Growing up in Connecticut, I was obsessed with basketball. Everyone in the state disagrees on sports allegiances between Boston and New York, but everyone is obsessed with the Uconn men’s and women’s basketball teams. I watched my first game at age 9 and was hooked.
I’d shoot hoops in the backyard pretending I was my favorite Uconn players. I played on town leagues in middle school and high school. Basketball was always on my mind. I knew I wasn’t good enough to play in college – I was 5’9 and hated playing defense – but it brought me great joy and comfort to play, even if my skills were limited.
I played basketball care-free, because I had full mobility. I could run and jump and dribble and shoot without any limitations. (Leaping was another story). In fact, limitations were not on my radar. Until I was in a car accident my senior year of high school. Then, I realized that I was not invincible. I was not indestructible.
It was because of this accident and the subsequent blood draw that I learned something was wrong inside of me. My creatine kinase, or CK, levels, which should have been only a few hundred, were in the tens of thousands. CK is a biomarker that indicates how much muscle breakdown is taking place in your body. So, a level in the tens of thousands indicated that my muscles were breaking down rapidly and at an alarming scale. But why? After ruling out internal injury, liver problems and other diagnoses, I was diagnosed with a muscle disease I was told would manifest in adulthood, called limb-girdle muscular dystrophy type 2B.
It was a strange, unsettling moment, learning you had a disease before you had symptoms. It didn’t add up with my life experience to date. I had no physical limitations. How were my muscles defective? And given that I was just about to start college, as long as I was asymptomatic, I put it out of my mind. I was 18 at the time. Part of it was denial - I didn’t believe the diagnosis was real.
In the fall of 2004, 11 months after the car accident, I started college at Northeastern University in Boston. It was a city I grew up visiting with my family, and to live here full-time was a thrill. I loved walking around the city. I would often refuse to take the subway and instead walk to and from different destinations, even if they were miles away. I had never lived in a place with so many restaurants, museums, great architecture and people from all walks of life, that I had to see it and experience it. I would hang out with my friends and go to parties and take in as many experiences as possible. I loved the accessibility of Boston, how everything was within walking distance. I wore down many pairs of sneakers walking the city. There was no indication that I had any physical restrictions. There was no indication that I was a ticking time bomb.
But then, after graduation from Northeastern, like a light switch, my symptoms started. I was going for a run one night after work and after a few minutes, my legs began to burn and I could no longer run. The rest of my body was willing to continue but my legs were having none of it. I thought it was odd but I didn’t think much of the root cause. I made excuses in my mind. I was stressed. I was an account maintenance coordinator for a large financial firm and was working long hours. It was boring work and my heart wasn’t in it. I figured I was just tired and run down from hating my job.
Deep down though, I was unsettled. I remembered the words my pediatric neurologist five years back told me – someday I would need to visit an adult muscular dystrophy clinic, and that I would start to experience weakness. Eventually. Could it be that what I expected to take place later in life would happen now?
But then, a few months later, I moved to a new apartment, a two-story walk-up in Brighton, and towards the end of move-in, carrying a desk chair up the stairs, my legs froze up and I couldn’t carry the chair anymore. I placed the chair down and pulled myself up the final two steps with the railing. Something seemed off. I woke up feeling excessively sore and sluggish. The questions in the back of my mind were now front and center. Doubt chipped away at my inner resolve. I knew that the disease was starting. There were too many coincidences for this to be pure chance. I couldn’t use work as an excuse anymore.
In November 2009, I took the advice I received five years ago and followed up with a neurologist at Beth Israel Deaconess Medical Center in Boston who confirmed my diagnosis. I was shocked, even though I knew deep down that I had the disease. For five years, since the accident, I was operating under the false assumption that this disease would hit later in life. To realize that it was happening now, and that it would be severe enough to land me in a wheelchair, was too much to bear. I left that day in a state of shock. I sat down on the bench outside the waiting room, and stared blankly out the window. The late afternoon sun shone brightly into the window. I looked into the sun not caring if it blinded me. I was crushed.
As the years passed, the symptoms progressed. A year later, in 2011, I was walking up the hilly part of Washington Street in Brighton, intending to pick up some toothpaste at CVS. As the ground flattened out at the top of the hill, my right knee spasmed and gave out. I was embarrassed and scared. To collapse under the weight of my own body was an unsettling feeling. In the subsequent few months, falls happened over and over, at home by myself and in public in front of dozens of people. A year after that, I fell on my way home from work and couldn’t pick myself up on my own. I pulled on a nearby fence to get to a standing position, almost causing the wood to break in the process.
I realized I needed an assistive device – crutches and leg braces. I needed something because I could not go on like this falling every other day, and expending all my energy to get up or relying on complete strangers to do so.
That’s when it really hit home. I became depressed and turned down social events, afraid to go somewhere where I might fall in public. I was very sensitive to how I walked, on my heels, and how my gait was slowing down. I noticed that when I got on the bus to go home, I had to hold onto the railing to propel myself up, since taking a step unassisted was getting too difficult. I felt like I was carrying a 30-pound weight everywhere.
The depression – a disinterest in things that used to interest me, fatigue, constant headaches - got worse when I started to notice separation between my friends’ lives and my own. They were getting married, buying houses, getting a dog, eventually having children. I had none of those things, but was consumed by the state of my body. I was on a downward spiral. If I found life to be too difficult, where would that leave me? What was the end game? I struggled to think about it. I struggled to think about anything. Many times I found myself reclining in my desk chair, staring out my window, usually snowing or raining, contemplating life. This wasn’t how I saw my post-collegiate life going.
But I knew, difficult as it was, that this downward spiral either would have a terrible ending, or I would find a way to turn it around. In order to do the latter, however, I had to change my mind and refocus. I thought about my goals, and how they were sitting on the backburner, unfulfilled.
On a snowy Saturday in 2013, I wrote down my goals, and forced myself to find a way to make them work. I realized, although difficult, many of my goals were achievable.
One such goal was to go to business school. I had contemplated business school for many years. Every year I would consider going, but talked myself out of it. I was too weak, I thought. I felt like it was no longer possible. But this time, I forced myself to do it. I took the GMAT exam and scored well enough to get into several Boston-area schools. In 2014, I quit my job and enrolled at Boston College’s fulltime MBA program. It was a huge risk – no income coming in, taking on loads of debt, taking a full slate of classes, moving to a new apartment in a new town. But it was a risk I wanted to take. It was time to see what I was made of.
I attended Boston College from 2014 to 2016. It was a transformative experience. I met dozens of lifelong friends who I continue to talk to to this day. When I started the program, I worried how I would be perceived. Would I make any friends? Would I be prevented from going to social events either because I wasn’t invited or because the venue was inaccessible? Would I be able to handle the rigors of early morning classes, tests, finding an internship, etc.? And if I struggled to make friends, would I quit and drop out?
At first, I thought that answer was yes, that my disease would be a barrier. During orientation, we paired off with the person next to us to practice case interviews. Somehow, I found myself alone. I couldn’t easily get out of the auditorium’s flip chair, so I stayed put, content to practice alone. I felt the isolation of my condition and how different I was.
Then, as if someone was reading my mind, someone plopped down in the seat behind me and stuck out their hand. I turned around, it was a man, about my age, in glasses and a suit without a tie. He saw I was alone and wanted to be my partner. Brian, as it turned out his name was, would become one of my best friends in the program. We continue to stay in touch til this day.
Over the coming weeks and months, I met more and more of my classmates, and felt comfortable opening up to them about my condition. My classmates, once I disclosed bit by bit that I had a progressive neuromuscular disease, were accepting. They looked out for me. They soon would give me rides, carry my backpack, and in several instances, pick me up off the ground after a spill. They became friends. They became family.
School wasn’t bad, either. I learned a lot about business (although never quite mastered accounting), and spent a summer in New York City interning at Pfizer. I never thought I would get to live in New York. I rebuilt a lot of the confidence I had lost over the years, once I saw that I could do something as difficult as business school.
Those two years taught me a lot about myself, and about life. Although my condition has deteriorated significantly, and I am now a full-time wheelchair user, I feel like more is possible than ever before. I like to do public speaking and have given talks and been on panels at several conferences. I have written a blog for the last three years and have been published in several publications. I am writing a book. The job I have now, working for the Muscular Dystrophy Association in a partnership management role, is one that I love. The world is at my fingertips, although it takes more effort, planning, and logistics than before. But all is still possible.
One such example is conferences. In order to attend an industry conference (back when we had in-person conferences), I have to plan out the logistics to a T. I need to find an accessible room that has the right dimensions for my wheelchair and my care. I need to make sure I have help, usually in the form of my parents, to help me. Then there’s getting there, which usually involves a long car trip, and staying at hotels along the route if the location is far. It’s tiring to plan out all the logistics, and even then, there are bumps in the road. But on the other hand, I wouldn’t be going to the conference in the first place if I hadn’t taken this path. It’s a double-edged sword of sorts.
It hasn’t been an easy road. I am still nostalgic for simpler days when I could move around easier, and didn’t have to worry about falling. I miss shooting and dribbling a basketball. I miss spontaneity and going places on a whim. But it has been a learning experience. I take solace in connecting with others who are just starting out on their disease journeys. I have experienced a lot of missteps on my journey that I hope to share with others, so that they may avoid making the same mistakes. How to handle it mentally, how to seek out help, that sort of thing. I hope to share with others that the best way to fight a life-changing disease is to fight it head on, rather than retreat in denial.
Chris Anselmo is a Market Intelligence Manager at the Muscular Dystrophy Association. He is a patient advocate who is passionate about raising awareness for rare diseases, educating healthcare stakeholders on the power of the patient experience, and helping anyone dealing with adversity — especially newly diagnosed patients navigating the ups and downs of a life-changing diagnosis. He lives with Limb-Girdle Muscular Dystrophy type 2B, which has affected him for the last twelve years.