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.


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.


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.

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.


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

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 12 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.

A Busy First Day

This is the second 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.

A Parade of Therapists

Thursday, December 15 was my first full day at Seton Specialty Hospital. I was visited by a long list of therapists. I’ve never had any physical or occupational therapy of any kind throughout my life. You may recall in my ICU story a very tense and scary visit from a group of physical therapists who attempted to evaluate me even though I couldn’t talk because I was on a ventilator. Fortunately that incident turned out okay because they respected my wishes not to be manipulated physically by them. This was unlike some of the nurses I encountered in the ICU.

Apparently therapy is big business in a long-term specialty hospital like this. The goal is to get people stronger, faster, better and that takes therapy. I was visited by a physical therapist, occupational therapist, a skin specialist who inspected me for bedsores, and a speech therapist who is there to evaluate my swallowing difficulties. We made plans with the physical therapist to try to get me up in my wheelchair as early as the next day. The skin nurses were as usual very impressed at the lack of any sort of skin sores or lesions. Throughout my entire two-week visit in this hospital I continued to have to argue to convince them that lying flat on my back and not turning on my side very much if at all was the best thing for the condition of my skin. Whenever they argued back at me I would invite them to look at my skin and ask them if my ideas about how to protect my skin were so bad, how come my skin looks so good. I had no trouble convincing the occupational therapists that I really didn’t need anything from them.

The speech therapist wasn’t there to work on my speech. Now that I was off the vent and had my voice back there was nothing wrong with that. But she was there to evaluate my swallowing difficulties. After my G-tube procedure in May 2016 I had continued to drink Coke and to take oral medication by mouth. But there was always a risk of aspirating something. She had me try swallowing ice chips and water and of course concluded my ability to swallow was awful. The conclusion was all of my medication would continue to be ground up, mixed with water, and put in to the G-tube. I don’t recall if it was at this point or another visit later on by the speech therapist that they discussed something called “Frazier Water Protocol”. It’s the idea that if you have difficulty swallowing and are at risk of aspirating fluid, that it’s not only okay to drink plain water but it’s a good idea. The theory is if you have good oral care and keep your mouth clean and you are drinking plain water, even if you would accidentally aspirate something it would just be plain water and would not be harmful. Or at least not as harmful as aspirating food or other kinds of liquid such as milk, soda etc.

Keeping a clean mouth is a big part of that. The nurses would swab my mouth with a sponge swab soaked in mouthwash a couple of times a day. Sometimes it was with a small brush that wasn’t really like a toothbrush but they did brush your teeth and mouth with it. The respiratory therapist would also do some sort of swabbing twice a day so I was actually getting mouth care four times a day.

Speaking of respiratory therapists, they would do a catheter suction of my trach as needed. They would give me albuterol breathing treatments every six hours around the clock (yes in the middle of the night). Additionally there is a piece of gauze with a slit in it that slides around my trach. That would get changed twice a day. The strap around my neck that holds in the trach would get changed every other day.

When I wasn’t on the ventilator (which was all day long) they would place a sort of cup-shaped clear plastic device over the opening of the trach that was held in place by a strap around my neck. It’s called the trach mask. It was connected by hose to a humidifier and about 6 litres per minute of oxygen. Normally when you breathe through your mouth or through your nose, the air is both heated and moisturized by your mouth or nasal passages. However when breathing through a trach, the air goes directly into your windpipe and into your lungs. So you need some way to get heat and humidity to keep your lungs from drying out. At times it was turned up to 10 liters which made it very noisy. If there was a low point in the hose, then condensation would collect and it would start making a terrible rattling noise. There was a bag in the circuit that you could tip the hose the right way and would dump the condensation into a collection bag. Most of the time just to cut down on the noise I would have people turn it down a little bit.

Among the other new people I met was a new case manager a woman named Michelle. It became apparent that any progress towards getting my ventilator at home were probably rolled back to the beginning. The transition between St. Vincent’s case manager and this new one did not go well. This entire process of getting the ventilator was predicted to take 2 weeks and I felt like we’ve wasted three or four days already.

Here is my only Facebook post for the 15th.

Sparse Amenities

The rooms in Seton Specialty Hospital are much smaller than those in the regular St. Vincent Hospital. Most of St. Vincent’s rooms were originally 2 bed rooms that had been converted into a single bed room. So they were quite spacious. The ICU rooms also have a good amount of space because often you have lots of IVs, ventilators etc. and they need room to work on you in critical situations. So this room felt quite cramped compared to what I had been used to.

The cable TV system had a good mix of basic cable channels such as ESPN, news channels, sci-fi etc. of course along with the local channels. It was an analog cable system unlike the digital IP-based system used in St. Vincent. Fortunately that meant there were no spurious pop-up messages interrupting my viewing. Of course it always takes a couple of days to figure out where your favorite channels are. The remote is only channel up and channel down so you can’t just jump to a particular channel. You have to scroll through all of them and invariably you always end up searching the wrong direction and having to go all the way around and back again to get what you want to see.

The shape of the room was really strange. There was sort of a little alcove off in one corner that had a window so you can see outdoors. But the alcove was so small you could hardly get a wheelchair in there. There was sort of a shelf table built into the wall and we kept my laptop and iPhone sitting there when I wasn’t using it. There was an electrical outlet nearby so I can keep everything charged up. There were two chairs in the room for visitors. One was a reclining chair for a patient to sit in when they were up and about and the other was just a regular chair. Somewhere along the way we lost the recliner. If I had multiple visitors we had to scrounge up an extra chair for them to sit in.


While in the ICU I had used mostly my iPhone for Internet access to things like Facebook and email as well as text messages occasionally. But now that I could talk again, we set up my laptop computer on the bed tray. I used my usual voice control software supplemented by my IR remote that helps with mouse control. It also gets me out of trouble whenever the voice control locks up which unfortunately is frequently. One of the problems with the IR remote is that I can’t use it and hold the nurse call button at the same time. That generally meant that I only used the laptop while dad was visiting and he could call the nurse for me if need be. The Wi-Fi here was apparently the same system used by regular St. Vincent because the special login screen was identical. I never had any trouble connecting to it and was able to watch streaming video just fine as well as to do some live streaming from my iPhone using the Wi-Fi.

One of the big challenges for me as the person addicted to TV is that while you’re in the hospital you risk having your DVR overflow. Bright House has a webpage that you are supposed to be able to login to access your DVR. You can’t watch what’s recorded but you can see what programs you have, what is scheduled, and you can access the program guide to schedule new programs. Unfortunately for some reason I couldn’t get it to work. I later discovered that there’s some sort of glitch that it doesn’t work when your DVR is above 90% full. I found an alternate way to access the DVR which I will describe in a minute. But once I got it cleaned out using this alternate method, suddenly the webpage access started working again.

We have 2 DVR’s in our house. One in the living room that records programs that dad watches alone or that he and I watch together. The other one is in my bedroom and it records stuff that I watch by myself. In my office which is about halfway between the living room and my bedroom, I have a TV that can connect to either DVR. We don’t really have traditional “whole house DVR”. I just sort of rigged things that way. There is a 15 foot HDMI cable that runs from the living room cable box into my office into an HDMI port. There’s also a coaxial cable that runs a longer distance from the office TV into my bedroom and connects to the bedroom DVR. By changing the input on that office TV I can switch between the two.

I also have web controlled TV remotes built on Arduino Yun IOT boards in the living room, office and my bedroom. I can call up a webpage from any device connected to my home Wi-Fi and have complete control of the TVs, cable boxes etc. You can’t access these web-based remote controls from outside my home Wi-Fi but I have a workaround for that. I used a remote access program called Team Viewer that lets me login to my home desktop in the office from anywhere else such as my laptop in the hospital. I then call up the TV remote webpages on my office computer remotely via Team Viewer and I can control both DVR’s and all three TVs.

So I had my dad take the WebCam off the top of my computer monitor and prop it up pointed at the office TV. I then logged in to the office computer using Team Viewer and looked at the office TV using the WebCam. I then used the browser-based TV remotes to switch back and forth between the living room DVR and bedroom DVR. I used the web-based remote in the living room and the bedroom to browse through the programs, erase a few of them to make room, and reschedule re-recording those programs later in the week. This is a process I do on a daily basis when I’m home. If I have a movie recorded and I’m running out of space, I do a search for when the movie is going to be on again later. I then schedule a re-recording and delete the copy I already have recorded. So this WebCam based, Team Viewer controlled access allowed me to do just that and it kept both of my DVR’s in reasonable shape. I did end up deleting a couple of programs that were not that important to me and that I could not re-record. Also there was a miscommunication with dad about managing the living room DVR and he deleted a couple of programs I would’ve liked to have kept. I tried using this method to watch a TV show that I had recorded but the quality of watching it over the WebCam and poor sound coming to the WebCam microphone made it not really worth the effort. As I will explain later, I used this remote login and WebCam access for other purposes as well.

Updated Users Manual

That first day I also took the opportunity to type up my handwritten “Users Manual Chris Young” that I had written while in the ICU. It was instructions on things like “Don’t touch my kneecaps because they dislocate easily”, “How I signal yes or no”, “How to use the message board for me to spell messages”, and “How to put the call button in my hand”. Additionally I made new versions of the keyboard chart that I have people point to so that I can spell out messages when I can’t use my iPhone and cannot talk while I’m on the ventilator at night. Eventually I made 2 charts: one of them I called the “Letter Board” and the other one I called the “Word Board”. The letter board was simply a traditional QWERTY keyboard layout with instructions on how to point at the rows and columns for me to type out messages. The word board had words and phrases that I would use frequently. It turns out that 95% of what I needed people to do while I was on the ventilator could be handled by the word board and the letter board which had been my only means of communication was now sort of a backup for special cases. Here are what the two communication boards look like. Note: you can click on the images for larger versions.

When I came up with my first draft of my instruction manual, I uploaded it along with the communications charts to my desktop at home using the file transfer features of Team Viewer. Dad would bring me the printed pages the next day. The document went through several revisions both the communication charts and the instruction manual. At one point I had a critical update I needed to make to one of the charts that I wanted to get right away. I don’t remember what it was I wanted to add but I didn’t want to wait for dad to bring it the next day. I knew that my friends Rich and Kathy Logan were coming to visit me and I asked Rich if he could print a copy and bring it with him. So I emailed it to him and he brought it when he visited.

I don’t really have early drafts of the documents but I’m going to include here the final version because that’s all I saved. There were a variety of updates over the first week or so of my stay at Seton Hospital. Here is the final draft of my users manual.

How to communicate with me.

Eyebrows up and down = YES   Mouth twitch left and right = NO
Winking one eye = “I’m okay”
Clicking sound with my tongue= Need to use message board.
If I shut my eyes tight it means I can’t see the message board the way you are holding it. It needs to be directly in front of me and a fairly high up. There are two kinds. One of them has words and the other letters. Hold up the word board and ask if I want it or the other one. See instructions on the boards.

What to do when I press my nurse call button…

  1. Ask me “did you call?” Unfortunately a couple of times I’ve accidentally hit the button in my sleep.
  2. Ask me “Do you need your mouth suctioned” This is the most likely thing I need
  3. Ask me “Do you need your trach suctioned” I’m talking about the built-in sucker of the vent tube
  4. If I you can’t read lips or figure out what I want then go to the message boards as explained above.

How to position me: DO NOT TOUCH MY KNEES.

My kneecaps dislocate easily. You can grab my legs above the knee, below the knee, behind knees but not on the knee caps. Leave knees apart while lying flat. Position knees side-by-side when rolling me. Grab hips and shoulders to roll. Be careful knees don’t hit the railing while rolling me.

My Special Call Button

I hold a special called button in my right hand. It is difficult to put in position so avoid moving my right hand unless necessary. Place rolled piece of foam under my wrist halfway between wrist and forearm. Insert index finger into green ring. The blue block on the side of the switch goes towards my palm. My thumb rests on top of the metal tab.

Keep covers away from my right hand so it doesn’t interfere with the button. Before leaving, ask me to test the button. I will push it if I can. If successful, reset the light and you can leave.

About the room

I like to be able to look out the door. Please leave the curtain open unless I’m getting naked. Do not shut the door unless you are in with me.

About the bed

I know patients are supposed to sit up however with my scoliosis I am much more comfortable lying flat. Sitting upright compresses my lungs and makes it MORE DIFFICULT to breathe. I do not roll on my side very much because I cannot operate the nurse call button reliably while on my side. (although new adaptation to call switch may help that.) I use the Yanker to clear saliva from mouth when you are in the room but I use the spit cup when no one is around so I don’t have to bother you constantly to suction my mouth.

In addition to typing up my instruction manual and working on my communication charts I also worked on a document I called “calendar.doc”. It is just a sentence or two about what went on each day. That would later help me to prepare these blog posts. Because I’d only been in the ICU about a week and I did have some iCloud notes and Facebook posts to refresh my memory, I was able to re-create what it happened that first week. But going forward this little cheat sheet of what I did each day was going to be quite valuable for putting together the blogs. And speaking of blogs… I began the first draft of the first installment of my blog series “Pray That They Listen to the Man with No Voice“.

It had been a very busy first full day.

My New Hospital Home

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


In a previous 14 part blog series titled “Pray That They Listen to the Man with No Voice” I recounted my weeklong hospitalization in St. Vincent’s ICU with severe respiratory problems. The end result was I had to have a trach installed. After about a week, I was no longer sick enough to be in the ICU however I still needed to use a ventilator to sleep at night and St. Vincent’s rules are such that you cannot have a ventilator in a regular hospital room. So instead I had to be transferred to what is called a “long-term acute care hospital”. The facility of choice was St. Vincent Seton Specialty Hospital which is just a few blocks away from the regular St. Vincent Hospital.

That previous blog series, the events from December 1, 2016 through December 14 but I did not finish writing it until late March. I promise to pick up the story of my recovery at Seton Hospital “very soon”. But now it is mid-July and I’m just now getting around to it. This part of the story isn’t nearly as dramatic or traumatic as was the previous story. Still I feel a need to share it because some interesting things did happen along the way and I promised I would finish the story so I will. This series will pick up on December 14, 2016 and run through December 28 when I finally got home. As you can see I ended up spending Christmas in the hospital so let’s title this series “Holiday Hospital”.

Throughout this blog if you see this little Facebook logo it is a link to a Facebook post of mine that I posted at the time of the events I’m describing.

About Seton

Before we talk about everything I did and what happened at this new hospital I thought I would give you some background about it and the Saint that is its namesake.

St. Elizabeth Ann Seton was the first nativeborn American to be canonized as a Saint by the Roman Catholic Church. She founded a Catholic girl school in Emmitsburg Maryland and founded the first religious order of sisters in America called the Sisters of Charity. That religious order is connected to St. Vincent Hospital and so this auxiliary hospital which is part of the St. Vincent system bears her name. While most Sisters belonging to religious communities or founding religious communities are single women, Seton was married, had children and then widowed before she became Catholic and then eventually founded her religious order. Seton is her married name. You can read all about her on Wikipedia here. https://en.wikipedia.org/wiki/Elizabeth_Ann_Seton

As mentioned earlier this hospital is known as a “long-term acute care hospital” and according to the website specializes in the treatment of medically complex patients who require extended hospital stays often of 25 days or longer. I would end up staying there 2 weeks but many of the people had been there much longer. Is located at 8050 Township Line Rd. it’s a relatively small hospital just two stories and they told me at has about 75 beds. Here is their website https://www.stvincent.org/locations/hospitals/seton

I’m not sure exactly what all services they have there. I did pass by an x-ray room. They have a really big physical therapy department because lots of the patients are trying to regain strength either to go home or perhaps to a rehab hospital. Here is a YouTube video that is a tour of the facility.

Many years ago (2004?) after my mother had spent 19 days in a drug-induced coma while she was fighting sepsis after pancreas surgery, she transferred to Seton Hospital. However it was not located in a separate building at that time. It was just one floor of one wing at the regular St. Vincent Hospital. But they insisted it was bureaucratically actually a separate institution. I don’t know when they moved it from that section of regular St. Vincent into this particular building.

The regular St. Vincent Hospital is a teaching hospital so your first line of contact with the doctors is generally by a resident who is under the supervision of an attending or a group of attendings. Of course you also have lots of specialist doctors such as pulmonary, urology, G.I. and of course surgeons roaming around. At Seton as best I can tell there is one main doctor pretty much covering the entire facility. They bring in specialists as needed from the regular St. Vincent Hospital but on a regular basis I think there is only one guy on call. As a replacement for residents the instead have some nurse practitioners who are the front line medical people. All of the nurse practitioners I had while I was there were women. As explained in the video the nurse to patient ratio is about 1:4. In addition to the nurses they have patient care technicians who do things like take vital signs, bedpan duty, bathing duty etc. just like a regular hospital.

Also as explained in the video, there are no nurses stations per se. There is an area the end of the hall in the advanced care section where they monitor some monitors and there are desks and phones where I would often see the case management people working. But for the most part the nurses hang out in the hallways at desks built into niches in the walls and sit at computers. I’m not really sure what is on the computers however because a lot of the patient records are in three-ring notebooks. This is in contrast to regular St. Vincent which appears to be about 99% paperless in its record keeping. At St. Vincent there is a Dell PC in every single room and all of the activities are recorded directly into the computerized system. Apparently Seton is still a little bit old school (behind the times) by having traditional paper patient charts.

There is also a very active staff of respiratory therapy people roaming the halls all the time. At regular St. Vincent you would see respiratory therapists come and go as needed and they apparently had some sort of homebase somewhere in the hospital from which they worked but at Seton they seem to be hanging out in the hallways constantly. Just about everyone in the place had some sort of respiratory therapy needs even if it was just oxygen.

Like the regular hospital, the nurses basically work 12 hours shifts with the shift change occurring at 7 PM and 7 AM with a brief overlap to brief the next shift on what was going on. One brilliant bit of scheduling however is that the respiratory therapists have their shift change at 6 PM and 6 AM so you don’t have the entire staff turning over at once. That seemed like a really good idea that worked well for me on a number of occasions.

Another bit of interesting scheduling is that half of the patients would receive their bed baths in the morning back the dayshift and the other half would get bathed in the evening by the night shift. The entire time I was there I would get my bath in the evening. In most hospitals I would guess that only a fraction of the patients needed assistance with bathing but here everybody was in pretty bad shape and virtually everyone needed a bed bath every day. So I thought it was clever to split the duties between the two shifts.

Settling In

My biggest apprehension about moving to Seton Hospital was my concerns about my call button. If you read any of the other stories about my hospital stays you know that I have a little microswitch on the end of a long cord that is a specialty call button that I use in St. Vincent Hospital. It has a quarter-inch mono jack on the end sort of like the plug you would use on electric guitar. At St. Vincent it plugs into the wall and sets off an alarm that calls the nurse. Originally it just called the nurse but I think nowadays it’s actually wired into the bed alarm which detects when a non-ambulatory patient tries to get out of bed without assistance.

My St. Vincent Call Button

I’m guessing I first got the device perhaps 25 or 30 years ago when I was in St. Vincent for some reason or another. It was probably a diverticulitis attack although it might’ve been pneumonia I don’t recall. I was unable to use the regular nurse call button. The various specialty buttons they had available such as a squeeze ball or an elbow pad just wouldn’t work for me. Dad and I tried to wire in a microswitch but we couldn’t get it to work. I’ve used microswitches for a variety of purposes over the years. When we couldn’t get this to work, they sent someone down from the rehab engineering department and he put together this switch. He told us to take it home with us when we left and bring it back anytime we returned and so for three decades that’s what we’ve done. At one point they changed their system from a normally open switch to a normally closed switch so they had to rewire it for us. Dad replaced the cord at one point because the old one was too stiff. But otherwise it’s been that same system they built for us years ago. I’ve never been in any other hospital besides St. Vincent on 86th Street and I wasn’t really sure if that quarter-inch mono plug was some kind of standard or if it was something unique to that hospital.

When we got to Seton the plug in the wall for the nurse call was some sort of bizarre multi-pin connector that I had never seen before. However they brought in a box full of specialty call buttons like those I had tried and rejected at St. Vincent decades ago. They all had the quarter-inch mono plug and they also had an adapter that converted the multi-pin jack into the quarter-inch socket that we needed. For some reason it would not work when we plugged it into the wall but there was another place to plug in on the bed itself and that worked perfectly. I can’t begin to imagine how I would’ve gotten by had we not gotten this call button to work.

When I was at the ICU I had dad bring in my laptop computer for one day to see if I could use my IR remote and the on-screen keyboard on Windows 10 to type messages. I knew that it had a “switch control” feature where you could scan the keyboard and use a single pushbutton to select letters but I had never really tried to use it before. It turns out that compared to the switch control features of Apple iOS on my iPhone, Windows switch control is a piece of crap. Because I was on the ventilator almost the entire time that I was there, I couldn’t use the voice control so I was really better off forgoing the laptop and just using my iPhone. But now that I was going to be settling into a new place and could talk the entire time except for at night, I definitely wanted to get the laptop set up. Not only would it give me easier access to email, Facebook etc. I could also use Team Viewer to log into my PC at home and do lots of other things remotely which we will describe later on. So it was not only did I have my voice back, it was good to have my voice controlled computer back as well because that’s my normal way of operating a computer these days. This was the first Facebook post I made on the laptop after moving into Seton.

More G-tube Controversy

A day or so before I left the ICU we had an incident where my G-tube fell out. They asked me why it came out and my response was “I’m surprised it stayed in this long the way you people have been yanking on it and tripping over the tube”. You can read that story here. The end result however was that I got a new G-tube placed the morning that I left for Seton. When the nurses looked at it they were a bit confused because it looked like it wasn’t an ordinary G-tube.

There are actually three different kinds of tubes they can put in. A G-tube extends a short distance through your abdomen into your stomach and is used primarily for people like me who can’t swallow. However if you have digestive difficulties there is another kind of tube called a J-tube that extends several inches down into your small intestine. I had heard about J-tubes but was not aware that there was also a third kind that was a combination of the two. The tube actually has 2 tubes embedded in it. One empties into your stomach like a G-tube and the other goes down into your intestine like a J-tube. It has 2 ports depending on which tube you want to use. One of them you use for nutrition and the other for medication although at the moment I can’t recall which is which. I don’t understand the medical reasons why you would have a combo tube.

Anyway… One of the nurses looked at my new tube and concluded that it was a combo because it had 2 ports. My previous G-tube also had two ports. One was for doing a bolus feeding with a syringe which I normally do and the other was for connecting to a pump for continuous feeding like they did when I was in the ICU. This new version that had just been installed that morning had 2 ports and one was labeled “nutrition” and the other “medication”. We thought I was going to have to have it replaced yet again because it was the wrong kind. As it turned out this was actually a single normal G-tube with two ports just like my old one but it confused them because it was labeled that way. So I sort of dodged a bullet there by not needing to have the tube replaced again.

Because I didn’t arrive until the middle of the afternoon it really took me the rest of the day to get settled in. My notes don’t say what kind of night I had the first night so it must’ve been uneventful. My second day was much busier so we will leave that until the next installment we in which I saw more therapists that I had ever seen in my entire life.

Hard Questions about Treating SMA

As I reported in this blog last December, the FDA has approved a new treatment for Spinal Muscular Atrophy or SMA. This is the genetic neuromuscular disease which I have. My particular variety would be considered Type 2. I never walked as an infant but the disease has progressed quite slowly and as I’m approaching my 63rd birthday I’m still alive. The most severe Type 1 makes infants so weak that their life expectancy without extreme measures is a year or two. Some children are living as much as three or four years using trachs, ventilators, and other extensive medical support systems.

The new drug which was approved was only tested on the most severe Type 1 individuals but has been approved for Type 2 and Type 3 as well. The drug is administered by a spinal injection and is extremely expensive costing up to $500,000 the first year and perhaps $300,000 each year thereafter. The disease is caused by a failure to create a necessary protein called the SMN protein. The lack of this protein causes a deterioration in motor neuron cells called anterior horn cells. One of the big questions I’ve had about the new drug is that if these motor neuron cells have completely deteriorated, it would seem to me the most is that any drug therapy could possibly accomplish is to maintain current health levels and not actually reverse the disease. Yet the initial clinical trials of these Type 1 patients have showed not just stabilization but actual improvement.

The big question is what about older patients. I’m not just talking someone in their 60s like myself but let’s suppose you are in your 20s. If you been living with the disease not long, one would expect that these motor neurons would be completely gone. This treatment is not going to regenerate those neurons. Could you really expect any actual improvement or are we just talking stabilization. Also given that the drug is administered by spinal injection and adult patients either have severe scoliosis like I do or they’ve had spinal fusion surgery (which I probably should have had years ago). Either of which make administering the drug more difficult.

It’s one thing to administer an extremely expensive drug to a Type 1 patient for which the disease is most certainly fatal and it’s something else to administer it to a Type 2 patient who could easily expect to live as long as I have or longer. Type 3 while it does leave them severely disabled could expect a normal life expectancy. Is it really worth it if there’s going to be no positive improvement or better outcomes?

In the video below a group of doctors discuss this new treatment as well as possible gene therapy treatments which are currently in phase 1 trials. They asked some of these tough questions about the advisability of using these treatments in adults for which improved outcomes are both unproven and in their opinion (and mine) unlikely.

They also asked a very disturbing yet appropriate question… If a Type 1 patient is not going to have a reasonable quality of life, should we use expensive and heroic measures to sustain that life or is it better to allow nature to take its course? These are very tough questions. I know people with Type 1 children and if I was in their shoes I could well appreciate their desire to do anything to keep their child alive. Still at some point, quality of life issues have to figure into the equation.

The bottom line is we still don’t know enough about how effective the new drug therapy is and we are a long way from knowing about the effectiveness and consequences of gene therapy treatments that are still in very early stage one trials.

Here is the video

The Transition

Fourteenth and the last in a series. Click here for an index of all of the articles in this series.

No More Cloud

In our previous installment I had an emotional meltdown over by inability to talk with the trach. I was facing a wide variety of issues that need to be resolved. Not being able to talk and to participate in the decisions was a real mess for me. When I finally got the talking valve late in the afternoon of December 12, I still had lots of issues to deal with but at least I could now actively participate in those decisions. It’s hard to say that there was any advantage to not being able to talk but the fact that we had to type everything on my iPhone into the Notes app did give me an archived record of everything that I had typed. All of the messages were saved in my iCloud account. Even though I deleted them, they remained in the “recently deleted” folder for 30 days. When I had realized what a resource those messages were for piecing together this blog, I restored all those recently deleted items into a folder called “formerly deleted” and I’ve used those messages to help piece together the story. Put that together with my Facebook posts and I had a pretty accurate blow-by-blow picture of what I had been through. Now that I was talking, there was no more permanent record in the cloud. It’s taken me so long to get to this point of writing the blog that it’s more than three months later so my memory is a little bit fuzzy on details.

Outstanding Issues

Even though I didn’t have the benefit of an iCloud archive, I did seem to have a lot of clouds hanging over me with all the issues that needed to be resolved. Once the valve was in and I could speak I could begin dealing with issues one by one. I suppose the biggest issue was if I was going to need a ventilator to replace my CPAP so that I could sleep. I had proven many times in recent years that I simply could not sleep without a CPAP. For example if there was a thunderstorm and our power was out overnight, I had a backup oxygen tank to replace my oxygen concentrator but I had no way to operate the CPAP without power. Despite my best efforts to sleep under those circumstances I could not do it at all.

On the morning of the 13th I got off of the ventilator and put in the talking valve. Sometime during that day I tried to take a nap without any mechanical assistance. Much to my surprise I was able to doze off for about a half-hour or 45 minutes without the ventilator or a CPAP. That was very surprising. However the experience did tell me that I wasn’t sleeping well enough to really sleep through the night. I explained that to the doctors and they all agreed that yes I did need a ventilator at night to replace the CPAP. They begin to understand that I have been using the CPAP not only to open my upper airway but to assist with keeping my lungs inflated. So then we had to go about the process of getting the ventilator for my home.

There was a woman who was my case manager. It was her job to get whatever I needed to get me home. As I mentioned previously however, the process of getting an in-home ventilator was theoretically going to take a full two weeks. At first I thought the delay was because it took that long to get some sort of Medicare or Medicaid approval. Actually that part was relatively easy. It was just logistics of finding the right durable medical equipment provider and jumping through a bunch of hoops necessary to get the equipment. Among the things they wanted to do was to inspect my house electrical system to see if it was sufficient to handle the equipment. It turns out this was a totally ridiculous requirement. The ventilator doesn’t require any special electrical capability. It probably uses no more current than an ordinary CPAP machine. The problem is that once you say the word “ventilator” it raises the image of someone who is dependent on the thing to stay alive. The image is of a person who will die within minutes if the ventilator fails. It turns out that this ventilator has a battery backup that is good for several hours so even if I was in a life critical situation, electrical failure wouldn’t be fatal. In my case I’m NOT in a life critical situation. In fact I’m less dependent upon the ventilator than I was on the CPAP. However none of that mattered. We still had to jump through all the hoops.

The case manager was initially talking about using a company called Apria Homecare which is one of the biggest equipment providers in the area. Years ago I had got my oxygen equipment from them but they were a little bit difficult to deal with and we ended up changing to a different company. I was willing to go with them despite my previous bad experience so I didn’t say anything against them. Then the case manager came back and said she was going to try a different company that was an independent small company run by a respiratory therapist. I forget the name of the company. I like that idea because I had recently changed to a different home health aide agency that was a relatively small organization. I had felt like I was getting more hands-on attention from a small group that I had with the larger company in the past. So the idea of a small operation for the ventilator provider was attractive to me. Unfortunately somewhere along the way she came back to tell me that we cannot use either of them because different durable medical equipment companies have contracts with Medicaid to cover certain geographic areas. It turns out that I had to use Home Health Depot because they had the Medicaid contract. But we didn’t find that out for a couple of days. That delayed the entire process even further.

The next issue to deal with was that I wasn’t sick enough to be in the ICU and I could not be transferred to a regular room because they don’t allow ventilators on regular medical floors of the hospital. So the alternative was to transfer me to a long-term critical care hospital also known as St. Vincent Seton Specialty Hospital named after St. Elizabeth Ann Seton. She was the founder of the Daughters of Charity of St. Vincent de Paul. They have founded a number of institutions including the St. Vincent Healthcare System. Seton Specialty Hospital was just a couple blocks away on Township Line Road. So we began making arrangements to have been transferred there. It would probably happen on Wednesday the 14th. I asked the doctors directly “If I had all the medical equipment that I needed at home, when do you think I would be medically ready to go home?” The doctor said perhaps two or three days. So that meant I was going to spend 9 or 10 days in this other hospital unnecessarily just because we could not get the logistics of getting me a ventilator at home.

And people wonder why healthcare is so expensive.

The final issue I needed to wrestle with was that I now had a urinary Foley catheter stuck in my stomach instead of a proper G-tube. I made it clear to anyone who would listen that I wanted this issue resolved. I came into the hospital with a proper G-tube that had the proper kind of valve on the end of it. I intended to leave there with the same kind of G-tube. I wanted someone experienced in replacing the tubes. If we had to go down to the radiology department to use x-ray assistance then that was okay with me. In fact I would prefer it. That’s how they’d put the tube in to begin with. We had tried 2 different sets of incompetent surgical residents who couldn’t seem to get a tube in properly. They finally agreed that on the morning of Wednesday the 14th they would take me to the radiology department and replace the Foley with a real G-tube.

Other Loose Ends

In addition to dealing with the case manager, I spent a fair amount of time with the young resident Dr. Heaven. She had really appreciated my emotional state when I was demanding the valve and was instrumental in getting everybody to agree to it. One of the questions I had for her was where was the medical student Brady who had sort of been my other go to guy when trying to resolve problems. She explained that he had taken a few days off to study for his residency exams and then would be taking exams. I was disappointed that I wasn’t going to get to see him again before I left for the other hospital. Fortunately I did reconnect with him later. After I got home, I got an email from him saying that he had found my blog. We swapped a couple of emails and became Facebook friends. He has been following this blog with great interest. By the way he passed his residency exams and was accepted into a residency program in a military hospital in California. He was really looking forward to it. He had been in the military previously.

Sometime on the 13th or the 14th before I left St. Vincent, I had my second conversation with the nursing supervisor about the way I had been treated and my wishes being disrespected while I was unable to speak. I had already recounted that story in previous installments but this is when that second conversation actually occurred.

The Most Interesting Doctor in the World

On the morning of the 14th they took me down to the radiology department to finally replace the Foley with a proper G-tube. They rolled me down to a waiting area that I was familiar with. This was my third trip to that particular department. The first was one time in 2006 when I was in for my intestinal problems. They had inserted a central line in my carotid artery. The other time was last May when I had the G-tube the first time. After a brief wait the doctor arrived. The instant I saw him I thought to myself “I bet the ladies around here are going absolutely nuts over this guy.” He looks like the kind of doctor that you would see on a medical TV show and could’ve easily replaced Patrick Dempsey on Grey’s Anatomy and be given the title “Dr. McDreamy”. He was Hispanic at about 5’10”. He had black hair and a short neatly trimmed black beard and mustache. It was so precisely shaped it almost looked like it had been cut out of black felt or velvet and been glued onto his face. He had on scrubs for pants but he was wearing a tight fitting “UA” brand athletic shirt made of some slick material with lots of tiny holes poked in it. His upper arms were massive it looked like he worked out in the gym eight hours a day or something. In some ways I thought of him like a 35-year-old version of the Dos Equis “World’s Most Interesting Man”.

I will fast-forward till after the procedure when I asked a couple of the nurses if he was really popular and if the nurses had a crush on him. They told me that they probably would have except that he already had a very hot looking wife and a couple of gorgeous young children. That didn’t surprise me at all. I jokingly described him to one of the nurses as “He’s hot enough to turn a straight man gay”. One of the nurses came back with “Or to turn a lesbian woman straight.” We all got a big laugh out of all that. Disclaimer: I don’t really think you can turn someone gay or straight. It’s not a choice. People are wired gay or straight. We were just making a joke about what a hunk this guy was.

Anyway he questioned me why I wanted the tube changed. I explained “Look there are two different kinds of tubes. There are Foley catheters for your bladder and there are G-tubes for your abdomen. They wouldn’t have invented two different kinds of tubes if they didn’t really have a difference to them. I’ve been using a G-tube with a valve on the end of it ever since May and it works out really well for me. The Foley just has a cap with no valve. The stupid surgical residents couldn’t get a regular G-tube put back in. I don’t know what they were doing wrong but it hurt like hell. You need to numb me up so it doesn’t hurt, use the x-ray as a guide, and put in the right kind of tube.” He said okay as if he appreciated the guy who knew what he wanted and wasn’t going to take no for an answer. They wheeled me into the procedure room which was also a very familiar place from my two previous experiences. A couple of shots of lidocaine took care of any pain and the tube was replaced in no time.

I thought that that was the end of it until someone got to looking at the tube and there was speculation that they had put the wrong kind in. A traditional G-tube goes a short distance into your stomach and is used for people like me who have swallowing difficulties. However if part of your problem is digestive, there is a different kind of tube called a J-tube that extends down into your intestine. There is also a combination G-tube and J-tube that is a two-in-one device. Because the valve on the end of this new tube had 2 ports on it, some of the people who looked at it thought that it was perhaps one of these combo tubes. We didn’t do anything about it at St. Vincent but the issue got raised later in the day when I was transferred to Seton. They thought perhaps the people at Seton were going to have to replace it again. As it turned out it was not a combo tube. It was just a regular G-tube with 2 ports. It did not need replacing again and the tube has worked flawlessly ever since then.

The rest of the afternoon was sort of a “hurry up and wait” situation. I was going to travel by ambulance from St. Vincent ICU to St. Vincent Seton Specially Hospital but we didn’t know exactly what time it would be. I was one of 2 patients who were going to make the same trip. Of course it always takes a lot of paperwork to discharge someone. Transferring them to a different hospital is no exception. And to have 2 patients from the same department making the same trip also kept the nurses very busy. Eventually it was my turn. They loaded me onto a gurney and wrapped me up in a bunch of blankets. The ambulance trip took only five minutes or so. Getting in and out took longer than that. My notes tell me that I posted on Facebook at 5:19 PM that I was settled in to room 207 of St. Vincent Seton Specially Hospital.

Final Thoughts

That essentially wraps up the story of “The Man with No Voice”. It was most definitely the most emotional and stressful hospital experience I’ve ever had. The repercussions of it will carry well into the rest of my life. However I think the story of my adventure at Seton is sufficiently different that it is a story unto itself. It’s not nearly as dramatic and there will not be as much detail to talk about. I will get to work on writing it very soon. The brief story is that I spent from the afternoon of December 14th until December 28 at Seton. It did take exactly 2 weeks to get the ventilator ready for me to go home. If not for the logistical nightmare, I could have been back home within a few days.

I still am amazed at how differently I was treated when I couldn’t talk. I’m still a bit haunted by the fact that there are many, many people who face these challenges every single day of their life. I struggled with it for a little more than a week and it nearly drove me nuts. I spoke of the surprising level of commitment and support from my friends in the maker community especially those at Adafruit Industries. One of the consequences of this experience was that I was recommitting myself to developing adaptive technology not just for myself but for other people. For example for months I had promised to write a tutorial about how to do switch control using an Adafruit Bluetooth device and an iOS device such as iPhone or iPad. One of the very first things I did once I had settled back in at home was to finish that tutorial. I’ve also connected with another group called ATmakers.org which is run by a man named Bill Brinko. His organization is working with high school STEM programs to encourage kids to use their science, technology, engineering, and math skills to assist disabled people with their assistive technology needs. I now have a very deep commitment to make sure that everything I know about assistive technology gets passed on to other people who can make use of it. The folks at Adafruit have also taken up assistive technology as one of their pet projects. They are working with me and Bill to develop new devices that will be of use to the AT community. Now that I have my voice back, I’m using as much of it as I can to give voices to others who have no voice.

The Meltdown

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

Wrapping Up a Good Day

In our previous installment I talked about a Facebook posting I had made on the afternoon of December 11 which was very upbeat. It was just a few hours later however that everything fell apart. A series of unfortunate circumstances came at me rapid fire and led me on a downward emotional spiral that was the worst of the entire hospital experience.

The 11th was a really good day. I had been off of the ventilator most of the day. Dad had brought in my laptop because I thought perhaps I could operate it using my ultimate remote Bluetooth device. It would’ve had a bigger screen than typing on my iPhone. As it turns out I discovered the on-screen keyboard built into Windows 10 wasn’t nearly as useful for switch control as was the iPhone. So I had dad pack up the laptop and told him via iPhone message that once I got that talking valve in and could use my voice control I would switch back to the laptop. I was just about to tell dad to switch the TV to AMC channel before he left so that I could watch The Walking Dead. Then things started going wrong.

My John Hurt Experience

In the classic 1979 sci-fi film “Alien”, the advertising tagline was “In space, no one can hear you scream.” The most memorable scene of course was when the character played by John Hurt suddenly starts having a convulsion and spitting up blood at the dinner table. His fellow astronauts swipe all of the food off of the table and lay him out. His stomach starts bulging and a small alien creature bursts through his abdomen spraying blood everywhere before scurrying off to the hidden recesses of the spaceship.

My experience fortunately wasn’t anywhere nearly as bad but I was put in a position where I had horrible pain in my belly and I couldn’t scream.

It started when I noticed something wet on my belly. I thought perhaps I had missed peeing in the urinal that I kept propped up between my legs. I asked dad to check the urinal. It was in the proper place but he soon noticed the cause of my unexpected wetness.

My G-tube had come out of my abdomen.

A G-Tube is a rubber tube that goes through a hole in my abdomen and sticks into my stomach for feeding. I had had one since the previous May because it became too difficult for me to swallow food normally. The G-tube is held in place by a small inflatable balloon on the inside that keeps it from pulling out. However if the balloon bursts, there is nothing holding it in place and it just pops out.

A couple of months earlier, we had accidentally gotten the tube tangled up in my covers and when I rolled over in bed, we yanked it out. We stuck it back in temporarily but had to go to the ER to get it replaced. Since then we had been very careful not to get the tube tangled up in anything.

Unfortunately one of the many consequences of not being able to speak was that I could not warn people if the tube was getting tangled up. Over the past several days there had been many times when it had been yanked upon pretty severely. At that point I wasn’t surprised that it came out. I was more surprised that it had stayed in that long. Usually the tube hangs out of me about 6 or 8 inches and we pump the formula into it using a large syringe. But in the hospital they had kept me connected to a pump machine with a long tube. On several occasions, one quite memorable, a respiratory therapist had gotten tangled up in it and it had gotten yanked. I hadn’t said anything to anyone because it seemed to be holding up.

So when Dad discovered that it had come out again I was frustrated but not worried. I don’t recall if we temporarily put the tube back in or what we did to keep me from leaking further. The bottom line was they sent for some surgical residents to come in and replace the G-tube. It had gone smoothly in the ER a few months ago when Dad and I had pulled it out. I didn’t expect any complications.

Unfortunately these residents didn’t seem to know what they were doing. I think they were using a larger diameter tube than I had used previously. They kept trying to jam it in but it wouldn’t fit. The pain was phenomenally bad! And the worst part was, I couldn’t even grunt or yell or do anything to let them know how much it hurt. It had been bad enough the past several days that I could not talk. Now I couldn’t even yell or moan when I was in excruciating pain. I felt like I was living in outer space and no one could hear me scream.

One group of residents gave up and another one came in later. They had decided that as a temporary measure they would insert a Foley catheter. Foley catheters are normally used for your bladder. However like a G-tube they are small rubber tubes with the balloon anchor on the end of them. Foley’s come in lots of different sizes and so they searched around to find a small gauge pediatric version hoping that it would go in the hole easier.

Unlike the G-tube however which has a valve on the end it makes it easy to fill, a Foley catheter just has a cap which you can close when not in use. I presumed this was just going to be a temporary fix until they could do it properly. Fortunately the Foley catheter went in much easier and painlessly. Well… not 100% painlessly because I was still pretty sore from the previous botched attempt. But things were okay for the time being.

To Sleep… Perchance to Dream

Dad had to leave before they got the Foley inserted but I told him he could go. I have an archived iPhone message where I told him to turn the TV on AMC channel so I could watch The Walking Dead and I told him to tell the nurse I was ready to get back on the ventilator. I was hopeful that I would not have any more personal drama for the evening and could just watch some good juicy zombie stuff on TV. Unfortunately there was more drama in my life to come that evening.

Since I had had the trach installed on December 7, I spent most of my time connected to a ventilator. The plan was to gradually wean me off of the ventilator and eventually install a device called a Passy-Muir valve that would allow me to talk normally. I had always presumed however that I would still need the ventilator at night in order to sleep. For 25-30 years I had been totally dependent on a CPAP machine in order to sleep at night. There was no way I could get comfortable and breathe well enough to get to sleep without some sort of respiratory support. When I had first agreed to the trach, I presumed possibly there was a way I could use it with my regular CPAP. I should’ve asked but I didn’t.

On the evening of the 11th when I was ready to get back on the ventilator so that I could go to sleep, the respiratory technician didn’t want to do it. He said that the goal was to get me off of the ventilator as much as possible.

I could not have been more blindsided. Nobody had ever indicated to me that I would be expected to be COMPLETELY off of the ventilator especially since I had been so dependent upon the CPAP. They tried to explain to me that the CPAP was designed to keep your upper airway open. It keeps your throat and upper airway from closing. When it closes it causes you to stop breathing. That is what they call sleep apnea. Because I had the trach, I would not be breathing through my mouth or nose anyway so theoretically I didn’t need the CPAP.

However even though I needed the CPAP to keep my upper airway open, I was also using it to assist me keeping my lungs inflated. In many ways I had been using the CPAP as if it was a ventilator. I needed it to get volume in my lungs. Of course trying to explain that in an iPhone message typed using switch control was nearly impossible. Here’s all I was able to say…

At home I’ve been on cpap for 30years
I I need it or I will never be able to sleep without it .
I don’t use cpap for snoring . I need it to kee
We will figure this out tomorrow

In between each of those sentences lots of other people were saying lots of things and I couldn’t participate much in the discussion. The bottom line was they agreed to put me on the ventilator at least for one more night.

As if I didn’t have enough problems, sometime during the night that night, my nurse call switch quit working. Fortunately I did not need it much during the night. The nurses were in and out and I slept as best I could although my mind was racing and I was getting very furious and very upset. The inability to talk was just too much for me to handle. The pain from the botched G-tube insertion, the argument with the respiratory people over the ventilator, it just all was weighing down on me too much.

Planning to Leave

I don’t recall how well I slept at night and I don’t think it was very well. My mind was racing about all of the things going on. I had decided that I need to put my foot down and get on that talking valve right now. There were too many things going on that I needed to talk about. Amidst all this on the morning of the 12th we had a visit from a woman who was my case manager. It was her job to prepare me to get out of the hospital and to give me whatever support I needed once I got home.

I was getting well enough that I really didn’t belong in the ICU. However they have a rule that on a regular medical floor you’re not allowed to have a ventilator. So they could not move me from ICU to one of that regular floors. The alternative was to move me to a different hospital called St. Elizabeth Ann Seton. Actually the technical name is “St. Vincent Seton Specialty Hospital”. It’s located just a couple blocks down the street from the regular St. Vincent Hospital where I was. While I would’ve preferred to stay in regular St. Vincent, if the rule was there could be no ventilators on the regular floors I really didn’t have a choice.

We also discussed (or rather they all discussed in a way that I could not participate) the fact that I was going to need a ventilator when I got home. According to the case manager, the process of getting a home ventilator takes 2 weeks minimum! At first I presumed that delay was to get Medicare/Medicaid to approve the device. I thought that was insane. When I needed a CPAP they just called up a medical supply place and said “Get this guy a CPAP” and it was there in no time. I later discovered that the delay wasn’t necessarily the insurance issues. It was a whole complicated process where they have to come to your house and make sure that your electrical system is okay, train your family members to operate the equipment, the whole thing was a mess.

At one point I got a visit from Dr. Chad Davis. He had been the surgeon who had done my bowel resection back in 2006 as chronicled here

“Interesting Times”… In the Chinese sense of the words.

I really liked Dr. Davis as you can read in those previous articles. He was there to report on my G-tube situation. The previous night after they got the Foley catheter inserted in the G-tube hole, they had taken an x-ray to make sure that it was in the proper position. He had read the x-ray and came in to tell the nurse that it was okay to start using the Foley to feed me. The nurse looked at him like he was crazy. We had already heard the results of the x-ray and I had had 2 feedings already. The nurse said to him “This Foley is just temporary right?” Much to my surprise and disappointment he said “No… It will be okay. We can just leave it in.” My reaction runs “Like hell you will!”

The Ultimatum

This G-tube versus Foley situation only furthered my frustration that I could not discuss these issues. Decisions were being made with little or no input from me and that’s not the way I operate. I was depressed, angry, frustrated… there are not enough adjectives to describe what I was feeling. So I went about composing several messages. Here are the contents of those messages courtesy of my iCloud archives.

Here was a message I wrote to dad when he arrived the morning of the 12th…

News from over night
I took more laxative last night and it will kick in sometime today so be aware.
Surgeon says folly cath in stomach is not temporary but I want it replaced with proper kind

Here are series of messages that I wrote expressing my anger and frustration.

Note for doctors. Nurses, everyone,
I need to be able to talk. Too much going on and I can’t deal with it by phone! I’ve got to be able to talk as soon as possible! Everything else can be resolved once we get me TALKING!!
If you’re wondering “is he pissed off?” The answer is YES.
Sorry. I’m not blaming you or anyone. I just need to discuss too many issues that can’t be resolved by twitter-like messages.
Can we rig something temporary such as finger in hole just so I can discuss issues?

issues I need to discuss with doctors
I’ve already said I want to talk but if I can’t then I will have to type. I’m preparing multiple messages in case we can’t get me talking but these messages don’t fully address my concerns. That is why I want to talk.

Issue#1 cpap
I’ve been on cpap over 25yrs and experience says I’m totally unable to sleep without it. I’m aware its primary role is open upper airway but I feel I’m also using it to keep my lungs inflated. Its hard for me to believe that I could sleep without mechanical assistance. I feel that the cpap has been working as more of a vent and I’m dependent on it. I’m willing to try sleeping without vent or cpap but I’m highly skeptical. I hope to try it nap this afternoon but ironically I slept really well last night.

issue #2 vent
I did all afternoon yesterday but required multiple trach suctioning throughout the day. I’m doing well today but still need trach suction from time to time. Do you have concerns that my need to suction is still ongoing?

Issue #3 G-tube
Last night I believed that use folly was temporary but the surgeon Dr.Davis said it can stay. I’ve had him before and I like him but I don’t agree with hims this time. I really want a proper g-tube of appropriate length and diameter and with a valve like I had when I came in here. I’m willing to go down to radiology if needed. Last night surgery residents hurt like hell jabbing around blindly.

Issue #4plans
I’ve taking things one day at a time but I feel blinded by some of these issues (such no more cpap). I need it discussed completely so I’m prepared. After I began writing this the case manager came in and raised a dozen issues that had not yet been discussed. This is why I need to talk.

I think the main person who read all of these messages was the young female resident Dr. Heaven. She took the time to read the messages and she understood that I was really serious about all these issues. The nurses were also well aware that my whole attitude had changed. One of them actually expressed concern that I wasn’t my usual cheerful self. I have written a separate message that repeated that line about “If you think that I’m pissed off then you are right.”

The nurse said I needed to be able to look out the window to cheer me up or perhaps to watch some TV. I found some time to write her a message as follows.

For nurse
I have to giggle when you say I need a window. You should see my office at home. One window mostly closed. I like my man cave 😀
Regarding TV I’m too busy frantically writing notes because even once you get them here I’m not confident they will let me talk. 😠

That last line reminds me that Dr. Heaven had asked for the other doctors possibly the attending doctors to come in and talk about getting me the talking valve. At some point the attending doctors did come in and they agreed that we could try the valve. My recollection was that it was perhaps 1:30 or 2 PM before they arrived. Then they needed to write orders to the respiratory therapist to actually bring me the valve.

Meanwhile I had other issues to attend to. Some of the nurses were having a difficult time using my message board. They would point to each letter one by one rather than using rows and columns. So spelling messages to them was getting really difficult. Even if I was going to have the talking valve soon, I was still going to need the communications board at night when I was on the ventilator. I wrote dad the following message.

When you get a chance you need to show nurse how use the letter board. She has been pointing to every letter. Show her how we pick the row before picking letters.
She needs to train night nurse how to use board

There were a series of other passages that showed how inpatient I was becoming.

Can you see what going on?
Docs said they would call RT an hour ago

very anxious to try valve
lots decisions being made and I need to weigh in. Hard to do without talking 😀

I’m not sure if that last message was to my dad, a nurse, or Dr. Heaven. It was the last message that I wrote on my iPhone on December 12. In a Facebook message I also expressed my frustrations. In a message posted at 1:26 PM I said “doing well today but being unable to talk means can’t properly participate in planning. The issues are too complicated for brief messages I’ve been typing on my phone to my doctors”

The Prayer Request

I think it was about now that I decided to send some text messages to Judy to ask for prayers. So we have come full circle. This was the point in time that I talked about in the very first installment of this story. The first of two messages said

I’m feeling wonderful physically but not talking is looping me [out] of important discussion. loud noise from south side is my mom spinning in her grave 🙂

Judy said she literally laughed out loud when she read that. I then followed that up with the following message.

I’m been raising hell all day with some minimal progress.
Pray that they listen to the man with no voice.

In case you forgotten, you might want to go back and reread the first installment of this series which you can find here… It describes my emotional state on Monday, December 12 at 3:36 PM when I wrote those words. Basically when I reread what I had just written it shocked the hell out of me. It’s so perfectly described the sense of despair and isolation that I was feeling at that moment.

The next text message to Judy said

This whole situation is a mess but on okay. Hugs

She replied

That’s all I care about… your feeling better. The messes will be resolved. I will pray for patience and peace to you. Love.

The Reply

There’s a saying that says “God always answers our prayers. Sometimes that answer is ‘No'”. Fortunately for me this time the answer was “Yes”. I don’t know exactly what time it was, but very shortly after that text exchange I sent her the following text message.

Just got “talking valve”! Damn your prayers work fast!

At 4:30 PM less than one hour after my desperate prayer request I posted this on Facebook.

Shortly after that Carol walked in and about freaked out when I said “Hello”. She was so surprised and relieved that I was talking. Soon thereafter dad left because he liked to get home before it got too dark. I had Carol grab my iPhone and we went on Facebook live to post the following video.

Before Carol left at about 7:30 PM we always had a series of things that I would ask her to do before she left. She would move the iPhone out of the way and plug it in to the charger. She would make sure I had my call button in my hand and my hand was propped up properly. We would have to get the TV on the right channel. Get my little “Chris Young users manual” properly in place where nurses could discover it. In the past it had taken us maybe 15 or 20 minutes to do all of this because I was typing instructions on the iPhone to tell her what to do. Now that I could talk, we were able to get everything organized for her to leave for the day in just a couple of minutes. The difference was amazing.

I would like to be able to say that finally being able to talk resolved all my problems but it didn’t really. I still had the wrong kind of G-tube in my belly. I was still facing the fact that I didn’t belong in the ICU but could not be moved to a regular room because I don’t allow ventilators. I still had the issue of when I need the ventilator in place of the CPAP at all or were they correct that now that I had the trach I didn’t need anything else to sleep. And if I did need a ventilator at home, it was going to take 2 weeks for me to get it. But at least now that I could talk, I can start resolving these problems one by one.

Our next installment of the story will probably be the last in the series. It will recount my final day at St. Vincent Hospital and my transfer to Seton Specialty Hospital. I will then start an entire new series of articles about my recovery at Seton Hospital. That story will not be nearly as dramatic or stressful as this one has been. It’s time to wrap up this story about the man who couldn’t speak. Because obviously… Now I can!