It has been far too long since my last post and I apologize for that! But at least this time I have a good excuse. I have been hard at work on a new writing project which I am excited to share today, called Hello, Adversity.
Hello, Adversity is a Substack newsletter about how to build resilience in a difficult world and also explores the role adversity plays in society. A lot of the source material is drawn from my personal rare disease journey. Hello, Adversity is going to be more about sharing different resilience strategies than my personal story per se. That is why I am going to keep Sidewalks and Stairwells, so that I can continue to have a space to share life updates and talk about my personal journey.
Hello, Adversity is something I have wanted to create for a long time. I really hunkered down over winter vacation to get it up and running. My motivation is to create the resource I wish I had found in my lowest moments when my world came crashing down.
It is free to subscribe. When you click on the link, it will ask for your email address. If you choose to sign up, future posts will show up in your inbox every other Wednesday. I will also be sending out a weekly Saturday roundup email of interesting resilience-themed links and news stories.
I’d love to know what you think of the new site, and if anyone else might benefit from it, please feel free to forward it along!
The link once again is HelloAdversity.substack.com.
When I took a break from my blog back in February to focus on my book, I said that I would still write a post from time to time. But I didn’t mean for it to take four months!
Well, I’m back. I hope you are all doing well and find yourselves returning to pre-COVID activities. This world is in desperate need of more in-person connections and conversations. Social media is its own form of isolation and is not an accurate representation of the real world. There’s nothing quite like talking to someone in-person and pretending to listen.
I am just completing a two-week vacation. It was a staycation, but relaxing nonetheless. I live five minutes from the ocean, and there is nothing as relaxing as seeing the waves rolling onto the beach and feeling the warm breeze off the water.
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.
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.
He listened for two minutes then scurried away. Even animals don’t want to hear about 2020.
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 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.
Oops.
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.
Why did I write it? In the last few weeks I’ve had conversations with friends who are dealing with job uncertainty in some way. A couple have lost their jobs, and several others feel dissatisfied in their current position or are fearful of what the future holds.
Of course, as I’ve written about many times on this blog, I underwent my own job-related challenges last year. Considering my goal in 2019 is to write more advice-related posts that draw on my life experience, I figured this was a good place to start!
Let me know what you think and feel free to share with anyone who might benefit from it.
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?
When I started business school in 2014, I knew that upon graduation I wanted to work either for a nonprofit organization whose mission is to find a cure for muscular dystrophy or for a pharmaceutical company developing a drug that could one day help my condition. I wasn’t as worried about what function I’d perform, so long as I bought into the organization’s mission and I felt I was making a meaningful contribution. I’ve always believed that it’s better to have the wrong role at the right organization than vice versa.
It took a little longer than I had hoped, but I am happy to announce that, two-and-a-half years after graduating from Boston College with my MBA, I have found the job that I was looking for. The job that made all those nights studying for exams, all those presentations and networking events and job interviews, worth it. On August 1st, I started full-time at the Muscular Dystrophy Association (MDA) as a Market Intelligence Manager.
Sidewalks and Stairwells 
