I was going to write an end-of-decade wrap-up last week. I was, I swear. Then I kept procrastinating, and procrastinating, and procrastinating, and next thing I know, it’s a new decade.
I have to admit, I am not a big fan of contrived wrap-up posts. I tend to write only when inspired, which is on average about once per month. I don’t like to write just to write. But I had to at least acknowledge the conclusion of the 2010s. The decade was only about a third of my life, but for all intents and purposes, it was a lifetime.
At no point in the 2010s was I asymptomatic. It’s hard to wrap my mind around this fact, but I dealt with symptoms of my disease for the entire decade.
I can no longer remember what it was like to have full mobility, with no second thoughts about walking or running or climbing stairs. I don’t remember what it’s like to live spontaneously. So much has changed in just ten years:
- At the beginning of the decade, in 2010, I was living in Boston. In 2020, I am living at home with my parents in Connecticut. (The irony is, I spent all of 2010 working my tail off trying to ensure that I’d be able to stay in Boston and not have to move home.)
- In 2010, I walked 1-2 miles per day to and from work. In 2020, I say a prayer of thanks when I make it from the living room to my bedroom without falling.
- In the 2010s, I fell more than 50 times. I’ve been keeping a daily journal of my strength since 2012 so the number is accurate. It seems mind-boggling. 50 times my body has given out and I’ve fallen to the ground in a heap. I’ve hit my head on walls. I’ve cut open my knees and torn my jeans. One time I fell, got up, then fell again five minutes later and couldn’t get up. I’ve fallen into open dishwashers and in the middle of a street. It’s a miracle I’m still walking.
It has been a decade of frustration, fraught with intense bouts of bitterness and depression. More than once, I have looked at the success of my friends, and instead of feeling joy for a wedding or for a new child, I feel jealous. That’s no way to live.
This disease has upended my life. Doors closed in my face. Dreams disintegrated before my eyes. That carefree feeling of endless possibility, gone.
I look back and am so thankful that I never saw this coming. I was diagnosed in 2004, but only started experiencing symptoms in 2008. I had a four-year head start on it, and rather than dwell on what was to come, I stuck my head in the sand. I didn’t want to know my future and didn’t have any desire to research the condition. As long as I was asymptomatic, that was all that mattered.
So yeah, the 2010s have been difficult.
But in a weird way, this disease was also the best thing that could have happened to me. I’m serious.
In 2010, you see, I was also someone that was naive, self-centered and low on confidence. I got into arguments about trivial matters, had no real plan or direction for my life, no overarching purpose. I had stopped going to church.
I was immature.
It was in the 2010s that I grew up. Every hardship I experienced was a step forward in the maturation process. There were many lows, but even more highs:
- I lost my physical strength, but I grew in my faith. I learned to trust God and in return, I found out just how strong I was.
- I began writing about my disease journey, and it opened up more doors than I can count. I started this blog and had several articles published in newspapers and magazines.
- I have been fortunate to attend several healthcare conferences. In doing so, I’ve met other individuals living with muscle disease and researchers trying to find a cure. The connections I’ve made have been priceless.
- I’ve done a lot of traveling. I have been to Washington DC several times, Philadelphia, Dallas, Chicago, Orlando and Charlotte for conferences. I spent a week in Boston last year for work. This year, I’m going back to Orlando, back to Boston, and heading to Cleveland for the first time.
- Professionally, I have come a long way since I struggled to scrape by in 2010. At that time, it was the height of the recession and jobs were tough to come by. I bounced around a few jobs before finding a great role at Visible Measures, where I worked for three-and-a-half years before business school.
- In 2014, I left Visible Measures to get my MBA at Boston College. It was a huge risk. I was falling regularly and using crutches by this time, and left a regular paycheck behind to go to school full-time in the hopes of transitioning to the healthcare sector. I didn’t know a single student in the class going in. All my insecurities from growing up came rushing back. Would I fit in? Or would I just be the disabled guy in the group? Thankfully, my classmates welcomed me with open arms, drove me to and from class every day, and on occasion, picked me up off the ground. I had a wonderful two years and graduated in 2016.
- Today, I have a great job working for MDA in a role that challenges me every day but also gives me great meaning.
- I have developed a fondness and proficiency for public speaking. I have spoken to many different audiences – church youth groups, doctors, politicians, other patients. At many of the conferences I attend, I am part of a panel. At the NORD Breakthrough Summit in 2018, I was part of the keynote opening panel in front of 900 people, which was a tremendous honor. I have come a long way from the child who, when asked to do show and tell in kindergarten, started screaming and (true story) ran out the front door of the school, across the parking lot and into my mother’s arms.
- Speaking of my mom and dad (also known as “my roommates” when I need to impress a stranger), I have grown so much closer to them in the last ten years. Our current living arrangements are born of necessity. They are my primary caregivers and I rely on them to do just about everything for me. We butt heads from time to time about the length of my beard, why I haven’t submitted my work expenses yet, or why I haven’t showered in [number redacted] days, but for the most part, we get along great. They are my best friends and I am thankful to have this extra time with them.
- I became an uncle twice!
- In addition to my parents (and sister – haven’t forgotten you Jen!), I have developed a supportive network of extended family and friends. Most of my friends today I met in the 2010s. They are people who have become some of my best friends, and who have been with me through thick and thin. I am especially proud of this development, because I didn’t have a lot of friends growing up. I was introverted, painfully self-conscious, and never gave myself a break or the benefit of the doubt in social interactions.
The 2010s, by and large, were not fun. But they sure were meaningful. I found a purpose for living, which makes what I am going through easier to endure. Not easy, but easier.
I wish all of you health, prosperity, and a return to sanity in the coming decade. And for those of us impacted by muscle disease, I hope that by 2030 we can jump out of our chairs and give each other a hug and a high-five.
Maybe a chest bump too, for good measure.