Shannon

For years, I brushed off the dizziness, fatigue, and the way my feet sometimes seemed to have minds of their own. I’d trip over nothing, bump into door frames, and occasionally lose my balance mid-step. Friends would laugh and call me “graceful as ever,” and I’d laugh with them — but deep down, I knew something wasn’t right.

After a car accident a few years ago left me with a traumatic brain injury, the unsteadiness got worse. My speech would slur when I was tired, my vision blurred at times, and I began to notice that my coordination wasn’t just off — it was changing. I told myself it was from the accident. I told myself it was stress. But eventually, the signs became too loud to ignore.

This fall, after a long series of neurological exams, MRIs, and genetic testing, I finally got my answer: Spinocerebellar Ataxia, a rare degenerative disorder that affects balance and coordination. My neurologist narrowed it down to type 6 or type 27B — both forms that slowly affect the cerebellum, the part of the brain that controls movement. It’s a mouthful of a name for something that, in plain English, means my brain’s control center doesn’t communicate perfectly with my body anymore.

Some days are good, some are harder. Cold weather makes me stiff and dizzy, and I’ve learned that even a simple heating pad can make a world of difference — relaxing tight muscles, improving circulation, and calming my nervous system when it starts to spin. Getting this diagnosis has been a mix of relief and grief. Relief in finally knowing what’s happening. Grief in realizing it’s something that won’t just “go away.”

But knowledge is power. This condition doesn’t define me — it helps me understand myself. For anyone who’s been dismissed as “clumsy” or “just tired,” I want you to know that your body’s signals matter. Keep asking questions. Keep pushing for answers.

My husband — a 100% disabled Air Force veteran — has been my rock through all of this. We’ve learned that while the VA has incredible programs for veterans and their caregivers, spouses like me who need care fall into a gray area. So we’re figuring it out together, one day at a time, leaning on love, humor, and a whole lot of patience. Spinocerebellar Ataxia doesn’t take away my joy or my purpose. It just means I move through the world a little differently now — slower, more intentional, more grateful. If my story helps even one person feel less alone, then it’s worth sharing.