This week we explore the transitions I’ve had to go through in my life as it relates to my ability to get out into the world and do ordinary things like enjoying a movie with my friends. It’s based on an essay I wrote for my writing seminar. Note there are lots of movie clips in the YouTube version of this week’s podcast so you might want to watch it on YouTube.

Hi, this is Chris Young. Welcome to episode 51 of Contemplating Life.

I planned to get back to the stories about my college days at IUPUI. But this is movie awards season. The Golden Globes will have already been awarded by the time you see this. Oscar nominations come out January 27 (not the 17th as I said in the video) and the Oscars will be awarded March 10. I hope to be able to see all of the Best Picture-nominated films and review them here as I did last year. I’ve already started watching some of the contenders. To prepare for my Oscar reviews, I want to spend an episode or two talking about what movies mean to me.

Today’s episode is based on an essay I wrote for my writing seminar. We were told to write about a character in transition. I chose to write about the various transitions I’ve had to go through in dealing with my disability and the effect it has had on my independence and my ability to enjoy entertainment. My writing instructor, award-winning sci-fi author David Gerrold, had high praise for this essay and several of my fellow students had nice words about it so I hope you enjoy it as much as they did.

Recently, on the Friday between Christmas and New Year’s, I went to the movies with my friends Rich and Kathy Logan. We saw “Aquaman and the Lost Kingdom”. It was pretty good but after a while, all of the superhero movies tend to feel alike. It was worth the trip to the theater and I really enjoyed the 3D but overall it probably wasn’t that great of a movie.

I guess that for most of you, going out to your local Cineplex and catching a film with your friends is something you take for granted. For me, I can’t do that. Every time I go to the movies, somewhere in the back of my mind is the idea that it might be my last time. I’m not talking about my own mortality here. Someday, we’ll all see our last picture show. We know not the day nor the hour when that will happen.

I’m talking about my ability to get out of the house and see a movie in a theater. There’s something special about seeing movies on the big screen with multi-channel digital surround sound, especially in IMAX or IMAX 3D. As the IMAX marketing phrase says, “Watch a movie or be a part of one.” Movies have the capability of transporting me to places, real or fantastic, that I could not go otherwise. It’s wonderful that we have access to so much entertainment via cable and streaming but nothing replaces the magic that happens when you see a film in a theater with a crowd of people. The reason that such an event is so precious to me is that on more than one occasion, it felt like it might be the last time I ever had that opportunity.

I’ll never forget the day back in 1979 when I had such an experience.

It wasn’t the last movie I would ever see in my life, but it was the last movie I would ever see in a theater by myself. For such a significant milestone, it should have been something great and memorable. It wasn’t. It was the comedy farce “The In-Laws” starring Peter Falk and Alan Arkin.

I was about a month short of my 24th birthday. A few months prior, I had to quit my job as a computer programmer for the Indiana University Department of Medical Genetics. My disability had worsened to the point where I could no longer work a full-time job. After two weeks in the hospital recovering from congestive heart failure and several months home in bed I was finally getting out into the world again.

Going to the mall to see a movie on my own was something I’d done dozens of times since I was a teenager. My parents would drop me off, I would see the film, and they would pick me up when it was over. Getting out of the house to the movies was my celebration that things were finally getting back to normal.

In those days, they didn’t have stadium seating in movie theaters like we do today. The floor transitioned from a gentle slope near the front to a steeper slope at the back. There were no areas designed specifically for people in wheelchairs. I had to sit in the aisle which meant that people often ran into me in the dark. It was uncomfortable to sit on the sloping floor so I always sat near the front where the slope was less severe.

About halfway through the movie, I started to slump slightly in my wheelchair. I could feel myself getting more and more uncomfortable. I feared I would slump over sideways, my hand would slip off my wheelchair joystick controls, and I would be unable to get it back again. I would be stranded there. There were very few people in the theater and they were all sitting behind me. So, when the movie was over, no one would be walking by and I could easily get their attention and ask for help. They probably would all have left not knowing that I was stuck there. I didn’t look forward to the idea that I was going to have to yell for help when the movie was over.

I was filled with anger and frustration. I thought that after recovering from heart failure I was back to normal but this was in no way normal for me.

I had to try to get my wheelchair onto level ground. I was already sitting very near the front because the slope of the floor was less severe but it wasn’t enough. I turned my wheelchair around and drove up the steep slope of the theater aisle. It took everything I had to maintain control as the aisle steepened on the way up. There was a level area at the top near the door. I thought perhaps if I sat there, I would be safe.

It took everything I had to get up the steep slope without my hand slipping off of the joystick or my head flopping backwards but somehow I made it to level ground. At last, I would be able to watch the rest of the film.

But after a few minutes, I felt myself continuing to slump over. I finally gave up. I drove my wheelchair to the theater door, pushed it open with my footrest, and drove out to the lobby of the theater in the mall. There was still about a half-hour left in the movie but I didn’t care anymore.

I sat there quietly with tears streaming down my face until my dad arrived to pick me up. I was so weak I couldn’t drive my wheelchair anymore and he had to disengage the motors and push the wheelchair himself.

By the next day, I had recovered enough that I could continue to drive my wheelchair around the house but I knew that I would never be safe to be out in the world on my own again.

It wasn’t just the end of seeing movies by myself. It was the end of the most independent era of my life as a disabled person. I’d gone to college and had a full-time job. My dad would drop me off at work or school and I would be on my own all day long.

In my college years, during the summer I would drive my wheelchair all over the neighborhood in a routine that I dubbed “The Grand Tour.” I would travel about six blocks to the local branch library and check out the latest Scientific American or a sci-fi book. Then I would drive a half-mile down 34th St. to the Burger Chef for lunch. I would go across the street from there to the drugstore, pick up a magazine or comic book, maybe a candy bar, and return home.

Each year during May, mom would drop me off at the Indianapolis Motor Speedway and I would spend the whole day at the track watching cars practice. I’d tour the garage area, and talk to mechanics and drivers.

All of these expressions of my independence came to a crashing halt at that stupid little movie that evening in late June 1979.

It wasn’t long after that that I lost the ability to feed myself. I could no longer type on my computer keyboard. Driving my wheelchair around my house even on level ground with no bumps became difficult.

I sank into a deep depression. I asked myself, “Where is that well-adjusted handicapped person I used to know named Chris Young?” The answer was obvious, he died when I lost the ability to use my arms effectively.

After sulking for many days, I did what I had always done… I found a way to adapt.

I discovered that if I propped my elbow up on the armrest of my wheelchair and stood up my computer keyboard on an easel so that the keys were facing me. I could use a long pencil or a wooden dowl rod to poke at the keys on the keyboard. We wired small pushbuttons into the Shift and Control keys on the keyboard. I would type with my right hand and work the buttons in my left hand.

I also discovered that if I held this typing stick in my mouth, and held the other end in my hand, it would steady my right hand on the wheelchair joystick. In some respects, I was using the mouth stick to push my hand which in turn pushed the joystick. That gave me the ability to get around the house or to go outside if it was on smooth ground. But I wasn’t able to go anywhere alone anymore.

Shortly after that last solo trip to the movies, Dad and I went to the movies together. We saw one of my favorite cheesy disaster films of all time “The Cassandra Crossing.” It featured an ensemble cast that included Sophia Loren, Richard Harris, Burt Lancaster, Lee Strasburg, Ava Gardner, Martin Sheen, and O.J. Simpson. A group of people on a European passenger train were infected with a deadly virus. Fearing that the infection would spread, no country would allow them to stop. Officials eventually routed the train onto a bridge over a deep gorge called the Cassondra Crossing where they planned to blow up the bridge and kill everyone on board. The special-effects miniatures of the train crashing into the canyon were spectacular. Dad and I both loved the movie.

Shortly after that Dad and I saw “Apocalypse Now”. Not only was I getting to season good cheesy action movies, I also got to see some quality filmmaking and it brought Dad and me even closer together to share these kinds of films.

I’m blessed by other friends and family who have taken me to see countless movies over the years and they still do so to this day.

Over the years, I’ve had to make more and more adjustments as my ability has diminished further. Eventually, I could no longer type on my computer at all. Fortunately, voice control software was developed that allows me to dictate into a computer and have complete control of all of its functions. If you’d asked me back in the 70s when I first began studying programming if computers would ever understand speech accurately, I would’ve said never in my lifetime. But for decades now voice recognition has been my only means of computer access.

Seven years ago I lost the ability to drive my wheelchair completely, but I got a new wheelchair with new controls. A tiny joystick is mounted on a collar that fits around my neck and I can push the controls with my lips. I also use that joystick as a mouse on my computer. I strap my head onto my headrest so that it stays firmly in place and I am much more mobile than I was when I was trying to control the joystick with my hand. I can now ride over bumpy ground safely. I still don’t go anywhere unaccompanied.

In December 2016 I had to have a trach installed in my throat. Periodically I need to have it suctioned. I don’t go anywhere without my suctioning machine. At first, I was reluctant to ask friends to go to the movies with me because they would have to operate the suction machine if I needed it. It wasn’t anything beyond their capability but I didn’t want them to have to be a nursemaid to me.

The first movie I saw after I had my trach was in March 2017 when I went with my friends Rich and Kathy Logan to see the Marvel Comics movie “Logan”. It featured Hugh Jackman in his last film in which he played Wolverine. I had a history of seeing Logan movies with the Logans. The first film we saw together was “Logan’s Run” back when we were at IUPUI together. More on that story another day. Anyway, for this movie we brought my dad along in case I needed to be suctioned. Rich, Kathy, and I enjoyed it but he hated the movie. Again, I worried that my moviegoing days were numbered. Trying to find a movie that my dad and my friends would all enjoy was going to be a challenge.

After that, I finally got the courage to ask my friends if they could do my suctioning. My most loyal friend Rich said, “We were wondering when you were going to get around to asking. Of course, we can do it. We’ve been adapting to your disability along with you for decades now. This is just the next phase.”

Because my stamina continues to fade gradually, I wasn’t certain I could ever go to a concert again but since I got my trach, I’ve seen some of my favorite acts including memorable concerts of Peter Frampton, The Trans-Siberian Orchestra, Steve Miller Band, The Who, and Sting thanks to my sister Carol who accompanies me. Carol and I also catch a couple of hockey games each year. Although, we try to go to afternoon games because I have a hard time staying up late.

These days, I’m still able to get out to the movies with friends and family but I pick and choose them carefully. I go for the big blockbusters in IMAX and/or 3D. If I’m willing to risk COVID, flu, RSV, and God knows what else being out in public as well as the strain on my ever-diminishing stamina, it had better be something big and spectacular. I have seen Dune, Avatar 2 twice, and Oppenheimer in 70 mm filmed IMAX. Rich, Kathy, and I have seen every Star Wars film together over the years in the theater sometimes multiple times as well as most of the major Marvel and DC movies. This latest visit to see Aquaman 2 was just the next in a long series of such films.

My life has been a constant struggle to keep up with my ever-changing ability. I’ve had to reinvent myself and my activities multiple times over the past 68 years. And I will keep adapting until I can adapt no more.

One of my good friends who went by the nickname Buz, who was a fellow Christian, once told me he couldn’t wait until we meet someday in heaven and I could run up to him and give him a big hug. I told him, “Buz, I don’t see myself walking in heaven. For me, heaven is a place where I’m disabled but it doesn’t matter anymore. To the extent that you, my other friends, and my family try to give me as normal a life as possible, you make Heaven on Earth for me.” Much to my surprise, I’ve outlived Buz. When I make that final transformation to the next phase of my existence, I’ll roll up to Buz in my heavenly wheelchair and give him a big “I told you so.”

And I’ll see my parents again and Dad and I will talk about how cool it was when that train crashed into the Cassandra Crossing that first time he took me back to the movies after I couldn’t go by myself anymore.

Until then, I have lots more movies to see. I’ve not yet seen my last picture show.

Okay, this is me about a week later after I originally recorded this. I’ve been working on editing all of the video clips of the movies into the YouTube version of the podcast. I realized something awful.

The whole thing is a lie.

Well, not the whole thing. Just the part about “The Cassandra Crossing”. When I looked up the trailer for the movie and looked it up on the IMDb website, I found out that “The Cassandra Crossing” was in 1976 three years before “The In-laws” in 1979. However, “Apocalypse Now” was indeed in 79, and now that I think about it, it really was the first film I with my dad after I quit going by myself. Dad and I did see “The Cassandra Crossing” in 76 and it was indeed one of our favorite films but it just wasn’t the first one after I quit going by myself. But as they said in the classic film “The Man Who Shot Liberty Valance”, “When the legend becomes fact, print the legend.” Dad and I watching that train wreck was legendary. So what if the timeline really doesn’t work out?

One more quick confession… I never have seen the 1971 Peter Bogdanovich film “The Last Picture Show”. So, certainly that part of the podcast is true I’ve not yet seen “The Last Picture Show” either figuratively or literally.

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