Links of Interest

• IUPUI website: https://www.iupui.edu/
• Indianapolis Center for Advanced Research: https://uindy.historyit.com/container.php?id=112877
• Ronald McDonald House of Central Indiana: https://www.rmhccin.org/
• “High and Low” by M.C. Escher: https://www.researchgate.net/figure/High-and-Low-by-M-C-Escher_fig11_2493735
• M.C. Escher on Wikipedia: https://en.wikipedia.org/wiki/M._C._Escher
• Prof. Emeritus Dr. John Gersting on IUPUI website: https://science.iupui.edu/people-directory/people/gersting-john.html
• Indiana University Department of Medical and Molecular Genetics: https://medicine.iu.edu/genetics
• Duchenne Muscular Dystrophy on Wikipedia: https://en.wikipedia.org/wiki/Duchenne_muscular_dystrophy
• Article on amyotonia congenita from 1945: https://jamanetwork.com/journals/jamapediatrics/article-abstract/1180094
• Dr. Donald Merritt obituary: https://www.newspapers.com/article/the-indianapolis-news-obituary-for-a-do/109490297/
• “The Me in the Mirror” by Connie Panzarino on Amazon: https://www.amazon.com/Me-Mirror-Connie-Panzarino/dp/1878067451/
• Connie Panzarino on Wikipedia: https://en.wikipedia.org/wiki/Connie_Panzarino
• Spinal Muscular Atrophy on Wikipedia: https://en.wikipedia.org/wiki/Spinal_muscular_atrophy
• Spinraza treatment for SMA: https://www.spinraza.com/
• Evrysdi treatment for SMA: https://www.patreon.com/contemplatinglife
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  YouTube playlist of this and all other episodes: https://youtube.com/playlist?list=PLFFRYfZfNjHL8bFCmGDOBvEiRbzUiiHpq

  YouTube Version

  Shooting Script

  Hi, this is Chris Young. Welcome to episode 72 of Contemplating Life.

  This week, we continue my reminiscences of my college days at IUPUI, where I studied computer science. I include the story of how my mentor, Dr. John Gersting, helped me get my first legitimate programming job.

  My eighth semester at IUPUI would not be my last. As I mentioned previously, it was going to take me at least nine semesters to graduate because of some scheduling conflicts early on and the fact that I had to drop two classes along the way. But it was all part of a plan that I had known about for some time. It was no surprise I wasn’t going to make it out in just four years.

  We have already discussed the classes I took that eighth semester, but there was another major event we needed to discuss. I began applying for my first legitimate job as a computer programmer. That is in contrast to the ghostwriting of some programs I did for a computer technology student and a small project programming a microcontroller for an electrical engineer.

  There was a bulletin board in the computer center at the “A” building on the 38th St. campus, which occasionally posted job listings for student programmers. The first one I applied for was for an agency at the University called the Indiana Center For Advanced Research. It had the acronym ICFAR, which was pronounced: “I see far”. I thought that was a very clever joke for a research facility. As best I can tell, the organization no longer exists. I don’t know the history behind it. I don’t recall exactly what kinds of research projects they engaged in, but apparently, they used computers for something.

  They occupied a small building at 1219 W. Michigan St. The building is no longer there. It was torn down and replaced with the Ronald McDonald House, where families of sick children can stay while their children are in long-term care in the hospital. just a few blocks west of IUPUI’s downtown campus. I scheduled an interview for the job and arranged to go to the downtown campus even though I was no longer taking classes there.

  I drove my wheelchair a few blocks down Michigan Street to get to the interview and had a couple of very frustrating incidents along the way. For some reason, I stopped by the campus bookstore in the basement of Cavanaugh Hall and browsed around. I purchased a really cool poster of the famous drawing by M.C. Escher titled “High and Low.” It was shrink-wrapped onto a piece of corrugated cardboard. I propped up this tall, narrow poster onto my footrest and held it with my hands. As it crossed University Boulevard going down Michigan Street, a strong gust of wind blew the poster out of my hand and onto the street. A passerby retrieved it for me, but not before it had been run over at least once by a car. Fortunately, the plastic wrapping protected the poster, and it was unharmed.

  The ICFAR building is only three blocks away from the IUPUI campus, but there were no curb cuts to make it easy to use the sidewalk. I had to drive in the street along the curb. Michigan Street is quite wide in that area, so I was reasonably safe. Apparently, I wasn’t the only person who dropped something in Michigan Street that day. I saw a very crisp, brand-new $20 bill just lying in the gutter. I had no way to pick it up, and this time, there was no one around who could pick it up for me. It’s one of the few times in my life where I really hated my disability.

  I interviewed for the job, and as far as my programming skills were concerned, I was certainly qualified, but I think they wanted something besides a programmer. It sounded to me like they were looking for more of a gopher… You know, go for coffee, go pick up printouts from the computer center, etc.

  A buddy of mine, I don’t recall his name, also applied for the job, and he got it. I wasn’t disappointed because they weren’t really looking for someone with my skills. He eventually did get to do some programming, but as I suspected, he was just tired as a flunky to do odd jobs.

  As I recall, it was only a couple of weeks later that another notice advertising for a student programmer appeared on the bulletin board. The notice said, “See Dr. John Gersting for details.” At my earliest opportunity, I dropped by his office in the “K” building on the 38th St. campus to find out what kind of a job it was.

  “What can you tell me about that job listing on the computer center bulletin board?” I asked.

  Gersting went into a lengthy speech explaining that he was just a consultant on the project and that he couldn’t pull any strings for me. I would have to earn the job on my own. When he finally wound down, I said, “I’m not looking for favors. The notice says to see you for details. Consider yourself seen. What is the job? How do I apply? I don’t know anything about it. I might not even want the job.”

  He explained that it was at the Indiana University Department of Medical Genetics, located in the research wing of Riley Children’s Hospital. They were building a computer database of genetic testing results on 15,000 families. The program was written in BASIC, which I had taught myself back in high school, so I was quite familiar with it. He gave me a phone number and told me to ask for Dr. Coneally.

  That was on a Thursday. I didn’t get a chance to call until Friday afternoon. When I asked for Dr. Conceally, they said that he was in the weekly Friday afternoon staff meeting and I should call back on Monday.

  When I called, I spoke with Conceally. I found him to be a gregarious and friendly person with a thick Irish brogue accent. I told him I was interested in the student programming job that Dr. Gersting had advertised.

  “Oh yer the fella that John was tellin’ us all about. Yer exactly what we’re lookin’ fur. O’course you’ll hafta interview for the job just as a furmality.”

  Apparently, Gersting had been in that Friday staff meeting and had already told them my whole life story. His claim that he wasn’t going to pull any strings for me was a bunch of baloney. He had me the job before I even interviewed.

  I did schedule an interview and expected to see Dr. Conneally there doing the hiring since he was the contact person. Instead, the chairman of the department, Dr. Donald Merritt, MD, PhD, conducted the interview accompanied by Dr. Gersting.

  A few minutes into the interview, the two doctors began joking around with one another and Gersting got in some sort of zinger in the discussion. I don’t recall what he said. Dr. Merritt responded by flipping off Dr. Gersting! Gersting shot back a dirty look and sort of rolled his eyes. You could tell he was thinking, “Really? You are going to flip me the bird in front of my star pupil? What kind of juvenile asshole are you?” Somehow, I managed not to burst into hysterical laughter. I had to agree with Gersting. It was a childish move.

  At one point, Dr. Merritt asked me, “What’s your diagnosis?”

  I didn’t understand what he was asking. I thought he wanted me to diagnose something. He then explained, “No, I’m asking with what were you diagnosed? Tell me about your handicap.”

  “Okay, well, it’s some sort of genetic neuromuscular disease like muscular dystrophy. I’ve got a second cousin who has Duchenne Muscular Dystrophy, but it’s not that because I never walked when I was young. The doctors here at Riley Hospital called it ‘amyotonia congenita’ but that’s more a description of my symptoms rather than a diagnosed condition.”

  I often tell people the somewhat apocryphal story that my mom took me to the clinic at Riley Hospital, and they said it was “amyotonia congenita.”

  She asked, “What the hell is that?”

  They replied, “It’s Latin for ‘weakened muscles since birth.’”

  “So, I bring my son and tell you he has had weak muscles since birth, and you give me some Latin phrase that means he’s got weak muscles since birth.”

  The doctors replied, “Yeah, but doesn’t it sound more impressive when we say it in Latin?”

  Okay, that conversation probably never really happened, but it’s a good approximation of what did happen when I was about two years old and first “diagnosed” with amyotonia congenita.

  Anyway, back to my conversation with the genetics doctor in my job interview. I continued, “You know better than I do that there are probably a dozen different kinds of MD. I never bothered to figure out which one it is.”

  “Don’t you want to know what kind it is?” he asked.

  “Well, Doc,” I replied, “When you can tell me which of those dozen different kinds of MD you can do something about, then I’ll worry about whether or not I have that one.”

  He raised his eyebrows a bit and replied, “Point taken. But there are still reasons you might want to know. Do you have siblings? They might want to know if their children are at risk.”

  I explained that one of my sisters was adopted, and the other was years away from childbearing age.

  He then revealed that he asked because he wanted to see if I was comfortable discussing my disability. The fact that I was ready to talk about it so candidly assured him that I was. He told me that the office manager, Randy, was a semi-quadriplegic, so they were accustomed to having employees in wheelchairs.

  I could’ve ruined the interview by talking back to the guy the way I did. In addition to the fact that knowing what particular brand of neuromuscular disease I had seemed useless, in those days, the way they tested you was quite invasive. It involved things like a muscle biopsy or connecting the electrodes to your muscles and watching them twitch. No thanks. I’m not going through that just for a label.

  Fast forward 25 years.

  I was doing a Google search for a friend of mine who did not have Internet at the time. She was looking up some medical information about a condition her nephew might have. While I was researching diseases, I decided to Google “amyotonia congenita.” One of the pages that popped up was my personal website which explained that’s what I had.

  Another page led me to a book for sale on Amazon. “The Me in the Mirror” is the autobiography of Connie Panzarino. The description said in part, “Writer, activist, and artist Connie Panzarino was born in 1947 with the rare disease Spinal Muscular Atrophy Type III, formerly called Amytonia Congenita.”

  What was this thing, “Spiral Muscular Atrophy?” That sounded like a real disease and not just some Latin gobbledygook excuse for a diagnosis. So I googled “Spinal Muscular Atrophy” and came across a blog by another woman who had the same thing. Reading about her life was like reading about the twin sister I never had. It’s so perfectly described me it was ridiculous.

  My research showed that you could get a definitive diagnosis with nothing more than a blood sample. The disease is caused by a missing chunk of DNA in your number 5 chromosome. They simply sequence that area of your DNA and if you have a missing chunk in both copies of your fifth chromosome, that means you have SMA.

  Although I had left the IU Department of Medical Genetics more than two decades prior, I called them up to see if they did testing for SMA. I made an appointment with a genetics counselor. The department had moved to a new building and was no longer housed in Riley Hospital. We talked about several people who had worked there when I was there. One of them said they vaguely remembered me from years ago.

  The counselor reviewed for me what was known about SMA at the time. I had already done much research on the condition by then but she added some information I did not know. They took a blood sample. A few weeks later, the report came back. There was a dual deletion of the seventh axion of the Survival Motor Neuron gene on my fifth chromosome. That meant I had SMA.

  We discussed whether or not my cousins or my sister Karen should be tested to see if they were carriers. They suggested that Karen could be tested if she wanted to. Regarding my cousins, they said that my aunt or uncle should be tested first to see if they were carriers before testing my cousins. None of my cousins exhibited the disease, so the real question would be about the risk to their children. I let all of my cousins know about the availability of testing, but none of them ever pursued it.

  Karen explained that it wouldn’t affect her decision to have children. However, if she was at risk of having a disabled kid, she might want to be more prepared financially to raise a disabled child.

  By the way, unless both parents are carriers, the children are not at risk of exhibiting the disease.

  In 2016, they did come up with treatments for SMA. There is a drug called Spinraza, which is a series of spinal injections. There is a drug called Evrysdi that is simply a liquid that you drink or put in your G-tube every day. I have been on Evrisdi for three years now. More about that story in a later episode

  One more story about my diagnosis. I purchased that book from Amazon about the woman who had SMA but I never got around to reading it. Not only was the author an artist and disability advocate, but she was also a feminist lesbian advocate. After purchasing that book, Amazon kept recommending to me lesbian feminist books. But for some reason, they never recommended disability-related books as a result of the purchase.

  A few years ago, I saw someone on Facebook in an SMA group named Panzarino. I asked if she was related to the author/activist Connie Panzarino. She said that Connie was her older sister. I asked her to thank her sister for her minor role in helping me find my diagnosis. She replied that Connie died in 2001.

  In upcoming episodes, I will tell about my experiences working at the genetics research lab, a summer school class that I took from Dr. Gersting, and my ninth and final semester at IUPUI.

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  I will see you next time as we continue contemplating life. Until then, fly safe.