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The Three Musketeer's at TRC

Name: Glenn J.
Email: Seescokeed@aol.com
Date: 02 May 1999
Time: 13:32:21
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I have Reflex Sympathetic Dystrophy Syndrome, but everyone just calls it RSD. If you've never heard of it, you're among the vast majority of folks, docs and nurses included, that have never heard of it before. If you do know someone who has this horrid, chronic, intractable pain and degenerative nerve disorder, please send them my deepest sympathies, for it is like a kind of death.

Those who must live with or around an RSD patient who's got it as badly as I do (pain levels vary from patient to patient, depending upon how soon they were diagnosed and, even more importantly, how soon treatment and physical therapy begins) are almost affected by this terrible affliction as much as the patient himself is. If you happen to love someone with RSD, it's especially cruel that we can't stop the pain, no matter how many meds that person I takes. Everyone involved, including the doctors, are simply so frustrated by the lack of pain relief they can achieve for the patient, they almost become hostile towards any chronic pain patient they see coming into their offices or treatment rooms. There's simply nothing anyone can do for us but continue prescribing our pain meds every month, and this draws unwanted attention by institutions set up to track down illegal narcotics, NOT those of us with chronically ill and well documented cases of diseases of chronic pain and the unique problems we must face on a daily basis.

I'm a writer, it's about all I can do any more these days. My wife divorced me, of course, but that was nothing compared to having my only son taken from me. One minute he was mine to have and love and take care of and play with him when his friends weren't around and show him how to make paper airplanes, play different toys that boys his age love to play with (cause I remember how much fun it was when I played with them) and teach him how to make things with them, especially Leggo's, which I never really played with, and Hot Wheels, something I loved to play with when I was his age.

I spent ten days with a guy who had cerebral palsy, and at first I was merely supposed to make sure he got to the nurses aid station so we could take our afternoon meds at the same time, but there were times when his batteries needed recharging so much that his pace was extremely slow, while I had to limp from one place to sit to another as quickly as I could. They didn't have a wheelchair there for me; they were all being used for other disabled folks and I didn't have one of my own at that time.

My story is a remarkable tale of discovery and joy, along with heartache and intense concern about my soon-to-be-friend. He with his body that refused to obey even the simplest of commands and the cruel way in which his body was twisted. He did have the one good arm, and I found out one time when I thought he was trying to tell me he needed to use the bathroom, just how strong an arm it really was, and just how strong a person he was on the inside. It took me over three days to finally figure it out. His mind and sense of humor and sharpness of wit were all perfectly intact; it was his outer appearance that had me fooled. But, he never wanted to tell me this; he was waiting for me to figure it out on my own because, if I never did, I was just another guy who doesn't look past the incapacitated body and into the intelligent eyes on his face.

Talking was something he would continually try to do, and just before my time was up at the TRC (Tennessee Rehabilitation Center), I became able to understand what he was trying to say. The same day I realized there was definitely someone at home inside him, I went and made a cardboard square and cut out little squares of all the letters of the alphabet on them and the numbers zero through ten just after the letter 'z', so he could point to the letters and numbers and we could have conversations, albeit very slow ones, but intelligent conversations nonetheless.

When I met up with him at our usual place in line for breakfast with another guy in a wheelchair who'd been paralyzed by an accidental shooting at a friend’s house, I'd get my own plate and his, too, and he would already be at a table for the three of us, the three Musketeer's.

During one breakfast, I took out my little cardboard square with the letters of the alphabet and numbers on it, and very proudly gave it to him and told him about my plan for our conversations. It took a heck of a lot longer than you'd think it would to make that little square of cardboard with the letters and numbers on them, and I was well pleased with it's neat appearance and carefully glued little squares when I presented it to him.

He acted like that cat that got the family parakeet. He took it and smiled his sideways smile I'd come to enjoy very much, as he went to the right of the inside of his wheelchair and pulled out a thick piece of paper with all the letters and numbers almost exactly the way I'd done it, though it was done using a method of early facsimile called 'ditto', if you'll recall.

I just stared at it, then over at the one I had in my hand and back at the one that he obviously had many copies of, then back over to his face, over to our other friends' face that was smiling from ear to ear, and I finally let it out all at once.

"You mean you've had that all along? All the times we spent together trying to have conversations with you tracing one letter at a time with your other hand on your thigh until I finally understood what you were saying, and you've had this all that time?"

He was laughing so much I thought he'd never quit. I went to take back my hand-made one, but he pulled it out of my grasp and put it where he'd brought out his real one, still laughing.

Every time we'd see one another, he'd start laughing. This went on for almost two days straight. He knew I wasn't put out with him at all; he knew I appreciated his little joke on me very much, and I would laugh with him until people were asking us what was so funny. It took too long to explain, just saying that it was a private joke was much easier. Besides, it protected me from another bout of ribbing and smiling and laughing at me again. And that's only the beginning of our three Musketeer's time we spent at the TRC.

Our other friend had been rendered paralyzed by an accidental shooting at a friend’s house. A hand gun owned by his friend’s father discharged, hitting his spine in the lower abdomen, rendering his hips and urination useless compared to before he was shot, and, of course, both his legs were totally nonfunctional and were actually tied together at the knees most of the time; he could get off of his wheelchair and onto the commode by himself, and I'm sure that was very much a relief for him -- in more ways than one.

I'm not making jokes about either of them that they themselves wouldn't laugh about with me, for his sense of humor was just as good or better than your average bear. Again, that was not comparing him to the real animal bear; it's just a phrase we used from watching cartoons when we were all kids and laughing through every episode of Yogi the Bear and his sidekick Boo Boo Bear. That's how I see myself when I think about the too brief of time we spent together: their sidekick. I relished the role; they were both outstanding human beings, and, if everyone were like the two of them, there would be no wars, no hunger, no poverty, no greed, no jealousy, etc.

At the arts and crafts center, we discovered that they had model aircraft there for us to buy and put together. That seemed like a good idea to me and the other guy who'd been shot.

(Both of us have been shot at close range, his in the spine, mine through the right foot at the hands of my own brother -- that's how I contracted this horrid RSD, from thirteen bullet fragments, or shrapnel back in 1974, when I was thirteen years old. I wouldn't be surprised if the day I was shot was the thirteenth of July.)

We purchased two models while I allowed my other friend with cerebral palsy to determine which way the model would be built (there were three different versions of how it could be made). There were three different types of decals I could apply to it, and I let him decide which one. He picked the Russian decals because of the type of aircraft I was building, a Soviet MiG 29 Fulcrum. There were also several types of paint jobs for the model, and I allowed him to choose which one. He picked the hardest one, and had a good laugh at it while I proceeded to finish the job within twenty to thirty minutes before his very eyes. He was thrilled to death with it after it was all done and finished and dried and ready for display.

At this point, my time there was only about two and a half days or something very close to that. After I had finished the paint job he'd picked out for the plane, he was trying to tell me something. We tried first with the tracing of letters on his leg, letter by letter. I mentioned using the alphabet board, but he was adamant about telling me himself, trying his best without the use of the board. It was going to either be by him tracing out the letters himself one by one until I understood, or until I could finally understand what he was trying to tell me by talking to me himself. I tried and tried, and every guess was wrong. He was becoming irritated but not at me. I hesitate to speculate as to why he was becoming so irritated. It may be because he was so frustrated about his inability to talk, or he may have actually been irritated with me for not understanding what he was trying to tell me.

So, I just said, "Listen, let's just start all over again with you tracing out each letter on your leg, while I write that letter down and have you confirm either yes or no as to which is correct." He agreed.

So we wouldn't have to go through all this again, he did it slowly and methodically as I wrote what I thought each letter was. I got them all correct, and before it was even finished, I understood what he was trying to tell me. It almost made me choke up, my eyes were trying to well up with tears, but I held them back. I may have looked away from him for just a moment and dabbed at the corners of my eyes really quick-like so he wouldn't notice it, as if trying to remove something from my eyes.

I'd already stopped trying to write down the letters, I knew what he wanted, and it touched me deep down inside, a moment I'll never forget. He wanted me to sign it. He wanted it, and he wanted me to sign it. He, of course, could never achieve something I found so easy to do. I made up my mind right then and there, that I'd buy another MiG 29 Fulcrum and make it to his exact specifications so I could have one to match his.

I told him this, and he did cry and that made us both cry for a moment.

I found the only place on the aircraft that I could sign, and that was underneath each wing. I wrote my first name, using the leftover paint from the aircraft's camouflage light and dark gray color scheme he'd chosen under the left wing and then my last name under the right wing.

I was trying very hard not to cry when my now ex-wife came to pick me up. Both of my wheelchair friends were there to see me off, and the last thing I remember seeing is the nurses trying to wheel my CP friend into where the people who need round-the- clock nursing care, like him, are housed. She went to grab his model I'd built for him and given to him, for he'd brought it with him to show me he was taking very good care of it.

He became extremely irritated when they tried to take that model aircraft from him. So, they said, "Okay, okay, you can have your little airplane."

I hated the way she talked to him. I hated the way they treated him.

That man had more honor and inner strength and resolve in his little pinky finger than the whole nursing staff had combined.. He deserves respect and dignity at all costs.

Copyright © 1999 Glenn J. All rights reserved.

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