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My (First) Wheelchair
Written by Phil on Monday, September 14, 2009
I chose this topic for my first post on transabled.org (friendly invited by Sean) because it is comparably easy for me to write about it. It doesn’t concern my struggle with BIID deep in my heart, but it shows how I deal or not deal with it. And it fits best in here, I think.
For years I had dreamt about wheeling. Two or three times I could try it out, in a hospital or so, just for some seconds, and twice at an information stand on a sports event where they informed people about wheelchair sports – for 10 or 15 minutes, over an obstacle course, with some support. And years ago somebody lent me his handbike which I could use for an hour or so.
And then I attended the 1st Frankfurt BIID Conference (March 2009). Shortly before I had thought I had found something like a mental balance, a way to calm myself. I was comparably calm, not very lively, but I could stand this BIID, the desire was low (other things were low, too). On the conference there were so many so friendly and “normal” people with BIID. It was like coming home to a place where being me is just the normal thing, a home I hadn’t known that existed.
It was a mixture of relief and relaxation and of euphoria I was in. All these experts were amazed how normal we are. Nobody had a real explanation. And there were all these stories about happy amputees (no happy paraplegics, sorry). One evening a friend lent me his wheelchair and together with a “successful wannabe” and a group of nice madmen and their companions or spouses we looked for a place to eat. It turned out that the fast food restaurant in the main station was the only place available. I wheeled through the streets, the station, the restaurant. People looked, but not much. I guess I beamed with happiness, but tried not to show it too much. I felt lighthearted, funny, happy and a bit silly.
Then I had to go to the toilet. And this was in the basement, accessible only via stairs. What to do? Well, I was embarrassed, but I faked. I wheeled to the staircase, hold myself at the handrail and walked down very slowly, seemingly uncertain on my legs. The same up again. I thought: What if I really had only thigh stumps? Would I walk down on my hands and butt? Toilets are not really a place where I would like to “handwalk”. Yet, I had no other chance. This is a country with buildings which are hundreds of years old. One simply can’t make them all wheelchair accessible.
But this was soon forgotten.
On the last day, a lot of nice people gathered after the official conference again. And again, this friend lent me his wheelchair, so we were two in wheelchairs and one or two on crutches, plus some on both feet. It was not night, but day, and I know some people in Frankfurt and the near. But I felt no fear at all. I had no story what to tell them. I just was careless. We went/wheeled into shops, restaurants, in the street, I went down an escalator (aided by the owner of the wheelchair) and used a lift.
I came back home on Sunday, full of energy and acceptance of myself. I told my partner, and he was a bit shocked, but accepting. On Monday I looked for wheelchairs in ebay, found one, and after two hours it was mine. It came on Wednesday, in a huge box. It is a Sopur Allround 615 in just the right size for me, black, looks good, I think, and it feels good to use it, it runs smooth, is in a good state and cost 411 Euros. Coincidence? Fate?
Now I must explain something. We are living in an old house without lift in the 4th floor. I carried the big box up all these stairs and stored it in the attic. And I already had “decided” to use it openly. With a cover story like: I have problems with my ankles/knees and the doctor said I should try to give them a break, so from time to time I use the wheelchair – which is fun etc.
My partner was shocked again when he saw the wheelchair which I used (at times, not often, and when he was around only as a desk chair) in our apartment. I do understand him. He tried his best to be accepting. And my courage shrank down. Who would believe this cover story? Would I be able to lie – I am a bad liar. And I don’t even want to lie.
So the wheelchair was used only once openly in the city, but in a quarter of town where only few people know me. And then I used it sometimes in the night, really late, once directly from home (sweating because of fear to be caught and of the summer night – and of the effort it takes to wheel around), the other times I carried it to a park, in two big bags (the frame in one, the wheels in the other), reassembled it there and wheeled for an hour or two, secretly. Every time I thought: This takes more energy than I had thought – do I really want to be “confined to” the wheelchair most of my life? Don’t I want to get more easily where I want to go? Wasn’t I happy in a way to stand up and walk again?
Sean wrote about “belonging”. Yes, I want to belong – to the world of the two-legged, “normal” people. Do I want to belong – or do I want to be?
That’s all what resulted from my oh so courageous “decision” to wheel openly and to show myself in a wheelchair. So much about decisions…
But I have excuses, maybe more than excuses. First of all, if I want to get in and out, I have to walk down and up 4 storeys. Second, when going to customers or so I don’t want to appear in a wheelchair (and I wouldn’t be able to get there in many cases). Third, people would ask my partner, and I don’t want to oblige him to lie on my behalf. Fourth, “pretending” (I prefer “trying out”) is a valve for the moment, reduces the pressure for some time, but in the long run it fuels the desire. After wheeling, I get a short “high”, but then I constantly think about the wheelchair and about amputations for quite a time. Sometimes it is necessary, but I think as long as there is no option for me (no surgeon and not enough courage of myself to decide for a life with two short thigh stumps) it is better for me not to wheel too much. And fifth, now I have my legs, and I should and want to make the best out of them, so I try to use them and enjoy what I can do with them, walking and bicycling and jumping and more often dancing, too. Maybe that is just fighting against me myself – but hey, my legs are a part of myself up to now, too, like the desire to have only short stumps of them – both on different levels of my being.
Tags: BIID, Wheelchair
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15 Comments
I\’ve never heard an account where someone says,\”So I realized today that I need to be paralyzed and went out and bought a wheelchair.\” (Of course we know buying one new in one day is an impossibility…)
No one I know has made that decision instantly, but as Chloe said comes to it slowly over time.
3 On 14 September, 2009, Phil said:
Hi Chloe, thanks for your nice words. Yes, complexity. Life is more complex than my brain seems to be…
Hi Becs, now I could write about the “slippery slope” theme, blahblahblah, … (By the way, I don’t desire to be paralysed, but to have two short thigh stumps. I feel the line in my legs.) At the moment, I have rather decided not to use the wheelchair very often, because I would dig me only deeper into desperation. Reality is, I have two legs, live in an apartment which is not at all wheelchair accessible and still can enjoy a bicycle ride or a walk. So I try to concentrate on these.
I’m afraid I repeat myself – not only here… The same old thoughts again and again…
Phil
Thank you for sharing with us. What you said near the end about not being sure if wheeling is helpful – I’m with you on that. When I’m in my chair I love it, I’m myself and it’s great but the day before I go out in my chair it’s all I can think about and for a week after it’s still all I can think about. I often wonder if this would all go away if I sold my chair and tried to forget about it but I know that it won’t ever go away. Last time I sold my chair I just bought another one less than a year later, and while I didn’t have a wheelchair it was worse because I didn’t even have the possibility of planning a trip for a months time.
5 On 15 September, 2009, Sean said:
For me, wheeling is bitter-sweet. It reminds me that I’m not paralysed. But using the chair full time is the only way I have to survive the BIID. I long ago stopped fighting my need, and let go.
I’m with Sean. I have zero motivation to fight against my BIID. I am much more comfortable simply accepting it.
Using my wheelchair most of the time brings a massive sense of well being.
7 On 15 September, 2009, Phil said:
Dear Sean, dear Chloe,
is there no other way than fighting it or following it? I am trying to accept it as it is, not only to accept BIID, but also my body – accept everything as it is.
Why? Because I see no way that is safe enough to get the form of my body I desire, and I can’t (yet) say good-bye to all the things I can do with two legs. And because I still hope that another way can be found.
This “massive sense of well-being” – can’t it be acquired on other ways, too, at least to some extent and for some time?
For example by sex, love, sports, body work, “flow” (http://en.wikipedia.org/wiki/Flow_(psychology)), dancing, meditation, thinking nothing for some time, relaxation, listening to good music, etc. etc.?
Wheeling is bittersweet, yes. For me it fuels BIID. I get stuck – in the role I play (including some kind of lying which I don’t want), in the wheelchair, and in BIID. On the other hand it gives a certain “high” feeling.
The worst is that I constantly know that it is not real. The legs are there. Outside of the wheelchair there are times (short times, I admit) when I really just forget about BIID, wheelchairs and all that.
Plus: things are easier and more comfortable. So it’s a balance of pros and cons. Of course this is different for everybody.
First of all, thank you, Sean, and everyone who posts here, for making and creating such an articulate and thoughtful place for all this complexity…I read the site a *lot* (in part to wade through my own thoughts and feelings about transabledness and ‘disability’ in general), and I think it’s a veritable goldmine(in the nicest possible way, of course)!
In regards to Phil’s thoughts…I think as more and more is found out about BIID, and it’s coat of many colours, it will be fascinating to see how the subtleties of it all become increasingly understood. There seems to be such a range of intensity from person to person, as to how BIID is dealt with (or not dealt with). It will be beyond interesting to see how it manifests with relation to brain physiology, as well as personality, character traits, personal experiences etc etc. Another good old fashioned (if a little reductionist) nature versus nuture debate!
9 On 16 September, 2009, Sean said:
Phil, It might be possible to acquire the “massive sense of well-being” in the way you describe. I don’t think it is possible for me. Samantha on the Fighting-it list described it well, saying her life was not unenjoyable before her amputation, but there’s now nothing holding her back from living fully.
@Phil: I have a sense of deja vu with BIID. I tried long and hard to accept my genitalia the way it used to be. However, I have a much improved sense of well being after surgery to conform with my self image. There is no incentive for me to put myself through such a long drawn out process again with BIID. I learn from experience.
11 On 17 January, 2010, Phil said:
Hi Chloe, I just re-read your comment.
And I had to think about the parallel of BIID and being gay.
How long have I wavered back and forth, hesitated and desired before I finally was picked like ripe fruit by my first boyfriend…
And I know that I lost a lot of time, I know how right it felt, and I couldn’t even understand what I had been thinking and fearing before.
Maybe it is the same with BIID. But as long as I waver, I can’t fall in hopelessness, which I fear I would do, because there is no way to have my body altered in the way I need it to be.
I heard that of the few “successful DAK wannabes” some have reported a lot not only about the relief, but also about the big problems they have got. Not that they regret it, but the price is very high.
The price of living a gay life was low, very low. In fact, life became gay, happy, free, with a wide horizon and nearly no downsides.
I doubt living a life with no legs would be as merely good as living a gay life.
Were there downsides of your surgery?
I assume this question has been asked before, but I can ill afford to get fitted for a chair, so I have no idea what size to get. Any advice from anyone? For the record, I’m about 6′ 2″ (185 cm) and about 220 lbs (100 kg) … if that helps. Thanks in advance for any advice.
13 On 18 January, 2010, Phil said:
Hi Bryan,
your height and weight are not so important.
You should measure:
- how broad your buttom is, so that you know how broad the seat has to be: just sit down on a chair, paper or desk and mark where your back side ends at the right and left and measure it;
- how long is it from your back to where your knees bend,
- how long is it from your thighs to the bottom of your feet.
I guess these are the most important measurements.
There is a lot of information about wheelchair adjustment. Here you see most measurements: http://www.mobilityworks.com/pdf/wheelchair_measurements.pdf.
If you look here, you can see which measurements have to be taken and considered:
http://www.spinlife.com/Invacare-A-4-Titanium-Adjustable-Rigid-Wheelchair/spec.cfm?productID=72088
I think it is like buying shoes. Not only cm or inches will predict whether they fit comfortably or not.
But I am not an expert on this field. Maybe Sean can write a “beginner’s guide to buying and using a wheelchair”?
Hi Phil,
The downsides of my surgery were that it was expensive, and the year long recovery was painful and bloody. My GP thinks that it might be a contributing factor, besides the minor SCI, to my incontinence issues. However, that is not a downside for me.
It is great that you have found little downside in being gay. This is not true for everyone. An acquaintance of mine is the director of the local homeless youth outreach program. More than 50% of homeless youth here are gay or transgendered. It is because their parents kick them out of the house when they find out. Such parents generally seem to be from that cross-section of society that espouses their so called “family values”. HA! I’m a bit sensitive about this because my partner was kicked out by her parents when she was sixteen, and spent several years homeless.
People who are gay, transgendered or intersexed do in fact still get beaten up, and even killed, simply for being who they are. The recent debate about reinstituting the death penalty for homosexual acts in Uganda is…
The point is that no severity of downsides can actually change who you are. If BIID carried the death penalty, it might make me a little more careful but it would do nothing to take away the BIID.
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1 On 14 September, 2009, Chloe said:
Thank you for such honesty with your thoughts, feelings and experiences, Phil. You underscore that what we face is complex, and there are no easy solutions. We each have to dig deep to find the right path for ourselves. Sometimes we have to do experiments, not knowing in advance exactly how we will feel about something such as a wheelchair.