Last December, a month before running my first 50k, I went to the neurologist for my annual check up. As usual, he asked me what I had been up to; he was surprised by my rapid weight loss. I told him that I changed my diet, and that I was running… a lot, and I told him that I was going to run a 50k in the beginning of January. He looked up at me from the yellow pad of paper on which he was scribbling his notes, and he raised his eyebrows.
“Do you really think that’s a good idea?”
I was caught off guard. Why wouldn’t it be a good idea? I had been training for months, and I had sufficient mileage to run the race.
“I’ve been training a lot. Every weekend I do back -to -back long runs. I’m ready.”
After having epilepsy for twenty years, I should have known better. He wasn’t questioning my training, he was questioning my brain’s ability to endure so much stimulation. He was concerned about the potential for an electrolyte imbalance, among other possible problems that amounted to an increased risk for a seizure. Upon reflection, I could understand his apprehension. However, in his office, I became defensive. I spent hours up in the trails alone every weekend. It wasn’t until just a few months ago that, after my father’s persistent badgering, I started carrying my phone. It never dawned on me that my epilepsy could be a hindrance to being an endurance athlete.
My doctor glared at me and said, “you know Sarah, you have a 50% higher likelihood of instantly dying. Your seizures are controlled by medication, but you just never know.” He was never one to have a good bedside manner. “Running alone all the time, and running a race like that can be dangerous.”
I was shocked, and I sat in his office, listening to him ramble on about all of his concerns. I fought back tears, and nodded my head. I managed to squeak out, “I’m still going to run the race.”
“I want you to be aware of all the risks. If you choose to run the race, please carry some Lorazepam with you, just in case. “
I scoffed at his suggestion, and as per the usual, he renewed my yearly prescriptions. I left his office feeling angry, devastated, and deflated.
I was diagnosed with Juvenile Myoclonic Epilepsy when I was fourteen years old. There are many different types of seizures and therefore, different kinds of epilepsy. In fact, the types of epilepsy are so vast that Diane Van Deren used running ultra marathons a means to manage her uncontrolled seizures. My type of epilepsy is extremely different, and I often think that there is more that we don’t know about the brain than we do know.
Despite having a neurological disorder, I never felt that it impeded my ability to go through my daily life. While there were times when I had to stop driving to change medications, or I experienced intense side effects, those were all minor bumps in the road towards forward progress. My seizures are controlled by medication, and with one exception, the breakthrough seizures that I had were when (in college) I forgot to take my medication. I am able to drive, to swim, to teach and to live an independent normal life, and I have been seizure- free for thirteen years. However, after so many years, I started to wonder if I developed a false sense of security. Maybe my medication allowed me to become overconfident.
The causes of a seizure range from sleep deprivation to caffeine to alcohol to flashing lights to anxiety to hormone imbalances to electrolyte imbalances (to name a few). While I try not to be reckless in my lifestyle, I don’t allow my disorder to control my life. I drink coffee, I drink alcohol, I often don’t get enough sleep, and I sometimes play video games with flashing lights. I live an average life of a thirty- five- year- old woman; I don’t live in fear.
However, I slowly started to realize that perhaps running a 50k was outside the realm of “normal” and I would have to reconsider the doctor’s recommendations. The average person doesn’t go for a six- hour run, and many of the risk factors of running an ultra marathon overlapped with that of having a seizure.
Endurance athletes encounter many limitations both physically and emotionally whether it’s in the midst of a race or a training run. I often tell myself when I hit a physical wall “mind over matter.” As humans, and more specifically as athletes, there are certain variables that we can control (whether it’s our training, our eating, or our resting), but there are many more that we can’t.
The verb “to endure” denotes suffering and tolerance of pain. Being a long distance runner requires me to feel a significant amount of discomfort. I have twisted ankles, bruised various parts of my body, suffered a stress fracture, dealt with several different forms of tendonitis, pushed through leg cramps, bonked too many times to count, been dehydrated and the list goes on and on. I dread going to the doctor because I fear he will tell me to “take time off.” Yet, there are times when I have to listen to my body because if I don’t I risk ending my running career. I find that I am constantly trying to find the balance between pushing my body to the limit and taking care of my body in a way that allows it to recover sufficiently.
While I can’t control the fact that I have epilepsy, I can make intelligent choices that limit my risk factors. Sometimes, I find that there is a fine line between living in fear of what may happen and making choices that are in the best interest of my well being. After much thought, I decided to carry Lorazepam with me during the race. To some, it may seem small, and it may seem silly, but to someone who rarely carried my phone let alone any medication, I felt like I was succumbing to the “what if” mentality. However, I came to the realization that carrying the drug was not a sign of weakness or fear. Rather, it was a proactive decision in acknowledgement of the feat that I was going to attempt and how it overlapped with the risks of my neurological disorder. I decided to run as safely as I could, and to control the variables I was able. After all, would I run the race without eating or drinking the entire time?
At its core, running has the ability to expose our greatest fears and weaknesses, and because of that, I have chosen to surrender what I can’t control: my neurological disorder, but I choose to accept and embrace the help that modern science has afforded me while still pushing my body to extreme limits.