Perhaps the title is a bit strongly worded, since what I have is more of a "condition", but nonetheless, I wanted to share this. It's kind of long, so if you're not into the tragic story of my life and rebirth, then you may not want to read this.
I had struggled for years to find out what was ailing me since September 2010 when it all began. I was running on a full scholarship at the University of Richmond when I got a slight cold before a cross country race one day. I noticed something a little "off" that I couldn't quite put my finger on during the race, like my heart was working harder than it needed to. I had run through several minor illnesses before that, but this one was different. Over the course of the season and the following year, I began to notice the globus sensation, or the feeling of a lump in the throat.
I was still running relatively well, keeping up with my teammates in practice, but I complained that this mystery illness was holding me back and I tried in vain to describe what was happening. Various doctor's visits were to no avail. Despite the fact that I was a star runner in high school and was keeping up with the team in college pretty well, I insisted that I could be running even faster if it weren't for these little annoying symptoms that developed over the course of the season. By the end of the season, I could hardly manage to run anywhere near what I was capable of. Despite this, I served as a good 4th or 5th man on the team that made our school's historic return to XC nationals for the first time since the 80s. I felt a mixture of elation and melancholy after that team victory. I knew I was sliding fast. Nationals was the worst race of my life. I felt so good and physically ready when I wasn't competing, but the second that gun went off and all the adrenaline rushed through me, I was dead in the water. My legs wouldn't move and I brought up the end of the team that day. I had lined up next to the likes of Matthew Centrowitz, now a world champion in the mile, hoping to actually compete with them. What I didn't realize was that I had a genetic disease and it had, for no particular reason, decided to rear its ugly head at that point in time, when I was 21 and a budding professional athlete. This claim is not without merit, mind you. My sister is actually a professional marathon runner and finished 7th at the US Marathon trials, missing out on her Olympic bid, but not by that much, especially in a stacked field. I could have been great.
Despite this drawback, I continued to try everything under the sun to get my energy back, to rid myself of that damn lump in my throat that reminded me something was STILL wrong with me. I continued to run, but the running was very laborious now. I had to work extremely hard just to keep my legs moving, and keeping up the rigorous training schedule I used to have was out of the question. Fast forward to senior year. My coach and I had a good relationship, both of us being country boys from West Virginia. We shared a bond and he took particular interest in me because I was really good at running up until this point. I had red-shirted the track season and spent all summer finding crackpot ways of healing myself, thinking I was being affected by electromagnetic fields and, convinced my mercury fillings were the problem, I spent good money to have them removed. I don't regret that, but the following year was one of the lowest points of my life.
I went into the year realizing that my attempts to cure myself had been futile and, despite having kept fit by still running all this time, I decided to not go to the XC camp that our team attended every year because I was simply too slow. I would hold everyone back. That was a tough decision. I grasped at every last straw that I could, trying to convince myself that I could salvage my running career somehow. I maintained a connection to the team, coming to practice and helping out, but knowing full well that it wasn't looking good for me. With no option left, I finally ended my participation in the sport. I had found some new friends and stayed out late drinking one night. We had a Sunday long run the next morning, but I was late, having woken up hung over. I decided it was as a good a time as any to write a tearful goodbye, forwarding the e-mail to my entire team as I sat at my desk, bawling my eyes out.
That was one of the hardest things I ever did. That year did not turn out well. I kept drinking, convinced I could find a life outside of running with my new friends, participating in all the treacherous, devious activities that my colleagues were without reservation because I no longer had to think about the effect on my running. I drank and partied and got into trouble. I even got kicked out of school for reasons I'm not prepared to disclose here. That finally ended my debauchery and the living nightmare I found myself in, surrounding myself with other miserable idiots I called friends.
After that episode, life finally cooled down and I was given some time to think about what had happened. I was depressed, miserable, living with my parents and doing a dead-end job. My new life's purpose was to connect myself to the world in a way that I never could as an out-of-touch, coddled, aspiring professional athlete. I drove a company car for a newspaper company for almost two years, interrupting it with a failed attempt to hold down a managerial job that I simply wasn't qualified for at a grocery store. I went back to the paper delivery job, where I drove long hours every night, sometimes sobbing from flashbacks of my college years and the failure of my chosen life path. I almost got a break when my boss quit and I was offered his position. This was it, I thought, I was finally going to move up in the world a little. It would have happened, if my boss hadn't suddenly decided, after doing his new job at the oil fields for two days, that he would return and they had no choice but to take him back and reject me, considering he had been with them for 35 years. During that time, I will never forget some of the conversations I had with my bosses, all older and wiser than me. They admired me for my reliability and my work ethic. It was after I failed to get that job that I finally gave up on all my pursuits at home and moved to China to find a job teaching English.
It should be noted that this has turned out to be a very good decision on my part. I now make more than I ever would have back home in rural West Virginia with a useless Political Science Degree, having changed schools and completed my degree while working. In the present day, I no longer muse over what I lost all those years ago, opting to see the positive side of what happened, noting that my athletics did get me a free college tuition, which has helped me not only to hold a degree, but to have it completely paid for and be debt free while making money. Life is good. All except for that haunting realization that something was still wrong with me and I hadn't been able to put my finger on it all those years.
Now I know. I have a condition called "myotonia" or "myotonic muscular dystrophy." It is, apparently, a rather mild form of what turns out to be a pretty well-known disease that I didn't know about because it didn't occur to the doctors based on the symptoms I was describing. Having described my symptoms online, though, I have found an entire community of people who have the exact same symptoms of me. I've learned that my "disease" is a genetic disorder for which the severity varies from case to case, with the congenital (from birth) ones being the most severe. It was clear that my case wasn't congenital or else I never would have been as competitive as I had been in running. This disease causes my muscles to seize up when tensed. In other words, I am able to voluntarily contract my muscles, but they then take several seconds to relax, meaning if I attempted to make any sudden, erratic movements such as taking off sprinting, bounding up a flight of stairs, or jumping over a hurdle, my muscles would almost immediately freeze up and I would fall over until my muscles could relax again, not unlike those "fainting goats" that you probably laughed at that got scared and took off running, then promptly flopped over because their legs seized up and stopped moving even as they attempted to escape whatever it was that scared them. Yes, this happens to humans, too, and it happens to me. Here is an example:
These are examples of the congenital form of myotonia, which is a bit more severe, but the symptoms perfectly match mine. I sometimes have difficulty going from standing or walking to running, from sitting to standing, walking up steps, loosening my grip on an object after I've grasped it, and it also affects my face, meaning I'm sometimes forced to hold a facial expression for several seconds against my will. I can cope with these things in daily life, but it absolutely prohibited the possibility of being a competitive athlete.
Now that I know, I am seeking to find a community online of people who have also experienced this and may not know why, as well as people who have it and know why. I want to find others like me, to know their stories and to find possible treatments or cures, some of which I've already found for myself, although I pine for a cure because I don't believe that this can happen to a person at 21 years old and not a thing can be done to reverse it. There was a time when I did not have this condition, and I hope, even against the odds, that I can achieve that mode of being once again.
My life is much more fulfilling now than it used to be, and I don't get depressed about it, nor do I well up when I talk about it anymore, as I once did. Still, I want to clear the air and to tell everyone about my struggles so that on the off chance that anyone might go through the same things that I did, they will know they are not crazy. This condition is probably not a big deal for people who are not professional athletes, but it practically ruined my life at the time, and that is indeed how I thought of it. I believed my life had been ruined.
Before you accuse me of self-diagnosing, it was not me who found the information. The name of this condition was given to me after I described my symptoms and it matched perfectly. It turns out it's a genetic disorder with, in my case, later onset. I discovered that I do, indeed, have this in my family on my father's side. My aunt and my grandmother both had it on my father's side, and my father suffered from balding and cataracts, two side effects along with a weird story about his college running days when he was also a star runner and told me this weird story about him "freezing up" at his nationals race. It is all very eerily similar to what happened to me, but I suppose not that surprising with the revelation of the genetic factor.
I suppose I should end this story with an appropriate clincher, but I can't really think of one. I really shouldn't be wasting my time writing things like this while I have work to do, but if you or anyone you know suffers from something like this, feel free to mention it and any treatments/cures you may have found that big pharma doesn't want you to know. Thanks for listening. In a way, I needed to vent about this because it has been affecting me for a long time. Even if I never solve it, at least I know.
Reply With Quote
Originally Posted by donnay
Site Information
About Us
- RonPaulForums.com is an independent grassroots outfit not officially connected to Ron Paul but dedicated to his mission. For more information see our Mission Statement.
Connect With Us