On September 4th, 2013, I received a life-changing MRI diagnosis: acute cerebellar atrophy, a progressive and incurable brain disease.

Embracing Life with Cerebellar Atrophy

Initially, the news was overwhelming, but I gradually transformed my fear into acceptance. I now celebrate Diagnosis Day as a day of reflection and appreciation rather than despair. Each year, I mark the occasion by baking a cake, writing, exercising, enjoying my favorite music, reading pages from my favorite books, and spending time with my family.

This celebration is my personal way of turning a potentially difficult day into a reaffirmation of life. Of love.

Like a birthday, Diagnosis Day serves as a moment to reflect on my journey and be thankful for the life I have. For the present moment.

As I celebrate the 11th anniversary of my diagnosis, I wonder: Is living with a chronic illness for 11 years an achievement? Should I reward myself with a gift, like a new watch or a stainless steel steak knife?

Lessons from Seneca: The Gift of Misfortune

The ancient Greek philosopher Seneca once said, “It’s unfortunate that some people have never lived through misfortune.”

I think about this a lot. While, I assume, we’d all sign up for a life with less adversity, Seneca’s perspective highlights a profound truth: misfortune offers valuable insights and growth opportunities. Despite his own trials, including imprisonment and exile, Seneca understood that suffering can lead to resilience and personal development.

Damn it, Seneca.

Finding Balance and Growth Through Adversity

During times of suffering, time often feels unpredictable—either rushing past or dragging on interminably. It can be challenging to maintain balance amidst such turmoil, as we may find ourselves fixating on the past or anxiously anticipating the future.

I don’t live with the delusion that a cure for my disease will be discovered anytime soon. I’ve learned that focusing on the present moment and taking life one step at a time is crucial for both daily survival and daily sanity.

And honestly, it’s hard to dwell on worries when you’re enjoying a slice of cake.

Embracing My Current Self

In the forefront of today’s reflection, I am surrounded by the lingering shadows of my past selves: the teacher, the athlete, the speaker, the husband and father who once rode bikes, threw baseballs, and climbed ladders to change lightbulbs. These ghosts of my former identity sometimes creep into my thoughts, preying on my insecurities and fears, haunting me with what once was. And their spirits of tension and doubt and sadness disable me.

Yet, it is only when I brave up the courage to confront these spectral reminders that I am able to find, to seek the joy-filled present life. That I am able to make some sense of my diagnosis. Only by confronting these ghosts, am I able to stand firm and unafraid. I am able to look beyond them, transcending the nostalgia and regret, and fully embrace the infinite now. I am able to recognize and appreciate the richness of my current life and all that is good within it.

When I fully engage with the present, I am able

Scenes from another year with ataxia:

Below is one of my favorite pictures ever. My friend Deb Dauer sent this to me in September of 2017 after reading how I bake a cake to celebrate my worst day.

Rest easy my friend.

Be well,

Jay

Are you writer? Are you looking for writing advice or writing tactics that you can help guide you on your writing journey?

One, Line, One Love: Episode 34: A Creative Conversation Between Two Everyday Writers

In this episode of “One Line, One Love,” Gail and Jay explore a thought-provoking line from Dani Shapiro’s book Still Writing. Shapiro contends that writing reaches its peak when the writer embraces uncertainty, stating, “I’m wary of those times I think I know what I am doing.” Gail and Jay reflect on their own experiences with navigating uncertainty in their writing, discussing how this inherent tension can be essential for creative growth. If you’re a writer grappling with uncertainty, this episode is a must-listen!

Book Sale Link

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Warm greetings to everyone who found me on the University of Pennsylvania’s Ataxia Clinic’s website! Thanks for stopping by. I have ataxia and though I’m not a doctor, I hope my words comfort, encourage, empower, and serve as good company on your journey.

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Jay Armstrong is a speaker and an award-winning author. Despite being diagnosed with a rare neurological disease, that impairs his movement, balance, eyesight, and speech–Jay presses on. The leader of the Philadelphia Ataxia Support Group, he hopes to help you find joy, peace, and meaning in life.