This piece was originally written back in 2016.
“Please don’t ever forget her.”
The quivering voice of Carly’s mother, Irene, echoed loudly in my head.
It was November 2014, and I had just finished giving a speech to my classmates in the Boston College MBA program. The topic of my TED-style talk was my transition from ability to disability over the previous eight years of my life. Classmates were coming up to congratulate me on a job well done, yet I couldn’t shake the fact that, when speaking about my friend Carly and the impact she had on my life, I had forgotten key details of our time together.
Ever since I started business school three months earlier, I had longed for an opportunity to tell my new group of friends about my journey living with Miyoshi Myopathy, a form of muscular dystrophy that had turned my life upside down. I wanted to answer the questions they never asked me, but knew they had. More than anything, I wanted them to know that I was not always disabled, and that I was not ashamed of the person I had become.
In the rehearsals leading up to my talk, I barely mentioned Carly in my story, for fear that I would run over my time allotment. However, in the heat of the moment, in front of an audience of sixty classmates and professors, I realized that I couldn’t tell my story – especially the part about how I was able to turn my life around – without mentioning Carly. To leave her out would be an injustice.
Before I knew it, I was gushing about her bravery and how her cancer battle inspired me to reexamine my attitude toward my own disease. I knew I succeeded in conveying how she made me feel, which at the end of the day is what was important to share. But when it came time to talk about her joyful personality and the many laughs we shared, I blanked on specifics.
I realized that some of the details of our friendship – actual events that took place and conversations we had before she got sick – were starting to fade from my memory. I felt guilty, as if I had abandoned a friend.
I came home from my talk that night, plopped down in my chair, and opened the plastic drawer next to my desk. My old phone – a black iPhone 4s – was sitting in the drawer, collecting dust, a relic of my working years with Carly at Visible Measures. On this phone were the text messages I exchanged with Carly in the brief time our paths crossed in life. I knew that reading the texts would jog my memory of the specific details of our friendship. I knew they would remind me exactly why she made me laugh, even in times when I found laughter to be difficult.
“Please don’t ever forget her.”
I thought back to Carly’s memorial service a year and a half prior in February 2013. That day, as I exited the ballroom where the service took place with my coworkers from Visible Measures, we stopped to give Irene a hug on the way out. She thanked us for being great friends of Carly, and asked us – no, implored us – never to forget about her daughter. At the time the thought of forgetting Carly seemed incomprehensible.
I realized that some of the details of our friendship – actual events that took place and conversations we had before she got sick – were starting to fade in my memory. I felt guilty, as if I had abandoned a friend.
I pressed on the top button to turn on the phone, and then abruptly stopped. I stared nervously at my reflection on the blank screen.
I couldn’t do it.
Maybe I was ashamed that I should have talked to her more towards the end, or that, by reading these messages, she would be gone forever. Whatever the reason, I wasn’t ready.
I put the phone back into my drawer and closed it gently.
“Can you interview our new analyst candidate?”
I turned to my left and saw that my boss, Timna, was looking right at me.
My heart jumped in my chest. I had only been at Visible Measures for two weeks. Not only had I never interviewed anyone before, but I barely had command of my day-to-day responsibilities at the company. My job title said that I was a Campaign Analyst at an online video analytics firm, but what that actually meant, I still hadn’t figured out. I let out a barely audible squeak that resembled a “yes”.
I received the Outlook invite shortly thereafter: Interview with Carly Hughes. I opened her resume attached to the invite. My eyes rolled when I noticed she was a Boston College graduate. I had gotten rejected from BC seven years ago when I was a senior in high school, and I still harbored a significant grudge.
Suddenly, panic welled up inside of me.
What if she asks me what I do?
I mean, I was so new that I was still wearing business casual, not yet grasping that the one person I asked about the dress code was the only person at the company who regularly dressed up. Everyone else was in a t-shirt and jeans.
My boss saw the pained look on my face and reassured me that I would not have to interview the candidate alone. My coworkers, Adam and Colleen, seasoned interviewers, would be joining me. Nonetheless, I was hesitant. I was the quintessential introvert.
The day came for the interview and I was probably the most nervous person in the building. I filed behind Adam and Colleen into the conference room, when up stood a sprightly young woman with golden hair illuminated by the late afternoon sun. She was a bundle of energy, the antithesis of my grumpy and tired persona.
“Hi, my name is Carly!”
I shook her hand and sat down, scanning her resume for the non-Boston College details I had overlooked the previous day.
It didn’t take long for Carly to convince the three of us that she was right for the Campaign Analyst position. She understood the industry, was smart, and clearly had a passion for online video.
The interview was almost over when she looked in my direction and asked me the question I had been dreading.
“So what do you do at the company?”
Oh crap, she’s looking at me. A deer in headlights, I stumbled through an incoherent answer, butchering every detail about the company in the process, much to the amusement of my colleagues. After some awkward laughter, they finally told Carly that I had just started and didn’t really have any responsibility yet. With my answer, it was clear why. After all, I still hadn’t gotten the memo that I didn’t have to dress up. We all shared a laugh at my expense.
After the interview, the three of us deliberated with our boss Timna, and it was clear that Carly would be a great addition to the analyst team. She accepted soon after we gave her the offer, and it was determined that she would start in June, after graduating college and going on a celebratory trip to Europe.
We interviewed several more candidates in the weeks after Carly’s interview for additional analyst positions, but she was far and away the best of the group.
2011 – the year I started at Visible Measures – was a time of transition in my life. I had changed jobs for the fourth time since graduating from Northeastern University in 2008. With the recession in full force, it was a tough economy to find a steady job. I was just happy to be employed and living in Boston.
I was not a good fit at my previous company, a small tech firm that had just been purchased by Thomson Reuters. Although I was an intern there for several years on and off, I was assigned a new manager this time around who I did not get along with. The clash of wills thankfully led me to a company, Visible Measures, with a great culture and generous benefits, including health insurance.
Insurance was especially important to me, because the symptoms of my muscle disease were beginning to impact my everyday life. Although I was diagnosed in 2004 with Miyoshi Myopathy, a type of muscular dystrophy caused by a lack of a protein called dysferlin, I didn’t start experiencing symptoms until four years later.
It is a cruel disease that, for whatever reason, manifests in early adulthood. I started to notice muscle weakness shortly after my 21st birthday, and ever since it has been an unforgiving decline. I have watched in dismay as I’ve lost abilities I once took for granted – running, jumping, climbing stairs – all now impossible, one milestone at a time.
By the time I started at Visible Measures in April, I had become a foreigner in an able-bodied world. I had no playbook, no person to look to for inspiration on how to get through this ordeal. I wouldn’t meet other patients with my disease for another two years, and I was still a year away from writing about my disease for the first time. I had bottled up my pain and frustration, and I was starting to combust.
Throughout college, I had operated under the naïve assumption that my disease would not show itself until later in adulthood. By that point, I thought, with all the medical advances in the world, there would certainly be a cure. That’s how my neurologist spun it, or at the very least, how I interpreted her diagnosis. Either way, my assumption was dead wrong.
I had bottled up my pain and frustration, and I was starting to combust.
Instead, my symptoms began one night in 2008, only a few weeks after graduation, when I went for a run around the Back Bay Fens and my legs tired out prematurely. A few months later, I was moving to a new apartment in Boston and I almost toppled on the staircase carrying my desk chair. Shortly thereafter, I noticed that instead of gaining strength at the gym, I was actually losing strength.
After confirmation from a neurologist that my symptoms were consistent with Miyoshi Myopathy, the unthinkable happened on a cloudless morning in September 2010: my first fall. On that day, my life officially turned upside down for good.
I was walking to CVS on Washington Street in the Brighton neighborhood of Boston with my roommate Pat, when, all of a sudden, my right knee gave out and I stumbled to the ground. The implications of that fall were sobering. No longer could I support my own body weight. No longer could I delude myself into believing that I could manage or ignore this disease.
Falling quickly consumed my life with fear. I worried that each step could lead to the ground, or worse, to an injury. I had read stories of people falling and breaking their leg, never to walk again, and it terrified me. I didn’t want to be one of those people.
Falling was the scariest moment of my life up to that time. Looking back, there were warning signs leading up to the fall. My knee would buckle without warning from time to time, but I would always catch myself before toppling over. I was also starting to struggle going up the stairs to my apartment, relying more and more on the railing for support.
As the falls became more frequent, it became harder to hide the fact that I was now a disabled individual. In a little over three years I had made the unthinkable leap from being a carefree college graduate to being consumed by fear and anxiety over every step.
Up to that point, for a little over a year, I had been living in a two-story walk-up on Fairbanks Street in Brighton, with four of my friends from college. My roommates knew my condition and could see me getting weaker, but we never really spoke about it except when I fell, which was usually in their midst after a night of drinking. At first we joked about me getting weaker, but when it got to the point where they saw me struggling to carry my laundry up the stairs, they understood the seriousness of the situation.
As the falls became more frequent, it became harder to hide the fact that I was now a disabled individual.
I knew at some point I would have to break it to them that I could no longer live in the apartment. Unfortunately, I waited way too long to make the decision, which would cost me later on.
Visible Measures presented a fresh start for my career. My new environment provided the perfect opportunity to distract myself from my circumstances. Every day I was meeting new coworkers, making new friends, and learning new skills. Within a couple months, I was involved in generating reports for clients, and I was busier than ever. I hid my disease from everyone only because I could still hide it. They were unaware of my secret and that I was an emotional roller coaster outside of work.
By the time Carly started in June, I had become more used to my job, and could actually describe what I did to outsiders. The hours were long, but they were fulfilling. I was surrounded by people I thoroughly liked, people who enjoyed going out after work for drinks. I had also perfected the “What do you do here?” pitch simply through repetition – we were rapidly growing and were hiring several new analysts for our team.
When Carly began, we were three desks apart. I was not the analyst responsible for training her on everyday tasks – that was Colleen. However, when Colleen was not around, I was there to answer her questions. We talked a little bit in the first few days but not too much. Nonetheless, she was fun to be around and added immediate energy to our team.
The nature of our job demanded that we work long hours, often doing tedious work that had to be done in order to properly run the Ad Age Viral Video Chart that our technology powered. Our company’s competency was in tracking viewership – total views of a branded video campaign across different websites on the internet. This required putting in long hours and lots of manual analysis.
Nonetheless, she was fun to be around and added immediate energy to our team.
Carly was a couple months behind me on the analyst learning curve, but she was a fast learner. Before I knew it, we were both working on client reporting. The reports were customized to each client’s needs and required hours upon hours of number crunching and presentation-building. Many nights we would stay until 7, 8, 9pm. We would often order food in the office, and could recite the menus of the restaurants nearby from memory.
Soon enough, our desk arrangement in the office changed, and we found ourselves one desk away diagonally. During this pressure-filled time I got to know Carly much better, and as a result, began to appreciate her idiosyncrasies. She loved to walk fast, talk fast, and could drink a large iced coffee faster than anyone I had ever seen.
It’s true. It was an impressive skill.
I remember the moment fondly. It was a late summer day when we decided to take a walk to Dunkin’ Donuts for a coffee break. I bought a medium iced coffee; she bought a large. We were talking on the way back to the office, and when we got into the elevator, I noticed her cup was empty. I stared at her in awe, and a little bit of horror.
“Did you just…?” I motioned to her empty cup.
“Yeah, so?” was her response, as if it was totally normal.
“How is that even possible?”
“How is what possible?”
“How the hell did you drink that in three minutes?”
“Don’t look at me like I’m a freak!”
We both laughed. She loved coffee. Then again, it was probably the source of all her energy. She had boundless energy.
Carly would do things that seemed crazy to anyone else but her. I learned one day that, all throughout college, she would drive home to New Jersey on the weekends when she had to do laundry. She didn’t trust the laundry machines at school, and it gave her an excuse to go home and visit her mom. She would sometimes come into the office on a Monday morning after leaving New Jersey at 5am, iced coffee in hand, telling some larger-than-life story from the previous weekend.
And there were many of those. She would always get into situations where she was with a group of friends and they would get thrown out of the bar by an (allegedly) evil bouncer, or how her friends would play pranks on one another. I distinctly remember her calling me one weekend morning, saying that she fell asleep at her computer and woke up to find her hand in a jar of peanut butter.
“Carly, what kind of friends do you have? They are insane.”
I felt like Jiminy Cricket to her Pinnochio.
By the end of 2011, it had become clear that I had to move.
Quite simply, it was getting too difficult to go up the stairs to my apartment. I was falling every few weeks, and I knew deep down it was because I was tiring myself out. One night when coming home from work, I yanked on the stoop railing so hard for support that I nearly unhinged it.
That September, after much resistance, I broke down and purchased a pair of leg braces. I thought back to Forrest Gump, when the neighborhood boys on bicycles rode by and nailed him the face with a rock, blood dripping down his forehead. For me, that rock was life. Already insecure, it was psychologically humiliating to know that I now had to wear leg braces. But what choice did I have? Without them I’d fall every day.
Technically the braces worked, but they made going up the stairs much tougher. I couldn’t get freedom of movement in my ankles, so I had to take a very deliberate step each time, which made my legs even weaker as my knees had to bear the brunt of the weight. With already shaky knees, this was a scary proposition.
I made one major mistake during this period of time – I renewed my lease. To make matters worse, a friend had moved in who only did so knowing that I would be there.
Unfortunately, the writing was on the wall; I couldn’t live in this apartment anymore. I was huffing and puffing and using all my strength to go up the stairs to my own home. I had already given up doing my own laundry. I couldn’t even make it up to the third floor anymore where my roommates often hung out in our second living room.
The decision to stay or go weighed on my mind. The answer was obvious but the way to go about it was anything but.
I didn’t consult with anyone, as it was a decision I had to make without outside influence. I eventually decided I couldn’t go another day.
Problem was, how do I break it to my roommates?
I knew it would come as a shock, especially since I had willingly renewed the lease only a month prior. The landlord, a middle-aged Greek man who owned half of Oak Square, was an intimidating force, but he was a reasonable guy. I knew I’d have my day of reckoning with him. However, the real problem was going to be telling my roommates.
I had a cast of characters for roommates, all of whom were strong-willed, including my friend who had just moved in. One night, after a few drinks, I found the courage to tell them. They understood the need for me to move out, but wondered why I didn’t leave before September, which was a valid argument for them to make. I told them I thought I could hold out for another year but had badly miscalculated. They were also apprehensive they had to get a new roommate, and really didn’t want some random person from Craigslist.
I had to move – that was non-negotiable, but the terms of the move were up for debate. Before wondering how long I would have to pay rent for two apartments, fate bailed me out. Thankfully, the guy who had moved in learned of a coworker who wanted to move into the city, and he took my place.
The landlord was surprisingly fine with me breaking the lease, as he knew I had a muscle disease and I provided a doctor’s note. It all worked out, but I hated how I left things with my roommates at that time. But we got over it. We were best friends after all.
I ended up finding an apartment right before Christmas with a friend of a friend. The location was right on Massachusetts Avenue in Cambridge, between Central and Harvard Squares. It was on a main street but still far enough away from the hustle and bustle of the two squares to be relatively quiet and cozy. It was a nice area, but it might as well have been a foreign country to me.
From the outset, it didn’t seem like home. I never really hung out in Cambridge when I was in college. None of my friends lived around there. I was only a couple miles from Brighton geographically, but, in the distinctly provincial nature of Boston neighborhoods, it felt like a whole new world.
It was an isolating time. But as Carly would remind me when I was ranting about having to move to Cambridge, she lived right down the street.
I had a friend there after all.
On my first day in Cambridge, Carly made it a point to ride the subway in with me from Central Square. As we stood on the packed train to South Station, we didn’t talk about work – instead we talked about the neighborhood and all the cool places to hang out. I confided in her that I felt lonely in the area, and that even though I had a roommate, I was missing my greater support system of friends.
“Well you have ME,” she said. “We can do things around here. There are lots of great places.”
In the blink of an eye, 2011 became 2012.
Work was busier than ever, thankfully because Visible Measures was doing well at the time, and there was a lot of work to go around on the analyst team. We added new members to our department, growing to a team of five, then six, then seven, in a span of a few short months. Even with the added manpower, we still had to put in long, punishing hours.
In retrospect, I’m sure this period of stress helped contribute to my rapid physical decline, but I don’t regret it. I got to wear many different hats, and saw the fruits of my labor pay off in terms of satisfied customers and repeat client business. From a career standpoint I was succeeding, which was gratifying.
More importantly, in retrospect, this allowed me to spend additional time with Carly. Even under great stress and tight deadlines, we could make each other laugh. She would always get on me for being a sarcastic grump and I would dish it right back at her.
Our busiest time of year was the Super Bowl. Unless you work in advertising or the NFL, this is usually a fun day to get drunk, eat, gamble, and have fun. For us, it meant work, work, work.
It was not an option for an analyst to stay home and enjoy the Super Bowl, simply because there was so much to do. It was the busiest day of the year at Visible Measures. What made it easier to endure was the fact that we were all together and people brought food. Many coworkers came into the office simply because they wanted to join in on the camaraderie or get away from their families. Carly made buffalo chicken dip, which I ate almost by myself within the first twenty minutes of it hitting the table.
Our role on this night was to measure the performance of Super Bowl ads on the internet, add them to our internal system, and track the viewership over time. We had brands that were partnering with us to promote their videos online, which added complexity to our tasks. We stayed up well into the night ensuring that each commercial that aired during the game was in our system so that our technology could track viewership. It was a fast-paced, stressful time, especially considering that the Patriots were in the Super Bowl and lost once again in heartbreaking fashion to the Giants.
I was a stress ball, drenched in sweat by the end of the game. After the final play, I buried my head in my hands in utter disbelief. One of the first people to console me on the Patriots loss was Carly. She didn’t care much about sports, but she could see that I was devastated.
That week after the Super Bowl, we had to stay at the office until very late at night, much later than normal, which was already late to begin with. But it didn’t matter. We were all together, and that’s all we cared about. It was tough work, but we kept things light, and found a way to keep ourselves laughing at all times. We shared funny videos and played pranks on one another when we got tired of working.
One prank stands out above all.
One morning in early March I arrived at my desk, annoyed already by the weather outside, only to see that my desk was completely inverted. That’s right – all my stuff was on the empty desk across from me. My chair, my computer, even my files, were all perfectly opposite of where I had them the night before.
“What the hell?!” I shrieked. The whole office heard me.
I looked over and saw my coworkers stifling laughter. Carly was beside herself. I knew immediately that she was the mastermind.
I was irate at first but I got over it. After all, it was impossible to be mad at her. That’s not to say that she wasn’t going to put everything back exactly as it was before.
“You are helping me fix this.”
I did the best I could to hold my own with the analyst team. Almost all of them were younger than me, and had far more energy to work a full day and stay up late into the night.
Physically, I was beginning to tire out from the constant stress, but I was performing admirably at my job, gaining experience and genuinely enjoying the company of my coworkers. When I’d tell my friends that I worked late yet still liked my job, which often entailed working extra on the weekends, they thought I was nuts. But if you asked any one of us if we enjoyed our job, we’d all say yes, even though it was stressful. It was a great tech company to work at, and the culture was second to none.
Although we had our separate personal lives – Carly had a boyfriend and her own group of friends, and I had my struggles outside of work – we became the best of friends.
I was stressed and scared every day, but I never felt alone, and she was a major reason for that. One morning in February 2012, I finally confided to my coworkers in an email that I had a muscle disease. Too many people were asking why I got a new work computer – a MacBook Air, when everyone else had their old MacBook Pros. They didn’t realize I wasn’t able to carry a heavy laptop anymore. The email was nerve-wracking to write but liberating to send. I could finally be myself and not have people secretly wonder what was wrong with me. Carly had long known by this point, as did a few others, including my boss, but it wasn’t known to the company at large. In fact, she was one of the first people to reach out to me after I sent the email, saying that she supported me, which meant a great deal.
Carly had a way of being there for everyone when we were going through difficult times.
When our fellow analyst Ben got into a car accident and missed a barbecue at our CEO’s house in Newton, she was incredibly shaken. All she could think about was visiting the hospital and making sure that Ben knew that we would take care of his workload that week.
When another analyst, Allison, got sick, fainted, and broke her nose, it was Carly who accompanied her to the hospital, stayed with her through the night, and advocated for treatment when the emergency room was taking too long.
These stories are just the tip of the iceberg. Everyone who knew Carly has a story of how she helped them in some way, selflessly. I can’t think of a better testament to someone’s life.
“The doctor said I should be three inches taller than I am, but my hamstrings are so tight.”
I remember thinking, what an odd thing for someone to say.
Carly had just walked over to her desk with our boss Timna, baffled about her physical therapy appointment that morning in mid-June. A few days prior, Carly had begun experiencing pain in her legs. The physical therapist said that her hamstrings were incredibly tight. I tried to envision Carly three inches taller – that would have put her at almost six feet.
At the time, I didn’t think much of their conversation and went back to work. But it was, looking back, the first warning sign.
A few weeks later, Carly began experiencing more severe cramping and muscle pain. I recalled her previous statement about her hamstrings and began to feel a twinge of panic. Over the next few weeks she went to a series of doctors, who ran all sorts of tests, which came back inconclusive. She was given a tentative diagnosis, but it was clear that it didn’t fit her case. She was advised to continue physical therapy and monitor her symptoms for any changes.
Something didn’t add up, and I was growing concerned.
How she was able to send us an email, I don’t know.
The spring of 2012 had quickly become summer, and the demands of client reporting were on the analyst team in full force. The second quarter of the year had ended June 30th, and numerous reports were due to clients in the next two weeks. Adding to the chaos, our boss Timna was about to go on maternity leave.
Carly, naturally, was the first to know Timna was pregnant, mainly because she had that special sense about her. She loved babies, and always begged people in the office with young children if she could babysit.
Visible Measures started a baby pool in a Google doc on what day Timna would have the baby, along with its gender. In early July Timna gave birth to a son, Liam. Of course it was Carly who guessed the correct day, and that it would be a boy.
A few days before Timna went out on leave, Carly had gone to New York City with a sales rep to visit a client. It was on this trip that her pain became unbearable, and she had to go to the hospital.
Yet, somehow, she was still able to send us an email.
Although we were terrified that she had to be hospitalized, she let us know that she was okay. Doctors were going to run more tests, as clearly it was something more severe than what doctors initially thought. We were happy that she was being treated, but concerned by her level of pain.
I was concerned – none of this was adding up, and it was becoming more worrisome by the day, especially now that she was in the hospital. I worried for her health, and wished that she would get better soon so that she could join us in time for the company summer outing in August. The bi-annual outing was always great fun – employees would fly in from all over the world, we would meet for the day, then go out for drinks downtown.
Before we could get to that point however, the analyst team would have to survive two weeks of reporting chaos. Many client campaigns ended June 30th, and reports were due in the following two weeks. We always guaranteed a two-week delivery time for our reports, as the data was time-sensitive and decisions were made based off of the data. The second quarter was the best our company had ever performed, so it is no exaggeration to say it was the busiest the analyst team had ever been.
I was concerned – none of this was adding up, and it was becoming more worrisome by the day, especially now that she was in the hospital.
Timna had hired two more analysts before going out on leave, but they were not ready to start yet, simply because there was no one to fully train them. Nonetheless, we had to bring them in early to train them on the easy tasks just so they could take some pressure off of us. Any help was essential at that time.
It was mayhem without Timna, as she was best suited to advocate for the analyst team and manage the increasingly urgent requests presented by the sales team. It was also difficult during this time, knowing that Carly was in the hospital for an as-yet-undiagnosed condition. We were on our own.
Reporting and requests piled up. There were nights where I considered sleeping at my desk. One analyst actually did, although he initially denied it. Wearing the same clothes two days in a row was the giveaway, however.
As sales requests tend to go, every request was more urgent than the last, and had to be done at that moment, in order to appease an unruly client.
Other teams saw that we were buckling under the pressure and helped us when they could. Somehow, some way, we made it. We were able to get our work out, on time, with a level of quality that satisfied our clients.
It was a Herculean effort, one that had me in a constant state of stress. It was getting more difficult for me to perform at this level, as I just didn’t have the energy that I used to. I developed heartburn for the first time in my life, which still flares up from time to time when I get stressed.
But we held firm, mainly because we had each other. It would be a time that would reflect well on me when it came time for my review. I got promoted the following year to Senior Analyst – a new role cultivated specifically for the older analysts who had proven their mettle. But I would trade that promotion to have had Carly there with us.
We didn’t hear any updates from her for a few days, until one morning, we received a text message from her out of the blue. They found the source of her pain – blood clots all over her body. She told us she would need to have surgery in the coming weeks.
None of this made any sense. Pain. Blood clots. What was going on with Carly?
By summertime, I had finally gotten used to living in Cambridge, although unfamiliarity was replaced by disdain. I was too far away from everyone I knew, and it wasn’t easy to get to them by public transportation. I wouldn’t learn about Uber for another six months.
During this time, I still walked a lot but it was clearly beginning to tire me out. Just a slight incline was enough to make me winded by the time I got home. Often I’d come home late, taking the subway, and it would be dark out by the time I left the station.
To get from the Central Square T stop to my apartment required a half mile walk up Mass Ave., then a right turn onto Hancock Street, then a quick left onto Centre Street. The average person would not notice the slight gradient, but for me, it was my nemesis.
It was a path I knew like the back of my hand and still can recall to this day, mainly for the wrong reasons. I would walk past a few municipal buildings, past City Hall, then hit a stretch of brick sidewalk before I turned onto the side streets.
By this time I knew the risks of walking to and from my apartment. Taking the bus one stop embarrassed me, however, and it was also getting harder to enter and exit the bus. I knew that asking for the ramp would be a humiliating experience, so I avoided it altogether.
It was a path I knew like the back of my hand and still can recall to this day, mainly for the wrong reasons.
Instead, I walked and took my chances. I would watch my steps, each and every one, since I had fallen before on this very path. Only a few months prior I tumbled in front of City Hall on my way to work, and used all the strength in my body to pick myself up. People stared from across the street, but I was just happy that I was able to get up. I was shaken, but okay.
One night, after a particularly difficult day at work, I got out of the subway, exited the elevator, and walked the familiar path home. It was incredibly dark out that night, darker than usual. I made it up Mass Ave., turned onto Hancock Street then walked underneath a tree.
While avoiding a branch of the tree, I took a bad step on a brick and stumbled. My right knee immediately buckled, and before I knew it I was a crumpled heap on the ground.
I was alone, and worse, there was no obvious way for me to get up. I tried to widen my legs and slowly push myself up, ever so gently, like I had done a few months before in front of City Hall.
Then my right knee buckled again and I collapsed back onto the ground.
I was frustrated, but also terrified. Clearly I had weakened since my last fall. After a few seconds, I transitioned into survival mode. I had to find a way to get back up. I crawled over to a white fence protecting someone’s property. I grasped a hold of the fence, putting my fingers in between each hole, and tried to pull on it for leverage. Unfortunately, it wasn’t securely fastened to the ground, presumably because it was not built for someone to pull themselves up. I failed miserably and landed on my backside once again.
Then came the panic.
Should I yell for help?
Should I call the cops?
Or the fire department?
Desperately calling for help was my worst-case scenario, but it was starting to become my only scenario. I was exhausted from two failed attempts. Panic turned into a full-scale panic attack, and I felt like I was going to throw up. My head became light, my extremities numb.
At that moment, I broke.
After suppressing my frustrations and sadness for four years, I could not hold it in any longer. I began to break down. Tears welled up in my eyes. My heart raced like never before. There was a bush right off the sidewalk. I reasoned that I would crawl over, rest underneath it, and wait for life to pass me by. I did not belong to this world anymore.
I was so incredibly depressed. Worse, I had no prospects for how to get back up.
But something inside me wouldn’t let me quit. It was as if God was shouting down to me, “You aren’t supposed to give up here!”
I took a few deep breaths. The power to continue on did not originate from within, that’s for sure.
I never ended up crawling over to that bush. I stayed on the ground for what seemed like minutes until I regained my composure. My panic subsided, replaced by rational thought. After all, I still had to figure out how I was going to get up.
After catching my breath, I came to the conclusion that I had one more good attempt in me before I would call the fire department. I scanned the area and saw two parked cars near a tree, about ten feet away. I decided I would crawl over and try to use them to prop me up.
Using all the strength I had in my arms, I pushed myself up using the hood of one car and the bumper of the other. I maneuvered myself just enough where I was able to plop myself onto the hood of the car to my left, oblivious to whether or not I was making a dent. I was exhausted to the core.
When I finally got up off the car, I walked gingerly the rest of the way home, holding anything and everything to brace myself. I did not trust my body whatsoever. Worse, I was trembling uncontrollably, my muscles tired from over-exertion.
When I got home I threw myself onto my bed and burst into tears. Emotionally, I was a wreck. This was a new low. I thought life could not get any worse, but as I would soon find out, I was wrong.
“Hey guys!” Carly said to us as we hastily gathered in the conference room.
Only a few minutes before, a calendar invite titled Chat with Carly popped up on my screen. Was this just a time to say hi, or was this something else? I wasn’t sure.
I looked at my fellow analysts, and locked eyes with my coworker Allison. We didn’t have to talk to know that something was wrong. I hoped it was just a time for Carly to say hi, and that she was eager to catch up and show that, although still in the hospital, she was thinking about us and making progress in her rehabilitation. I knew from the limited interactions with her over text and Skype that she was very concerned with how her work was going and regretted that we had to pick up the slack. I, on the other hand, was worried why she still had blood clots.
We settled down into our chairs, with some analysts sitting on the windowsill due to a lack of seating. We waited for Carly to show up on Timna’s computer. Suddenly her face popped up on the screen. From the look of what she was wearing and the pillows behind her head, it appeared that she was still in her hospital bed, which led my heart to sink.
It had been so long since I had seen her face. She looked like she had lost a lot of weight.
“Carly has something to say to you guys,” Timna said. I looked back again at Allison. I began to panic.
Carly started talking, then abruptly stopped. She was choking back tears.
“They found a cancerous tumor in my stomach.”
The room fell silent. All the air escaped out through the open window. My body felt numb. I looked down in front of me; I didn’t want to look up. I couldn’t look up. I knew some of my coworkers were crying and I couldn’t look them in the eye.
A little over a year ago, I was sitting in the exact same seat interviewing an intelligent, energetic college student who called me out for not knowing what my job entailed. And now, a year later, she was telling us that she had cancer.
After breaking the news, it was Carly of all people who tried to cheer us up. She talked about how she was going to fight it and not let it beat her. She knew we were sad but, in typical Carly fashion, she was going to return someday and make up for all the work we covered.
A few more minutes passed of idle conversation, but we were all too devastated to say much on our end. When the Skype call ended we told her we loved her, and wished her the best. Some analysts tried to figure out how quickly they could get down to New York to see her. I wanted to join, but didn’t know how I’d be able to.
A little over a year ago, I was sitting in the exact same seat interviewing an intelligent, energetic college student who called me out for not knowing what my job entailed. And now, a year later, she was telling us that she had cancer.
Slowly we began to file out of the room one by one, some of us returning to our desks, others heading straight to the bathroom to let out emotion.
I walked back to my desk and sat down. I stared blankly at my screen for the rest of the day. The other employees, since it was an open floor plan, looked at us with puzzled expressions. They could tell we were greatly distressed. We weren’t supposed to tell anyone, but at the same time, it was such horrific, devastating news, that it was almost impossible not to.
I couldn’t get out of my head the sound of Carly sobbing. That hurt me the most.
When I got home that night I thought about the situation Carly was in. It was all I could think about. I thought back to the last few months, how she went from muscle tightness, to muscle pain, to blood clots, and now to cancer. Were there warning signs? I wasn’t sure – I didn’t have a medical background. Realistically, no one could have expected cancer from initial muscle pain.
What made this even worse? She received her cancer diagnosis on her birthday, of all days. She had just turned 24 on October 10th. What an awful birthday surprise.
The more I thought about her situation, the angrier I became. I scolded myself for all the times I had let myself feel down about my condition. I almost felt like this was my payback for all my moping. Oh yeah, you think you have it bad? It’s not cancer.
I am my own worst critic. I would have a series of these types of meltdowns in the coming years, moments where I would feel down about myself precisely because I was feeling down about myself. It was a vicious cycle.
I resolved that night to do whatever I could to help Carly. She had helped me so many times, and now it was my turn to help her. She had already shown remarkable courage up to that point, and I knew if anyone could overcome cancer, it was her. The way she loved life, she wasn’t going to let this disease win. I was terrified to think about the end result, and what it could mean. I tried not to let myself go down that road, but it was futile.
I just didn’t have a good feeling about this, you know?
Once Carly’s diagnosis became public, Visible Measures banded together. We all wanted to help her so badly.
Someone suggested a blood drive, since Carly would need several blood transfusions in the coming months, and it was a way that we could give back to others in need. Our talented creative director, Frank, designed t-shirts, with a “Save the Carly’s” logo on the front, comprised of two cartoonish animals – a dog and a cat – on each side of a giant heart. On the back was the date of the drive. Many pictures were taken that day, and afterwards we sent Carly all the pictures of us wearing the t-shirts. She was extremely grateful for the support.
It was an inspiring day, although it was tough to know she was so far away. For those of us in Boston, we did our best to communicate with her via Skype and FaceTime when we could. I texted her from time to time as well, just to see how she was doing, and to let her know I was thinking about her. She was always upbeat. A few analysts had the chance to see her when they went down for business in New York. I envied their ability to see her in person, and begged them to send her my best wishes and a hug.
As the fall dragged on, I was under the impression that no news was good news. Christmas time rolled around, and with it the buildup to our annual holiday party, Festivus. I wasn’t looking forward to it; not because I was a Scrooge, but because I didn’t want to celebrate it without Carly. Just one year ago she was participating in the “Feats of Strength” games and was making jokes about my argyle sweater. But now? She was in a hospital battling cancer. It didn’t seem right.
Fortunately, Christmas arrived early.
We had just re-arranged our desks a couple weeks prior, so my desk, which once faced the hallway leading to the entrance, was now in the corner of the floor. Visitors would sneak up all the time and startle me, sometimes intentionally.
I was working on a data assignment for a client request when, without warning, I heard our admin Erin’s voice.
“Timna, you have a visitor.”
Erin was having trouble suppressing a smile. All of a sudden a figure with blond hair walked up to our desk. Timna let out a shriek; it was Carly!
I couldn’t believe it. She was here! I hadn’t seen her in person in almost six months. She was frail, but she still had her beautiful blond hair, now cut short around the shoulders. She had a bit of a limp but otherwise was her energetic self.
I got up from my desk, and after Timna let go of her, I swooped in and gave her a big hug. I immediately could feel her shoulder blades. My dear friend had lost so much weight, and she didn’t weigh a lot to begin with. Even with my reduced strength I was afraid that if I hugged her too tightly, I would hurt her.
We had a team holiday outing that night and she was able to join us. She told us about how things were going with her treatment. We had so many questions! We learned that she had a new boyfriend, Mike, a friend from her BC days. I was so glad she had someone like Mike at this trying time in her life. She also had a new golden retriever, Linus, a mandate to her parents upon learning of her cancer diagnosis.
Later that night, I learned that she was set to have surgery on her stomach after the New Year to remove the tumor. She lamented how she needed to find a way to gain weight without eating a certain list of foods, some out of necessity, most out of preference. After the surgery, especially since it was on her stomach, she was going to lose a lot more weight. She could tell that I was concerned. I told her I was scared for her, but she reassured me that the surgery would go well.
“They’ll take out the tumor and I’ll get better.”
When she left a few days later, I made sure to give her another long hug. I took nothing for granted about this situation. Cancer is too unpredictable.
Carly had her surgery in January, and from what I could tell from my coworkers who knew her best, it went well. When the analyst team, all nine of us, went out to dinner in the North End in early February, we made it a point to FaceTime with her as we waited for our food. We were dressed up, and passed the phone around the table, saying hi and telling her how we wished she was there with us. She smiled from her bed. She wished she could have been with us too, but was happy we thought to call her.
Just that simple act made her day, but I could tell in her eyes how much it hurt her not to be there.
Any time an email subject is just someone’s name, that is reason enough for concern. I didn’t know what to expect from Timna’s email, but it jolted me awake after nearly dozing in the car. I was driving home with my parents after visiting my aunt. We were having a conversation about something when I decided to absentmindedly check my phone.
I knew right away something was wrong when the email was sent to the whole company.
“I regret to inform you,” Timna’s email began.
No. Please God no.
“…that Carly Hughes has passed away.”
I let out a guttural noise that cut my dad off mid-sentence. My parents were frightened.
“What’s wrong, Chris?”
I handed my mother the phone. I couldn’t say the words. I couldn’t believe the words. It had to be a joke. But why would Timna joke about something like this? Denial set in, followed by the cold, hard reality.
“Oh my God,” my mom said, looking back at me. I took back the phone. Out of duty I read the rest of the message, but I kept coming back to the first sentence.
“Carly Hughes has passed away.”
I didn’t cry. I was too depressed to cry.
Three days later the tears finally came. We attended a memorial service for Carly near her hometown of Haworth, New Jersey. The venue was a hotel ballroom in nearby Tenafly, and it was filled to the brim with mourners. Sorry – celebrators. Carly would refuse to have people show up to mourn her.
Four analysts, myself included, left after work on Tuesday and made the trek down in a rental car. We arrived well after 1am Wednesday morning. I was exhausted but was too emotionally drained to sleep. I might have slept for an hour.
Many of my coworkers made the same drive down the night before, or early the following morning. There were over 25 of us there. It was a morose, sad time, but we were all glad that we were there for each other.
The venue was a hotel ballroom in nearby Tenafly, and it was filled to the brim with mourners. Sorry – celebrators. Carly would refuse to have people show up to mourn her.
The service began at 9 am and was a river of tears from the beginning. It was heartbreaking. How could it not be? It was a celebration of her life – that’s how Carly would have wanted it – but it also was the sad reality that we were saying goodbye to a 24-year old woman whose life was taken far too soon. Friend after friend took the podium and eulogized her. Many broke down, but all showed tremendous courage. If you put me up there at that moment I would have been a shriveled wreck.
I was sitting at a table next to a couple of my coworkers, but kept looking back at the other table, filled with the other analysts and Timna. They were all sobbing uncontrollably. Tissues were passed around, until the box was empty, then another box appeared and made its rounds.
At the end of Carly’s memorial service, we finally found her mother so we could give her our condolences. Irene was surprisingly stoic at that moment, however you could tell that tears had been flowing nonstop for three days. When it was my time to offer condolences, I told her how sorry I was.
I felt so inadequate. What do you tell someone who has lost their only child? Words are useless in such a situation.
After letting go of her hand, Irene addressed all of us gathered in front of her.
“Carly always talked about how she couldn’t wait to get better and go back to Boston and return to work. She loved you guys.”
We nodded in appreciation.
“Please don’t ever forget her.” Irene’s voice trailed off.
Those words have stayed with me to this day.
Eventually, life returned to the monotonous routine of getting up and going to work. For those of us who remained on this Earth, it meant a return to normalcy, if you could call it that. After all, life would never truly be the same. The rest of 2013? I barely remember it. It was all one big blur. I went through the motions, existing more than living.
Although my own disease continued to get worse, my sadness was now because of the void in my life that Carly left behind. I began to see Visible Measures as a burden rather than a place of joy. It was as if, when she passed, the life of the company was lost with her. Employees who had been working there for a while began to leave one by one. The analyst team, so close-knit when she was with us, was beginning to fray. Some went off to other departments, others to new roles that minimized our interaction with one another.
Worse, people joined the company who had no knowledge of who Carly was. Granted, they would find out second-hand but they simply didn’t know her personally. Those who did know her carried that special bond of having known. I found myself looking at people in the hallway and associating them by whether or not they knew Carly. It was a petty way to judge someone, but I couldn’t get it out of my mind. I wanted them to know Carly so badly, and what she meant to all of us. They were genuinely nice people, but there was still that distance that could not be overcome.
Carly’s picture hung on a wall in our hallway. Every time I would pass by I’d look at it. If I didn’t, I feared that I might start to forget her.
By the summer of 2013 I was ready to leave the company, although I would end up sticking it out until the following July. I just couldn’t look at the company the same way without her. It was no fault of Visible Measures and no fault of my coworkers, but it was time for me to move on.
I felt like my life was ready for a change. The question is what would that change be? I didn’t have the heart to search for another job, since I felt like I would be betraying my team.
I remembered back to before I started at Visible Measures, how I had always dreamed of going to business school and getting my MBA. That seed was planted back at Northeastern, when I heard a professor talk about his experience in business school and how much fun it would be. Not to mention how much money you would make coming out.
I always had it in the back of my mind that one day I’d go back. Once my symptoms manifested, I put those plans on the back burner, as I no longer thought I would be able to have a fun experience.
This decision became an existential struggle for me. Do I go or do I not? I decided to wait one more year, but I was going to do it, no ifs, ands or buts, in 2014. In the meantime, I had to get my life in order.
Plus, I had to deal with a new challenge: I needed crutches.
I finally broke down and bought a pair of forearm crutches in April, just days before the Boston Marathon bombing. No longer could I support my own body weight if I fell – that was made clear to me that horrible night in Cambridge the previous August. No longer could I trust my leg braces to keep me upright.
I needed these crutches to get around and there was nothing I could do about it. I could no longer hide my disability to the world.
At first I was embarrassed, as if I should be ashamed for needing them. I tortured myself unnecessarily, seeking out people’s stares so I could justify being mad at the world. It wouldn’t be until much later that I would accept my life on crutches and come to embrace them.
But to get to that level of acceptance I had to endure many dark times. One day in late summer I was sitting outside on a bench, moping per usual, when my mind turned to Carly. I had learned a few months before that when the doctors performed the surgery to remove her stomach tumor, they had to remove her whole stomach once they realized how severe the situation was.
I would also learn that her type of gastric cancer had never been seen in anyone her age. That made me even more devastated, and more perplexed.
I realized that when she talked to me in her final days, she knew that her cancer was Stage IV, and her chances for survival were low. Which means that when we passed around the phone at our team dinner, she smiled while knowing this might be the last time we’d see her. And for me, it was.
I sat on the bench and sulked. I was depressed – depressed at my own challenges, and depressed from missing her.
I realized that if she could see me that day, she would have smacked me upside the head. I could almost hear her chastise me in her voice:
“Chris! You are still alive. You can still breathe the air and feel the warmth of the sun. You can still talk to people, laugh, and enjoy good food. Get a GRIP.”
I knew that if I didn’t change my attitude I wasn’t headed for a smooth landing. I thought back to a time long before I had my disease. When times were tough in my past life, I wrote.
Just the previous year, I had written about my patient story for the Jain Foundation, an organization seeking to cure my specific muscle disease. They were looking for patients to share their stories so that they could convince more people to sign up, as many were reluctant. I remembered how liberating it felt to share my story.
I decided at that moment on the bench to pick up writing again.
A few months after Carly passed, I began blogging for the Muscular Dystrophy Association’s Transitions website, but I didn’t do it consistently. I had written a couple blog posts here and there, but nothing to that point about Carly.
When I got home I started writing a post that would eventually be called “Dreams” (Author’s Note: The link to the blog post is now inactive. I will repost it on Sidewalks and Stairwells in the coming weeks). It wasn’t a post I wanted to write, but knew I had to. It was well-received by my coworkers, but most importantly, it was forwarded to Irene.
That was my goal going in. I wanted her to know what Carly meant to me, especially since I knew she was struggling considerably with losing her daughter. I met her briefly at the memorial service, but she was overwhelmed by well-wishers, so she didn’t have much time to talk. I wanted her to know, above all, that Carly would not be forgotten.
Irene immediately emailed me. I was honored that she liked the post, but didn’t know how to continue the conversation. Fortunately, she asked that we speak on the phone, and a few days later, we talked for over half an hour. It was like I had known her my whole life. I could see where Carly got her friendliness.
Irene and I kept in touch during the fall. Over the next few months, I helped Irene edit her submission to an AARP memoir contest, which gave me an opportunity to learn about Carly’s childhood, and about Irene’s life growing up in New Jersey. It was fascinating to have the chance to peek into their lives, and an even greater honor to help her mom in a tangible way. I was only a small, small part of her grieving, but I felt like I was making a difference.
The more I interacted with Irene, the more I began to come out of my haze. She was helping me just as much as I was helping her.
It was as if by finally opening up, by finally connecting with her mom, I too could move on.
I decided in September 2013 that I was going to apply to business school after all. I was ready. My bosses and coworkers were supportive of my decision, since they could tell I had thought about it for a while and was ready to take the next step. After deciding between several Boston-area schools, I chose to attend Boston College, my former dream school, and Carly’s alma mater. Hey, I can’t hold a grudge forever.
My last day at Visible Measures was July 11, 2014. It was an emotional day. I said goodbye to many friends and coworkers, familiar faces that kept me sane and happy when life tried to throw a wrench in my plans. Most importantly, many of them knew Carly, loved Carly, and were forever changed by her life.
I like to think Carly was proud of my decision. I know when I was choosing a school, she undoubtedly helped tip the scales in BC’s favor. My motivation these last two years has been to find a way to honor her legacy and to make a positive change in people’s lives. If I can turn that desire into a career, I will be happy.
There is still much uncertainty for me ahead, including the possibility of needing a wheelchair, but I am in a much better place. The mental battles were the toughest to overcome, even more so than the physical, but I persevered. I know Carly had a huge hand in that.
Steve Jobs, in his famous commencement speech to Stanford graduates, talked about how you can only see the dots connecting in life by looking backwards, not forwards. Thinking back to my time with Carly, I only knew her for 16 months of my life, from the day she started to the day she passed away. After doing some math I have determined she was only physically present in about 5% of my life.
Yet I felt like I lost a lifelong friend. I was closer to Carly than to many people I have known my entire life, a friendship forged under the pressure of constant deadlines and a quest to make something out of ourselves.
She was there when I was struggling on how to disclose my disease to my company, and she was the first to greet me on my first day as a Cambridge resident. She was there through the ups and the downs of my disease, when I struggled to keep my head afloat.
Simply put, she came into my life when I needed her the most. If the dots hadn’t connected in the exact order, at the exact time, I never would have met her. She straightened my course before I encountered disaster.
I opened my drawer and found my old phone right where I left it a year and a half prior. Only difference now was that it was beneath layers of business school papers. It was three years to the day after her passing, February 17, 2016, and I was finally ready.
I tried to turn the phone on innocently, but after being off for two years, the battery was dead.
Within the abyss of papers was the charger, which I hastily plugged into my computer, and then into my phone. I stared at the empty battery sign and wondered if it was too late. Was the battery dead for good? Had I missed my chance?
If I missed my chance I would have lost my mind.
After 20 minutes, it turned on. The iPhone 4s felt clunky and outdated compared to my iPhone 6 – that’s technology for you – but it worked. Thank God.
I scrolled down the list of text messages. At the top were my business school friends, but, like layers of sediment preserving the different eras of my life, the names of former coworkers began to pop up towards the bottom.
Then I found her. Carly Hughes.
My heart started to race. I clicked on her name before I could talk myself out of it this time.
Our last text was from January 8, 2013. As you can tell by now, I regret not having talked to her more in her final days. I realized, painfully, that to some degree I had taken for granted that she would recover, and truly believed that if anyone could do it, it would be her. I’ve forgiven myself, since – Carly would be the first to tell me – it’s not my fault. It’s not anyone’s fault.
I spent a moment wondering if I should read the texts chronologically, from first to last, or vice versa. I didn’t want the last message I read to be with her in the hospital. I decided to start at the end and work backwards.
Reading these texts was like having a conversation with Carly one more time. I still remember how she made me feel, but the day-to-day details of our conversations were for the most part forgotten. They were the details that eluded me when I gave my talk to my BC classmates.
Scrolling up the screen, I was transported back to our life as friends, long before cancer came and crashed the party for good.
As I read the messages, I felt a sense of relief. It felt good to hear her words, words she actually typed herself, rather than approximate conversations in my mind.
After a few minutes, I reached the last message, long before I was ready. I pressed vainly on the screen, as if a magical portal would open up revealing more messages. I had reached the end – March 5, 2012, when I first purchased the phone.
The last message was about an annoying reporting glitch that we both hated. It seemed abrupt, but then again, here we were, mid-conversation, ranting and joking, back in a time when life was simpler, and the only pain we felt was from laughing too hard.
Undoubtedly, the time in our friendship Carly would have wanted me to remember most.