The upside of MS

Sometimes, MS provides the spark you need to follow your bliss.

by Stephen Kamnetz

Six and a half years ago, the life I knew crumbled around me when I was diagnosed with multiple sclerosis. Up was down, left was right, and all that was right in my life suddenly felt very wrong. Fear consumed me. How is this going to affect the rest of my life? What will people think of me? Who do I tell? Who don’t I tell? Who will want to date or marry me and, essentially, inherit the worst parts of this disease? Will I be walking in one, five, 10 years? Will I be able to care for my hypothetical future kids? Will this kill me? If so, when? What am I doing with my life?

Six years later, many of these questions and fears are still present in my mind, and will likely be there forever in some capacity. What I find most challenging is the uncertainty of knowing when and how the disease will manifest itself. Until the day that it debilitates me, however, I plan on living like tomorrow could be that day. Despite all of the fears and uncertainty that came with the disease, I truly consider it to be a blessing. Without it, I would likely not be where I am today.

In the years that followed my diagnosis, I battled depression and was upset with the path that my life had taken. How had I resigned myself to spending eight to 10 hours a day in front of a computer staring at Excel sheets as a Microsoft contractor? This is not what I had hoped for as a kid or at any stage of my life. Yet, there I was. It wasn’t until I was returning from a dream trip to Costa Rica with some of my best friends that I realized with certainty that my life had to change.

On the flight home to Seattle, I was reminiscing about all the amazing memories we had created on the trip and was absolutely dreading getting back to the real world. Sure, on paper, I had everything going for me back home: great friends, supportive family, successful career, a house in one of the most beautiful cities in the country. But on that flight, I realized I needed something entirely different, and the outlines of a plan began to formulate in my head. I would work for one more year to build up reserves to fund the trip of a lifetime. After all, life is for the living. I was sick, but I certainly wasn’t dead.

One year and some months later, my dream finally became a reality. In the subsequent year I explored ancient Mayan ruins, climbed a number of volcanoes, swam with whale sharks, became a dive master, tried my hand at surfing, sailed through the crystal blue Caribbean waters from Panama to Colombia, witnessed evolution in action in the Galapagos Islands, camped in the wilds of the Amazon jungle, trekked to mystical Machu Picchu, stood on the floating islands of Lake Titicaca, and through it all, fell in love.

At the end of this life-altering journey, I flew back to Seattle to summit Mount Rainier and stand next to my best friend as his best man at his wedding. But when summer ended, I had to follow my heart. The love of my life was starting her master’s degree in Barcelona. Thus, I knew where I needed to be. When I joined her in Spain, I took a course so I could teach English. We lived meagerly, but I have never been happier.

This is not to say that there haven’t been some struggles. Getting my disease-modifying treatments (DMTs) has been a nightmare in every country I have visited. Every few months I either had to take quick flights back to the States or have people visit me, medications in hand, wherever I was. The risk of mailing them internationally, which is illegal, was far too high. There are also days when fatigue hits hard and all I can do is sleep, but fortunately those days are still uncommon. I have been incredibly lucky that I haven’t had any severe relapses. It’s impossible to tell whether that is due to changes I’ve made, DMTs, luck or anything else, but I’d like to think my life choices played a part.

In October, my fiancée and I returned to Seattle to put down roots together, and we plan to be married within the year. I can undoubtedly say that I would never be where I am today had I not been diagnosed with MS. In some strange way, it is the best thing that has ever happened to me.

My MS diagnosis was, at first, a crippling blow, but over time it became my strength and my inspiration. I know it’s a possibility that someday my disease will catch up with me, but I refuse to let that fear prevent me from living the most fulfilling life I can imagine.

Stephen Kamnetz recently returned to Seattle with his fiancée. He was diagnosed with MS in 2010.