I took my final steps on May 11th, when I fell in my bathroom at home and had to be helped up by paramedics. To continue trying to walk was just too risky. Two months have passed since that day, and I have had a lot of time to think about what losing the ability to walk means for my life going forward.
I see my legs every day. I can still move my toes, bend my knees, and flex the flabby remnants of my calf muscles. I can still feel the pain of tense muscles, the ache of sore hips. I still get random itches on my feet that never seem to go away. My legs are still very much a part of my life, and I am thankful I still have them.
But in the task they were designed for, to get me from point A to point B, they don’t work. They are accessories, not workhorses.
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.
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.
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.
Thank you so much to everyone who donated last year to the first-ever Ralph and Theresa Anselmo Resilience Award. The response was overwhelming! I had hoped to fund one award and raised enough to fund two. I am so grateful for everyone’s support. It means so much to my family and I.
If you would like to learn more about last year’s recipients, Hannah and Katherine, Northeastern did a great job sharing their stories:
This year my goal is to fund two $1,000 awards for students registered with the Northeastern University Disability Resource Center. Any amount of support would be greatly appreciated, even if it’s just sharing the GoFundMe link.
I ended up raising over $2,800 last year, and the remaining $800 will be allocated towards this year’s awards. If I raise more than my goal, I will allocate it towards next year. Either way, your donation will be put to good use!
With your support, we have already been able to positively impact the lives of two students. I hope to make this an annual award that can help students for years to come!
For those learning about the award for the first time, here is the description:
The Ralph and Theresa Anselmo Resilience Award is an award that I have created at Northeastern University (my alma mater) in honor of my parents, Ralph and Terry.
The goal of this annual award is to provide monetary assistance to a student (or students) registered with Northeastern’s Disability Resource Center (DRC). Although when I attended Northeastern I did not experience any of the symptoms of the muscle disease that I am living with today, it is a resource I would have used had the timing been different. I have met a handful of students registered with the DRC over the years, and they are some of the kindest, most driven students I have ever met.
As someone living with a progressive disability, I have benefitted from the support of others who have enabled me to achieve my goals and dreams, which included going back to school full-time to get my MBA. Many people have helped me along this journey, none more so than my parents.
My mom and dad have been instrumental in empowering me to succeed, even as my physical condition has deteriorated. They provide me assistance and support without ever asking for anything in return. My resilience today in facing my disease would not be possible without their help.
In the spirit of the example set by my parents, I want to help others achieve their goals and dreams. Specifically, I want to help Northeastern students registered with the DRC. The intent of the award is to provide a little more peace of mind to the recipient, whether it’s helping to purchase a piece of adaptive equipment they may need for the classroom, or putting the award towards books or room and board. How they decide to use the funds is at their discretion.
I am a firm believer that anyone of any ability level can do anything they set their mind to. However, we are only as successful, we are only as strong, as our support system around us.
Without my parents, I wouldn’t be where I am today. It is an honor to name this award after them!
It is a one-time award of $1,000 each for two students. Any funds raised above and beyond the goal will go towards future awards. I will keep everyone up to date on how the funds are allocated.
– Any Northeastern sophomore, middler or junior year student with a GPA above 2.0.
– Must be registered with the Disability Resource Center.
– Student must provide a statement of what they plan to do with the award and why it will help them on their college journey.
How the funds can be used:
– The award can be used on anything school-related, such as: tuition, an assistive technology device, books or room and board.
I will follow up once the award has been announced. Thank you in advance to everyone for your support!
I have some exciting news! I am happy to announce that I am raising money for an award at Northeastern University, my alma mater, called the Ralph and Theresa Anselmo Resilience Award, named after my parents. The award – which may end up being two awards when all is said and done – will be given to a sophomore, middler or junior-year student registered with Northeastern’s Disability Resource Center (DRC).
You can find a link to the GoFundMe page here. Any contribution is greatly appreciated! Even if you are unable to donate, sharing the link with your family and friends would mean the world to me.
I can go from months where I don’t notice any change in my strength to days where it feels like I am weakening by the hour. Over the last couple months, another wave of weakness has infiltrated my muscles, right as I was starting to adjust to my new level of strength. I can track my decline based on the everyday activities I perform, and whether or not they are harder to do than the day before.
Lately, getting out of bed with my walker has become a chore. It requires all the upper body strength I can muster, which is not much these days. My biceps have just about shriveled away, following the lead of my triceps which dissipated a couple years back. My chest and abdominal muscles, once muscular (I’m not talking beach body, but I used to be in shape!) have been replaced by fat. I press with all my might to get up, and although I am still able to stand upright, I worry in the back of my mind about the next time. What if my arms give out or I throw out my back? It’s a long way to the floor.
There are different pieces of equipment out there to aid in the transfer and lifting process, equipment that I am going to need to entertain at some point. I also have my dad who can help me, but I can’t rely on him forever – he is going to be 70 in September and has back issues of his own. Unfortunately, every time I go through weakening fits like this, I procrastinate on getting new equipment. It is a bug in my program.
This is a continuation of my post from earlier in the week, which you can find here.
In Malcolm Gladwell’s famous book, Outliers, he talks about several factors that set high-achievers apart from the rest of the population. One of the main takeaways of the book is something called the “10,000 Hour Rule” – basically, anyone who has ever become an expert at anything has needed to immerse themselves in a task for at least 10,000 hours. This holds whether you’re the Beatles practicing to become the greatest band of all time, or Bill Gates learning to program a computer.
Although the premise has been the subject of intense debate, what is beyond argument is that the more you practice or experience something, the more of an expert you become. It’s rather straightforward.
Assuming the 10,000 hour rule is mostly true, I boldly assert that I am an expert at being a patient with muscular dystrophy. It’s an odd thing to say, but ever since it took over my life ten years ago, it’s always been on my mind. It has changed me physically, emotionally and spiritually. Many of my experiences cannot be adequately explained to the general population, no matter how much someone wants to understand.