My First Wheelchair

In my last installment I talked about why I am shopping for a new wheelchair. I said I was going to take a look back at other wheelchairs I’ve had over the years.

Chris Young B.W.C. (Before Wheel Chair)

I never was able to walk or even crawl as an infant or toddler. I guess I didn’t toddle at all. In an attempt to crawl if you laid me on my stomach, I could work myself up on my elbows and hold my head up. As I started to write this I was originally going to say that I could never get my knees underneath me into a crawling position. Then I dug up some old home movies that did show me in a crawling position on my elbows and knees. At first I thought perhaps I had been placed in that position but a brief final clip before the film ran out showed me lying on my stomach with my legs stretched out flat and my upper body propped on my elbows. Then I proceeded to scoot my elbows backwards until I was up on my knees. However I don’t think I was ever able to really crawl. My recollection is that once propped up on my elbows I could sort of lunge forward and fall and actually move forward down a couple of inches. I don’t believe I was ever able to push with my legs in a crawling motion. To paraphrase Woody talking to Buzz Lightyear “That’s not crawling… It’s falling gracefully”. The old 8 mm movies did not show me actually crawling. You can see this video on YouTube further down in this blog. The “”not quite crawling” portion is at the very end of the clip. It was taken when I was one and a half years old at Christmas 1956.

Although I couldn’t find a picture of it, at one point they sat me in one of those spider walking things that you put babies in and they push them with their feet. I distinctly remember being in one so they must of put me in one at about age 2 or so. I can’t imagine that I would have a memory of being in it at an age in which you normally put a kid in one of those things. I could sort of rock back and forth and make it move an inch or so and I did push a tiny bit with my feet. However to make those really work, you have to be able to pick up feet to take a second step. I could not lift my legs once I had pushed. If I tried to drag them forward it would probably push me backwards again. I just remember that despite all of the coaching and “come on you can do it Chris” that I never was able to move the gadget more than an inch or two.

They also bought me a tricycle but I remember it was too big for me. My feet would not reach the pedals. I think they put wooden blocks on the pedals at one point but I still didn’t have sufficient strength in my legs to make it work beyond simply rocking back and forth and hoping to nudge it forward. Here is a video I spoke of earlier. It shows me sitting on that tricycle which apparently was a Christmas gift in 1956. Obviously it was too large for me at that age but even as I grew up I was never able to pedal it with my feet.

The video begins with images of me on the day of my baptism. Shows other images of me as a newborn. Then there is a sequence of me sitting in a baby chair playing pattycake I’m about one years old. I do not remember that chair. Then it continues with the Christmas 1956 sequences.

I also found this photo of me in a little red wagon so I suppose theoretically that was my first “wheel” chair. It looks as though the photo may have been the same Christmas as the tricycle so I guess the tricycle and the wagon are tied for the title of “first wheeled vehicle”.

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I don’t have any memory of sitting in the wagon. I remember seeing it stored in the rafters of the garage many years later along with the previously mentioned tricycle. I remember the first time I saw the tricycle in the garage rafters and being surprised at how small it was. I remember it as being huge especially since it was too big for me.

Just about every photo I found of me before age 5 showed some adult holding me and that is my recollection as well. Before I got my first wheelchair I was simply carried everywhere. When not being carried I set in a small chair at the end of the coffee table in the living room. I do have vague memories of the rocking chair shown in the Christmas video. It had a music box and a small plunger on the runner so that when you rock back and forth it would push the plunger and play the music box. I recall that it was a little bit unstable and could tip over backwards if you are not careful. They put a little screw in one of the runners that we keep from rocking backwards too far. I guess that was sort of an early version of a wheelie bar.

After the rocking chair I spent a few years sitting in a cardboard kid’s chair which I distinctly remember. The only decent photo I found of it was this 1958 photo of me in an astronaut costume for Halloween.

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Although I was still at the carrying around age and did not yet have wheelchair, we later tried to come up with creative costumes for me to wear on always that incorporated the wheelchair. Click here to see photos of the various ways we tried to build my wheelchair into Halloween costumes.

The cardboard chair was later replaced by a similar sized chair that was a swivel rocker with white leather or plastic upholstery and black trim. I did find some old photos of me sitting in that chair but they really didn’t show much of the chair so I didn’t bother to scan them. Since I was three years old in the previous photo, I must have gotten the white upholstered chair at about age 4.

I spent all day in those little chairs sitting at the end of the coffee table in the living room playing with toys. We also had a sandbox in the backyard that I would occasionally sit in and play with the sand. However for dinner I set in a high chair at our dining room table for many years. I have lots of memories sitting in that chair. I also distinctly remember having a recurring dream sitting in that chair and having it tip over sideways but I would always wake up before it hit the ground. I guess it’s the typical falling and waking up dreams that everyone has but for me it was always tied to the highchair. Here is a photo of me in the highchair on my fourth birthday. It was taken in our backyard here on Cossell Drive. The photo is looking south and it’s amazing because there are no trees, no big privacy fence, no screened in porch at the Tillery house to the south of us and no garage on our property either. There is a possibility the garage had been built by that time and simply as too far to the left to be seen in the photo. But our garage was not built at the same time as our house. We had it built later probably about this time. And get a load of the three-tier cake! Perhaps that was an indication of the idea that perhaps I wasn’t going to be around for very long.

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The First Wheelchair

Sometime when I was five years old, probably before I started school, my parents purchased my first wheelchair. They encouraged me to try to push it with my arms. If I was on completely smooth ground like our tile floors in our house I could push it forward with my hands on the wheels. I could only move about an inch or so per push. Again it was almost like that “falling gracefully” situation. I would get a grip on the handrails connected to the wheels and then sort of lunge my upper body forward and if I was lucky my hands did not slip their grip. At four or five locations around the rim, there was a screw with a standoff or spacer connecting the hand rim to the wheel. If I could hook my thumb into one of those, I could keep a better grip but of course it only worked for one push out of about 10. I did try pushing on the sidewalk that was my front porch but even the crack in the sidewalk expansion joint was often an obstacle that was difficult to overcome. In the end I wasn’t able to push the chair any significant distance without getting myself exhausted. So I eventually gave up trying altogether.

I found a number of photos of me in that first wheelchair. This one of me fishing off of a dock at Lake Schaefer near Monticello Indiana. It is probably my favorite photo of me from that era. I just look like a having a ton of fun and I remember I was. This was before we owned the property on Cordry Lake which we didn’t get until 1965. We had friends who owned a home on Lake Schaefer and we spent a week vacation there in what was probably the summer of 1961 or 1962. I recently asked my dad did we go there twice or just once? He seemed to think it might’ve been twice.

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Here is another favorite photo from our trip to Lake Schaefer. It shows me driving a pontoon boat. I could actually drive it. It took every bit of my strength to turn the wheel but I could actually steer it. When we got the place on Cordry Lake and dad built our first pontoon boat there, I immediately wanted to try to drive it and for a few years was able to. Fortunately you only needed to turn the wheel slightly to keep it on course. It wasn’t like I tried to park it in the boat dock or do anything fancy. But I have very fond memories of the day that picture was taken and the times that I drove our boat on Cordry. I believe I was only able to move the wheel on the boat by pounding on the handles with my fist but that was enough to steer it.

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1st_chair_Lake_Schaefer_yardAmong the more memorable features of that first wheelchair was that it had very hard plastic armrests. They were not padded as were the armrests on every other wheelchair I ever owned or saw in my entire life. The armrests were an ugly dark green with some sort of marbling texture to them which looked like green marble stone. I believe that the upholstery was also dark green. It can be seen in this color photo also from Lake Schaefer. You can click any of these photos for larger versions.

I also found some other interesting photos of me in that first wheelchair. Here are three photos from my first ever trip to the Indianapolis Motor Speedway. We sat outside the front stretch. These photos are looking south towards the first turn and you can see the scoring pylon in the distance of the first one. There were wooden folding chairs in that section of the stands. I was lightweight enough that dad could just balance my chair on the rear wheels and pull me up the steps to sit there after removing one of the chairs. I would guess this was 1961 but one of the photos says 1962 although I cannot tell if that was written on the photo at the time or if it was something that my mom added to the photo when she put them all in albums about 10 years ago.

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I’ve tried to research what year it was based on the most memorable part of the day. It was a qualification day because I remembered that at one point they announced there were no cars ready to attempt a qualification and that the track was available for open practice. I remember asking questions about what was the difference between qualification and practice. At some point everyone jumped up and looked towards the first turn. The PA announcer, probably the famous Tom Carnegie, reported “Race driver Norm Hall had hit the wall in the first turn.” As you might expect from a five or six-year-old I thought it was funny that it rhymed. So I began repeating it over and over in a singsong voice “Norm Hall hit the wall! Norm Hall hit the wall!” Eventually dad tried to explain to me it wasn’t anything to sing about.

I remember from there we went through the tunnel at gate seven to the infield and we were walking along the pavement behind the main grandstand just behind the control tower which in those days was not a pagoda. I was worried we would get run over by race cars. I had thought we were on the backstretch. Dad tried to explain to me that the backstretch was way far away. But I had seen people on the top of the infield grandstands looking over the edge as the cars went down the backstretch. He explained that from that high up you could see the backstretch but they were not looking straight down behind the grandstands as I had thought.

Here is a photo of us outside the fence of Gasoline Alley. You can see some bodywork from a car sitting there. Although the photo doesn’t show it, I remember seeing parts of a race car that had crashed. I don’t know if it’s true or not, but I concluded that it must’ve been the car in which Norm Hall had notoriously musically hit the wall. I then really understood that hitting the wall at the Indianapolis Motor Speedway Was not something for which a happy song was appropriate.

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I attended practice and qualifying many, many times over the years but did not attend the race until 1993. I recount the story of my first attendance at an actual race in an article I wrote for Indianapolis Monthly Magazine. Click here to read that article titled “A Race Fan’s First 500”.

This photo is probably the earliest one that I could find of me in my wheelchair. It is from Christmas 1960. It was taken at my Grandma Young’s house on Indian Lake Road. That’s my uncle Keith with the glasses, my dad, my mom, Grandma Young, and Susie the cat. If you look closely you will see I’m holding a book of riddles. There is a long story associated with that book that you can read in my faith blog here.

The Brace

In addition to getting a wheelchair at age 5, I also got my first back brace about that time. I can tell by looking at the Lake Schaefer fishing photo that I’m wearing the brace because you can see the upper edge of it pushing out my shirt. Here is the story behind the brace.

When I was first “diagnosed” and I put that in quotes because they really didn’t have a diagnosis for me, they said that I had Amytonia Congenita. That is Latin for congenital low muscle tone. Congenital basically means “since birth”. I always said it was as if they brought this kid into the doctor and said “What’s wrong with my son? He’s got weak muscles ever since he was born.” The doctors said “Oh yes… We have a name for that. It’s Amytonia Congenita”. To which they would ask “What does that mean?” And the reply was “It a Latin phrase meaning he’s had weak muscles since birth.” To which the reply is “no shit!” It’s not so much the diagnosis of a disease as it was a description of my symptoms.

Anyway this so-called diagnosis was made at a muscular dystrophy clinic at Riley Children’s Hospital. I was seen there by an orthopedic doctor named Dr. Carl Martz. The clinic was a mess. You would go about every two or three months. Everyone had the same appointment time which was generally about 8:30 AM and then you would sit there for hours and wait your turn while possibly 20 other kids would go in ahead of you. They didn’t even bother to schedule the appointments at 15 minute intervals.

You would be seen by a bunch of interns and residents who didn’t know what they were doing. They would try to evaluate you and then report to the attending physician who you would see for about 30 seconds. We eventually gave up on them because the whole thing was just a joke. We started seeing Dr. Martz directly in his office. He was a nice enough guy and probably knowledgeable as could be expected for the late 50s/early 60s but he really never did anything for me except put me in the brace.

The brace was actually a corset. It was made out of a heavy woven material and had metal stays in it. Most of the stays were somewhat flexible but in the back there were two very heavy metal bands that were supposed to hold my spine straight. We would purchase the corset not from a medical brace shop where all of my other handicap classmates purchased their leg braces. We got it from a woman’s corset shop called Spencer’s Corsets Shoppe. The woman who fitted me for the corset was named Mona Nevitt and she looked like a cliché image of a seamstress. She had cat’s-eye eyeglasses that hung around her neck on a chain along with a tape measure draped around her neck. She had painted on eyebrows and a big 60s hairdo. I did a Google search for Spencer’s Corsets and found this page showing images of women’s corsets from 1962.

Thankfully none of the images on that page look like what I wore but if you look at the one at the very bottom of the page on the lower left, the buckles on that corset were identical to the one that I wore.

When Dr. Martz retired, I did not sign up with another orthopedic doctor. In retrospect it was probably a mistake as my spine continued to get more and more curved. I should’ve had spinal fusion surgery sometime when I was a teenager. Most kids with Spinal Muscular Atrophy (which is my correct diagnosis) do get spinal fusion. It wasn’t until I developed congestive heart failure in my early 20s and I had to quit work that I went to a different doctor. I started seeing an internal medicine doctor named Dr. Daniel Boyd. He realized that the corset was restricting my breathing and he sent me to an orthopedic doctor who got me the current brace that I wear now. It’s basically a plastic body cast that runs from my chest/armpits all the way down to my waist.

Speaking of medical equipment that needs to be replaced, the same plastic race I’ve been wearing for nearly 40 years. We tried getting a replacement once but it fit me so poorly, I refuse to wear it. I leaned over once wearing it and it gave me the worst pain I’ve ever had in my life. And that’s even compared to the time my intestines ruptured and I needed emergency surgery. I screamed in pain “Get this damn thing off of me!” and I never wore it again. That was maybe 15 years ago. The original old original plastic brace that I continue to wear has cracks that have been patched. The Velcro straps and buckles have been replaced many times as has the foam inner-lining. It’s basically a timebomb which could fall apart any day but I’m not going to bother to replace it.

Final Thoughts

Anyway back to the wheelchairs. Here is one final photo of me in the first wheelchair. Thus my cousin Nancy sitting on my lap. She was born with spina bifida and uses a wheelchair herself. She did walk briefly with braces and crutches but it ended up she is more mobile in the wheelchair then she was with the braces. I don’t know when she switched to wheelchairs. I guess that’s her story to tell. This photo was dated November 22, 1962.

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One other thing looking back over all these photos. Apparently I only had one good shirt. Either that or I had several similar striped shirts that were perhaps different colors that can’t be seen in the black-and-white photos. I take that back… I had at least 2 shirts. The white shirt and the bowtie from the Christmas photo also appeared in some other photos of me on the day of my First Communion. The First Communion story is one very different blog later.

In the next installment I will show you some photos of how we modified that first chair and some wheelchairs that I used when I first went to school.

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