transabled.org

This is a perceptive post. BIID affects those close to us, and they do need to grieve the consequential loss they experience. It behooves us to show compassion to those affected.

Every action I have taken with respect to BIID has been with Alicia’s prior consent. That does not diminish her need to grieve. She had to come to terms with the fact that she would never again be going out with me unless I had either a leg brace or a wheelchair. It wasn’t what she, or I, had in mind when we made our commitment to each other.

The grief does not last forever, and it is replaced by acceptance. The expressions of frustration are gone. Yesterday Alicia was telling me that she does not see me as having a disorder, but rather as progressing on my journey towards authenticity. She writes poems of affection about me being in a wheelchair.

I too would have handled things differently though. In the early days I was wrapped up in myself, and not paying nearly enough attention to consideration of the feelings of grief she was going through over her loss.

@ Gordo: Surprisingly I feel very little sense of loss. Yes, I am much more limited where I can go for walks but other than that, I haven’t changed my lifestyle at all. With SCI, there would be more radical changes(like taking care of the internal plumbing) but with wheeling itself, I don’t miss almost anything.
As for the family, we each have to make choices that bring us the most peace. And that will be different for each of us.

My two cents: A big part of grieving is coming to terms with the surprise realization that one really does not control the path of one’s journey in life. Here we have a situation where the husband’s marriage has taken an unexpected track, and we outsiders know that in order to stay sane and/or stay married, he must get himself to a new place of acceptance.

I would say it’s mostly the same grieving process as in the more usual situations where wheeling becomes a part of the family’s life. However, it might be worse for him than “if I really got an impairment or became sick” precisely because he may have trouble seeing your condition as real. Thus, he feels grief but is conflicted about that; he’s not sure that he *should* be feeling grief.

What I’m saying is, a truly adult person would see the need to grieve and accept, for the benefit of himself and therefore of the marriage, and would love you enough to go through that process willingly, as long as you love him enough to be there for him at every stage of it.

I would guess that my partner is more afraid of what could happen to me, about the potential loss than about me having BIID or using a wheelchair from time to time.

It’s the unknown that horrifies him, I guess.

And the things he might miss if I were a double above knee amputee. Things we do easily and without thinking TOGETHER now.

One more thing irritates him, he said: He doesn’t want to have to lie because of me. So should I ever get “caught” using a wheelchair by a friend of his (even a person whom I might not remember) and this person asked him why I use a wheelchair, what is he going to say? Not a comfortable situation for him.

Etc. etc. It is not easy for partners and family.

@Phil, should he get asked about your use of a wheelchair, he should simply say “It is not my place to tell you, ask Phil”. THen, he is not lying, and it is up to you to decide which is the best way to approach the question.

Dear Sean, thanks for your suggestion.

It depends on who asks. To some persons, such an answer would seem a bit unfriendly and overly distanced. And it would make people curious.

Well, I don’t have an answer myself, so how could he? My therapist had the best advice: Simply say “it’s an experiment”.

@Phil:
I agree with Sean.
Experiment, research, both would work. Your partner could just say that you work on some research, I used that a couple of times.