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 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’s “Bohemian 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 “Meet 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 while of this occurred, I met up with a group called ATMakers.org 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 ATmakers.org 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 June 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 ride 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 tried 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.

Recap

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 the 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.

About Ableism and Other Imposition of Worldviews

Recent tributes honoring the life and death of renowned physicist Stephen Hawking have reignited a long time debate on the topic of “ableism”. Images such as this one depicting Hawking free of his wheelchair and walking among the stars are among those sparking a lively debate about ableism.

For me there are really two parts to this debate. What is or is not appropriate in an expression of one’s feelings about the death of a celebrity? And separately does this particular tribute or other similar statements made in tribute to Stephen Hawking really represent ableism.

If you’re not familiar with the term “ableism”, it is a type of prejudice which denigrates those with physical disability in favor of those who are able-bodied. It is a type of prejudice that has parallels to racism and sexism.

Before addressing the claims of ableism, I’d like to address the issue of celebrity tributes in general. When a celebrity dies, we often see tributes to them which are not necessarily in tune with the deceased’s particular beliefs or wishes. We saw the same thing when Steve Jobs died. A number of cartoons depicted him in heaven and/or being in the presence of God which would have been contrary to his Buddhist beliefs. Here’s a page with a good sampling.

http://w99.suretech.com/16846/Steve_Jobs_Remembered_in_Cartoons

There was similar controversy during this year’s Super Bowl halftime concert by Justin Timberlake who projected an image of Prince onto a large screen. Prince had specifically said he did not want to appear as a hologram after his death. Although not technically a hologram, it did have a sort of ethereal holographic feel to it.

The Steve Jobs tributes were undoubtedly disrespectful of his religious beliefs. The criticism of the Super Bowl depiction of Prince was probably a little bit nitpicky especially since it wasn’t really a hologram. Furthermore it was not complicated by religious overtones. But was there anything similarly inappropriate about this particular tribute to Hawking?

This article from time.com documents his beliefs about God and an afterlife.

http://time.com/5199149/stephen-hawking-death-god-atheist/

In various statements, he made his atheist stance quite clear. This included his disbelief of any sort of afterlife. His beliefs about God confused people because he had written famously that if we understood how the universe worked that we would glimpse “the mind of God”. He later made it clear that he was speaking much more metaphorically. For him God was not a particular being with which one would have a personal relationship. Rather God was a metaphorical concept of the manner in which the universe worked. He did not believe in a being like God who was responsible for creating it. He was instead saying that to have knowledge of the universe would give you a godlike perspective.

Similar confusion surrounds statements from Albert Einstein when he famously said “God does not throw dice” in expressing his difficulty with the uncertainty principle in quantum mechanics. In a recent biographical TV series “Genius”. Einstein is not portrayed in any way as a religious person or a man of faith. His defense of the persecution of his own Jewish people appeared to be more based on human rights concern rather than devotion to his religious heritage. It’s pretty clear that Einstein was speaking metaphorically about God rather than from a position of faith.

While this image of Hawking walking among the stars isn’t as blatantly as religious as those depicting Steve Jobs in heaven talking to God, it does presuppose a type of afterlife which Hawking pretty clearly had rejected. The Time article quotes an interview in which he says

“I regard the brain as a computer which will stop working when its components fail,” he told the Guardian. “There is no heaven or afterlife for broken down computers; that is a fairy story for people afraid of the dark.”

Personally I consider myself a man of faith and a man of science even though many find these two disciplines to be incompatible and mutually exclusive. Without getting into that debate, I have to also say I have the deepest respect for those who are devout atheists or agnostics because at one point in my life I was very much an agnostic and I appreciated those who respected my beliefs.

On the other hand, such depictions are an expression of our own personal beliefs about the person. They are an artistic expression of the artist’s reaction to the death of someone they admired or respected. I believe in an afterlife despite the lack of scientific evidence. That is the nature of faith. I tend to believe that heroes of mine who happened to be atheists such as Stephen Hawking, Albert Einstein, and Isaac Asimov who have led exemplary lives and contributed to the good of the world are enjoying Paradise in an afterlife despite their disbelief in an afterlife while here on earth.

So in some respects the image in question expresses my beliefs about the fate of Prof. Hawking whether that image reflects his beliefs or not. Despite his espoused atheism and his expression that religious beliefs were fairytales, I would not describe him as blatantly anti-religion or radically disparaging of those with religious beliefs along the lines of someone like comedian Bill Maher. I would hope that he would understand that such a depiction expressed the artist’s wishes for him rather than be offended by it.

Inappropriate tributes to the dead which disrespect their beliefs and desires are a mild form of prejudice. They are an imposition of one’s own worldviews onto that of another. I think they are relatively minor offenses but there are other forms of prejudice that are more destructive. Racism, sexism, religious intolerance, LGBT intolerance and ableism are all impositions of one’s own worldview one to another.

Perhaps it is disrespectful of Hawking’s atheist stance but is that image ablest? What constitutes ableism? Is it the same as other forms of prejudice such as sexism or racism?

Apart from this particular image, there have been other statements such as “He is finally free of his burden”. While I don’t have links to such statements, I don’t doubt that they exist. And in some respects claims of ableism about such statements are more credible than the charges against this particular piece of art.

I can understand how people who are especially sensitive towards ableism might see that expressed in this image but I do not. Let me explain upfront that anything I’m about to say should in no way be construed to discount ableism as a real and destructive thing. Ableism exists and it needs to be confronted in the same way as any form of prejudice. However I really believe some of what is labeled as ableism is unjustified.

Ableism, racism, and sexism have much in common. They are all distorted worldviews which unjustifiably proclaim the superiority of one group of people over another. They denigrate and dehumanize classes of people. They are born of ignorance. They are born of fear. In extreme cases the purveyors of these prejudices are blatant and unapologetic. But the most insidious forms of these prejudices are those in which the believers are unaware of their innate negative biases.

I believe that this subtle unconscious form of prejudice constitutes 99.9% of ableism. You would be hard-pressed to find someone who would openly speak out against people with disabilities in the same way that we see unapologetic denigration of races, religious beliefs, women, or sexual orientation. It takes a pretty hard core Nazi-like person to speak disparagingly of the disabled.

It is common for people with prejudices to deny them. We have seen obvious racists declare “I am the least racist person you’ll ever find.” The most misogynistic men will proclaim their love and respect for women. Religious bigots full of intolerance hypocritically express a devotion to love fellow all human beings.

In contrast, I believe that when most people have an ablest attitude, they are genuinely unaware of the mistake of their perspective. They are almost always uninformed well-intentioned people who lack the knowledge or perspective to see the mistake of their attitude. Unlike racism, sexism, or religious hatred, people expressing ableism are more often genuinely unaware of the hurtful nature of their misperceptions. Expressions of ableism rarely are an exposure of underlying core beliefs of the person in the way that other forms of prejudice are an expression of basic character flaws. They are more easily educated and converted away from their mistaken understanding of people with disabilities.

Ableism is most often expressed in the form of pity towards the disabled person. They feel sorry for us in our horrible condition. Despite the inappropriateness of the pity and the hurtful nature of being pitied, such expressions come from a legitimately well-intentioned motivation. The condescending attitude comes not from an egotistical sense of self superiority but from a genuine misunderstanding of what it’s like to have a disability.

All prejudice is driven by fear of loss. White supremacists fear the loss of their power and perceived superiority. Sexists fear the loss of their male dominance. Religious bigots fear that alternate belief systems challenge their own beliefs and sense of certainty.

But in the case of ableism, it is the genuine and legitimate fear that someday they will end up with a disability of their own. There is a sense of awe and amazement that someone can persist in spite of a disadvantage which they themselves believe unsurmountable. The fear driven amazement is expressed in condescending, hurtful, and even dehumanizing ways. So even though ableism is not as inherently evil in its origins as other forms of prejudice, the effects of it are no less destructive.

All forms of prejudice are harmful. That harm is very personal to its victims. Prejudice must be confronted, exposed, attacked, denounced and discredited. Although it is difficult to eradicate among its believers, through thoughtful education its spread can be halted. But in our zeal to do so, there is always the risk of seeing such prejudice were it doesn’t really exist.

I am reminded of the joke about the guy who goes to a therapist and the therapist administers an inkblot test. “What does this image remind you of?” the therapist asks. The patient replies “sex”. “What about this?” Again he replies “sex”. As each abstract image is shown to the patient he replies “sex”. The therapist says “Mr. Jones has it occurred to you that you’re obsessed with sex?” Jones replies “Me? You are the one with all of the dirty pictures!”

Sadly in the face of all the real sexism, racism, and ableism… Some people find it where it does not exist. In some respects I think that may be the case in this particular circumstance. I don’t think this particular image is an expression of even subconscious ableism.

It depicts Hawking walking among the stars out of his wheelchair. As evidence that Hawking might not have been offended by the image in that way, I offer up the fact that he had booked passage on a Virgin Galactic flight into outer space where he would experience zero-g. In his New York Times obituary linked here there is a photo of him about halfway down the page showing him out of his wheelchair floating in simulated zero gravity. He is on board a so-called “vomit comet” airplane which flies a parabolic arc inducing a freefall. The smile on his face and the fact that he did not go about this adventure while continuing to be strapped into his chair (which he could have done) tells me that an image of him floating free from his chair would have in no way offended him. While you might point out that the artwork in question depicts him upright rather than floating at an odd angle, I don’t believe that’s a significant difference.

While I am sympathetic and respectful of those whose anti-ableism sensitivities are triggered by such an image, I think there is a significant difference between ableism and other forms of prejudice that make some of it unjustified. I do not believe that all expressions of dislike of a disability are necessarily a bad thing. I think they represent the reality that having a disability is legitimately an undesirable situation.

That doesn’t mean that everything about having a disability is bad. In my own tribute to Stephen Hawking, I explained that the reason that I so admired him and considered him a role model despite my natural tendency to avoid role models was that he had made positive use of his disability. Because of the limitations imposed on him by his physical condition, he adapted his methods of reasoning to rely upon mental visualization techniques rather than writing out derived equations as is the usual strategy. This gave him insights to the cosmological questions he was pondering that had escaped notice by other physicists in his field. So there was an aspect of his disability that was undoubtedly an asset. Recognizing that in some ways my disability is a God-given gift or from a non-theological perspective simply asset in my life, I felt a connection to Stephen Hawking. I wrote in my tribute to him “Understanding that Hawking had similarly turned his disability to his advantage was a conformational data point to prove my hypothesis that having a disability wasn’t all bad.”

The clichéd proverb states “When life gives you lemons… make lemonade” acknowledges the fact that lemons are sour but you can still make something good from them. It doesn’t deny the fact that your life has taken a negative turn. It only proposes that such negatives can be turned around into positives.

All prejudice presupposes an illegitimate or insignificant difference between groups. One race is considered superior to another race for no justifiable reason. Any measurable differences between races can always be justifiably explained as being caused by the effects of institutional racism rather than being justifiable reasons for racism. Sexism against women is not based upon the legitimate biological differences between men and women but is rather a defense of institutional and cultural domination of men over women. Hate against different religious groups or directed towards sexual orientation have their roots in belief systems rather than measurable superiority. Such prejudices are inherently subjective rather than objective.

But in the case of ableism, there are objective, demonstrable, measurable differences between able-bodied people and people with disabilities. These differences should not be used to denigrate the value and basic humanity of people with disabilities. Ableism is wrong. It is evil. It is real and should be confronted and stopped. But because people with disabilities are measurably different than able-bodied people, not every attempt to discuss these differences or to describe a disability in a negative light is in fact evil ableism.

In order to live a productive life with a disability, it is absolutely essential that one come to terms with one’s condition and to accept it as a part of themselves. It is okay to identify intimately with one’s disability and to embrace the positive aspects of it. But to deny that there are negative aspects to it is to deny reality.

I offer the following challenge to people with disabilities. If someone presented you with a magic button that you could push that would instantly remove your disability without robbing you of the insights, perspective, and giftedness that your disability has provided you, would you not push that button?

No matter how accepting I am of my situation… No matter how much I view my disability as not only an asset but literally a gift from God above. I would push that fucking button in a millisecond. My guess is that the vast majority of people with disabilities would do so as well no matter how deeply they embraced their current condition.

The difference between having a disability or being of a particular race or gender is that by its very nature it has the power to enslave you. The enslavement of race or gender is externally imposed. The enslavement of disability comes from the disability itself.

Did black people like being slaves? Do they enjoy the economic disadvantages imposed them by their race? Do they embrace being presumed guilty and gunned down in the streets by racist police? Of course they do not. It doesn’t mean they don’t want to be black or can’t be proud to be black.

Do women enjoy making 70 cents on the dollar compared to men? Do they enjoy the degradation and sexual abuse? Recent events show that we are finally listening to their expressions about the extent of this degradation. While they fight to be free of such limitations it doesn’t mean they don’t want to be women.

The desire to be free of the disadvantages of a disability is not an assault on one’s identity as a disabled person. Much of what is mistakenly labeled as ableism is NOT an expression in the belief of the superior value of able-bodied people over disabled people. It is a legitimate recognition of the genuine disadvantages of disability.

Many of the negative aspects of having a disability can be mitigated by changing people’s attitudes. By changing society. By changing negative stereotypes. By educating people. But having a disability is inherently, objectively, measurably a disadvantage. It is legitimate and non-ablest to point out these differences. It is legitimate to want to be free from these inherent disadvantages. And it is not only legitimate but praiseworthy to hope for others to be free of those disadvantages.

Part of the problem comes down to evolving terminology. We have evolved our language in such a way that it is driven more by the forces of arbitrary political correctness rather than logical reasoning. Words are abused in such a way that they lose their legitimate meaning. I’ve talked about this before in other essays but I will try to summarize my beliefs here.

I have a “disease”. It is a genetic neuromuscular disease called Spinal Muscular Atrophy Type 2. It is part of who I am. I literally would be a different person without it because it is genetic. Other diseases are caused by bacteria or viruses such as polio or AIDS. Similarly there are medical conditions caused by outside forces. Cerebral palsy is typically a result of anoxia during childbirth. Spinal cord injuries come about by physical trauma. All of these are “medical conditions”. Short of a medical cure or some natural healing process, these don’t go away. They are an undeniable reality.

My disease and any other medical condition results in a “disability”. I am literally dis-able to do certain things. I can’t walk. I can’t take care of my personal needs. I cannot feed myself. I have virtually no use of my arms. These are things that objectively I cannot do. There is truth in the abused cliché “everyone has a disability.” You can’t fly without an airplane. You can’t lift 5000 pounds with your bare hands. You are literally dis-able to do these things. The difference is, you don’t expect to be able to do these things and nobody expects you to. Nobody else can either.

That’s where the word “handicap” comes into play. Unfortunately is a word that has fallen out in favor but it still has an important legitimate meaning and use. Your handicap is the way that your disability interacts with your environment. When a disability restricts you from doing the things you want to do and/or that the world around you expects you to be able to do then it becomes a handicap. Nobody expects you to lift 5000 pounds with your bare hands or fly like Superman. And even though it might be fun, that disability really doesn’t adversely affect your life. Being able to walk, care for myself, engage in the types of physical activities that most people is something that I could reasonably want to do and that the world about me expects me to be able to do.

People militantly declare “I’m not disabled”. Bullshit! That’s denying reality. You have a disease or medical condition. Willing it away or denying it doesn’t work. Short of a medical cure, you are stuck with it. Similarly that disease or medical condition gives you a disability. Again willing it away, denying it, ignoring it doesn’t work. Handicaps are different. Handicaps can be changed. You can overcome handicaps. Change my environment. Put me in an environment with curb ramps, elevators, accessible transportation. Provide me with affordable assistant technology such as wheelchairs, adaptive computers, alternative communication tools. Adjust society’s expectations of me. I can eliminate my handicap. These strategies will never cure my disease, remove my medical condition, or give me abilities that I will never have. They do eliminate handicaps.

One of my problems with the shift from the term handicapped to disabled is that it is applied to assistance programs. By establishing programs for disabilities rather than handicaps we are saying that the disability, in and of itself, entitles you to assistance. I know of people with disabilities who do not have a handicap and do not need or deserve any sort of assistance. Apart from medical research, no benefit or program is ever going to get rid of a disability. But appropriately administered government and private programs can and do eliminate handicaps.

Those who declare “I’m not disabled” or “don’t call me disabled” are denying reality. Scream that you are not handicapped and I will support you. On a good day neither am I. Deny your disability and you are living in fantasy land.

Denying a disability exists is one extreme. Denying the negative aspects of disability is another extreme. There has to be a middle ground in which you can embrace the giftedness of a disability and own it as part of your identity without denying the reality of the inherent disadvantages to it.

Anything that diminishes our humanity or is an expression of a lack of respect for our humanity and free will, regardless of what kind of -ism it is, must be challenged, intolerated, and eliminated. But crying wolf and unjustifiably accusing people of such denigrating attitudes where they don’t exist only serves to perpetuate that which we are trying to oppose.

Afterward

This note is added April 14, 2018.

Stephen Hawking was interviewed in an episode of Star Talk by host Neil Degrasse Tyson. The episode aired shortly before Hawking died. I just got around to watching it today. In it, Tyson asks “Stephen, you’ve been in that zero G airplane, I’ve always wanted to go. I wondered where it felt like for you.” Hawking replies (as they show photos of him floating in zero G smiling) “It was wonderful to float weightless free of my wheelchair. I could’ve gone on and on and on.” For me that definitively ends the debate on whether or not postmortem depictions of him free of his wheelchair are appropriate for not. The words “free of my wheelchair” are his words. And he didn’t say “it was a fun experiment one time”. Instead he said “I could’ve gone on and on and on.” Case closed.

A Personal Reflection on My Role Model Stephen Hawking

I have to share my thoughts on the passing of Stephen Hawking. The renowned physicist and pop culture icon who expanded our boundaries of knowledge of the nature of the universe did so while fighting a lifelong battle with ALS motor neuron disease. His iconic electronic voice is the most famous piece of assistive technology for the disabled ever created. He passed away today March 14, 2018.

I was born with a genetic neuromuscular disease known as Spinal Muscular Atrophy type 2. Like Hawking’s disease ALS, my own disease SMA affects the motor neurons. Also like Hawking, I’ve had a lifelong passion for science. I’ve always been a curious person but that curiosity was given an outlet somewhere around fourth or fifth grade when I discovered science. I have a logical mind and it was obvious that scientific pursuits were within my grasp despite my own physical disability.

It might seem obvious that Stephen Hawking would be a hero and a role model for me but I was not always anxious to embrace role models. He earned that title with much difficulty. Let me explain.

With my passion for science and intellectual pursuits, I was especially fascinated by stories I heard about Albert Einstein. He passed away in 1955 just a few months before I was born but I knew that he was considered by consensus “The Smartest Man in the World”. In fact the name Einstein has become a synonym for genius. For example “Smartass! Do you think you are some sort of damned Einstein?”

I learned that not only was Einstein considered The Smartest Man in the World, he was actually a kind of a celebrity and pop cultural icon. He was the intellectual equivalent of a rock star in an era before rock ‘n’ roll.

In some ways I felt cheated that I was living in a time that did not have an obvious successor for both the roles of Smartest Man in the World and intellectual pop culture icon. While scientists such as Carl Sagan, of whom I was a great fan, achieved celebrity status and he was a man of great intellect, he did not rise to the level of Einstein as a renowned genius. I always felt there should’ve been some sort of committee to decide who was Smartest Man in the World. Oh sure they give out Nobel prizes in physics, chemistry etc. but even those people typically only occupied the news cycle for a few seconds after winning their awards. There was no heir apparent to Einstein and it didn’t seem to bother anybody except me.

I can’t say for sure when I first became aware of Stephen Hawking. But he immediately became a hero for me. Not only was he fast approaching (and eventually reached) the status of consensually the Smartest Man in the World, the fact that he did so with a severe disability was an added bonus for me. In more recent years he definitely has become the intellectual pop culture icon for which I longed. Others agree with me that he was as iconic as Einstein. In Hawking’s New York Times obituary it says:

“Not since Albert Einstein has a scientist so captured the public imagination and endeared himself to tens of millions of people around the world,” Michio Kaku, a professor of theoretical physics at the City University of New York, said in an interview.

It is speculation on my part because I did not experience the Einsteinian era myself but I would say he fulfilled that pop-culture role even more than Einstein himself. Not only was Hawking a best-selling author and the subject of multiple documentaries and dramatic biopics, he had cameo parts in TV shows such as The Simpsons, Star Trek: The Next Generation, and The Big Bang Theory. The latter of those might never have even had a title were it not for Hawking. His electronic voice is much impersonated by standup comedians. Although the times are different, I really don’t think Einstein achieved those levels of celebrity.

For some bizarre reason, most of my life I’ve not really found myself in need of an inspirational role model. I looked at other famous people with disabilities with a bit of cynicism. In my autobiographical magazine article “The Reunion” I told the story of a group discussion we had in my high school years in the early 70s where I expressed my cynicism about such role models.

“You hear all these stories about the ‘Super-Cripple’ types who make it in the world and are successful and are supposed to be our role models,” I said. “But I’m not FDR or Stevie Wonder or that girl from ‘The Other Side of the Mountain.’ Where did they get that strength? How did they overcome their handicaps? What do I do to tap into their magic that lets them cope or achieve or be somebody?”

Nobody could tell me.

And I then realized that nothing magic was going to happen. The way to do it was to just do it. Just be. There’s no magic.

I’ve also felt frustrated by such super cripples. I’ve often stated in conversations that when I was very young, all a kid with a disability had to do to get publicity was sit in a wheelchair and look cute. I had been a bit of a poster boy for United Way when I was 10 years old and for Goodwill Industries also at around that age. I have been the subject of TV news items and newspaper articles in the early 80s when I designed a special piece of communication software called VersaScan for my friend Christopher Lee who had severe cerebral palsy. The idea of a disabled software engineer developing something for another disabled person made for a unique human interest story.

But as the years rolled on, it became more and more difficult to mine publicity coins. There were paraplegic mountain climbers. Wheelchair users were an everyday part of marathon races. Paralympics and Special Olympics are well known and well covered institutions. When I was young there was no Make-A-Wish Foundation yet these days they have a monopoly on the “sit in a wheelchair and be cute” phenomena. Perhaps no one raised the publicity bar higher than NPR journalist John Hockenberry who was a paraplegic war correspondent in Afghanistan. I have been known to say jokingly “How the hell does the ordinary gimp get any ink these days an atmosphere like that?” Yet that joke thinly hides my jealousy and cynicism. I do consider people like Hockenberry a bit of a hero. I admire him for his accomplishments. But I never considered him or other disabled people of note to be role models. I never sought to pattern my life after them or draw strength from them.

Yet somehow, whether I felt I needed it or not, Stephen Hawking became not only a person whom I admired for his accomplishments, he truly became an important role model for me.

Sometime around 1995 I watched a documentary about Hawking. It gave me insights into the thought processes he uses to develop his hypotheses and theories. Because he’s physically unable to write out long equations on chalkboards, windows (like the beautiful minds do) or even with paper and pencil, he uses the strategy of visualizing the graphic representations of the equations in his mind. Those visualization techniques have given him insights into those equations that had escaped other physicists. In other words, his physical limitations were in fact an asset that made him a more insightful physicist than his peers.

This whole concept of a disability as a gift or an asset was a concept that was developing in me. I had a growing sense that in my own life, my perspective, my insights, my ability to contribute to society in my own unique ways had been enhanced by my lifelong disability. I won an award for my autobiographical magazine article “The Reunion”. It was voted by the Indiana Chapter of the Society of Professional Journalists Sigma Delta Chi as a “The Best Magazine Feature” in the state of Indiana in 1987. My simple story about coming of age with a disability was considered more newsworthy (or at least better written) than stories about famous AIDS patient Ryan White or the crash of a military jet into an Indianapolis airport hotel. Understanding that Hawking had similarly turned his disability to his advantage was a conformational data point to prove my hypothesis that having a disability wasn’t all bad.

Very shortly after seeing that documentary on Hawking, I found myself in the hospital with a severe case of pneumonia. Although I had wrestled my entire life with a shortened life expectancy and had often found myself obsessed with a fear of death, this particular incident was probably the first time I had felt I was imminently in peril. The doctors discussed with me the real possibility that I could end up on a ventilator. They noted that while it was intended as a temporary solution until I got over the pneumonia, there was a possibility that once I was on the ventilator I might not come off. At that point they started having those difficult discussions about what level of care you want. Living wills and “do not resuscitate” orders are discussed.

With my fear of death only barely under control to the point where I could live my life without obsessing over it, my natural reaction was of course to say that I wanted everything possible to keep me alive. But that standard response now had a new justification. I could say to myself and to others that if someone like Stephen Hawking could lead a productive life while on a ventilator then perhaps I could as well.

For the first time I was able to look at someone as a true role model and say “If they can do it… then so can I!” Previously I had mistakenly thought of a role model as someone whom I should attempt to equal in their accomplishments. Realizing that I could not be that person, I had rejected the whole concept of role models. What Stephen Hawking taught me was that a role model is not someone whom we should try to equal or surpass. Role models are people who empower us to be the best versions of ourselves.

This brings up the whole topic of “inspiration”. There is a trend these days among many people with disabilities to boldly and militantly declare “My purpose in life is not to inspire you!” I can understand the roots of this complaint and I partially agree with it. I think the problem is when someone says “you are an inspiration to me because of your disability” it often comes from a place of pity. People don’t necessarily understand that it comes from pity. They don’t intend for it to be. And even when it does not come from pity, it is often perceived that way by the disabled person. Not only does pity play a role in this equation… There is also an undercurrent of guilt at play. People are made to feel guilty for their good fortune. When they admire or are inspired by someone with a disability it often comes from misplaced guilt that they are healthy. There is also a sense that they underestimate their own ability to deal with such a challenge should they ever be unfortunate enough to end up with a disability of their own. I try to remind people that they underestimate their own capabilities when they feel that way.

When we hear that we are “an inspiration” it often comes across as a bit condescending. What we hear is “Oh look at the poor little handicapped kid. Isn’t it special that he even gets out of the house.” It’s a bit ironic and admittedly hypocritical that I lament the passing of the days when “sitting in a wheelchair and being cute” was sufficient to get publicity yet I decry the condescending attitude behind that faint praise.

It is the goal of every disabled person to be as normal as possible. So to be praised in a way that implies our disability, in and of itself, is a source of “inspiration” is easily rejected by us. We want to be known for our accomplishments and our abilities and not for our disability. So I sympathize with the philosophy of “I don’t exist to inspire you”.

On the other hand, in admitting that someone like Stephen Hawking is a legitimate role model and having a deeper understanding of the true purpose of a role model, I no longer tend to reject it when people say I am an inspiration to them. I don’t mind seeing myself as a role model. When people express feelings of admiration or inspiration attributed to Stephen Hawking, it doesn’t come out of a sense of “oh the poor guy in a wheelchair I feel so sorry for him”. He is admired and respected for his accomplishments in the disability is only one facet of that admiration.

It has been encouraging to me the way that people with disabilities have been recently portrayed on reality competition shows such as American Idol and Dancing with the Stars. While the judges of those events do tend to overuse the word “inspiration” in their commentary on these disabled contestants, they do also make it clear that they are forced to judge the person on their talent. They make sincere efforts not to be swayed by the disability or other inspirational natures of their personal stories.

So while I agree that I don’t exist solely to be your inspiration, if I do inspire you by my accomplishments then I have no difficulty with that. My evolution of attitude in this area is thanks to the inspiration of my role model Stephen Hawking.

One of the other interesting stories from that documentary in the mid-1990s had to do with Hawking’s position at Cambridge University. He told the story that there is an old ledger that has been signed by every member of the faculty of that institution. In 1997 he was appointed to the Lucasian chair of mathematics at Cambridge. It is a post once held by Isaac Newton. Someone realized he had never signed the ledger. So with great difficulty they placed a pen in his hand and he signed his name to that ledger recognizing himself as one of the legitimate successors of Isaac Newton. He then calmly stated “It was the last time I ever signed my own name to any document.”

I was in awe of that story. It brought tears to my eyes that the last time he signed his name was in such a momentous and meaningful way. I remember lying in the hospital in 1995 telling that story to my friend Judy. I wondered what would be the last time I was ever able to sign my name by myself. I already did it rarely. She speculated perhaps I would someday sign my marriage certificate to the love of my life. Perhaps that would be a fitting and momentous final signature.

That brings us to another way in which I admired Stephen Hawking who was married and had three children. I had long recognized that the odds of me finding a wife or being able to have a family and children would be quite a long shot. It led me to a mistaken belief that any time a woman took any interest in me, I had to do everything possible to try to direct that relationship into a romance that would someday lead to a happily ever after ending. It took me some time to appreciate that this wasn’t a good strategy. I eventually learned to focus my energy on building strong and meaningful friendships that would be fulfilling lifelong relationships even if they were not romantic or marital. My successful relationship with Judy is a testament to the success of that strategy.

But as I stated before, the goal of most disabled people is to be as normal as possible and so I admired Hawking for having a wife and children despite his disability. Although extramarital affairs, divorce, and remarriage are not typically thought of as admirable or praiseworthy, they are in fact very much normal. So when I heard that he divorced his wife Jane in 1995 and married his caregiver nurse Elaine, I had to give him an “attaboy“ for doing such a “normal” thing. He later divorced his second wife in 2006. He maintained a friendly relationship with his first wife, his children and grandchildren. His first wife’s memoir “Travelling to Infinity: My Life with Stephen” appeared in 2007, and was made into the Oscar-nominated film “The Theory of Everything” in 2014. It won the BAFTA award for Best British Film and Eddie Redmayne won best actor Oscar for his portrayal of Hawking.

As it turned out, the last time I ever signed my name was not on a marriage certificate. Instead it was a few years ago when I signed some legal documents establishing a special needs trust that hopefully will provide some financial assistance in the event of my father’s passing. I also signed power of attorney and designated medical representative authority to my dad. It includes an advanced life directive that indicates I want everything possible to keep me alive as long as I have mental capacity of some sort.

I’ve already mentioned there are similarities between Hawking’s disease ALS and my disease SMA. The parallels in our medical conditions became deeper 15 months ago when I ended up in the hospital again with severe respiratory problems. This resulted in me needing to have a tracheostomy and spending several days on a ventilator unable to speak. I found myself wishing that I had Hawking’s electronic voice. The inability to speak over several days was clearly the most difficult challenge I had faced in my over 60 years as a disabled person. I chronicled those events in my essay “Pray That They Listen to the Man with No Voice”. I still use a ventilator at night and have struggled to adapt ways to communicate while on the vent. I’m exploring various communication techniques such as open source speaking software known as CoughDrop and other assistive technology solutions.

I had not done much work in the area of assistive technology since my work in the early 1980s on VersaScan. However since that hospitalization a year ago last December, I’ve focused a great deal of my efforts on developing assistive technology not only for myself but for others. My efforts in the field of assistive technology have motivated others to take up the cause of open source solutions for the disabled. Many have said that my work in this field has been an “inspiration” to them to take up the cause of assistive technology as well. I have no problem with this. Again this is related to my concept of my disability as an asset. There are more talented engineers and programmers then I am working in the field. But they don’t have the perspective that I have as an actually user of the technology. I bring insights to the discussion that no other contributor can provide.

Stephen Hawking is yet again a role model and inspiration in this area. His iconic electronic voice is the most famous piece of assistive technology ever created. As technology has evolved, speech generation has improved to the point where the voices of Siri, Alexa, and other digital persona are every day experiences. Hawking resisted the opportunity to upgrade is rather robotic electronic digital voice to a more natural sounding one. He said that the outdated technology of his speech generation equipment had become so closely identified as “his voice” that he could not imagine changing it. To me this illustrates the intimate relationship that disabled people have with their assistive technology. It truly becomes a part of them. It’s one of the main reasons that my former software company was called “Cyborg Software Systems” and that I still go by the online handle of “cyborg5”. My relationship with my assistive technology is so intimate that it becomes part of me in the way that the mechanical aspects of the cyborg are united with its biological aspects.

I mourn the loss today of my hero and role model Prof. Stephen Hawking. But I really don’t feel very sad. He truly deserves the cliché description of “a life well lived”. Having been told in his 20s that he only had a few years to live, he worked his ass off to contribute something to the world and in the end proved the experts wrong by reaching the ripe old age of 76. I too was told I would not live very long but at age 62, I’m similarly proving the experts wrong.

This brings to mind the famous Vulcan salutation “Live long and prosper.” Certainly Stephen Hawking did so and the universe is a better place because he did.

Links of interest.

My Life in Review: 2017

Last year I wrote a top 10 list of the important stories of my life for the year 2016. It was a very eventful year and it really didn’t take much effort to come up with 10 different things to occupy my list.

In some respects is been a less eventful year in that there have not been 10 big topics. That doesn’t mean it has been uneventful. This year the big news items have been more broad themes rather than distinct issues or events. Also in some ways it seems that did not happen are almost as newsworthy as the things that did happen.

Rather than make an enumerated top 10 list like I have done in some previous years, I’m just going to talk about the big themes of my life without trying to arbitrarily divide them into 10 individual events.

Adjusting to Life With a Trach

I came home from the hospital from my respiratory problems and the installation of my new trach on December 28, 2016. The consequences of having new trach affected nearly every part of my life for this past year. Some of it was directly related to the trach and other items were sort of a side effect of the uncertainty of my health on a day-to-day basis.

Having a trach meant that I was no longer using a CPAP but instead used a ventilator. Like the CPAP, I only used the ventilator at night. There was quite an adjustment learning how to manage the trach, getting a routine for getting me off and on the ventilator each day and coming up with ways to communicate while I was on the trach and could not talk.

I have the ability to use my laptop connected to my bedroom TV by just pressing three buttons. I set up a system of ready-made messages in the form of off-line static webpages that I could click on using the buttons as a mouse control. These messages gave dad step-by-step instructions on how to get me off the ventilator. Of course after a month or so it had become so routine he could just come into my room in the morning and say “Are you ready to get off” and I would wiggle my eyebrows up and down which is my way of saying “Yes” and he would go from there.

Windows 10 also has a built in on-screen keyboard that does a primitive single switch scanning method that allows me to type anything I want. Unfortunately it is only single switch, not dual switch, which makes typing extremely slow and inefficient. It does have a word prediction capability but it is not nearly as sophisticated as what is available on my iPhone or iPad under iOS. I’m still using it to type messages when necessary.

Over the first few months my routine was that I would wake up in the early hours of the morning say about 4 – 5 AM and could not get back to sleep. I would need to roll over on my right side to get comfortable. That meant we had to temporarily take me off of the vent, put in the speaking valve so I could talk, roll me over and I would be able to tell dad what I needed in the way of adjustments, and then put me back on the vent.

Once lying on my side I could no longer see my TV screen connected to the laptop so I could not type messages. So I purchased an iPad 2 mini and propped it up using a 3D print stand. Here’s a blog post about the new iPad and how I use it.

How I Sleep Better Thanks to My New IPad

However in recent months I’ve been able to sleep reasonably well until about 8 AM when dad wakes up. So I’ve not been turning over on my side and have not needed the iPad as much as I did early in the year. It’s still available if I need it. If I ever end up in the hospital again, it will be an important part of my communication system.

Early in the year right after getting out of the hospital, I didn’t really have the stamina to stay up out of bed as much as usual. If I went to bed early, it often meant that I had to skip one of my G-tube feedings because it’s dangerous to do a feeding while lying down flat. So we quickly decided that it was time to get me a hospital bed. This will allow me to take a feeding while in bed and to partially elevate for at least 30 minutes after the feeding to avoid possible reflux and aspiration. The ability to partially sit up in bed was also more comfortable when using the bedpan for bowel movements. Of course there was the usual difficulty of getting insurance approval and getting the vendor to return phone calls, fax forms, etc. but we eventually got the new bed and it’s working out well.

Nursing and Home Health Aids

When I first got my G-tube in May 2016 it meant that my home health aide could no longer feed me my lunch. Although the process of doing a G-tube feeding is pretty simple, the rules say that a CNA aide is not allowed to deal with a G-tube. Now that I have a trach, the restrictions are even tighter on what a CNA can do. Most notably they are not allowed to be alone with me in case my trach needs suctioning. Dad typically would do his grocery shopping on Tuesdays while the aide was here getting me dressed. He would also schedule doctor’s appointments during the morning when they were here. Or occasionally if the aide was free we would get them additional hours to stay with me in the afternoon.

Although all of my case management people insisted that they would be able to get me nursing hours to take care of these kinds of situations, it didn’t happen until late in the year. Initially we had some nurses doing visits twice a week just to check up on me and see how I was doing with the new trach. They were able to resolve some issues with the pharmacy where I could not get nebulizer medicine. But other than that, these biweekly visits didn’t do much. These nurses were only able to do brief visits and were not in the business of staying with me for any reasonable amount of time while dad would go out. We needed a different agency for that.

It wasn’t a problem of getting authorization. The problem was finding an agency that could staff the position. Apparently it’s easier to get a nurse for eight hours a day on a regular basis then it is to get one for a couple of hours a week like we needed. At one point we thought we had nursing assistance lined up. However it turned out they were going to try to send ordinary CNA people even though that was against the rules. That plan got rejected by Medicaid and I don’t know if it was my case or a collection of cases for which that agency eventually lost its accreditation.

Dad had a variety of health issues which we will discuss in a later section. This meant that in addition to his normal doctor’s appointments he had lots of other appointments and procedures. That meant that either Carol had to take time off work or that our friends the Byrams or Brakes had to stay with me.

The aide that I had before I went to the hospital was a nice gal named Riah. In my absence she had rescheduled other clients and was not able to work for me every day. Initially she split days with another girl named Brooke. Brooke eventually got tied up with nursing school and after just a few weeks I had Riah back full-time. Additionally we got authorized for seven days a week where previously we had only been able to get six days a week.

Riah is a hard worker and a good friend but her life is very complicated. She is a single mom of six kids. One of them has ADHD and so has had numerous issues at school. Her three-year-old has severe respiratory problems which has had him in and out of Riley Children’s Hospital on many occasions. He is currently in Riley awaiting a lung transplant. All of the above plus car repairs has meant that she has missed a lot of work. It’s not practical to train another aide as a backup so many occasions we’ve had to do without help. However when she is here, she does such a good job and we get along so well that it’s worth dealing with her absences.

Eventually we were able to find an agency that could supply a nurse for a few hours a week so dad can run errands and go to the doctor. We are authorized for 15 hours per month. If we use two hours per week for dad to do his regular grocery shopping, that leaves us about seven hours per month for doctor’s appointments and other activities. We were assigned a nice guy named Mohammed. We get along really well. He’s fascinated by a variety of religions in addition to his own faith of Islam. We get into lots of friendly religious discussions mostly me explaining various parts of Christianity to him. Along the way I’ve learned some interesting facts about Islam as well. We’ve become good friends.

Training Friends and Family

The primary reason for having a trach is the ability to suction out congestion that I cannot cough up with my weak lungs. Sometimes I go for three or four days without needing any suctioning. Most days I need to be suctioned one or two times. It is most likely that I need one either early in the morning or later in the day. There is a kind of sweet spot during the afternoon that I am much less likely to need any suctioning. On a bad day if I have a bit of a cold, I can need one every half-hour or 45 minutes for extended parts of the day.

One of the requirements before they would release me from the hospital was that 2 family members needed to be trained in how to care for me. That meant dad and Carol. As a consequence when we could not get nursing help, Carol missed several days of work staying with me while dad had doctor’s appointments. It’s not just the issue of friends staying with me. I also count on friends like Rich and Kathy Logan and Judy and Anne Chapman to take me to movies, concerts, sports events etc.

I go to movies with dad and Carol sometimes but most times I go to movies with the Logans. Carol takes me to hockey games on occasion. As I mentioned earlier, I’m more likely to have suctioning needs in the evening than the afternoon so Carol and I have chosen to go to afternoon hockey games rather than evening games. Most movies are in the afternoon however some of them are around 4 PM lasting until 6 PM or later and there you are getting into the time where I’m more likely to have problems.

In addition to suctioning problems, I’m having more and more problem sitting comfortably in my back brace. By the end of the day the brace rides up under my arms and becomes more and more uncomfortable. Also I seem to have further reduced stamina so my typical day is that I do an evening G-tube feeding at about 8:30 PM and then go to bed right after that. I watch TV or work on the laptop until about 11 PM when dad comes in and puts me on the vent. I generally fall asleep about midnight or 12:30. Because of this reduced stamina and unreliability of my health during the evening, I’ve severely limited my evening activities.

We were reluctant to burden friends with the task of being an amateur EMT. However when I expressed this concern during an email exchange with Barbara Brake, she said “I would think the more EMT trained friends that you had, the better off you’d be”.

As we begin to realize that the nursing help was not coming anytime soon, we finally decided to set aside our concerns and we went ahead and trained various friends how to take care of my new needs. Psychologically this was a huge step for dad and me. Barbara Brake as well as Stu and Pat Byram now know how to do my suctioning as well as do G-tube feedings if necessary.

We also trained Rich and Kathy how to do my suctioning so that we can go to movies together. Initially the first movie we saw after getting out of the hospital was the new X-Men movie “Logan”. When you got friends named Logan and there’s a movie named Logan you just have to go. I think the first movie the three of us went to (along with some other friends from IUPUI) was “Logan’s Run”. Anyway, dad went with us in case I needed suctioning but he really didn’t like the movie. The next movie on our agenda was “Guardians of the Galaxy 2” and I knew that if he didn’t like Logan there was no way he would enjoy sitting through something as goofy and over-the-top as Guardians. So that was the final push for me to suggest to the Logans that perhaps we could train them and do it on our own. They had been waiting for me to reach that conclusion on my own.

Over this year I have missed short portions of couple of movies. Dad and I went to see “Wonder Woman” but I needed a suctioning near the end and we missed the last 15 minutes of the movie because I had to leave early and go get suctioned in the parking lot. After that, we concluded we would carry the portable suction machine into movies and other events with us. At the Traders Point Cinema there is a small, one stall, family restroom that you can go into and it’s a nice place to privately do a suctioning. Carol and I also discovered a family restroom at the Fairgrounds Coliseum where we go to hockey games. At the IMAX downtown we have just found a private corner of the lobby where we could do a quick suction. I also missed a couple of minutes of Blade Runner 2049 while Rich and I had to duck out for a quick suction. I did make it all the way through Dunkirk, Valerian and the City of a Thousand Planets, Guardians 2, Spider-Man Homecoming, Justice League, and most importantly Star Wars: The Last Jedi without interruption.

Missed Events

Although I have gotten out to some events, I’m extremely unreliable. One day dad and I were ready to go out the door to a movie and I started getting congested. We decided at the very last to simply cancel. Of course unless you buy your movie tickets in advance there is no problem with a last-minute cancellation. But for more significant events it’s been very frustrating not knowing if I’m going to have a good day or bad day. On a bad day, I need suction repeatedly and my brace bothers me to the point where I go to bed early. It’s very difficult to plan to spend $100 on concert tickets knowing that at the last minute I just wouldn’t be able to go. It seems like the fates are against me because many years there have been no concerts that I would have been interested in seeing. This year we had Billy Joel, Lady Gaga, The Eagles, the ECHL hockey All-Star game and other lesser events that in a normal year I would’ve been anxious to go to. But I passed on all of them.

Even getting to church has been quite a challenge. I’ve often described myself as a “fair weather Catholic” who only goes to church when the weather is just right. But it seems that has been even more so this year. Not only have I avoided church when it was too hot or too cold or too rainy. Anytime I’m having a bad brace day or a bad lung day I’ve chosen not to venture out to church. To get everything to line up perfectly I’ve only been able to attend mass one time this entire past year. That was just a few weeks ago on the first Sunday of Advent.

I have been blessed by a couple of visits from Father Mike occasionally accompanied by pastoral associate Claire Bain. That has helped me maintain some connection to the church in my absence. Obviously if I wasn’t making it to mass, I could not commit to teaching RCIA this year even though they did offer me the opportunity.

Assistive Technology Work

While in the hospital last December facing all of the difficulties I had with communicating, one of the main consequences of that experience was to rededicate myself to working on assistive technology. I had been promising the folks at Adafruit that I would write a tutorial on how to do Bluetooth switch control for iOS devices. Once I was back home and things were marginally back to normal I begin working on that immediately. Here is the link to that article. https://learn.adafruit.com/ios-switch-control-using-ble

Additionally my main piece of assistive technology I use myself failed. My so-called “Ultimate Remote” had a problem and I ended up pretty much rebuilding it from scratch in March.

The Ultimate Remote is Dead. Long Live the Ultimate Remote 2.0

I also managed to meet up with an organization called ATmakers.org. This amazing organization founded and run by Bill Binko tries to match up makers, high school STEM and robotics groups with disabled people who need assistive technology solutions. Bill and I have become good friends and I’ve done a lot of work with his organization on Facebook to help answer peoples AT questions. We have some long-range plans to design an AT platform which we are going to tentatively call APHID (Adaptive Programmable Human Interface Device).

I’ve managed to get Bill and his group connected with the folks at Adafruit and collaboration has been a phenomenal experience for everyone. Adafruit has really taken up the cause of assistive technology as one of their pet projects. Bill and I have appeared on their weekly show and tell program on several occasions. Bill even was a featured guest on their Ask an Engineer program. Bill lives in Florida but recently on his way to visit a client in northern Indiana he came through Indianapolis and visited with me for an afternoon and evening. We had a great time together.

My relationship with that group is also led me to participate in various Facebook groups related to SMA (Spinal Muscular Atrophy) which is the cause of my disability. There’s a lot of activity in the field because right before the first of the year the FDA approved a new treatment for SMA that is showing great promise for infants who have SMA Type 1. The drug was also approved for older Type 2 patients like myself and Type 3 who have later onset symptoms even though there is not yet any data to support its benefits for these other types of patients. The drug is extremely expensive and administered through spinal injections. Given that it’s likely of having any positive effect on me, I’ve not pursued obtaining the treatments. I have made some good friends in the SMA community. It’s interesting that these very young children ages 1-5 who have Type 1 are approximately the same physical ability as I have as a 62-year-old Type 2 patient. They have trachs, ventilators, G-tubes etc. just like me.

I also participated in a research project by a woman from Stanford University who is studying how the use of social media is helping patients and families with SMA. It’s really amazing that we have these groups because when I was young we didn’t have these kinds of networks or support systems. We were involved in the Muscular Dystrophy Foundation when I was young (different from the Jerry Lewis MDA organization). But most of those patients and families had Duchenne’s Muscular Dystrophy which is a very different disease from what I have. So I didn’t have any information about my own disease and did not know anyone who had the same condition. It’s been really amazing and heartwarming to me to see the kind of interaction that these people are able to have that was unavailable to me when I was young.

3D Printing Activities

I’m continuing to enjoy using my 3D printer. I’ve had to repair and replace various pieces of my joystick mount for my wheelchair. I’ve created other gadgets that help mount my iPhone in such a way that I can take photos and videos with it. Mostly I’ve taken video at hockey games and some this Christmas.

I’ve also enjoyed creating just for fun objects such as puzzles, Easter eggs and Christmas ornaments. This year’s Christmas card had 3D printing as a theme. I also included a tiny 3D printed Christmas ornament in most of the Christmas cards that I sent. In some ways the ornaments overshadowed the card itself. It was one of the first completely original Christmas cards I’ve done in several years. In recent years having run out of ideas I’ve been recycling and updating older cards. My Easter eggs and Christmas ornaments have all been uploaded to thingiverse.com and have been “liked” and downloaded dozens of times.

My 2017 Christmas Card: Santa Adopts New Technology

3D Printed Easter Eggs

3D Printed 6 Piece Star Puzzle

3D Printed Christmas Tree Illuminated by Circuit Playground Express

3D Printed Icosahedron Star Christmas Ornament

How I Made 3D Printed Customized Christmas Holly Ornaments

After having used Blender 3D as my CAD program of choice since I first got the 3D printer in July 2015, I finally decided to start learning Fusion 360. Blender isn’t really designed for 3D printing. It’s more for graphic rendering and animation but I chose it initially because it was open source, free, and I didn’t want to learn 2 different programs: one for rendering and one for 3D printing. But it turns out that although Fusion 360 is an expensive commercial program, it is free to use for noncommercial purposes or companies earning less than $100,000 per year. It turns out that Fusion 360 is not as accessibility friendly as is Blender. It lacks many keyboard shortcuts that I had come to depend upon. But overall because it is designed for applications such as 3D printing and because it allows you to maintain the history of creation of your designs and to make parametric designs, it is turning out to be a much better solution. The learning curve and paradigm shift have been a real challenge.

Unfortunately my 3D printing activities are going to take a brief pause because my heated nozzle quit working yesterday. A replacement part is on order. My printer is over two and half years old and will have to be completely replaced eventually. I already have my eyes on new models but I don’t really plan to buy anything new in the foreseeable future.

Programming Projects

My primary efforts in programming have been to continue the development of IRLib2 which is my library of code that allows receiving, decoding, and transmission of infrared signals using Arduino compatible hardware. It’s the basis of all of my custom TV remotes. The library has become quite popular in the maker community.

The program was originally written only for 8-bit Arduino compatible processors and I have resisted porting it to 32 bit platforms but the increasing popularity of the SAMD21 processor used in so-called “m0” platforms led me to eventually begin supporting that processor. It is used in the Arduino Zero, Adafruit Feather M0, and Adafruit Circuit Playground Express boards. I was even able to work with the people at Adafruit to get them to incorporate IRLib2 into their library of code for the Circuit Playground Express (or as I call it the CPE).

The CPE is an amazing educational platform that includes 10 Neo-pixel color LEDs, a speaker, microphone, accelerometer, photosensor, IR transmit and receive, and I forget what other features. It has also been designed to be used not only with Arduino C++ code, Adafruit is making a big push towards a language called Circuit Python. The Python programming language is used extensively to teach kids programming. The ability to run a specialized version of it on a platform like the CPE makes it an outstanding educational tool.

IRLib 2.02 Increases Support for SAMD 21

So once I had converted IRLib2 to run under the SAMD21 processor I decided I should take the next step and translate the entire library into Circuit Python. This was another huge learning curve and paradigm shift for me. I felt like such a noob trying to program in a strange language. In the beginning it seems like every single line of code that you write requires 20 minutes of Google searches and reading of tutorials just to write one line. Eventually you cross a threshold where you sort of “get it” and from there it’s just the mechanics of translating the code from one language to another.

Announcing IRLibCP — a Circuit Python Module for Infrared Transmitting and Receiving

There is much more programming work ahead of me. Once I got the program running on the SAMD21 platform it made sense to consider the ESP 8266 and other Internet of things type platforms. Also Adafruit is developing new boards using even more advanced m4 processors over the current m0 platforms. I will undoubtedly be spending much of 2018 working on those ports.

Blogging Activities

One of my major goals after my release from the hospital last December was to chronicle the events. I had already started writing about my experiences while still in Seton Specialty Hospital. I finally completed the story of the first days I spent in the St. Vincent ICU. The overall title of that series was “Pray That They Listen to the Man with No Voice”. While I had considered trying to get the story published somewhere other than online, I’ve not pursued that possibility. It still remains an option.

Pray That They Listen to the Man with No Voice

I did begin the telling the second half of the story after I was out of ICU and waiting on my ventilator approvals in the Seton Specialty Hospital. However it’s now been more than a year since those events and the remainder of that blog is incomplete. I will finish it eventually. Although not as dramatic or significant as the first part of the story, I do want to complete that task eventually.

http://mylife.cyborg5.com/long-winded-arent-i/holiday-hospital/click

I continue to do entertainment blogging writing reviews of many of the new TV shows for the fall 2017 season. I’ve not done my periodic entertainment updates as often as I would have liked.

In addition to my personal blogging, I’ve also been authorized to write for the Adafruit blog. Mostly it has been to highlight stories about assistive technology but when I come across any topic that I think would be of interest to the Adafruit maker community, I have gone ahead and posted those articles as well.

Gaming Activities

Although I have played a little online poker this past year, most of my wagering has been picking NFL games. When I landed in the hospital last December I was not able to continue to bet on NFL the latter part of the season. But so far this year I’ve been able to put five dollars on every NFL game this season. I’ve also picked three or four Notre Dame games but mostly NFL. Through week 16 of the regular-season I am up $98.71 for the year.

My biggest wins however were on an unintentional gamble. To transfer money into poker and sports gambling websites the easiest way to do so is through the purchase of bitcoin. Typically I would buy $100 worth of bitcoin and transfer perhaps $95 to the websites and they would charge me a dollar or two in transaction fees. The end result was that over the past couple of years there was about eight dollars worth of change had accumulated in my bitcoin account just from not transferring the full amount. After hearing about the huge surge in bitcoin value I decided to go back and see what that little bit of chump change was worth. Much to my surprise $8.12 had grown in value to over $142. That is significantly more profit then all of my poker and football combined. Just for fun I purchased another $50 worth of bitcoin. That should’ve brought my total to $192. At one point that value increased to nearly $230. As of this writing it’s down to $173. Of course as long as it never goes below $58 I’m still in the black. It’s kind of fun to watch it go up and down each day. I don’t plan on making it any kind of regular investment or gambling platform. I prefer to gamble on things where at least I make some of the decisions myself.

Addition to gambling, I’m also enjoying playing online browser game Travian Kingdoms. I’ve been playing various forms of Travian off and on for over 10 years. But for much of the year I’ve been seriously playing lots of Travian kingdoms. I’ve been partnered up with a great group of people from all over the world including a guy named Max from Italy and his girlfriend Kit who are great people. And my number one partner over the past couple of rounds of the game has been a college student from Poland named Patryk. Although you can play the game for free, you can get advantages in the game by purchasing something called Travian gold. I’ve spent an embarrassing amount of money on the game but I really enjoy it and I’ve made some good friends. I continued to stay in touch with Travian friends I met 10 years ago online.

Dad’s Health

Some years ago dad had a couple of spots of bladder cancer. He continues to have that checked every 6-12 months. It has not recurred recently.

Dad also has a long history of gallbladder problems. He decided it was finally time to do something about it. Gallbladder surgery was scheduled and was successful but in the process they also suggested colonoscopy which revealed some questionable polyps. That led to the scheduling of the bowel resection surgery which did discover some cancer. A follow-up with an oncologist led to a CAT scan that showed no additional cancer. The oncologist recommended not doing a more extensive PET scan. At dad’s age any chemotherapy or radiation might be more harmful than useful. So as long as the CAT scan showed nothing significant going on, they chose not to search for trouble.

Dad continues to see cardiologists on a regular basis and they discovered his heart is in an altered rhythm known as a-fib. It’s not particularly dangerous but it does put you at higher risk for blood clots leading to stroke. He went in for an outpatient procedure where they shock you back into a normal rhythm. However shortly afterwards, the monitoring of his pacemaker showed he was back in a-fib again. His chosen not to pursue any further treatment in that area.

My Additional Health Issues

As mentioned previously, the entire point of having a trach was to allow me to clear out any congestion or secretions that I could not cough up. I’m confident that had I not had the trach I would’ve been hospitalized several more times this year and possibly ended up with serious and/or fatal pneumonia. Ironically in December just about one year from my previous difficulties I did end up with a cold but because I could keep my lungs clear, it never got serious.

A few months ago I had some strange back problems. I’ve had these kinds of issues before but generally some tramadol pain pills were enough to take care of it and it would only last a day or two. This time it persisted. The tramadol and/or Tylenol had minimal effect. I was worried that even though my lungs seemed clear perhaps I had some sort of infection or pleurisy. I spent a day in the ER and they also suggested it could have been pulmonary blood clots. After a series of tests and a CAT scan they found no problems and sent me home. It was still another couple of weeks till the recurring back pain dissipated and I’m pretty much back to normal.

I still have lots of comfort issues with my back brace but I’m managing them as best I can.

Final Thoughts

As you can see, the events of 2017 don’t easily categorize into distinct issues like my usual top 10 list. Everything from my entertainment activities such as sports and movies through my maker activities in assistive technology all somehow relate to the broader issue of my trach and my health issues. So for the most part dealing with the trach and all of the consequences related to that are the one major story and just about everything else somehow is connected to or influenced by that issue.

Overall I would say it’s been a productive year where I’ve done some significant work as a maker and blogger and I’m looking forward to continuing that work in 2018.

May you have a safe and blessed new year.

RIP CompuServe Forums– Service Ending December 15, 2017

To many of you reading this, the headline of this article will cause you to stay “Duh.. What is that?” However those who do not know what a CompuServe Forum is, you are unaware that much of your online experience from message boards to live chat rooms to booking airline tickets and reading the latest news all had its origins in the CompuServe Information Service.

Beginning in the late 1970s before the Internet and before AOL there was an online service called CompuServe. It was owned by H&R Block as a way to generate revenue for unused time on computers. CompuServe was sold to AOL in 1998 and as the Internet grew, both CompuServe and AOL faded into the background.

It cost $5 per hour to use CompuServe but there was nothing else like it at the time. I began using it in 1981 and got involved in a forum called “NIPSIG”. In those days didn’t call them “formes” or “message boards”. They were called “SIGs” or Special Interest Groups. NIPSIG stood for “National Information Providers Special interest Group”. It was a gathering place for writers, journalists and other articulate educated people who discussed politics, religion, and all sorts of interesting issues. It was later renamed “Issues Forum”. My particular area of interest was a section for Disability Issues.

The forum administrators in those days were known as “sysops” or System Operators. The sysop of the Issues Forum was an amazing woman named George Griffith. Her day job was transcribing music into braille for the Library of Congress. I learned shortly after I met online that she was totally blind. However it wasn’t until after I had known her for many months that I also learned she was deaf as well. It was a great shock to me.

I had experienced the fact that online people were unaware that I was in a wheelchair and had been so for my entire life. I discovered what a great equalizer the online experience could provide for someone with a disability. People got to me for who I was, and what I believed and thought rather than how I looked physically.

Georgia gave me the opportunity to be sysop for the disability section which earned me a coveted “free flag”. It meant that I could access CompuServe without paying the $5 per hour cost in exchange for my work there is a discussion leader.

A few years later I moved over to another CompuServe Forum called HSX Forum or more formally “Human Sexuality Support Groups” where I was sysop of a section about the sexuality of disabled people. HSX was the brainchild sexuality authors Howard and Martha Lewis. That forum also included discussion groups LGBT issues, fetishes, survivors of abuse, and a variety of other topics related to human sexuality. It was a unique safe place for people to have serious online discussions about such issues.

Eventually I migrated to the “Graphics Forum” where software developers exchanged code and ideas on a newly emerging format for storing graphic information. CompuServe developed this format called the Graphics Information Format or “.GIF”. To this day people debate on whether it is to be announced “gif” or “Jif” with a hard G or soft G. But we didn’t care how you pronounce it. We were just trying to develop software to decode it. The original standard was published 1987 but the real excitement came in 1989 the advance standard allowed for overlapped sub images. These are the foundation of GIF animations that we see today.

Although I cannot prove it, I am certain I was responsible for creating the worlds first pornographic animated GIF ever developed. I took a GIF of a nude woman using a paint program and some other multi-image GIF encoding software that I developed and I painted on a bikini. Then I animated it so that the bikini dissolved.

One of the subsections the Graphics Forum was devoted to creating an open source graphics rendering program called the Persistence of Vision Ray Tracer or POV-Ray. Eventually that project spun off into its own forum where software developers from around the world collaborated to create a remarkable photorealistic rendering engine that is still in use today decades later.

CompuServe Forums were also maintained by major software development to provide technical support for their products. And if the manufacturer’s themselves did not provide such support, community knowledgeable users were always available to assist you tips and tricks and advice.

Friendships which were forged in the CompuServe Forums in the 1980s have lasted to this day. However today we stay in touch by email and Facebook. I hate to admit that I’ve not logged into a CompuServe Forum in 15 years. So the closing of these forums will not leave a hole in my life yet their passing is still bittersweet. To me it’s sort of like your favorite fast food hangout that you visited in high school is closing down even though you haven’t been back in years. You still hate to see it pass away.

This is only a fraction pioneering features that were offered by CompuServe years before the Internet was invented and probably years before many of you were born.

— Chris Young a.k.a. cyborg5 a.k.a. 70136,62

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Click here for article from Engadget about the CompuServe Forum closing

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 bback 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.