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BIID is taboo in this household.
Written by Sean on Wednesday, April 25, 2007
I have recently done a fair bit of research and managed to find over 30 articles, studies and research papers about, or related to, Body Integrity Identity Disorder. There’s more, which I’ll get. I’ve printed it all and put it all in one binder. And I’ve been reading and highlighting and making notes for myself.
I hadn’t told my partner about it. I hadn’t been hiding the binder either, but I didn’t particularly feel like bringing this up as a topic of conversation, considering the fiasco the last time we discussed it.
But today, I thought, "the hell with it", and pulled the binder and worked on it in the lounge. I didn’t make a point of telling my partner what I was working on, but I didn’t hide the fact either.
I hadn’t had time to read 2 pages when my partner walked in the lounge and grabbed the tv’s remote. She said "Oh, I’m sorry, I didn’t realise you were studying. That doesn’t look like what you’re studying at University".
I explained that when we had watched that documentary about the surgeries in Falkirk, I decided I wanted to learn more about my condition. She didn’t say anything for a second, then said "You know, I know the solution to your problem: amputate at the neck".
She said it as a joke. but it’s the third or fourth time she makes that joke. It’s not even remotely funny.
She turned on the TV anyway, and I kept reading, but every two minutes she interupted, made comments, asked me if I’d seen a particular scene on the show. When I stopped reading and "watched TV", she stopped making comments.
So, not only is she uncomfortable with talking about it, and uncomfortable with the fact I have BIID, but she’s not even wanting me to read about it. As if this topic is now taboo in this household.
What seems to hurt even more is that early on in our relationship, when I explained about needing to be paralysed, she was so supportive, open minded. She was telling me that she was sure that I’d find a way to get what I needed, that she hoped I could be the person I needed to be. But slowly, over the years, as she’s lived with the reality of my using a wheelchair day in and day out, she’s changed. And to be fair, it must be hard on one’s partner. But I can’t help wondering if she really has changed of if she was just pretending to be ok with it, fooling even herself into thinking it.
I don’t know. But I know that events like this afternoon certainly ruin my day and don’t make me want to share more with her.
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3 Comments
2 On 26 April, 2007, Sean said:
The thing about those “jokes” is this: they repeat them order to vocalize their displeasure in a way that allows them to do so without you being able to retaliate or get visibly upset.
Wow! Thank you. I had never considered it that way, but it makes immense sense. Thanks for that.
It *is* hard to be a SO of a wheeler. There are places you just can’t go - or you have to go alone, and the whole point in going there was to see something you could share in the first place.
There are so many places, it’s amazing and disheartening.
Little antique shops? Usually a couple of steps up and no ramp. And even if you got in, no clear aisles because everything’s all jammed in there together. This also seems to apply to used book stores and quiet little coffee bars.
Even the grocery store can be fraught with peril.
How do you do it, I thought the other day when I was grocery shopping? All the #*%&*% displays in the aisles, which aren’t that big to begin with…
I have a wheeler friend who says she never goes out between Thanksgiving and the day after New Year’s because the shops are like an obstacle course.
Well, I rant. But it can have its downsides, even for a dev.
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1 On 25 April, 2007, Claire said:
:o( It’s funny. If it were *anything else* they’d be more understanding. Like if we had Bipolar Disorder. Or had actually had a spinal cord injury. They’d deal with it. But BIID, forget it, they’ll never get it.
The thing about those “jokes” is this: they repeat them order to vocalize their displeasure in a way that allows them to do so without you being able to retaliate or get visibly upset. Because if you do, they will just tell you they were joking and that you have no sense of humor.
I have a sense of humor, but repeated jokes about issues that my husband knows are sensitive issues to me are nothing more than an attempt to dig at me and get a point across while leaving me helpless to respond.