My FSHD means I can be someone who changes the course of this disease for generations to come
by Colette Wheeler, Los Angeles
This is an edited transcript of a talk Colette gave at the Los Angeles FSHD 360 in 2021 (see video above).
Recent news leads you to believe there’s such incredible science happening here in the FSHD community, so you think, “I’m going to be in a clinical trial, I’m going to get early access to a drug, everything’s great, I’m going to run a marathon next year….” But in real life, that’s not exactly how it goes. I want to share what it’s actually like to participate in research.
First, it is very long days when you factor in travel and getting to and from all the buildings. And it’s a really close look at your progression. You’re doing physical things to show where you are in this disease. Doing some of the assessments is difficult. The next day, you’re sore. It makes me happy that so many want to participate in a trial, but I want to set expectations.
A mental game
It’s not just a hard day physically, but it’s also a mental game. The surveys ask you tough questions like, Can you lift a baby? Some of the questions are ridiculous, like, Can you dig a six-foot hole? But these questions are hard to get through. Grading yourself is emotionally difficult, and you have to be mentally prepared to do it in front of a coordinator or your loved one.
It’s also really hard to keep your expectations low. I’ve enrolled in four or five studies to date. If you are doing a study for a pharmaceutical company, you’re hoping for the best. You’re hoping that you’re getting the drug and not the placebo. You’re hoping that it’s working, but the statistics are that you might not get the medicine, and chances are the drug might not be effective. It’s very difficult not to be hopeful, and not to notice the slightest improvement and think, “Oh, my goodness, it’s working!”
Feeling called to service
So why do I put myself through this? You have to shift perspective, like Wonder Woman, who carried the weight of her superpowers. All of us in this community have a gift, which is that we have FSHD. There are a lot of ways that each of us can change the world. You can do it through work. You can volunteer for a political campaign. You can volunteer in a soup kitchen. You can become a social worker. There are a lot of ways to help people, but we are uniquely suited to help cure FSH muscular dystrophy. My DNA says I can volunteer to be someone who changes the course of this disease for generations to come.
I feel like I’m called to service. So those super-long days, instead of grousing that I’ve been here since nine o’clock, I think of it as I’m donating my time today. I’m donating my time to cure FSHD. It might not feel that way when you’re in clinic wearing two masks and a face shield, but that’s what you’re doing. When you’re feeling sorry for yourself that the six-minute walk test is harder this year than it was last year, what you’re doing is helping researchers learn that this is how this disease is progressing for this person and maybe other people, and that’s data they desperately need.
Like Wonder Woman, sometimes you have to tough it out. Helping to cure FSHD is a great reason to be sore the next day. I’m not saying living with FSHD is easy. I get sad about it all the time, but when I look at those surveys, I also think about how strong I am, and how I can overcome my challenges. I also think how much of the negativity is internalized ableism. While we all want a cure, a lot of the bad things that we feel about ourselves are internalized biases against disabled people.
Clinical trial survival tips
Having quite a few studies under my belt, I have come up with some survival tips if you decide to volunteer for a clinical study or trial:
• Bring a loved one, someone with whom to crack jokes and share this adventure.
• Make sure all batteries (wheelchair, phone, iPad) are fully charged. If you think you might need a change of clothes, pack some.
• Don’t check your work email. Be in the bubble of volunteering.
• Bring some entertainment. I like to mindlessly scroll Twitter and Instagram. Bring an e-book or audiobook or movie.
• Pack a ton of snacks. I pack decadent snacks that I wouldn’t usually have at home, like chocolate-covered pretzels. It adds a bit of flair to the day.
• Make an inspirational playlist. I play Lizzo loud in my earbuds to get through the six-minute walk.
• After your clinical trial day, give yourself a reward, because you just did something amazing for the community!