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What It Was Like to Be Told I Have Multiple Sclerosis

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There’s a great campaign happening right now called Kiss Goodbye to MS. I love these campaigns because they bring awareness to diseases most people don’t know much about — plus they raise funds to find a cure. And I am all about the cure, because I don’t want one more person to have to experience what I’ve experienced with multiple sclerosis (MS).

I’m not talking about the symptoms of the disease. I’m talking about what it’s really like when you find out you have it. You can go to Google and learn every bit of medical information you want about MS, but nothing prepares you for what will happen to you emotionally.

Imagine someone with great authority tells you, you are going to get hit by a vehicle. They don’t tell you what kind, or when or how extensive the damage to your body will be. They are just certain the event will take place.

If you’re like me and you get this news, your mind immediately races to the worst possible outcome. I took every symptom I could find on the Internet, applied it to my body and visualized my future. In that moment, I thought I was screwed. That my life was over. Nine years later, I now know it is not. However, that does not stop the thoughts of “what if?” and “what now?”

For the most part, I live my life normally. I write. I get paid. I do laundry. I workout. I go to bars with friends and have great conversations over wine. I go on vacation and visit distant relatives and far off places. I dream of a future filled with love and success, but my brain can never forget those words: “I believe you have multiple sclerosis.”

And because of this, I think about getting hit by the vehicle every day. I try not to, but it’s hard to avoid. Sometimes my thoughts are tame. Maybe I’ll simply be crossing the street and a car will gently knock my hand back. I’ll be bruised, but it’ll heal within a week’s time and I’ll return to normal and I’ll never have to deal with the car again. On other days, I’m driving along singing to Adele when I get sideswiped and shatter my leg. The bones take 10 weeks to heal, there are another eight weeks of physical therapy and for the rest of my life, I deal with arthritis in my ankle because of the accident. And then there are days when I feel like I am going to get hit by a truck and my life will be in shambles. Some days these thoughts run through a constant loop, better to worse, worse to better. Some days they’re just a small blip in my grey matter’s synapses. But every day that vehicle haunts me in some way or another.

Sometimes I can forget about it. When I’m in yoga balancing on my hands or skiing black diamonds and my body feels strong and invincible, the barreling 18-wheeler of MS has nothing on me. But then there are times when my body aches down to my bones, and I barely have the strength to sit at my desk and work, and I wonder, is this it? Is this when it all goes downhill?

I don’t like to think these dark thoughts. I really don’t. But the Internet is rife with fuel for my imaginative brain, and sometimes I feel like I am naked standing in the middle of the 405, cars buzzing by, just waiting to be hit.

There is no cure for MS. There is no way to avoid that vehicle. There are drugs to slow the progress of the disease, and there are treatments and other pharmaceuticals to help ease the symptoms. But still, nothing makes it disappear.

When I first sought the advice of my doctor, I thought there would be a simple fix to my symptoms. I knew there was something wrong with my body, and I wanted to be better. So I sought answers. And I got them. Multiple sclerosis. Two words. That’s it.

That’s what it was like to be told I have MS: one vague set of words. It’s an enigma. Something you can never fully understand, but you fear every day. It creates a brain full of wonder and demyelinated nerves, but that brain is my brain, and so many others. And that’s why I want to #kissgoodbyetoms.

woman doing a handstand next to a column

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Originally published: February 17, 2016
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