History Lesson

This has certainly been an interesting time in my life. The last four months – heck, the last sixteen months – have been a complete blur. That is business school after all. That’s what everyone told me would happen. The last sixteen months have been a whirlwind of classes, exams, social events, and conferences. It has been full of sickness (thankfully not norovirus), weakness, laughter, stress, exhilaration and frustration. I even became a New Yorker for a summer.

Through it all, I have managed to stay afloat, although each semester it seems to get tougher. I remember back in September it was especially harrowing, so much so that I wondered how I would ever make it to winter break. Well, here I am – battered, bloodied, but otherwise unscathed.

When I was home for Thanksgiving I was almost through the madness, but faced another two weeks of final exams, papers and presentations. Thankfully, I still took some time to read for fun. I am a huge history buff, especially the Civil War. My mom brought down a few books I had on the subject that were collecting dust on a bookshelf. They provided a welcome escape.

One book was on the battle of Shiloh, one of the bloodiest battles of the Civil War. It was 350 pages, but I flew through the book in no time. It was fascinating to think that the Union army under Ulysses S. Grant could be caught so off-guard by the Rebels. The situation got so bad on the first day of battle that they were nearly driven into the Tennessee River and forced to surrender.

What Grant did next helped motivate me to think of my challenges in a new light. His army was routed on the first day, but it was not defeated. There is no question he shares a lot of the blame for being unprepared in the first place, but his reaction to his circumstances helped change the face of the battle, and ultimately the war. Instead of retreating across the Tennessee as his subordinates pleaded, he decided to fight back and surprise the enemy the next morning (it’s always an easier decision when you receive overnight reinforcements).

The Federals surprised the Confederates and drove them out of all the land they conquered the day before. By the end of Day 2, they had recovered all their lost camps. The cost? Over 23,000 casualties. The Battle of Shiloh was vicious, but it showed the power of keeping cool when everything is going wrong, and of taking bold risks when the situation dictates prudence.

Now, I would not equate what I am going through to war, not in the least. But it is a struggle. Reading about the battle, I almost felt like I was being pushed relentlessly back by adversity to the brink of failure. I had no choice but to respond. I needed to complete my classes. I needed to network and find a job. Failure is not an option for me. I had to push back, and thankfully I was able to. Now I am on break and can rest for a month, although the struggle is far from over.

That’s not to say the last four months have been all sour grapes. In fact, this period of turmoil has been instrumental in forcing me to think about what I really want to do in life. Not what types of jobs I should be getting with an MBA, but what I really want to do. A lot of the jobs posted I haven’t been able to get my heart into, even though they are great positions. Through my circumstances, I have come to learn and to appreciate that I am on the road less traveled, as Robert Frost would say. I have been given quite a unique hand in life. Thankfully it could be much worse, but my disease is an unrelenting nuisance.

Because this condition is so rare, oftentimes I feel like I am alone. I do my best to explain my situation to others, but I still feel like there is a disconnect that can only be bridged by having someone walk in my shoes, and I wouldn’t wish that upon anyone. The only compass I can rely on is the one inside of me. There is no blueprint for how I should live my life with this disease. Only anecdotes.

Although different, I have come to realize that although my circumstances have their disadvantages, they also have their advantages. My disease has lit a fire in me to make a difference in the world. I could easily see myself, without this disease, living a safe, comfortable life. I probably wouldn’t have even gone to grad school. There is nothing wrong with a safe, comfortable life – that is a blessing to have in this day and age. But there is something hard-wired into me that seeks a different life. It’s like I have this burning desire to do something no one else has done. I guess that makes me an entrepreneur, but I don’t feel like I am one in the traditional sense. At the end of the day I want to spend my time doing something that has a true, tangible impact on people’s lives, using my creativity to tell stories and better the lives of those who are in need of inspiration.

How this will manifest itself in my life I have no idea. Should I be a speaker? A writer? All/none of the above? I don’t know yet. I am letting the process play out while being proactive. I have my first speaking engagement in February. If it works out, it may lead to many more, and I may have my answer. Whatever the answer ultimately is, I will be comfortable with it. Long ago I stopped questioning my purpose in life, as the dots seem to be connecting every time I look back. I just have to be patient, and as I’ve said before, trust the journey will take me someplace worthwhile.

And hey, if the road gets bumpy, it never hurts to be reminded that when you are up against a river, you still have what it takes to fight your way back.

Keep Hope Alive

So apparently my last blog post was on September 1st. Today is October 2nd. Yikes. That’s right – I went a month (a month!) without writing a post. In my world, that might as well be 10 years.

For the last couple of weeks I could hear the clock ticking in my head to write something – anything. To go a month without a post is a great way for me to go insane. After all, writing is my outlet, just like exercise is to so many others. Today – finally – I found some time to write, and I already feel better.

September was a whirlwind of a month – much bumpier than expected. I thought the second year of business school would be easier than the first, but I was wrong. New classes, logistical challenges and a setback on the job front made for a rough last few weeks. Sleeping became difficult again, and my heartburn returned, although not as bad as it was this time last year.

Although I’ve been busy, the other reason it took so long to write this is because I wanted to wait until I was level-headed again. I don’t like ranting, and I don’t like writing in the heat of the moment. The internet has a long memory – the last thing I need is to say something I will regret later on. Twitter has been the downfall of many for this very reason.

I like to think that I am capable of handling adversity, but I am still prone to falling into an extended funk when things don’t go my way. This last month showed me I still have to get better at remaining calm. I am not a pleasant person to be around when I’m sulking.

Fortunately, adversity is a topic I’ve written extensively about these last few years, so all I had to do was go back and reread (at my mother’s urging) pieces I’ve written in the past. The best person to give advice to me is, apparently, my former self. Reading these older posts was a useful exercise in remembering just how far I’ve come. I was reminded of how difficult everything was for me a few years back, when I was first trying to come to grips with a weakening body and the loss of many abilities. It put into perspective the challenges I’ve faced in the last month, which, lets face it, are minor in comparison.

My challenges today are more existential than anything. Class isn’t overly difficult, and I’m free during the day, so it’s not like I am overwhelmed with tasks, outside of a few meetings here and there. I guess part of what I’m struggling with at the moment is figuring out where I fit in the world. I feel like I am holding a piece to a puzzle, only I can’t find the puzzle. I can’t figure out where I belong, but I also feel like that I am destined for something great. I don’t mean that in an arrogant way, but I feel like I am meant to go through all of this to help others. I feel like that is why I’ve suffered, and also why I am so willing to share my story.

Right now though, I don’t know what job that translates into. Should I get a real, MBA-level corporate job, or become a motivational speaker? Should I become a writer and write a memoir or a screenplay, or work at a pharmaceutical company? I don’t know the answer. Can I do everything? I wish, but I don’t have the energy to. I have to choose wisely. I also have to weigh monetary concerns – I have to make sure I’m earning an income when I graduate since loans will be breathing down my neck before I know it. I’m casting a wide net so I don’t constrain myself or turn away opportunities I may not have initially considered. I am open-minded, but with that mindset comes additional stress. I’m confident I can work, speak, and write simultaneously, but what mix of the three is appropriate? I’m not sure.

But, I’ve gotten through uncertainty before and I’ll get through it again. I’ll get through it because I have to. I’ve come too far – with continued persistence and a chip on my shoulder that has served me well to this point, I will become something. I just need to keep grinding and keep fighting. I didn’t come this far to give up now.

The Only Constant is Change

Just like that, it’s over.

My summer in New York was quite possibly the fastest ten weeks of my life. It seems like yesterday that I was pulling my hair out trying to find a place to live, scouring Craigslist and a host of other sites for an apartment that was accessible and that I could afford. That hunt took place back in May; now it’s August, and the summer is just about over. But what a summer it was.

Spending ten weeks as a finance intern at a Fortune 50 company is an intense, fast-paced experience. Pfizer is a company I had wanted to work at for a while. Over the course of the summer the MBA interns were given the opportunity to meet with executives at the company to learn about their careers and to engage them in Q&A. One of the highlights of my summer was getting to ask CEO Ian Read a question, which was a huge thrill. Additionally, the interns were assigned a case study that required talking to people all throughout the company in many different functions. It was a great way to meet employees we normally wouldn’t interact with, and learn about the industry in a way that we wouldn’t have been able to otherwise.

The Pfizer building on 42nd and 2nd – my home for ten weeks.

I didn’t intend to leave Boston for my summer internship, but looking back I am happy for the change of scenery. I will always love Boston, but sometimes you don’t know how much you love something (or someone) until you are away for a period of time. In New York I was able to catch up with friends I hadn’t seen in years – and in one case, since high school. Although I wasn’t able to walk around the city as I would have liked, it was still a rewarding experience to meet up with friends, even if I kept meeting up with everyone at the same bar around the corner from my apartment. I gave Tuttle’s a lot of business.

My time in New York was not without its frustrations. The first couple of weeks were extremely rough logistics-wise. Any time I am thrust into a new situation where I have to learn a new routine, it is a difficult transition for me. I got lost a lot inside the building, which added extra steps to my day and tired me out. My original desk was far away from the bathroom, my boss’s desk and the elevators. Fortunately my desk was moved and I was able to settle in and relax.

A building bordering Bryant Park.
The W.R. Grace building bordering Bryant Park.

On the other hand, I am happy that I was doing all this walking in a new environment, in a new city, with new streets and experiences. If I have to walk constantly, I might as well be exhausting myself somewhere new and exciting. As a whole, I walked a lot this summer, and its unclear what toll it will take on my body. I was sore and stiff for many days after I left, and it’s just now starting to subside, two weeks later. I am not sure if further weakness will replace the soreness, but given my past history, it probably will. I still feel wobbly walking down the street, which is a little unsettling.

But, as I’ve written about countless times before, I have to get used to the uncertainty that my body throws at me every day. I have to be comfortable with the fact that doing something as simple as going to The Guggenheim now requires an hour of planning and costs much more now to experience (once you factor in the cab rides). This is how my life is, and I have no choice but to accept it. Fortunately, I’ve become a logistical expert through trial and error.

The Guggenheim.
The Guggenheim.

So, given how the summer played out, would I do it all over again? Absolutely.

I made many great friends in my ten weeks. I had a wonderful boss and was surrounded by supportive admins who never hesitated to ask how I was doing and if I needed anything. My friend and classmate Matt joined me at Pfizer this summer, often carrying my lunch on his tray. Many of the other finance interns showed the same willingness to help. We became a close-knit group, and will definitely keep in touch going forward into our second year of business school.

All in all it was a great time. I am back in Brookline now, relaxing before classes start back up on the 31st. I am confident that my experience has prepared me well for the future, which at the end of the day is all I could have asked for in an internship.

More importantly, I proved to myself that I can handle the challenge of living in New York City. It has chewed up and spit out many people, and for the first couple weeks, I was afraid that I would be one of them. Over time I adjusted, and I thrived. If this disease has shown me anything, it is that the toughness I am required to possess on a day-to-day basis just to function in this world makes the toughness and grit required to live in New York pale in comparison. I can handle this city just fine.

School starts in less than two weeks; life is moving at a tremendous speed. Change is constant in my life, whether it’s new classes, a new city, or my declining strength. Deep down I wonder what it would be like to have a stable, predictable life, but I am starting to believe I wouldn’t enjoy it. I can deal with the fast pace of life as long as I continue to find meaning in my struggle, and am surrounded by people I enjoy spending time with. My disease is a major source of aggravation, but it may very well be my path to living a greater life.

On to the next challenge: figuring out if I have it in me to root for BC football.

Go NU.

 

 


 

Some views from the 32nd floor of the Pfizer building:

View from the 32nd floor.

The Chrysler building, also from the 32nd floor.

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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.