost right in your face until nearly sunset. I watched the weather forecast all week long. There had been a lot of rain the entire week. In contrast to the “Yes” concert, the “Elton John” concert was 65° and a constant rain. It was the coldest I had ever been at a concert. Even under a canopy you still have to get from the car to the seats. I have rain ponchos but they are a pain to use. Fortunately the forecast for Friday was consistently saying only a small chance of showers. Initially they said the high would be 85° which would be not too bad but by the time the concert came, the forecast had gone to 88° or 89°. Much hotter weather was coming in the days following. At least the humidity was not too bad.

Peter Who?

The official billing for this concert said “The Steve Miller Band” and “Peter Frampton”. That indicated that Steve Miller was the main act and that Frampton was the opening act. I was really more interested in seeing Peter Frampton than I was Steve Miller. That sort of figured into my strategy for picking this concert. I had concluded that if I got too uncomfortable or tired or had breathing difficulty I could see Peter Frampton perform, leave early, and not be that disappointed about missing Steve Miller. But unless you are as old as I am, you may be asking yourself “Who the hell are these guys?” Some of the following is my own remembrances with a healthy assist on dates and times courtesy Wikipedia at the following link.

Peter Frampton is a British singer, songwriter, and guitar virtuoso born in 1950. He has a bluesy rock style and a mellow baritone voice. He uses a “talk box” guitar special effect that is one of his signature sounds. He was a bit of a musical prodigy teaching himself to play guitar at an early age. He later took classical music lessons. He attended the same high school as David Bowie where his father was a teacher. His father was David Bowie’s art teacher. Later in life he actually worked with Bowie on several projects. He played in a variety of small bands in his early teens and then at age 18, he joined with Steve Marriott of Small Faces to form Humble Pie. After four studio albums and one live album with Humble Pie he started a solo career in 1971 and released several albums none of which had much commercial success. His 1975 album “Frampton” was certified gold but only made number 32 on the US charts.

Whenever someone has a hit song and is never heard from again, they are described in the industry as “A One Hit Wonder”. Among my favorite such artists are Janice Ian and her 1975 single “At Seventeen” or Zager and Evans 1969 hit “In the Year 2525”. In some ways Peter Frampton is a “One Double Album Wonder” rather than a “One Song Wonder”.

In 1976 he released a double live album titled “Frampton Comes Alive!” and everything changed. For me that album title had a double meeting. It wasn’t just that he had recorded a live album… It was as if he was just born himself because prior to that, I had never heard of him and neither had many other people. It was like it was a debut album. I can’t begin to describe the impact of that album. I was in college at IUPUI and EVERYONE was talking about it. The entertainment writers in the school newspaper went nuts over it. It was a phenomenal megahit.

According to Wikipedia, in addition to the success of the album, three of the songs “Baby, I Love Your Way“, “Show Me the Way“, and an edited version of “Do You Feel Like We Do“, were hit singles. The latter two tracks also featured his use of the talk box guitar effect. The album was recorded in 1975, mainly at the Winterland Ballroom in San Francisco, California, where Humble Pie had previously enjoyed a good following. “Frampton Comes Alive!” was released in early January, debuting on the charts on 14 February at number 191. The album was on the Billboard 200 for 97 weeks, of which 55 were in the top 40, of which 10 were at the top. The album beat, among others, Fleetwood Mac‘s “Fleetwood Mac” to become the top selling album of 1976, and it was also the 14th best seller of 1977. With sales of eight million copies it became the biggest selling live album, although with others subsequently selling more it is now the fourth biggest. “Frampton Comes Alive!” has been certified as eight times platinum. The success of “Frampton Comes Alive!” put him on the cover of Rolling Stone, in a famous shirtless photo by Francesco Scavullo. Frampton later said he regrets the photo because it changed his image as a credible artist into a teen idol. His baby face good looks and flowing shoulder length curly hair also contributed to that image.

That teen idol image was bolstered by his unfortunate participation in the cheesy musical fantasy comedy film “Sgt. Peppers Lonely Hearts Club Band” which featured Beatles music cobbled together into some sort of ridiculous story in which Frampton played Billy Shears and the Bee Gees played The Lonely Hearts Club Band. I read somewhere that the participants in the film were told that the Beatles had fully endorsed the project and Paul McCartney himself would appear at the end as Sgt. Pepper to song “Get Back” but it had all been a lie by producer Robert Stigwood to get people to sign on. Billy Preston who played piano on the original Beatles version of the song ended up singing the song instead. It also featured Steve Martin as “Dr. Maxwell Edison”, Arrowsmith as “Future Villain Band” and Alice Cooper as “The Sun King”. Check out the trivia page for the film for other interesting facts. It’s one of my favorite guilty pleasure terribly bad movies and was the first movie I ever bought on VHS tape when I first bought my VCR. I think I paid $10 for it in a bargain bin when VHS movies were typically selling for $40 in those days.

Although Frampton continued to record over the years, he has never really had anything close to the success of the live album. He did win a Grammy for his 2006 instrumental album “Fingerprints” (more on that later). But for the most part you only hear his old hit songs played on classic rock radio stations.

Today at age 68 he is bald, has gray hair, and although handsome he looks nothing like the baby face teen idol that he was at the height of his career. Fortunately his voice is still as smooth and mellow as it always was and his guitar skills are as sharp as ever.

Steve Who?

While I could tell you “Peter who” pretty much from my own memory except for some of the dates and details from Wikipedia, I would be much more likely to be among those who would ask “Who the hell is Steve Miller?”.

Just days before the concert I remarked to a friend “I’m not sure if I will know much of the music. Other than ‘Fly Like an Eagle’ I don’t know if I could name another song.” Going into the event, my feeling was almost like they were a one hit wonder as well. My friend said “You will recognize much more than that.” without explanation. So just to warm up for the concert, I went online and downloaded “The Steve Miller Band Greatest Hits”. Much to my surprise I found myself saying repeatedly “Of course I know that song… I just didn’t remember it was Steve Miller Band.” Songs I instantly recognized upon seeing the list were “The Joker”, “Jet Airliner“, “Abracadabra”, “Jungle Love”, “Take the Money and Run”, “Rock’n Me”. Others such as “Dance Dance Dance” and “Wild Mountain Honey” although not immediately recognizable were familiar once I heard them again.

Other than listening to this Greatest Hits album one time through and playing a couple of the bigger hits a couple of times, that was all the preparation I needed for the Steve Miller Band portion of the show. Although I remember these songs as hits and I really enjoyed them, they really don’t have the personal significance or nostalgic connotations that Peter Frampton’s songs have for me. They are just fun classic rock songs that would be great to hear live.

The band was formed in 1968 and has sold 80 million records. Steve Miller was inducted Into the Rock ‘n’ Roll Hall Of Fame in 2016. More details on the group can be found on their Wikipedia page.

Getting There Is Half the Fun

On a typical day I wake up about 8 AM and dad takes me off the ventilator. Using my laptop in bed I usually check Facebook, email, play some Candy Crush and maybe watch a little TV until 10 AM when my home health aide arrives to get me bathed, dressed, and up in the wheelchair. Although I wasn’t sure I would be able to sleep late, I asked her to come at 11 AM instead of 10 AM at least to give me one less hour sitting up in my chair and my back brace. I hoped that would extend my longevity. As it turned out I did not sleep in late but it was good to have that extra hour in bed anyway. I told my aide that I woke up humming the theme song from “The Muppet Show”. I was singing “It’s time to play the music. It’s time to light the lights. It’s time to get things started on the Steve Miller Band and Peter Frampton concert tonight“. She did her usual excellent job of getting me prepared and getting me comfortable. My back brace was quite comfortable that day although I did have a little bit of hip pain. I took some Tylenol at 4:30 when I did my dinner time G-tube feeding.

I tried to pace myself all day long and not do anything strenuous. I spent part of the afternoon using Google maps to try to find a good route to the Deer Creek Music Center in Noblesville. By the way I refuse to use their sponsor names. Initially it was just called Deer Creek Music Center but then the sponsors got involved. It wasn’t too bad when they were the Verizon Wireless Music Center. Then their sponsor was Klipch who makes speakers and headphones. I still don’t know how to pronounce that word. Now they are sponsored by Ruoff Mortgages which I am not sure how to pronounce either and I never heard of before. Of course I suppose the fact that I never heard of them is why they spend money getting their name on a venue.

I live on the northwest side of Indianapolis just north of Speedway. Deer Creek technically is in Noblesville in the far, far northeast side. The obvious route is to take I-465 around the north leg, get off on I-69 and there is an exit very near Deer Creek. But the traffic in that area especially during rush hour is horrendous. Deer Creek used to be out in the middle of nowhere but now is across the street from a major shopping mall and is surrounded by lots of other commercial development and apartment complexes. At one point the owners considered selling the place not because it was unprofitable to run an outdoor music venue but because the land values in that area had increased so much it was almost worth their while to sell it. I’m glad they did not sell it and close it down. It’s a great place to see a concert.

Google maps suggested we go across the center of town on 38th St. and then to Binford Boulevard which turns into I-69. Going through the center of town during rush hour didn’t sound like a good way to go. But I knew that the I-69 exit where you turn off to normally go to Deer Creek is very crowded plus all the traffic around the shopping mall. I scouted out an alternate route that would get us off of I-69 early at State Road 37. Then we could cut across at 126th St., 136th St. or 146th St and it would take us right to Bowden Road and to the back entrance of the venue. It’s a “VIP entrance” for people who have paid extra for premium parking but all you have to do is drive up and tell them you want handicap accessible parking and they let you right in. I had forgotten exactly where that parking was. The Google satellite map clearly showed it and you can see the traditional blue-and-white wheelchair logos painted into the parking places.

If you type in Deer Creek Music Center (or whatever they call it) into your GPS, it takes you to the main entrance. But I was able to label the location of the VIP entrance by typing in 14680 Bowden Rd. and marking it in my favorite places on Google maps. (Click to see)

The show was scheduled for 7:30 PM. Carol said she would be here at 5 PM and we planned to leave about 5:30 but she was here before that and we decided to leave a little bit after five. We made sure we had a print out of the tickets. We packed them in the bag with my suction machine which I would need if I had lung trouble. Carol had already called the venue to ask about the availability of a family restroom where we might go if I needed to work on my lungs. Fortunately my lungs were in good shape that day and we never did need to use the suction machine except to spit up some gunk one time.

On the way out, we drove by my church St. Gabriel which was having the first night of their annual festival. That’s another evening event that I used to attend from start to finish when I was in better health. I had been director of their poker tournaments for many years but the Festival committee decided a few years ago to cancel the poker tournaments (without asking me) and with my limited stamina I haven’t attended the festival in 2 years. But it was good to see that it was still a strong event. I had sent dad over earlier in the week to buy $100 worth of raffle tickets. (We didn’t win by the way).

Going north and then east on I-465 the traffic was not too bad but as we got further along it started slowing down considerably. I was watching our route on my iPhone using Google maps and the phone’s GPS. Normally your path is marked by a blue line. But when you get to a heavy traffic area the line turns yellow or even red. It even tells you how many minutes you’re going to lose on your ETA because of the bad traffic. Apparently it gets real time traffic updates which I had never seen before because I’d never used it in a heavy traffic area. It was very accurate compared to what we were experiencing.

Google Maps suggested we get off at US 31 and go north and then across 126th Street. We thought about getting off but it looked like once you got past 31 the traffic was moving again. There was a long line of stopped traffic at the 31 exit so we went on ahead. It turns out we should’ve followed Google’s advice. There was another big backlog at Allisonville Road. We waited our way through that and got off at 37 as I had planned. We then went up to 146 and across which was smooth sailing from there. I’m sure we skipped a lot of heavy traffic by taking my little shortcut but we might’ve done better to take Google’s advice and gotten off the highway sooner.

We easily got into the VIP handicap parking as expected. Although they are marked with the accessibility logo and there are plenty of available spaces, there are no extra spaces between the marked spaces to allow you to unload out of the side of the van. We were early enough that there were plenty of empty spaces and had no trouble unloading. Similarly on the way out no one was parked next to us. I don’t think that section ever did fill up.

One of the interesting features of that area is a facility I have never seen anywhere else and never had the opportunity to use. It’s a wheelchair accessible porta pot. It looks to be about double the size of a normal outdoor facility. It has a wide door and a tiny ramp. I’ve always thought it was great that they had one of these.

In times past when I was driving my wheelchair using my hand on a joystick, the long ride from the parking lot into the venue would’ve had me worn out and basically have been impossible. Carol would have had to drive the chair for me. The slightest bump or slope made it difficult for me to drive my wheelchair. But with my new wheelchair that I got just over two years ago, I operate it by joystick in front of my mouth. It’s actually much easier for me to use that system. I’m much more independent with the mouth control. My head sits solidly in the headrest. While riding in the car I also have a strap that holds my head into the headrest. While I don’t usually use it around the house, I decided to leave it on so it would be easier to drive over bumpy ground if necessary.

There is a small footbridge leading into the venue where you go up and down a pretty good hill. The courtyard is partially covered with cobblestones. Even the concrete and asphalt pavement areas have quite a few bumps and uneven expansion joints. Getting to the right side of the venue you also have to go up and down a pretty substantial hill as you cross over a tunnel where the equipment semis drive in to unload the concert equipment. I was able to drive the entire way by myself without any difficulty although I don’t think I could’ve done so without the head strap. Going down the hill and hitting a small bump would have throne my head forward and jammed the controls into my teeth. The strap prevented that as well .

The security screeners had no problem with my suction machine in the bag. They can’t really waive a metal detector wand over a mostly metal wheelchair so they generally just waive you through. I hope terrorists never figure that out. If they ever exploit that fact, they will never let anybody into a public event in a wheelchair again.

I was the first wheelchair to arrive in that section so it was no problem getting to the far left of the seating area where I wanted to be. I was surprised to feel that the pavement in the far left end of that section was sloping forward considerably. Fortunately I have a tilt feature of my wheelchair so I simply tilted my seat backwards a few degrees and I was sitting comfortably level. The rest of the handicap section seem to be level without any adjustment but I wanted that far left location for the best viewing angle. I had been in that section before many years ago but I don’t recall there being a slope. When Deer Creek first opened there was no accessible seating. You had to sit in the aisle on the main floor and of course when everyone stands up, you can’t see a thing. The new wheelchair sections added several years ago offer great views. There is a walkway in front of you where people are walking by constantly but it is not too disruptive. You can easily see over the rest of the crowd even when they are standing up. Here is a photo of the view we had as I posted it on Facebook

There was a very tall usher standing right in front of me as you can see in the photo. I had Carol go down and talk to him and asked him to step to one side once the show started because he was directly in my line of sight. He did so and I had no other problems seeing.

Carol also took a selfie of us and posted it on her Facebook page.

Technology Failure

Before continuing the story of the concert itself, I have to tell you about a piece of failed technology that sort of complicated things for me at the concert. I didn’t get as much use out of my iPhone as I had anticipated because of battery problems. Here are the details…

I have a bracket mounted on the left armrest of my wheelchair holding my iPhone, my Ultimate Remote Control 2.0, and a battery pack to power the whole thing. The Ultimate Remote has an IR transmitter for controlling TV, cable box etc. as well as giving me an alternative way to operate the mouse and keyboard on my PC. The device also has a built-in Bluetooth device that allows me to do iOS switch control on my iPhone. Basically I can operate my iPhone by pushing just three little buttons I hold in my right hand and not having to touch the screen.

The battery pack contains an Adafruit Power boost 1000 charger and a 4400 mAh Lithium-Ion battery. It’s a slightly modified version of a device I designed for the Adafruit Learning System called a “Printy Boost” because it has a 3D printed case. It provides continuous power to my remote and it tops up the charging on my iPhone if the iPhone battery starts to drain. For some reason this day it wasn’t keeping the iPhone 100% charged. I guess using the GPS and cellular data for the Google maps all the way across town was putting too much strain on the system. I don’t have a meter on my Printy Boost battery but the iPhone battery indicator said I was down to 60% by the time I got to the constant. I had Carol unplug and re-plug the USB connecting the phone to the backup battery. It began charging again.

Because there were no other wheelchairs in the section yet, I tried using an app on my phone to take a 360° panorama view of my seating area. I started up the app and began slowly turning my wheelchair in a tight circle. In the middle of doing that, my remote control started glitching and rebooting constantly. Apparently the battery did not have enough power to recharge the iPhone and to operate the remote control at the same time. Normally when the iPhone is up around 95%, the drain on the backup battery isn’t so much and it has no trouble operating the remote and topping up the phone at the same time. But at this low state, it was drawing too much recharge current and couldn’t keep up. I had to have Carol unplug the USB port and use the iPhone’s own battery and preserve my battery to operate the remote.

Later I disconnected the remote and shut off the phone just prior to the concert for about 15 or 20 minutes to save on charge. I also shut everything down between the two acts.

Jumping to the end of the story here, the iPhone completely died just seconds after The Steve Miller Band completed its most famous hit “Fly like an Eagle” which I was recording on the phone. I was just clicking to stop the recording when the phone died. I could have plugged it back into the battery but then I would not been able to use the remote to access the phone so it was completely useless. Fortunately that was the last song followed by an encore of two other songs and the evening was over.

On the way home I went ahead and plugged in the iPhone to the Printy Boost battery just to see if it would’ve charged. By the time we got home, the iPhone battery was about 70% charged, the backup battery was dead. I’ve got a whole shelf full of additional backup batteries at home. I’m never going to a place like this again without another backup fully charged waiting in my wheelchair bag just in case.

I plugged everything in overnight and the next day was anxious to see if that last recording of “Fly like an Eagle” had been saved or was lost. Unfortunately my Ultimate Remote wouldn’t work at all. It was giving me Bluetooth error messages. I ended up spending all of Saturday afternoon trying to un-brick the device. Operating it on low voltage had caused a major glitch. I tried refreshing my software that operates the box but that didn’t help. Then I discovered the infrared TV control portion quit working as well. It turns out that was because we knocked something loose trying to plug-in the USB cable to update the software. But that didn’t fix the Bluetooth. I had to do a separate refresh of the Bluetooth chip firmware. That required taking apart the box, installing a temporary jumper, going through several steps to reflash the firmware, and reassembling the box. It took me and dad all afternoon but we finally got it working. Of course when we reassembled the box, the screws holding it together were stripped and dad had to replace them with larger screws later that evening. While I had the thing plugged in to be reprogrammed, I made a couple of minor changes to the software I had been intending to make. The whole thing took most of Saturday just to get working and of course I had to do all of this without the benefit of the mouse control that the device provides. It’s not exactly how I planned to spend my Saturday afternoon. Anyway back to the concert…

Frampton Comes Alive… Again

Just prior to the start of the concert several of the radio personalities from WFBQ “Q-95” came out on stage to greet the crowd. They were sponsoring the event in celebration of 40 years of playing classic rock on the radio. Shortly thereafter Peter Frampton and the band came on stage.

My memory isn’t good enough to remember the setlist for the entire concert so I refreshed my recollection using a great website called which contains the list here. If you click on the song titles in the paragraphs below, it will take you to some YouTube videos of the songs. They are not my videos and they are probably in violation of copyright except for one or two that look official. However they have tens of thousands of hits on the video and have not been taken down as yet.

The show started promptly at 7:30 PM. The opening song was “Something’s Happening” which I immediately recognized as the opening track from “Frampton Comes Alive!” (Hereinafter abbreviated as FCA.) It’s a great song to start off a show. The chorus includes the lines…

“Alright somethin’s happening
Hold tight it might be lightning
Turn up the lights I feel like dancing”

In other words “It’s time to play the music. It’s time to light the lights…” The event I had been planning for months and had been hoping I could attend was finally underway. Frampton came alive again. I was there and I was a very happy camper.

The next song was “Lying” which was from his 1986 album “Premonition” which was his ninth studio album. I had never heard it before because I was unfamiliar with his later stuff but it was a good song completely consistent with his usual style.

The third song had a long guitar solo introduction that was unfamiliar to me but eventually resolved itself into the instantly familiar “Lines on My Face“. It’s a slow, bluesy number which was the 13th song from FCA. He started off with a long introductory guitar solo. I recorded about three minutes of it on my iPhone.

The fourth song continued with another FCA number with “Show Me the Way” which was one of his biggest hit singles. It included his famous voicebox guitar special effects and it really got the crowd going. I streamed a few minutes on it live on Facebook for my friends.

He then told the story of his album “Fingerprints” which was released in 2006. He said he went to the record studio and told them he wanted to do an all instrumental album. They thought he was crazy but they let him do it. He said “It was well received by people like my family members who each bought a copy. I think all total we maybe sold 7 copies. You can still buy a copy if you feel sorry for me”, he laughed. A couple of the people in the audience yelled out “I bought one” and he replied “Oh good… We were up to 9 now!” The audience roared. He went on to say that sometime later he got a couple of big envelopes in the mail announcing that he had been nominated for 2 Grammy awards. He thought it was a mistake but he went to the ceremony anyway. “Much to my surprise at the appropriate time they read my name as winning Album of the Year” then he added (as if someone in the band had prompted him) “Well Instrumental Album of the Year”. He talked more about the album and how he had invited other artists to perform with him on it.

The song he chose from the album was “Black Hole Sun” which is a cover of a song originally recorded by Soundgarden. He dedicated the song to Soundgarden songwriter and lead vocalist Chris Cornell who had taken his own life in 2017. It’s kind of a sad bluesy song and a great tribute to the late singer Cornell. The YouTube video I linked is probably one of the few legitimate videos I am linking. It is from a “Guitar Center” TV special on DirecTV posted by them.

By the way here’s an interesting YouTube video from one of my favorite channels called “12 Tone“. The guy who does the analysis draws little images as he’s narrating. He likes to draw little images of elephants for some reason but it’s an interesting animated way of describing his musical analysis. Check out the channel when you get a chance or specifically this video which analyzes Black Hole Sun.

Next on the list was a hard rocking number from FCA “I’ll Give You Money“. It’s not one of my favorite but I did recognize it from FCA and yet so upbeat after the slow blues numbers it was a good change of pace.

Between songs he told stories about how he wrote various songs. I don’t remember the details were when he told the stories between which songs. I do recall that two of his biggest hits were written when he went away to the Caribbean to write an album. He had three weeks to write it and spent the first two weeks partying with some other rockstar (I forget who) and he says he doesn’t remember much about those two weeks. But one of the songs he knocked out in one day during that third week was his hit number “Baby, I Love Your Way” which was next up on the setlist. The crowd sang along with him. It’s a very mellow easy flowing love song. I streamed about 2 minutes of it on Facebook for my friends.

He then told the story about an incident in 1980 when he was getting ready to tour Brazil. He thought he had lost all of his equipment in a cargo plane crash which tragically also killed three people. Among the losses were a treasured black Les Paul custom guitar that he was holding on the cover photo of “Frampton Comes Alive!” He had used it in his time with Humble Pie and throughout the early part of his solo career. He said then one day in 2011 he got an email with attached photos saying that the guitar had been found. It was returned to him. He said at the first performance after it had been returned, they put it on stage with a spotlight on it and it got a bigger round of applause then he did.

As he donned the guitar, I knew something big was coming so I quickly began recording on my iPhone. He shouted to the crowd “Are you ready?” And they replied with a loud “Yes”. He asked again louder “ARE YOU READY?” And they replied with a louder “YES!”

As I had hoped, the familiar opening guitar licks of “Do You Feel like We Do” radiated from the stage. It was my favorite cut from the original FCA album. The original version was the finale of that album and that version ran for over 14 minutes. It makes extensive use of the voicebox effects. It provides a brilliant exclamation point to the entire live album. It’s probably the track that I have played the most over the years. You can just feel the chemistry that he has with the audience in his live performance and for me it’s what makes the entire album so special. Literally for decades I have wondered what it would’ve been like to be there at that moment and hear that performance and feel the warmth and the excitement of such an amazing virtuoso performance. I wanted to know what it was like to “feel like you do” and now that long-held desire had become true for me.

In addition to brilliant guitar solos he also engages in musical battle with his keyboard player who is brilliant as well. There is back-and-forth interaction with the audience. The voicebox effects are brilliantly used. At one point he starts scatting into the voicebox and then says “I don’t know what I just said… mumbo-jumbo”. The audience went wild.

I took the opportunity while recording the song to turn around and pan the crowd because it interval part of the performance is the live audience. Unfortunately Carol missed part of it. About 10 minutes into it she let me know she was headed for the restroom. She return just as the song ended but she said that she could still hear all of it.

The entire extended performance lasted 18 minutes. That’s four minutes longer than the album version.

The online setlist says that the next song was “Four Day Creep” which is a song he did from his days with Humble Pie but was originally a blues song by Ida Cox. However the end of my recording of “Do You Feel like We Do” has the opening lines of “I Don’t Need No Doctor” which the online list says followed “Four Day Creep”. I think probably it was a medley of both songs. “I Don’t Need No Doctor” was also a big hit for Humble Pie but it was a cover originally recorded by Ray Charles. Whatever he played at the end in whatever order it was, it was just an afterthought compared to the amazing “Do You Feel…” number. There was no encore but really there was nothing else he could’ve done to add to what had just happened. The band left the stage at about 9 PM.


I posted a note on Facebook saying that Frampton had done 18 minutes worth of “Do You Feel Like We Do” and that Steve Miller was up next. During the intermission I had Carol turn off the iPhone and unplug my control box. I had no way of knowing how much power was left in the battery for the control box but the iPhone was down to about 20%. If I was going to record or stream anything of Steve Miller it was going to have to be minimal.

Part of the strategy of this concert for me was the idea that if I was too tired to see the whole thing, all I really cared about was seeing Peter Frampton. If I had to leave and miss Steve Miller, I would be okay with that. As it turned out I was feeling good. The heat had been no problem at all. I kept drinking water and never was uncomfortable from the weather. There was a nice breeze blowing and overall it was a very pleasant evening. I spent most of the intermission just people watching.

The crowd was about 95% people in their 50s or older. The younger people there were obviously with a parent or who knows perhaps grandparent. Carol spotted one woman wearing an outlandish blouse that was barely containing her big breasts. She had a couple of younger people with her. Carol said “If I was there with my mom dressed like that, I wouldn’t want to be seen with her.” Other concerts I’ve been to in recent years with 70s or 80s groups like “Journey” or “Foreigner” have had more young people because those groups have continued to attract new audiences. These guys were definitely just for the nostalgic old folks like me.

During the intermission, the personalities from radio station Q-95 returned to the stage and gave away some free T-shirts celebrating their 40th anniversary. They also sent someone up into the lawn seating area and picked someone at random to come take a seat in the front row. That’s quite an upgrade. I paid over $100 for my seats and I guess that the front row is probably worth twice that. Seats in the lawn I think go for $20. They told the crowd that there were plans that Peter Frampton would be back on stage to play a couple of numbers with Steve Miller so the Frampton fans like me still had more to come.

The intermission lasted about a half an hour and Steve Miller took the stage about 9:30 PM.

The Space Cowboy Steve Miller

When the astronauts first landed on the moon in 1969, the very first thing that Neil Armstrong did after uttering his famous words about small steps was to reach down, pick up a rock, put it in a bag, and attach it to his suit. They called the “the contingency sample”. Each of the other astronauts who first set down on the moon did the same thing. The reason was “What if we spent billions of dollars to send a man to the moon, something happened shortly after he arrived, he had to get back into lunar module and leave immediately and would have nothing to show for it?” So the very first thing they did was grab a quick rock just so they could say that they didn’t come back empty-handed.

With my iPhone battery and my control box battery both running on fumes, I decided to record and share with Facebook friends about one minute of the opening song even though I didn’t recognize the song itself. It was my version of “the contingency sample”. Although I was completely satisfied by the Peter Frampton experience, I didn’t want to come away without any memories of the main act.

My knowledge of The Steve Miller Band repertoire is even more limited than my Peter Frampton knowledge so I’m relying heavily on this list from to fill in the gaps of my memory and basic knowledge. Again each song title below contains a link to a YouTube video of questionable copyright compliance. Details on particular numbers are also provided by the following Wikipedia articles on the band and Steve Miller himself.

It turns out that the opening song was a blues number called “The Stake” which was on the Greatest Hits Album that I had downloaded but originally appeared in their 1977 album “Book of Dreams“. You might recognize it more by the refrain “Nobody loves you like the way I do”.

The next number was also from 1977 “Book of Dreams” and “Greatest Hits” titled “Swingtown” again you might recognize and more from the opening line “Come on and dance, come on and dance…”. It’s a very upbeat pop song that was also released as a single in 1977.

The third song on the list was the first really big hit that I instantly recognized “Abracadabra” from the 1982 album of the same name. Since this was the first song I really recognized that they played I decided to record a little bit of it for myself… again as a bit of a contingency sample. Miller sounds exactly like he did on the original recordings. His voice sounds like that of a 25-year-old instead of a 74-year-old. He did hit a sour note occasionally or his voice cracked once or twice but 99% of the time it sounded exactly like every recording they ever did.

Miller dedicated the next song to US military serving around the world. “Living in the USA” was from their second album in 1968. At one point he explained that they had been recording and touring since 1968 thus making this their 50th year performing.

Next on the agenda was “Space Cowboy” from their third album 1969’s “Brave New World“. This is not to be confused with their hit song “The Joker” which begins with the lyrics “Some people call me the space cowboy.” I was completely unfamiliar with this song.

This was followed up with a much more familiar hit song “Take the Money and Run“. I figured it was worth the battery to capture two minutes of that with my iPhone for future memory. It sounded great.

As promised, they brought Peter Frampton back on stage for 2 numbers with Steve Miller. Miller explained that he admired Frampton’s guitar playing skills especially on blues numbers. They got to thinking about what they called the “Blues Triangle” of Memphis, Chicago, and Texas. They wanted to play some blues numbers representative of those areas. The first was a cover of a Freddie King song called “Same Old Blues“. Frampton did the lead vocals and Miller and the band accompanied him. It’s a very slow, mellow traditional blues song. The YouTube video that I have linked when you click on that song title above was recorded just three days prior to my event at their concert in Evansville Indiana. By the way, if I get arrested for sharing 2 minutes of video live on Facebook with friends only, I’m taking a bunch of people like this down with me. 🙂 They shared an entire song publicly on YouTube.

The other song with Frampton was “Stranger Blues” originally recorded by blues legend Elmore James. It’s a much more upbeat blues number with a traditional blues sound to it. Miller had included it in his 1993 album “Wide River”. He did the lead vocals that night and Frampton accompanied. Even though I was unfamiliar with either song, they were great examples of classic blues and I enjoyed them a lot.

Next came a lively little country number called “Dance, Dance, Dance” from the 1976 album “Fly like an Eagle“.

Next up is “I Want to Make the World Turn Around” from their 1986 album “Living in the 20th Century“. I was completely unfamiliar with it.

Before playing the next song “Wild Mountain Honey“, Miller explained that it was from the early part of the 1960s which he described as the swinging 60s not that hippie 60s. But if there was ever a “hippie-like” song in his repertoire it would have to be this one. He told the story of the strange guitar he uses to play it. It has six control knobs instead of the usual three. It has three electric pickups shaped like lipstick tubes. And it has 19 strings. In addition to the usual six strings there is another section that is like a miniature harp. It has a purple fake alligator skin cover. The YouTube video linked in the song title is from a 2017 concert where he tells the same story. At our concert he did the same gimmick where he reflects the spotlight off the mirrored back of the guitar. Although I’m pretty sure he described the price of the guitar as $125 and other Internet sources have listed it as $125, this video says he paid $200 for it. The guitar is a combination electric guitar and electric sitar. It sounds like something George Harrison would’ve played during his Ravi Shankar period. Tell me it doesn’t sound like a hippie song.

Miller explained that at the start of their career they released five albums in 19 months! They ran out of titles so they just called the fifth album “Number 5“. They played a lively blues number from that album titled “Going to Mexico“.

Finally we had one of the major hits we had all been waiting to hear. The 13th song on the agenda was their 1973 hit “The Joker” from the album of the same name. I had to share this one on Facebook for a couple of minutes. It contains the famous line in the chorus “I’m a joker, a smoker, a midnight toker…”. Apparently someone about two or three rows behind me took that opportunity to light one up. A security guard walking by in front of me pointed his flashlight in their face and yelled at them repeatedly “Put it out”. You can hear the security guard in my video. I had expected to smell lots of smoke during the evening but I never did smell any. Carol said that she did. Of course the crowd went crazy over the song and I really enjoyed it too.

They followed this with a lively number “Serenade” from the 1976 album “Fly Like an Eagle”.

Speaking of which… “Fly Like an Eagle” was the next song. Somehow I anticipated that it was coming and managed to get a recording going on the iPhone missing only a couple of bars of the introduction. It was a phenomenal eight minute long version of their greatest hit song ever. It included a brilliant keyboard solo that I especially liked. The crowd was clapping and cheering throughout the entire song. Just as the song was ending and I was trying to click on the phone to stop the recording and everything went blank. My battery had died completely. I had no idea if that last song actually got recorded or was lost forever.

For a grand finale they immediately went into another major hit “Rock’n Me” from the 1976 album “Fly Like an Eagle”. They left the stage to thunderous applause and screams but returned quickly for an encore consisting of “Jungle Love” followed by “Jet Airliner” both from the 1977 album “Book of Dreams”.

During this final song they lowered down a giant disco ball from overhead at the center of the stage. Both Frampton’s and Miller’s shows were very short on special lighting effects. Neither of them had any pyrotechnics, lasers, or video screens. They did occasionally project a still image on the backdrop but this concert was more about music and not about fancy theatrical show.

The song was written in 1973 by Paul Pena but is recording was not released until 2000 because of a contract dispute. Steve Miller’s version is the only one most people know from the 1977 “Book of Dreams”. It’s a jumping rock ‘n’ roll song so it seemed really strange to have a disco ball suddenly appear during it. It did get everyone (including my sister Carol) up on their feet and dancing. She should be glad my battery had run down or I would’ve had video of that as well.

The Journey Home

The show ended and the lights came up. It was a little bit after 11 PM. I took one last drink of my bottled water. We put on my head strap and I drove out through the crowd. There’s always a big backup on the footbridge as everyone tries to leave at once but this time it wasn’t too bad. When we got to the car, no one was parked next to us so it was easy to load up. We didn’t spend too much time fighting the traffic to get out. Of course this wasn’t a big sellout so the crowd wasn’t that enormous.

Unfortunately they forced us to turn north on Bowden Road which was the opposite of where we wanted to go. With my iPhone battery exhausted we had to navigate our way around without the help of GPS or Google maps. Carol has all of that on her iPhone but she couldn’t operate it and drive at the same time. We turned east on 156th St. which is a dark two-lane road. We managed to zigzag South and East on other streets as soon as we could and ended up on 146th St. which is a four lane road. We then took the same route back home that we had taken going in. At that time of night of course there was no traffic.

On the way home we passed by St. Gabriel again just a few minutes after midnight. The festival was just shutting down for the night but there were still plenty of people there. When I got home I did a quick G-tube feeding and went to bed. I was in bed by about 12:30. Carol decided to stay the night rather than drive home late at night to Danville.

The next morning I discovered all the problems with my remote control box and as I explained earlier, I spent all day Saturday trying to recover it. When I finally got everything working, the first thing I did was try to see if my recording of “Fly Like an Eagle” had survived. Unfortunately I could not find it on the phone. I got on iCloud and began downloading the photos and videos on my computer. I only had the basic 5 GB free iCloud because I don’t use it much. After had downloaded everything and deleted it from the cloud and my phone, suddenly a new video appeared. It was the complete recording of the missing “Fly Like an Eagle”! Even if my iCloud account had been overflowing, I should have still been able to see the file on the iPhone directly but for some reason it did not appear until after I had cleaned out iCloud. My memories recorded from that evening are now complete.

It’s taken me over 2 days to research and write this blog. I titled it “Frampton Comes Alive Again, And so Did I” because it’s kind of a rebirth for me to be able to go to evening concerts like this the way like I used to. I missed a lot of good shows over the last couple of months. I had considered trying to get tickets for another show this summer. Steely Dan and The Doobie Brothers will be there this coming Sunday, June 24 but that’s too soon for me. I’m still recovering. Styx and Joan Jett will be here July 11 the day before my birthday but the weather will probably be very hot and I’ve seen Joan Jett just a few years ago. Foreigner will be here July 12 my birthday but I’ve also seen them a few years ago. Chicago and REO Speedwagon will be here in August but again the hot weather might be rough. I’m sure I will find something good to see. Perhaps something indoors will become available so I don’t have to worry about the weather. Also I can be home from Bankers Life Fieldhouse in a half hour rather than the hour trip to Deer Creek.

It did occur to me that by the time another good concert comes along that I might not be in as good of shape as I am now. If this turns out to be the last concert I ever attend, it certainly was a memorable one and would be adequately worthy to hold that distinction as my last.

Christmas Gifts — Holiday Hospital Part 8

This is the eighth in a multi-part blog about my 2 week stay at St. Vincent Seton Specialty Hospital. Here is an index to all of the entries in this series.

Big Surprise

In my previous installment I talked about going to a Christmas ceremony on December 23 but there were other things that happened that day that we ought to cover. I had a bit of a rough night so I tried to nap as much as I could in the morning. I spent some time finishing up the second installment of my blog about being in the ICU. Here was my early morning Facebook post. [12/23/2016 7:16 AM ]

I’m not sure whether it was by email or by a Facebook post that I got some amazing news. The FDA had approved a drug called Spinraza for the treatment of Spinal Muscular Atrophy which is the genetic neuromuscular disease that I have. SMA comes in about four different varieties. I have type 2 which is very early onset but only weakens you very gradually over your lifetime. Living into your 60s like I had was not unheard of but I was probably pushing the limits. However the more severe type 1 weakens the children very severely at birth and they are fortunate if they managed to live more than two years. In a clinical trial, this drug was so effective in not only stopping the disease may in many cases increasing the strength of patients, that they stopped giving the placebo to part of the participants. Given that this was a seriously fatal disease and they had already seen positive results, it would’ve been immoral to deny the treatment to the other participants.

Although the clinical trials only involved the extreme type 1 infants, the FDA had taken the unusual step of approving it for all varieties of SMA and all ages of patients. This was a treatment and not a really cure. Early results showed it to be effective in only about 40% of the patients. Later that number increased to around 50%. I had known for years that if they ever did come up with a treatment, it wasn’t what to do me any good. Over 60 years of the disease had done damage that cannot be reversed. For a variety of reasons I won’t go into here, I’ve not pursued the treatment. The major reason is that is unproven for older type 2 patients at highly unlikely to do me any good. The side effects of the treatment are not well known. It involves a spinal injection and with my severe scoliosis that would be either dangerous or impossible.

Still it was an amazing piece of news and a wonderful Christmas present. I put together the following blog item telling a long story about my relationship with SMA and a funny story about one of my former employers who was a geneticist who is a bit of an ass.

I’ve Got That One. It’s called SMA Type II. And now it finally matters!

Christmas Eve

For Christmas Eve I expected it to be an uneventful day. Dad was going to come and we were going to watch the Colts game. I had told Carol not to bring her grandkids to the hospital to see me because I knew they would be bored and rowdy. I had decided to take it easy and not get into the wheelchair today. Here was my early morning Facebook post.
[12/24/2016 9:45 AM ]

Fortunately nobody listened to me when I said don’t come and don’t bring the kids. Carol showed up with her daughter Alaina and grandkids Leighton and Keeleigh. Carol brought me a Christmas present that I have asked for. It kind of started out as a joke but actually it turned out to be a good idea for present. I had said “What do you get a guy for Christmas who has a trach? Of course the answer is scarves!” She got me a Colts and a Pacers scarf. There was a promise eventually we would get one for the Indy Fuel hockey team which we did eventually get. Here’s the live Facebook video of their visit at 2:13 PM.

Alaina and her kids did not stay long because as I predicted, they got a little bit rowdy. To my surprise, before Carol and the kids left, Karen and her boy Cole showed up for a visit as well. Here is the Facebook live video from 3:14 PM

My nephew Cole is a huge Chicago Cubs fan. When the Cubs won the World Series I built a special electronic hat for him. It has a strip of NeoPixels across the brim as well as a group of pixels underneath a 3D printed “C” for Cubs in the front. It runs off of an Adafruit Feather 32u4 BLE with a LiPo battery. You can control the pattern of lights using an app on your phone or tablet. Dad had brought it and left it in the car just in case we happen to see them. Unfortunately I could not demonstrate it because we ran down the battery playing with it. Here’s a video demonstration that I gave several weeks earlier on the Adafruit “Show-And-Tell”. My segment starts at about 5:35 into the video.

It turned out that the Colts lost their game and were eliminated from the possibility of making the playoffs. I spent the rest of the day working on a blog post about my Christmas card. If I wasn’t going to be able to mail out the Christmas cards, at least I could write about it and share the image with everyone on Facebook. I took time out to call my friend Judy and wish her Merry Christmas. Here was my final Facebook post of the day.
[12/24/2016 8:12 PM ]

Christmas Day

Christmas morning I put the final touches on my blog about my Christmas card. Usually I make a CGI rendered image using POV-Ray rendering software but this year for a change I took one of my old CGI designs, 3D printed it, and took a photo of it. Here is a blog post from my graphics blog with the details.

My 2016 Christmas Card: Reimagining a CGI image by photographing 3D printed models

I connected with my sister Carol via Skype and got to watch her kids and grandkids open Christmas presents that morning. I had hoped to do the same with Karen but we never were able to get together on that. I had a surprise visit from my friend Judy and from Fr. Paul. I had no idea they were coming so it was fun to spend time with them. I spent the rest of the day working on another installment of my blog about my time in the ICU. My only Facebook post other than the blog posts was the following note.
[12/25/2016 5:00 PM ]

In the end it was a much better Christmas than I expected it to be. I got to see all of the family that I usually see on Christmas plus visit from friends that I did not expect.

After Christmas

Because it was the holidays, they were still very shortstaffed. With Christmas falling on Sunday, people were considering Monday the holiday. Even the cafeteria downstairs was shut down. I was able to get up in my chair for over five hours. I got a visit from my friends Stu and Pat Byram which was fun.

While I was up in my chair, my throat got quite dry and my lungs got a bit congested. Dad was supposed to be learning how to do a trach suctioning but I had been doing so well that I didn’t really need one. He had done a couple of practices when there was nothing in my lungs to suck out. So when I got gunked up that day, Dad did his very first trach suctioning under “real world” circumstances where I really needed it. We did okay even though it maybe wasn’t the best one I ever had.

I had a talk with the nurse practitioner about taking me off some of the medication that they had put me on. I don’t recall what sort of extra meds I had been on but I didn’t really think I needed them anymore. We talked it over and she cleared it with the doctor and we cut me back to just my usual medication.

One of the meds I had been on for many years was Flomax which is supposed to help with prostate issues and to help you pee better. The warnings on that drug said do not crush it or chew it. It is a capsule that is only about half full of some sort of gritty powder. For months (perhaps years) I had been taking it by mouth and letting the capsule partially dissolve until I could smash it flat and swallow it. Many times the contents would come out into my mouth. Fortunately it did not taste bad so I had no trouble taking it by mouth. However under my new circumstances I wasn’t taking anything by mouth except plain water. So they had discontinued the Flomax and put me on something similar that was safe to grind up and put through the G-tube. With this exception everything else on my meds were back to normal. It turns out that substitute prostate medicine has continued to work well to this day. I’m not had a urinary infection in two years.

I managed to write another blog post about being in the ICU. I was really looking forward to Tuesday because that was the day that the respiratory therapist was going to bring in my new ventilator and to train my dad and Carol how to use it. Dad would then stay overnight Tuesday night to prove to everyone that he was capable of taking care of me. It was a ridiculous requirement but it was the only way they were going to let me out of the place. Theoretically I could be going home by Wednesday the 28th. Here are the two Facebook posts I made that day. [12/26/2016 6:58 AM ] [12/26/2016 6:14 PM ]

The next installment in this series is a couple of blog posts away. Click here to read “Training Day — Holiday Hospital Part 9

The Christmas We Deserve — Holiday Hospital Part 7

This is the seventh in a multi-part blog about my 2 week stay at St. Vincent Seton Specialty Hospital. Here is an index to all of the entries in this series.

Chaplain Services

I just realized that I forgot to tell you about the hospital chaplain that I met I believe the first full day that I was at Seton Hospital. As I’m writing this blog, it is 16 months after the fact so naturally my memory of events isn’t exactly total recall. Much of what I’m writing comes from a combination of two sources: One was a file I created “calendar.doc” containing one or two lines of notes about what happened on that day. The other source is the series of Facebook posts that I’ve been linking. Somehow I forgot to put in the notes on Facebook that there were two chaplains that I encountered during my visit. Unfortunately I didn’t make any notes about their names and I can’t recall either of them.

The first guy showed up I think on my first full day. He looked to be about 40 years old and was a very outgoing and gregarious kind of guy. He was a tall handsome man with light brown hair and a permanent smile. For those of you reading this who know the Enneagram system of personality types, he was very definitely a type THREE. He sat down and we had a nice conversation.

I told him about my involvement in St. Gabriel Church and how I had a good prayer support system behind me. Somewhere along the way I mentioned that I had been an RCIA teacher for 30 years. A puzzled look went across his face. Then he admitted he didn’t know when I was talking about because he wasn’t Catholic. I don’t recall what particular denomination he was but I seem to recall that it was some sort of evangelical branch. It might’ve been Baptist but I’m not sure. I thought it was really bizarre that a Catholic institution would hire a Protestant chaplain. But given that there is a priest shortage, if you weren’t going to have a person who could deliver sacraments then any person of faith would be okay. Although it is a Catholic institution, the population of Catholic patients was probably on par with whatever the general population percentage is. So having a Protestant chaplain wasn’t totally crazy. Just surprising.

He had with him a large piece of paper perhaps 12” x 24” that was a kind of a poster that had a number of questions about my personal life. I seem to recall he had things like favorite food, favorite TV show, hobbies etc. The intention was that I fill it out and they would post it on the wall where the staff could read it and get to know me. I never did fill it out.

I seem to recall we shared a prayer and he would drop by from time to time checking on me. At one point I shared with him the story of my friends from Adafruit and makers community and how surprised and pleased I was with their support. I especially wanted to tell him the story of how Phil seemed inspired by the fact his well wishes had had a positive effect on my recovery. I described it to him as a well disguised bit of evangelization on my part. I wasn’t really out to convert Phil to Christianity. But the fact that I had opened the door to get him to consider some spirituality and its real-world effects I thought was an interesting story. The chaplain seemed to enjoy it.

At this point in the story we are at December 23. It was about this time that the primary chaplain went on vacation and he was replaced by another guy whose name I forget. He was kind of short and a bit rotund. Not quite as outgoing or gregarious as the other guy but still very nice. I do recall that he was Lutheran which is somewhat more Catholic-like then an evangelical. Lutheran theology takes the same nonliteral historical critical approach to Scripture and they celebrate sacraments such as communion.

This backup chaplain had been tasked with facilitating a ceremony to put the baby Jesus into the manger of the lobby of the hospital. There had been a sign posted saying that the ceremony would be at 5:30 p.m. on the 23rd. I made it a point to be up in my wheelchair to participate in the ceremony even though I really didn’t expect it to be a very uplifting or spiritual experience. It was just something to do in a place and a time when there was nothing to do but sit and wait.

A Charlie Brown Christmas

On December 9, 1965 CBS premiered in animated special titled “A Charlie Brown Christmas”. If you ask the average person the title of a show featuring the Peanuts characters that had to do with Christmas, they would probably tell you that the title was “Charlie Brown’s Christmas” thinking that it is the story of Charlie Brown and the Christmas that he had. In the actual title, the words Charlie Brown are not about the character himself. The subject is not Charlie Brown. The subject is Christmas. “A Charlie Brown Christmas” is describing the type of Christmas that it was. It’s similar to saying “A White Christmas” or “A Merry Christmas”. One of the keys to this distinction comes from a sentence that one of the characters delivers (I believe it was Lucy) when they say “Of all the Charlie Brown’s in the world… You are the Charlie Brownieist.”

Charlie Brown is Murphy’s Law incarnate. He is a sad little character for whom everything goes wrong. His kites always get eaten by the famous kite-eating tree. His baseball pitching is notoriously bad. Every time he tries to kick a football, Lucy pulls away at the last moment and he lands on his backside. The plot of the story is about his attempt to be the director of a Christmas play. In an attempt to set the proper mood, he concludes they need a Christmas tree. His choice of a scrawny, dried-up, twig of a tree initially only serves to be yet another defeat for him.

Somehow in the end, mostly as a result of his right-hand man Linus quoting Luke’s version of the nativity story, Charlie and his friends managed to discover “what Christmas is all about”. It is a cautionary tale about the commercialization of Christmas. But moreover the story is a subtle reminder to keep Christ in Christmas. In its own way it’s much more powerful than the cliché bumper sticker quote “Jesus is the reason for the season”.

Although Linus reading of the Lucan Nativity is the catalyst that “saves Christmas”. In the end really it is all of Charlie’s friends who saved the day. Linus says “It wasn’t such a bad little tree. All it needs is a little love”. The love of Charlie’s friends transforms not only the tree but Charlie himself and Christmas is saved.

I’ve always identified with Charlie Brown. There is a bit of physical resemblance. At age 10 I had a burr haircut and a round face. But beyond resemblance I felt the connection to him. It’s not that I saw myself as a perpetual loser. I think it was more that despite all of his failures he kept persisting. His never say die attitude was something I embraced in dealing with my disability. Just keep persisting despite all odds. And like everyone, I’ve known my share of failure and sadness.

Finding myself in a hospital at Christmas time solely for the reason that the bureaucracy would not authorize my ventilator in a timely matter could easily classify itself as “A Charlie Brown Christmas”. I was cut off from all of the traditions that are at their core of what makes Christmas special. In my childhood we would go to grandma Osterman’s on Christmas Eve. Have Christmas at home on Christmas morning. Go to grandma Young’s on Christmas afternoon. In recent years we would do Christmas Eve at our house with my sisters bringing their kids and grandkids and then spent Christmas day at Carol’s house with her grandkids. The usual traditions of food, lights, decorations, presents, music, home were going to be nothing but memories for this particular Christmas. Although I had not been to Midnight Mass in many years simply because it was too difficult for my stamina, apparently I was even going to be cut off from Catholicism this Christmas with nothing but a substitute Lutheran chaplain for spiritual direction and celebration. I had spent hours preparing my custom-designed Christmas cards and although they arrived from the printer just before I entered the hospital, they were not going to be mailed until after I got home. Dad had set up our little Christmas tree in the living room but because he was never home, he rarely turned it on.

So this was the atmosphere surrounding the placing of a statue of the baby Jesus into the manger of the Seton Hospital nativity scene. This was a Catholic ceremony for which I was totally unfamiliar that had been scheduled and planned by an evangelical preacher who went on vacation and left the job in the hands of a Lutheran chaplain who had little idea what he was doing there or why he was doing it.

We all gathered in the chapel at the appointed hour. There was me, I believe a nurse or two, another patient in a wheelchair, and I believe perhaps one family member (not my family). Dad who is not at all religious stood by outside the chapel with my iPhone. At my request he was ready to record the events as if they were going to be something special or memorable. The chaplain offered prayers. I seem to remember there was a Scripture reading of some kind. I believe he asked for volunteers to either read the prayer or Scripture and I did so with someone holding the page for me. We then made our way out into the lobby where he placed the small statue into the manger and then invited us to sing some Christmas carols. Dad missed part of it because he was unfamiliar with how to shoot video on an iPhone. Here is the video that he shot that day.

My comment at the end of the video that just got cut off as dad stopped recording was where I said “I don’t think any of us should quit our day jobs to become singers.” It drew a couple of chuckles from people.

It would be easy to look at this entire situation as a horrible tragedy. A pathetic attempt to squeeze some meaning out of Christmas under sad, depressing circumstances. But somehow in the spirit of Charlie Brown it was all okay. It was a determined if feeble attempt by all of us to not let our circumstances totally rob us of Christmas.

In 1975, Greg Lake of the famous rock group Emerson, Lake, and Palmer recorded a song titled “I Believe in Father Christmas”. He recorded it first as a solo single and later appeared in the ELP album “Works Volume 2” in 1977. Lake wrote the music and lyrics were by Peter Sinfield. The song reached number two on the UK singles chart in 1975 beaten out only by Queen’sBohemian Rhapsody”. In a YouTube video I found, Lake said it was one of his most requested songs whenever he performed whether it was Christmas season or not.

It has been included in many Christmas compilation albums which is strange to me because for the most part it is a very atheistic look at Christmas. Lake said he wrote the song as a protest to the commercialization of Christmas. Lyricist Sinfield however said that the words are about the loss of innocence and childhood belief.

As I understand the lyrics, it’s about someone who was tricked into believing the mythology of Christmas and Jesus as a young child and who eventually grew up to reject the whole thing as a fairytale. Yet somehow the message of Christmas, peace on earth goodwill towards men, while unfulfilled still resonates with the author. He wishes the listener have “A Hopeful Christmas” and despite his disillusionment over the religious aspects of the season, the title still indicates he believes in “Father Christmas”. In 1975 when the song was released it pretty much exactly describe my feelings about Christmas. It was a time when I had turned away from faith and to the church and considered myself decidedly agnostic if not completely atheist. It wasn’t until nearly a decade later that I returned to the church and we discovered my faith.

Whether I was in my agnostic period of time or now as a person with reawakened and rediscovered faith, I still like the song. Despite its rejection of the religious roots of Christmas the important part of the song for me has always been the final two lines.

Hallelujah Noel be it Heaven or Hell
The Christmas we get we deserve.

To me that says that whether you believe in Jesus or not, Christmas is so powerful that if you can’t manage to enjoy it then it’s your own damned fault. Anyone who is so cynical as to not enjoy Christmas gets what they deserve. That sentiment has always embodied my personal feelings about Christmas whether I was a believer or not.

That sentiment is how I could look at that pathetic ceremony under pitiful circumstances and still find the spirit of Christmas.

As you will see in the next blog or two, I was surrounded by family and friends and presents on Christmas Eve and Christmas Day. It wasn’t the usual Christmas but it was Christmas nevertheless.

Here are the complete lyrics of the song followed by some links related to it.

They said there’ll be snow at Christmas
They said there’ll be peace on Earth
But instead it just kept on raining
A veil of tears for the Virgin birth
I remember one Christmas morning
A winters light and a distant choir
And the peal of a bell and that Christmas tree smell
And their eyes full of tinsel and fire

They sold me a dream of Christmas
They sold me a Silent Night
They told me a fairy story
‘Till I believed in the Israelite
And I believed in Father Christmas
And I looked to the sky with excited eyes
‘Till I woke with a yawn in the first light of dawn
And I saw him and through his disguise

I wish you a hopeful Christmas
I wish you a brave New Year
All anguish pain and sadness
Leave your heart and let your road be clear
They said there’ll be snow at Christmas
They said there’ll be peace on Earth
Hallelujah, Noel, be it Heaven or Hell
The Christmas we get we deserve

Technical Support — Holiday Hospital Part 6

This is the sixth in a multi-part blog about my 2 week stay at St. Vincent Seton Specialty Hospital. Here is an index to all of the entries in this series.

We are up to Wednesday, December 21. I had some hip pain overnight but took a pain pill and it seemed to help. Spent most of the morning resting after a restless night. I had a little bit of problem with my blood pressure being a little bit low and my heart rate a bit low. The low heart rate sets off an alarm that kept waking me up. I think it was something in the alarm that got reset when we took the heart rate monitor off of me when I would get up in the wheelchair. This continued to be a problem throughout the stay.

One of the ridiculous hoops that we had to jump through in order to get approved for a ventilator at home was that the equipment company had to inspect our house electrical system to make sure it was safe to use the ventilator. As explained in this Facebook post, I had already researched online the type of ventilator we were going to use and I knew it was no more powerful than the CPAP that I was already using. In addition the ventilator had two backup batteries so if the ventilator would fail, the battery backup would be way more than enough to get me through the night. Keep in mind that this ventilator really wasn’t a life critical issue for me. It was just to help me sleep better like a CPAP. But you can’t use a CPAP when you have a trach.

Dad did finally make connections with Home Health Depot and they came to the house at about 1:30 PM. So dad came to the hospital after that. I spent the day working on my blog and swapping some emails with my friend Judy talking to her about the events that I was blogging about. I made no plans to get out of bed since dad was going to be coming late. [12/21/2016 10:48 AM] [12/21/2016 12:46 PM ]

A Video Surprise

In an earlier blog post about my stay in the ICU I mentioned that my friends from Adafruit Industries had called the hospital to inquire about my progress. Adafruit manufactures and sells open source electronics and gadgets to makers like me. The post titled “Meeting Your Maker” is mostly about wrestling with my own mortality. But it’s also a bit of a play on words because it talks about my involvement in the maker community and my curiosity as to whether I had made an impact on that community. At the end of the post I talked about the history of Adafruit and my history with them. I was really touched by how concerned their founders Limor Fried and Phil Torrone had been about my illness.

I use Adafruit parts to build my ultimate remote that I used to control my iPhone. I needed that gadget to communicate when I was on the ventilator and typing messages on my iPhone was my only means of communication. I had exchanged emails with Phil and Limor in the days since that phone call but I wanted the opportunity to speak directly to them. Wednesday nights were their regular night for the weekly “Show-and-Tell” video chat where people like me would login using their WebCam and show off their electronic projects, 3D printed gadgets, cosplay props and costumes or any other kind of maker project whether it involved the use of Adafruit products or not. Because I have a WebCam in my laptop and had pretty good use of the laptop from my bed, I decided I would drop by the Wednesday night program just to thank everybody for all of their well wishes and support.

I dropped Phil an email to tell him I was going to be at the “Show-and-Tell”. He sent me an email with a link to a video he had made. Each week they have a staff meeting at Adafruit that they call “State of the Fruit” in which they discuss how the company is doing, talk about goals, and they read support emails from satisfied customers. It’s sort of a weekly company pep rally. Phil told them about my illness and they made a brief 10 second private YouTube video in which they all said in unison “Get well soon Chris”. I couldn’t believe that they had done such a thing. I was very moved. Here is the brief video.

Even though I already linked my “Show-And-Tell” video in the previous blog post, I will copy it here again. My segment starts at about the four minute mark.

After the weekly show and tell, there is another program called Ask an Engineer and among the features of that program is a recap of what happened in the just concluded show and tell program. Although I did not watch the following Ask an Engineer live that night, I did go back a few days later to see what they had to say about my visit. During that segment there was a sentence from Phil that said something like “as we told you about last week…”. That was the first that I realized they had talked about me at the previous week’s Ask an Engineer. So here are some links to those videos. I’m still blown away by the support I got from them.

This is the Ask an Engineer from 12/14/2016 which was the first show after my email to Phil and his phone call to me. It is queued up to the 14:21 mark of the one hour program at the point where they start talking about me.

The segment is about two minutes long. At one point Lady Ada says “It’s never too late to tell the people you love how much you care about them.” And that was the entire point.

After I appeared on the show and tell from my hospital bed on 12/21/2016 this was what they had to say in the recap during the Ask an Engineer. He talks about me at this 15:30 mark.

Phil mentioned that they sent me a get well video. That was the 10 second video that I showed earlier.

Shortly after all of this occurred, I met up with a group called that is dedicated to using maker skills to create open source assistive technology solutions like my ultimate remote. Adafruit has taken up that cause as one of their pet projects and have been very supportive of and all of our efforts to build useful gadgets. Not everybody has the maker skills or equipment that my dad and I have to build gadgets for me. This group tries to connect high school and college engineering and science students with disabled people to work together and create custom solutions. It’s been a real honor to be a part of that effort and in some ways it grew out of my experiences during this illness.

We did pass our electrical inspection from Home Health Depot. Dad tried to pick their brains about how long the process was going to take and was there anything we can do to expedite it. With Christmas right around the corner I was worried it was going to slow things down even more. It turns out the guy doing the inspection really didn’t know anything. He was just there to do a job. As it turned out the Christmas holiday did continue to slow things down. I posted the following message to Facebook right before I went on Show and Tell and then after the show I posted that video to Facebook as well. [12/21/2016 7:07 PM ]

Coordinating Services

Thursday, December 22 I had a visit from Joyce Beavan my caseworker from CICOA. That stands for Central Indiana Council On Aging. They provide case management services that manage all of my Medicaid and coordinate my home health aide. She was able to meet with the case management person from Seton Hospital named Michelle. She made all sorts of promises about different kinds of nursing assistance she was going to be able to get for me once I went home.

One of the problems is that an ordinary CNA (Certified Nursing Assistant) like I had had for many years, was not allowed to do anything with my trach. That didn’t surprise me because when I had gotten my G-tube they similarly were not allowed to have anything to do with it. But what I didn’t know was that the CNA was not allowed to be alone with me now that I had the trach. If I needed a suction of my trach they weren’t allowed to do it and so I would be in big trouble if they were the only person available. This was going to be a real problem because typically dad would do his grocery shopping on Tuesday mornings while the aide was getting me dressed. Furthermore if he had doctor’s appointments he would also try to schedule them in the morning when the aide was here. As an alternative we would sometimes schedule the aide for extra hours if he had an afternoon appointment. Only a real nurse would now be permitted to do that. They assured me that there were lots of nursing services that were going to be available for me.

I was concerned that they were going to completely replace my CNA with a real nurse. We had had a lot of trouble finding someone to fill that spot and I didn’t want to have to start over again with somebody new. Also I really didn’t need an RN to get me bathed and dressed. We just needed someone to stay with me while dad was gone. I got reassurances that I can keep my CNA for morning bathing and dressing as long as my dad stayed home. The nursing would be in addition to that. Spoiler alert… Despite all of the promises and despite their best efforts, it still took us nearly 6 months to find a nurse.

The other little interesting incident that happened that morning was that one of the respiratory therapists tripped over my nurse call button wire and broke off my 3D printed adapter ring. My notes say that I sent a message to dad to bring superglue and/or anything else we might need to repair it. I don’t recall if I typed a message on the computer to alert him or if I gave him a phone call. But the bottom line is he brought the necessary equipment and we were able to repair the button. Here was my early morning Facebook post. [12/22/2016 9:38 AM ]

Taking a Tour

After taking Wednesday off and staying in bed, today I got up and was out of bed for about five hours. Carol came by and brought my great-nephew Leighton (her grandson). We went down to the cafeteria while dad ate lunch. Carol helped me shoot a live Facebook video where we took a tour of the cafeteria, the nativity scene in the lobby, and the chapel. Unfortunately when I wasn’t facing the iPhone you could not hear my narration. The nativity scene in the lobby did not have a baby Jesus in the manger. Apparently there is a Catholic tradition that I didn’t know about that you don’t put the baby in the manger until Christmas Eve. Because the chaplain was busy Christmas Eve, they scheduled the ceremony for the afternoon of the 23rd. The other bit of the video that you can’t hear me describing is that you can see our red van in the parking lot out the window of the lobby. Sometimes when I went downstairs I would just sit and stare at the van waiting for the day I can get back in it and go home. Here is the Facebook video we shot that day.

Left Hanging

In my previous blogs about St. Vincent ICU I recounted what I called “The First Incident” and “The Second Incident” in which I had some problems with nurses who were not too keen on respecting my wishes despite my protests. Both of those incidents were entirely tied to the fact that I was on the ventilator and could not talk. However here at Seton Hospital, I was only on the ventilator at night so I really didn’t have very many problems. But there was a couple of minor incidents most notably one with a respiratory therapist named Laverne.

I’ve already mentioned that every six hours they give me a breathing treatment with albuterol. In addition to that they changed the piece of gauze that fits around my trach twice a day and they change the strap every other day. During the breathing treatments, the hose is connected to the trach mask but they have to remove the talking valve so that the mist can get in your lungs easily. Usually they come in, start the treatment which takes 6 to 8 minutes, change the gauze and then put me back on my talking valve. But because they are very busy sometimes they start the treatment and then walk away and come back later. Normally that’s not a problem but to get the gauze changed they have to sit me up in the bed straighter so that my head can tilt back and they can get underneath my fat chin. This particular time while doing all of that she left me in a very uncomfortable position without my call button in my hand. I didn’t mind her leaving while the breathing treatment was going on but I didn’t want to be left in an uncomfortable position. She got distracted taking care of somebody who needed her more than me which was no problem. But she shouldn’t have left me in that position.

When I talked to her about it later she gave me a lot of grief over saying she couldn’t be at my beck and call. She had other patients to care for. I tried to explain that I realize that. Just don’t leave me hanging. Change the gauze with the valve still in, get me and a comfortable position, make sure I have my call button, then start the treatment and you can leave me all day. I think I finally got her to understand but it took a bit of a debate.

There was only one other real problem I had with one of the nurses who I called in the middle of the night while on the vent. Despite the fact that I had my instruction sheet laying there on my chest telling her how to communicate with me and she was reading the notes, she didn’t seem to be able to follow them. The top item on my instruction sheet was “How to communicate with me”. But for some reason she skipped over that part and started asking me questions that were clear at the bottom of the page about bed positioning etc. I don’t think English was her first language. She looked to be Korean or Chinese or some sort of Asian and spoke with an accent.

There was another time where one of the nurses thought I needed something from the respiratory therapist when I really didn’t. He got a little testy with me when I said I wanted off the vent. That wasn’t a priority at the moment and he was busy with other patients. Later when I did get off the vent, I had the opportunity to explain to him I wasn’t the one called him and I didn’t really need him but I thought getting off the vent would be the quickest way to explain all of that. After the explanation we were cool.

Overall the experience with the nurses and therapists at Seton was much less dramatic than what I had been through at the St. Vincent ICU.

Here was the last Facebook post of the day [12/22/2016 5:09 PM ]

A Dry Heat — Holiday Hospital Part 5

This is the fifth in a multi-part blog about my 2 week stay at St. Vincent Seton Specialty Hospital. Here is an index to all of the entries in this series.

Vertical at Last

We are now up to Monday, December 19, 2016. Things were relatively quiet around the hospital over the weekend but starting Monday things were much more active. The staffing levels were higher. Therapist were back on duty. Although we didn’t really need the people from physical therapy to assist getting me out of bed and into the wheelchair, they wanted to be involved in that activity. They would need to round up a lift seat for me to use. Rather than a regular Hoyer patient lift like I use at home with a pump handle that you have to pump up and down and it rolls around on the ground, they had a motorized hoisting device hanging from a track on the ceiling. It was best we had them help because we really didn’t know how to work the gadget yet. I had had an uneventful night and my lungs were in pretty good shape according to this Facebook post.
[12/19/2016 11:06 AM ]

We eventually rounded up someone from therapy and they got us a lift seat and managed to get me into the chair without incident. I took the opportunity to drive around the hallway up and down once or twice. I went across the hall to visit my neighbor. It was a guy who looked like he was about 60 or so and had had some sort of physical problem I forget what. He was awaiting the opportunity to be transferred to a rehab hospital and ended up being discharged the same day that I was about two weeks later. We then set up my laptop on the hospital tray and I figured out how to use the WebCam to do a live video on Facebook. Here’s the video I posted.

In the background of this video you can see the motorized lift device hanging over my dad’s head.

That evening I was visited by my friend Judy Chapman. It was the first opportunity I had had to talk with her since I had been in the hospital. During her previous visits in the St. Vincent ICU I had still been on the ventilator and could not talk. I was able to tell her the complete story of all the events that had brought me this far. We talked about the text message I sent her the content of which became the title of that 14 part blog series “Pray That They Listen to the Man with No Voice”. I talked about the two incidents with nurses who treated me so badly because I couldn’t talk and defend my position and about the therapists who did take the time to pay attention to my wishes. It was wonderful to get caught up with her and tell her all the stories I had not been able to tell her up until now.

The only other item I have from my notes for that day was that I had constipation and had to take a suppository. The bedpan that they had at the hospital was very uncomfortable so I had dad bring my bedpan from home. It was one I found on Amazon that had a very wide lip around it. The standard bedpans these days have a sharp edge that digs into your hips and can be uncomfortable.

As Dry as Arrakis

On Tuesday the 20th, they did a big team meeting. It included the case manager Michelle, people from all of the therapy departments, the nurse practitioner, and even the chaplain. It’s a weekly ritual where they evaluate how you are doing, what your goals are, and address whatever concerns any of the team has about your care plan. We made the conclusion that I did not need physical therapy, or occupational therapy so I was officially “discharged” from their programs.

One of the issues we addressed was my concerns about humidity. After being up in my wheelchair for a couple of hours the day before, I had ended up with a little more congestion in my lungs because my lungs had dried out somewhat. At times I had a little difficulty with coughing spells while trying to talk to Judy that evening.

As I had mentioned in the second installment of this blog “A Busy First Day”, they had me wearing a device called a trach mask. It’s a clear plastic cup that fits over your trach and is held around your neck with an elastic strap. A hose connects it to a source of heated humidified oxygen running at up to 10 liters per minutes. I didn’t really need the extra oxygen but I was pretty sure I needed humidity. Normally when you are breathing through your nose or mouth, the air is warmed and humidified by the moisture in your sinuses or mouth before it enters your lungs. However when you are breathing through a trach, the air goes straight into your windpipe and doesn’t have the opportunity to be humidified. They made a big deal about how I needed to be on this humidity all the time. It was very noisy and most of the time I would turn it down from 10 to about six or so.

One of my growing concerns was what to do once all of this was over and I was trying to get my life back to “normal” again. I knew I wasn’t going to need to be on a ventilator all of the time. The talking valve meant that I had my voice back again. But I didn’t want to be tied down to some big piece of hose connected to a humidifier all of the time.

One of the alternatives is something called an HME attachment for your trach. The letters stand for Heat and Moisture Exchange. Sometimes it’s called an artificial nose. It is simply a cap that fits over your trach and it has a small piece of foam in it. As you exhale, it captures the humidity from your breath. Then when you inhale, the humidity goes back into your lungs. It kind of reminds me of the stillsuit technology worn by the Freemen on the desert planet Arrakis in the Frank Herbert sci-fi classic “Dune”. The problem is, it doesn’t work with a talking valve.

The Passy-Muir talking valve has a butterfly flap inside it. When you inhale, the “wings” collapse and allows you to breathe in through the trach. When you exhale, the wings flap apart closing the passage and instead of exhaling through the trach, the air goes out your windpipe and past your vocal cords allowing you to talk normally. So the HME device never gets your exhaled breath to collect the humidity to be recycled. You already know how I feel about not having the ability to speak so the HME was not a viable option either.

The only other alternative is what is called a “red cap”. It is a solid cap made out of red plastic that completely closes off your trach. Then you just breathe normally in it out your mouth or nose through your windpipe as if you had no trach at all. After discussing this option with the respiratory therapist I tried to get the doctor or nurse practitioner to write orders to allow me to try it out. I got in a somewhat nasty argument with a nurse practitioner named Joy. She tried to convince me that because my particular type of trach had an inflatable cuff that it was not meant to be used with a red cap device.

The problem is that if for some reason the inflatable cuff doesn’t get fully deflated or if somehow the cuff would malfunction and block your airway, you wouldn’t be able to breathe at all. Without the red cap device, if the cuff would fail and block your airway, you would still be able to breathe through the trach. Even with a talking valve it might be difficult but you wouldn’t suffocate. I suppose that’s one of the reasons they make it red is because it is a somewhat dangerous device. You don’t want to accidentally put one on a person who shouldn’t have one.

I tried to convince the nurse practitioner in a very heated debate that I did not want to be tied down to a humidifier. I practically begged her to let me at least try the device and she pretty much refused. Later in the afternoon I did some online research about trachs and how the cuff works. I believe at one point they even brought in an anatomical model to show me how a cuffed trach works. There were also some online videos that explained it. The doctor was going to be making rounds that evening and I had planned to appeal to him for the use of the red cap but by then I was beginning to understand the real risks and so I gave up on that idea. So it was a very heated debate… but it was a dry heat 🙂

This Facebook post inarticulately tries to explain all of the above. There are some dictation typos and errors that make it almost unreadable in places. I guess I didn’t proofread very well. [12/20/2016 6:05 AM ] I also got up in the wheelchair again for the second day in a row and made the following live Facebook broadcast.

Skills Lab

At some point dad was going to have to learn a lot of new skills about how to take care of the trach. I was receiving an albuterol breathing treatment every 6 hours around the clock (even at night). They were changing the gauze pad around my trach twice a day and the strap around my neck every other day. I also periodically needed my trach suctioned out with a catheter to clear congestion. So the respiratory therapist started giving my dad training sessions on how to do that.

The most complicated part is to suction the trach. The catheter comes in a little kit with its own pair of sterile latex gloves. These are not the kind of traditional latex gloves they pull out-of-the-box when dealing with you in the hospital. These are carefully wrapped in a paper envelope and are 100% sterile. Of course my dad has very large hands and even though the gloves will stretch to any size, it’s very difficult for him to put them on. They insist that you only touched the gloves by the cuff. One of your hands is considered the “clean hand” and the other is your “dirty hand”. You aren’t allowed to touch anything but the catheter itself with your clean hand.

This day was just the first of several training sessions they gave my dad. It wasn’t until the last day when we were talking to one of the nurses and she admitted “You realize, when you get home you probably aren’t going to go through all of that. As long as you don’t touch the end of the catheter and you keep it clean going in, you don’t need to worry about gloves or clean hand/dirty hand issues.” Dad and I looked at each other like “Then why the fuck did we have to go through all of that here?” The catheter kits supplied by my DME provider don’t include the sterile gloves and we never use even nonsterile gloves except when actually changing the trach itself. Although it took a bit of attitude adjustment on my part, I eventually trained friends and family how to do a trach suction. But that’s another story.

Miscellaneous Events

Carol came to visit that evening and gave dad a break. I told her the whole story of my arguments over what to do about humidity. The other thing that happened was we finally got the call from Home Health Depot to set up an in-home visit. That was part of the lengthy process we needed to get approved for an in-home ventilator. They set up an appointment to come to the house at 1:30 the next afternoon. Dad waited around on them and did not come until later in the day on Wednesday. This Facebook post shares my thoughts on all of the stuff we had to go through to get certified for the ventilator. [12/20/2016 9:51 AM ]

While I normally would not confess to illegal activity in a public blog, I will admit here that I downloaded a bootleg copy of “Rogue One: A Star Wars Story”. I never missed seeing any of the Star Wars movies since the first one. Most of them I’ve seen in a theater multiple times and that doesn’t include dozens of viewings on cable or DVD. I always go with my friends Rich and Kathy Logan. We saw the first one together. We went back and saw it again a year later for a one year anniversary. And I’ve seen every other episode with them. But when they visited over the weekend I told them they needed to go ahead and see Rogue One without me even though it really hurt to admit I wasn’t going to get to see it in theaters. The copy I watched was a really bad camera copy with bad audio. Not the best way to see a big action-adventure movie. In my defense, I did eventually purchase a 3D Blu-ray and I watched it as well on cable that I paid for legitimately. Under the circumstances I don’t feel bad about indulging myself under these conditions. Wednesday would be a day of more legitimate online activities. We will cover that in the next installment.

An Uneventful Weekend — Holiday Hospital Part 4

This is the fourth in a multi-part blog about my 2 week stay at St. Vincent Seton Specialty Hospital. Here is an index to all of the entries in this series.


In December 2016 I spent nearly the entire month in the hospital with respiratory problems. I chronicled the first 10 days or so of St. Vincent Hospital ICU in a series of blog posts titled “Pray That They Listen to the Man with No Voice”. The remaining two weeks were spent in a different hospital called St. Vincent Seton Specialty Hospital where I stayed through Christmas. I’m calling this second series “Holiday Hospital”

I didn’t get around to starting to write about those additional two weeks until over six months later in July 2017. I wrote 2 installments in July and then a third one in September but never got back to it until now April 2018. Even though it was well after a year since these events occurred, I do have some notes about what happened each day and I will have links to Facebook posts and videos that I made at the time. Who knows if I will finish it this time or I will take another couple months off. But anyway here goes. The link at the top of this page takes you to a table of contents for this entire series. Note: anywhere you see the little Facebook icons it will link you to a Facebook message I wrote at that date and time.

An Uneventful Weekend

We are now up to Saturday, December 17. I had been having a lot of problems with congestion and one of the things they had been doing supposedly to help it was giving me some sort of medicated patch to wear. I forget the name of it but it was supposed to help with my congestion. We concluded that perhaps it was making the congestion too thick so we decided to discontinue it and see if that helped. It really did. My lungs were much better without the patch. [12/17/2016 6:50 AM ]

Dad brought in my electric razor and he shaved me for the first time since I had moved to this facility. I had shaved once before in the ICU so this was only the second shave in about 10 days. I had developed a rash on my neck from not shaving, being sweaty, and having a trach collar around my neck. They brought in a roll of medically treated cloth in a little box that looked like a wax paper roll. The cloth is white, stretchy and had a bit of a sheen to it almost like a silk cloth. It was treated with some sort of silver solution. It was designed to wick away your sweat from creases like around my fat neck. It really worked well to clear up the rash over the next day or two. I took home the leftover material when I checked out and I’ve used it once or twice since then. It’s really good stuff.

Typically dad was arriving late morning and staying till about dinnertime when he would go home before dark and Carol would come and visit me in the evening. It was always handy to have a family member there who could make sure that I was laying comfortably and had my call button in my hand. They could do things for me so I didn’t need to bother the nurses or aides. But there was supposed to be an ice storm coming in and Carol canceled her visit. That was okay. By now I was settled in to my environment a little better than I had been originally. I also told dad not to come on Sunday because the roads would be terrible. [12/17/2016 6:34 PM ]

Sunday the 18th was mostly an uneventful day for me. My lungs were in good shape when I woke up however I did have some hip pain so I took a pain pill. Lying in bed so much and trying to set up in bed without my back brace on was messing things up for me. Dad came to visit despite the nasty weather. Not much goes on in the hospital on the weekend. [12/18/2016 8:27 AM ]

I did not sleep very well the night before but I was able to catch a nap along the way. I watched the Colts win their game but unfortunately Tennessee also won which made our playoff hopes much diminished. Dad brought with him the latest 3D printed parts for my nurse call button and they worked really well. I posted a photo of them on Facebook. [12/18/2016 4:08 PM ] [12/18/2016 6:58 PM ]

I said it was uneventful for me but from a news standpoint it was an eventful day. I was saddened to hear of the passing of former Indianapolis Mayor William Hudnut. He was a great Mayor who did a lot of good things for the city especially negotiating the transfer of the Colts NFL team here from Baltimore. He continued the work of former mayor Richard Lugar in maintaining a Mayor’s Advisory Council on the Handicapped. I was honored by him to be awarded with “Indianapolis’ Outstanding Handicapped Citizen Award”. Here’s a photo I posted on Facebook remembering him. Behind me left to right is the mayor, my mom, my grandma Osterman, my Aunt Jody Roell, and my dad. [12/18/2016 10:59 AM ]

One of the nice things about having good Wi-Fi in the hospital and having my laptop was that I was able to catch up on some online streaming TV shows. I got on Netflix and finished up watching Luke Cage that day. I thought the whole series started off a little slow because as an old white guy I had trouble getting into the Harlem aspects of the story. But once it got deeper into his origin story and became more of a superhero story and not just an inner-city gangster story I ended up really liking it a lot. I didn’t have any problem with the black urban portions of the story. I just had trouble relating to it.

Having a Prophet for a Friend

This is the third in a multi-part blog about my 2 week stay at St. Vincent Seton Specialty Hospital. Here is an index to all of the entries in this series.

Where did we leave off?

It’s been quite a while since my previous installment because I had a major computer crash that took a week or so to recover. Then I got distracted with other things. We are now up to Friday, December 16 which is the first weekend that I spent in Seton Specialty Hospital. I had a bit of a rough night the night before. Here was my early morning Facebook post at 8:17 a.m.

The plans for Friday were to try to get me sitting up in the wheelchair. Dad brought my wheelchair with him that morning because the physical therapist said I should be getting up. It turns out the therapists were pretty busy that day and they decided they couldn’t help. Dad didn’t really need much of any help getting me dressed and in the chair except that we didn’t have any experience operating their patient lift equipment. As it turned out since I had had a kind of rough night the night before I decided to just stay in bed and we would get me in the wheelchair on Monday when the therapists could help us. Here is another Facebook post from later in the day at 5:06 p.m.

My friends Rich and Kathy Logan were planning to come by to visit me that evening. I had Rich bring me a print out of my communication board because I had a quick update I wanted to get and I didn’t want to wait until dad came the next day. But before they came, I kept myself busy throughout the day working on a 3D printing project.

Remote 3D Printing

Although my specialized nurse call button was working okay at the new hospital, my hand holding that button wasn’t doing as well. At one point a few years ago I thought I had glued a metal ring on the side of it that I would stick my finger into that would help me hold that in the proper position. Somewhere along the way I lost the metal ring. It’s extremely difficult to get the button positioned exactly the way I needed it. Anytime someone moved me or had to take the button away and put it back it was always difficult to get it put back in exactly the right position. Rather than trying to have my dad come up with a new piece of metal to glue onto the side of the switch, it was going to be easier to design and 3D print a new piece.

My St. Vincent Call Button

I do all my 3D modeling in a program called Blender 3D. That program isn’t specifically designed for 3D printing. It’s used mostly for rendering and creating video games and doing photorealistic 3D models similar to what I create in POV-Ray. It’s free and open source and rather than learn one CAD program for rendering and another one for 3D printing I decided to just stick with Blender back when I first got my 3D printer. So I downloaded a copy onto my laptop and begin designing a little ring that would fit on the side of the nurse call button. Once I had a prototype designed, I transferred it from my laptop to my desktop at home using Team Viewer file transfer features. I told dad when he got home that he should turn on the 3D printer. I would type messages to him on the screen of my desktop and I would initiate the 3D print. I have a WebCam pointed at the 3D printer so I could remotely monitor the progress of the print.

For many months I’ve had difficulty getting parts to reliably stick to the build plate. However just prior to going to the hospital I had installed a new Zebra Plate build plate on the printer that had been working wonderfully. It worked beautifully again when I was printing the part. I printed the part Friday night and dad brought it in Saturday morning. It turned out that I needed to put a little twist in the model so that the switch would be in the proper position. I actually printed 2 different versions at different angles but even the one with the greatest twist wasn’t quite enough. I printed a third version Saturday night and dad brought it in Sunday morning. The final version worked just fine. Here is a screen grab showing the part that I modeled in Blender 3D. It illustrates 2 different versions with a slightly different angle on the slot that fits onto the original switch.

Here are some photos of the final part attached to my nurse call button. The 3D printed part is in green plastic.

The use of a closed ring to put my finger through worked so well that when I got home I redesigned the way I use my pushbutton switches on my iPhone and my bedroom IR remote/alarm button. Prior to this, I had a 3D printed part that help to position the buttons my hand but they were just a couple notches to position my fingers. After my experience with the closed ring, I redid the part on my iPhone and remote switches to completely enclose one of the rings around my finger. I tried using 2 rings. I tried the ring around the index finger. But ultimately it works best with only one ring around my middle finger and just a notch for my index finger. Here are some photos that show the old and new versions of that switch. And some photos of it in use. A friend of mine from Facebook once described this as a Doctor Strange “sling ring”. It really made me mad when he said that. I wasn’t offended. I was mad that I didn’t think of the name first 🙂

Although this revised system worked fairly well throughout the rest of my stay at Seton, the way that the wire comes off of the switch would often get in the way of my wrist or my forearm. After I got home from the hospital I decided I would take the switch apart. And I would change the way the wire extends from the switch. I would redesign the ring. As I am writing this blog I’m also working on a new 3D printed part for the hospital call button. It will look more like the ones I use on my remote at home in that it will have a middle finger ring and a first finger notch. As I mentioned above, I could not hold both the call button and my remote buttons at the same time. Ultimately I hope to be able to resolve that problem as well for the next time I am in the hospital.

Having a Prophet for a Friend

That evening I was visited by my great friends Rich and Kathy Logan. I’ve known them since my college days and I was the best man at their wedding years ago. I took the opportunity to tell the story of everything that had happened while I was in St. Vincent’s Hospital getting the trach. They had visited me at St. Vincent but I was unable to talk during those visits so I had lots of stories to tell them. Basically they got a condensed version of my entire 14 part blog where I wrote about the St. Vincent stay.

When you lay around the hospital for days and you contemplate the friendships you have and legacy that you have built, you tend to think of things that had been left unsaid. While there really wasn’t anything significant unsaid between me and the Logans, there was one story I have been meaning to tell them for a long time and had not gotten around to it.

When I teach religion classes for the RCIA program at St. Gabriel, I teach a class about the Old Testament prophets. Normally you think of a prophet is a person who predicts the future. But that really isn’t the primary role of a prophet. Prophets are actually spokespersons for God. I described them as similar to the White House Press Secretary. Of course I used to use that example when we had decent people in that job. I would hate to equate a prophet of God with someone like Sean Spicer 🙂 Instead think of C.J.Cregg from The West Wing. But not only are prophets spokespersons for God, specifically their role is to call us back to God when we go astray. To remind us of our core principles when we tend to forget them ourselves. Typically a prophet says if you don’t shape up, things will go bad for you and if you do shape up things will go well for you. Whichever happens… their prophecy tends to come true.

As examples in my class I cite people like Abraham Lincoln whose Gettysburg address was a prophetic message that reminded us what we were fighting for in the Civil War. I also include people like JFK with his “Ask not what your country can do for you… Ask what you can do for your country”. Similarly prophets are dreamers. People who dream about what the world would be like if we would stick to our core principles. The primary example of course is Martin Luther King Jr. and his “I have a dream” address.

But I also give biblical examples of prophets who are personal friends. My favorite story is the story of Nathan who is a prophet to King David and who called him out when he killed one of his generals Uriah to cover up the fact that he was sleeping with Uriah’s wife Bathsheba. I tell the class sometimes our friends are prophets for us who call us back to be the best versions of ourselves. To be the people that they know we can be. To be the people who made them want to be our friends in the first place. I explained that true friends are the people who can lovingly look us in the eye and say “You fucked up but I love you anyway. Now get your god damn shit together.”

Of course I don’t use that kind of language teaching the class… But you get the point.

So I told Rich and Kathy that when I teach that part of the class, they are among the friends I think of who are my prophets and to whom occasionally I have been a prophet. I explained that what I cherish most about our friendship was our ability to lovingly point out when we were being a real dick about something. I also confessed to them that I had not always exercised my role as a prophet to them out of the purest of motives. Sometimes I had been a bit self-serving in my role as a prophet and that was something which I regretted.

It wasn’t exactly a deathbed confession and I made it clear that it wasn’t. But it was nice to take the opportunity to thank them for being prophets for me and to say that I haven’t always been the purest of prophet for them even though I tried to be.

There is a parable about a guy who goes to heaven and asked Jesus “What in your opinion was the worst sin that I ever confessed?” Jesus replied “Once you had confessed your sin, I didn’t remember it anymore. So I can’t answer that.” Like the true friends that they are, the Logan’s didn’t recall the incidents that I had recounted until I recounted them.

Scripture says “Faithful friends are life-saving medicine…” Sirach 6:16

I have no doubt that they and other faithful friends had been life-saving medicine for me.

The next installment in this series is not the next blog post. You can skip a couple of posts and picked up with the next installment by clicking here “An Uneventful Weekend — Holiday Hospital part 4