But that was a lie. I knew.
In fact, I had known since my senior year in high school when doctors informed me that I had a missing enzyme that could eventually lead to a form of muscular dystrophy. They reassured me, however, that I had nothing to worry about for the time being—that it wouldn’t affect me until later in life, and by then, they’d surely have found a cure.
So I enrolled at Northeastern in the fall and lived like a normal kid for four years. I was in a world-class city and the Red Sox won the World Series not once, but twice, while I was in school. How cool was that? Sure, I had a missing protein or enzyme or something, but so what? It wasn’t anything I had to worry about until my 30s or 40s, and to a teenager, that’s a lifetime away.
Warning SignsIn May 2008, I graduated cum laude with a degree in marketing, kept my Boston apartment with my college roommates, and worked a series of part-time jobs while searching for the opportunity that would launch my career.
But within a year, some strange things started to happen. I went out for a run and was totally exhausted after less than a mile; while moving some college buddies into a new apartment, I had to stop several times while carrying a chair up one flight of stairs. I thought I was just out of shape.
Besides, I had just landed a full-time job as a marketing analyst for Visible Measures, a company that specializes in online video advertising. The company was growing quickly—it had 40 people when I started, 160 now. I was paid to make stories out of data, which I loved. The world was at my fingertips.
Then it happened. That first fall.
The world was at my fingertips all right—but that was because I was on all fours in the middle of the sidewalk with my roommate asking me what on earth was going on.
Becoming DisabledI was scared. Once you start falling, everything changes. I could no longer go for long walks through the city; I could no longer live in a second-floor apartment with my friends. Soon I was falling every other week. Every pair of jeans I owned had holes in the knees.
At first, I could still get up on my own, but after a year, I needed someone to help me. I could no longer take the Green Line. I had to get leg braces. My friends would call me to go out at night, but then I’d realize the club had a staircase and I couldn’t go. The city had become a prison.
One icy cold day, I was struggling to get to work and it hit me all at once—you’re disabled. It was too much for me to handle. I went to my manager to talk about it and just started crying. I guess you could say I had a nervous breakdown. My throat closed up; I couldn’t breathe. I had to take a week off.
Gaining PerspectiveThen, in February 2013, a co-worker died of cancer. She was just 24 years old. I had worked with her for two years and we were good friends. She never let on how serious it was.
That really put things into perspective. I still had my health. Countless people battle life-threatening diseases, yet keep a positive outlook. I realized that all the energy I was putting into sulking should be put into becoming part of the solution.
I joined the Jain Foundation, a research and advocacy organization for people with my form of muscular dystrophy. I told my story. I participated in research studies and conferences. I realized that what we all want most is for people to understand. It’s a relief when you have that connection—finally.
I’ve learned a lot about life. Things are still bad. I’m not completely over it, and won’t be until I’m cured. But on a daily basis, I see how awesome people can be. I’m closer to my friends; complete strangers offer to help me carry things.
I learned that doors may close for you, but doors are also opening, if you know where to look for them.
Everybody’s dealing with something. You may be fully able, but going through a painful divorce; you may have a full life, and then find out you have cancer; you may be able to afford everything you want, but be lonely and have no purpose in life.
Everybody’s going to get knocked down by life. We just have to learn how to get back up.
Chris Anselmo’s blog is at transitions.mda.org/profile/chris-anselmo.