September 30th is International Limb-Girdle Muscular Dystrophy (LGMD) Awareness Day. It is a day to educate and bring attention to a group of similar conditions that affect the shoulders, hips, arms and legs. It is also a day to celebrate LGMD patients, their caregivers and family members.
I have LGMD type 2B, also known as dysferlinopathy and Miyoshi myopathy (actually there’s subtle differences between them, but for all intents and purposes, they lead to roughly the same outcome.) As of this writing, there are more than 30 subtypes of LGMD identified. They actually ran out of letters in the alphabet, so they are beginning to switch over the classifications to D1..2..3.. and R…1..2..3.. (D for dominant and R for recessive).
It is not the easiest disease in the world to live with. That is probably an understatement – it is quite difficult! You only have to look at my other blog posts to see what it’s been like to live with a weakening body. Yet, despite the difficulties, I have had the chance to meet others living with the various LGMDs and it has made all the difference in navigating the ups and downs of this condition. Many members of the community are my role models, and I try to be that to others. They are what make this day so special.
There are many resources to learn more about LGMD. The best aggregate resources are:
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!
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.
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.
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 just want to wish a happy and relaxing Thanksgiving to you and your family. Unless you are in charge of the food or despise your in-laws. In that case, my condolences.
I’ve had some writer’s block recently, but figured I’d write a quick post and provide a few links and updates:
My travels have officially wound down for the year. In 2019, I attended conferences in Orlando, Philadelphia, Chicago, Boston and two in Washington, DC. We drove to all of them! Which ties in well with why I was in DC. In October, I spent 2 weeks in DC attending both the MDA Public Policy and Advocacy Confernce and the NORD Rare Summit. The MDA conference was all about policy, and one of the issues we discussed at length was air travel accessibility (or lack thereof). I wrote about my experience at the MDA conference here.
Recently, I was profiled on the American Neuromuscular Foundation’s website. Also got the chance to shamelessly plug the work of my friend Monkol Lek.
Rather than write a new list of all that I’m thankful for, here is my list from last year. It is still relevant today, although this time I’d rank the socks and space heater higher. God. Then family and friends. Then warmth.
Speaking of lists, I have updated my list of Role Models, which was about a year out of date. I know there are many more to add, but I am about ready to take a nap and my short-term memory is MIA.
My friend and former boss Adrienne Harper founded an organization called Bundles of Joy (BOJ), in Westchester County, NY. They are doing great work! If you are looking for an organization to donate to this holiday season, BOJ provides essentials like diapers and clothing to vulnerable families in the area. So many families are in need of the basics, and just a little help can make such a difference in their lives.
This article about friendship really resonated with me. Certainly got me thinking about my own friends and how I can be a better friend.
Happy Thanksgiving, from the lurker.
(Seriously though – where are you supposed to hang up a giant photo of yourself?)
Over the past few months, several people have asked me if I am going to write a book about my patient experience. Although my natural, self-effacing reaction is to think that I am the most boring person in the world, when I take a step back and assess the last eight years of my life, I realize that I have been through a great deal physically and emotionally. There is a story in there worth telling, even if it only resonates with a niche audience.
The truth is, I’ve always wanted to write a book, but I never thought I’d write a memoir. I’ve always had fictional stories running through my mind, but it wasn’t until recently that I considered writing the most truthful story I know – my own. I have been hesitant to get started, because the task seems so, enormous. Writing a book is an endeavor not to be taken lightly. It will be time-consuming, and will require a healthy dose of patience mixed with frustration, as I try to properly convey complex feelings. It will take me back to times that I’d rather forget, and experiences that still send a shiver down my spine.
I have been hesitant to get started, but I’ve been thinking a lot about it, no question. Recently, however, I got the final nudge I needed to decide that yes, this is something that I am going to do, no matter what it takes.
The final straw was a memoir I read this past week, When Breath Becomes Air, by Paul Kalanithi. It is the story of a 36-year old neurosurgeon coming to terms with a diagnosis of Stage IV lung cancer, after spending a career at the intersection of life and death. The book made a tremendous impact on me, and judging by its success (25 weeks and counting on the New York Times Best Seller’s list), it has made an impact on many others as well.
The way he told his story – honest, raw, vulnerable – left an impression. That’s the power of storytelling. Although my disease is not life-threatening (thank God), When Breath Becomes Air forced me to think about my story – what I wanted to tell, and how I wanted to tell it.
So that’s what I’m going to do: I’m going to write a book. It’s an exciting thought but also one that I will need to repeat over and over again to keep myself on track.
That’s the caveat – I am not always the best at following through on things. It’s a sad truth that annoys me every day, but is part of my track record. For example, I remember when I started this blog I was adamant that I would post every few days. Didn’t happen. I told my entire business school class at orientation about the screenplay I was writing. Never finished it (or to put a more positive spin on it, I am waiting for it to write itself). Writing a book is a process; a long, arduous process. I can easily see myself getting discouraged and abandoning it halfway through. I hope that’s not the case, but it can’t be discounted.
If I finish, sorry, when I finish, will it be a Best Seller? Although many people are motivated to write a memoir for this reason, let’s face it, it’s highly doubtful. Success, though, should never be about books sold, especially when you are writing your own story. Instead, a true barometer of success should be in the number of lives positively impacted. I don’t pretend to have the most inspirational story in the world – that’s something I’ve always said – but judging by the reaction to my writing and my public speaking, I have at least figured out how to tell it in a compelling way. My experience is going to resonate deeply with some, and it might just be a good, casual read for others. Some will read a few pages and abandon. I’m ok with that.
But let’s not get too carried away daydreaming at the moment. I can’t start dreaming about who will read my book if I don’t write it. I have to break it down into manageable pieces, into intermediate steps. How will I finish the story? Should I self-publish or hire a literary agent? Those are questions for another day. My first goal, right now, is to get my story – the chronological bare bones of my story – onto the computer. Then I can expand on some events and cut out others. Before I know it, a story with a coherent theme and structure will begin to take shape.
This has certainly been an interesting time in my life. The last four months – heck, the last sixteen months – have been a complete blur. That is business school after all. That’s what everyone told me would happen. The last sixteen months have been a whirlwind of classes, exams, social events, and conferences. It has been full of sickness (thankfully not norovirus), weakness, laughter, stress, exhilaration and frustration. I even became a New Yorker for a summer.
Through it all, I have managed to stay afloat, although each semester it seems to get tougher. I remember back in September it was especially harrowing, so much so that I wondered how I would ever make it to winter break. Well, here I am – battered, bloodied, but otherwise unscathed.
When I was home for Thanksgiving I was almost through the madness, but faced another two weeks of final exams, papers and presentations. Thankfully, I still took some time to read for fun. I am a huge history buff, especially the Civil War. My mom brought down a few books I had on the subject that were collecting dust on a bookshelf. They provided a welcome escape.
One book was on the battle of Shiloh, one of the bloodiest battles of the Civil War. It was 350 pages, but I flew through the book in no time. It was fascinating to think that the Union army under Ulysses S. Grant could be caught so off-guard by the Rebels. The situation got so bad on the first day of battle that they were nearly driven into the Tennessee River and forced to surrender.
What Grant did next helped motivate me to think of my challenges in a new light. His army was routed on the first day, but it was not defeated. There is no question he shares a lot of the blame for being unprepared in the first place, but his reaction to his circumstances helped change the face of the battle, and ultimately the war. Instead of retreating across the Tennessee as his subordinates pleaded, he decided to fight back and surprise the enemy the next morning (it’s always an easier decision when you receive overnight reinforcements).
The Federals surprised the Confederates and drove them out of all the land they conquered the day before. By the end of Day 2, they had recovered all their lost camps. The cost? Over 23,000 casualties. The Battle of Shiloh was vicious, but it showed the power of keeping cool when everything is going wrong, and of taking bold risks when the situation dictates prudence.
Now, I would not equate what I am going through to war, not in the least. But it is a struggle. Reading about the battle, I almost felt like I was being pushed relentlessly back by adversity to the brink of failure. I had no choice but to respond. I needed to complete my classes. I needed to network and find a job. Failure is not an option for me. I had to push back, and thankfully I was able to. Now I am on break and can rest for a month, although the struggle is far from over.
That’s not to say the last four months have been all sour grapes. In fact, this period of turmoil has been instrumental in forcing me to think about what I really want to do in life. Not what types of jobs I should be getting with an MBA, but what I really want to do. A lot of the jobs posted I haven’t been able to get my heart into, even though they are great positions. Through my circumstances, I have come to learn and to appreciate that I am on the road less traveled, as Robert Frost would say. I have been given quite a unique hand in life. Thankfully it could be much worse, but my disease is an unrelenting nuisance.
Because this condition is so rare, oftentimes I feel like I am alone. I do my best to explain my situation to others, but I still feel like there is a disconnect that can only be bridged by having someone walk in my shoes, and I wouldn’t wish that upon anyone. The only compass I can rely on is the one inside of me. There is no blueprint for how I should live my life with this disease. Only anecdotes.
Although different, I have come to realize that although my circumstances have their disadvantages, they also have their advantages. My disease has lit a fire in me to make a difference in the world. I could easily see myself, without this disease, living a safe, comfortable life. I probably wouldn’t have even gone to grad school. There is nothing wrong with a safe, comfortable life – that is a blessing to have in this day and age. But there is something hard-wired into me that seeks a different life. It’s like I have this burning desire to do something no one else has done. I guess that makes me an entrepreneur, but I don’t feel like I am one in the traditional sense. At the end of the day I want to spend my time doing something that has a true, tangible impact on people’s lives, using my creativity to tell stories and better the lives of those who are in need of inspiration.
How this will manifest itself in my life I have no idea. Should I be a speaker? A writer? All/none of the above? I don’t know yet. I am letting the process play out while being proactive. I have my first speaking engagement in February. If it works out, it may lead to many more, and I may have my answer. Whatever the answer ultimately is, I will be comfortable with it. Long ago I stopped questioning my purpose in life, as the dots seem to be connecting every time I look back. I just have to be patient, and as I’ve said before, trust the journey will take me someplace worthwhile.
And hey, if the road gets bumpy, it never hurts to be reminded that when you are up against a river, you still have what it takes to fight your way back.