‘Matter of Time’ documentary reminds me it’s all about community

Last Monday night, as my husband, Dave, left for a weekly meeting, I tearfully wished him well. He looked at me, baffled. The cause of my tears? I had decided to watch the newly released “Matter of Time” documentary on Netflix, which features Pearl Jam frontman Eddie Vedder and a rare disease. I wasn’t going to miss it.

Don’t worry. Dave knew I was movie-crying before he left for his meeting.

I knew I would cry. Seeing any rare condition represented in the media is incredibly affirming for me, as it is for many of us in the rare disease community.

My tears started about five minutes into the film. While the featured disease was epidermolysis bullosa (EB), a rare skin disorder, I could identify with many of the patients’ struggles as someone with Friedreich’s ataxia (FA). One similarity that resonated with me immediately was the strength, resilience, and tenacity I saw in the EB community. Those traits are also present in the FA community.

Recommended Reading

June 3, 2024 Columns by Jean Walsh

I crave more on-screen disability, rare disease representation

Community is essential

The EB family members featured in the film said things like, “It is so important to me to be with friends who understand what we are going through.” I can’t tell you how many times I’ve heard this sentiment at FA events.

Further, based on the documentary and my own experience, both communities are grateful for and need online connections. With a rare disease, it can be hard to find others with the same condition who live close to you. Still, connecting with your online community in person is irreplaceable.

Our society in the U.S. has long emphasized individualism, but people with rare diseases know we’d never make it without our community. From choosing the best adaptive clothing to finding treatments and a cure, we need one another. The Friedreich’s Ataxia Research Alliance motto is “Together we will cure FA.” FA leaders have always welcomed everyone, from patients to donors (of any size) and researchers, because we need all the support we can get.

I’m sure Vedder was a big draw for making this film. As a longtime EB advocate, he was featured — but the EB community was the real star. I love Vedder and Pearl Jam, but I was so grateful they weren’t front and center.

Thinking about the FA and broader rare disease communities through the lens of “Matter of Time” felt like a great way to kick off Rare Disease Month. I give this film two thumbs up.

By the time Dave got home from his meeting, I was watching a sitcom to lighten my mood, but “Matter of Time” will be with me for a long time.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.