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.

IMG_0195
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.

photo 1
The view before the storm
photo 2
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.

photo (4)
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.

photo (2)
The view from my classmate’s hotel room.

photo photo (3) photo (1)

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.

photo 1
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.

photo 4
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.

photo 2
Atrium as the sun begins to set.

 

Trident Booksellers

logo

I hadn’t been to Newbury Street in a couple years, except when someone has made the fateful decision to drive down it. Between jaywalkers who don’t look up at approaching traffic, double-parked cars, and police activity, it is impossible to go more than a few blocks in 15-20 minutes. For the most part, Newbury Street contains everything I’m trying to avoid: crowds of people wandering aimlessly (*cough* tourists), brick sidewalks, and buildings with stoops.  Don’t get me wrong, it is a gorgeous street, especially around the holidays. However, I’ve been down this street countless times since I’ve lived in Boston, so I at least know the area and don’t feel too nostalgic missing out on it. That said, part of what I’m trying to do now is to re-introduce myself to areas that I’ve subconsciously sworn off since my disease decreased my mobility. I don’t go out nearly as much as I used to, but I am committed to changing this, as long as it takes. Blogging gives me the fun excuse I need.

Since winter break has just started, I figured this was as good a time as any to change my hermetic habits. Newbury Street, in all its hustle and bustle and annoyance, would be quite a challenge off the bat. But, like MacArthur returning to the Philippines, I returned triumphantly.

My destination was Trident Booksellers, tucked between Mass Ave. and Hereford Street. It was a place I had been meaning to go to for a while, a famous bookstore/cafe that combines three things I love: books, food, and MBTA memorabilia. I had never been inside, so I had this preconceived notion that it would be this quaint little bookstore with a side cafe, where people sipped lattes quietly while perusing the internet on their Macbooks.

I was wrong. Well, I was right about people on their Macbooks, but it wasn’t the quiet, quaint store that I thought.

Mirroring the gift-seeking, meandering crowds of people outside, it was actually a lot busier than I expected. It took a few minutes to get comfortable with my surroundings, as the store was arranged in a haphazard manner, with the checkout counter, cafe, and aisles of books all converging in one spot when I walked in. This setup made for foot traffic going in every direction, which, for someone who needs to be careful with each step I take, was a bit harrowing. But hey, I could actually go in the store, which I can’t say for most old buildings unfortunately. Trident does have a second floor which has a long, winding staircase to access, and as you can imagine I did not go up there. So yes, this is really only a half a review. I have no clue what is up there, so I apologize. Everything I needed though was on the first floor.

Today I met my friends Mike and Claudia for brunch. The Trident menu is quite expansive, encompassing both breakfast and lunch. When given the choice between the two I always opt for breakfast, specifically french toast. You can tell a lot about a restaurant by how their french toast tastes – what type of bread they use, the toppings offered, even the quality of their bacon on the side. Although I opted against bacon today (come to think of it, I’m not sure why), the french toast was on challah bread, and came with a side of strawberries and whipped cream. It was fantastic. Looking at what other people got around me, you really can’t go wrong with what you order here. The portions are generous and the food is hearty. The main dining area was a bit cramped, but at no point did I feel uncomfortable that I couldn’t get by the other tables okay on my crutches.

Afterwards, jittery from far more coffee than I probably should have consumed, I walked around the store. Since I didn’t bring a backpack I couldn’t purchase anything that I had to carry with my hands, which is actually a great strategy to save money. Otherwise, I tend to want to buy everything I can reasonably lug in my backpack.

Overall it was a great experience and I’d go back again. It was a little busier than I am comfortable with (from a pure safety perspective), however I was there during peak business hours – a Saturday afternoon right before Christmas. Accessibility-wise I’d say it is adequate, especially for Newbury Street which has a lot of old buildings I can’t get into. As I’ve learned rudely over the years, older buildings do not have to abide by accessibility standards outlined in the Americans with Disabilities Act. Yay human rights!

In all seriousness, I have to focus on the places I can go. The more places I find around the city that are accessible, the more inclined I will be to get out of my neighborhood, which at the end of the day is the important goal. So far, so good.

By the way, I can’t think of Trident and not think of Anchorman!