transabled.org

uses to be howard.i agree with your article.i know in the past i offered hard core solutions.but im a hard core individual.surgury isnt 4 everyone.i talked to pretenders on other sites who have said once they took the plunge and went to chair full time even w/out an injury they felt less like wanting a injury.and less like talking about biid.the fantasy in and of it self brought profound relief

I am NOT ready. My BIID is right now manageable with wheeling.
I agree with Sean, we each have to find our own way. And surgery is not for everyone.

@elisabeth.to clarify a point.i did not mean to imply you should wheel full time.i quoted a woman who said when she wheeled full time she thought less and less of injury or surgury.i have never known you to think of surgury or injuring your self anyway

I simply don’t know. And as long as I am not 100 % certain, I am not ready.

But I often have the feeling that I am approaching readiness, slowly but steadily. Wheeling is not a big relief for me. I can’t integrate it into my everyday life (for a number of reasons).

I am still following some paths and am still doing introspection and a bit of therapy. Some days I feel as if I could live with BIID and my legs. Most days I could cry and would go to a surgeon if there was one around.

As a friend said: You will know when you are ready.

But even then, like you, Sean, I couldn’t find a surgeon who would do what I need (high DAK).

In the meantime I try to advocate our case, work with researchers and journalists, keep in contact with many other people with BIID and search for a new attitude towards myself, BIID, legs and life. What else could I do? Maybe it would be better to just think about other things and live everything else in my life to the fullest. I have to admit that I don’t. I can’t. I did more years ago. But it becomes more and more difficult.

When I look into the future and think that I have to live with BIID, maybe even growing BIID, for the next year, two years, ten years or maybe more, I really get depressed and panic. Something has to change.

@Phil, you hit it on the head exactly. For me, “When I look into the future and think that I have to live with BIID, maybe even growing BIID, for the next year, two years, ten years or maybe more, I really get depressed and panic.” I’ve been at that stage for many years now, and it’s getting worse. The prospect of another 5 years before I could become a para scares the crap out of me.

People tell me to be patient, that you never know what’s around the corner. But they’ve been saying that to me for years. I can’t wait to be patient anymore.

Financially I’m not ready (when is anyone ever ready financially?), Emotionally and mentally I think I’m ready.

I know I’m not ready. But I’m young and BIID has been getting steadily worse for me over the last 10 years so I imagine it will continue to do the same in the next 10 (and more) so I probably will reach the stage where suppression nd trying to mostly ignore it (except the odd day here and there) won’t work anymore.

Thank you for this post Sean!

I wholeheartedly agree that surgery is not for everyone. But, that does not equate to NOT being an option for *anyone*!
I believe surgery should be an option!!

I think Phil said it well, “As long as I’m not 100% certain I am not ready”.

That is the point however, isn’t it?
Those that *are* 100% certain, should have the option, and they do NOT!

Sean: From what I know of you, I think you are ready. Emotionally. Physically. Psychologically. Pragmatically. Maybe just not financially :(

As for me: I’m 100% certain, only sometimes.
Currently, I have more better days than not.
I’ve abandoned wheeling, and am working to “manage” my BIID through suppression and denial :D
Even if I had the money, I’m not ready. Not right now. I know that.

That does NOT mean someone else isn’t ready!!!!!

It only SUCKS that we aren’t given more control over our bodies!
Will these medical “professionals” ever learn??????????????????????????????????????