You were diagnosed five years ago. What were your initial symptoms?
I lost my sense of smell, my hearing began to fade, and I developed ringing in my ears. I saw a neurologist in Wilmington, NC, who did an MRI and suspected I had superficial siderosis [a condition due to iron overload on the surface of the brain; the iron is from red blood cells that leak into the spinal fluid]. He sent me to an expert in Chapel Hill, who showed me my MRI and pointed to a black line around my cerebellum [the area at the back of the brain that controls almost all movements, including eyes and vision] and said it reflected iron deposits from blood that had leaked into my brain. This condition is very rare.

You ended up having surgery at Mayo Clinic in Rochester, MN. How was that?
It was longer and more complicated than the surgeons anticipated, but they found the leak in my dura [the outermost of the three membranes that cover the brain and spinal cord] and sewed it up. Within five days I was up and walking, but my recovery has been slow, and I now have very bad balance. But without the operation, I would have gone deaf and might have died.

One of the risk factors for the condition is trauma to the brain. Was that true for you?
I was a highspeed water and snow skier and had several serious accidents. When you land on water at a high speed, it's like hitting concrete. One of my falls while skiing was so bad it was like an explosion. The falls may have been severe enough to damage my spine and cause a leak in the dura.

How has your life changed since your diagnosis?
I had to retire and close my business, but my two grown children have been extremely helpful. Some of my friends have rallied around, and my faith keeps me going. The surgeons at Mayo Clinic said I was the most positive person with superficial siderosis they had ever operated on.

In what ways do you stay positive?
I try not to dwell on my situation. I watch documentaries—I love Ken Burns—and I read. I grow vegetables and flowers in pots in the courtyard where I live. I try to remain independent, so I do my own shopping using an electric cart. I also log on to livingwithss.com, a website for people with this condition. One of my goals is to tell the world about superficial siderosis. The more people who know about it, the more people who will be diagnosed and the more lives that will be saved.

You now live with your mother, who is 93. Tell us about that.
My mother is a sweetheart. She takes care of me, and I take care of her. I put her to bed every night and tuck her in. She massages my back around where the operation was. We're both making the best of a difficult situation.