How Facing Chiari Malformation Is Like the Race of a Lifetime

Dealing with a chronic disease is a lot like running a marathon.

In high school, I was a distance runner. In track, my favorite race was the 3,200-meter run. Most people wouldn’t even attempt it. “That’s too far.” “It looks too hard.” “I don’t know how you do it, I would drop dead after the first lap.” I heard these things over and over. For me, it was just as much mental as it was physical. The people who didn’t think they could never would.

My favorite sport, though, was cross county, out in the open away from the endless laps around a track. It was tough. At school, football players would sometimes come up to me and tell me they saw us practicing and they thought us runners had it so much harder. They could never do what we had to do, they said. It was way too much running. Sometimes I hated those practices too, but they prepared me for the races, for the hills.

I loved the hills. On the day of the race, like the other teams, we arrived early with plenty of time to warm up by jogging the course beforehand. Not just to warm up our muscles and prevent injury but to learn the layout of the course. We had to know where it was easiest, where it became more challenging, know at which points in the race to conserve energy if we could, where to kick it into high gear, and hopefully not get lost if there was a lot of space between runners or the person if front of you didn’t know what they were doing. It wasn’t just running. There was a strategy to it as well. You had to know where you needed to be at each point in the race if you wanted to place high and end with a good time.

This warm-up time is also where I would listen to my competitors comments and watch the expressions on their faces when we got to the hills. This is where the mental race started, as doubt could easily creep in even amongst the strongest, fastest runners. I loved it. I knew beforehand exactly where I was going to pass certain girls – it was on this hill I would pass her or that hill there — that’s where she was going to lose. For me, the hills were the best part. I excelled on the hills where others failed. Some of my fastest times and best results were on the courses with the most and steepest hills.

Those days are long behind me now, not just because of time and age but also because of what my body is going through. For the past two years, I have slowly but progressively gotten weaker, to the point that just going to work and performing day-to-day tasks had almost become too taxing. It’s been frustrating, to say the least. Before long, I no longer could participate in yoga, and even short hikes had become a challenge, my body overcome by weakness, leg stiffness, shortness of breath and fatigue. I tried not to let it show too much, but it did. I had stopped cooking if I didn’t have to, and most days keeping up on housework was the least of my priorities.

Finally, after a two-year battle just to get a diagnosis, I recently underwent neurosurgery for a chiari malformation. A chiari malformation is a condition in which a portion of your brain – the cerebellum (responsible for a number of functions including balance and coordination) pushes out of the skull and into your spinal canal. There’s no cure, just a decompression surgery to hopefully make things better and stop it from getting worse. My surgeon, reluctant to even perform surgery, said he wasn’t confident it would help at all.

I’m glad I had surgery. I am better but not 100 percent. While the headaches, numbness and debilitating neck pain are now gone, I still have a lot of bothersome right side weakness that may or may not improve. It’s possible my condition could still worsen, and any of the other symptoms can return at any time. Nobody really knows because each patient is different; each body responds uniquely to a chiari malformation just as it would to any number of chronic diseases.

I tell people that right now, as of today, I’m 75-percent better. Seventy five is good, better than what my neurosurgeon expected, but it isn’t good enough. Not for me. My persistent, competitive nature wants more. I know in all reality though, I may never be better than that.

So now, my chiari malformation has become my new race — a long-distance race with the toughest, steepest hills and the strongest runners. The weakness in my dominant right side, another hill. Every symptom, another competitor who wants it as bad as I do. But I have the upper hand: I love the challenge of the hills. I know that to maintain my highest level of functioning, to finish strongly, I have to treat this just as I would a long distance race.

How do I do that? The same way I prepared for those races so long ago.

Attitude. For this race, I have to stay mentally focused, even if that means avoiding those who bring a negative energy or don’t believe in my abilities.

Self-awareness. Knowing my body’s strengths and limitations, using its strong points and working consistently to improve the weak areas. Though the races were long distances, we also had to practice our sprinting for when we needed to kick in at the end, something I struggled at. But I knew that going in. I acknowledged I had to be ahead of my opponents before a certain point in the race if I wanted my best chance at beating them.

Set goals. Then crush them! At the start of each season, our coach would have us write down our goals. Who did we want, or have, to beat this year? What was the fastest time we aimed for? What place did we think was obtainable at the state meet? How were we going to succeed? I have to set those same kind of goals now. Where do I want to be in three months? Six months? One year? How am I going to get there? What are the steps I am willing to take along the way?

Eat properly. Junk in, junk out. An athlete who doesn’t give his or her body the proper nutrients isn’t going to have the energy to perform at their best. Having a chronic disease is no different. Your body is already in a stressed state, working harder just to perform daily functions. And healthier organs have to compensate for the diseased ones. This also puts extra stress on your immune system, making you more susceptible to other illnesses. Eating the right foods and avoiding harmful ones can prepare your body for the race.

Hydrate. I admit this is something I’ve never been good at. Drinking a bunch of water when you are sick helps, but it is not good enough. You have to stay hydrated before the race, before the illness. That’s how you avoid becoming dehydrated during times of increased activity or stress.

Sleep. Get your rest. Your body can’t perform at its best if you don’t get the sleep your need. Sometimes that means setting limits for yourself and boundaries with others. Know when to say no because your mind and body need to rest when needed.

So, that’s it! That’s my game plan. This is how I’m going to face my condition. I’m going to treat it as a race — the most difficult race I have ever run with the longest, steepest hills. I remember a poster my beloved coach had hanging in his classroom that read, “If you don’t make dust, you eat dust!”

I’m ready to make some dust! Bring on the hills! The race is on!

Follow this journey on Nature’s Soul.

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Getty image by jacoblund