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?
Tonight the Neuromuscular Disease Foundation hosted a dinner party to celebrate its 10 year anniversary. It was an opportunity to bring together scientists, researchers, NDF board members and patients living with HIBM. It was not a fundraiser, but rather an evening to thank everyone who’s been involved over the years and to share all of the progress that has been made towards raising awareness and finding a treatment. It came at the end of the first day of a two day symposium on HIBM. The symposium has become an exciting annual event organized by the NDF. Scientists share the status of their clinical trials and patients get to ask them questions directly. It’s an invaluable opportunity. This year, patients flew in from as far away as Japan and Portugal. It all took place a mile from my house at UCLA. It could not have been more convenient. Especially since it wasn’t even a work day for me.
It’s like that feeling you get when you know you are going to throw up, but you don’t know when. You try to convince yourself that the nausea will pass. You distract yourself. You wonder if maybe your body’s just being hypersensitive. You are desperate to avoid the extreme unpleasantness that comes with vomiting up your insides. And yet, you know that you’re inevitably going to have to endure it if you want some relief. Once it’s over, your stomach will eventually settle. But it’s so scary. And so uncomfortable. You hate it. And there’s nothing you can do to stop it.
When I was first diagnosed with HIBM (or as it’s now often called, GNE myopathy) almost 10 years ago, I couldn’t even say the name of the disease out loud. I could barely accept that I had it. I didn’t want anything to do with it. I didn’t want to read about it, I didn’t want to talk to any other patients, I didn’t want to attend any fundraisers and I most certainly did not want to meet any other patients. It was all I could do to cope. I was barely hanging on. It was all too much. Too scary. Too painful. Too real. So I didn’t push myself. I went at my own pace. I knew it was to the dismay of some loved ones who thought it would benefit me to reach out to other patients for support. Especially those who seemed to be doing quite well living with the disease. But I wasn’t ready. I admittedly felt a bit self-conscious of my process. It seemed that other newly diagnosed patients were able to jump right in and access any and all resources that were available to them. But I wasn’t.