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.
I’m coming up on 10 years of knowingly living with this disease. An entire decade. One fourth of my life.
Throughout these past 10 years, I have mourned losses, adjusted to new baselines, adapted new ways of coping, advocated on behalf of patients and invested a tremendous amount of emotional energy in trying to keep perspective and stay in touch with the gratitude for all my blessings. I am proud of myself for tapping into resources within me that I never knew I had. I am proud of myself for learning how to hold the pain and the joy in one hand. But also, I am exhausted. It feels like I’ve been at it for long enough. Too long. I want to be done with the mourning and just focus on the coping. I want this part to be over.
I was going to post yesterday, but I chickened out. I was going post about how, for someone who feels in touch with gratitude on a regular basis, it was disappointing to not feel it to the degree I normally do on Thanksgiving. Thanksgiving is like my gratitude Superbowl. It’s when we are all so in touch with all the ways in which we are blessed. But I haven’t been feeling as grateful in this past month. It sounds so taboo. I guess it’s not that I haven’t been feeling grateful, it’s just that it’s been harder counteract all that I’m not grateful for. And yesterday, I didn’t want to be a buzzkill. Or even offend anyone. So today, I wanted to share. I wanted to tell you about some experiences that have felt hard in this last month. And where I have ultimately found the gratitude.
As I sat down to write this post, I realized how often the topic of my home has come up on the blog. Or at least, that’s how it feels. Probably because I’m so intimately acquainted with it on a such a micro-physical level. It plays an integral role in my daily life and overall feeling of well-being, as I’m sure many homes do for many people, but in different ways and for different reasons.
We recently embarked on a kitchen remodel. We wanted a new kitchen not only because we love cooking and being in the kitchen (especially with Noah’s recent into foray baking bread), but because as I slowly get worse, I am becoming increasingly impatient with my limitations. I am continuing to have to increase my tolerance for frustration and, quite frankly, I’m over it. I love cooking, I love coming home from work and making dinner for my family, but as the only adult home during that time, I can’t function as efficiently as I used to. As my calf muscles melt away, it’s becoming harder to stand on my tippy toes to reach the dishes on the second shelf of the cabinet. Or as balance becomes trickier, it’s getting harder for me to walk over to the trashcan holding food waste and then press the pedal that lifts open the lid. And it’s been a while since I’ve been able to fill up a big pot with water and lift it up onto the stove by myself.
Exactly a month ago, I was walking over to say goodbye to my younger son and our nanny at an indoor play area and I tripped on a toy and fell. I went down hard and my left hand, the much weaker one, bore the brunt of it. A bunch of people saw and rushed over to me, but per my usual, I played it cool. I told them I was fine. I can’t stand that kind of attention, probably because it’s on top of what is now a new baseline of daily unwanted attention. Luckily, my son didn’t see and I decided to skip the kiss goodbye and instead wave from afar. I needed to get out of there as quickly as possible. I came outside and saw blood leaking out from under my rings on my ring finger and discoloration on my skin. It hurt like hell. I walked to my car, not just feeling the physical pain but the emotional angst of realizing that I probably wasn’t going to be able to go exercise that morning. (Exercise is no longer an optional luxury but rather a means of muscle preservation and survival.) Within minutes, my ring finger started to blow up. Luckily I had the sense to take my rings off right away. I started driving. I didn’t know where to go. All I wanted to do was drive to the gym. But two blocks in, it was getting so bad that I had to pull over at a random Taqueria and ask for a cup of ice.