SOME LESSONS FROM THE PAST YEAR

by T.J. Boothroyd

 

This past year I thought a lot about something we don't hear discussed much, peer support. Although it is a common topic at my monthly Spinal Cord Injury meetings, I had never before taken a serious look at how it plays out in my own life.

Last January I was going through tough times at work. When a manager referred to me as a cripple, all hell broke loose. The thing is I wasn't the one to hear it directly, but Human Resources decided that I needed to know. A couple of days of rough meetings about it had worn me down. I was feeling like crap, pounded by migraines like I had never experienced before. After one brutally contentious meeting I left work for home and headed for a nap, the best stress reliever I know.

Afterwards, rolling out of the bathroom in my wheelchair, I caught sight of my reflection in the mirror. Something was wrong, very wrong. I could see it in my eyes. I rolled down to my friend Virginia's house, which is connected to mine by a bridge between our decks. When I got there I could barely speak.

In the emergency room, with Virginia and my friend Jeremy at my side, I learned that I'd had my seventh stroke in a matter of ten hours. After ten days in the hospital I knew I was screwed, but that was only the beginning. What followed was four weeks in a nursing home. There I was, my life changing again: back to rehab, back to physical therapy, speech therapy, occupational therapy—all those things I thought were behind me. How wrong I was.

From January to September I had twenty-six hospital stays, eight smaller strokes, and more changes in my medications than I could imagine. When I wrapped up the month of September with a pacemaker, I could think of only one response: "I am way too young for this."

Once again I had to lean on my friends for the simplest of tasks, from help getting up in the morning to housekeeping, shopping, and just day-to-day survival. My independence was shaken to the core, the independence that at times seemed like all I had.

Depression, terrible depression, moved in for a long stay. I keep a meticulous record of all the changes that happen in my life. Living without a significant other to help me keep track, I really don't have much of a choice. By the time October arrived, I finally started feeling like myself again, with the help of my new pacemaker.

One night my friend Jeremy (pictured with me, above) came over, just to hang out. We talked about the rough year that we'd both endured. When I turned to my favorite straight friend and tried to thank him for all that he had done for me, he started to laugh. "What I've done for you? Come on, where would I have been without you?"

He had been through a difficult separation and ended up sleeping on my couch for two months. I had talked him out of renting an apartment and into trying to find a place to buy. He ended up with a great little condo. We talked about our ups and downs, the friends that were here for me (the friends that weren't) and what I had done for my friends in the past year alone.

Our talk brought me to the realization that my support system works both ways. Simply because I need help from time to time doesn't mean the scales don't tip the other way. I have been and continue to be a rock for my friends when they need someone to talk to in the middle of the night, someone they can lean on.

While it's true that right now I do not have that one special person all my own, someone I can lean on when I get scared of everything I have to face, I do have remarkable people in my life, people who stand by me because they want to. My private family. My system that works. Thanks guys, thanks to all of you.

POSTSCRIPT: 12/29/03

There comes a time that many of us must face and I am facing it now. With still no word after a year's wait for social security, an impossible waiting list for assisted housing, private insurance coverage with co-pays that I can no longer afford, and a state that offers little or no assistance, it looks like I'll be going to a nursing home,

If I had a drug problem, a drinking problem, or psychological problems there would be help for me. What a pity I kept my life together. My friends have tried, I have tried, but, it comes time to face reality. The reality is I cannot survive alone.

I visited the nursing home. It is not the worst and it is not the best. I have asked about Internet access, my link with the world, but they haven't made a decision yet. So I sit here, the last days in my home, the home I worked so hard for, knowing that it will no longer be mine. I'm afraid, but at least I will be able to sleep without worrying about what comes next.

I know the cost of maintaining me in a facility vs. the cost of helping me stay at home. Where is that help, and how did I slip through the cracks?

A year ago I got up every morning, got into my wheelchair and headed off for work. Like millions of other Americans I was proud of my job.

What happened to our government? What happened to the American dream that my parents came to this country for? I am still yearning to breathe free.

©2004 T.J. Boothroyd


Don't wait.
Let us know what you think of this BENT feature.

.

T. J. Boothroyd has been a C7 neuro para for the last six years. His last piece for BENT was Police Report.


.

BENT: A Journal of CripGay Voices/January 2004