A Race for a Cure

As I stepped out of the door at 5 a.m. this morning I was hit with a wall of humidity I was not expecting. While stretching to prepare for my first official training day I started to think about the hot weather of summer, of the ways I can avoid it and the likelihood I will be successful in doing so. When I made it to the end of my street I could already tell this was going to be a tough run. Luckily, the sun was not yet up in its full glory, and the pavement was not yet radiating waves of heat through my sneakers. At this hour of half past dark, the world is not yet awake and the day is still full of possibilities. There is something about the early morning hours that makes me think very positive thoughts of what the day can hold, what the year can do and what my life can be. Maybe it was one of these early morning hours that I decided to run the marathon in the first place, in fact I know it was.

It was just over a year ago when I had a whole week of early morning hours to do nothing but think. I was in the hospital and no one sleeps past 5 a.m. there. If you do, you will be rudely awakened by a person trying to siphon blood out of one of your veins like a vampire. Therefore, I would always be sure to wake up before hearing the shuffle of white shoes heading my direction. I was there because for 20 years I have had heart palpitations that the doctors seemed to blow off either as stress, hormones or me being a complaining woman. After running the half marathon, I had decided it might be a good idea to find out once and for all what it was before making a final decision to run a full marathon. After all the marathon training might make me feel like dying, but I did not want to actually do it. The doctors put me in to run all sorts of tests (most not pleasant) and while they did so they found a little more than the reason for my heart racing. They found lesions on my brain. It was this information that had my head spinning not only in the early morning hours but also through the whole day. What can that mean? Is it cancer? Is it nothing? Will I be OK? The doctors assured me it was not cancer but would not comment on any further ideas. My husband and I Googled until our eyes went cross. Huge medical terms swirled the pages as we read them out to each other firing them off like machine gun bullets. Lupus, infection, sarcardosis, Lyme disease, MS, tumors and a bunch of other things that were just as scary. With each possibility I would go through the full list of symptoms and declare with the full medical certainty of a doctor it could not possibly be that one, all the while not having a clue if it was or not. I had a team of different kinds of doctors working on me looking for answers to the lesions as well as the heart issue. I had several MRIs done, and was put on a video monitor with electrodes glued to my head. They were looking for seizures and now I know that is what they were hoping for. After a week they were able to find the source of the heart issue. I have an arrhythmia and severe syncope (fancy name for fainting and low blood pressure). I will need to take heart medication twice a day for the rest of my life. I was told it was a miracle I was able to run the half marathon without passing out, but with the meds I should be OK. Yet I could not be discharged until the neurologist had the results he was looking for. Therefore, I stayed. I stayed in that hospital bed, in panic, and in a state of uncertainty, which led me to those early morning hours of thinking. Thinking about the life I had, the life I was going to have and my control of it. I made the choice immediately that if there was any physical way, I would go forward and run the marathon. 

Later that day the neurologist came in to finally discharge me with results of my latest MRI, and blood work. Before he entered the room I heard him consulting on the phone outside my room with another doctor confirming his suspicions. He entered the room not in the upbeat stride I had seen from him all week, but in a sort of shuffle looking down. He entered, sat by my bed and when he made eye contact, I could see it. I could see a look in his eyes that said he did not want to be in the room. I could see he wanted to get out of there as fast as he could. I was scared because all week he had come to my room, sat, spent time with me, answered questions in a relaxed way that all good doctors should have. His bedside manners were wonderful never making me feel like he needed to be somewhere else more important, and always filling me with positives to look at. Nevertheless, in that moment I could see the torment in his face, the strain of a doctor having to deliver bad news to his patient. I felt sorry for him wanting to help him feel better and tell him no matter what the news was it would be OK, but I could not, I was too scared for my life. He slowly began talking about how my blood work had ruled many things out and the MRI ruled a few in. He wanted to send me to a doctor who was a specialist. He would do a more thorough workup in his area of expertise. That is when he asked me if I would like to see that doctor and I said “yes but what does he specialize in?” The doctor looked down to the floor and said, “He specializes in Multiple Sclerosis.” The words hung heavy in the room and they were almost too big to fit in my ears and cross over to my brain, but once they did I felt their heaviness in my body. He quickly uttered a half-hearted apology about the news that seemed more for him than me, and left the room to get me the office number. I sat there alone. I clung to the hope that he was wrong all the time knowing he was right. I left the hospital that day feeling more broken then when I entered. It would take another nine months, three more MRIs and two specialists to get a definitive diagnosis, but indeed, he was right. 

My future with this disease is uncertain because every patient is completely different. Will I be able to do all the things I want before my body starts to turn against me is anyone’s guess. Will training for the marathon make it worse? No one knows for sure, but what I do know is that I will not, and cannot sit and wait for it. I refuse to wait for the bad days to come. I will fight, I will scream, I will push until I can go no more. The days will be good, and they will be bad. There will be easy runs, and there will be hard ones, but I can tell you this, there will be runs.

So today being the official first day of my 17-week training leading up those grueling 26.2 miles, and the heat and humidity not being my friend at its peak I am reminded what I am fighting for. As the tremors in my hand creep up around mile two and I make a conscience effort not to trip over my weak foot I am filling with determination. I want to do this, just once. Just once I want to push beyond the limits and cross the finish line. I might still be crazy for even trying, but I would rather fail trying than never try because I was afraid to fail.