Derick, Jerald H., Jeff K., Ken M., Tom Metz, Shawn Smith, and Dean Tuckerman talk about what it's like to find yourself newly disabled.

Disgaytalk is the online discussion group associated with BENT, where cripgay men talk about the issues that matter to them—funny, serious and everything in between.

From time to time, with the cooperation of the participants, BENT presents an edited version of an exchange we think will interest a wider audience. You'll find older Forums archived.

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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 it.

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 similar feelings?

~Shawn Smith
Canada

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!

~Jerald H.
Texas

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.

~Dean Tuckerman
California

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 myself—if 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.

~Derick
United Kingdom

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 anyway.)

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.

~Shawn

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.

~Derick

I grew up with disabled people—a classmate in elementary school and an aunt, both with post-polio syndrome—who 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 years—a 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 demotion—it's just another personal characteristic.

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.

~Ken M.
Minnesota

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 people here.

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 e-mail me.

~Jeff K.
New York

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 life—you'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 them—you 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 face—and 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.

~Tom Metz
California.

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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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BENT: A Journal of CripGay Voices/November 2005