I want to tell you two things…
I want to tell you two things…
First, The National Ataxia Foundation recently named yours truly the Ataxia Ambassador of Philadelphia.
My responsibilities include organizing support group meetings, contacting local ataxia experts, and raising ataxia awareness in the Philadelphia/South New Jersey region.
This a great honor. I’m excited and privileged to help raise ataxia awareness and support patients and their caregivers.
With that–I want to thank you guys for listening to my ataxia stories.
Ataxia is a rare, degenerative disease that both physically and emotionally impairs you. Since there is no cure, the goal of ataxia treatment is to improve the quality of life.
Improve the quality of life?
Yes, I have done and continue to do physical therapy, I have changed my diet, I have curbed some physical activities but writing, especially to you, has had the biggest improvement on my quality of life.
Having a rare disease is hard. Hell, being human is hard. But to discover a place and medium to express yourself and find genuine people who will listen and empathize with your story is empowering.
If writing gives me strength than your reading gives me hope.
The friend I was telling you about, the one with the bad stuff, was surprised how powerful writing can be. The word they used was “freeing”.
And I couldn’t agree more.
Learning to tell your story is scary business. You’re afraid two things will happen:
- nobody will listen
- you will be misunderstood
And this is why so many people, even those not afflicted with a neurological disease, suffer in silence.
And I hope the things I write help you, in some way, to tell your own story.
Second, I also want to tell you is my nonfiction story, “The Day I Learned I Could No Longer Jump” was accepted by The Coachella Review for publication. This is pretty cool since it’s an intimate story (and the first one I wrote) about the frustration, fear, and loneliness of living with ataxia.
My ataxia hatched 6 years ago. I know one other person who has it and we’ve spoken on the phone twice. He has twin boys in high school, wrestlers. He no longer works. He is collects disability.
The things that make us unique are the things we often hide.
There’s a human desire to go unnoticed, to fit in. Maybe it’s a survival technique, maybe it’s the lingering tassels of high school, but communicating what we feel, instead of what we think, always leaves us vulnerable to hazing, no matter how old we are.
Yet–if we want to grow and harvest love and get happy we need to find a way tell our story. And it doesn’t have to be a blog or a book, but simply telling someone you love and trust the story of you.
Call me biased, but I believe telling our story is more natural than not telling it. Sure some people won’t care. That’s their problem. Not yours.
Stories can heal.
And people benefit from sharing their stories. Storytelling can be powerful for medicine for both the storyteller and the listener. We’re all experts in our own lives, both the good and the bad, and we all have something to share with people and trust me, people are desperate for stories.
One thing I’ve learned since starting Write on Fight on is the importance of sharing your story. It’s not so much the act of writing it down, but knowing your story will be experienced by others and how others might be comforted or inspired by your story is one powerful way to improve your quality of life.
If you liked this post, check out: A friend visits and teaches me about gratitude
My friend clears their throat and talks about their darkest night.
“Though I was alone, I saw the people I love. Like they were there with me, waving their hands,urging me to get help.”
My friend talks about not just naming things you’re grateful for, but seeing them– drawing pictures in your mind.
My friend takes a breath, finds courage, and continues describing the people they are grateful for. I can feel their gratitude they way you can feel your child’s pain. Blood mixed with blood, a shared human ache.
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