A New Life for an Old Friend

When I was three months old, my grandmother (“grammy” as we affectionately called her) gave me a white teddy bear for Christmas, outfitted with a matching red beanie and scarf. The bear and I quickly became inseparable, even if it took me a few months to grow to its size.

For reasons that will forever remain a mystery, I named him Bill. Not Teddy, or Buddy, or even Billy. Bill. An old man’s name. (Is his true name William? We will never know.) All I know about my thought process as a three-year-old was that I most likely chose that name at random, or based on a TV character long since forgotten.

Regardless of how Bill was named, he (it feels weird to call Bill an “it”) was far and away my favorite stuffed animal growing up, even after I lost his hat and scarf. Then again, the hat and scarf were a suffocation hazard, so maybe they were taken from me.

Continue reading “A New Life for an Old Friend”

The Unexpected Joys

A couple weeks ago, I had the opportunity to have my patient story recorded by Annie Brewster at Health Story Collaborative. The end product will be a 10-15 minute audio clip chronicling my journey over the last nine years, from my first symptoms to present day. It was a fantastic experience, and I’m glad I reached out to Annie on a whim after watching her TED talk.

Towards the end of our call, I asked about CommonHeath, a healthcare blog run by WBUR, Boston’s NPR station. While researching Annie’s background before our call, I noticed that she had written several pieces on the site, and was involved with curating patient stories. I asked her if my story would be a good candidate for CommonHealth, and she said it would be.

Encouraged, I reached out to Carey Goldberg, the editor of CommonHealth. One thing led to another, and, with the help of Carey and another editor, Ginger Marshall, we decided I would write about my thought process in accepting that I needed to get a wheelchair.

It’s a difficult subject to write about. First off, it’s a heavy topic, fraught with emotion. Second, it is difficult to convey, in 1,200 words, what it feels like to come to this acceptance. I could write 10,000 words on the topic and it would be incomplete.

Difficulties aside, I am proud of how the piece came out. The title isn’t my favorite, but I understand why it is so straightforward and blunt. It clearly states what the article is about, in no uncertain terms. As an opinion piece, you are either interested in reading more, or you’re not.

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My article on the CommonHealth website.

It was a thrill to see my article on the CommonHealth website and the WBUR Facebook page, sites that thousands of people frequent on a daily basis. More importantly, I was heartened by the positive reaction of other patients, and how those going through a similar situation could relate to what I wrote. The truth is, I was initially reluctant to write the article, mainly because it is a touchy and emotionally-charged subject. I know how I feel about the experience, but it is difficult to put into words. What if someone takes something I wrote the wrong way, or reads into it something I didn’t intend? Despite my initial hesitation, I decided it was a risk worth taking.

The article had a good run on social media, but, like everything else on the internet, I figured it would fade away into obscurity.

Or so I thought.

Yesterday, around midday, I was checking the WordPress app on my iPhone, casually glancing at Sidewalks and Stairwells’ page views for the day. On a good day, I usually get 20-25 views on my website. I checked the app: 200 views. I wish you could have seen my face!

Initially, I thought my site was being flooded by bot traffic. Then I saw a comment on my front page mentioning they found my site via NPR, and it hit me – my post got picked up by NPR’s social media accounts.

I checked, and there it was at the top of the NPR Facebook page, which has nearly 6 million followers. This article that I wrote, partly for my own healing, was now being read by millions of people.

The comments started flooding in. I was hopeful my article would have a positive impact on people, but part of me was nervous that there might be some negative, troll-ish comments that would make me regret being so vulnerable (I know, I know, I should never read the comments section). Fortunately, there were only a couple bad ones, and they were so comically off-base that I found them more amusing than anything. You truly can never please everyone.

By the end of the day, I had over 1,100 views. Yesterday, I had 450 more. 1,500+ in 2 days. Not bad!

I have been hoping and praying for a day where my blog, my little slice of the internet, gets seen by a wide audience. I don’t want this because I want to become famous (I am an introvert after all), rather, my hope is that the more people who read this site, the more people I might be able to help. I share my story, warts and all, because I want it to resonate with others.

I am grateful for the outpouring of support by complete strangers around the world. Overwhelmingly, the response to my article was positive. Patients shared their own struggles, and readers who were not disabled valued the perspective I brought to the table. If I can use my journey, which was once an intolerable nightmare, to inspire and inform, that is a good thing.

I hope yesterday is just the beginning, the big break I have been waiting for. I am only one person, but I know the impact one person, with the right message, at the right time, can have on someone’s life. I am here to pay it forward.

 

Reflections and Resolutions

(Author’s Note: I was originally going to write this post before the new year, but got a little distracted by this bald eagle webcam and college football…it happens.)

I always used to make New Year’s resolutions, but this year, I’m just not feeling it.

It is quite an interesting phenomenon if you think about it. Every January 1st, millions of people around the world pick something in their lives that they vow to improve. We see this one day on the calendar as a clean slate, a source of hope and renewal, just because it is day one.

Every once in a while you hear a success story. For example, I know of someone whose New Year’s resolution was to lose weight, and lo and behold, they lost 50 pounds. For the rest of us, however, more often than not, resolutions end in failure.

I know that has been the case for me. That’s not to say making a resolution is pointless. There is no shame in sticking your neck out there and attempting to improve some facet of your life. In fact, it should be celebrated! I’ve merely come to the conclusion that I’d rather not set myself up for the inevitable failure and disappointment.

This year, instead of making a New Year’s resolution, I decided to take a look back at 2016, reviewing lessons learned while celebrating my many accomplishments that might otherwise fade into obscurity without proper reflection.

2016 was a unique year for me, full of highs and lows I’ve never experienced before. Above all, it was a year of transition. As someone who likes planning and structure, I found myself begrudgingly surrendering to forces outside of my control.

We’ll start with the lows, to get them out of the way. After graduating from business school this past May, I still haven’t found a full-time job. I have been blessed with two great part-time opportunities that have kept me afloat these past few months, but the ultimate goal has proven elusive. It weighs on me every day. Financial insecurity, especially with a disability and with student loans breathing down my neck, keeps me up at night. Thankfully, I planned for this possibility, and I take full responsibility for the situation I am in, so I will rise above it.

Besides, everyone despises job hunting. Repeated, unrelenting rejection is just plain miserable. Through my circumstances, I have come to know rejection quite well, and have learned to harness it into bigger and better opportunities. But even I have my limits. Constantly being rejected for a job, or worse – not even getting back a response – is incredibly frustrating. I just have to keep grinding. I know that the perfect opportunity awaits me out there, and I’m telling you, when I finally do get hired, I will give everything I have to the company lucky enough to hire me.

But I must also confess, I have been picky with my job search. The truth is, I just don’t have the energy anymore to choose “any job”. It has to be the right fit, an opportunity where I can harness my creativity and communication skills, for a company whose mission I believe in wholeheartedly. The role also has to pay well enough to support the additional expenses that my disease will inevitably incur – such as an accessible apartment, personal care attendants, adaptive equipment, etc.

For the time being, I’ve moved home with my parents in West Hartford. I love my parents, and love being able to see them regularly, but we are all in agreement that I am destined to be on my own. I’ve been in the Boston area the last 12 years and love the city to death. It is where I belong. Despite the move, I am fortunate that I have a home to come back to, and the support that I need to stay afloat during this challenging time.

The greatest challenge in 2016? My weakening body. I lost a tremendous amount of strength last year. I finished school just in time, before my disease really started to affect my quality of life. I don’t think I would survive school in my current condition, at least, not without taking some time off to obtain additional resources. It certainly wouldn’t be impossible, but it would be significantly tougher.

For example, at the beginning of 2016, I could get out of a chair without assistance from another person. Now, it’s impossible. Unless I am sitting on a high chair, I need someone to bear hug me to get me into a standing position. At the beginning of the year I was able to go up small steps and inclines with relative ease. Now, it’s a treacherous affair, given how much upper body strength I’ve lost. Declines are just as difficult. Without upper body strength, my crutches become useless if my shoulder gives out.

I’ve also fallen several times this year, and on two occasions, injured my foot. One fall required x-rays; fortunately they came back negative. The pain lingered for weeks, however.

Look, I know what my future holds. As soon as I lock down a job, figure out where I am going to live, and get a few other things squared away, I am going to buy a wheelchair, assuming of course that an injury doesn’t force my hand.

It is time.

I am past the point where I am afraid of what others will think of me in a chair. In fact, I welcome the freedom a chair will provide me. Sure, there is a laundry list of considerations and questions that remain related to how I will adjust to living in a wheelchair, but, as a whole, I know that it will improve my quality of life. I don’t know what it’s like to walk a few blocks care-free anymore. If I can get that freedom back while rolling down the street, so be it.

So yeah, there are a few things on my mind. But you know what? 2016 was also one heck of a year. To recap:

  1. I graduated from Boston College’s MBA program in May. At graduation, not only did the pastor read a quote from one of my blog posts, I also received a standing ovation when I received my diploma, which was completely unexpected (and also flattering). I nearly fainted!
  2. My time at BC allowed me to make many, many close friends with classmates and faculty, friendships which I will cherish the rest of my life.
  3. I went to Texas. I have never been to Texas.
  4. I met my nephew Connor for the first time in August. Although born in October 2015, I was not able to see him until the summer. He is a bundle of joy. I also got to spend a lot of quality time with my niece Sophia.
  5. I finally committed to writing a memoir of my experience with Miyoshi Myopathy. Best of all, I have followed through on this commitment and am making substantial progress. I hope to have a first draft done in early 2017.
  6. I had a piece published on the Boston Globe’s STAT website in February. I was one of the first patients to ever be featured in their “First Opinion” section.
  7. I had the honor of speaking at several exciting events and locations, including:
  • The 2016 Rare Disease Day celebration at the Massachusetts State House (~400 people)
  • The Muscular Dystrophy Association’s “Fill the Boot” camp at Mohegan Sun Casino (~500 people)
  • “Speak Up” storytelling event at Real Art Ways, Hartford (~200 people)
  • The Jain Foundation’s patient conference in Dallas, Texas (~75 people) – here’s the video
  • Boston College “Bounce Back” resilience panel
  • Boston University Medical School genetic counseling class
  • Northeastern University Student Alumni Association club meeting
  • St. Thomas church youth group in West Hartford

Looking back on that list, I must say that I am not good at celebrating my accomplishments. I dismiss them too easily, mainly because I am never satisfied. Maybe that will be my resolution this year – celebrate when things go well! I dwell so much on the negative sometimes, that I forget to also savor my successes. I deserve to give myself a break from time to time.

2016 was, in totality, a very good year. Maddening and frustrating? Yes. But I made significant progress, providing a foundation for success in 2017. Whether I get a day job or live a life as a writer and traveling motivational speaker, I will not stop until I am at a place where I know that all of my struggles have been worth it.

All in all, 2017 is going to be an interesting year. I have no delusions that there will be more turbulence ahead. But I must remember, against all odds – after years of wallowing in self-pity and hating what my life was becoming – I made it this far.

No matter the uncertainty in my future, I must find a way. That is the only resolution that matters.

Craig Sager

It has been almost two years since Stuart Scott passed away, an event that compelled me to write a blog post on his impact in my life growing up as a sports fan.

Today, unfortunately, we lost another sports broadcasting icon in Craig Sager.

2016 has been a rough year for celebrity deaths, but this one might have impacted me the most. This hurt. Sager was a fixture for me growing up as I watched the NBA on TV. If Uconn basketball wasn’t playing, I was probably watching the NBA. Basketball was, and still is, my favorite sport, so inevitably over the years I have gotten to know all the sportscasters and sideline reporters who call the games.

Sager was a larger than life personality. His questions were always on point, even if his clothing choices were, let’s just say, not.

This is my favorite Sager video, an interview with Kevin Garnett who goes off on a tangent about Sager’s suit:

Although Sager’s outfits were goofy, his courageous battle with leukemia these last two-plus years was anything but. Even through rounds of treatment – including three stem cell transplants – Sager was fiercely dedicated to his job, working the sidelines even while receiving treatment. He lived for broadcasting.

Like Stuart Scott, Sager was the recipient of the Jimmy V Perseverance Award at the ESPYs earlier this year. His speech was, like Scott’s, incredibly moving. I don’t throw the term “inspirational” around lightly – it seems to be overused these days – but his eloquence and perspective on life was an inspiration to anyone who has been dealt a cruel hand.

His passing was especially difficult today because I was finding myself a bit down. Although my struggles with muscular dystrophy pale in comparison to what Sager had to endure, his example is a reminder to us all to cherish each day no matter what your circumstances may be. Nothing is guaranteed.

Well, almost nothing is guaranteed. I can guarantee that the NBA on TNT will never be same. Although I don’t watch the NBA as much as I used to, I still follow the sport, and tune in to the big games from time to time. Half the fun was tuning in to see what Craig Sager was wearing as he roamed the sidelines.

The best tribute to Sager has been, ironically, on Twitter. With a platform like Twitter, as you know, even the most noble, uplifting, genuine people seem to get knocked off their pedestal by hate-filled commenters. Not today. Not with Sager.

I scrolled through hundreds of tweets, and saw the love from all walks of life – fans, current and former NBA players, even Vice President Biden. Everyone memorialized him, grieved him, cherished him.

Perhaps his greatest accomplishment was when he got notorious curmudgeon Gregg Popovich to crack a smile, which is no small feat:

Sager leaves an indelible, colorful void. He was one-of-a-kind, a decent man in a world that needs more of them.

 

 

 

The Better Angels of Our Nature

Three weeks ago, at the dentist’s office, as the final bitewing x-ray was carefully being removed from my mouth, the dental assistant decided it was the perfect moment to ask a simple, light-hearted question to help pass the time:

“So, what do you think of the election?”

I recoiled and nearly swallowed the plastic x-ray. I let out a grunt of disapproval, which could roughly be translated as, “Don’t you know it’s 8:30 in the morning on a Monday, I’m caffeine-deprived, and you just forced me to suffer through 15 minutes of bitewings being placed at awkward, uncomfortable angles throughout my mouth?”

Whatever happened to “How was your weekend?” or “Your teeth look horrible – do you floss every day?” All perfectly valid, reasonable questions for useless small talk.

“So, what do you think of this election?” 

In case she didn’t get the memo, I supplemented the guttural noise with a piercing stare. I took a sip of water for dramatic effect.

She took the hint.

“Ahh, yeah, an aggressive question to ask at 8:30, huh?” she replied with a canned laugh.

Eventually, since I didn’t want to come off as a total jerk, I started mumbling half an answer about how it was a complex question. I almost blurted out an exasperated “Do you have all day?”, then thought better of it in case she closed the door behind me and said, “I do! I’m here ’til 6.” Thankfully, before my rambling had a chance to turn into coherent thought, the dentist arrived in the nick of time to begin the exam.

Don’t get me wrong, I am all for civic discourse, and I appreciate the assistant’s candor in cutting through the conversational fluff meant to put the patient at ease. But the last thing I needed at that moment was to be tilted back in the chair, blood rushing to my head, with the voices of the candidates echoing in my mind as I teetered on the brink of unconsciousness.

In case you can’t tell, yes, I am through with this election. I’m sure you are as well. Although I am typing this the day before Election Day, many of you will read this after. Either way, it has been a year to forget, and no matter who wins, millions of people will have a bitter taste in their mouth.

Thankfully, this is not a political post, so do not fear. I am writing this in the spirit of bipartisanship, as no matter who you are or where you live, we are all in need of a hug.

My time at the dentist’s office highlights two important points. First off, if you want to ask someone a political question, make sure they are in no danger of choking to death. They may find it a preferable outcome. Second – and the actual reason I am writing this post – is that you can’t really talk about politics in a 15-30 second window, unless of course you are looking for “It’s a train wreck!” as your preferred answer, so that the remaining time can be spent in forced, resigned laughter. Considering the awfulness of being at the dentist, perhaps that was the response the assistant was hoping for.

I offer this light-hearted moment as proof that even with the most depressing of topics, there can be humor. But overall, I have to be honest: this election has left me hurting. We are all hurting.

But all is not lost. Will you go with me for a walk?


To watch the discourse taking place on TV, to read the Facebook posts and subsequent comments about anything and everything related to politics, it sure seems like we are seeking out the worst in others. We gravitate towards disagreements without first finding common ground, or even conceiving that there could be common ground. People have resorted to shouting over one another, as if the volume of one’s voice has any bearing on persuasion. I am dismayed by the lack of civility. This past year, especially, has been like watching a fabric tear get worse.

There is no question there is division in this country. We are a nation of conflicting ideals. This narrative is reinforced anytime we watch the news, read articles or encounter someone who brings up certain controversial topics. The term “echo chamber” has become a part of our national lexicon, and news stories with varying degrees of truth are shared until they seemingly become truth.

In this age of social media, everything gets misconstrued and misinterpreted. Offhand comments turn into partisan mud slingling. Even your innocent Instagram post about your new puppy somehow turns into a referendum on the direction of this country. We’ve all felt the anger boil up inside us when we see or hear something we disagree strongly with. No one is immune to it. Welcome to 2016.

We see everyone that we encounter in our day-to-day lives through the lens of us vs. them. And for anyone labeled as them, they cannot be trusted. Our society is a windshield, damaged by the impact of a projectile, cracking in all directions, struggling to maintain its structural integrity.

I’ve had many sleepless nights thinking about this decline in civility. For heavy conversations like politics, it’s pretty clear that the conversation is doomed from the outset unless you really understand and know the person you are talking to. When you are arguing with someone named Pat in the comments section of an article you just read, the chances of respectful dialogue are next to zero. If you read an article that openly mocks and denigrates your views and beliefs, finding common ground is impossible.

After all, aren’t your conversations with your best friends about heavy issues or the meaning of life far different than when you engage with some random person you don’t know on social media? Of course they are. There is a level of trust with the people you know, because they understand you, and you understand them. You know where they are coming from, and if you disagree with something, you know why. Even if you engage in passionate debate that borders on argument, you always have the foundation of love and respect for that person to fall back on.

Once you have seen the best in someone, you form a trust with them that can withstand any disagreement. The problem is, our first interaction with a stranger and their differing viewpoints often brings out the worst in ourselves and in them. I am just as guilty of this as anyone else. I am not perfect, nor do I pretend to be observing all this from my high horse. I have gotten into arguments, and sometimes find myself ready to burst at the seams.

At the same time, I have seen what seeking out the best in others has done to change my life. Through my experience as a rare disease patient, I have had the wonderful opportunity to befriend people from all walks of life, from every corner of the country, every ethnicity, socioeconomic class, and political leaning.

Disease is the great equalizer of life. When you can understand someone’s disease-related fears, their hopes and dreams (some of which have been destroyed by their illness), you are able to form a more complete picture of who they are. By listening to what flows from their heart, it changes a person. It certainly has changed me. I cherish these conversations, these connections that form when two people share their vulnerabilities, and really listen to what the other has to say. If there’s one benefit to having a life-altering disease, it is that it has forced me to be a more empathetic individual.

I have become wired to find the best in others, not because I have some noble trait that others lack, but because it is the very key to what has allowed me to survive a life-altering condition. Without others, I am nothing.

This understanding did not come easily.


Six years ago, them meant everyone in my life. I was 24, living in Boston, wholly unable to come to grips with my muscle disease, dysferlinopathy, that started manifesting two years prior. In the blink of an eye I had lost the ability to run. I struggled to go up a flight of stairs. I would wake up in excruciating back pain, my muscles atrophying and contorting with reckless abandon.

Worse, I began to fall in public, my knees buckling and giving out without any notice.

I was at a crossroads in my life – ability and disability fighting for control of my future. I knew disability would ultimately win, and it has, but at the time I was a battleground of depression and, above all, fear.

I vainly did everything I could to hide my symptoms from my friends and coworkers. I could still walk somewhat normal, although I wore long pants every day because I wanted to hide the fact that I had begun wearing leg braces. I felt like Forrest Gump, only the rock pelting my face was from life, not a bully on a bicycle.

I fought my fate, viciously, for as long as I could. In doing so, I alienated myself at work, lashed out at my friends, and began talking in code to my parents, unwilling to express how I was truly feeling. Above all, I was so jealous of those around me – able-bodied, living life without a care in the world. As a defense mechanism I sought out every flaw I could find in others, in an attempt to tear them down to my level, as I was incapable of building myself up proactively.

After a traumatic fall, my decision became clear. I knew I would have to tell everyone in my life what was going on with my body. I wasn’t stupid. I could hear the whispers in the hallway when I fell in the office, and I knew my roommates could see me laboring against the railing going up to our apartment, exhausted from carrying bags of laundry. I hated being an oddity but hated even more keeping this battle to myself any longer. I had isolated myself from those around me for too long, a disabled traveler in a foreign, able-bodied city that I no longer loved.

I shared my diagnosis in a blog post, as writing was my outlet of choice when times got tough. One post became several, first for the Muscular Dystrophy Association, then on this website, where I opened up about my journey and what it was like to walk a mile in my bulky leg braces. I confirmed what everyone had suspected, but had been too afraid to ask. I indeed had a disease that was making we weaker.

My initial reason for writing was to help myself – I wanted to lift this perverse burden off my shoulders. I figured people would finally know my condition, and that would be that. No more whispers or perplexed stares.

What I did not expect, however, was the impact sharing my story would have on others. As I didn’t think my story was that inspirational, I never considered the possibility. Coworkers who read my blog began telling me in private about childhood surgeries that had left them insecure, or neurological conditions they were reluctant to tell others about. Soon I became a sounding board for friends confessing anxieties, such as career stagnation and relationship trouble.

It wasn’t just people I knew reaching out to me. Strangers who came across my MDA blog, and even this blog, would email me out of the blue, explaining their situation, some of whom were struggling to accept their own muscle disease; others, down on life in general.

At first, I was puzzled. Again, I didn’t think my story was more inspirational than anyone else going through adversity. I had read plenty of stories of others who had dealt with far worse. Eventually, I would realize what was making an impact was my willingness to be vulnerable. I laid it all out there, the good and the bad, and as a result people felt comfortable sharing their long-suppressed emotions, because they knew I could understand the complexity of what they were going through. My disease had put me through the ringer. By laying bare my fears and my frustrations, I had implicitly given them permission to do the same. They connected with me in a way that they were unable to with others.

The angry, petty, version of myself melted away the more I encountered the vulnerabilities of others. I began to see everyone I talked to in a new light, especially my family and friends who I had unwittingly taken on my emotional roller coaster the last few years.

Those perfect lives everyone else was living? They were not perfect. In fact, for many friends it was all just a façade. Inside, they were hurting.

Once I became a steward – an unintended observer if you will – of the fears and insecurities of others, there was no going back. In the last two years I have attended business school and have started sharing my story with audiences throughout New England. I have had several new people enter my life, from acquaintances to best friends. No matter who I meet, I try to look for what grounds them, what makes them human, rather than feeding my prejudices. It’s hard to get past prejudice, but I try my best. When I meet someone, I want to not only shake their hand, but also connect with them. To truly feel understood by someone is a feeling I cannot describe.


I am more than my disability, and you are more than whatever boxes you check on a form. I’ve found that to truly understand a person, you have to dig deep, understand their hopes and dreams, their fears and insecurities. Are they struggling? Are they in pain? Are they worried about a health challenge or job security or a relationship? Are they passionate about something yet feeling hopeless about their current situation? The answer to one of those questions, almost always, is yes.

We are conditioned to make judgments about someone based on Facebook posts and offhand tweets. We increasingly identify someone’s character, their very integrity, by their political affiliation, what they look like, where they live. Our opinions about someone are being made based on snap-judgments, on incomplete information, because that’s all we have time for. I’ve done it, and it’s hard to break free from this cycle once it becomes ingrained.

But a consequence of our ability to connect with others online has been our disconnect in person. We think that who someone is online is their true self, their full self. Social media has a way of distorting reality. I’ve seen Facebook posts pit retirees against high schoolers. friend against friend, cousin against cousin. It’s horrifying and sad.

It’s as if our lives have become this warped experiment where I show you a picture of someone and some basic demographic information and you are forced to come to snap judgments about their life, their temperament and their character. Chances are our prejudices will not align with reality. Is Pat from the comments section an internet troll or a heartbroken soul just having a bad day?

What we’re missing is the trust component, and we can’t have trust unless we first connect on a deep level with someone. Increasingly, our connections are happening online, far removed from our true personas. Online connections, by their very nature, are overwhelmingly superficial.

It is going to take effort to build this trust back, and find the good in others. But it is possible to break free from our collective incivility. The pillars of our society were built on decency, and we can regain it. Partisanship and distrust do not have to be the norm if we refuse to let it be the norm.

So how do we rebuild civility and trust? We are not going to magically unify in a day, or even a year. But you can start with people you already know, the people you communicate with on a daily basis, or even complete strangers. For every friend who is struggling that you lend a shoulder to, for every impulse you resist to engage in an argument, for every stranger you help up who falls for seemingly no apparent reason, you change this divisive narrative. It adds up. It matters. Even if no one gives you the proper respect back, just the fact that you yourself have decided to contribute to the solution is a start.


The moment I regained my civility happened on a cold January night a few years back. I was walking in the middle of Mass. Ave in Cambridge, back to my apartment. I was paying attention to my steps, but did not notice the uneven surface of the road, stumbled, and fell to the ground. I was embarrassed, frustrated, and above all, scared. This was past the point where I could pick myself up on my own, so I was in dire need of assistance.

Suddenly, two nameless strangers rushed to help me up, and before the light turned green and I was flattened by oncoming traffic, they were gone, disappearing into the night. I tried to find them to say thanks, to no avail.

I realized when I got home that I could no longer be mad at the world; I had seen the best of humanity. This was the traumatic fall that I referenced earlier. This was the final knockdown I needed by life to tell me to shape up.

Since that day, I have forced myself to find the best in others, to outwardly seek goodness rather than be a passive recipient to random acts of kindness. With a more positive mindset I was able to properly open up to the world through my writing, and soon after, my speaking. Doing so has enabled me to meet countless people who have enriched my life. I realized the world was out to get me only if I gave it the permission to do so.

I share this because if this transformation can happen to me, I know it can happen to you as well. What you will find is that everyone around you – friends, family members, especially complete strangers – are desperate for someone to connect with. Desperate to have genuine, heart-to-heart conversations. Everyone is struggling with something. Even the people who spout off on the internet about the latest political scandal is, at their core, someone hurting or full of fear.

If we can rebuild these connections in our own lives, and opt to seek out the best in strangers by first trying to understand them before casting judgment (it can be hard, I know), we can change the narrative. We can, relationship by relationship, rebuild our collective decency. Even if we read something that we strongly disagree with, just the act of taking a step back and going “I wonder who this person really is, and where they are coming from that led them to this point?” can be a start. We are not a society beyond repair, we are a society in need of repair. The divisions that exist are indeed real, but the distance between us is entirely in our control.

I close with a quote from Abraham Lincoln’s inaugural address in 1861. Faced with the crisis of secession and the impending Civil War, his words are as true today as they were then:

“We are not enemies, but friends. We must not be enemies. Though passion may have strained it must not break our bonds of affection. The mystic chords of memory, stretching from every battlefield and patriot grave to every living heart and hearthstone all over this broad land, will yet swell the chorus of the Union, when again touched, as surely they will be, by the better angels of our nature.”

It will take time to heal, but it is worth it for us and for the generations to come. The irony of writing about the state of social media in a blog post to be shared on social media is not lost on me. So, to prove my sincerity, if you yourself need someone to talk to, vent to, or confide in, please feel free to reach out to me. I am not a bot nor an internet troll. I am just someone who believes that within all of us lies the better angels of nature, longing for connection.

Unless of course, I am at the dentist, in which case, please wait in the lobby.

Singin’ in the Rain

This is the second letter in a two-part series looking back on life in my 20s. Today’s post is a response letter written from my current, 30-year-old self to my 23-year-old self. The first letter in the series can be found hereTo learn more about the series as a whole, click here


Dear Chris,

Greetings from the future! 2016 is an interesting time to be alive, to say the least. Apple is about to release the iPhone 7. Pluto is no longer a planet. NFL games are now being broadcast on Twitter. Brangelina is no more. I won’t even get into what is going on in the presidential race – you wouldn’t believe me even if I told you.

Before I go any further, I have to admit, I have no idea how to address you – you are me, I am you, right? Either way, I am treating you as a separate person for the purpose of this letter. As your older self, I am basically your older brother anyways.

Technicalities and jokes aside, you brought up some very serious concerns at the end of your letter that I want to discuss. You asked a lot of questions – deep, existential questions – yet you seemed hesitant as to whether or not you wanted to hear the answers to them. I initially considered going into great detail and telling you exactly what will happen, but I have decided not to do that. Frankly, there are some things that are better left unsaid, some experiences I don’t want you to have to come to grips with at this moment. It would be counterproductive, and it would get you too concerned about specific details that would detract from the overall message I want to convey.

The next seven years for you are going to be full of situations and events that, if I describe them now, are going to sound terrifying, but are easier to comprehend in the proper context. The best context is to experience these moments as they happen. There is no substitute for living through your circumstances. It would be unjust to try and condense them into the framework of this letter.

There is going to be rain ahead – there is no avoiding it. Parts of this letter will scare you, even if I don’t go into specific, day-by-day details. But let me reassure you when I say, for everything that will happen, you will have the support you need to get through it. Trust yourself, lean on your family and friends, and you will make it through the rain.

I know you were most anxious to know my current status, so I will save you some anxiety and let you know that yes, I can indeed still walk, although with great difficulty. The neurologist’s prognosis, I have to say, was spot on. You are going to experience increasing muscle weakness over the next seven years, leading up to the condition I am in today – still walking, but quite weak. To picture it, I walk around and have the balance of someone who has been up all night drinking. I’m sure you have NO idea what that’s like….look it up it if you have to.

The path ahead is going to be as bumpy as you imagine, and then some. This disease is going to test what you are made of each and every day – physically, emotionally, mentally and spiritually. You are going to have to live through this process.

But each experience, every bit of adversity that you will face, will help to forge your character. My identity today is a testament to all that I have learned because of this disease. It will turn you into a more caring, empathetic individual. Your relationships will be deeper, and as you share your vulnerabilities with others, they will return the favor. Every person you meet is coming into your life for a reason. Trust me on that – I have the benefit of hindsight. You will have many more friends than you have now, people who sincerely care about your well-being. Cherish these relationships – they are everything.

I know you are probably still worried, no matter my reassurances. Worry has always been a big part of the equation. It will never go away – in fact, I still worry to this day. The key, however, is to control worry to the best of your ability. It’s a voice within that you can either choose to hear or ignore. Besides, no one ever quite vanquishes fear.

Mark Twain summed it up best: “Courage is resistance to fear, mastery of fear, not absence of fear.”

Setbacks will happen, including falling, but you must pick yourself up, wipe the dirt off your shoulders, and move forward. How is this possible? Although I will not divulge specific events, I will give you some advice that will allow you to persevere. I will tell you what I’ve learned, so that you are more prepared when the time comes.

Consider this letter not everything you want, but rather, everything you’ll need.

At the end of the day, it all comes down to you. There are some things that you will not be able to change – this disease for example. There are some things that you will want to change, like trying to find a cure as quickly as possible – that ultimately is also out of your control. These external forces will weigh on you and beat you down, but the only way you will truly rise above your challenges is to separate what you can control from what you can’t, then work like hell to make the best life for yourself based on what you are able to change.

You alone can control the inner discourse in your mind. You have the power to be positive, just as you have the power to be negative. The next seven years will be a continual battle between the two, but being positive is a possible outcome. I would argue it is a necessary outcome. You can create for yourself misery or happiness, no matter your circumstances.

It will take practice. To this day, I still struggle to be positive, and even on my best days, I’m not Mr. Optimist. In fact, you will soon learn about, and be compared to, Grumpy Cat. That is correct – your future coworkers will compare you to a real-life cat with a permanent frown. But as long as you strive for optimism as an ideal, that is the greatest step you can take.

grumpy_cat_06-freelargeimages-com
Your spirit animal.

That is not to diminish the difficulty of the time ahead. The symptoms, as you are experiencing, are starting to manifest, and you soon will lose abilities you once took for granted. Emotionally, it will be difficult to grasp and comprehend. You will get discouraged, but I say let it happen. Grieve for the able body you used to have. During this time, focus on staying afloat, moving forward in your life where you can. Enjoy life to the best of your abilities. Absorb the traumatic experiences, because someday they are going to be the key to your success. But grieve, then let it go. You can cry all you want, but once you are done crying, the situation remains unchanged. The disease is still present. If you don’t resolve to move on, you’ll be stuck in sadness forever.

Part of the sadness will be due to the fact that your body will soon need assistive devices. This is a hard reality to accept, but it is vital that you don’t deprive yourself of anything that can improve your mobility. When you identify the need, embrace assistive technology sooner rather than later.

The fear of losing the ability to walk will consume you. The stigma associated with using crutches, a scooter or a wheelchair isn’t easily overcome. But you must understand that the positives far outweigh the negatives. For example, I just started using a scooter within the past couple of years. At first I was hesitant, but once I realized that I could venture down the street without worrying about falling, and that I could take random turns down side streets without regard for distance, it was liberating. Besides, assistive technology has improved significantly in the last seven years. There are robotic exoskeletons that allow the paralyzed to take steps. Even wheelchairs have improved – they now have models that allow a person to stand and have conversations with people at eye level.

I know at your current stage, thinking about assistive technology is frightening. After all, what will people think of you? The truth is, no one really cares! I mean, sure, some people will stare, but not as many as you think. People nowadays are so absorbed in their smartphones, and those not on their phones are so afraid to make eye contact with strangers that they stare at the ground. We have become an introverted generation. As for the people who do stare, or who make an off-hand comment about you or underestimate you based on your disability, they are not worth your mental energy.

You must not let every little perceived slight bother you. Some people will talk about how the world is ableist, and they will indict society for being unwelcome to the disabled. And yeah, ableism does exist, but if you get offended by everything you experience (a stair to enter a building, or a low toilet), and if you internalize each slight, it will eat you up on the inside and give you unnecessary stress. There is always a time to speak up, but I believe that if you can choose between partnering with others to find solutions or blaming them, seek solutions. I have found that many people are not intentionally ignorant, and once they have been educated, are more than willing to make accommodations and help you out.

Your story, once you have lived through the difficult times, will be tremendously powerful to others. That is part of the reason I want you to live through these experiences without forewarning. This painful wisdom will one day be the source of great strength. You don’t yet know this, but you are a natural storyteller. It may seem difficult to grasp now, but there will come a time when you will get on stage in front of 500 people without any fear. And to think, more people are afraid of public speaking than of dying! You will become masterful at sharing your patient experience. It will educate people about disability and help to inspire others to overcome adversity in their own lives. It will enable you to connect with people on a deeper level, a level that people rarely experience in their day-to-day interactions. Your faith in humanity will be restored.

Everything positive that will happen for you will come as a result of sharing your vulnerabilities. Your story will help others, and it will help you as well. Doors will open for you that never would have opened without this disease. These exciting opportunities will make what you are going through much easier to deal with. It will give you a purpose you’ve never had before, and a motivation to maximize your impact on the world. If you didn’t have this disability, would you have the same level of empathy and appreciation for others? Honestly, I don’t think so.

However, you can’t get to where I am at today without going through the dark times. Although a difficult period of your life is ahead, it will serve a noble purpose. It is the training, the wisdom you need to gain, to fulfill your mission in life.

There were times – times that you will soon experience – where I wanted to blame God for everything that has happened to me and turn away. Look, you have every right to be upset, but trust me when I say that it all makes sense now. The hurt you will feel, the fear of the future, the anger – they are a natural part of the grieving process. There will be many moments that will seem unbearable when they happen, but only later on will you truly know why they occurred. It may take a few years to fully understand, but you’ll figure it out eventually. God knows what he’s doing, so you just have to trust the journey.

In fact, the day you wrote your letter is a perfect case in point. That three mile walk you went on after coming home from the doctors? It is no coincidence that your path took you back to Boston College, the scene of your first major rejection. In a couple years you will begin thinking about getting an MBA. Let’s just say they will not be sending you a second rejection letter.

As I said before, doors will open for you, and they will make this life worth it. I have achieved many goals, although I haven’t achieved all of them yet. I am still looking for a significant other, and given that I am at peace with a lot of what has gone on in my life now, I like my chances! Other unfulfilled goals include winning a Pulitzer Prize and an Academy Award. You might think I’m crazy, but I say shoot for the moon. Even in a weakened state, it is important to take risks, and not be afraid to fail.

In closing, although I’ve covered a lot here, it is impossible to explain everything that will go on in the next seven years. You will deal with emotions and experiences that will seem overwhelming at the time. Countless band-aids will be opened to stop the bleeding, numerous painkillers taken to soothe the pain. Tears will be shed. But, no matter how many times you fall, no matter how dark the clouds are overhead, don’t give up.

The rain is unavoidable; you might as well splash around and enjoy it.

All the best,

Chris Anselmo

September 28, 2016

singin-in-the-rain-di
Metaphorically sing, but please, for the sake of others, do not actually sing.

 

P.S. – I have spent a significant amount of time trying to see if I can share with you winning Powerball numbers, but I have to find a way to ensure I don’t create a ripple effect that will have disastrous consequences. Last thing I need is to become a millionaire, buy a spacecraft I don’t need and crash into an asteroid. Let me get back to you on this one.

The Gathering Storm: A Letter from my Younger Self

This is the first letter in a two-part series looking back on life in my 20s. Today’s post is a hypothetical letter written from my 23-year old self to my present-day self. In November 2009, at age 23, I went to a doctor’s appointment that would change the course of my life. This letter captures my thoughts and emotions right after I left.

To learn more about this series, click here


Dear Chris,

I’m desperate. I need answers, and I need them now.

I’m sitting here on a bench in the sky lobby at Beth Israel Hospital. I just came out of my first neurology appointment, and it was traumatizing.

Words are hard to come by at the moment. I’m dazed. My body feels heavy, almost detached. I’ve been staring right into the sun reflecting through the window and I don’t even care.

So many thoughts are running through my head, so many emotions. Above all, I’m afraid. My future has been turned on its head, and I don’t know which side is up.

The doctor confirmed that I do indeed have dysferlinopathy, which matches the diagnosis I was given in high school. That part isn’t shocking – that’s why I scheduled the appointment. Unfortunately, I learned for the first time today what that diagnosis actually means for my future.

It turns out, the weakness I felt in my legs while running wasn’t because I was out of shape, it’s because I’m getting weaker. Now. At age 23.

I had a sense it was related to my disease. I haven’t felt right for a while, and I’ve noticed that I don’t gain strength at the gym anymore. I just went for a run the other day and could only run for a few minutes before fatiguing.

I don’t know what I expected the doctor to say, but I guess I felt that deep down it was a condition I could manage somehow, or that if I rested and did low-impact exercise, the strength would come back. I thought maybe I was stressed out or overdoing it, even though I am as active as the average person. It never occurred to me the strength, once it left, was gone forever. I never expected that I would weaken this quickly.

I told him that I thought it was something that would happen to me later in life, at a slower rate, and that it would be a minor nuisance more than anything. He shook his head and told me the symptoms are already manifesting. Already manifesting? How is this possible?

I’m sure you remember this day well – I know I’m not telling you anything you don’t already know. But please bear with me. I just don’t have the benefit of hindsight like you do – I’m living it for the first time right now. It sure feels like this is a turning point in life. Is it? Is there no going back to the way things were after today?

He said I might not be able to walk by the time I’m 30, that many people are not ambulatory by that age. He tried to reassure me that since there are so few patients, the variability in the disease progression is great, so nothing is set in stone. But what’s the difference if it doesn’t happen by 30? It’s going to happen, probably within the next ten years.

Well, future Chris, am I still walking at 30?

I’ll be honest, I don’t see how I can go back to living life the same way with this knowledge. I feel like the storm clouds are gathering in the distance, and life is going to become increasingly difficult. I can feel the anxiety build within me. I probably am overreacting, but I’m not thinking rationally at the moment. I’m tired, I’m stressed, and this is a lot to process mentally.

Speaking of being rational, how the hell could I have been so naïve? I’m someone who always tries to be objective and collect the facts. How could I have gone through college without bothering to research what this disease will do to me? I should have known. I feel irresponsible, like I let myself down, wholly unprepared for what I would hear today.

If I knew, I would have studied abroad. I would have traveled. I would have gone on Spring Break. I would have prioritized my life differently. I would have done so many things had I not been so blissfully unaware and ignorant. I’m an idiot.

On the other hand, thank God I was blissfully ignorant. For four years I didn’t have a care in the world about this disease. What if I had been aware of what was to come? Would I have had the same experience? I say that I would have traveled and done all these fun things, but is that true? Maybe I would have been too depressed to go outside.

The truth is, I’ll never know. The facts are the facts, and I’ll debate the pros and cons of knowing earlier another time. Right now, I’m just so overwhelmingly….devastated. I know it’s not a death sentence, thank God, but life is not going to be the same. The more I think it through the more I grasp the enormity of it all.

There was one moment today that was especially difficult. Towards the end of the appointment, as I sat there on the table processing the doctor’s words, I found myself stalling, trying to avoid asking the one question I knew I had to ask, but already knew the answer to. Eventually I mustered up the courage.

Are there any treatments?

He leaned back in the chair before answering, which I knew was a bad sign. He admitted it was going to get worse, that I could eventually end up in a wheelchair, but unfortunately, there’s nothing they can do to stop it. He cited some trial in Germany or something, but he said it was ineffective. Instead, he stressed the importance of controlling the disease, to slow the progression. Eat well, get plenty of rest, don’t exercise too hard, don’t drink too much, that sort of thing.

He probably said more after that, but I had spaced out by that point. He ended by recommending that I go see a physical therapist in order to maintain my strength, but seriously, what’s the point? No matter what I do, it’s going to get worse. Even if I delay the symptoms, they are eventually going to manifest.

As I sit on this bench, I can’t help but wonder what life will be like at 30. I need that answer. I need to know what to expect in the next few years. I am done with the blissful ignorance. I have so many questions, questions that I am afraid to ask but I have no choice. I’m trying to suppress my thoughts, but my subconscious is tormenting me.

Please, be honest. Will I be able to overcome this?

Will I be able to plan for my future?

Will I be able to buy a house?

Will I find a girlfriend who will accept me despite my disability?

Will I look at myself differently, or be treated differently by society?

Am I going to fall and break something?

Will I be depressed?

Will I still be walking?

And I hate to ask this, but it’s really eating me up inside – is this life worth it? Will I be happy?

On second thought, I don’t know if I can handle the answers to these questions. I’m clearly scatterbrained right now, but I’m so scared. So much in my life is going to change if I’m getting weaker. There is so much I haven’t done, so many things I’ve taken for granted that I know I’m going to lose the ability to do. I am already low on self-esteem and confidence to begin with. To not be able to walk, or lift my arms to feed myself – this seems like it is going to be too much to bear.

Oh what am I saying, I need to know! Please, don’t hold anything back. Tell me what is going to happen so I can prepare to the best of my ability. So I can enjoy the mobility I have now before it’s taken from me. I need a map, a compass, anything to get me through this storm that’s coming.

Above all, I need hope.

Sincerely,

Chris, age 23

November 20, 2009