25 Years of the ADA

In 1990 I was a three-year-old bundle of energy who was just beginning to understand the world around me. My personality was starting to show, which included taking joy in terrorizing my big sister (she wanted to flush me down the toilet – true story).  It was a blissful time. What I didn’t know was that hundreds of miles south of where I was growing up, a landmark civil rights bill was passed that would one day have a tremendous impact on my life.

On July 26, 1990 – 25 years ago today – the Americans with Disabilities Act was signed into law by President George H.W. Bush.

Embarrassingly, today was the first time that I read the actual language of the act. I always knew what it stood for, and what it meant, but to read it was a powerful experience. Here was a law that finally provided people with disabilities the right to employment and to public access without discrimination, and that offered a fair(er) chance at achieving the American Dream. Future buildings would have to be ADA compliant, ensuring equal access for all. It is because of these changes that I can live a productive life today. I can attend college and find gainful employment without thought given to my disability.

That said, it is not a perfect law. Unemployment is rampant for people with disabilities. Buildings built before the act was passed are still inaccessible. Many places that should be more accessible, for whatever reason, are not. There are numerous anecdotes from people who have encountered barriers in public places due to the carelessness and ignorance of others. There is still a long way to go for people with disabilities to feel truly equal in society. The stigma of disability continues to be pervasive.

However, to nitpick the law for its flaws is to miss the point entirely. The ADA was one colossal step in the right direction.

As I’ve said in previous posts, I can’t imagine what life was like for people with disabilities before this law was passed. I am forever indebted to the trailblazers who advocated for this law for years, people who even climbed the stairs of the Capitol one step at a time to get their point across. I had never heard of the Capitol Crawl before – reading about it gave me chills.

While researching the history of this law, I also encountered the opposition raised at the time to its passing, mainly how it would inconvenience business owners to have to make accommodations. For some – such as small business owners – they had a valid point. The costs of accommodation would be taxing on their bottom line. But to hear how others considered it an unnecessary burden and a compliance headache –  that makes me mad. The burden of disability is infinitely more difficult than the added burden of complying with the law. I wish I could have met the person who said that.

Rather than go on a rant, I’d rather commemorate this day by sharing a few examples of hope and inspiration I’ve come across during my journey into disability. The first is Ekso Bionics – one of many companies in the exoskeleton field who are seeking to end physical disability altogether. Paralyzed people are able to walk again with their technology; it is astounding. Even writing that sentence is mind-blowing. As their technology is enhanced and refined, there is no doubt in my mind that it will help me someday to keep walking.

Here is a TED talk about Ekso from 2011 that is one of my all-time favorite TED talks:

My second link is a feature that aired on ESPN on Father’s Day about Pete Frates.

Pete is a former Boston College baseball player battling ALS, who was instrumental in making the ALS Ice Bucket Challenge go viral. It is an honor to think that I go to the same school that he attended. Driving down Beacon Street every day, I pass by the baseball field right before pulling into Fulton Hall. I can’t help but think of him every day when I see the field. I know a couple people who played baseball with him over the years, and can attest to how great a person he is. He is a constant reminder to me of what a positive attitude can do no matter the odds one has to face.

Some of the strongest people I’ve met or have read about do not have any physical strength. Some have trouble talking, or are unable to talk on their own. For some, their disabilities are cognitive rather than physical, yet they overcome their obstacles just the same. To live with a disability on a daily basis, and do so triumphantly, without complaint, is one of the highest forms of living one can achieve. I haven’t quite gotten to that level yet, but I know I am closer because of the shining examples of others.

With Pete’s attitude, and with the help of a bill signed into law 25 years ago today, a full life is possible. Anything is possible.

People who were once paralyzed are now walking again. How cool is that?

Trusting the Journey

I still can’t believe I ended up in New York.

When my internship hunt began last fall I wanted to stay in the Boston area, where I am comfortable and where I feel safe. Boston is familiar; it is a constant. It is an anchor in my otherwise change-filled, stormy existence. As a result, I never seriously entertained the thought of moving to another city for a job, especially a city as large as New York. I have nothing against the Big Apple, however it takes a special person to thrive amidst the hustle and bustle. New York is not for the faint of heart – it is big and fast and uncompromising. It is the type of place that will eat you up and spit you out if you aren’t careful. You have to keep your head on a swivel and your focus sharp otherwise you will get overwhelmed by its unrelenting pace. Some people thrive in New York; others wilt under the pressure.

I distinctly remember having trouble adjusting years ago when I visited the city, a time when I was far more mobile. Every time I’d come down to visit I’d end up with a massive headache, whether it was from the adrenaline rush or from sensual overload. I never felt comfortable in New York. Fast forward to last November. New York was still not a credible option. Even if I found a job in the city, I thought, the logistics would be a nightmare, or at the very least a hassle I didn’t need to endure. Fate apparently had other ideas. One night at the last moment I decided to attend a company information session, and came away impressed. I felt I had nothing to lose in applying. Next thing I know I was booking a train down to New York in the dead of winter. Shortly thereafter, I was given an offer I couldn’t refuse.

So naturally, where am I writing this from? New York. As I’ve learned by now, life doesn’t follow a script. It’s funny how it all played out. I remember telling myself at each stage of the interview process that I wasn’t going to go through with it, but a voice deep within kept telling me it was a risk worth taking. Every time I wanted to stop the process and withdraw my name from consideration, I said yes when I was convinced I was going to say no. At the end of the day, it was the right opportunity, at the right company, at the right time in my life. This chance may never come along again. The hourglass of my mobility is slowly, steadily, draining towards empty. If I didn’t move to New York now, would I ever get this chance again, while I can still walk on my own two feet?

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When you can’t walk the streets, find a rooftop.

I am three weeks in, and am happy to report that I have acclimated myself quite well. Thanks to the support of my parents and my fellow BC’er who I’m interning with, the logistics have worked. I am happy with my decision, especially since it is only for a summer and it provides a perfect test run of the city and of the job. I have adjusted about as well as I can reasonably expect. However, the adjustment has not been without frustration. When is it ever?

I used to love walking down streets and getting lost in my surroundings. New York has some of the most beautiful architecture in the world and a variety of neighborhoods with varying degrees of grit and charm. Each street is famous and unique in its own way. Going for walks was always a favorite activity of mine. Exploring neighborhoods always added context to my life. To have my ability to walk slowly taken from me, as you can imagine, has been excruciating. I don’t mind not being able to run and I can live without climbing stairs, but walking freely has been the toughest ability to lose. Since New York is so big and so many of the subway stops are only accessible by stairs, I have to be driven everywhere. I can’t tell you how many buildings I’ve passed by that I want to see in greater detail, or restaurants I want to wander into and eat everything on the menu.

In Boston I have been able to distract myself from what I’ve lost by focusing on schoolwork and spending my time with friends. I know which places I can go to and which to avoid due to inaccessibility. Here in New York, it has been quite the learning curve. It has taken me a while to build up comfort with the city, and believe that there are actually places I can go to that are accessible. Right now whenever I hear about a cool place I check Google Street View and Yelp, only to find out more often than not that I can’t get in. This year marks the 25th anniversary of the Americans with Disabilities Act, yet I still often feel like an afterthought in an able-bodied society that values “historic preservation” over inclusion. I can’t even imagine what it was like 25 years ago.

But none of this is new to me, nor is it unexpected. The most difficult adjustment has been in answering questions about my disability. Since I am in a new city, in a new place of employment, I am surrounded constantly by new people. Inevitably, I am getting a lot of questions such as “Did you injure yourself?” or “What happened to your leg?” as I fill up my cup of water or while I’m being driven to work. Some people have asked where I live, and when I tell them it’s only three blocks away, they say “Oh nice, it’s not a bad walk then.” For that answer, it’s best to nod.

It’s not a fun spot to be in. On one hand, when someone asks about my crutches I could say “Actually, it’s not an injury, I am disabled” and watch as the person’s face contorts in horror. On the other hand, I could outright lie and say “I injured my back”. I don’t like either extreme, so the best answer is usually somewhere in between; a half-truth if you will. “Yeah, I’m having leg problems” or something like that. The fewer words the better. Usually when they realize you are not willing to talk about it they drop the subject. When they ask where I live and assume I can walk three blocks, I know they mean nothing by it.

These questions hurt. They force me to have to answer about why I am different (my crutches and how I walk), yet deep down I know that the person is sincere and wants to feel empathy for me, so I have to answer respectfully. If I answer “Yeah, I can walk it under extreme duress”, they become humiliated, I become humiliated, and no one leaves that conversation feeling good about themselves.

This is why I like to tell everyone – especially if I am in a new group of people – as soon as possible about my condition. Although I don’t like bringing it up, it’s like pulling off a band-aid: it is better to get the pain over with as soon as possible.

You are probably thinking by now that I’m having a terrible time down here, but I assure you that is not the case. Improbably, despite these bumps in the road – and that’s what they are, small speed bumps in the grand scheme of things – I have adapted to my surroundings. You see, a city like New York shows you quickly what you are made of. Although I’ve encountered the inevitable ups and downs, there is nothing this city can throw at me that can compare to what I’ve been through.

New York has thrown me out of my comfort zone, but then again I can’t remember the last time I was in my comfort zone. Playing it safe won’t get me to where I want to be. At this point in my life, I have come to believe that there is something greater at work, and I have to let it play out. The dots are connecting. Whether I am actually on the journey towards the cure for my disease, or I have merely tricked myself into believing it, I don’t know.

But what I do know is that I am not satisfied. Until I can say that I can walk those three blocks home without lying through my teeth, until I can say yes to going somewhere without dwelling about accessibility, until my body doesn’t feel like a prison anymore, I will not be satisfied. I will put up with every disappointment, every frustration, every question, every societal injustice I have to if it makes it worthwhile in the end.

I still can’t believe I ended up in New York. Then again, I’m right where I need to be.

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My favorite building in New York, the Flatiron building.

Marathon

My school year ended late last Wednesday in the atrium of Fulton Hall, when the finalists were announced for the Diane Weiss Consulting Competition. Only three out of twenty teams were selected for the finals, and my team was not one of them. Although it would have been nice to take part in this prestigious event, I was relieved that my first year was officially over. No more exams. No more presentations. No more late nights editing PowerPoint slides and writing reports. Just like that, I was free to do anything I wanted.

I could sleep in.

I could nap.

I could have a midday, mid-week beer and not think twice.

It was a great feeling to be finished. When I returned to campus to watch the finals on Thursday, I saw the collective relief on the faces of my classmates. Many had come straight from the golf course; others from somewhere else outdoors.

We were done. We survived.

Looking back on these last eight months, my first thought was of how fast it all went by. I remember my first day of orientation like it was yesterday – I showed up on my scooter, knew no one, and worried what people might think to see someone using crutches. Would I be judged by my peers before they had a chance to know me as a person?

Fortunately, these worries proved hollow. I would not have gotten through these last eight months without building a solid group of friends. In a small program such as the MBA program at BC, you get to know everyone quickly, and are in the same classes with the same people all year long. Repetition builds familiarity, familiarity builds friendship, and friendship builds comfort. The first year of business school is a nonstop mental grind, so any comfort is cherished.

The year flew by like a sprint, but in many ways it was also a marathon. Unlike undergrad where classes took place over the course of a semester, this year I had new classes every seven weeks. A semester’s worth of material is crammed into each quarter, which can make it tough to keep your head above water. If you miss a class, you fall behind; there’s no way around it. The amount of homework and reading was unlike anything I’ve ever experienced before. I signed up for this, but it was still tough.

I was in a constant state of stress. My sleep schedule was completely thrown off. My eating habits reverted back to my time at Northeastern. I was warned by those who have gone to business school that it would be a difficult transition, even for the able-bodied. They were absolutely right. For someone like myself who is already low-energy, it meant that physically I was out of whack the entire year. I can already feel a difference and I haven’t been done a week. The stress has melted off. I am sleeping better, eating better, and overall, feeling better. Although I wouldn’t change the decision I made, during the heat of the struggle I did find myself asking whyWhy put myself through this physical and mental stress? Every time I arrived at the same answer: the reward will be worth the pain.

It’s interesting how we as humans willingly put ourselves through prolonged periods of stress for the hope of some better payoff in the long run. We deny ourselves enjoyment in the short-term, investing hours and hours of hard work and stress in order to say that we achieved a major goal. We hate every minute of the torture, the pain, and the sacrifice. We always complain to ourselves (and to others) that the ends can’t possibly justify the means. But they always do.

There is no better example of this than a marathon. My marathon happened to be business school, but for others it is the actual 26.2 mile journey. Just a few short weeks back was the Boston Marathon, which took place on a rainy, windy day. Although the conditions were less than ideal for watching, it was perfect for runners. Thousands of runners run the marathon every year, cheered on by over half a million spectators. No matter the weather conditions, it is always an amazing day. Some runners run competitively, while many others running for causes near and dear to their hearts. Four of my classmates ran the Boston Marathon, representing causes from the American Liver Foundation to the Dana-Farber Cancer Center.

This year, I happened to be someone’s running cause. Through a friend, I was lucky enough to have gotten involved with Genzyme’s Running for Rare Diseases program, which matches an employee at Genzyme with a patient with a rare disease. My runner was Sara Cole, about as nice of a person as you can find. She ran the Providence Half Marathon on my behalf on May 3rd. It’s never ideal to have a condition that someone is running to help cure, but on the bright side, it proves that there are many wonderful people out there in the world.

I often think about what it would be like to run a marathon. Maybe someday I’ll regain all my muscle strength and will be able to withstand the endurance training to find out. That would be funny because growing up, I hated running. Hated it. It would always make me nauseous and I was never good at it. We’d have to run all around the Hall High School field, and every time I would walk to the finish line. It was miserable. My back would always end up hurting because, well, things were going on in my body I wasn’t aware of at the time.

I would do anything to have the chance to run again. I wish I could be the one doing the running vs. being the person that someone is running for, but I am still extremely grateful.

In the meantime, I must focus on the mental marathons. It feels good to sleep in, but like any good marathoner, after the rest comes preparation for another. One year is down, but I still have an internship, a second year of school, and the rest of my life ahead of me. There is still much to accomplish.

 

Undefeated and Unbroken

My first year of business school will be over in three weeks.

That statement makes me feel a whole range of emotions. I’m relieved that the nonstop grind of the last ten months is almost over. I’m sad that I won’t see most of my classmates for three months, and that it will be the last time that we all take classes simultaneously. I’m thankful for the many friends I have made, and for their generosity and help in making my first year manageable. I’m excited for the opportunity to live in New York City for the summer, to intern at Pfizer, and for the many wonderful opportunities that lie ahead in the second year.

I look back on my hopes and dreams when I started orientation last August and feel like I am living the best-case scenario. Back then I worried about whether I would make any friends (a dumb concern in retrospect, but any time you are with a new group of people, you never know), whether I still had the brain cells to navigate an MBA curriculum, and whether I would have an experience that would justify both the tuition and the opportunity cost of leaving my job.

Although I am living the best-case scenario, it has not been a walk in the park. Like the rest of my classmates, I have had to fight for every success and have encountered many failures along the way. It is humbling (and also quite frustrating) to be rejected by so many employers, but one of my greatest areas of growth in the last year has been in handling rejection. Rejection is part of life. It always feels unfair because we know what we are worth and what we are capable of. Unfortunately, others have little information to go on besides a resume or a snap judgment.

As I reflect on the numerous ups and handful of downs from the past year, I wanted to write about two examples I saw recently on TV that got me thinking about the subject of adversity.

A couple weeks back I was watching the NCAA tournament. Kentucky was undefeated and in the Final Four, looking to fulfill their destiny of winning a national championship. No team has ever gone 40-0 in a season, let alone 38-0, which was their record at the time. The last undefeated team going into the Final Four was UNLV in 1991, with the last team to go undefeated being Indiana way back in 1976. These dominant teams come around once in a generation, and it could be argued that this Kentucky team was the best of the best.

As fate would have it, they ran into a Wisconsin team that was hungry for revenge from last year’s Final Four matchup, which Kentucky won in the final seconds. This time, the Badgers shocked the world and knocked out Kentucky 71-64, ending Kentucky’s chance at a perfect season. The Wildcats didn’t play their best game, and their dreams were shattered as a result.

I understand the disappointment of the players. There was only one goal in mind all season – to win a national championship. Many of them could have been stars at other schools, but came to Kentucky for the chance to win a title before heading to the NBA. With this one loss, all their accomplishments were for naught, and their season is now considered a failure, as cruel as it is to say.

After the game ended, many of the players walked off the court without shaking hands with their opponent. In the press conference, one of the players cursed a Wisconsin player under his breath, except that he made the mistake of leaning into a live mic, enabling the world to hear his true thoughts.

I am not going to sit here and write about how well I handled things when I was 18 or 19 years old. I made many stupid, cringe-worthy mistakes at that age. Kentucky had everything break their way during the season, so to have it all come crashing down from one bad game is unfortunate. However, we are often tested with situations like this in life, where everything is going well and then the worst happens. The better we deal with it at the source of the pain, the easier it is to overcome. There is no doubt that someday they will look back on how poorly they handled themselves after the loss and cringe. It is a part of growing up, and is unfortunately one of those situations we only learn from through firsthand experience. Handling it poorly makes the disappointment worse, but its hard to know that at the time.

The next night, tired after a day of homework, I decided to rent Unbroken. I read the book over winter break, about the amazing life of Louie Zamperini, and felt that I needed inspiration on that night. I was getting bogged down by schoolwork and was losing perspective on why I was enduring so much stress. I knew going in that the movie didn’t live up to the book, and it certainly didn’t. To be fair, it was impossible to jam everything that happened in the book into a 2+ hour movie, but it still felt like the CliffsNotes version of his life, even leaving out his troubles after the war.

Watching it still produced the desired effect – to inspire me to keep grinding. After all, my school stresses were insignificant compared to his struggles. I didn’t have to survive 47 days on a raft or spend three years in Japanese POW camps. It is always inspiring to know that someone can experience the worst that life has to offer and ultimately fight through it.

These two examples are proof that it is impossible to navigate life without having to deal with obstacles we’d rather not face. Yes they are extreme examples, but even in smaller doses we are going to face situations in life that we cannot control, that force us to remain level-headed under pressure. It is cliché but it is true – we learn more about someone by how they handle adversity than by how they handle success. Anyone can handle success well (although many still don’t), but it is when things go south that we see what people are made of.

The best part of this year has been learning that I can hold my own through these ups and downs. I’ve never experienced a year like this – stepping firmly out of my comfort zone, constantly meeting new people, navigating an aggressive curriculum. Every week has been a packed schedule with classes, projects, group meetings and other responsibilities that a business school student has to face. There were numerous situations that I could have handled better, but I learned from them and moved on. My GPA is respectable, my reputation is intact, and I can still amble around from class to class. If the spectrum of handling adversity is the Kentucky basketball team on one end and Louie Zamperini on the other, I like to think that I am a tad closer to Louie.

It still boggles my mind how fast life moves sometimes. I am almost at the end of year one. One year down, one to go. I can take it. I can do this. And that confidence is the greatest feeling of all.

Limitless

My first year of business school is coming to a close next month, and it’s hard to believe that I am almost halfway done. This time last year, I was still agonizing over what program to attend. It has been a whirlwind, but it has been exciting. The other day I was thinking about all that I had accomplished in the past year, both inside and outside of the classroom. Although I am proud of everything I’ve been able to experience, if you know me well, you know I am never satisfied. I like to keep myself busy, which helps to distract me from my limitations.

One of the challenges with this disease is to keep an open mind to the vast possibilities of life. It is easy to feel like doors are closing, and that opportunities that able-bodied people get to experience are no longer possible for me.

I haven’t been perfect about escaping this mindset, however one helpful exercise for me has been to take time each week to let my mind wander. Nothing is off the table. I write down anything that comes to mind, seeking to focus on what excites me or makes me happy – dream jobs that I want, people I want to meet, places I want to go, ways I can help make the world a better place. It gets me thinking about what is exciting in life, and what brings me joy. Happiness is, after all, the pot of gold at the end of the rainbow, and what gives life great meaning and satisfaction.

I then backtrack to see how I can accomplish these goals. Are there specific skills I need, or people I need to network with? What are the steps to get me to my goal?

This idea came about from a work meeting of all things. At my previous job, we would have weekly company-wide open forums where any subject would be fair game. There would be a set agenda, but after that the floor opened up to anyone who had questions. Many ideas came out of this session, which was only possible when the limits of a formal meeting structure were removed.

That got me wondering – how could I apply this limitless thinking to my own life? Could I reprogram my mind to see the world again in terms of anything being possible, vs. focusing on what was no longer possible? It started out as a quick brainstorming session one morning, and grew from there. It became an exercise that forced me to fight my way through the brick walls in my mind, to paraphrase one of my favorite quotes from Randy Pausch.

A lot of positive developments have come out of this simple exercise. It was one of these sessions where I first considered making a push to write regularly, and to blog with the MDA. The exercise forced me to think about people I wanted to meet in the muscular dystrophy field, and I proceeded to meet almost all of them. It also helped me to map out the ideal business school experience, and what I wanted to achieve once I graduated. There are still many ideas I have yet to discover, which is exciting in and of itself.

All it takes is 15-20 minutes, once a week. I like to sit at my kitchen table in my apartment, look out over the city, and brainstorm while having a cup of coffee. It is a quiet, peaceful time (as long as my neighbor isn’t blaring electronic music). I stretch my mind and think about everything I want to accomplish, no matter how small. It could even be a reminder to myself to take out the trash. It can be anything. Sometimes I sit there and nothing comes to mind, which is ok too. I feel better for at least trying.

On the weeks where I forget to do this, or am too busy and reactive to the different demands placed on me as a business school student, I get antsy. I usually look forward to this block of time. If anything, it allows me to unload all the thoughts I’ve accumulated throughout the week. Each week is such a whirlwind that I don’t have time to write down ideas that come to mind or people I want to talk to until the weekend.

These mental “open forums” are surprisingly simple and effective. I believe it can have an impact in anyone’s life, not just someone in my situation. I know others have come up with similar tactics, so I’m not pretending to have invented this, however I do know that everyone has ultimate goals and dreams they want to achieve. Everyone knows what makes them happy. To clarify exactly what happiness entails, and the steps necessary to achieve it, is liberating. Instead of cluttering the mind, it is now written somewhere, enabling the dots to be connected.

It is a freeing experience. When you focus on what makes you happy, the possibilities are endless. When you believe that anything is possible, cures are not far behind.

Through the Fire

Every once in a while in life we endure a period of time that challenges our resolve. The turbulence may last a day, a week, or a month. During this time we might face one obstacle or a hundred.

February was that time for me.

Last month was a perfect storm (pun definitely intended) of stress, bad news and adversity that came to a head all at once. I knew far in advance that this stretch of time would be a challenge – the second semester of business school is no walk in the park, whether it’s looking for an internship, managing a full course load, or working on a semester-long consulting project with unfamiliar team members. On the surface, it would seem like there is no time for the unexpected with such a busy schedule. However, many unforeseen challenges cropped up, one after another, that led me to the brink of a meltdown.

Originally I had written this post in the form of a rant – laying out there all the things that stressed me out, got me down, and made me angry. Then I deleted it. All of it. All that was left was the first paragraph. I read what I wrote over and over again, dissatisfied. I kept asking myself, what’s the point? I’m not comfortable complaining, and to rant incessantly felt like complaining. So instead, I have decided to write about how the stress affected me, rather than what led to the stress itself.

To be honest, I’m not thrilled with how I dealt with the challenges I faced last month. I started out handling them well, even going so far as to laugh at my misfortune.

Oh, you have an interview in New York on Friday? Here’s a blizzard.

Weatherman predicts 10 inches of snow? Here’s 18 instead.

You have a test today? Why don’t you enter Fulton Hall through the trash room – after all the front is blocked off, and no, we didn’t send you an email beforehand.

Smiling and making a joke out of a difficult situation only got me so far. Soon, my exasperation and dark humor crossed over to anxiety and insomnia. I could feel myself physically deteriorating under the incessant stress. Heartburn became an unwelcome guest after each meal. My nerves were frayed. I was tired. I was weak. I was miserable.

There were times where I wondered how long this could keep going. I kept thinking to myself, this can’t be what life is about. Life can’t just be struggling each and every day against a tidal wave of adversity. I knew it could be worse. It can always be worse, which made me even more frustrated. Is life just something you are supposed to endure on a daily basis until you die?

I wondered if my string of bad luck and stress would ever turn around. I wondered if it would ever stop snowing. I knew spring break was coming, but it seemed so far away. There was so much that had to be done still – presentations, finals, accepting or rejecting my internship offer in New York – before I could relax, before I could take a deep breath, hold it in as long as possible, and exhale.

But it passed. Somehow, after much praying and pleading and complaining out loud to anyone within earshot, it passed.

As I write this from the comfort of spring break, I see this period of time in its proper context. Perspective has returned, although it took many emotional bumps and bruises to get there. Physically I feel almost back to normal, which is to say, as normal as I can be given that nothing about my muscles is “normal”. As for the sequence of events that led to a near mental breakdown – some events were predictable (finals, bad weather), and others were completely unexpected (a sudden death of a close family friend). There were warning signs that I ignored that could have led me to make more rational decisions. I could have relaxed more. I could have taken more time to put things into perspective, and to enjoy the positives while acknowledging the negatives.

There is no doubt the fourth quarter will pick up right where the third quarter left off. There will be pitfalls and unexpected roadblocks, but there will also be triumphs. There will be more snow, but there will also be warmer days. The only prediction I can make is that my future will be unpredictable. That’s life.

For the week off, some classmates went to tropical locations, or to California, or overseas to exotic destinations. As for myself, I decided to go back to Connecticut, where I was greeted by (what else?) four inches of snow. Sometimes, the best vacation is home.

Warm sandy beaches, palm trees and umbrella drinks were instead found in my mind. After a rough month of February, I wouldn’t have it any other way.

A Trip to the Ice Age

When Jim Cantore is at the same location for three weeks, that is a bad sign. When that location happens to be your city, it might be time to move.

The month of February in the Boston area has been nothing short of historic, for all the wrong reasons. It is hard to believe that three weeks ago there was no snow on the ground whatsoever. I remember thinking at the time how this was a relatively easy winter, and that I hoped our good fortune would continue. Did I jinx our weather? Clearly. Did I expect 90 inches in 21 days? You can’t blame me for that.

As a result of the historically awful weather outside, I have split my time between my apartment and the BC campus exclusively, except for two occasions which were related to food and beer. Even then it was snowing both times.

For me, this hermetic pattern isn’t anything new. While hearing everyone else complain about cabin fever, I came to the (unsettling?) realization that I am immune to its effects. Unfortunately, I spend a lot more time in my apartment than I’d like, but the upside is that when the storms hit, it doesn’t throw off my normal routine all that much. I have learned to subsist on reading, writing, and doing homework as my way of staying busy when I can’t stay active. That said, I would love the chance to go outside and breathe in some fresh air. I got outside briefly yesterday which was nice, although that window has since closed, literally and figuratively. If I tried to do that right now, I’d be breathing in frostbite, perhaps even some thundersnow:

I’ve watched this video maybe 20 times, and each time I laugh. “That’s a twofer baby!” Jim Cantore is insane, but you have to appreciate his enthusiasm, even if part of me expected him to get struck by lightning if he celebrated hard enough.

All joking aside, this has been quite the test of our collective resolve. Right when you think things can’t get worse, they find a way to. Six feet of snow on the ground? Here’s another sixteen inches. Wind chill approaching zero? How about some all-time record cold.

Snow drifts.

Roof collapses.

Car accidents.

I could go on and on. As I type this, a loosened power line is dangling perilously near a window on the other side of my building.

This weather has brought the city to a standstill. The MBTA has failed the ultimate stress test, not that it took much to accomplish this ignominious feat in the first place. Two-way streets have become one-way out of necessity. People are generally losing their minds. It is only a matter of time before the news is dominated by people brawling over space savers.

It is a grim time to be in Boston – fortunately for myself I am from New England. Although this weather is extreme, it is at least something I can relate to. I’ve seen snow before, and I’ve seen blizzards. I can’t imagine being from a warm climate, or from halfway around the world, experiencing your first winter in Boston. In fact, I wonder about the Boston College campus tours. When is the last time they were able to show the entire campus? Weeks? Are the prospective students from this area? I sure hope so.

Welcome to BC, we just happen to be in the middle of the Ice Age. This snow will be gone by the time you start in the fall, promise!

It seems like forever ago that I was complaining about how unbearable it was in my apartment, when the AC wasn’t working and the nights were unforgivingly warm and humid. It seems like this winter will never end, however, it is worth remembering that this shall pass. The sun still comes up in the morning, the world still turns, and in the Earth’s path around the sun the weather will warm up again in the Northern Hemisphere. Each day is one day closer to March, one day closer to spring. It is tough sometimes to think about the light at the end of the tunnel when snow banks have morphed into Himalayan peaks. But the light is there.

During this time I think back to one of my favorite quotes, from Winston Churchill: “If you’re going through hell, keep going.”  We are stuck in this storm pattern for the forseeable future, but I like to think that we Bostonians are tougher than any other group of people. If this happened in Atlanta, or Charlotte, or even Washington, D.C., there would be pandemonium. Here, despite the increasing brutality of each passing day, we shovel, we plow, and we take selfies next to snow banks. In short, we continue on with our lives.

Of course, as I type this, the seven-day forecast just went up on my TV. Two more storms in the next seven days, including the potential for one on the day I am supposed to be speaking at the Massachusetts State House.

You can have your thundersnow Jim. I’ll take the Powerball.

photo 1
The view before the storm
photo 2
The very next day, mid-blizzard

 

What If?

Someone asked me the other day if I had studied abroad while at Northeastern. I told them I had the opportunity in my junior year but I turned it down. I had no desire to leave Boston or incur extra expenses for my parents, who were paying for my education at the time. I wasn’t much of a traveler; instead I enjoyed hanging out with friends and living in the city.

After that conversation, something began gnawing at me. What if I had known? What if I knew the challenges I would face after college?

I was diagnosed with my disease in high school, but I didn’t grasp its magnitude. I had no symptoms, so I didn’t find it necessary to do any research. I had no inclination that it would manifest so quickly. In retrospect, this casual attitude towards my condition was both a blessing and a curse.

If I knew the struggles I would experience after graduation, would I have traveled more? If that was the only decision I would be faced with, then absolutely. I would have taken the opportunity to travel somewhere – Europe, Australia, maybe even South America. I was fully-able in college, energetic and without limitations. Even though I didn’t have much money at the time, I would have found a way to explore the world while I still could. I would have appreciated that I had a narrow window of opportunity and I would have taken advantage of my mobility. Under these circumstances, I certainly wish I had traveled more.

But I don’t feel regret, mainly because I know that advanced knowledge of my disease would have had far-reaching ramifications. Had I known my condition, had I truly understood that seven years after graduation I would be falling regularly, and that I would have to purchase a scooter to travel long distances, I would have been crushed by the knowledge. It would have been too much for me to deal with while trying to remain a normal, fun-loving college student. College is the last period in your life before the real world takes away your remaining innocence. Life shouldn’t beat you down so soon.

Considering the emotional struggle I encountered when my symptoms manifested, I don’t think I would have handled this foresight very well while still in school. I would have felt like a ticking time bomb, always wondering if an ache or a pain or a feeling of weakness would be the start of my descent into disability. Perhaps I would have been so paranoid and depressed that I wouldn’t have found the enjoyment in traveling abroad.

On the other hand, maybe I would have enjoyed each day even more, and taken the opposite approach. I could have been galvanized by my impending limitations. The truth is I have no idea, and I never will have any idea. I shouldn’t go back and wonder what could have been, because the past is past. I lived the best I could with the information I had available at the time. Could I have done some more research on my disease? Of course, although it probably would have exposed me earlier to the dark reality I would soon face. Being naive isn’t always so bad.

At the end of the day, I take comfort in the knowledge that everything seems to have turned out the way it was supposed to. Had anything in my past occurred differently – earlier understanding of my condition, traveling abroad when I had the opportunity – I don’t think the sequence of events would have taken place that have put me in the situation I am in today. Any change in my mix of frustration, sadness, pain, and ultimately, determination, could have led me to a much different future. Maybe I wouldn’t have been as motivated as I am today, or I might have put myself in a situation where I fell and got hurt. Maybe I wouldn’t be walking right now. Looking in the past is counter-productive. It is trying to change something that cannot, under any circumstances, be changed. I have to be content with how things turned out, and I am.

Besides, the greatest travels are the ones still ahead of me, greater than any semester-long trip across the ocean. I do not know my ultimate destination, but I know that I am on the road less traveled.

Reflection

Looking back to August, my main concern was surviving business school orientation. Those three days were a whirlwind: meeting new people, getting acclimated to chaos, all while trying to come to grips with the demands about to be placed on me. In the months since, I’ve survived about as well as I could have hoped. The end of the semester is in sight. In the blink of an eye it is already Thanksgiving; it is crazy how time flies.

The constant stress and hectic pace have worsened my muscle disease, which I knew would happen when I made this decision. Experiencing it in real time is frustrating. I am in constant fear of falling and getting hurt, and being too weak to perform basic daily tasks. I still worry that I will not make it through the entire program in one piece. But I must press on. Fear is not an excuse to stop.

More importantly, I have a lot to be thankful for. Thanksgiving break is the perfect time to remind myself of why this struggle is worth it.

First and foremost, I am thankful for the people I am surrounded by in my life. My parents mean the world to me. I am more reliant on them now than at any point since I was a young child. I have a wonderful sister and a young niece whom I adore. My friends – what can I say – they have seen my worst days, and my best. They are always there for me when I need them.

I am also thankful to have made so many friends already at Boston College. Although the small size of the class wasn’t my only reason for deciding to attend the program, it has made all the difference in enabling me to thrive. People know who I am, and they know what I am dealing with. I have taken advantage of the platform of Eagle Talk, a sort of TED talk for our MBA class, to tell my life story, and it has lifted a tremendous weight off my shoulders. People know what I am going through now and understand my vulnerabilities.

Second, I have my health. I’ve been sick a few times this first semester, as I got acclimated to being a student again and being in a building full of germs. When I am sick I am miserable, especially since I am so weak. However, it has given me a great appreciation for my overall health. I also know others who are going through much worse. Keeping this perspective is very helpful. Besides love, there is no greater wealth in the world than being healthy. We only get one shot at this life.

Lastly, I am doing what I want to be doing, even though I don’t yet know what I want to be doing. That may seem ridiculous, but it isn’t. I am motivated by change – making a positive change in my own life (furthering my education, and hopefully my income), and in the lives of others. I want to help as many people as I can, especially those with disabilities. The MBA program will lead me in that direction. I am beginning to understand my true purpose, which I realize is something that not a lot of people can say.

My condition is not something that I enjoy. But with a little reflection, and some time off to breathe, I get to see that there is so much more to life than my frustrations. Life is worth fighting for, every minute of every day.