Last week, My oldest asked me a question that stopped me in my tracks. The next day his brother and sister asked me the same one.
It was not about the birds and the bees. Not about why Bill Belichick wears that cut off sweatshirt. Not about why I insist that there are starving kids in China so they should just eat dinner and be grateful.
We told our kids last week about my upcoming transplant, and all three kids asked me why I have a “brain boo boo” (which is what we called my MS). Each of them wanted to know if it was something I was born with or if I did something that made me “get” MS. Once I found my breath again (each time), I tried to formulate a response, but I didn’t have a real answer for any of them.
I think a lot about why I “got” MS.
I do think I was genetically predisposed to it. I come from a long lime of people with autoimmune issues (even before they were referred to as such), but I also wonder if something happened that turned my autoimmune “on switch” to full blast.
I’ve half-jokingly said for a long time that I “got” MS from a water park that I visited when I was a camp counselor in late July 2002. I was jumping in the wave pool that day, I was in the hospital getting a spinal tap to investigate the double vision I suddenly began having that night. Did I get Epstein-Barr at splash water kingdom? While it should be obvious that waterparks (while amazingly fun!) are cesspools of filth and disease, I also have to admit that I had mono in 4th grade, which some doctors link to MS. And I’ve always had food intolerances, so maybe it is a gut-barrier issue that is all the rage these days. All possibilities, I guess. I’m not that kind of doctor…
But, I also wonder if I had been less of a perfectionist, less of a worrier, and less high strung if I’d be where I am now. If I walked around with less guilt, maybe the medicines would’ve worked better. Maybe I wouldn’t have developed anxieties that keep me up at night. Maybe I’d be able to participate in Walk to school Wednesday with my kids. Maybe I wouldn’t be writing this post or be leaving on a jet plane soon. Who knows.
I already know people will disagree with this. Part of me feels like it is a big of blaming the victim, too. But I also know that I’m looking to make changes in my life and in myself. I think many people are looking to do the same thing. I just have a stem cell transplant as a catalyst.
I’ve already made some changes. I’ve shared my story, asked for (and accepted!) help, and admitted that I’m not superwoman. I’m actually just really tired and a little bit bored.
I don’t know how I “got” MS. I don’t have an answer for my kids, but I know that I’m ready to stop feeling guilty. Ready to chill out. Ready to have days that turn the 80/20 philosophy on its head. Ready to forgive myself. Ready to move on.
When I used to sleepover at my forever friend’s in High School, I would always wake up before her and walk over to her family’s book shelves in the early morning hours. One book jumped off the shelf at me again and again, as if it was preparing me for what was to come. The book was When Bad Things Happen to Good People by Rabbi Harold S. Kushner.
I wish I had an answer for my kids. One for myself. One for every other person battling. But it seems like one of those times when the how and the why don’t matter nearly as much as the what next.