LESSONS FROM THE PAST YEAR
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.
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.
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.
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 therapyall those things
I thought were behind me. How wrong I was.
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.
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.
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?"
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.
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.
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.
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,
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.
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.
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?
ago I got up every morning, got into my wheelchair and headed
off for work. Like millions of other Americans I was proud of
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
Let us know what you
think of this BENT feature.
J. Boothroyd has been a C7 neuro para
for the last six years. His last piece for BENT was Police