In 2011 I was running towards my goal of 5 full marathons and 10 half marathons by the time I turned 55. I had already completed 3 full marathons and 2 half marathons including my first multi-race event – the Goofy Race and a Half Challenge, a half marathon on the first day followed by a full marathon on the second day. I was training for PF Chang’s Marathon in Phoenix with Team in Training when I noticed that my feet and legs felt weird – tingly, like they were asleep. I went to my doctor and she explained that I was experiencing neuropathy. She couldn’t figure out why so she told me to go see a neurologist. I was more focused on training for my race and thought that I could deal with it later. I was still able to run, even though I felt odd. Then one day at a group training run, I went to run the warm-up lap and my legs were paralyzed and would not move. This happened a few more times before I decided that seeing the neurologist, Dr. T, would be a good idea.
Dr. T sent me for an MRI of my spine and brain, which showed that the myelin sheath on the spinal cord was inflamed in one spot. To get a more conclusive diagnosis, I needed more invasive tests but race day was less than 2 weeks away. If I did the tests then, I couldn’t run the race. I was not willing to skip the race so I postponed the tests until I returned.
My Team in Training coaches knew about the problems I was having with occasional paralysis when I would start running. I think they were as nervous as me on race day. None of us knew whether I would be able to make it through the first mile. Rich, one of the coaches, came with me to my starting corral then walked out to the first mile marker to wait for me. When the race started, I took a deep breath and hoped for the best. I got through the first mile with no problems and flashed Rich a big thumbs up as I went by. I kept running. Dr. T told me to carry meds that I could take if the paralysis came back during the race. I was happy that I never needed them.
The best part of the race was when I saw my friends, John and Marsha, waiting for me at Mile 18. There is a rule for marathon runners – don’t try anything new on race day. At the water stops they were handing out water and Cytomax. I had never used Cytomax during any of my training runs and didn’t know if it would agree with me. Rather than risk it, I had given Gatorade to John and Marsha to hand to me so I could refill the bottles I was carrying. I remember seeing them sitting in their lawn chairs with their two Border Terriers. God bless them for sitting out in the hot sun waiting for me. Although I was a sweaty mess when I saw them, I gave Marsha a big hug. It was just the kind of support I needed to make it through the rest of the race.
When I got back, I finished the rest of the tests. The diagnosis was Transverse Myelitis (TM), an inflammation of the spinal cord, which targets the myelin sheath – insulating material covering the nerves. It is a bit like having a frayed electrical wire. I had done some analysis and discovered that I had bouts of paralysis following my allergy shots. I stopped getting those and no more paralysis. I am very fortunate. There are many TM patients who are in wheelchairs and/or experience pain. Running is something that they can no longer do.
Initially Dr. T was not supportive of my running. He told me to resume running slowly. He made me feel like I was a china doll. After everything that I had been through, I was uncomfortable heading back out to run. I joined a running group and was the slowest one in the group. Then my husband and I signed up for the Great Alaskan Marathon cruise with John Bingham and Jenny Hadfield. The cruise was a staged marathon, running on the ship, and on land in Juneau, Sitka, and Ketchikan. Over the course of a week, I ran up and down mountains, and through forests. It was just the thing I needed to regain my strength and confidence that I could run. When I got back from the trip, I was no longer bringing up the rear in the running group. I was frequently up front. I started entering races again; I had a goal to work on! At each of my check-ups, when Dr. T would ask me how I was doing, I would pull out the medals from my races to show him what I had run since I last saw him. In one 6 week period I ran 3 half marathons – just a bit excessive. I was able to reach my 5 full/10 half marathon goal with 6 months to spare.
Last summer we learned that I developed another lesion on my spinal cord. Both Dr. T and I were surprised by this news. I had gone back to work, a sedentary desk job. Lack of exercise is bad for someone with TM and I think that contributed to the development of this new lesion. Everything that I have read says that exercise is critical to maintaining the health of TM patients. At this point Dr. T told me to run every race I want to run. My new goal is to run a marathon on each of the 7 continents. I might not be able to hit all 7; Africa might be a problem because the immunizations that I would need to go there could trigger a return of the paralysis I experienced. I will be running the Berlin Marathon this year and the Tokyo Marathon next year. Antarctica is lined up for 2017. I will also continue to work on running a half or full marathon in each of the 50 states. I have completed races in 14 states so far. It is a fun way to visit a new place.
Whenever I meet someone who says that they could never run, I tell them that if I can run, anyone can. I went from being a 40-something couch potato to a funatical runner in just a few short years. I have told my friend Marnie that I wish that she didn’t have to get lymphoma for me to figure out that I could be the runner that Grete Waitz and Joan Benoit inspired me to be. I am not sure if TM will let me keep running but I am not stopping now!