This week we continue our series of episodes on my experiences growing up in a special education school.

Hello, this is Chris Young. Welcome to episode 20 of Contemplating Life.

This week we continue our series of episodes on my experiences growing up in a special education school.

As we contemplate life, sometimes it seems like a game of chess. In order to succeed, you have to plan ahead. Along the way, there are gains and losses. Loss is a normal part of life. We have to experience it. It’s unavoidable. The interesting thing about chess is that you can lose every piece on the board except for the king. The king is never removed from the board. When you attack the king, he is in check. If there is no escape from that check, you call checkmate and the game ends. Sometimes a player will ceremoniously tip over the king especially if the player resigns. But you never experience the loss of the king.

Similarly in life, we experience the death of others but when we die, the game is over. As a person of faith I hope for an afterlife in which I can look back at my life but it isn’t guaranteed. Even if there is an afterlife, the game of life will be over.

This is a story of loss. Of lost love. Of lost friends. Of lost opportunities. But the game goes on.

When we last left our intrepid hero, me, I had finally gotten the attention of my first love Rose Shewman. We met the next day in the back of the physical therapy department and agreed we were officially a couple. We were going steady.

Unfortunately, we were almost as clueless at age 13 about what it meant to be boyfriend and girlfriend as I was with Cheryl at age 5. We were going steady but we were going steadily nowhere We talked on the phone when we got home many times but I didn’t have a phone in my room so there wasn’t much privacy. We would spend every free moment together at school and would occasionally hold hands going down the hallway side-by-side. We would sneak away for long chats in the therapy room. A door at the back of the therapy department led to a balcony porch. One day we snuck out there with the intention of kissing. Although we were completely alone, she was scared someone would come looking for us, find us on the porch, and catch us at a bad moment. She chickened out and we headed back to class. I said to myself, “We probably blew it. Now we might never get a chance to kiss.”

Unfortunately, that was a prophetic statement. After about three weeks she dumped me. In a last-ditch effort over the phone, I tried to get her to change her mind. I was just about to tell her I loved her but my mom walked by and I couldn’t do it in front of her.

The Beatles’ song “Yesterday” became my theme song.

Again, the only thing that comforted me was the fact that there were no other guys in the picture. I kept hoping that someday things would turn around and she would take me back. We didn’t have yearbooks in junior high but we had a class photo with a cardboard frame and cover. We all signed each other’s photo covers with farewell messages. Several of the ambulatory students such as Ted Hayes and Greg Whitney were going on to real high schools. On Rose’s class photo, I wrote, “See you next year to try again.”

In response, she signed my photo, “Don’t try again. You’ll never succeed.”

My dad tried to comfort me with the old adage, “Girls are like streetcars, if you miss one, another one comes along in a few minutes.”

“They don’t make streetcars anymore. People ride buses.”

“Okay, smart ass. Then buses.”

“And how many buses are wheelchair accessible?”

He didn’t have an answer for that.

Throughout junior high and high school, I also suffered other devastating losses.

In sixth grade, they changed the policy that everyone had to take an afternoon nap. Instead, they purchased a bunch of board games and we had a sort of indoor recess for handicapped kids. We played chess, checkers, Stratego, and some other games I don’t remember the name of. I had been playing chess since third grade. I wasn’t any good because I didn’t have anyone good to play against. There were a couple of people in junior high that played but I beat them fairly regularly and they didn’t particularly like losing all the time. I probably wasn’t a very gracious winner.

There was an eighth grader named Terry Johnson who was at the time the smartest kid I had ever met. Probably the only kid approximately my age who was a real academic rival. I taught him how to play chess and three weeks later he was beating me consistently. When he graduated from junior high and I moved up to seventh grade, that gave me back my self-proclaimed title as chess champion of the junior high.

When I got to high school, we didn’t play chess anymore but we were still good friends. He got straight A’s throughout the entire 4 years of high school and earned an academic letter sweater which he wore with great pride. Sadly, high school graduation was the end for him. He never went on to college or attempted to find employment. He died of pneumonia about six months after graduation – just two weeks before Christmas. I took it really hard. I concluded, why should I bust my ass to get straight A’s when you can goof off, hang out with the bad boys, have fun, and still get B’s and C’s?

Back in episode 11, I spoke about how his loss affected my relationship with God.

Terry had the most common kind of muscular dystrophy called Duchenne muscular dystrophy as did many of my other friends from school. They started out walking when they were young but lost that ability around age 6-7. I knew that I had something different. I had never walked so theoretically one would think whatever I had was worse than the most common type of MD. That’s why the doctors told my parents when I was first non-diagnosed that I wouldn’t live very long.

In my mind, Terry had died very young but what I didn’t know was that the average life expectancy at that time for someone with Duchenne was probably 25. None of my friends with Duchenne MD ever saw age 30. I think Gene Storms died at about 16 or 17 but we were not very close. Calvin Brandon and Wayman Glass survived until their late 20s. All had Deschene MD.

Mom used to do lots of volunteer work for the Marion County Muscular Dystrophy Foundation. She would always hear when one of the MD kids (or rather young adults) would die. If I knew them, she would come to me and tell me about it. I tried unsuccessfully to become numb to it. I never went to any of their funerals. I didn’t like funerals anyway and it was too much to go to one of them.

One day when I was perhaps age 32, Mom came to me and said, “Kelly Garrison died.” He was about five or six years younger than me. He had Duchenne MD. I didn’t know him well but I knew of him.

I said, “Well… I’m next.”

She immediately went into an angry tirade laced with, “How can you say that? You don’t know that? You’ve never been one to give up!”

When she wound down, I calmly added, “I’m still next.”

“How can you say that?”

“Because there aren’t any left. Of all the people who had some sort of muscular dystrophy that I knew from school, they are all dead. Kelly was the last one. I could live another 40 years but I’ll still be next because there just aren’t anymore.”

We both tried not to cry. That was about 35 years ago.

Fate robbed me of another chess partner.

When I was in eighth grade, we got a new girl in seventh grade named Heidi. She was in a wheelchair but I didn’t know what was wrong with her. She was extremely shy and quiet. I figured she would eventually warm up the way Rose had. The teachers found out she played chess and so they suggested I try to get her to open up a little bit by challenging her to a game. She played pretty well but she didn’t take care of her queen. I would get some sort of a fork move on her, capture her queen, and after that, she didn’t have a chance. A couple of times I took it a bit easy on her. When she would make a mistake, I would ask, “Are you sure you want to do that?” I would let her take back the move. But only if she made an obvious blunder. If she would get caught in a trap that I set then I would take the win.

One day, Mr. Kohl called me aside. “How have the chess games been going with Heidi?”

“Okay, she’s pretty good except she doesn’t protect her queen.”

“I have a favor to ask you. I need you to let her win now and then.”

I laughed in his face. “You can’t be serious. I will coach her as best I can but I’m not taking a dive. Especially against a girl. I’ve got a reputation to maintain.”

“You will do it.” It wasn’t a threat. He spoke from confidence.

“What makes you think that?”

“Because I’m not telling you to do it as your teacher. I’m asking you as a personal favor to me.”

Well fuck. He had me. Since he put it that way… I was going to do it but the best I could give him at that moment was to say I would think about it.

I didn’t get a chance to play with her for a couple of days. I made up my mind I would go easier on her. She was going to have to win but I was going to just play a mild defense. I might even “accidentally” sacrifice a piece. Then she didn’t show up to school for two weeks. One day, Mr. Kohl called me aside, “Did you ever get a chance to play against Heidi again after we talked?”

“No. She hasn’t been here in days. I was going to go easy on her but I never got the chance.”

He then explained. Heidi had cancer all along. She was terminal. She knew it and all of the teachers knew it but none of us kids. She only came to school to have something to do to live out her days. He told me she had died. I never got a chance to give her a game.

You always think you will have time to do nice things or to apologize. But you can’t be sure.

Dan Moran was in high school with me at Roberts. He had chronic kidney disease. One day we got into a stupid argument over something. I don’t recall what it was. On the way home on the school bus that day I decided to apologize the next day. He didn’t show up the next day. Or the day after that. A week later he was dead at age 16.

People say, “Don’t hold a grudge.”

I rewrote that adage after Dan died. I now say, “Don’t hold a grudge any longer than you can hold your breath. That breath might be your last.”

One more tearjerker for you just to get them all out of the way. This story is going to take a lot of backstory but it’s a backstory I was going to tell you eventually anyway so now is as good of a time as any.

As I will tell in more detail in future episodes, for my sophomore through senior years of high school I went half a day to Roberts School and the other half of the day at my local neighborhood high school Northwest High School. The wheelchair bus from Roberts would pick me up in the morning and drive me to Roberts where I would take a couple of classes that were only offered upstairs at Northwest which was inaccessible. Then after lunch, Mom would pick me up and drive me to Northwest for afternoon classes. As the bus came back through the neighborhood to drop off my friend Mark who lived just around the corner from me, it would stop by Northwest, pick me up, and bring me half a mile home.

The high school at Roberts was a joke. There were only about 20-25 students for the entire high school program. We had only two teachers. Mr. Sam Price taught English, biology, and social studies. Mrs.Harriet Bartlett taught math, bookkeeping, and French. Those teachers tried to teach an entire high school curriculum for all four years of high school. To get all of that in, they divided the day into 12 periods of 30 minutes each. Each class would consist of 2-5 students who sat around a table at the front of the room while the teacher taught. The rest of us sat around the perimeter of the room at desks facing the wall. If you took five courses plus lunch that meant you had 6 of the 30-minute class periods with nothing to do except study and try to stay out of trouble.

Scheduling all that, especially arranging it so that all of my classes were in the morning was quite a challenge. Lunch at Roberts was served in three shifts. Kindergarten through about third grade went first. Grades 4-5 plus the special ed multiply handicapped class (kids with both physical and intellectual disabilities) went second shift. Junior high went third. High school was spread out among all three periods to make the schedule work.

During my sophomore year, Rose and I were the only high school kids who ate in the first lunch period with the little kids. We had a table all to ourselves. We would eat lunch quickly and then convince the second-grade teacher who was the lunch monitor that we had permission to leave early, go back upstairs, and study.

We sort of did have permission but we were expected to go to Mrs. Bartlett’s room because Mr. Price was at lunch himself. We would sneak off to the empty classroom. We weren’t doing anything wrong. Mostly we just sat and did homework or would talk but it was nice to have a quiet place to hang out without having another class going on in the same room. Sometimes we would get to laughing too loud. Bartlett would hear us, come over next door, and angrily order us back to her classroom where we belonged.

When we were there alone together, we finally began developing that friendship that she said she always wanted from me. I learned more about her life story. She was the youngest of nine children in a large Catholic family. Her father had been a firefighter but had died from alcoholism. Her disability was caused by a rare genetic neurological disease called Frederick’s Ataxia – F.A. for short. Two of her older brothers had it. The older one was dead. The other one lived with her and her mom.

She had been able to walk up until about sixth grade. By seventh grade, she had to use a wheelchair. She had been attending Saint Teresa of the Little Flower Catholic School which was just down the street from her house. Upstairs at the school was inaccessible. She would try climbing out of her wheelchair and either climb the stairs holding onto the railing with help from someone or she would get out of the chair and she tried to crawl up the steps while someone carried her chair up. It just didn’t work out. That’s when she transferred to Roberts School halfway through seventh grade and I fell in love with her.

When she came to Roberts, she has only been in a wheelchair for a few months. She was still dealing with the trauma of recognizing what was ahead of her. That’s why she was so withdrawn when she first came to Roberts. Even though she had brothers with the same thing, moving to Roberts made it suddenly real to her. None of the rest of us realized what she was going through back then. All of us had spent many more years or perhaps our entire lives getting adjusted to life with a disability.

Having a boyfriend was the last thing on her mind back then. She confessed her letter to me in seventh grade had been a lie. She never had a boyfriend from her neighborhood. She also somewhat apologized for her snarky conclusion of the letter which concluded, “So what if I am cute?” She said, “I was really nasty to you back then wasn’t I?”

“Yeah, you were. My heart’s still broken. But you’re still cute.”

“Yes, I am. And we’re still going to be just friends.”

That friendship grew even deeper one day when we were sitting alone in Mr. Price’s room after lunch. We were actually studying for a change and not joking around. I was doing geometry and Rose was working on a biology assignment. At Roberts, there was no lab for biology. It was purely a textbook-only course. I was taking biology at Northwest. The difference between the two courses was like night and day. That we had biology lab every other day at Northwest. We dissected an earthworm, a frog, and a fetal pig. That’s one of the reasons I got out of Roberts half a day to go to Northwest – so I could take real science classes.

Anyway, our desks were across the room from each other facing one another. I happened to look up and Rose was just sitting there quietly with tears running down her face.

“What’s wrong?” I asked.

“It’s this stupid biology assignment Price gave us. We have to write a report about our own disability. Price brought in this damned medical reference book.” There was a large book about 4 inches thick that looked like an unabridged dictionary. She gave it an angry shove across the desk. She composed herself a bit and said, “They’ve got less than a full column about F.A. They hardly have anything to say about me. The stuff they say, I’ve seen it in my brothers and I’m living through it. But the thing that got me…” She started crying again… “…was the last sentence. It just says real coldly matter-of-fact, ‘Usually fatal by age 30’” She slammed the book shut and continued to cry.

I knew her oldest brother was dead and the other one was in worse shape than she was. It just didn’t sink in for her until that moment what that meant for her. Or for me either. Terry Johnson, Gene Storms, and Dan Moran were still a year or two from dying. I had never gotten close to Heidi.

We both sat there and just cried for about five minutes. I wanted to go over and hug her but even though I had some use of my arms in those days, I couldn’t reach up. The best I would’ve been able to do is pull up alongside her and invite her to hug me but that wouldn’t have helped. I wasn’t the one who needed comforting. So we just set there across the room from each other and cried. She could see I was crying too. I think that was the best we could do under the circumstances.

After a while, she said, “30 years isn’t enough.”

“No’s, it isn’t.”

She left for the restroom. I wiped my eyes and went over to Mrs. Bartlett’s room.

You will hear much more about Rose in future episodes but let me spoil some of it for you so we don’t end this episode on a total downer. After graduating high school, I occasionally heard from Rose but I didn’t see her again until a school reunion in 1986 when we were each just short of our 30th birthdays. She was happily married to the nephew of one of our classmates. A couple of years later, my cousin Nancy ran into her when they shared a ride on a city wheelchair bus. Rose was taking her newborn baby for a checkup at the doctor.

According to records I found on ancestry websites, Rose Ellen Figley (née Shewman) born September 5, 1955, died October 29, 1993, at the age of 38 years, 1 month, 24 days.

Thirty wasn’t enough. But given the circumstances maybe 38 was.

For my next couple of episodes, I’m going to do something a little different. I’ve mentioned in passing a couple of times that I wrote an award-winning article that was published in the September 1987 issue of Indianapolis Monthly Magazine. The autobiographical piece “The Reunion” is a memoir of many of my experiences at Roberts School that was inspired by an all-school reunion of Roberts alumni that was held in May 1986 on the occasion of the closing of Roberts School. Although I intend to keep the majority of this podcast to be newly written original material, I thought it might be nice to read the story for you. So, next week I will begin by telling you the story of how I wrote the article and I will read about half of it. The following week I will finish the story and talk about what happened afterward.

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