When my 12-year-old kid sister B. visited recently, I was wondering whether I should tell her that I have MS. Well, she already knew. Kinda.
For the first day or so of her visit, I had the feeling that she was acutely aware of my every little stumble, every little wobble. I thought she was watching for it. I thought I saw worry on her face.
The next day, I asked B. if our dad had ever talked with her about my health, and she said yes. Then I asked her what he said, and she hesitated, then said, "Well, there was this article in the paper about a new kind of treatment for MS; I don't remember what it was..." So she knew I had MS. I asked her if she knew what it meant, and she said "Um, not really."
So I told her that it affected my balance and my ability to walk, and that sometimes it made me really tired. I told her that I've had it since right around the time she was born. I said they don't know how to cure it right now, that it wouldn't kill me, but that it might mean that someday I'd have to use a wheelchair. I told her that it wasn't something she would get just because she's my sister, and that if she ever has any questions about me and MS she should ask me.
I was nervous. After 13 years, I had gotten to the point where it's less painful to talk about MS and me, but I had never talked about it with a kid before.
The next day, I thought I hadn't done a very good job. It just seemed incomplete. I certainly didn't think she needed to hear about bladder troubles, sexual dysfunction, and the time I peed in my shoe, but I wanted to a way to start the conversation again. So I took out my MRIs.
I showed the how the MRI took pictures of slices of my head. I pointed out my brain, my eyeballs, my teeth, my tongue, the spots that represent the lesions in my brain, explained what it's like to get an MRI, explained why they call it "multiple sclerosis." She was fascinated, and totally engaged. Like me, she loves science stuff, and she seems to remember just about every little factoid she learns about science.
She had known, but probably just enough to be scared. Why didn't I do this sooner?
technorati tag: multiple sclerosis