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.
I hope you are having a safe and healthy start to the new year. I can’t believe it’s already February.
Brief post today. I just wanted to let you know that I will be taking part in a storytelling event on Feb. 11 called “Portraits of Resilience”, hosted by Inspire and Health Story Collaborative. (If you follow me on social media you will recognize that this is the first time I’ve called it by it’s correct name. It’s not Portraits IN Resilience, Chris. Sigh….)
Let that sink in for a moment. Tomorrow is a new year. Although the adversity we are facing won’t disappear overnight, it is still a major accomplishment to get to this point, even if we didn’t get here unscathed.
This was originally going to be a “Top Learnings From 2020” post, as I am someone who loves to make lists, but when it comes to 2020, quite frankly, I don’t know where to start. 2020 was a difficult, awful, strange year. It has been a continous learning experience. To condense it into list form feels impossible.
Where do you even start? Hundreds of thousands of lives lost. National wounds re-opened (not that they ever truly closed). The constant stream of anxiety-inducing news stories. Financial ruin for millions. Plans dashed for everyone. For the rest of our lives, we are going to look back on 2020 as a lost year. And in many ways, it was.
But that’s not to say this year was without meaning or instruction. If there was one silver lining to this 365-day trainwreck of a year, 2020 helped clarify what is truly important. It gave us time to reflect, to take stock of our lives, and see if where we are, both on a personal and societal level, is congruent with where we want to be. Reflection is not a bad thing, even if the truths surfaced are painful.
What We Value Most
For me, 2020 helped clarify not just what I valued, but why. I came into 2020 knowing what I valued – my family, friends, faith, health. And I still do value those things. But I didn’t realize just how important they are to me. They say that you don’t realize what you are made of until you encounter adversity. Well, you also don’t realize what you value until adversity threatens its existence. You don’t realize what is important to you until you face the prospect of losing it all at a moment’s notice. Until you face the prospect of profound loss, you don’t realize just how fragile everything is that you hold dear.
2020 saw one health crisis after another for my family. Given the progression of my disease, I am currently living with my parents. Four times I have watched one of them rushed to the emergency room – my father back in February, and my mother in September, November and December. On December 1st, my mother was wheeled out of our house and taken to the hospital in an ambulance, and given the severity of what had happened and how much pain she was in, I was confronted with the fact that I might never see her again.
None of these crises were COVID-related, but we had to deal with that too, on top of everything else. That night, on December 1st, when my mom was rushed to the hospital, they gave her a COVID test, and she tested positive. She had been hospitalized two weeks prior, and was exposed there (my dad and I hadn’t gone anywhere in the previous two weeks). Despite the best precautions, the virus always seems to find a way.
Thankfully, my mom had mild symptoms, and they were able to address it at the hospital, while treating her for her other health issue. A week later, my dad tested positive and dealth with moderate GI issues, and also lost his sense of smell. Somehow, I tested negative twice, even though I was in close contact with him constantly. But it was a nervewracking time nonetheless, especially as we waited for the results.
At the same time (because not enough was going on!), my cousin and her partner got it (he was in the hospital for five days), my aunt and uncle in Massachusetts got it (my aunt was briefly hospitalized), and several others I knew either had it or were exposed to someone who did. None of these groups of people interacted with one another, so the transmissions all happened independently.
During this time, I barely slept. I barely ate. I couldn’t focus, and had to take time off from work. It was the most stressful two weeks of my life.
(By the way, a quick thank you to all my friends and colleagues who reached out during this time. Your support meant the world to us. We read each and every one of your messages.)
When a loved one is in the hospital for any reason, especially for a serious health issue, what matters most in life comes to the forefront. I realized just how much my parents meant to me, and that, at the end of the day, you could have all the money in the world, or perfect mobility, or achieve fame and success, but if the ones you love aren’t around to share your life with, nothing else matters.
I am thankful to say, that after two weeks in the hospital, mom came home on December 14th. The staff at Yale-New Haven Hospital were amazing and treated her, and us, with utmost respect and professionalism, even under such stressful circumstances.
As I write this, my parents are both home (and currently disagreeing over what to have for dinner, which means they are almost back to 100%). My aunt and uncle, although still battling the virus are feeling a little bit better, and my cousin and her partner are both feeling better and back to work.
Despite those stressful two weeks, I feel like the luckiest person in the world. Trust me when I say that I don’t take any of this for granted anymore. I know that the circumstances could have turned out differently. Hundreds of thousands of families have lost loved ones to this virus, and are still in mourning. My heart goes out to all of them. Many times during my parents’ hospitalizations, my mind wandered to the worst-case scenario many, many times, despite my best efforts to shut those thoughts out of my head.
So, yeah. 2020 has been a rough one. But it has shown me, and I’m sure you as well, what makes life worth living, even in the midst of great hardship.
Turning the Page
It will be weird, and also a little liberating, to talk about 2020 in the past tense. The psychological boost of turning the page is a welcome relief, even if the adversity remains. And remian it will.
If you find that the first few days of 2021 don’t feel any better than 2020, don’t lose hope. When suffering has been this pervasive, for this long, it will be hard to feel a renewed sense of optimism from something as simple as a calendar change. But that doesn’t mean 2021 won’t be better.
It is going to take time to get over 2020. We may never fully get over it. It has been a difficult year for us all, and there is no right way to cope with the stress, fear, and the sadness. There is no correct timeframe for struggling with the magnitude of what we’re going through. You might have seen on social media how Shakespeare wrote King Lear during quarantine from the bubonic plague that was raging at the time. Although an interesting tidbit, that doesn’t mean that if we failed to be productive in 2020, if we didn’t write a novel or get in better shape or whatever, that we failed at coping with the crisis.
I consider myself a productivity nut, someone always trying to accomplish new goals, and I derailed in spectacular fashion this year. I’m not sure I hit any of the goals I set for myself back in January. For example, I wanted to lose weight this year, and although I dropped 10+ pounds on WeightWatchers between January and March, as soon as the pandemic hit, I began stress eating with the best of them. (Only to lose the weight again when everything hit the fan in December, although the “too stressed to eat” diet is NOT one I endorse.)
So don’t worry if you didn’t find yourself constantly accomplishing tasks or feeling fulfilled. The ultimate accomplishment was surviving the year, waking up each day glad to be alive. If you are still struggling with it all (and I’m right there with you), that’s ok. Know that pretty much everyone else is as well, whether or not they admit it.
Which brings me to my last point – as we head into 2021, don’t just give yourself a break, but extend that courtesy to others. We all just went through hell, and many are still going through it. We have gotten so accustomed to tearing each other apart due to our differences, real and perceived. We are all suffering. We would do well to give each other a break, give others the benefit of the doubt, and fight against the headwinds of demonization. Try to find some sort of common ground with others first, before dismissing them. This is a world devoid of grace and mercy, and that has exacerbated our suffering in 2020.
The world we want, a pandemic-free world, a more just world, is attainable. We make up that world, and it is on us to exhibit to others the respect we want others to show back to us. (You didn’t expect to make it through this without a Golden Rule reference, did you?)
I hope to see you all again in person next year. I miss you terribly. Wishing you all health, peace, and a restored sense of humor.
It is hard to believe that tomorrow is Thanksgiving. Where did the year go?
Oh yeah, it’s 2020.
I still remember the night in mid-March when the country finally came to grips with the magnitude of the crisis and began to shut down. News broke that Tom Hanks had tested positive for COVID, then maybe 30 minutes or so later, an NBA game was postponed right before tipoff because a Utah Jazz player had tested positive. The NBA swiftly (and correctly) suspended the season right then and there, which had never happened before in the history of the league. Normal life came to a grinding halt. In the coming days, employees would be ordered to work from home. Schools closed. Millions lost their jobs. And the first wave was upon us in full, terrifying force.
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.
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.