Jane – Rochester, NY

Jane – Rochester, NY

I had a goal. My goal was to run long enough to win a race in my age group. I figured that would mean I’d be running well into my 70’s. And actually the goal started one day when I was out running. I ran into a woman I had never seen running before in my neighborhood. She was older and this drew me to her like a moth to the light. I ran up next to her and started talking to her. She told me she had run when she was younger but had stopped for the last decade, and when she turned 70 she decided to take the sport back up. She told me how she had run in a race and won in her age group! It was at that moment I knew I had something wonderful to look forward to as I got older. Plus I had this really cool streak going, I had not taken a day off from running in a couple of years. I considered myself like a postman – nothing could keep me from running. I belonged to a gym but running outside was my passion. It didn’t matter how much snow was on the ground. It didn’t matter how cold it was. Me, up against nature and I was winning. I ran everywhere I went. And yes, I was proud of myself. I was tough! I wasn’t just a fair weather runner. Another part of my running I was proud of was how many different places I had run. Oh, you would laugh if I told you the places I ran. I ran in the airport parking lot in Jacksonville, Florida when I had a long layover once. I ran stairs in hotels. I ran in Europe. I ran on cruise ships. I ran in places no one should ever run but I was tough both physically and mentally and I was going to run through anything and anywhere to prove it.

Running was up there with being a mom. If someone asked me how to identify myself I would have said being a mom first and probably a runner second. I don’t think I would have known that, though, until it was taken from me. I wasn’t the only one, however, who identified me as a runner. I would see people in all different places. Once I was in Wegmans and someone asked me – aren’t you the person who runs on the canal? And once I got on a plane and someone asked me if I was a runner they had seen. I was famous –or at least, that is what it felt like for me.

I have to laugh when I think about the origin of my becoming a runner. I was in law school living in California. Law school and moving to California was hard on me and I needed a place to let my hair down, a place to lose myself, a place to let my stress ease out of my body. So one day, I put on my running shoes and never looked back.

At first, I thought I was running so I could eat extra chocolate chip cookies or ice cream. I used to joke with myself, I was like the dog on the track chasing the rabbit except I didn’t want a rabbit I wanted chocolate! Then after running about six years, I realized I was running for me. I was running to protect myself. Running was a place special for me. While I at times ran with others, I often found it a place I could let my mind wander and wish and dream.

Running was my home when I was going through a bad marriage. Running was my social life as I met many friends while running. Running was a place that helped ease my grief when I lost both of my parents.

Then one day something started going wrong. After about a half a mile, my foot wasn’t picking up off of the road when I was running. Why was my foot dragging? I was sure that it was my new sneakers. Or maybe the road had too many potholes? I wasn’t in any pain – at least no more than normal.

Off first to my internists. Nothing. Off to an orthopedic doctor. X-rays, MRI’s. Nothing. Off to a physical therapist. I forgot how to walk, he told me. What? How does someone forget to walk? Now, I stop walking in front of people. I walk holding onto counters so no one can see me walk. But I can’t fool my brother. He sends me to a friend of his who is a chiropractor. Neurological. Off to a neurologist. You have ALS. Get a wheelchair. Get your affairs in order. You only have three to five years left. Tell your three children. Hug your husband closer every night when you go to sleep. Put your bucket list together. Second opinion with an ALS specialist. No you don’t have ALS, you have a movement disorder. What? Off to a new neurologist. DYSTONIA. You have Dystonia. A new chapter of the story begins.

I meet with my new neurologist and he suggests I try Botox and lots of different prescriptions. First, I try a drug that not only leaves me in a fog but starts to take away my memory. I can’t remember words. But I think I am walking better. Now what do I do? Do I lose my mind with my memory or do I walk? But I am not even sure if I am walking better. So I go off the medicine and try another one. I am not walking as well but I feel better. Maybe walking is overrated anyhow. I can’t drive so why do I need to walk?

My doctor is leaving Rochester and somehow I find a new doctor. But she isn’t just a doctor. She is an angel with magic. She finds the spot and shoots in the Botox and lo and behold I can walk. I can drive. I have been able to hike, ride a bike and even climb mountains. Is it easy? No. Some days are harder than others. Somedays my leg still feels like a wooden leg I have to drag around. But am I grateful? Yes, everyday of my life. I am lucky. I only have focal dystonia. It is only in one leg. And 25 years of running? Not too shabby at all.

But I guess I’ll always wish I had 25 more years.