I wanted to let you all know that my foot, thankfully, is NOT broken! Getting x-rays on my foot was a bit unnerving however. I hope I don’t have to go back any time soon.
They weren’t clear if it was a strain or sprain but they are thinking it was a bad strain, which I’ll take given the circumstances. Still quite sore, especially when it rubs up against my leg brace, but I at least feel some improvement today.
To thank my bag of butternut squash for its emergency service as an ice pack, I will eat it with dinner tonight. After all, that’s the dream of any bag of vegetables, right?
I don’t usually write after a disease-related traumatic event but today is different. I’m writing now because I need to distract myself, and quite honestly I don’t know what else to do.
I stumbled this morning when I looked out my window at construction taking place on my building’s exterior. It was early, I was exhausted, and I wanted to see if I should turn on my air conditioner to drown out the noise. As I was walking back to bed I bumped into a table, stumbled, and twisted my left foot.
I felt a shooting pain like I’ve never felt before. I don’t take proper steps, since my legs and calf muscles are so weak that my legs bow out. One little bump from a table and it is enough to cause my foot to roll over. The pain is concentrated below my pinky toe, on the foot itself. It feels like it is on a joint of some sort, or underneath, or on top, who knows. This is a new pain for me, and to try and isolate exactly where it hurts would only lead to more discomfort.
I can deal with the pain, but what scares me is what the underlying pain will mean to my future. Tomorrow morning I go for x-rays. Is it a sprain? A small fracture? I have no idea. My foot, six hours later, still hurts a lot, although the pain has been dulled by my trusty frozen bag of butternut squash.
Ugh.
I hope and pray that it is just a sprain, and not a break. I cannot afford to be off my feet for any length of time, or even in a walking boot for that matter. I don’t have the strength or stability to walk in a boot. If I am stuck in a seated position, I will get weaker even faster, which is especially concerning since I have gotten noticeably weaker in just the last few months. To speed up the weakening process means that my walking days are numbered.
As I sit propped up in bed, surrounded by phones, remotes and pillows, I am thinking about what comes next. I try not to dwell on the future, partly because it is a scary place but also because there is so much unknown. As my friend Rhamy cheerfully likes to say when I worry about what lies ahead, “Hey, you could always get hit by a bus.” With that uplifting piece of advice in mind, I try to live in the present as much as possible. I accept my situation, but this is still a scary world I live in and that I will never get used to.
I’ve learned that it’s okay to be afraid – perfectly normal – but now, more than ever, I must put on the face of resilience. Every time I share my story with audiences I talk about what has helped me overcome adversity when times get tough, and I must take my own advice to heart right now. I don’t know if that gives me more credibility or less to talk on the subject, but that isn’t my concern at the moment. All I care about right now is trying to stay afloat on an angry sea of adversity, fearful that the anchor I threw over the edge of the boat won’t find the bottom in time.
I don’t know what tomorrow will reveal. I am hopeful that it is just a sprain. But if it is more than that – a fracture, no matter how small – this could be the beginning of the end of my time walking. It is a future that will come at some point, but I hope that time isn’t now.
My foot is starting to get wet. My butternut squash is beginning to leak so it looks like it is time to wrap up this post. I’ll keep you all updated. Thoughts, prayers, whatever you like to give to others, are welcome right now. I’ll take whatever help I can get.
Unlike my leaky bag of squash, I’m not ready to give up. Hopefully my body feels the same way.
Last Monday – February 29th – was Rare Disease Day around the world. The day exists to raise awareness about rare diseases and the urgent need for increased funding in order to bring about treatments. Just as important, the day celebrates patients like myself who are living with a rare disease, and helps to reinforce how we are part of a much larger community. According to Global Genes, there are approximately 350 million people around the world living with a rare disease, which shows that collectively, we are anything but rare!
I had the honor of speaking at the Massachusetts State House as part of their ceremony to commemorate Rare Disease Day. I was actually supposed to speak at this event last year, but, as I’m sure you all remember so fondly, it was a terrible, terrible winter. I simply could not make it downtown with all the snow on the ground. Fortunately I was invited back this year, and I gladly accepted. Even better, there was no snow to be found.
I had not been to the State House in many years, and had never been in the Great Room – a large, open room on the second floor with high ceilings and natural light shining through the roof. It was 65 and sunny out, so there was plenty of sunshine in the room, which set the mood for the uplifting ceremony.
I was the third of four patients to speak, after opening remarks from the emcee and a state representative. There were over 450 people registered for the event, and almost all of them showed up, as all the seats were full and the back area was standing-room only.
When I got up on stage I was a little nervous, but then I calmed down and started talking. I reminded myself that I had given this talk many times before. I could have used notes but decided not to. For some reason I am more comfortable when I memorize what I am going to say rather than referring to notes as signposts. Every time I watch a speaker look at notes I get distracted, so I try to not be that person, even though it is perfectly ok.
My speech turned out well, although I always feel like I can do better. I am a bit of a perfectionist. Afterwards, I was approached by several people in the audience who enjoyed hearing me speak, and wanted to connect after the event. Perfect speech or not, this why I do it. I enjoy using my story to help inspire others and to open new doors for myself that would not have opened otherwise.
The only downside to the day was that it was exhausting; I just don’t have a lot of energy anymore. I tired out quickly from standing and talking to people, then sitting down for long periods of time, then alternating sitting and standing as the photographer took pictures. I got home afterwards and took a nap, and ended up missing class.
Nonetheless, it was an exhilarating day. In addition to speaking, I also had an article published on STAT, which has been a goal of mine since it launched late last year. STAT is a life sciences website owned and operated by the Boston Globe. I am one of the first patients to be featured on the site, which is quite exciting. Hopefully there will be more opportunities for me to write for them in the future.
I heard from people from all parts of my life who liked and commented on the article, and who wished me well as I spoke at the ceremony. All in all, this was a day and an experience that I will never forget.
Here are some links to the pictures that were taken at the ceremony:
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.
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.
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.
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.
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:
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?
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?
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.
My favorite building in New York, the Flatiron building.
Back when I was a member of the working world and had an actual income, I would try to visit my sister as often as possible at her home in North Carolina. It was only a two-hour flight from Boston to Charlotte, so it made for a convenient weekend trip. When my niece Sophia was born two years ago, there was added incentive to come down and visit. If it was possible to come down once a month, I would.
It is such a different world down here. The people are friendlier and the pace is slower. Sweet tea and biscuits are the norm. North Carolina, and the South in general, is different than Boston in almost every way, both good and bad. For my sanity I have found it important to get out of Boston every once in a while, to experience this more relaxed, deliberate way of living.
Now that I am back in school it has become more difficult to visit. The only reason I am down here now is because I have a scheduled doctor’s appointment tomorrow. The appointment is part of a clinical outcome study that monitors the progression of my muscle condition. Thankfully one of the testing sites is in Charlotte, and it gives me a convenient excuse to visit the area and combine the trip with seeing family.
Charlotte has quickly become a home away from home. My sister and her now-husband moved down here a few years ago from Washington D.C., right after I graduated from college and around when I started experiencing symptoms. I remember helping them move to their apartment overlooking Lake Norman. I carried heavy boxes up three flights of stairs without much of a problem. It seems like a lifetime ago. It has been a humbling decline, but through it all, my excitement for being down here has never wavered. It is just so relaxing.
Could I live down here full-time? Probably not. My future is too ingrained in the Northeast and I value having everything I need within a short radius. The rest of my family lives in Connecticut and I value being close to them as well. Down here, whether you are in Charlotte proper or in the countryside (especially if you are in the country), you have to drive everywhere. The gas station, the supermarket, the restaurants – they are all spread out. I like to be able to walk outside my apartment and have five different food options, two bars, a CVS and a grocery store all within a couple blocks, and know that there are several more in every direction.
May weather is perfect – come August, not so much.
Then again, there are views like this one right outside the door. To the city-dweller, this is something called grass. And those tall things in the distance are trees. The only open space in Boston can be found in parks. Of course, with this open space comes mosquitoes, bees, stray cats, and somewhere in this county, a black bear (according to the news).
I admit the food down here is not the healthiest, but it sure is tasty. The skylines of most towns are dotted with tall signs for every chain restaurant you can think of: McDonald’s and Burger King for sure, but also Zaxby’s, Bob Evans, Hardee’s, Steak ‘n Shake, Cook-Out, and my favorite, Bojangles. You can’t beat their chicken strips, mashed potatoes and mac and cheese, along with their sweet tea and biscuits. I’m not a huge sweet tea fan. Every time I drink it I feel like my teeth are about to collectively fall out. Which actually brings up a quick point of caution: if you order tea down here, they give you sweet tea by default. That’s almost as bad as Dunkin’ Donuts putting cream and sugar into a “regular” coffee.
This post isn’t meant to be a comparison of whether North Carolina or Boston is better; instead I like to think of them as perfect complements. North Carolina could not be more different from Boston, and that is quite ok.
Once I am back in the working world, and once this clinical outcome study is over with for good (I have one more year), it will be nice to come down here and visit for the sake of visiting. It will be nice to spend time with my sister’s family without thinking in the back of my mind about an impending appointment, which, although it serves an important purpose in collecting data necessary for future clinical trials, reminds me of how far I’ve declined.
As I get ready to leave now and head into Charlotte, I can’t help but think about how next time I visit, my sister’s home will be a family of four, not of three. In October I will have a new nephew to play with. I will find a way to make it down here, escaping the obligations of my life up north, if only for a weekend.
As his Boston-based uncle, I have to ensure that he grows up a Red Sox fan.
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.
Sidewalks and Stairwells 