Laura Adams, member of the St. Louis Chapter, shares how embracing the FSHD Community enriched their family
The Value of Community
I know you can inherit the flawed gene that causes FSHD, and sometimes it just shows up with no genetic familial precedent. None of us likes to think that we’ve passed on anything that will make life more difficult for our offspring. In my case, I did pass it on. My daughter found out before I did that our various physical quirks had a name and rare disease designation. We became a community of two. My community has expanded since then.
The feeling of devastation that you get when you hear a diagnosis like “muscular dystrophy” is unforgettable. For my daughter, Chelsea, it happened in a five-minute consultation with a specialist at Boston Brigham & Women’s. Everything that lead up to that took place over two years, from one specialist to another until one of them finally said, “There has to be some systemic reason for all these seemingly unrelated symptoms. I don’t know what it is, but I know where to send you next.”
Her call to me from Boston that day was so sad. At age 29, to be told that she had a degenerative disease for which there was no treatment or cure, was just about impossible to wrap her head around. And so we began our journey, hundreds of miles apart, through the seven stages of grief together.
Even though we had each other, it was a lonely go at first. When she was 29, I was 57. Her anger and frustrations were completely understandable. I felt a lot of sadness that she would have to bear this burden of uncertainty. She was building a career and fashioning the adult life she wanted to live. It would take a lot of fortitude to forge ahead with the unpredictable menace of FSHD stalking her.
If you’re reading this, you most likely have FSHD or someone you care about does. We all have these stories –– how and when we found out, who we told and what their reaction was, and how adjusting to the reality changed us. As unique as each of us is, our stories have lots in common.
Chelsea and I both resisted becoming part of the larger FSHD community at first. That would mean we had a disability, wouldn’t it? And then we felt bad about not wanting to be included with people whose disease progression might well be ours somewhere out in the future. Would our disability one day be writ large when anyone looked at us?
So when an email landed in my inbox inviting me to join the newly forming St. Louis Chapter of the FSHD Society, I was curious but not enthusiastic. I didn’t attend that inaugural meeting, but by the time the next notice came, I knew the featured speaker, Dr. Jeffrey Statland, so my husband and I rsvp’d that we would attend.
Did that meeting win me over and change all my misgivings about immersing myself in my new community? No, it didn’t. But my gratitude for the people advocating on my behalf impressed me. After that informational meeting, there was a meeting in a park for FSHD Awareness Day. Only a handful of people were there, just enough so I could lock in some names and faces. When I volunteered to help with the first Walk & Roll fundraiser, the interaction with two other FSHers and our chapter leader was so positive. The event was just what those events are: They affirm your faith in how good and generous and kind people can be. Those of us who showed up and brought our “teams” of supporters were moved to feel supported by people who just wanted us to know they were there for us.
My little community that began with Chelsea (who remains my confidante on all things FSHD, and lots of others) has grown to include the people I’ve worked with in the St. Louis Chapter. It includes the many medical professionals I’ve seen in the course of a natural history study (ReSOLVE) and a clinical trial. It includes the friends and family with whom I’ve shared my diagnosis. I am fortunate that it includes a quietly, and constantly, supportive spouse.
Chelsea has started a blog, honestlyFSHD.wordpress.com, to speak candidly about her journey. She welcomes subscribers.
Most people have some adversity to deal with. Ours is FSHD. If it’s yours too, please consider joining the community through the local chapter. We’ll be happy to welcome you.