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Missing Half My Life
Written by Claire on Tuesday, October 31, 2006
Yesterday was a special day for my 10-year-old daughter. It was one of those premiers in life, one of those moments you’re supposed to remember forever. We went out of town for this event, just me and her, and planned some shopping while we were there, and a visit to a couple favorite places to make a day of it. It was an event where other children were involved, and parents who are good friends of mine were also there. It was supposed to be a fun day, and I had been looking forward to it for weeks.
So, through all of the excitement of watching her in this special debut, the anguish when she made a bad mistake that was obvious to everyone, calling out encouragement, cheering with the other parents, the pride I felt when she did something particularly well…I couldn’t stop thinking about that wheelchair. Nothing was right about the entire experience because I wasn’t in the wheelchair. My mind was half on the event, and half on the wheelchair the entire time. I just wanted so desperately to be in the wheelchair. I felt like if I could be in the wheelchair, then everything about that moment would be perfect, because I wouldn’t have to think about the wheelchair at all, but just concentrate on my daughter’s event, and feel the full joy of it. I just hate missing out on half my life because of BIID.
I don’t think my daughter knew anything was wrong. I’ve managed to hide this for 30 years, after all. I made all the right noises, said all the right things, hugged her, kissed her, loved her. Put up a grand facade. I hope she’ll never know that I wasn’t as proud as I should have been, wasn’t as happy for her as I should have been, didn’t enjoy our special day as much as I should have. As much as she did. She had a good day, and that’s what’s most important.
It was a very long drive home, and I started to get really down; tired of the guilt, tired of fighting it, tired of dreaming dreams that can’t come true, tired of having to pretend interest in my real life, tired of trying to accept the inevitable, tired of looking forward to experiences that can only be a pale imitation of the real thing, tired of being told that there’s no way out…
[tags]BIID, sadness, depression, obsession, family, children, wheelchair[/tags]This entry appears in Claire's Thoughts, Other's Thoughts, Thoughts. You can follow any responses to this entry through the RSS 2.0 feed.
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3 Comments
2 On 6 November, 2006, Sean said:
Thank you for posting Marie,
As a person who has been transabled for over 30 years, I can tell you that we *wish* we could be glad to be able-bodied… But it’s not that easy, is it?
3 On 6 November, 2006, Claire said:
Hi Marie. Thanks for your comment. Believe me, the irony is not lost on me. But I can’t help being transabled any more than you can help having CP. I just am this way, and have been since my earliest memories. It’s not something I can wish away because it’s not really practical, or because someone else tells me I’m not missing much. That’s why they call BIID a mental illness, a disorder. Because it doesn’t just go away when you tell it to. Like any other disability, mental, emotional or physical.
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1 On 6 November, 2006, Marie said:
As a person with severe cerebral palsy, who has lived 20 years in a costom made wheelchairs, you aren’t missing much. Please be glad that your able-bodied.