I turn 35 this week. Yikes! I am not sure how it happened. Well, I know how it happened but I am more surprised how quickly it happened. Three-and-a-half decades on earth.
Part of me still feels like a kid. I still look at the world with a curious mind. I love sports and ice cream and staying up way past my bedtime. My dream job is still to build large Lego displays all day.
On the other hand, I feel like an old man. I am an old soul to begin with, but this disease has only exacerbated my curmudgeonness (curmudgeoneity?) Staying up way past my bedtime now means going to bed at 11:30. One beer and I get a massive headache. I can’t name any song past 2015. That sort of thing.
But most striking, I feel like an old man because I actually feel like an old man. My body, once able to win hurdles races and walk for miles around Boston without breaking a sweat, is now in constant pain. I can no longer walk, and can barely stand, with assistance, for more than a few seconds.
This has been hard to reconcile with my age. 35, going on 85.
MDA recently launched the Quest Podcast, hosted by Mindy Henderson, our new Editor-In-Chief of MDA’s Quest family of content. This podcast will explore issues affecting individuals living with neuromuscular disease and those who love them.
I had the pleasure of being interviewed for the inaugural podcast episode, “The Beginning: Receiving a Diagnosis”. It was a great conversation about what it’s like to receive a neuromuscular disease diagnosis, and how to deal with what comes next.
You can check it out here. Let me know what you think!
The beginning of the COVID-19 pandemic feels like yesterday. The calendar, however, says otherwise. March 2020 is now almost a year and a half ago. Although the origins of COVID can be traced back to late 2019, the world shut down in March, once it became clear that this was no localized outbreak, but a worldwide menace. It changed my life. It changed all our lives.
The pandemic has been a tragedy. It has been a grind, in every conceivable way. In the midst of great suffering, we have been forced to confront what is truly important in life.
Some good news after that downer that was my last post: I am finally done with the first draft of my memoir! The bad news: it currently checks in at 705 pages.
Fortunately for you the reader, the final product will not be 700 pages. I wouldn’t put you through that. I want you to buy the book after all. And enjoy it. And then recommend it to your friends. You probably don’t need to know what I ate one Wednesday night in 2012 (a burrito, for what it’s worth). A lot of the draft is blabber that needs to be cut down. Some of it serves as a placeholder to remind me what I was doing at the time, that I’ll eventually take out.
I just wanted to let you know about an upcoming panel that I will be on to commemorate World Rare Disease Day. The WEGO Health Patient Panel is taking place on Friday, February 26th (tomorrow) at 12pm Eastern.
I will be joined by two other patient leaders in the rare disease space, Guadalupe Hayes-Mota and Lindsey Kizer.
On February 2, the world lost one of the heroes of the COVID-19 pandemic: Captain Sir Tom Moore. You might remember him from the early days of lockdown, when he made news for walking 100 laps in his back garden to raise money for the UK’s National Health Service (NHS).
When he began his endeavor, his goal was to raise £1,000 by his 100th birthday on April 30. Instead, he raised nearly £40 million.
Watching Captain Tom confidently grip his walker and amble around his garden was one of those hopeful, optimistic sights we clung to during those early weeks of the pandemic. It was such a simple story – an elderly man, a garden and a daily walk – but one that struck a chord in us all.
On Sunday afternoon, I received a text message from my sister: Alex Trebek had passed away.
It was news that I had been dreading for a long time, but knew was inevitable. Nonetheless, it came as a surprise, even during a year of unpleasant surprises. I figured if anyone could survive for years with pancreatic cancer, it was Alex.
I call him by his first name because, let’s face it, to millions of people, including myself, he was family. He entered our living rooms every night and provided us thirty minutes of escape from the worries of the world. That is no small accomplishment in this day and age.
His consistency is what made him stand out. You knew what you were getting every night. Even in the midst of cancer treatments that would have broken the strongest among us, he never missed a day of work, taping right up until the end. And the quality of his hosting never diminished.
On a purely selfish level, I held out hope that I would meet him someday. It is no secret to my friends and family that I really want to be on Jeopardy! Part of the reason was to share a stage with Alex Trebek. I could have finished a Wolf Blitzer-ian $-4600 and it would have still been a thrill to stand behind the podium and take my shot against the best and brightest.
I will never get that chance, but my disappointment is a small trifle compared to the sadness of the moment. This is not just a loss for me, this is a loss for humanity. Alex Trebek was a national treasure, an irreplaceable exemplar of virtue in an age where decency and authenticity are hard to come by. Many times contestants fell flat on their face, and instead of saying “you clearly didn’t belong here,” he would say “it just wasn’t your day.” He was our biggest cheerleader.
However, what makes Alex Trebek stand out, even more than his virtue, was his humor. That was my favorite part about him.
Where do we start?
There’s this clip. And this. There’s the way he said genre. And the way he owned Conan O’Brien. He also was an acclaimed rapper.
Whoever replaces Alex Trebek will have enormous shoes to fill. They will never be Alex, but it is important that they don’t try to be. No one can replace him. But the show must go on. He would want it that way. He wouldn’t want a pity party.
Tonight, I watched the newest episode. There are only 30 or so episodes left. It hasn’t sunk in yet that he’s gone. When the last episode airs, and we enter the great unknown, it will be an emotional end.
But, despite the sadness, there is the satisfaction of a life well lived. I’m sure he is having fun (or pulling out his hair) reuniting with the SNL Celebrity Jeopardy crew right now.
I hope you are all staying healthy and have been able to enjoy the summer weather despite the pandemic.
I am happy to announce that the Ralph and Theresa Anselmo Resilience Award is a go for 2020!
Thank you so much to everyone who has supported it the last two years. Together, we have been able to help five(!) students registered with the Disability Resource Center (DRC) at Northeastern University with living expenses, and in the process gain a little peace of mind.
To those unfamiliar with the award, here is a 2018 news article from Northeastern that talks about why I started the award:
This year, my goal is to fund two $1,000 awards for students registered with the Northeastern DRC. I waited a little longer this year to announce the award as I waited for additional information on what Northeastern planned to do for the upcoming year. As it stands now, they plan to have students on-campus, with additional protocols in place to keep everyone safe.
Even with the safety precautions, however, this is going to be a difficult year for Northeastern students, as they try to navigate classes, find a job/co-op, and live in the middle of a major city during a pandemic. In speaking with Northeastern administrators, they have said that this has been an incredibly stressful time for students and faculty. My heart goes out to them all.
As a result, this award will be more impactful than ever. Any amount of support you are able to provide is greatly appreciated, even if it’s just sharing the GoFundMe link with your network. I know times are tough. No amount is too small!
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.