2016 Jain Foundation 2B Empowered Conference

Last Sunday, I had the pleasure of attending the Jain Foundation’s 2016 patient conference in Dallas, Texas. The Jain Foundation exists for the sole purpose of finding a cure for dysferlinopathy (my disease), so I am always eager to help them when the situation arises. They knew I was attending business school and had a story that might resonate with some of the younger patients. As a result, they asked me to share my patient story, with a particular emphasis on goal-setting and navigating the early stages of the disease.

I was thrilled to speak at this conference for several reasons. First off – I’ve never been to Texas. This is actually the farthest away from home I’ve ever been. Second, I would have the opportunity to meet many people I only knew online through the Discovering Dysferlinopathy Facebook group. The only other time I had met any patients with this disease was at the 2013 Jain Scientific Conference in Washington, D.C.

I prepared my presentation a few days in advance, after I had a couple days to relax from graduation. During this time I inevitably watched segments on the news about how awful the security lines were getting at the airport. As it was Memorial Day weekend, I was mentally preparing for chaos.

We got up at 3am Saturday morning (yup, it was as fun as it sounds) for a 6:30am flight out of Bradley airport outside of Hartford. Thankfully, we had TSA PreCheck and was able to avoid the security lines since my dad was rolling me around in a wheelchair. If we didn’t have PreCheck, I think we’d still be in line.

That morning was not without drama, however. Right as we got near our gate, a woman walking down the corridor, not five feet from me, proceeded to throw up all over the floor. My dad did not see this, and nearly wheeled me right into the puddle. As you can imagine, I began to freak out and pointed at it, nearly throwing a temper tantrum to get as far away from the puddle as possible. When he finally got me to the seating area by the gate, he wheeled me around to face the corridor, just in time to see her throw up again in front of the women’s bathroom. Gross, I know. It was 5:45 am, so she either was hungover or had some sort of stomach bug/norovirus that I wanted no part of.

As someone who gets motion sick very easily, it was not the most pleasant experience to have in advance of the flight. Thankfully, that woman was not on our flight, and we made it to Dallas without an issue. We arrived by around 9:30am central time, and checked in a little after 11. I fell right asleep. I did not get much sleep the night before, even though I went to bed at 9pm.

So, to be clear, the conference wasn’t technically in Dallas. It was at the Dallas/Fort Worth Airport, at the Grand Hyatt attached to Terminal D. Given that people from all over the country (and who have mobility challenges) would be flying in, it made sense to have the conference in this venue. I did get to see the Dallas skyline from afar which was cool, but the only thing that screamed “Texas!” at the airport was the set of taps at the hotel bar. You don’t see Lonestar on tap in New England.

After a few hours spent resting, my dad and I attended the reception in the hotel ballroom. It was a great opportunity to meet some of my fellow patients in advance of the actual conference the following day. I met several new people at my table, which was exciting up until the point where I lost all energy and started to fade. It was going to be a long Sunday, so I resolved to meet everyone else at that time when I surely would have more energy.

My dad and I both fell right asleep….only to get woken up by the craziest thunderstorm I’ve seen and heard in years. The rain (or was it hail?) pounded against the window, with incessant thunder and lightning. My dad slept right through it, but, light sleeper that I am, I was wide awake, irritated and fascinated by the spectacle taking place outside.

Somehow I got up Sunday morning, although I was in a groggy haze. I needed multiple cups of coffee just to be able to form a complete sentence. I was scheduled to speak at 11:30, but happened to step out of the room a few minutes before my talk, and since they were behind in the schedule they switched my time slot with someone else. As a result I didn’t have to speak until the afternoon, which actually worked out great, as it allowed me to a) wake up fully and b) get more comfortable with my surroundings. By the time mid-afternoon rolled around, I had met more of my fellow patients, which meant more familiar faces in the audience.

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Pre-speech game face, or I am asleep with my eyes open.

As I mentioned before, my talk (which you can find here) was part patient journey, part lessons learned. Although I am a perfectionist and can aways find flaws in my presentation, the barometer that truly matters is that of the audience. Gauging from their reaction, my talk resonated with them, which was my sincere hope going in. After my talk, many people came up to me to introduce themselves. They enjoyed what I had to say, which meant a lot since I wanted to help others who were in my shoes.

The conference as a whole was fantastic. The different presentations were informative and relevant to issues I was concerned about, touching on topics related to accessibility, advocacy and empowerment. Most importantly, I made several new friends. I succeeded in meeting a significant portion of the patient attendees at the conference (I’m terrible at estimates but there looked to be around 100 people total who came, including family members), although I was not able to quite meet everyone.

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A few pictures from the ballroom.

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Having this disease is one of the loneliest feelings in the world. Not only is it incredibly rare, but no one in the general population (including family and friends) quite understands what someone with this disease is going through. I don’t mean that in a bitter or resentful way, but the truth is, like other rare diseases, not many people can relate, simply because they don’t have the disease. What made this conference so important to so many patients who attended was that everyone could understand what everyone else was going through. For many who attended, this was the first time they met someone else with dysferlinopathy!

As soon as the conference began, it was over. On Monday we left to return to our respective corners of the country. The flight home was a bit bumpier than the flight down, which meant I was holding on by a thread by the time we landed. Not packing dramamine was a major oversight.

Nausea aside, it was an amazing experience, and I can’t wait for 2017. I hope next year other patients who could not attend can experience the joy of meeting new people without having to explain why you look or move differently. It is a tremendous feeling and an even more tremendous relief.

 

Rare Disease Day

What a day.

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: 

https://www.massbio.org/events/signature-events/rare-disease-day-43537

https://www.facebook.com/media/set/?set=a.10154569351133448.1073741930.377893583447&type=3

 

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.

A Week in North Carolina

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.

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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.

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.

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

 

New York City

I can’t say that I expected to write a blog post so soon about New York City, simply because I had no reason to go. However, things can change quickly. When you are a business school student and you don’t have an internship locked up by this time, and a company offers you an interview, you take it no matter where it may be located. For most people, a quick trip down to New York City would be a no-brainer.

For me? I had to use my brain on this one.

I love New York, and in a different life might already be living there. But I’ve chosen to stay in Boston, mainly because I am familiar with the city and am surrounded by a support system that enables me to maintain a high quality of life. That said, I always think about what it would be like to live in New York.

If things break my way, I may soon find out. Last week I was offered a chance to interview at a company down there that I’m interested in (a company that I’ll leave nameless for now since I am superstitious and haven’t gotten an offer yet). Surprisingly, it wasn’t an immediate yes for me to agree to the interview, as the thought of traveling to and from New York, given my lack of mobility, was a bit frightening on the surface.

In fact, part of me wanted to turn it down right off the bat, which in retrospect would have been a terrible idea. Had I done that, I knew deep down I would have regretted it. After careful thought and weighing the pros and cons, I decided to take the challenge head on. It was an opportunity too good to pass up.

I was in New York City for less than 24 hours, but it felt like a week. I took the trip down after a full day of class, right on the heels of an enormous winter storm (I refuse to call it Juno) that rocked New England. Fortunately, the streets were well-plowed, and I was being reimbursed for my Uber trip, so I didn’t have to dwell on the surge pricing. My trip was also made easier by the fact that I wasn’t going alone – two other classmates were interviewing as well. They helped me with my bags and my suit, so that I never had to carry anything the entire time. Without them I wouldn’t have been able to go!

We took a 5:20 train down to New York. I had never taken the Acela before, and let me say, it is SO much better than the Northeast Regional. It helps when someone else is paying for it, sure, but the convenience, the quiet and the lack of stops is worth the cost. Food? Adult beverages? Yes please.

Once we got to Penn Station, we took a cab to the hotel we were staying at, the UN Millennium located right next to the United Nations. The cabs in the city come fast and furious, and it was easier to hail one than to request an Uber (which is not the case in Boston).

The hotel itself was nice, and the employees were extremely helpful and courteous. I have to say though, from an accessibility standpoint, I was disappointed. There are two towers in the building, the East Tower and West Tower. My classmates were in the West Tower, and I was in the East Tower (or was it the other way around?). In order to get to the tower they were staying in, I had to go up three stairs. That may not seem like much, but when you are in my situation, that might as well be an entire flight of stairs. The other option was to go outside, walk to the other building, and enter there, but I thought that was ridiculous, so I didn’t go over. I didn’t think too much of it. After all, the view outside my room was breathtaking.

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My hotel room view.

The next morning I headed downstairs to meet my classmate for breakfast before our interview. I got to the lobby, walked over to the restaurant, only to see that it was down a staircase. I was astonished.

This building was built in the 1970s, which, although that predates the Americans with Disabilities Act, should mean that everyone can easily access the hotel restaurant. Instead, I had to flag down the concierge and have him lead me the way, which if I recall the steps correctly, was to go up to the 2nd floor, walk through the restaurant kitchen, go down two levels in the service elevator, and exit the kitchen. I felt like I was trespassing. For someone in a wheelchair, it would have been difficult, maybe impossible, to navigate the kitchen.

So yeah, that was a little frustrating. Fortunately, the day more than made up for it. I had a great interview, and a positive experience at the company’s headquarters. People were extremely friendly, and I was given all the assistance I needed to navigate the offices. Fingers crossed I’ll hear some good news this week!

After the interview, I went back to the hotel, changed in my friend’s hotel room (I had to bite the bullet and go up the stairs), then camped out and took a nap on one of the chairs in the hotel lobby. Meanwhile, my classmates decided to be Lewis & Clark and walk up and down the city. When they eventually made it back from their three-hour voyage, we took an Uber to Penn Station (shout out to Sherwyn our driver who was secretly a Pats fan!) and headed to the train. Well, first we had to fight off crowds of crazed travelers. New York walkers have three speeds: fast, faster, and I’m going to run you over. It was 5:15 on a Friday, so it wasn’t surprising that everyone was hustling and bustling. It was an obstacle course not to get trampled on or bumped into, as I would most definitely have gone down. I learned long ago to stay out of the way when in crowds. Somehow, I survived unscathed and on my feet.

We arrived back in Boston around 10:15, and I was home by 11. I was exhausted after a long day. I slept until noon on Saturday (and could have slept all day if I didn’t have midterms to study for next week).

All in all, the trip was worthwhile. I got to leave my Boston shell for a day, and build confidence for the future that I can go somewhere big and relatively unknown and stay standing. If all goes well, maybe I will be back here in the summer.

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The view from my classmate’s hotel room.

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MIT Media Lab

The MIT Media Lab is a place I had wanted to see for many years. Visiting was on my to-do list over winter break, however as I stared at my calendar, it was already January 7th and I hadn’t yet made it across the river. Class would start back up in five days, and once classes started, I knew deep down I probably wouldn’t make it over to Cambridge for quite awhile. If I didn’t go today, I probably wouldn’t go before break ended.

For those not familiar with the Media Lab, it is more or less a giant research lab. According to their website, The MIT Media Lab “goes beyond known boundaries and disciplines, encouraging the most unconventional mixing and matching of seemingly disparate research areas.” It combines the expertise of numerous fields under one roof, ranging from bionics to electrical engineering to computer science. It is truly on the cutting edge of innovation throughout the world. If you could summarize MIT in one building, this would be it.

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Lounge area on the 3rd floor of the Media Lab

Naturally, over the last few years, I had been curious to know if this type of place could create something that could improve my life, in any possible way. There had to be some sort of research going on that could somehow help me. Then one day I got my answer. I had stumbled upon a TED Talk by Hugh Herr, who runs the MIT Biomechatronics Lab on the second floor of the building. A double amputee below the leg, Herr walks around on cutting edge prosthetic legs, and has committed his career to building comfortable, better-performing limbs, in order to make them feel as close to the real thing as possible. Gone are the days of peg legs and immobile titanium rods, that’s for sure.

What captivated me about the talk occurred midway through the presentation, when he showed a quick video sequence of a man testing out an exoskeleton, a machine that could augment the strength of one’s legs. It would be perfect for someone with muscle weakness.

I pressed rewind and watched it again. And again. And again. This is what I needed, I thought. Even better, they were located right in my backyard.

After months of trying to get an “in” – they don’t accept unsolicited requests to tour the lab due to time constraints and the volume of requests – I was connected to a PhD student, Benny, who offered to give me a tour of the lab.

When I got to the Media Lab I walked into a large, open atrium filled with natural light that happened to shine particularly bright that day. I walked over to what I thought was the map of the building, only instead it was a touch screen asking where I wanted to go. This is MIT after all; if the map can’t be interactive and touch-enabled, it doesn’t belong in the lobby. After a few seconds I found where I needed to go and proceeded to the second floor.

I met up with Benny and got a tour of the lab. It was a very interesting visual experience, and definitely not a place for the claustrophobic. There were machines and spare parts everywhere. It was hard to move around without bumping into a wooden plank or a computer or, you know, a gigantic 3D printer. To be fair, they had just combined spaces with another lab and had yet to move everything to its final resting place. Nonetheless, it was an exciting environment to be in.

Benny took me on a tour, showing the history of prosthetics, from hard plastic limbs without any flexibility to customized limbs based on the individual’s particular needs. The 3D printer I bumped into? It was printing a customized sleeve made out of a flexible material that would be placed on a human, then slipped into the prosthetic limb for maximum comfort and performance. It was incredible to see the progress in the field in such a short period of time. Soon, we are going to have prosthetic limbs that perform equivalently to a human’s real limb.

Towards the end of the tour I got a glimpse at the area where they tested out the exoskeleton in the TED Talk video – the reason I had been so interested in the lab in the first place. Going in I didn’t know what to expect, however I secretly hoped that there might be something I could try on. My expectations were quickly tempered – I found out it is still in the rudimentary stages, and unfortunately what they have now is below the knee, which wouldn’t be of help to me. That said, the equipment and resources available to them suggest that they aren’t far from a breakthrough in the coming years.

I left the lab with a greater sense of the time it is going to take before this type of technology can really catch on. It was good to know, but at the same time, it pushes the timeline out that much more before something is developed that can help me with walking. As I’ve reminded myself thousands of times, like a parent scolding a child, I just have to be patient.

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Zig-zagging stairs off the main atrium

 

Besides, I didn’t have much time to let myself sulk, as I had another meeting at 2pm. This meeting was with William Li, a PhD student and lecturer for a class that I participated in as a client in the fall called Principles and Practice of Assistive Technology (PPAT). I had an idea come to me during a stressful apartment hunt last year for a website that showed relevant accessibility information for buildings, so that someone with a disability could easily plan a trip safely and with minimal aggravation.

William and I discussed some follow-ups on how to make this website a reality. I had worked with some MIT computer science undergrads last semester and created a working prototype, however it is far from done. It will take a lot of work to turn it into a living, breathing site, and I am already quite overwhelmed by the demands of the upcoming semester. But it is an idea that I believe is worthwhile, and I refuse to let it die.

Before I knew it the sun was starting to go down after a productive afternoon. As I left the Media Lab, the sun shone its last remaining rays brightly over the atrium. I looked up at the floors above, and marveled at the possibilities of the future being developed all around me. The research that could have a positive impact on my life never happens linearly, and on a selfish level, it never progresses as fast as I would like, whether the research is medicinal or mechanical. But it progresses, at its own pace, each discovery building on the last. With the technology and information available today, research is progressing faster and faster, thanks to innovative, collaborative efforts such as the Media Lab.

The time will come where all this groundbreaking research will positively impact my life. In the meantime, I just have to be patient.

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Atrium as the sun begins to set.