WriteOnFightOn Other Humbled and Honored to Share My Story

Humbled and Honored to Share My Story



My story “How to Cross a Threshold” was recently published in the quarterly publication “Generations.”

“Generations” is published by the National Ataxia Foundation providing news, research and stories regarding ataxia.

The National Ataxia Foundation defines ataxia as, “a degenerative disease of the nervous system. Many symptoms of Ataxia can mimic those of being drunk – slurred speech, stumbling, falling, and incoordination. All are related to degeneration of the part of the brain, called the cerebellum, that is responsible for coordinating movement.”

I have ataxia.

Specifically, I have sporadic ataxia.  A disease that affects 1 in 100,000 people.

It’s considered “sporadic” because there is no evidence that I inherited the disease. The term also refers to also refers to changes in the structures of that result from the loss of brain cells.  

Sporadic ataxia symptoms usually worsens overtime. Making it difficult for the patient to walk, talk, dress, eat, and write.

I was diagnosed with sporadic ataxia when I was 33. I’m 38 now.

There are moments when I feel fine. When my movements are smooth and natural. But then there are moments when I feel like I’m falling or I’m drunk. Moments while I’m walking I have to think about walking. Moments when I’m afraid to move. Moments when I feel incredibly alone.

But then I sit down and write a story.  And send it to the world. And people read it and someone finds comfort in my words. And I feel strong again.

And I don’t feel so alone anymore.

Be well,

Jay