Jerald H., Jeff K., Ken M., Tom Metz, Shawn Smith, and Dean Tuckerman
talk about what it's like to find yourself newly disabled.
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I am twenty-seven, recently involved
in a bad motorcycle accident that left me paralyzed in my right
leg and suffering from severe and constant pain. Prior to my accident
I was attractive, always on the go, enjoying everything life had
to offer. Now, still recovering, I am trapped in a wheelchair and
I've gained so much weight I look like a patched-up rag doll. I
have no clue what to do from this point on. The things I used to
enjoy are gone, with nothing to replace them. I feel my spirit dying.
Depression, emptiness, anger and total loss have taken over the
fun, outgoing, exciting and deeply caring person I used to be. I
feel like surviving the accident is far worse than having not made
My friends try hard but just can't
grasp what it is I feel. All I want is to wake up one day and be
able to smile and feel no pain, not because I "should"
want to feel better, or because I don't want to worry my friends,
but because I'm truly happy again. I am trying hard to keep going,
but every way I turn another door seems shut. I am trapped in the
prison of my home seven days a week, except to go to physiotherapy
or doctors appointments, or one more insurance company assessment.
I just want a purpose again. Does anyone else on this list have
Hey Shawn, pain is a big part
of my disability too, though in my case it's from a spinal cord
tumor. Having dealt with it for over twenty-two years, I can tell
you that there is hope. My first piece of advice: never take "There
isn't anything more I can do" as an answer from a doctor. There
is always something else to be tried. I suffered needlessly
for decades because my docs refused to give me pain meds. They all
told me I needed them, but didn't want me to get "hooked" on them
at such a young age. And I was too young and insecure to challenge
them. But no more. After years of searching, I found a good pain
management clinic and doctor.
Last year I was put on a low dose
of methadone. It has almost given me my life back. I can sleep through
the night, I can spend more than a few minutes on my feet without
severe pain (I can manage almost two hours at times now!), I've
lost forty-five pounds because I can actually get out and walk in
the park most days, I'm going back to college this fall, and I'm
not in a constantly pissy mood due to high pain levels. It's a miracle
drug as far as I'm concerned.
I'm not saying methadone is the
best option for you (we all react differently to various meds),
but something out there will work for you. It won't be perfect,
but it will be better. So if your doctors aren't helping you, fire
their asses and find one who will! There is no excuse for you to
have to suffer like you are in this day and age.
Some find comfort in spirituality.
If you are inclined in that direction, by all means seek out a faith
that works for you, but as a lifelong atheist, I can also tell you
it is not at all necessary if that's not your thing. You can make
it through this transition just as well without "faith.' Either
way, just follow the path that you feel is best for you and don't
worry about what others may think. And if you ever need some non-faith-based
advice on how to cope with chronic pain and disability, feel free
to drop me a line. I'd be more than happy to help.
Never, ever let someone
make you feel bad because you can't do what they think you should
be able to do. Every disability is different. Just because some
disabled men can "do everything" doesn't mean that you can or even
should. Severe chronic pain is far more disabling than most people
realize. I spent the first ten years of my adult life trying to
prove I could do what anyone else could do (even though I so obviously
couldn't). In the process I did more damage than good to my body
and my self-image. No one knows your abilities and limitations but
you. I'm also attaching some links to organizations [See end of
Forum. -ed.] that you might find helpful in dealing with chronic
pain. They have been very helpful to me.
Anyway, I hope some of this helps.
And if you ever need someone to talk to who has been there, drop
me a line. Best of luck to you!
First of all, Shawn, even though
you feel trapped in your wheelchair right now, imagine life without
it. It is your lifeline. In the medium and long run it will help
you get out and enjoy the world. Yes, although it might sound like
a cliché, you can still enjoy what the world has to offer.
Second, have you tried acupuncture
for the pain? In my experience, it seems to be the best of the "alternative"
healing modalities. If you don't know where to get it, write me
and I will help you find a place.
There is much you have written
about that I can relate to. I have MS, but like you I am also in
constant pain. It's something I've got used to, but it is always
in the background. I describe myself as a mobile blancmange because
of my weight gain from steroid medication. I no longer feel attractive
and would not even fancy myselfif I were able to turn round
quick enough! Becoming disabled has destroyed my confidence and
self-esteem so that I feel I no longer have a gay identity. There
are no easy answers. We all have different coping mechanisms, so
you have to find a way of coping unique to you.
But remember that although your
physical appearance may have altered the inner beauty of Shawn still
remains. You still are attractive. You still have your caring nature.
You now need to capitalize on your inner strength and beauty instead
of relying solely on your outward and visible physical attraction,
as you once did. Of course friends do not appreciate our feelings.
Why should they? When you were able-bodied and asked, "How are you?"
did you really want to know the answer? What was the advice when
a relationship floundered? "Pick yourself up, brush yourself off,
and start all over again."
You do have a choice. Sit in your
wheelchair and feel sorry for yourself or accept your lot and use
your skills to work for change. The majority on this list will share
your pain and anguish. Having "been there," we have had to find
a way to hold on to the belief of empowerment and self-determination.
This is probably not the answer you were seeking, but I won't to
pat you on the head and say, "There there." Far better to use your
anger and channel it constructively for your own benefit.
Sympathy isn't what I'm really
looking for, although it is hard not to want that "pat on the head"
occasionally, although I am unsure how beneficial it truly is. I
think what I needed in posting my first e-mail was just to get things
off my chest. Mostly I decided to post here to see if there were
any groups or activities available for gay men with disabilities.
I am generally good at picking myself up and brushing off hard times
and trivial matters of life, but with this I am at a loss. I don't
know where to start again.
I am working hard at getting my
pain under control, although this seems to be a tough matter, as
my doctor tells me there isn't any support in the Canadian health
care system for someone in my situation (not that I feel unique).
It is this type of stuff that frustrates me and leads me on this
search to find out what things are available for gay men with disabilities.
Take some practical social issues, for example. If gay bars and
other places aren't accessible, then why doesn't someone work to
rectify this inequality? (Not that I think I would go to bars now
Mostly I am trying to make new
friends so I can communicate with those who understand and maybe
have advice. I hope this message doesn't portray any negative feelings
towards your response, as I truly don't feel that way, rather I
am intrigued. Thanks for taking the time.
No way did I think you of being
negative. I merely wanted to emphasize my belief that you are not
alone. I know from experience that within us we have the strength
that is enabling, and this is what you need to find. We all have
self-destruct button, too, but what is depression other than a symptom?
It is the cause that needs attention rather than the symptom.
Your question about access is
a good one. Since becoming disabled I find I am campaigning for
disability rights. Although I am a professional I am now unemployable
so have gone back to university to be a professional student, where
I am a constant thorn in the side of academia on accessibility issues
on campus. Here in the UK there is DAN (Direct Action Network) of
disabled activists. In the past we brought Parliament Square to
a standstill by sitting down in the road, chaining ourselves to
buses, and generally causing mayhem in order to highlight inaccessibility
both in buildings and transport.
There must be something similar
in Canada, and getting involved with like-minded people is one way
to fight depression. You can use your talents to meet your own needs
and maybe those of others as well. So make phone calls to social
services. Get social workers interested in addressing anti-discriminatory/anti-oppressive
practices. Move on to the medical profession. Above all, use the
Internet. It will be exhausting. It will be frustrating. It will
ultimately make you feel better.
I was around at the onset of HIV/AIDS
when combination therapy was not available. I realized that those
who could summon a positive frame of mind survived longer than those
who simply gave up on life. I am therefore suggesting to you, without
being patronizing, that you have that inner strength.
I grew up with disabled peoplea
classmate in elementary school and an aunt, both with post-polio
syndromewho were hardly slowed down by their mobility hardware,
so I never knew that people with disabilities were supposed to be
inherently any less capable than everyone else. (One could describe
either of them as "ball-busters.")
Then, in high school, I connected
with a local summer camp for what we'd now call "developmentally
disabled" kids (C.P., M.R., blind, spina bifida, etc.) and discovered
that they were just as lively and as much fun as the other kids
I'd grown up with. And, as a professional in theatre and dance fields,
I've found those D.D. adults to have no inherent "handicaps" in
learning what I was teaching them. I even did a dance class for
my blind audience members before a performance of the musical "Fiddler
on the Roof," so they could directly understand the dance numbers
in the show.
When I started really working
with people with disabilities twenty-one years ago, my first total-immersion
experience was with a thirty-year-old quadriplegic (from a car crash).
We went to a disability conference two days after meeting, and then
out to Los Angeles for two weeks of occassionally inebriated sightseeing.
Another long-time friend I met soon after that is a paraplegic architect
who runs two marathons a year. Both of these guys earn a very good
living and typify the "super-crip" sort, like the guys in the movie
"Murderball," but with cleaner language and better taste!
Meanwhile, I acquired several
disabilities of my own over the yearsa broken vertebra around
age eight, which has given me bouts of paralysis every so often,
a hand injury that caused the loss of about a third of its function,
and now uncontrollable diabetes with accompanying neuropathic pain
and sensory decay. At some point, I started thinking of myself as
one of "us" instead of all of you as "them." So, to me, having a
disability is not an automatic demotionit's just another personal
Both of my "supercrip" friends
are far more successful financially and personally than I am, and
so were my elementary-school classmate and my aunt. They also acquired
whatever personal relationships they wanted, especially after they
became disabled. My quad friend even remarked, in telling me his
story, that if he hadn't become disabled at seventeen, he might
still be pumping gas as an overgrown teenager instead of having
to become a successful manager.
So what's my point? I guess it's
that you are what you are, not what you were, and you can take your
lemon and make lemonade, or you can take over the whole damn orchard.
Our society offers only a few resources. The rest is up to each
of us personally.
Hi Sean. When you have an accident
you realize that you will have to adapt the way you did some of
the things you did before. Four years ago I suffered a back injury.
Even though I am not in a wheelchair I have to use forearm crutches
and have had two surgeries so far. I have been through what you
are going through, especially the sensation of doors closing. At
times it can be rough, but after a while you realize that you are
not alone. Stick with this group. You'll find a lot of supportive
You are lucky to have friends
locally, something I don't have. True, they might not understand
everything you're going through, but at least you have a support
network and people that care. As far as weight gain is concerned,
you might gain weight right now but you can lose it again. I gained
weight in the first few years and hated the way I looked. I have
managed to loose fifteen pounds by watching what I eat. If you find
yourself eating more because of depression you need to seek help
for that. Post-accident depression is inevitable and nothing to
be ashamed of.
Have you been referred to a pain
management specialist? I know that in Canada things are different
than here in the states, but there may be options you'll need to
fight for. There is no reason for you to make yourself a prisoner
in your own home. If you want to get out and do something arrange
to go out and do it. I am sure that you have public handicapped
transit there. Fill out an application so that you can arrange to
schedule trips to go out to the mall or other accessible places.
Staying cooped up is going to make you feel worse. You need to remember
that, inside, you are the same person you were before your accident.
Do not let your disability take
over your life. You can control your destiny. There will be ups
and downs but you can do it. if you ever need to talk you can always
Shawn, I'm right there with you.
I have felt many of the things you described, and continue to feel
them after twenty-four years of disability. It's over half my lifeyou'd
think that at some point I would realize that I have a new baseline
and would stop comparing myself to the person I was before. I have
a slow onset chronic inflammatory demyelinating polyneuropathy,
like a very slow version of ALS.
The winter before its onset I
was jogging regularly and pausing during my runs to help push cars
out of snowdrifts. Then there was a period when I could barely walk.
Now I've recovered some function, but I'm losing it again due to
aging and a fatigue process similar to post-polio. Although it sometimes
seems I never really adjusted my expectations of myself according
to my post-disability abilities, in fact, on some level I guess
I really have. There are simply so many things I can no longer do.
Early on I would get so angry at my hands for not working (like
when I was trying to sew on a button or fix something) that I would
literally bite them out of rage. I've done it recently, too, but
less often nowadays.
The good news is that there is
always more to learn, and this is where you have the whole world
in front of you. And the funny thing, the big joke, is that there
are aspects of the human experience that you will learn more about
in this life than your friends could ever dream of. They won't really
understand, and you can't explain it to them, but you will know.
Don't feel too superior, though, because they are learning things
you will never know. Keep in touch with themyou need to learn
from each other.
It's good to develop friendships
with disabled people, too. You will find that some disabled people
avoid you because they don't want to be seen in your company. But
if you want easy familiarity with the issues you faceand some
morbid humor!disabled people are the best. That said, absolutely
every disabled person's experience is different.
It's helpful to have a spiritual
practice of some kind. This is another area where you are on an
equal footing (so to speak!) with any person on this planet.
Hang in there. Stay in touch here.
WHERE TO TURN FOR INFORMATION
Chronic Pain Canada: http://www.chronicpaincanada.org/index.htm
Directory of Canadian Pain Clinics: http://www.chronicpaincanada.org/nacpac04c.htm
The American Pain Foundation: http://www.painfoundation.org/
The American Chronic Pain Association: http://www.theacpa.org/
Here's a GREAT online support group with
forum and chat room, a terrific source of info and support, and
GLBT friendly, to boot: http://brain.hastypastry.net/forums/forumdisplay.php?s=&daysprune=-1&f=111.
Their forum link is: http://brain.hastypastry.net/forums/index.php.
They will soon have a GLBT forum as well
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