I have lived with lupus most of my life, and on the 8th Anniversary of my MS diagnosis, I ran the JFK 50 miler. I wouldn’t have considered running if my coach, business partner, and friend had not tricked me into training. I would not have survived the run without her.
The training was brutal! I had to train my body to do things that weren’t natural for me. Eating sugar again and eating sugar while running was a shock to my system. It was challenging but thanks to great public bathrooms, I survived. Running multiple times in a day and giving up on having good hair was tough, but in the end my legs could run two marathons in 48 hours without any side effects(except bad hair). My training plan was so good that I was over confident at the start line. It only took 6 hours of running the JFK 50 miler for me to begin to question my ability complete 50 miles in one day.
It was a difficult course that brought me through the Appalachian Trail for miles with blood soaked stones and runners with broken bones. Falling was common and a just a little scary for someone with MS. I felt like I should where a t-shirt that said, “You have no idea.” I kept thinking that it was irresponsible for someone with a balance issue to navigate this trail but I survived. I remember another runner saying, “You won’t win the race here but you could lose it.” Her words were in my head for miles and I made up the time on the flats.
The entire run was filled with pain, joy, and lessons.
The course is known for its support and I was not disappointed. Food, gatorade, water, Christmas cookies and even Santa was available. The volunteers and runners were the best part! The veteran runners loved offering advice and when you have endless miles to run any guidance is welcomed. People only wanted to finish and no one seemed to care about their time. I discovered that runners considered their past attempts as opportunities to learn and never failures. These veterans had great advice about slowing down and enjoying the experience and views.
And, then there were times that I was alone for a long periods and lived off the messages and supportive words I received before the run. I had a hard time falling asleep the night before because my phone kept alerting me to the flood of support.
Every once in awhile a medic on bike would ride past me with more words of encouragement like, “You are looking better than most of the people.” I started to get concerned for most of the people and questioned the logic of running this type of race. But, I also wondered how they knew just what to say to keep me going. Being reminded that I wasn’t alone in my pain and suffering gave me some weird type of solace. When things got really bad I thought of my daughter who reminded me to stop if my health was in jeopardy and weighed that against my desire to finish. I kept checking my body for any noticeable signs but felt strong.
Just like life you can prepare as much as you want but in reality it is in the moment that we learn how to run the race. The last 30 miles were tough and most runners would run/walk which lead to this amazing game of leapfrog. You would pass a struggling walker who would pass you in just a few feet. I would spend hours with the same people getting to know them at their most vulnerable moments which lead to a contest of supportive of words. “You are doing awesome.” “You are crushing it.” “Where are you from?” “You are probably a very fast marathon runner.” “Those are really short shorts, you must be freezing, but I am impressed.” “Please go ahead of me and run like the gazelle you are.” For a compliment hoar like me it was truly heavenly. I love giving as much as receiving when it comes to encouragement and this was a love fest for my type of people. Apparently, people who lacked the common sense to not sign up for a 50 miler were my people. I desperately wanted these strangers to cross the finish line.
In the end I finished in a respectable time. I received a medal that will be one of my proudest medals. I called my husband immediately to thank him for the years of support and quickly went to the medical tent. As soon as I listed my medical history I had every medical professional in the facility hovering around my cot. I always have to manage my chronic diseases but Dr. Google didn’t have any research articles of what to expect after running 50 miles with lupus and MS. I agreed to an ambulance ride because my daughters words were in my head.
The paramedics and intake nurse were fascinated with my disease management and had a lot of questions. I was reminded of the magnitude of the feat. A 46 year old women living with lupus and MS finished a 50 mile ultra marathon. I was discharged early because rest was more important than being observed at the hospital.,
The run was a great reminder of how I am surviving two chronic disease. I learned so much from training and running the race that will keep me moving forward as I face new roadblocks….and I will face new ones. Here are the top 10 things I learned:
1. Coffee shops have the best bathrooms.
2. I am only as good as my coach and my ability to listen to her.
3. I will always chose the path with no regrets.
4. Past attempts are not failures if you keep learning from them.
5. I feed off my community and their words.
6. Other peoples success fuels me.
7. I am not cured of chronic disease but I will have some great days.
8. Accepting the limits of diagnosis is challenging but necessary, especially for the people I love.
9. Grilled cheese at mile 32 is not appealing.
10. Check the weather before I pack shorts.