Living with Superficial Siderosis: Steve Grinstead’s Story

For Steve Grinstead, life took a sharp, unexpected turn in 2016. What started as an elusive health issue became a harrowing medical journey, one that would test his resolve, redefine his perspective, and challenge his body in ways he never imagined.

The Diagnosis

In 2016, Steve was diagnosed with superficial siderosis (SS), a rare neurological condition caused by chronic bleeding into the central nervous system. Iron deposits formed as the blood broke down, embedding themselves in his cerebellum and other parts of his nervous system. This caused irreversible damage over time. The symptoms were relentless—balance issues, hearing loss, and double vision were just the beginning.

By 2017, the Mayo Clinic in Minnesota became a beacon of hope. After careful analysis, doctors identified the source of the bleeding: a tiny, elusive 5/16-inch hole in the dura, the protective membrane around the spinal cord. Fixing it required an intricate and grueling operation.

The Surgery

Steve lay on the operating table for eight hours as a team of skilled surgeons worked on his spine. They cut into five of his vertebrae, removing portions of bone that would never be replaced. A 10-inch incision traced down his back as the surgeons meticulously searched for the source of the bleed. It wasn’t a straightforward discovery—they had to dig deep, carefully navigating delicate structures. Finally, they found it. The hole was sewn shut.

The surgery was a success in one sense: the bleeding stopped. But this wasn’t a cure. The damage caused by years of iron deposits in his central nervous system, especially his cerebellum, was permanent. The iron remained, and so did SS.

More Battles

As if living with SS weren’t enough, Steve was dealt another blow. Around the same time, he developed heart disease and cancer. These two battles demanded their own interventions—extensive operations and grueling treatments. Miraculously, he overcame them, bringing both conditions under control for now. But SS remained an ever-present shadow, an ongoing reminder of the fight he couldn’t yet win.

Recovery and Challenges

After months of recovery from his spine surgery, Steve felt ready to reclaim his life. One day, he climbed back onto his tractor, determined to resume the work that once brought him joy and purpose. It was a mistake. His body wasn’t ready for the strain.

What had once been routine now left him struggling. To his dismay, new challenges emerged. He began experiencing double vision, a cruel twist that SS added to his growing list of symptoms. Fortunately, specially designed glasses corrected his vision enough to allow him to drive, granting him a precious slice of independence.

“SS is bad, but it ain’t all bad,” Steve says with a wry smile.

A Changed Life

Life now moves at a different pace for Steve. He spends much of his time in a wheelchair, a stark contrast to the active life he once led. He’s had to let go of things he once took for granted—mobility, strength, and the freedom to do whatever he pleased. Yet, in the face of loss, Steve has chosen not to lose himself.

His optimism remains unshaken. “Although I was really something,” he reflects, “and now I am in a wheelchair, and now I have lost everything…life is still good. Life is still worth living.”

A Positive Outlook

Superficial siderosis hasn’t beaten Steve. Though the condition remains incurable and relentless, he finds joy in small victories—like driving with his glasses—and treasures the simple pleasures life still offers. His story is a testament to the resilience of the human spirit, proving that even in the face of immense challenges, a positive attitude can illuminate the darkest paths.

---

Steve’s journey, detailed in the April/May issue of *Brain and Life* magazine, continues to inspire others. His unyielding determination reminds us all to find strength in adversity and appreciate the moments that make life worth living.