“You have Multiple Sclerosis ”
“Is it going to kill me, or am I going to go blind?”
“Ok good… I just bought an expensive digital camera, and I’d hate for it to go to waste.”
This was the gist of the conversation I had with my neurologist at the time of my diagnosis. I was worried, but I still had a sense of humor about it. Let’s rewind about a year prior to this. It was late May of 2008, and two weeks before my wedding. I started having problems with paralysis in parts of my face, and I looked like a stroke victim when I smiled. A trip to the doctors office revealed I had “atypical Bells Paulsy” and was cleared up in a few weeks with oral steroids, but not before our wedding day, where wedding pictures revealed more of a smirk than a smile. One year later I started developing a dark shadow in my vision field in my right eye, another couple of doctors visits and I have optic neuritis, and and MRI reveals lesions on my brain and a diagnosis: Multiple Sclerosis.
I was put on a once a week inter muscular injection known as Avonex. Every Sunday after dinner, I would psych myself up to jam a long needle into my thigh and inject the medicine. That wasn’t even the hard part, I started having reactions to the medicine. For 24 hours after the injections I would have flu like symptoms. Intense shivering, heavy sweating, and poor sleep. Eventually I was put on a different med… Copaxone, a daily subcutaneous injection, fun. At least I wasn’t having the same reactions as the previous meds… Just dealing with what feels like being stung by a bee every single day when I inject.
It’s now Halloween 2010, and my wife and I welcome our newborn daughter to the world, and I become a stay at home dad. While my MS hasn’t progressed much since my diagnosis, I was now stressed out due to parenthood. Dealing with bouts of depression wasn’t helping either. My wife was finishing up her medical residency program, and got accepted for her medical fellowship in Tennessee (did I mention we were living in Wisconsin at the time, and that we were living in the Chicago suburbs prior to our marriage? Yeah, we have moved quite a bit). While living in Tennessee, my depression was getting worse. Constantly being bummed out because I didn’t know anybody down there, and my closest friends were a 10 hour drive away. Eating bad food, a drink or two a day, and inactivity was starting to take its toll on me, I was starting to gain weight and was still unhappy for the most part. I had photography as a hobby, but it started to be more about buying gear than it was about happiness. It’s now April of 2013, and we have another kid. Oh boy.
My wife finished up her fellowship and lands a job with Cancer Treatment Centers of America back in our home state of Illinois. I was happy to be back, but I was really out of shape. When I managed to pull a muscle in my back while sleeping I said enough was enough. We were living next to a forest preserve that had 3 miles of crushed limestone pathway, and I made a goal to run the whole thing by fall. At the time I couldn’t run more than a quarter of a mile without being winded. I downloaded a “couch to 5k” app, and bought a cheap pair of running shoes from the department store, and started running. Seven weeks later it’s the first day of fall and I ran my first 5k, the Grayslake Fall Frolic 5k, and discovered I liked running.
It started with a 5k, but my love for running, and ultimately my love for trail and ultra running, took off when I did my first 10k. January 2014 I did the Frozen Gnome 10k. Snow covered single track trails and a laid back approach to running (we walk the hills? Ok!). This race was also where I found out about ultrarunners because it was also a 50k. Though it didn’t really click in my head what an “ultramarathon” was, the aid station food and giant box of sticky buns and “Big Texas cinnamon rolls” did appeal to me! While the race did give me a bad case of IT band syndrome, I eventually got over it and trained for my first 1/2 marathon at the Rock and Roll half marathon in Chicago in 2014.
Now up to this point, my MS hadn’t progressed and I haven’t given it much thought. Running was just a way to get into shape physically and mentally. Though Instagram I had started following other people with MS, and learned a little bit about their struggles and problems. I saw for some people that the gift of walking, or speech, or vision can be fleeting at times. Maybe it was time to take my own diagnosis a little more seriously, and not take what I have the ability to do for granted. It was time to see what I was capable of.
I started with a local running group called M.U.D.D. or the McHenry Ultrarunning Dudes and Dudettes. I was running with the race director of the Frozen Gnome race I had previously done, Michele Hartwig. I was joking about coming back to do the Frozen Gnome 50k one year after the 10k kicked my butt. To which she replied “of course you should!!! I’ve seen the way you run out here, you can TOTALLY do it!” I guess I’m a sucker for peer pressure because I signed up as soon as registration went live. Gulp. With nothing more than a half marathon training plan that fit into my schedule, I set out to run longer. And before completing my first ultra, I decided to sign up for a second one… The Squamish 50k. I’ve never been to Canada before, but some delightful videos by the Ginger Runner himself, Ethan Newberry, inspired me to try something really hard!
With 20 miles being my longest run to date due to setbacks from my pesky IT band, Frozen Gnome 50k 2015 was just around the corner. Nervous? Of course! But there was no turning back now. It’s race day and I was more worried about the temperature than the unknown of running past 20 miles. Forecast was -18°F windchill at the start… The warmest it would get that day would be 8°F (not including windchill). I was doing fine, albeit really friggen cold, I was around 15 miles in and my friend Jeffery Lenard who was a course marshal during the race asked me how I’m doing, to which I replied “I can’t feel feelings anymore!!” He responded with “Good! Use that! Embrace the suck!” And “you’re surprising the shit out of me!!” I charged on. Well by mile 18 my day has gone south due to my IT band hurting so bad I could barely shuffle. I was reduced to a snails pace, while talking to myself out loud, cursing, and even crying. This is the “suck” I’m supposed to embrace? This is miserable! As I come out of the woods to complete my 4th loop (5 loops total), I saw my wife waiting for me in the frigid cold. I hugged her, and said I had another loop to go. I now was more determined than ever to finish despite the pain, the cold, the negative thoughts. And when the race clock turned 7:44:21 I finished running my first ultramarathon. Never in all my years I thought I could do something like that.
About a month or so later I had my annual visit with my neurologist. He does a few motor skills tests to see if anything has changed, he’s asks questions, and when I told him I ran 31 miles in sub zero weather he was floored. He couldn’t believe what I said I had done. “Did you have any MS symptoms that affected you?” “Nope! I didn’t have any problems that I could attribute to MS!” He was speechless, and he even said he was inspired!
At first running was just about getting in shape, now I run because I can. I was diagnosed with a disease there is no cure for, and I never know when it can take away my ability to lead a (somewhat) normal life. Even when running can be painful, or suck at times, I know that simply being able to run is something I can’t take for granted. Running is a gift.
2015 was a special year for me. I ran my first 50k, then going on to running my first race outside of the country at the Squamish 50k (also my first time visiting Canada), doing my first 50 miler at North Face Endurance Challenge series Wisconsin, and then running 33 miles just two weeks after North Face to celebrate turning 33 years old… For fun.
I have met some really amazing friends though running, to which I am greatly thankful for, but what I am thankful for the most is my own ability to do what I have been able to do. I want to be able to inspire other that they too are capable of more than they ever thought was possible. Running ridiculously long distances may not be for everyone, but for someone who might be suffering from something like MS, just walking a few steps can be their biggest goal. “Embrace doubt, otherwise you’ll never know what you’re truly capable of” – The Ginger Runner “The Squamish 50/50”
I’m aiming to make 2016 just as awesome. I want to continue making new friends, and continue to be happy and spread the happiness that running has brought me. I want to continue inspiring others (especially those with MS). I’ve got races lined up from the Gorge Waterfalls 50k, to Ice Age 50m, and even returning back to wonderful British Columbia in August to take on the Squamish 50/50. Gulp.
A big thank you to my wife Laura for being there for me through thick and thin!