Blog > Thoughts > Other's Thoughts > Xavier's Thoughts > Choose Life
Choose Life
Written by Xavier on Wednesday, December 28, 2011
It’s the holiday season and most of us are busy with friends, family and office parties. It’s a stressful time of year that can make having BIID that much more stressful. But it’s also a time of year to reconnect with those you care about.
Most of us know what it’s like to be surrounded by your friends, family and coworkers and yet feel totally isolated, totally alone. It’s as though no one truly knows the real you kept buried deep inside. No one could possible understand. It’s hard and it hurts. This can be especially true during a time when we’re told we’re supposed to be happy. Please know that you are not alone, you are not crazy or undeserving of love.
Something my therapist said during a session a while back is still ringing my head. She said that I was choosing life, to face the criticisms of others and untold hardships over death and (permanent) disability. She’s absolutely correct. And I want to encourage those of you reading this to choose life. Let those you love and care about see the real you, if even just a tiny part of you. I know it’s scary, it’s not easy being different, but the rewards are worth it. You don’t need to go through this by yourself.
The new year, twenty-twelve is almost upon us (and the end of the world, haha). Let’s make it count. Make a new years resolution to embrace life, accept who you are and tell just one person about BIID if you haven’t already and if you have, tell more people. The first time I talked to my friends was at a new years event where I showed up wearing a cam walker. The more awareness there is, the more of us that speak up, the better. My own resolution, since everyone already knows, is to advocate for everyone struggling with a disability. Together we can make the world a better place.
To all the people here that have supported me, the researchers who are working to help us, my friends who have encouraged me, my fiance who’s put up with me, my therapist who’s advocated for me, and my family, who’s accepted and supported me my entire life, I want to say thank you. No gift I can give would express how much you mean to me, I couldn’t do this without you.
Happy Holidays, I wish you all the best in the coming year,
–Xavier
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16 Comments
@TJ: Congratulations for coming to grips with this monster. I fully understand the flip-flop between DAK and Para- it’s one of the things I used to experience. Is it better to have them gone or just to have them imperceptible? Are bilateral prostheses as good as numb legs? I tend much more to desire paraplegia than bilateral amputations, though. The terrible nagging and obsession doesn’t ever go away.
The T6a looks like a really nice chair- congratulations on getting a “real” wheelchair for your first wheeling experiences. I started with one of those clunky hospital tanks many years ago and they’re awful.
Happy new life in the new year!
@Mark: Thanks! Happy new year to you, too!
When I’m in the DAK-phase of my BIID I don’t even want prosthesis. I just want my legs gone and I need to be completely reliant on a wheelchair to get around. I’m not sure how to say it other than I think prosthesis would be too “enabling”. The choice you set up there of numb legs vs prosthesis isn’t really a valid choice for me. It’s more like numb legs vs no legs. And that choice varies all the time, even several times a day. All day today my brain has been saying “DAK DAK DAK!” When I let my imagination just run with it I see myself in my wheelchair with my thighs ending two inches above my kneecaps.
Then on lighter days when the BIID and transabled thoughts aren’t as strong, I simply want to be a para. Once I get my wheelchair, I can finally gradually begin to live like a para. I’m hoping that will bring some clarity, since right now I don’t have anything to go on. Will living my life as a 4-limbed para be good enough that the constant mental nagging and torment could be tamped down to where I’m not constantly distracted by the need? I don’t know. I suspect that like you I’ll always have a nagging obsession to be a DAK, but time will tell. I hope.
I did months and months of research on wheelchairs before I narrowed my choice down to the Invacare T6/T7 line and a few TiLite models. I got a nice holiday bonus from my work the day after I found a wheelchair exactly in my specs (believe me, I measured myself many times) on eBay. I’m now refreshing the UPS tracking page constantly in anticipation. Having been in the hospital a few years ago for a kidney biopsy, I know how awful those heavy tanks can be. Wheeling around the hospital in one for an hour both enhanced the desire to use a wheelchair full time AND I knew that if I ever was going to go for it, I couldn’t use one of those clunkers.
A slightly belated welcome to (commenting on) transabled.org, TJ.
I’m glad you’ve made the decision to “come out” and buy a wheelchair. It sounds incredibly fun, and I can’t say I’m not jealous.
From your description, it seems like paraplegia is a sort of secondary need, to being a DAK? Do you have a clear preference of one over another? If you had a choice between achieving either one of the impairments, which would you choose?
Choosing a wheelchair sounds really awesome. Okay, I admit it, I’m totally jealous. Although my desired impairment doesn’t require or include the use of a chair, it would still satisfy part of my BIID, and would be fun besides.
@Xavier: About that part about coming out to someone in the New Year….gosh, it’s scary even thinking about it. As someone with parents who would be totally, fully, entirely against that sort of thing, I’m freaked. But I will definitely try, because I know if I can manage to do that, I can do anything. (Well, I still probably won’t be telepathic or have powers of invisibility. But that’s okay.)
If I manage to show someone in real life even part of the real me before the world “ends,” I will be happy.
Xavier, and everyone else here , thank you. You’ve helped immensely, because I thought I was alone. I’m not.
All the best!
-Shadow
@TJ: I guess the big no-no about BiAK for me is the loss of “body shape”. I don’t want to lose my (anthropomorphism?). Just looks totally wrong to me, so if I were to become a BiAK, the prosthetics would have to be there whether I used them or not- and I’d still use a wheelchair. Besides that, I like shoes too much to not have feet!
The wheelchair may prove to be valuable in narrowing down your body image better, even though bilateral amputations are surely a valid enough reason to use a wheelchair. After you use it for a while it would be interesting to see how your thoughts about it solidify.
@Shadow: No, no one is alone! It seems that whatever a mind can conceive it can never be exclusive to only one single mind. As strange and weird as BIID is, we see that there are many of us who share it- and I used to think I was crazy. I also feel some jealousy about TJ’s chair as well- I have a TiLite ZRa and an X- I just don’t think there’s such a thing as too many wheelchairs!
@Shadow: Like I said it varies day by day, but the more I think about it, the constant want is to be a DAK. That never goes away. The want to be a para fades in and out. It’s really really really hard to get a handle on, because so much of it is dependent on my overall mood, depression, anxiety, stress, etc.
@Mark: BIID can really be strange, eh? You want to keep your body shape, I want to drastically change mine. Yet down deep somewhere we have the same desire for an alteration of some sort to make us feel whole.
I hope that by using a chair I will reach some point of clarity about myself, about who I think I am and who I’m perceived as being.
I’m jealous of your TiLIte ZRA. That was the other chair I was considering. How do you like it?
I love my ZRa!
Honestly, If I did have my legs amputated I wouldn’t be heartbroken about it. I’d just rather them be useless, flaccid and numb than to be gone. Your statement confronted me a bit, and I asked myself why I feel that way. I can’t explain why I want to keep the parts that I don’t want to use or feel.
The additional losses of bladder, bowel and sexual function I can do without as well. I guess just to be unaware of everything below the hips would be the ideal for me, but to be an amputee would also mean that I’d have feeling in the stumps.
Yes, BIID is really strange…
@Mark: Would, for example, a bilateral hip disarticulation work for you? You wouldn’t have any feeling below the hips – you wouldn’t have anything below the hips.
@TJ: Then DAK is the ideal impairment for you, no? But I definitely understand how personal mood, stress, etc. can affect level of BIID.
Yeah, BIID is strange, isn’t it? It ranges from people needing minor disabilities to what would be considered major disabilities in today’s society, and yet the core desire is the same.
@Shadow: BHD is one of those things that have crossed my mind a few times, but again, the extreme change in body shape makes it unattractive to me. I think the thing to say is that I want to look like a complete physical human even though nothing works from the hips down.
I’ve also had a lot of BHD fantasies. They disappeared after I acquired sensory loss in my left thigh. The pleasure of touching my thigh and not feeling anything is amazing! I know that’s how it’s supposed to be for the entirety of both legs. Simply not having legs isn’t the same thing; though I doubt I would consider it a total disaster.
@TJ: Welcome! I’m glad you’ve decided to open up and talk with us about yourself. Much like you I spent most of my life feeling like I was living a lie, pretending I was normal, that I was OK. I hope you find that people are as accepting as I have.
Looks like a nice chair you’ve picked out, I hope it serves you well. I’ve also had my eye on a TiLite ZR/ZRa for a while now. When my current chair wears out from the abuse I put it through, that’s what I’m getting.
There’s an article over on CNN.com this morning about trangenderism. A quote from the article struck me, “You’re only as sick as your secrets.” Secrecy is a wedge we drive between us and a healthy, happy life…
@Shadow: It might be best if you take it slow, at least until you are a legal adult. While I would not want to discourage you from being open and honest, first and foremost, be safe. I’m sure you don’t need a lecture on this… You don’t need problems at home or at a school.
Hmm. A question to you guys: If you, through pure chance, acquired an injury that was more than what you desired but still included the desired injury (i.e. quadriplegia instead of paraplegia, DAK instead of RAK) would you be mostly satisfied or not?
@Xavier: Yeah, I know that’s the best course of action. Idealistically, though, it would be nice to have someone in real life to whom I could talk honestly, but that will come later.
@Shadow: My image is L2|L3 complete paraplegia, so total neurologic loss from about the hips down is the desire. Bilateral loss of legs either as AK or HD wouldn’t really break my heart, but it wouldn’t be the correct image of having useless legs. IF the paralysis were slightly higher and encompassed the L2|L3 image, it would be satisfactory, mid-thoracic for example, but cervical lesions resulting in quadriplegia would be a total disaster. The arms have to stay.
@Xavier: Thanks! I’m so happy to be commenting here. My chair arrived the other day and this evening I took it out for a quick test spin at a far away airport terminal. Big open space with lots of flat ground. Wheeling around felt like the most natural thing in the world to me. It’s very difficult to describe, other than cracks were forming in the giant block of pain that’s been hovering over me for many years. “How is it that I didn’t do this before?” I kept asking myself. However, once I got home I had an anxiety attack in the car while parked in my driveway – knowing that it’s going to be a few days before I can wheel again I just couldn’t bring myself to get out of the car and *not* assemble my chair and wheel off.
@Shadow: I guess it depends on the extent & location of the injury. While my ultimate goal is to be a DAK, if anything happened to my arms or hands I would have a very very difficult time adapting and living some semblance of a normal life as I define it. But if my legs were amputated higher than I want or if my stumps were paralyzed, I could find ways to accept it and move on.
@Shadow: I have given extensive thought to the quadriplegia issue. For me it comes down to whether it would be possible to maintain an independent lifestyle. If not, then I would consider myself to be worse off than my current situation. However, a lower cervical injury such as C6 should still allow for independent living, and I would be satisfied with that.
The one attempt as a child that I made in order to acquire paraplegia actually carried a higher risk for quadriplegia. However, at that time I wasn’t really thinking logically about such things.
@Shadow: I would not be happy at all. I don’t truly want to be disabled in any way, nor do I want to have BIID. But it seems I may have little choice in the matter if I want this agony to end.
@Chloe: My one, highly stupid attempt when I was a kid also carried a high risk of quadriplegia. I was not comfortable talking about this until recently. I once ran myself into a tree head-first on my skateboard (laying flat on the skateboard). I was young and stupid and not really able to grasp the consequences of what I was doing. I’m not sure what I was thinking, probably that I would end up in a wheelchair. Obviously, I did not succeed and I’m glad I’m old enough to not be so stupid now because that could have really turned out badly.
I may have actually done some damage, a few years ago I went to the doctor having horrible migraines. They recommended a chiropractic adjustment and did an x-ray of my spine. The doctor looked at it and asked if I had ever had an back or neck injury, one of my thoracic vertebrae (T2 or T3, I can’t remember) shows obvious signs of injury. You can see that my spine takes a sharp curve right at that spot. I wonder how close I really came…
Lesson of this story, don’t be stupid.
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1 On 29 December, 2011, TJ said:
This seems like the perfect post for me to introduce myself. I’m TJ, and this last week I privately came out to Sean over email about my BIID. He’s the first person I’ve told, and thanks to Xavier’s post I have the confidence to stop lurking around this site for the better part of a year and come out to the rest of you, albeit in a comment.
My new year’s resolution is to stop living a lie inside. For too long I’ve constantly been nagged with the feeling that something is wrong with my body, something needs to change. Since elementary school I’ve wanted to be confined to a wheelchair, and in the last few years I’ve had the feeling on and off that I want to be a DAK amputee. Every time I see somebody in a wheelchair or think about myself in a wheelchair I get a tingling in my thighs at the exact spot where I know I want my legs to be amputated. Other times I get a tingling up and down my legs because I don’t want them to work anymore. The feeling shifts back and forth between the two, but it’s there. I’ve been a quiet devotee on the internet of other DAK amputees to get just a vague sense of what their life is like, and that seems like it.
In the last two weeks everything sort of collided. The stress of holiday travel, the constant mental torment, and a chance encounter with a DAK guy about my age in an airport finally caused something in my brain to snap. I got a decent holiday bonus last week that was the last bit of cash I needed to finally buy a wheelchair. I found an Invacare Crossfire T6A in my exact measurements and didn’t hesitate to buy it now.
It arrives next Tuesday. Just thinking about it has made me happier than I have been in years.
I have all the usual fears about coming out to those closest to me, but in the end I know it will be the right thing. I’m sick of pretending to the outside world that everything is fine, that I’m doing ok, that there’s nothing missing from my life. I’m TJ, I have BIID, and I need to wheel.
Thanks Xavier.