I wanted to share a piece that I wrote a few months ago, and had intended to share before the craziness of the last couple months. However, I figure it’s more relevant now than ever!
This is a story about my spiritual journey – the good and the bad, the ups and the downs. Faith has sustained me in some of the darkest moments of my life. Without it, I wouldn’t be where I am today. I wouldn’t have peace. I would be a rudderless ship on a stormy sea, devoid of hope. It’s as simple as that. But the path to get to this point was not an easy one.
Please share with anyone who might benefit from hearing this message.
I hope you are enjoying summer and staying safe (or if you are in the Southern Hemisphere, enjoying winter). Even with COVID-19 wreaking havoc all over the globe, it is important to enjoy the little things when you can. For me, going outside is what keeps me sane. Not that it’s stopped me from talking to animals, but that’s another story.
A few quick housekeeping updates today. I just wanted to let you know that I’ve re-organized and added a few links to the right-hand side of the front page of this site. Some of the links no longer worked, so I’ve removed those as well.
Here are a few new links to highlight:
Optimize Yourself Podcast – I was honored to speak on Zack Arnold’s podcast in 2018 about my personal journey and to provide advice on dealing with adversity when life gets tough.
STAT News – On a whim one weekend in March, I wrote a letter to healthcare providers, during the height of the outbreak here in the northeast. My admiration for all healthcare workers, from doctors and nurses to janitors and front desk staff, remains just as strong as ever. The longer this goes on, the more we are going to need to support them once it’s all over.
I also have a couple of speaking engagements coming up this weekend, which is exciting. I always enjoy the opportunity to share my story. Although this is a small concern compared to everything else going on in the world, I really miss traveling to conferences. I miss speaking in front of live audiences. I miss meeting new people, seeing familiar faces, eating good meals, learning new things, and of course, the free swag.
This year, we were scheduled to go to Orlando, Cleveland, DC and Boston. And with the birth of my nephew last week (!), we would have gone down to North Carolina to see him. But unfortunately, that won’t be happening anytime soon.
2020 has made clear that life doesn’t always go the way we expect. Life often gets in the way of our hopes and ambitions, and we realize that everything we took for granted was fleeting all along. “When humans make plans, God laughs.”
But, life is all about how we respond to challenges. One such adjustment we have all had to make is transitioning to a virtual environment. Fortunately, several of these conferences are still taking place, and the panels I was scheduled to be on will be virtual instead. The only downside is I will have to wear a collared shirt and comb my hair. And maybe take a shower.
This weekend, assuming I can solve the challenge of looking like a real human being, I will be speaking on two panels. On Saturday, I will be participating on the Drug Discovery Roundtable at the MDA Engage LGMD Symposium, an online, one-day event focused on the latest research and clinical advances in Limb-Girdle Muscular Dystrophy. I am excited to share my perspective on how patients can participate in clinical research during this exciting time in LGMD drug development.
Then on Sunday, I will be participating on a panel for the NORD Living Rare Forum. This is the event that was originally going to be held in Cleveland this past May. I’m glad that the conference is still taking place, even in virtual form. NORD conferences are always a great time. The title of my panel is “Psychology of Rare: PTSD, Depression, Evaluation, Diagnosis and Therapy”, a heavy topic but one that is relevant to the rare disease community. It is a topic I know well, for better or worse, and I am confident that it will be a valuable discussion for all attendees.
All in all, I am keeping busy to the best of my ability. I am hoping and praying that we will soon be able to see one another safely again. In the meantime, please stay safe and healthy.
That is probably the understatement of the year. It has been an awful last few months.
Right when we start to think we have the COVID-19 pandemic under control, the enduring virus of racism and injustice comes back to the forefront. It may get temporarily overshadowed by other news stories from time to time, but let’s face it, it never went away. It is a scourge we have dealt with as a country for hundreds of years.
It is hard to put into words the sheer horror of watching George Floyd murdered on video, his life expiring in agonizing fashion for all the world to see. It is not an exaggeration to say that it is the most disturbing video I have ever watched. I was left without words, but many emotions. Horror. Sadness. Frustration. Despair. Anger. Lots of anger.
In times of tragedy, words disappear. I’ve wanted to write something for weeks, but everything I wrote felt incomplete. It still does. This is the best I can do.
When I lived in Boston, it became a running joke that I was an accidental trend-setter. Every neighborhood I either lived or worked in became popular as soon as I left.
In 2008, I lived in an absolute dump of an apartment on Boylston Street, right behind Fenway Park. (It sounds cool on paper but trust me, it was a dump.) A year later, I moved out, and almost overnight, luxury apartments and restaurants popped up out of thin air.
In 2010, I was working for Thomson Reuters in Boston’s Seaport neighborhood. At the time, the building complex I worked in, a cluster of 100+ year-old brick buildings, was surrounded by lifeless parking lots. There were only two or three bars nearby. I left to go to another job, and once again, a new neighborhod pops up out of thin air, and is now one of the busiest places in the city.
Same thing with Oak Square, Brighton and Central Square, Cambridge.
I hope you are all staying safe and healthy during this unsettling time.
I find myself in a perpetual state of stress and anxiety. I have let go of the outcome and am trying to focus on what I can control, but it is easier said than done!
One of the ways I deal with anxiety is to write. It is my outlet. Lately, I have been thinking about all the healthcare providers I’ve interacted with over the years. Many of them are likely on the front lines right now, exhausted, but purpose-driven.
I see people applauding healthcare workers on TV every night. I live in a pretty remote area, so I’d be clapping to squirrels and birds (and possibly a roaming bobcat). To show my appreciation to healthcare workers, I decided to write a letter instead.
Although Rare Disease Day (Feb. 29th) has come and gone, the afterglow remains. It is one of my favorite days of the year now, right up there with Christmas, Easter, my birthday, and any day when I have a fantasy baseball draft.
I always try to attend or take part in a Rare Disease Day event when possible. This year, I had the honor of participating on a panel with my fellow rare disease advocates at MassBio’s Rare Disease Day celebration on Friday, February 28th.
It was a whirlwind of a day, but tremendously gratifying. To be in a room full of rare disease advocates, family members, state representatives, industry and nonprofit leaders, and other stakeholders was an empowering experience. We represented dozens of different diseases, but shared one purpose: to celebrate those living with a rare disease and to raise awareness for the thousands of diseases that often are forgotten and overlooked.
Monday marked the seven-year anniversary of the passing of my former coworker and dear friend, Carly Hughes. It’s hard to believe that it’s been that long. I had to double check. But it’s true. Seven years.
I was afraid that as the years passed, I would forget her. Although I may not remember exact conversations, I remember how she made me feel. She always made me laugh with her pranks and tall tales. She also knew how to get under my skin, in a way that was both effective and non-threatening. I still laugh thinking about how mad I got when I came to work one day and she had turned my desk around to face in the opposite direction.
Carly was a caring soul, one who always looked out for other people. There are many stories of her heroic dedication to her friends. Most of all, she knew how to be there for someone going through a tough time. She understood the importance of physical presence in an era when we live our lives behind our devices.
In the process of writing my book, I came across notes and old emails that helped take me back to 2011, when she joined Visible Measures and our friendship took off. By jogging my memory, these notes allowed me to live in the moment, as if it were happening all over again. I still to this day have not seen anyone drink a large Dunkin’ Donuts Iced Coffee as fast as Carly.
I still think about her often. Her passing feels like a lifetime ago, but I’m happy that the memories remain, as does her legacy. Words can’t adequately express what she’s meant to me. (I tried.)
There is a foundation named in her honor, and on the website are several stories about her that will warm your heart.
I’ve accepted that I’m never going to understand how someone so full of life could be taken from us at 24 years of age. Only God can answer that. But I’m happy to have her as a guardian angel, watching over me and giving me encouragement when I need it.
For as long as I can remember, I have weighed somewhere between 155 and 160 pounds. I rarely checked my weight growing up, as it wasn’t a major concern. If anything, I was frail as a kid. The only reason I knew my weight was beacuse it was part of my annual physical exam.
In the last three years, however, I have slowed down considerably. I sit in my wheelchair all day and barely walk anymore. As a result, to put it nicely, there is more of me now than there was three years ago.
My body image doens’t really bother me. I am more preoccupied with my mobility than how I look. However, as one chin became two, it is undeniable that I’ve put on considerable weight. It is concerning. In the last three-plus years, I have put on 25 pounds. That is not ideal.
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: Continue reading “Crossroads”→
The notification that I had been dreading for five years popped up on my phone Monday afternoon.
Pete Frates, ALS advocate who helped turn the ALS Ice Bucket Challenge into a worldwide phenomenon, had passed away.
This news did not come as a surprise. But regardless of whether or not it was expected, the news pierced my soul. It hurt. I felt like I had lost a good friend, even though I never met him.
I had followed Pete’s story ever since I first learned about the ALS Ice Bucket Challenge in the summer of 2014. Even as his physical condition deteriorated over the years, his spirit remained defiant. His perseverance through hardship was the example I needed during an incredibly difficult time in my life.