Two weeks ago I attended the Neuromuscular Disease Foundation’s 4th annual patient symposium. Though I thought I’d be ready to blog about it by now, it turns out my mind is still busy unpacking all of my thoughts and feelings around it. There was the collective grieving of the failed clinical trial, the experience of meeting patients I had only ever corresponded with on Facebook, the painful realization that I am by far no longer the least progressed patient in the room and finally, the sobering news that the most promising treatment-gene therapy-will require a staggering 3.5 million dollars in funding.
I feel sad. I feel deflated. I feel disheartened. I feel angry. I feel betrayed. I feel frustrated. I feel helpless. I feel overwhelmed. I feel rage. I feel tired. I feel drained. I feel exhausted. I feel scared. I feel terrified. I feel desperate.
While innocently scrolling through Facebook during my older son’s High Holiday choir practice just minutes ago, I was ambushed by an article announcing that Ultragenyx Pharmaceutical is terminating the development of the drug ACE-ER because phase 3 clinical trials failed to demonstrate significant improvement in muscle strength. They’ve been at it for years. Ultragenyx’s mission is to develop drugs for rare and ultra-rare diseases.
I have been a feeler of feelings for as long as I can remember. When I was young, I used to write long, sentimental birthday and Mother’s and Father’s Day cards. My sister used to tease me (still does), about my overly expressive, touchy-feely “treatises.” On Thanksgiving, I was always the one (still am) to make people go around and share what they were thankful for in the past year. Or on Shabbat, what they were grateful for in the past week. I have about 15 diaries from my youth, sitting in my garage, all filled with pages and pages of feelings.
Summer used to be one of my favorite seasons. Not just because it is kicked off by my summer solstice birthday, but because there has (historically) always been a carefreeness built into my summers- wearing sundresses and flip-flops, frolicking around at the pool or beach, traveling on summer vacations (my personal favorite). Throw in hours of sunshine and long lazy summer nights and there’s not much to not love.
This year, my 6 year old son decided he wanted to play basketball on a team. He is no doubt the sportiest among us. We signed him up willingly, but secretly dreaded getting up and out for games on a Saturday at 9AM. We haven’t been a part of the whole group sports subculture until now and we weren’t sure it was for us. But turns out, the whole experience has been so much fun. Sure, it’s been tricky for me physically- trying not to get knocked over when the doors open to the gym and people come rushing in and out, or trying to hobble my way quickly enough across the court to get a seat before balls go flying – but those discomforts have been in the service of something so comforting. As silly as it may sound, going to and from basketball practices and games every week has been quite normalizing for me. As in, it’s given me an opportunity to feel like everybody else. It’s what so many moms and dads do. I get to feel typical, regular, just like them. All of the feelings that HIBM has taken from me over the years.
Three and a half years ago, I booked a family trip to Club Med, Ixtapa. It sounded ideal – an all-inclusive beach resort with non-stop activities for the kids, an easy direct flight from LA and a time change in the right direction. My sister and her own family had gone for years and raved about it. I wanted in on the action too. When I told my sister about our plans, she gently warned me that it may be hard for me to get around such a large resort. I initially dismissed her concern, in part because that’s always my initial reaction when confronted by yet another disease-imposed limitation, but also because I figured (hoped) she was just staying true to her lovingly over-protective big sister self. But after a few weeks of thinking more seriously about it, I canceled the trip. It wasn’t a major tombstone to add to the cemetery of losses, but giving up on a vacation because of this disease was a tombstone nonetheless.
The first time I ever went dancing with my now husband, he called me Elaine. Of course, as a fellow avid Seinfeld watcher, I knew exactly what he meant. I wasn’t offended, because if there’s one skill I always had confidence in, it was my dancing. If you’re not familiar with that particular Seinfeld episode, it’s the one when Elaine gets a company party going by showcasing her hilarious, ridiculously uncoordinated dance moves. I think what perhaps my husband was tapping into at that moment was my complete lack of self-consciousness on the dance floor. (Or so I liked to believe.) You know that bumper sticker that says, “Dance like no one is watching?” Well, before I ever read that, I never even knew that was a thing. Was I supposed to feel self-conscious when I danced?