So what’s been going on in the last two months? Well, other than the usual sunshine-feeding frenzy that is a Seattle summer (blink and you’ll miss it), I’ve made some new connections with other MSer-types.
In July, I met a vibrant, athletic woman who’s currently dedicating herself to spreading the word about CCSVI. She’d had the procedure just a week before and regained her ability to make a fist with her right hand and said the numbness in her right leg had gone away. Her doctor was at Georgetown University and works with Dr. Zamboni himself, so it seems she received the best possible care. She still walks using poles for balance and wears one of those WalkAide devices on her calf to help with foot drop on her left side. But she was remarkably optimistic about her treatment and rearing to spread the word–she was spitting mad about the MS Society’s perceived incompetence in studying CCSVI and the pharmaceutical industry’s and medical community’s reluctance to endorse this treatment. Since then, she started a Tumblr, appropriately titled, I can make a fist, but I haven’t seen any updates yet. I hope she’s still doing well.
Then, last weekend, I attended the MS Society-sponsored Speakeasy at the Cinema event at the Central Cinema. I went with my sister, who I think saw the 5-hour event as more of a bonding opportunity for the two of us, but I was more interested in seeing who else showed up.
It was SO COOL to see a theater full of 40 or so other people with MS who appeared to be close to my own age and social demographic. The speakers–two neurologists and a social worker who focused on love and relationship issues–were pretty good, but what excited me most was the opportunity to talk to others like me. I don’t know why it’s taken me so long to find others “like” me (inasmuch as anyone, let alone people with MS, can be like anyone else). Laziness, maybe? I suppose I’d assumed it would be a lot easier to find groups of young folks with MS in Seattle (it’s the MS capitol of the world, right?), but no one I talked to, from social workers to doctors to support group members, seemed to know of any groups for 20- and 30-somethings. They just referred me to the MS Society, which was a dead end.
So I’m happy to have found these people and hope to meet with them when they get together for coffee or drinks or brunch (I love brunch!). They welcome new members, but cheekily caution, “If you’re a Hallmark©-card persistently “up” cheerleader type person with MS, you need not apply.”
Sounds like my kind of people.