Top 10 News Stories in My Life for 2016

In this time of year all the news organizations are recapping the top 10 stories of 2016. I like to take this opportunity to recap the top 10 stories of my life. In any other year items like getting sued in federal district court for copyright infringement would be the number one item but not in this very busy and eventful year. It comes in further down the list. Actually in any other year any of the top four or even five of these stories could have been number one .

So here are the top 10 news stories in my life counting down from 10 to number one.

10. Major new connections on Facebook

From time to time I do Google searches or Facebook searches for long lost friends. 2016 yielded three major finds that I had been seeking for a long time. My old college buddy Frank Williams who is still playing keyboards in bars and nightclubs just like he was when I knew him 40 years ago at IUPUI. We haven’t gotten together in person yet but we’ve exchanged emails and follow each other on Facebook. Ellie Vinci also from my college days was the first girl who wasn’t in a wheelchair that I ever took on a date. Among other things we did back in the day was see Jaws, and go to a hockey game. She taught me an appreciation for violence on ice. My friendship with taught me the value of a strong nonromantic friendship with a female and became the foundation for many other similar relationships throughout my life. And finally Cheryl Fayette, my date for the senior prom and the first girl I ever kissed. Sadly my reconnection with her on Facebook was postmortem.

RIP: My First Kiss

 

9. Release My First Non-CGI Christmas Card

After making Ray Traced CGI Christmas cards using POV-Ray every year since 1995, this year I created a Christmas card that was a photograph of 3D printed statues re-creating a look of my 1995 CGI rendered card. This was a major accomplishment to get the POV-Ray models converted to something that could be 3D printed. It was the culmination of 18 months of work since I first got my 3D printer in the summer of 2015.

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

 

8. Released IRLib2 Software Library

Several years ago I developed a library of software for Arduino based microcontrollers that sends, receives, and decodes infrared signals such as those used in TV remotes. In 2016 I did a major rewrite to version 2 that took me many months to complete. The new software is much more flexible, expandable, and includes a new 117 page user’s manual. Released as open source for the world to use 100% free. I cannot begin to count the hours I spent on this project in 2015 and 2016.

Announcing the Release of IRLib2

 

7. Built The Ultimate Remote

Somewhat related to item 9 but actually a separate development project I built a new ultimate remote control that not only controls every TV and cable box in the house but uses Bluetooth connection to my new iPhone 6 that allows me to use iOS accessibility switch control features to have full control of the iPhone without using the touchscreen. Both the IR portion and the Bluetooth switch control of the iPhone by using three micro switches that I hold in my right hand. This is the latest in a long series of adaptive technologies I built using Arduino based microcontrollers and represents the most powerful device I’ve ever built in this category. This device was an essential part of my ability to communicate with doctors and nurses during my December 2016 hospital stay.

The Ultimate Remote Control and Why I Built It

 

6. Revolving Door of Home Health Aides

After my friend Rick Ruiz had to quit as my home health aide in November 2015 I’ve spent more than half of the time since then without a home health aide and when I did have them they did not last very long. We’ve had approximately 15 different people. Our longtime agency Acme Home Care could no longer supply a person and we moved to a new agency First Horizon where we are getting much better service. This is been a real strain on dad having to spend so much time taking care of me. However we have recently expanded from six days per week to a full 7 days per week.

 

5. Returned to Teaching RCIA

After teaching RCIA for more than 30 years I had retired because the program had been taken over by St. Michael’s parish. However when the RCIA program returned to St. Gabriel I decided to come out of retirement and teach again. I taught three lessons at the beginning of the year and it was wonderful to return to my most treasured ministry. I’m not sure if I will teach next year but it was good to be back one more time.

 

4. Sued for Copyright Infringement in Federal Court

Was threatened with a lawsuit for the use of a photo of the Indianapolis skyline as the background of my 2013 Christmas Card. Retained a lawyer but negotiations failed and the suit was ultimately filed in June of this year. After spending thousands of dollars in lawyers fees it was finally settled out of court. The details of the case yet to be blogged.

 

3.Stopped Eating and got a G-tube Placed

As my spinal muscular atrophy has progressed my ability to swallow has been severely compromised. I made the decision to stop eating altogether because it was becoming way too difficult. I had a surgical G-tube inserted in my stomach in May of this year. The procedure was supposed to be done outpatient however I was hospitalized for a UTI few days prior to the scheduled procedure so we did it while I was still an inpatient. I still eat occasional soft foods such as ice cream and cake for birthday parties and pumpkin pie for Thanksgiving. I continued to drink Coke and take most of my medications orally although that may be changing soon.

Tough to Swallow

 

2. New Wheelchair Finally Arrives

This April my new reclining power wheelchair with a mouth control joystick finally arrived after a nearly year-long process of evaluating equipment, going through paperwork, having an evaluation from a physical therapist and doctors. Even after the chair arrived we had much difficulty getting me able to operate it and had to build a new joystick mount using my 3D printer. Software glitches and mechanical problems also delayed my initial use of the wheelchair but since then it has operated well and I regained much of the independence I lost in late 2015 when I could no longer drive my old wheelchair.

My New Wheelchair Finally Arrives

 

1. While Hospitalized for Most of December with Tracheostomy Learned of New Treatment for SMA approved by FDA

A simple viral head cold led to a call to 911, an ambulance trip to St. Vincent ER, a tracheostomy and a lengthy wait in Seton Specialty Hospital to get a new in-home ventilator approved. This is the longest continuous hospitalization of my life. The adventure of not being able to communicate while intubated or on the ventilator led to a emotional roller coaster experience that has inspired me to write what may become my next published work after beginning with an extensive blog version. While recuperating in the hospital and waiting on the vent approval learned that the FDA has approved the new drug treatment for Spinal Muscular Atrophy. While primarily aimed at infant Type I patients it has also been approved for use by my Type II children and adults. Although I will not likely benefit from the treatment it is an encouraging sign that others may not have to endure much of what I have lived through for 61 years. The entire hospital experience also illustrated the depth of support and friendship that I have in the maker community which has gone way beyond what I ever expected. This entire month of December could easily be described as the top story of the past decade of my life. The full ramifications of which are not yet known. Extensive blog coverage of these events is still being written.

Pray That They Listen to the Man with No Voice

 

Well that’s it folks. The top 10 news items in the life of Chris Young for 2016. Let’s hope 2017 is a little more calm but just as interesting 🙂

The Intubation Crowd

Fourth in a series.Click here for an index of all of the articles in this series.

I anticipated that I was settled in for the night. They seem to have finished poking and prodding at me and I’ve answered all the questions. The BiPAP was continuing to be a little bit out of phase but I was compensating best I could. However somewhere around 2 AM the “come-and-go” congestion got really worse. I told the nurse I wasn’t doing very well and she could see that for herself. It wasn’t long before I was in yet another of these very serious spells of respiratory distress. We made the decision that I needed to be intubated.

They called for the pulmonary doctor who happened to be one that was familiar to me I guy named Dr. Pfeiffer. He was a partner to my regular pulmonary doctor whose name is Dr. Vohra. Pfeiffer does all of the in-hospital work for that particular partnership. I had had him before as had my mother on many occasions years ago when she was battling lung cancer. He would not remember me or her given the number of patients he sees on a regular basis but I remember him and knew I was in good hands.

It took a while to get everything organized. Residents and interns started showing up. The nurse said to me “You are drawing a crowd”. It reminded me of a running joke I have with my friend Anne Chapman about all of the artistic skills we have based on things we can “draw” such as: I can draw a bath. I can draw a glass of water. I can draw the wrong conclusion. At the time it seemed to me the phrase “I can draw a crowd” might not ever have been on the list that Anne and I had compiled. However prior to writing this blog I dug out the old list and “draw a crowd” was indeed already on it.

Because my mouth doesn’t open very far there’s no way to intubate me using the normal method down throat. I always have to be intubated in my nose. I explained to them that the left nostril was the best one. I told them that occasionally they have used pediatric size tubing. They go in with a scope so that they can see what they’re doing. One of the first times I had to be nasally intubated they just jammed into me blindly and it went really badly. Fortunately the scope method is much smoother. They spray a bunch of medicine in your nose to attempt to numb it. It never does seem to completely numb the pain for example in the way that a shot of Novocain deadens your mouth for dental procedures. Some of it they squirt in and some of it they dab in on the end of a Q-tip. I say it doesn’t work very well but who knows… Maybe it would be much worse if they didn’t do it.

They had some Versed anesthetic available that makes you forget procedures such as this and some other kind of mild anesthetic ready to inject into the IV that have been placed in the back of my right hand. But they didn’t want to give me any of that until they actually had the tube inserted.

While we were waiting for Dr. Pfeiffer to arrive I had a conversation with the nurse and told her that I would raise my eyebrows up and down for yes and wiggle my mouth left to right to indicate no. I can’t really move my head up and down or side to side so that was the best I can do. I asked if they had some sort of chart or paper with the alphabet on it so that we can spell out words. She said that she believed they did have something like that available. Because I can’t point to such a chart with my hand, I suggested that they put a straw in my mouth, hold the chart up in front of me, and I would try to point to it with the straw. I had never actually attempted this but I had been thinking about it many times since the last time I had to be intubated. She said we would try it.

Dr. Pfeiffer finally arrived and began the procedure. He would get the tube just to the point where it felt like it was about to enter my windpipe but he would not put it all away in. I couldn’t figure out what was holding him up. Of course your gag reflex kicks in and the entire process is quite unpleasant. I knew I shouldn’t be talking but at times I tried to ask why isn’t it working? Sometimes I would get really distressed and couldn’t breathe I would try to mouth words like “I can’t breathe”.

I had an amazing sense of dĂ©jĂ  vu because there were probably eight people standing around me working on me and some of them were trying to understand what I was saying to them but there it was one young guy standing in the back who was the only one out of the group that can either read my lips on makes sense of what I was trying to mumble at various times. I recall the first time I ever came out of anesthetic from my intestinal surgery and I was on the ventilator I tried to mouth the words “I can’t breathe”. A young male respiratory therapist on that particular day was the only one who understood me. I wonder is this young man was also a respiratory therapist.

In that previous incident years ago, I had the pleasure to talk to that guy later after I had the intubation tube out. I thanked him for being the only one in a group of supposedly more educated people who were standing around me clueless as to what was going on and that he was the one who understood me. Whoever this new young man was I hope to be able to later have a conversation with him and congratulate him for being the only one in the room who was aware of my needs. Spoiler alert… He was a medical student and I did have an opportunity to talk to him a few days later. We developed a great report and friendship throughout my stay in the ICU. We will have more about him later.

Somehow I became aware that the reason they were having such difficulty is that there was a huge mucous plug that he was having to suction out of the way before he could get the intubation tube into my lungs. The combination of that and my somewhat strange anatomy had made the whole process very difficult. Eventually the tube went in and the anesthetic followed and I was out for the night.

To be continued…Not in the next post but in the following post titled “The First Incident

The Questionnaire

Third in a series. Click here for an index of all of the articles in this series.

We come now to “The Questionnaire”. No I’m not talking about the one that James Lipton uses in “Inside the Actors Studio” that he famously credits Bernard Pivot from his French talk shows Apostrophes and Bouillon de culture. This was a questionnaire I’d never heard before.

Alone with the nurse in ICU room 2615 she began to ask me a series of questions that she said were standard questions asked to incoming patients. Although I had been in St. Vincent Hospital a number of times, I don’t recall being asked these particular questions before. I can’t quote exactly each of the questions. There were perhaps 10 of them. At first I thought it was measuring my general emotional state. I thought they were standard psychological questions about how you feel about yourself and your situation. Are you depressed? etc. However that isn’t exactly what they were going for. They wanted to know if I felt safe in my home environment at the hands of family members and caregivers. The questionnaire I was receiving was designed to root out patient abuse.

I could be philosophical and analytical about being asked the question because they were so far outside my experience I didn’t have to stop and think about the answers. I’ve never felt at risk for abuse from anyone. We probably had 20 or 30 home health aides in the nearly 8 years that we been getting help and they’ve all been great people except for one guy who stole over $100 from my wallet. Even though he ripped me off, physically he was a good caregiver. Of course he didn’t want to call any attention to himself so he was going to behave as a perfect gentleman and a good friend to hide the fact that he was a fucking thief.

The one particular question that I do recall was “How are arguments resolved in your home?” I sort of chuckled to let them know I was joking and I said “I always win”. I wanted to reassure them that no one was acting on me against my will. I told Carol later I was being so emphatic about how I was in charge it was more likely they were going to arrest me for abusing dad then do anything to him for abusing me 🙂

I remember thinking it was a shame that they had to ask such questions but it made me feel good for the people who needed to answer those much differently than I did. Who knows it might just save someone from a very difficult situation. At least I hope that it would. Again this was so far beyond my experience that I didn’t know what was like to feel unsafe at the hands of a caregiver.

The huge irony behind all of this was that I’ve been dependent on other people for absolutely everything for over 61 years, would never have answered those questions in a way that would indicate that I had ever felt vulnerable or at risk, and less than 24 hours later had they asked me the same questions I would’ve had to answer differently. In the very room in which those questions were asked, I found myself in a situation where I felt helpless and at the mercy of a caregiver who was ignoring my explicitly stated wishes for no medically necessary reason whatsoever. We will describe what happened in a future blog post titled “The First Incident”.

To be continued in the next post…

 

I was going to end this blog post right here but I can’t resist the temptation to fill out James Lipton’s questionnaire so here goes…

Q. What’s your favorite word?

A. Understand

 

Q. What’s your least favorite word?

A. Hypocrisy

 

Q. What turns you on?

A. There’s this spot on my… No we’re not going there… okay let’s see… “Explaining things”

 

Q. What turns you off?

A. Duplicitousness

 

Q. What sound or noise do you love?

A. The sound of 33 IndyCars or 43 NASCAR Cup Cars going by a fence 20 feet in front of you on an opening lap.

 

Q. What sound or noise do you hate?

A. After a serious accident at the Indianapolis Motor Speedway when you suspect that a driver has been killed in an accident, the PA announcer (either the late Tom Carnegie or the current chief announcer Dave Calabro) comes on and says “Ladies and gentlemen may I have your attention please?” Hundreds of thousands of people go immediately silent knowing what they are about to hear next. The track announcer never asks for their attention in that way unless it is the ultimate bad news. He then goes on to say that he is sorry to report that the driver in a recent incident has succumbed to his injuries. It’s that literally deathly silence after the initial announcement and before he actually delivers the news. That’s the sound or noise that I hate. I’ve been there twice at such times.

 

Q. What profession other than your own would you like to attempt?

A. Although it’s totally beyond my physical capability my fantasy job would be a keyboard player in a rock band similar to Keith Emerson.

 

Q. What profession would you not like to do?

A. At one point before I discovered computing, I thought perhaps I would go to law school but in retrospect I realize it would’ve been a terrible mistake. I could never have a passion for “The Law” that exceeded “doing what’s right” but that’s what lawyers have to do all the time. They have to uphold the law even when it doesn’t always lead to the truth or to justice. I could not do that.

 

Q. Lipton asks “If heaven exists what would you like to hear God say when you arrive at the pearly gates?”

A. First of all my fear is he would say “Chris we have this computer virus we’d like you to take a look at.” But what I hope he says is “Well done.” Either that or “Go back… You’ve still got work to do.”

Q. Note however the original version from Pivot which was feared offensive to American audiences was “”If God exists, what would you like Him to tell you when you’re dead?”

A. I would say “Thanks for everything.”

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

Note: To those of you who have heard this story before, please keep reading to the end. There is a new ending and I don’t want to give it away. Please keep reading.

Approximately 40 years ago I applied for a job as a computer programmer at the Indiana University Department of Medical Genetics which in those days was housed in the research wing of Riley Hospital for Children. My mentor and computer professor Dr. John Gersting was a consultant to the project and helped me secure the job despite his insistence that he would not help and I had to earn it on my own. He attended the job interview which was conducted by the department chairman Dr. Donald Merritt MD, PhD.

To put it mildly, Dr. Merritt was an asshole. Somewhere during the course of the interview Merritt and my mentor Gersting exchange some snarky joke with one another and Merritt flipped the bird at Gersting. Dr. Gersting looked at him as if to say “Why the fuck would you behave in such a childish manner in front of one of my pet students? Are you really so inarticulate that you have to stoop to flipping me off in front of him?” But in fact he said nothing. He didn’t need to.

At one point during the job interview Dr. Merritt asked me “What’s your diagnosis?”

I didn’t understand. I thought he wanted me to diagnose something. He rephrased the question “With what were you diagnosed? What you got? Why are you in the wheelchair?”

“Oh now I understand” I replied. “It’s some kind of muscular dystrophy or genetic neuromuscular disease. As you well know there are a dozen or so different varieties. I’ve never bothered to figure out which one I have. It’s not Duchenne muscular dystrophy obviously. There is genetic history in my family. The people here at Riley described it as ‘amytonia congenita’ but that’s not really a diagnosis it’s more description of my symptoms.” That particular Latin phrase means congenital (since birth) low muscle tone. I always said it was like they took me into the doctors and said “hey this kid has had weak muscles since birth” and the doctor said “We’ve got a name for that… amytonia congenita” and we said “What’s that mean?” and they said “it’s Latin for this kid has had weak muscles since birth”. It sounds so much more formal in Latin it doesn’t it?

“But don’t you want to know?” He inquired.

“Well Doc… When you can tell me which of those dozen or so types of muscular dystrophy you can do anything to help… Then I’ll worry about whether or not I’ve got that one.”

He raised his eyebrows as if to say “okay you got me there.” He went on to explain there were other reasons one might want to know one’s diagnosis. If I have siblings they might want to know if they were at risk to bear children with my disability etc. I told him we would deal with that at the proper time.

He went on to explain very matter of fact that his true purpose was to see if I was comfortable discussing my own disability. He had experienced people who were shy about discussing such issues and considering the way I threw it back in his face I had alleviated any concerns about my shyness or timidity on the topic. The interview went on and I got the job. I worked there for two years until my disability brought on congestive heart failure and other issues that made it no longer possible for me to work a full-time job.

Approximately 25 years later while doing some Google searches about medical conditions for a friend, I decided to look up “amytonia congenita”. Among the websites found were my own blog where I explained my connection to the phrase. Another was a quote from a book jacket on amazon.com for an autobiography titled “The Me in the Mirror” by Connie Panzarino. It said that the author had “Spinal Muscular Atrophy Type II, formerly known as amytonia congenita”. That peaked my interest. Whatever the hell “Spinal Muscular Atrophy Type II” was… It sounded much more like a real diagnosis than a symptom description like amytonia congenita.

I continued searching about Spinal Muscular Atrophy or SMA as it was abbreviated and as I read the descriptions of patients many in their own words, it sounded as though they could’ve been my twins. The course of their disease sounded identical to my own experiences.

One of the things that had made me reluctant to determine what type of muscular dystrophy I had was that the diagnosis process generally involves things like electrical stimulations of muscles and muscle biopsies neither of which sounded very unpleasant simply to answer a question that yielded no useful answers. However SMA was known to be caused by a missing chunk of DNA in my number 5 chromosome. Specifically it is missing from a gene known as the SMN1 gene. Genes are strands of DNA which create specific proteins. They are divided into coded sections called axions and non-coded sections called interons. The seventh axion of the SMN1 is missing in patients with SMA. It’s like you cut the tape and spliced it back together again. All they had to do was take a DNA sample in the form of a blood sample. They would send it off to a lab and sequence that gene and see if than chunk was missing.

Everyone has two copies of each chromosome with one coming from their mother and the other from their father. If you have a missing chunk from one parent but not the other you are a carrier but do not exhibit the disease. If both parents give you DNA with a missing chunk (a 1 out of 4 chance) then you hit the DNA lottery and end up with SMA like me. Whoops… Spoilers… The DNA test came back saying indeed I did have a missing 7 axion from both copies of my 5 chromosome.

Where did I go to get the test done? I went back to the Indiana University Department of Medical Genetics where I had worked as a computer programmer 25 years earlier. Dr. Merritt had died of skin cancer shortly after that job interview. After I left the department it moved to new buildings at the IU Medical Center. But some of the people who were there when I was were still working there and they had a vague recollections of the guy in the wheelchair who worked on the “Mega-dats” computer database all those years ago.

One thing that did not change over those 25 years. There still wasn’t anything they could do for it. But it was fascinating to know they really did know what was wrong with me. In the years since my diagnosis I have followed the course of the research. For example they have developed a strain of lab rats that have the disease which is useful. They’ve come up with a variety of strategies for possibly treating the disease.

I mentioned that the problem is a missing chunk from SMN1 gene which encodes something called the SMN protein the lack of which causes my disease. I can go into more detail on how it works but that’s unimportant for the current discussion. Everyone, whether they have SMA or not also has in their 5 chromosome something called the SMN2 gene sometimes called a backup gene that should kick in if there’s something wrong with SMN1. The problem is everyone’s SMN2 gene has a glitch of its own. Just one base pair in the strand of DNA (I forget whether it’s a AG or a CT that is swapped) is wrong. Think of it as a one bit data error in a strand of data thousands of bits long. That one bit error means that the SMN2 gene only creates the proper protein about 20% of the time. The other 80% create some worthless molecule that does nothing useful.

One of the strategies has been to get SMN2 to turn itself on five times more than usual. That way when it only works 20% of the time you get 5Ă—20% equals 100% of what’s needed. The other strategy is to introduce a drug that increases that percentage so that it works more often. It doesn’t correct the bad bit of data but it causes the protein to get properly manufactured despite the flipped bit. That strategy is one employeed by a drug known as “Spinraza”. But more on that later…

I said that I have SMA Type II. In my particular case I never walked as an infant and the disease has progressed relatively slowly throughout my 61+ years on the planet. A more severe and more common version is SMA Type I in which infants are born severely weakened and rarely survive more than a few months. It is the number one genetic killer of any disease known. There is also an SMA Type III which has a later onset than mine and therefore consequently less severe. The goal of course of most treatment strategies is to try to get those Type I babies to survive more than a few months. A successful treatment is easy to measure because they wouldn’t die. Measuring success in Type II or III is more difficult because the disease progresses more slowly.

Okay… I can’t stand it anymore.

I have buried the lead of the story as deep as I can.

Today, December 23, 2016, the FDA has approved the use of the drug Spinraza for the treatment of Spinal Muscular Atrophy Type I, II and III. In clinical trials with a double-blind study of 121 patients with SMA Type I, results showed that 40% of the patients receiving the drug showed measurable efficacy measured by a variety of standards including extended survival while those receiving a placebo had no benefit. The drug is so effective that all participants are now receiving the actual drug. It is been fast tracked and approved for all types of SMA including mine.

The treatment involves injection into the spinal fluid. I’m not sure how often such injections are required. If you can do it on their program they will cover the cost of the drug. This is also hot off the press there isn’t much information available right now.

Obviously for someone like me who has endured the effects of the disease for 61 years even if this was an all-out cure (and no one is calling it that… They are calling it a treatment) nothing is going to reverse the orthopedic effects of contracted joints, severe scoliosis, muscle deterioration, nerve damage etc. that can come with the course the disease throughout my life. I’ve always known that as I followed the research. To the parents of those Type I babies however it’s the miracle they’ve all been praying for.

But finally Dr. Merritt, wherever you are, they can do something about one of those types of muscular dystrophy. And guess what… It’s the one I got!

And I discovered the news by a Facebook post from CureSMA.org while sitting alone in room 207 of St. Vincent Seton Specialty Hospital two days before Christmas while waiting on bureaucracy to get me a ventilator so I can go home.

Here are two articles with details on the above story.

FDA Approves Spinraza for SMA

FDA approves first drug for spinal muscular atrophy

This Ambulance Sucks… Not!

Second in a series. Click here for an index of all of the articles in this series.

This health crisis began with an ordinary viral head cold. I first noticed it the evening of Thursday, December 1. It was a scratchy feeling in the back of my throat and the soft palate on the right side of my throat. Throughout the night and into the next day I could feel it migrate from one side of my throat to the other and then up into my sinuses. Usually I’m very aggressive in treating any kind of cold because my lungs are easily susceptible to pneumonia. For most people if it’s obviously a virus, doctors recommend you do not use antibiotics because over prescription can be dangerous. But my doctor has always made it clear we need to be aggressive in preventing pneumonia.

In this particular instance I really didn’t think it was necessary. I didn’t feel any congestion in my lungs at all. I had no sign of a fever. It just didn’t seem necessary to treat it at this point. I have some antibiotics that I keep on hand. I keep them handy in case of one of my recurring urinary infections pops up on a weekend when I can’t get to the doctor. I knew that I had that option as well as an immediate care facility in Speedway that I had used on weekends on a couple of other occasions. So I just wasn’t very worried about the whole thing.

Friday afternoon the drainage from my sinuses was getting a little bit excessive and I was also having some unrelated intestinal issues so I decided to go to bed in the middle of the afternoon to take care of my breathing and to be ready to use the bedpan at a moments notice. I wasn’t having any difficulty breathing. I did not put on my CPAP or oxygen until my usual bedtime around 11 PM. But for some reason I just couldn’t sleep Friday night. That happens occasionally and I don’t know why. Sometimes my brain gets to moving so fast I just can’t turn it off at night. I was wide awake until the early hours of the morning so I told my dad to cancel the home health aide who was scheduled to come in at 10 AM. I finally got to sleep around 6 AM and slept until nearly 1 PM Saturday afternoon.

Dad got me up and dressed and I started working on preparing the message for the inside of my Christmas cards. I had already had the outside of the cards printed at VistaPrint.com and I typically print custom inside messages on my laser printer. I also did some tinkering with my 3D printer making some little gifts I planned to give for Christmas.

The drainage from my sinuses started to make me feel a little congested in the throat. Because I use voice control on my computer I decided I needed to stop talking and relax a little bit. I went in the living room and turned on the TV and reclined my wheelchair slightly to help ease my breathing. That usually does the trick whenever I start to feel congested. The reclining wheelchair is new since April. Reclining has always helped in the past but this time it wasn’t working.

Dad was getting ready to cook himself some supper but I interrupted him and said I needed to lay down. Laying flat on my back always helps my breathing. That way I’m not fighting gravity to try to cough up any congestion. I could tell immediately however that this wasn’t helping as much as usual. I put on my CPAP as soon as he got me undressed. I rarely ever do that under such circumstances but I really felt I needed it. It was like my windpipe or bronchial tubes were having some sort of spasms and trying to close up. I was having difficulty getting my lungs to inflate and I was sure that the CPAP would do the trick

The breathing difficulty would come and go in spurts. Sometimes it felt like I was breathing fine. Other times it felt like everything was closing up and spasming. This was definitely an unusual experience. I finally called dad again interrupting his dinner and saying we needed to call 911. I simply could not get my lungs inflated properly.

Firefighter paramedics arrived first and the ambulance shortly thereafter. They picked me up by grabbing the contour sheet off my bed with me wrapped up in it and transferred me to the gurney. They put a mask over my nose and started blowing a high rate of oxygen into me very hard. Much harder than my CPAP pressure. It was still barely enough to keep me breathing well. My oxygenation level was good but I was panting and only breathing with a small portion of my upper lungs.

We headed off to St. Vincent at non-emergency speed which was okay. I was getting by okay and I had the ambulance EMT there if things got worse. Dad would follow in our van and meet me there.

Because of my usual swallowing difficulty I needed to spit the congestion and ordinary saliva from my mouth. I asked the EMT if he had a suction tube and he reached over to the wall and grabbed a Yankauer. He couldn’t get the suction to work. He reached to the other side of the ambulance for another device and it didn’t work either. He said the ambulance was brand-new and they had probably never used the suction devices. Somebody had failed to test them. He had a portable suctioning device that he quickly hooked up and was able to clear my mouth.

There is a ground-level entrance to St. Vincent ER where anyone can drive up and unload but ambulances go down a steep ramp to an underground ambulance bay that is great because it allows you to unload despite the weather. Once inside have to go up elevator to get to the ER.

St. Vincent ER is the only ER I’ve ever been in. They put you in a small enclosed room that looks nothing like the ER facilities you see on TV or movies. On TV it’s always a big open bay with nothing but a curtain between patients or the exam rooms have lots of windows that allow patients to see through to the next bay which allows for all sorts of dramatic TV interactions. I always wondered if other real ERs had that open layout like they do on TV or if that was just to make the stories more interesting or easier to tell. An ER TV show or movie shot in a room like St. Vincent’s ER certainly would not be as interesting. Then again this was not a trauma room so that might be different.

I don’t remember a lot of details of what we did in the ER that night. They put me on a BiPAP machine which is sort of like the CPAP that I use to help me sleep. CPAP provides constant positive air pressure hence the name. A BiPAP is a bilevel CPAP that supposedly senses when you are trying to breathe in and out. He gives you high-pressure on inhale and then lowers the pressure on exhale. For some reason that never works very well for me. I like to let the high-pressure fill my lungs and then squeeze out the air against that pressure so that my lungs deflate slowly. When wearing a BiPAP, the pressure drops quickly and I exhale too quickly. On this particular occasion I was having so much difficulty inhaling it seemed like the BiPAP was not sensing that I was attempting to inhale. That meant it wouldn’t kick in that high-pressure like I needed to do.

Dad had brought my CPAP and the mask that I use at some point, I don’t recall if it was in the ER or he was in the ICU later, but I got them to use my nasal pillow mask rather than the full face mask they had been using. That helped a little bit but not much. As I mentioned before my respiratory distress seemed to come and go in waves. Sometimes I could breathe almost normally. Other times I was in serious distress.

At one point they took a chest x-ray and said that I had no sign of pneumonia. That surprised me considering how much difficulty I was having breathing. But really it did not feel like congestion as much as it did spasms in my windpipe and bronchial tubes. When I would try to inhale I would make a loud rasping sound. It wasn’t until a couple of days later that we discovered I was having some sort of vocal cord dysfunction. My vocal cords were slamming shut and that was restricting my breathing.

I seem to recall being transferred to the ICU sometime around 11 or midnight. Dad had brought not only my CPAP and mask but my special nurse call button that I’ve been using for many years. I’m estimating it was perhaps 30 years ago I was at St. Vincent and could not operate their call button. The biomedical engineer built one for me after I told him the type of microswitch that I could operate. He just told us when you leave the hospital, take it with you and anytime you come back bring it again. We been doing that nearly 30 years now. More on that later.

Because my primary doctor is part of the St. Vincent network and because I been in St. Vincent Hospital on several occasions they already have my medical history and all the necessary information so there wasn’t the usual long patient history to be taken. Dad left and most of the doctors wandered out it was just me and my primary nurse in the room. It was at that point that she told me we went through the questionnaire. A series of questions I had never been asked before.

To be continued not in the next post but in this following one…

Pray That They Listen to the Man with No Voice

First is a series. Click here for an index of all of the articles in this series.

On Monday, December 12, 2016 at 3:36 PM I sent some text messages to my friend Judy Chapman asking for prayers in desperation. It was the culmination of 12 days of an emotional roller coaster surrounding one of the most serious health risks I’ve ever had in my 61+ years. It started with an ordinary scratchy throat from a viral head cold on December 1. By dinner time on December 3 we called 911 and I was on my way to St. Vincent Hospital in serious respiratory distress in the back of an ambulance. I made my way from the ER to the ICU where I was intubated at 3 AM that morning. Although I was extubated a couple of days later, I took another turn for the worse and they had to perform a tracheostomy. The inability to talk while intubated and after having had the tracheostomy pushed me to my emotional limits. I’m accustomed to being an active participant in my own healthcare decisions but the inability to talk led me on a bizarre sequence of events that would lead to the text message prayer request that I sent Judy that afternoon.

Because of my disability, I cannot operate an iPhone using the touchscreen. Earlier this year I designed, built, and programmed an electronic gadget that I described as “the ultimate remote control“. It is operated by three small push buttons that I hold in my right hand. The device sends Bluetooth signals to the phone and makes use of the iOS 9 accessibility feature called “switch control”. By pushing three little micro switches, I can operate any of the phone’s functions including sending text messages. Over the past several days this was my primary method of communicating with the doctors and nurses for anything other than simple yes and no questions. I would type messages in the “Notes” app on the iPhone and then the doctors would look at my phone and they would read what I had written. Unfortunately it was a slow and tedious process fraught with difficulty.

I began the text messages to Judy with a joke. I told her that if she had heard a loud whirring noise from the south side of Indianapolis it was my mother spinning in her grave over all of the things that I was enduring. But then it came time to get serious and ask for prayers.

Typing using this device is a bit slow so there’s time to think about each word. I begin with “Pray that…” Okay Chris, be specific, for what do you want her to pray? Healing? Even though I was lying in bed with a tracheostomy and in need of a ventilator to sleep, physically things were going reasonably well under the circumstances. What led me to this emotional meltdown that I was experiencing? What did I really want most in the world at that very moment? Patience? I didn’t want to be patient. I wanted results now. If not healing or patience what did I want? I typed the next two words “…they listen…”.

The message now read “Pray that they listen…” and I was about to type “… to me.” But a sad, sick giggle rose up inside me. “…listen to me?” I had no voice! How the hell do you listen to a man who has no voice? Yet that’s what I really wanted. I wanted a miracle. I wanted people to listen to the man with no voice. So I completed the sentence that way.

“Pray that they listen to the man with no voice.” And I sent it.

And then I read it over and over and over again. The sentence shocked me. It was full of pain and sorrow and desperation. It perfectly expressed the emotions that I was feeling and it revealed them back to me with a clarity that shook me. I’ve written powerful dramatic sentences in my time. I’ve won awards for my writing. This may have been the most powerful sentence I’ve ever written in my life.

I realized that if that was the title of a blog post or perhaps a magazine article or even a book that I would be drawn in immediately. I would want to read that story. What was the story behind those words? Why did the man feel he had no voice and what did he want them to hear that they were not hearing? How did he get to that point in his life that he made that prayer request?

That’s the story I’m going to tell in this series of blog posts. When it’s complete, perhaps I will attempt to get it published. My experiences leading up to that moment, the issues raised in my struggle, and the journey beyond that moment I believe will be a worthwhile tale to tell and I feel compelled to tell it to the widest possible audience.

So let’s go back to the beginning of the story and I will tell you how I got to that moment where I felt that despair and wrote those words.

To be continued in the next post…