2018: A Year in Review

2018 was a unique year in many ways. It was a year full of twists and turns, highs and lows, excitement and monotony. Considering how I started the year, to be where I am today is nothing short of a miracle.

After all, it was only 365 days ago, on December 31, 2017, that I was down on my luck. I was newly unemployed, depressed and questioning the trajectory of my life. Only three weeks before, I had made the momentous decision to quit my job as a product manager at a medical diagnostics company, unable to deal with the constant stress of a role that my heart wasn’t into. It had reached the point where I was always stressed, anxious and unable to get a good night’s sleep. What good was having a job if it was going to kill me in the process?

So there I was, limping into 2018 with some savings – not a lot – and needing to figure things out in a hurry. Bills and student loans were due and they didn’t care whether or not I was employed. In the interim, I reached out to my various professional contacts, asking around for freelance and contract work. Fortunately, I was able to piece together different writing opportunities, which would, at minimum, pay the bills. With extra time on my schedule, I also decided to work on my book – a memoir of my patient journey – with renewed vigor, which kept me busy during down times.

I knew that at some point I would have to take another shot at finding a full-time job, preferably for a company or organization working on muscular dystrophy research. That was the only “right fit” I could visualize in my mind. I could no longer afford to take a job just for the sake of having a job. That’s not to say I was picky or unwilling to put in the work. It was more an indictment on my energy level and physical health.

For the first five months of the year I cobbled together assignments, and surprisingly, loved every minute of it. Although there was still the anxiety of not knowing what the next day would hold, I enjoyed the freedom. Almost immediately, I began to sleep better and feel more energetic. I enjoyed reaching out to new contacts to have informational interviews. On the side, I stayed busy pursuing different opportunities I never could have pursued if I was working full-time, such as appearing on TV for Rare Disease Day and participating in events and conferences. Best of all, I was getting paid to write!

I had quit my job on the belief – which I admit seemed idealistic at the time –  that something better was out there for me, and that I didn’t need to kill myself working at a job I couldn’t stand. That’s not to say I didn’t have doubts. I worried that by quitting, future employers might think I was unreliable. But my quick return to health reassured me that I had made the right decision.

Then in March, I caught a break. Out of the blue, I was contacted by Natalie, who was the head of digital marketing at MDA and someone I had worked with previously on freelance writing assignments. She invited me to the MDA conference in Washington, D.C. to blog about the conference from the patient perspective. It was only three weeks away, but since I didn’t have a job tying me down, I said yes, once my dad agreed to drive me. It turned out to be an entertaining conference and an even better decision. I met many different contacts at MDA, and I didn’t shy away from letting them know that I was looking for a job. They told me maybe later in the year.

A couple months later, the dots connected. After networking within MDA, I was put in contact with Jeanne, the head of a newly-formed team at MDA tasked with building partnerships with pharma and biotech companies. I emailed Jeanne to set up time to talk. Rather than have a phone call, she suggested instead meeting for coffee near where I lived. A week later, on a park bench on the riverfront in Old Saybrook, Connecticut, Jeanne and I had a great discussion about my work background, MDA, and her new team. When she described a role she had in mind for me given my skillset and background, I was sold.

We agreed to have me start on a contract basis, to see if it was a good fit for both sides. This way, if it turned out to be too much work for me, there were no strings attached.

Almost immediately, it was clear that it was a perfect fit, and after a couple months, I was hired for the full-time role, beginning August 1st. The day before my first official day, I thought back on my journey over the past seven and a half months. I thought back to the moment I quit my previous job, how depressed and ashamed I felt that I couldn’t handle the stress. I thought that I was done as a full-time employee, that my disease had gotten the best of me. To now have this job, less than a year later, was a tremendous blessing, one that I would never, ever take for granted.

Today, five months in, I am still going strong. Although I don’t have the energy I used to have, and require a daily mid-day nap (sorry I’m not sorry), I am fulfilled in a way I’ve never been before. Hopefully someday I won’t feel compelled to work in the muscular dystrophy space because there will be a cure. In the meantime, I’m right where I need to be.

As I reflect on this past year, my journey to finding meaningful employment was the biggest development. Sure, I had my share of downs this year – I am still getting weaker, and despite my best efforts, the move back to Boston has not yet taken place. But overall, I am satisfied. I’m employed, I have my parents, my family, and my friends. I have my health. My faith has grown stronger through adversity. I have more confidence in myself now than ever before. I have everything I need.

In the risk-taking spirit of 2018, I also said yes to a lot of opportunities I might have said no to in the past. Here’s a quick recap, along with some links in case you missed an article or video:

February – Wrote an article that appeared in MDA’s Quest Magazine about the importance of having role models when you are going through adversity.

February 22 – Traveled to New Haven to appear on WTNH’s Good Morning Connecticut to promote a Rare Disease Day event I was going to be part of at Quinnipiac University. My first time on TV!

February 27 – Spoke on a panel at Quinnipiac for Rare Disease Day, where I got to share my story and answer questions from medical students in the audience. Hopefully I helped to inspire some of them to go into the rare disease field. The more doctors and researchers working on rare diseases, the better.

March 11-14 – Attended the MDA’s Clinical Conference in Arlington, VA and wrote a blog post about my experience. Also signed my first autograph.

May 9 – Had the chance to interview Philadelphia Phillies star Rhys Hoskins about his experience volunteering with MDA. A huge thrill!

May – Announced the creation of an annual award at Northeastern University, in honor of my parents, to give to a student registered with the Disability Resource Center. The response – your response – was out of this world, allowing me to fund a second award. Thank you!

June – Wrote an opinion piece for Life Science Leader magazine about how healthcare companies can help newly-diagnosed patients stay engaged with the healthcare process.

June – Appeared on Zack Arnold’s Optimize Yourself podcast. I had reached out to Zack after watching a movie he directed called Go Far: The Christopher Rush story, about an amazing man who lived with spinal muscular atrophy. I was so thankful for the chance to share my story with Zack, as Christopher’s story has had a major impact on my life.

July 10 – Wrote an op-ed for the Hartford Courant that ended up being featured both in the Sunday op-ed section and in a multimedia video on the Courant website. Very cool, but also terrifying! To think that my giant head was now in homes across Connecticut…

July 11 – A blog post I wrote about why every rare disease patient should stay engaged with the clinical development process won the Patients Have Power writing contest run by Clara Health. Outside of winning dinner with a professor in business school, I have never really won anything in my life, so this was a great honor!

August 1 – Started full-time at MDA.

August 22 – Took part in an online webinar organized by the Society for Participatory Medicine called “Translating the Patient Story into Action,” where I shared my patient story and tips for becoming a rare disease advocate. My presentation begins at around the 28:42 mark.

October 10 – Presented via Skype to Professor Lilly Sosa’s genetic counseling students at Boston University. This was especially cool since, originally, I was going to turn down the opportunity before realizing that I could do it remotely and still make an impact.

October 15-16 – Traveled again to the Washington, D.C. area, this time to appear on a panel at the NORD Breakthrough Summit called “The Next Generation of Rare Disease Advocates.” The panel, and the conference as a whole, was an experience I’ll never forget.

December 3 – Met Derek Jeter at MDA’s New York Muscle Team gala. Also had the chance to meet Mark Herzlich, a cancer survivor, Boston College alum and former linebacker for the New York Giants. Both were super nice, and more importantly, the gala raised a lot of money to support MDA’s mission. Another memorable night!

Just my friend Derek and I.
Mark Herzlich and I, in a dimly lit vault ill-suited for picture-taking.

December 10 – Northeastern announced the recipients of the award in an article on their website. I am so happy for the winners! I’m also glad I finally took this step. It was an idea I had thought about for many years, but I never had the confidence to go through with it until this year.

December 13 – I had nasal surgery for a deviated septum, meant to help relieve my incessant, painful sinus headaches. Life-changing. Will tell you more in a future post.

December 17 – Alas, my power wheelchair arrived. A bittersweet milestone, although deep down I’m excited about it. I’m even more relieved that the process is over with and I don’t have to fret about taking this step anymore. It’s finally here. It has arrived. Will also discuss in a future post.

2018 certainly had its share of frustrating moments and bad days, but overall, I feel like I am headed in the right direction. Forward, not backwards.

Which brings me to you.

If I learned anything in 2018, it’s that life is short and if something doesn’t feel right, it usually isn’t. Trust your gut. If you feel that you are at a dead-end job and that you need to make a change, or if you are wondering if you should take that big risk and go back to school, move to a new city or start your own business, do it. Maybe don’t do it quite like I did without a safety net, but at least start the process of pursuing what you feel is right in your heart. You won’t regret it.

Don’t be afraid to bet on yourself. At the end of the day, you know what makes you happy better than anyone else. Life-changing decisions will feel crazy at first. Doubt and fear may consume you and cause you to second-guess yourself. But give it time, and it just may end up being the best decision you ever make.

Happy New Year everyone!


2019 New Year’s resolution: fewer adverbs. Seriously.

8 thoughts on “2018: A Year in Review

  1. What a year you’ve had! Congrats on taking all those risks, especially the big one – leaving your job. I’m really glad it’s worked out. Thanks for kicking ass for those of us in the rare disease community. Happy New Year!

  2. Madeline Martin

    Wow, amazing year and you accomplished all with flying colors. Happy you received your power chair. Love to you and your family. God bless you and give you the strength to complete every endeavor .

  3. Love your determination and intelligence and more than anything your understanding of what your soul really needs. Congratulations on forging such an interesting path for yourself . You should feel very chuffed with yourself.
    And a power chair give such instant freedom once you accept it – I hope this is what you experienced. Here’s to a fabulous 2019 for us all.

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