Boston

As I write this, I am back home in comfortable, quiet Connecticut. But my mind is elsewhere.

Recently, I had the opportunity to spend two weeks in Boston, my adopted home for 12 of my 32 years. To say that I was excited to visit the city for an extended period of time is an understatement. I was thrilled.

My years in Boston, from 2004-2016, were the most eventful years of my life. They formed me into who I am today.

Boston was where I went to college, worked for six years, and got my MBA.

It was where I first noticed symptoms of the muscle disease that would take over my life.

It was where I made lifelong friends and lost a dear friend.

It was where I fell many, many times.

It was where I questioned my very existence and the point of this frustrating, maddening hand I was dealt.

Most important, it was where I learned to pick up the pieces of my life and start over again.

Boston is where I grew up.

Continue reading “Boston”

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.

A Lifetime in a Decade

Next week is the big 3-0. To be honest, it feels like just another birthday. Don’t get me wrong, I am blessed for every day I am given, but the number itself doesn’t make me feel any older than I already feel. At this very moment, for example, I am writing with a pulled muscle in my neck from the physically demanding action of rolling over in bed. If anything, 30 gives me a chance to take a step back and assess all that has happened in the last ten years.

My 20s, to say the least, have been difficult. Lately, I have found myself in a reflective state, thinking about what I have been through over the last decade. After all, my entire disease progression took place in my 20s. It was shortly after I turned 21 when I first noticed muscle weakness. It feels like a lifetime ago that my body was in shape and fully able.

So long ago, in fact, that I am rapidly forgetting what it feels like to run, jump, or walk without fear of falling. That is why I cherish dreams where I am running and active; although it’s cruel when I wake up, they are momentary escapes from my current, limited reality. I do, however, vividly remember the feeling when I first realized the magnitude of what I was up against.

The first scarring moment on my journey was not when I pulled up lame while going for a run, or when I was frustrated that I was not gaining strength at the gym. It was actually a year later, in November 2009, when I had a fateful appointment with a neurologist at Beth Israel hospital in Boston. That day, I gained insight into what my diagnosis really meant, and what was in store for me going forward. The naïve belief that I was missing an insignificant protein that would have little impact on my quality of life was debunked for good. The neurologist was a nice guy, but the information he provided – specifically the prognosis and lack of research being done – was a harsh jolt of reality. I left the hospital that day perplexed, and above all, afraid.

I think about how I felt then, and where I am now emotionally. The cloud that formed over my head that day has not left. Some days it rains, other days it thins out so light can shine through. But it’s always there, and, to be realistic, always will be. I’ve experienced so much since that day, the disease uncompromising in its steady progression despite my vain interventions.

What is undeniable about this turbulent period is that it has provided me insight and wisdom I otherwise would not have gained. Adversity has forced me to ask deep questions about the meaning and purpose of my struggle, and of life as a whole. It is a life that has not been easy, and will only get more difficult with each passing day.

But I’ve grown, there is no question. I am far more prepared today to deal with the hardships to come than ever before. And they will come.

I think back often to that day at Beth Israel. I figured, based on what the doctor was saying, that I had five years left to walk, at best. He said many patients are no longer ambulatory by age 30.

I had so many questions, so many fears. All I could think about was what my life would be like when I got to 30. Would I be walking? Would I be happy? Would life still be worth living?

To commemorate turning 30, and since I don’t want to do a cheesy “20 things I learned in my 20s” type list, I am going to instead write two posts in the coming week. First, I will compile my thoughts and fears on that November day in 2009 and write a hypothetical letter to my 30-year old self, asking how life turned out. Then, next Friday, I will write my answer.

 

 

Lesson Learned #1: Don’t Go At It Alone

There are certain moments that still stand out, painful as they are to recollect.

In the early days of my disease, when my symptoms first started to manifest, I didn’t know how to respond to what was happening to my body. Initially, I shrugged it off. I figured my leg cramps and sore back were the result of being out of shape. When the symptoms persisted, and I noticed my muscles were becoming weaker, I started to worry. I pulled out my medical records from four years prior and read over my diagnosis – dysferlinopathy – searching for clues on what was happening to me. I read the neurologist’s notes on the expected progression of the disease, and suddenly the lightbulb turned on: my strength wasn’t coming back.

No one who experiences a life-altering condition such as progressive muscle weakness is expected to handle the emotional burden perfectly. I don’t know of anyone, in all the hundreds of stories I’ve read, who gracefully accepted their diagnosis from day one. It is a grieving process to realize that your life is going to be turned upside down by the limitations of your body. Everyone wants to live a normal, healthy, active life. To have that taken away is not something that is easily accepted. Some people never do.

My own path to acceptance was difficult. Looking back, I’m disappointed in how long it took to come to grips with the magnitude of my diagnosis, although on the positive side this journey enabled me to become the person I am today. But it was still painful, full of many situations I’d do over again if given the chance.

My biggest regret, above all, is how I handled my relationships with other people during this time. Whereas now, in my weakened state, I understand just how important it is to have a support system of friends and family in place, back then I had no clue. 2008-2012 was my denial period, “The Dark Ages” of my life.

I remember the feelings, the vain moments where I tried to hide my weakness from the rest of the world. Whether it was hauling my laundry up the stairs long after I should have asked a roommate to help, or wearing jeans in hot weather to avoid people seeing my thin calves, I didn’t want others to know what was going on.

But holding in toxic emotions – fear, depression, denial, you name it – was destroying me on the inside. I stopped sleeping well. I developed heartburn. I was in a constant state of worry and stress.

My body continued to weaken during this time, culminating in my first fall in 2010. I was walking with my roommate when it happened. As soon as I pushed myself back onto my feet, I realized the gravity of my condition and what it was doing to my body. When he asked what happened, I realized I couldn’t hide it anymore.

My parents always knew my diagnosis, but like me, they thought it wouldn’t manifest until much later in life. We had shrugged it off at the time as a “missing protein”, and nothing more. When the weakness began to accelerate, however, I didn’t let on to them just how severe it was getting. It wasn’t until Thanksgiving one year where I tearfully confessed to my mother and sister on separate occasions how much it was weighing me down. This disease was much more than a missing protein.

I resisted telling my roommates for as long as possible, even my roommate who was with me the day I fell. I could tell they were perplexed when I didn’t run to catch a bus, or when I started using the railing to go up the flight of stairs to our apartment. Eventually, begrudgingly, I told them over email (we had a roommate email thread), although even then I don’t think they quite understood what it meant. At that point, I barely understood myself; my long-term prognosis was still unclear.

If I resisted telling my friends, I certainly didn’t open up about it to my coworkers. I told my boss, but that was it. Every time I was on the verge of telling others, I stopped myself. The situation didn’t feel right. I was uncomfortable with what I should or should not disclose about my condition in a professional setting.

Even after disclosing my condition to those closest to me, it provided little emotional relief. I was still ashamed, still embarrassed to ask for help. Although my friends and family now knew what I had, they did not understand what it meant. They did not know how much it hurt me inside to live through this transition, mainly because I refused to tell them.

I thought I could handle it all myself, that it was my burden to carry, my fight alone. I did not want others to think of me any less, or see me as disabled. At the time, being disabled carried a major stigma.

A consequence of this emotional struggle was that I began to shut myself off from others. I stopped going out with my roommates, for fear of falling. I stopped enjoying myself and being spontaneous, for fear that I’d trip over a sidewalk or be put in a situation where I’d have to do some sort of physical activity where I would show that I didn’t have any strength.

In October 2011 I knew I had to move out of my apartment. I couldn’t go up the stoop and flight of stairs to my room any longer without significant difficulty. In retrospect, had I been more open about my condition and let my friends in on the emotional struggle I was fighting, it would not have come as much of a shock to them that I was leaving. They certainly would have prevented me from re-signing the lease when it came up for renewal in September. It is safe to say I mismanaged the situation, mismanaged our friendship, and allowed for the opinions (or perceived opinions) of others to create this great miscommunication. Although I was able to break the lease once I found a replacement tenant, it was a rocky time. Many arguments ensued, and I was miserable at how it all transpired. By not being open and honest about what I was going through, I created a difficult situation for everyone involved, further exacerbating the emotions I felt inside.

The apartment fiasco affected my work performance. My boss saw that I was struggling and pulled me aside one day to ask what was wrong. Eventually, she escalated it to her boss, who told me in no uncertain terms that I needed to get help. It was tough to hear, but I knew he was right. I started to see a behavioral health therapist, who, although I only went a few times, showed me the value of unburdening myself by talking to someone. I realized that by keeping all my emotions in, not asking for help, and viewing myself as a lesser person due to my disability, I was doing myself a great injustice.

It wasn’t until I started writing a few months later that I began to open up. I found writing to be the easiest outlet to share my emotions, as it was still a difficult subject to discuss in person. Once everyone finally knew – friends, family, coworkers – a weight was lifted. Through my writing, I was able to not only disclose my disease, but convey to everyone how it felt. From there, life snowballed in a positive direction.

I recount this rather unflattering time in my life for a simple reason: I don’t want anyone to wait as long as I did to open up to those around you. Use me as an example of what not to do, and how not to deal with the initial stages of adversity. I don’t fault myself for waiting so long, as again, there is no flat, linear path to acceptance. You can’t shortchange the grieving process. But there were definitely times where I wanted to open up, and just about opened my mouth to confess what was going on, but held back. If I had asked for help a year into my experience rather than four years in, I could have saved myself a lot of grief and aggravation. Although none of it can be undone, I learned a lot of life lessons during this time which benefit me today.

If you are struggling with something, anything, whether physical or emotional, and if internalizing it is affecting you negatively, my biggest piece of advice is to tell others. Do it when you are ready of course, but resolve to talk to someone. Rip off the proverbial band-aid. Even if you start with your closest friend or family member, it will be worth it. Do not be afraid to show vulnerability. Sharing your vulnerability with someone not only helps the other person to understand on a deep level what you are feeling, it also builds up a level of trust with that person that pays lifetime dividends. In fact, there are times where I’ve shared my situation and others have felt comfortable enough to share their own difficulties with me, stories they have not shared with anyone else. If people see you are letting your guard down, you give them permission to do the same.

What I should have realized, but didn’t until much later, is that the people who truly matter in your life aren’t going to judge you, and more importantly, they want to know, because they want to help. Everyone I told was willing to pitch in once they understood the magnitude of what I was going through. My roommates in my final days at the apartment started helping me with my laundry and driving me places instead of walking. They started proactively asking if they could help, which never would have happened if I continued to internalize my burden.

And if someone reacts negatively to the news, what does that say about the other person?

You don’t have to be dealing with a life-altering illness to have a valid reason to share your vulnerabilities with someone you trust. Life is difficult enough. To fight your struggles alone is not only unproductive, it goes against what makes us human. Humans need other humans in order to live a happy, fulfilled life. You don’t have to tell the world that you are depressed or are second-guessing your career; telling a friend is powerful enough. And if you don’t have friends or someone you can trust, there are communities on the internet or nonprofit organizations for every conceivable disease and worry. You can share your burden anonymously, without disclosing personal information. Even seeing a therapist can be tremendously freeing, especially considering that the stigma of going is unfounded and overrated. Trust me, everyone could benefit from seeing a therapist!

Society celebrates the independent, self-reliant person. But true success is shared. Anyone who has accomplished anything worthwhile in this world has had others who helped them get there, whether or not they realize it or acknowledge it. Every person you reach out to for help is a contributor to your ultimate success.

And like many things in life, it is a two-way street. You may end up inspiring others to reach out to you in the future to talk, for everyone is dealing with something, visible or invisible. Unfortunately, too many suffer in silence.

 

 

The Whole Story

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.

Baby steps.

Walking Together

 

The greatest outcome from sharing my story with the world has been the opportunity to help others. Since I finally opened up about my condition four years ago, my life has taken a turn for the better. Through writing and speaking about my patient story, I’ve had many wonderful people come into my life, from high school classmates I’ve reconnected with to complete strangers who were moved to contact me in some way. I am not terribly comfortable as the center of attention, but I do it because I believe that I am part of something much larger than myself.

To be honest, I don’t consider my story to be more inspirational than anyone else’s. I’ve said that many times before. Have I dealt with a lot? Absolutely, and I won’t sell myself short there. But at the same time, I am not the only one who has persevered in this world. I don’t have the market for inspiration covered, as I know of countless others who have dealt with even greater burdens. They are the people I turn to when I need to be picked up after a tough day.

Rather, what sharing my journey has shown me is that there is a great unmet need in society for impactful stories. Everyone these days is struggling with something, and far too many suffer silently. They walk the lonely road that I stumbled down years ago. People need to be reminded that they are strong enough to get through whatever it is that gets them down, and the best way to accomplish this is to hear the stories of others. People need to hear the good and the bad, the successes and failures. Meaningful, authentic stories connect with people on an emotional level like no other story can.

The need is great. I don’t say that as an exaggeration or as an indictment on society; it’s my observation from firsthand experience. Everyone is struggling with something. This is a favorite phrase of mine. My disease has (thankfully) made me more empathetic, to the point where I can identify easily when someone is having a tough time. It is sort of like my sixth sense.

Lately I have been receiving around 1-2 emails and messages per month from complete strangers. They usually ask me for advice or thank me for sharing my story. I am flattered, sure, but more than anything I want to help each person. Sometimes I have answers, sometimes I don’t. But if I don’t, I try to at least steer them in the right direction. I don’t want anyone to encounter me and not have their situation improve in some way.

I’ve thought a lot recently about how I can help people on a greater scale. For everyone that reaches out to me, I wonder how many others read or hear my story but are hesitant to reach out. I wonder even more how many people out there would benefit from hearing anyone’s story, let alone my own.

I realize that I can do a better job of communicating on here what has helped me on my journey these last few years. As a result, I am going to write about, in a series of posts, various pieces of advice. Each post will cover a specific topic that I will briefly outline below. You can find these posts under my new column heading, “The Adversity Playbook”. My hope is that, for anyone who stumbles across my website, they can use my experience as a starting point on their journey. Bumpy roads don’t have to be lonely roads.

I am not an oracle who has all the answers. I have made my mistakes along the way, and there are some days I go against this very advice I am about to tell because I am tired, stubborn, and/or frustrated. In short, I’m human.

I make this list as a jumping off point. It is only meant to scratch the surface of what I hope to write about in future posts.

Without further ado:

  1. Don’t go at it alone!

I can’t emphasize this enough – life is not meant to be lived in isolation, especially when you are going through a tough time. It is natural to feel isolated when the world around you cannot relate to your situation, especially if it is a disease. But the sooner you recognize that you can’t go at it alone, and more importantly, that you are not supposed to go at it alone, it changes everything. I am living proof of that. I wouldn’t be where I am at today if I didn’t reach out to my family, friends and coworkers and humbly admit I couldn’t handle my situation anymore. I needed a helping hand, and I got hundreds of them in return.

Asking for help is not easy, but it is crucial. Trust me.

 

  1. Seek out others who are going through a similar ordeal

Another helpful piece of advice is to seek out others who are going through something similar to what you are dealing with. If you Google the issue – whether it’s a disease, a failure, a setback, whatever it is – you will undoubtedly find someone who has gone through it or who understands how you feel. It builds off the first point – community is essential. If you have a disease, rather than shut yourself in (which is the natural human reaction), seek out others who can understand what you are dealing with. Join a Facebook group, or an organization whose mission is to find a cure or provide services and support. It seems intuitive, but I know of many people who don’t do this, and it makes me sad.

 

  1. Don’t be afraid to fail

I am no longer afraid of failure, which is a good thing because I’ve encountered it over and over and over again, especially this year on my job search. I can stomach it because I have come to realize that anything worthwhile in life requires risk, and nothing worthwhile is given to you on the first try. If you fail 99 times out of 100, the one time that you succeed outshines the other 99 failures.

This notion has sustained me every time I fall. I am past the point where I can pick myself back up on my own. Every fall is a reminder that my body is failing me. But every time I end up back on my feet, and I take my first step on solid ground, I realize how worth it it is to get back up.

 

  1. Share your story!

When you get through the difficult times – and you will – share your story with others. When I finally opened up about my journey and wrote my first article – a piece for the Jain Foundation (whose mission is to find a cure for my disease) – a weight was lifted off my shoulders. Sharing your story will empower you and give you confidence, and just as importantly, it will help others. It doesn’t take much. Trust me, your story is not boring, and it will have an impact. Any small impact, even if it brings a smile to one person’s face, makes it worth it.

Keep in mind, the moment you overcome your difficulties, someone is experiencing that hardship for the very first time, and they don’t know where to turn. You can be that beacon of light for someone else, as only you can.

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If you have any questions about any topic on here, or anything that is not covered, please don’t hesitate to reach out to me, chrisanselmo@gmail.com.