I was sitting in the blue chair in the formal living room. We always had Christmas and family meetings in the formal living room. Other than that, we weren't allowed to sit on the furniture in there.
Usually family meetings meant more chores. But not this one. This one changed our family's reality forever.
They took out her CAT scans, which they have always called her "Halloween pictures," and pointed out the lesions, explaining that a normal brain doesn't have these and that they cause the neurons in her brain to stop communicating correctly with her body.
My brother and I didn't say much. We had never heard of Multiple Sclerosis, and it didn't really occur to us that this was a really serious diagnosis that meant her life would be uncertain forever, something they had probably cried about together and thought really hard about how they would tell their 11 and 14-year old kids.
Our lives went on as normal and we didn't think much about it except for when we were teasing her about her "brain problem," parking in a handicapped spot, or watching her get an injection every other night. We were kids; we didn't really think about the fact that she got tired easier because of the MS, or that the MS was the reason her leg would jerk and accidentally kick us lightly when we laid next to her, that the MS was why we had to get to rest stops fast on road trips when mom had to pee, or that the reason she felt crappy sometimes was because the Betaseron gave her flu-like symptoms.
(The link at the end is from last year - it's 2011 now, not 2010)
Looking back and seeing the miracle of how this newly-developed drug that Mom began taking affected the progress of her MS is really striking. No, we don't actually know what would have happened to her had there not been treatment, but I'm really glad we didn't have to find out.
She has hard days. There is no doubt about that. But it could be worse. With this disease, it could always be worse.
And now, there are eight FDA-approved disease-modifying drugs for the disease. Eight. Plus countless others in the pipeline, being tested and waiting for approval. Drugs that mean new lesions won't develop, that symptoms won't get worse, and that life with MS can be less scary and uncertain.
And soon? I believe they'll come up with that cure we so desperately need.
So this post is really kind of a pep-talk, to myself and to others, that it's all going to be worth it. All the planning and coordinating a currently unsponsored BikeMS team, all the training on a bike when I have no interest in doing so, all the extra hours spent on this when I have no business adding to a full schedule.
It's worth it.
Because somebody's mom isn't in a wheelchair, and may not ever have to be.
(If you'd like to learn more about my BikeMS ride or donate to the National MS Society on my behalf, you can do so here.)