People Who Suffer Shine the Brightest Lights (Friedreich’s Ataxia Symposium 2023 Reflections)

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Last weekend, I attended the Friedreich’s Ataxia symposium in Philadelphia, PA for the first time since before the pandemic. My dad and boyfriend came for physical and moral support.

The event line-up hasn’t changed in a while. (Click to read about the 2019 symposium.)

The weekend began Sunday with a rideATAXIA fundraiser, followed by a meet & greet session that evening, and then the conference lasted all day Monday.

At the ride, over $400,000 was raised for FA research. A memory popped up on my Facebook page that mentioned $215,000 raised at this event in 2014. I hope this indicates that our fundraisers are becoming more and more successful with time, as people get used to donating each year and FA awareness spreads.

I caught up with old friends and met new ones at each event including the meet & greet session. This year, we met a couple from LA. Since we live in NC, my dad’s originally from AR, and my boyfriend’s originally from GA, we all had twangy accents and a preference for warm weather in common. We also met a nice guy who lived five minutes down the road and had another type of ataxia.

Back at the ride, we met a couple from CA. The woman, Jennifer Gasner, wrote a book about her life with FA, available here. Obviously, this idea is aspirational for me. I bought it and will be taking notes. 🙂

At the conference, we learned a lot! First up is always basic info about FA. Many of us know it already, but people who are new to the FA community need the education.

We heard from scientists and pharmaceutical reps about treatments in the pipeline, which is hard to comprehend as a layman but definitely encouraging. There were also a couple of sessions with FA panelists discussing accommodations and mental wellness.

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One sentiment struck me this year: the people who suffer the most often shine the brightest lights in the world.

Many people, with FA or just in general, are bitter and depressed. I can be judgmental, especially if the one complaining has it better than others. God forgive me – I know it’s wrong to think that way.

Some people have a chemical imbalance in their brains. Some people lack community and/or a support network. Some people can carry a heavier burden than others. Some people don’t have hobbies, a pet and/or something that brings them joy. Those things make all the difference in the world.

I attribute my own upbeat attitude to good mental health – which is, firstly, thanks to not having a mental illness (which is still an illness, not a personal failing).

My mental health is further boosted by my Christian faith, awesome family and friends, being part of communities like my church family and United Women in Faith, exercising religiously, and hobbies/things that bring me joy, including writing, caring for my houseplants, strolls in the park, indulging my feminine energy (hair, nails, jewelry, etc.), listening to music, and more.

I also seem naturally able to carry a heavy burden. FA gets me down temporarily but never permanently.

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One of my FA friends is a bright light.

She has difficulty seeing and speaking, and I’m not sure about her hearing, but her dad told me to get close to her ear and say my name loudly so she would know who I was. [We were outdoors on a windy day, so I also had a hard time hearing.]

As I spoke with her, she didn’t verbally respond; I just kept rubbing her arm as I talked, knowing she could interpret that sign of affection, even if we couldn’t conversate.

She has always been so beautiful and sweet. I’ve never seen her with a frown on her face.

The man with another ataxia from the meet & greet was a bright light. He also didn’t or couldn’t speak (?), so he went around in his walker with a phone strapped to his arm to type messages.

Yet, he had the biggest smile on his face every time I saw him. His messages always had an excited, happy tone, such as “Hope you have a wonderful amazing splendid evening!!”

Not related to FA, but I’m also reminded of my little cousin who fought leukemia for several years before tragically passing away. She was a bright light who radiated positivity. Her cheeks were a little gaunt from the cancer, so when she smiled, her teeth took up her whole face.

My boyfriend says I have a huge smile, too; apparently, I kinda resemble the Cheshire cat from Alice in Wonderland. Sounds like a compliment to me.

If only we all had a smile so big and bright that it shined a light into life’s darkness.

We would like to thank Lily for sharing this inspirational story with us.  Please share your thoughts and/or comments on this or any other article.  And if you would like to get involved and share your experience with Ataxia, please get in contact with us and join our community today.  A place where we empower you to build a healthy lifestyle and raise overdue Ataxia Awareness.  Experience transformative storytelling and share your story to inspire positive change.


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