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.
With your support, we have been able to raise $9,400 for students registered with Northeastern University’s Disability Resource Center (DRC). This money has supported nine students with everyday living expenses, books, equipment, etc., providing a little peace of mind during a turbulent time.
I have heard from each of the students who have received an award and they are tremendously grateful for the support. This award helps put their mind at ease, and that has never been more important than in the past year. COVID has upended everyone’s lives, especially college students who have had to adjust to stay-at-home orders, quarantines, and remote classes. Northeastern students also have to frequently job hunt for co-op placements on top of everything else. College is a stressful time, even under normal circumstances.
This year, my goal is to fund four $1,000 awards for students registered with the Northeastern DRC. Even though we can see the light at the end of the tunnel now with COVID, we are not out of the woods yet. Students still have to navigate a difficult post-pandemic world in more ways than one.
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 am so thankful for all of your support. Stay safe and I hope to see you soon!
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.
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.