by Emmett Lyman

I grew up in a small town in central Connecticut with a family that loved the outdoors. In the early years of my development we spent our free time traveling, backpacking, camping, and exploring the world around us.

When I was 13 years old my Boy Scout troop scheduled a day of rock climbing at a nearby cliff, in all honesty just a large glacial erratic boulder in the woods. It was my first time climbing a rock and using rope systems for safety. I was tentative at first, but as I began to climb I realized that it felt natural to me, like something that was pre-destined to be part of my life. I spent the day climbing around on the moderate terrain, certainly not doing anything that would be considered legitimate rock climbing to a serious adventurer, but at the time it felt like the opening chapter of a book that was entirely new to me, and it drew me in.

Seeing a photograph of my young self from that day, I’m now aware of just how easy the challenge was and how utterly silly I looked with poor form, laughable equipment, and little to no inherent skill. But the smile pasted across my face showcased a newfound love of the sport. I still remember the feel of rock touching my fingertips, my shoes edging to support my body weight on small ledges and cracks, and the thrill of weighting the fixed rope as I leaned back to rappel down the rock face for the very first time.

Many years later, my path had turned away from climbing as I’d moved to Boston and prioritized other things like furthering my education and career, fixing cars and motorcycles, and even playing golf, which is a sport about as far away from climbing as you can get. While I was at a posh training program in Miami one day, my best friend Pat called out of the blue and asked if I’d like to take a rock climbing class with him. Little did I realize at the time that he’d stirred a long dormant, but ever-present passion deep within me. Together we became engrossed in climbing and the climbing community, and we both knew it would remain with us for life.

Still, other priorities continued to guide my path. I was pursuing a career in business as I worked diligently to pay off grad school loans, and I moved to Washington DC following a beautiful and brilliant girl that I’d fallen deeply in love with. However, it wasn’t long before I found myself in someone else’s city, abandoned with a shattered heart. I fell into a terrible depression far from friends and family. It’s strange to reflect that now, years later and after a life-changing injury, this loss remains the most painful event of my life.

Pat and other climbing friends from my prior life in Boston desperately supported me across time and distance as loneliness threatened to consume me. One August weekend, two very close friends, a couple named Alissa and John, invited me up to one of our favorite climbing areas in the New York Catskill region. This wasn’t unusual, as we came to this climbing mecca regularly given its similar distance from our two cities. This time, however, they secretly invited Lauren, a girl I’d never met, in hopes that we might connect with each other.

I climbed that weekend with John, and Lauren climbed with Alissa. The cliff extends for miles through the forest with thousands of established climbing routes, so when we bumped into each other at the base of a route that was well away from the more popular areas, it was undoubtedly an orchestrated encounter. Lauren’s eyes caught mine with a shy smile, and I smiled back feeling an immediate spark of attraction. We exchanged pleasantries, and then John and I carried on down the trail. 

Once out of earshot, John nudged me with a grin and asked “She has a great rack, doesn’t she?” The double entendre referred to the rack of climbing equipment that Lauren carried on her harness as she prepared to lead Alissa up their next objective, and it was indeed nice. But the crass and uncharacteristic joke from my strait-laced friend left us both laughing like teenagers.

Lauren and I chatted at length during a group dinner that night, and quickly made plans for a climbing date a couple weeks later. My friends’ gambit worked, and I soon found myself smitten once more, eagerly searching for an avenue to leave my painful memories in Washington for another new beginning in Boston with Lauren. Within a few months I convinced my employer to let me to work remotely, still a rare feat in those pre-pandemic times. It wasn’t long before we were living together surrounded by friends and the climbing community that we both loved so much.

Three years later, Alissa, John, Lauren, and I had grown inseparable and we climbed together all over the world. We decided to plan something new for the warm summer solstice of 2018, and set our sights on an unexplored region of the Alaska Range of mountains. We’d spent years honing our skills in established climbing areas, where guide books describe all the difficulties and solutions to well-trodden routes up rock faces, and in familiar mountain ranges teeming with tourist hikers following trail markers toward known summits and vistas. We felt it was time to take a step into the realm of exploration, a pursuit that is slowly disappearing from the toolbox of many mountaineers as more and more of the world’s finite hidden wilderness areas are explored.

Our plan was to find an inspiring mountain that no person had ever climbed or seen before and establish a new route to the top. A close friend and mentor of ours had built his young climbing career doing expeditions like this throughout Alaska in the 1960s and 70s, and he helped us plan for the inevitable hardships we would face. Following months of preparation, a tiny bush plane dropped us off two at a time on a narrow gravel strip in the middle of an uncharted river deep in the sub-range aptly called the Hidden Mountains of Lake Clark National Park.

We portaged hundreds of pounds of food and equipment through thick groves of alders and underbrush, following the river toward its glacial origin and a line of distant jagged peaks erupting from the earth. After several days of thrashing through unforgiving terrain, we discovered a small glacier ringed by a cirque of stone towers that we surveyed together for promising climbing routes. We settled on our target, a twin-spired peak we dubbed Mt. Sauron.

After hunkering down for two days in camp to wait out unpredictable Alaska storms we awoke to promising weather and gathered up our equipment. We snowshoed across the glacier to the cliff face and began to climb by two different routes, both couples venturing into the unknown. I remember feeling utter euphoria as I quested up through virgin rock with no knowledge of what awaited me above, finding my own way in a manner I’d never done before. I was finally blending the physical challenge of rock climbing with the heightened mental challenge of unlocking a puzzle to find the best solution. It was the happiest day of climbing I ever experienced.

Unfortunately, this is where memory fails me. Sometime late in the day, about two thirds of the way up the cliff, the objective hazard that always looms in the mountains came for me. I was struck by falling rock, either let loose by the sun’s warming rays on frozen terrain far above me or perhaps pulled down by my own negligence as I climbed. We think the rock snapped my head back, slamming my rigid foam helmet into the back of my neck and partially severing my spinal cord at the C6 vertebra. What followed was an extraordinary rescue by my close friends, as well as a unit of elite military parajumpers that navigated a Pave Hawk helicopter at breakneck speed hundreds of miles from Anchorage and through the unfamiliar mountain range.

Several weeks later, I woke from a deep and bizarre dream state that I later learned was an induced coma to find myself in the Intensive Care Unit at Providence Hospital in Anchorage. The rockfall had caused a traumatic brain injury, and the coma was my best chance of avoiding total loss of higher function following brain surgery. Over the ensuing weeks, I was visited almost constantly by my climbing team, Pat and his family, who had flown up from Rhode Island, and many members of my own family from Connecticut and nearby Juneau. They had all rushed to Anchorage when my neurosurgeon advised them to get there as quickly as possible so they could say goodbye. 

I proved to be luckier than he expected and survived to discover a new and different type of life. As the fog gently lifted, it was hard to differentiate between the strange sea of dreams my mind invented to conceal its inability to grapple with the trauma, and the new unfamiliar reality that I was waking to. The sterile intensive care setting, the unknown faces of my medical team, and an unfamiliar detachment between my body and mind left the real world feeling as distant as the dream world I’d been inhabiting for weeks. 

The first two years with a spinal cord injury I felt like a very different person, and at times it seemed as though my very humanity had been stripped away. I felt weak, confused, and entirely dependent on others. Following twelve weeks of rehab at Spaulding Hospital in Boston, where my extensive injuries kept me from making significant progress, Lauren and I moved to an apartment across the street from the facility. I enrolled in an aggressive regimen of outpatient therapy, but still made little progress.

Meanwhile, in my confused state I failed to see the warning signs of a pressure sore developing, and less than a year after my accident found myself bedridden for months preceding and following flap surgery to repair the damage. For Lauren, the emotional trauma of the accident itself and the unrelenting difficulty of having to care for me with painfully little reciprocity weighed heavily, and eventually it broke her spirit. She left in a gloomy cloud of mutual sadness.

It felt like those early years were marked by an endless series of similar scares and setbacks, and it was difficult to see a path forward. Yet there were glimmers of hope. Shortly after recovering from the pressure sore, I got a handcycle and was thrilled to rediscover joy in the exercise, movement, and social engagement it gave me.

Nine months later I took possession of a manual wheelchair, which we’d thought during my stay at Spaulding I’d never be able to operate. I immediately felt comfortable in the new chair, and came to prefer its raw simplicity to the impressive technology of my power chair. It felt more like an extension of my body and offered a more direct connection with my surroundings, similar to the way tight-fitting climbing shoes used to transform intimidating cliffs of stone into inviting playgrounds where I felt most alive. I’m only now starting to appreciate how much that direct connection has always mattered to me.

When the Covid-19 pandemic struck in early 2020, my day-to-day existence was still enabled only by support from caregivers that came in the morning and evening to help with activities I was unable to do for myself. Most important among these were tasks like managing my bowel and bladder, showering, transferring to and from bed, and getting dressed. I had three caregivers on a rotating schedule, but one by one they fell ill and dropped out of service. One morning I got the dreaded phone call from the last remaining caregiver telling me that she didn’t feel well and was not coming to work. I was trapped in bed – a catastrophe I’d hoped would never come.

Terrified, I called my sister in Connecticut and she drove 2½ hours to perform the caregiver role that morning. She then told me flatly that we were going to pack my bags and I was moving in with her and my three nieces for the foreseeable future. At that moment I saw one thing with perfect clarity - my single most important objective was to find a way to live independently without requiring another person to drop everything and care for me. I wanted to make sure I never again felt so exposed and vulnerable.

 Since that morning three years ago, I’ve invested all my effort into reducing my dependence on others. I tell myself that this will mean I can once again play the simple role of friend, brother, or son rather than patient. I’m plagued by the memory of being stuck in bed without the ability to rescue myself, like a formative childhood trauma that haunts me years later.

 My journey has taken me to rehab centers across the country to learn new skills, through medical procedures to simplify my care needs, and into several housing arrangements where I experimented with ideas on how to adapt my environment to my disability. I solved one small challenge at a time, and I’m fortunate that the unique characteristics of my injury have allowed me to achieve real independence and with it the confidence that I won’t again feel trapped or abandoned. The sad irony is that by working so hard to achieve self-reliance and protect myself from being abandoned again, I know that in some ways I’ve pushed away others when they just wanted to help.

 A mental survey of my fellow quads throughout this community leaves me awestruck by how others have managed to emerge from their injuries to lead successful careers, start families and raise children, and give back to the disability community with endless commitment to mentorship and fellowship, all of them ways that I’ve fallen behind. Our injuries force us to be selective in how we invest our time, and zealous pursuit of one goal means profound trade-offs in others. No one can do it all. I wonder how I’ll feel about the path I chose when I look back years from now.

 These five years have also exposed for me a hidden truth about spinal cord injuries. While we’re capable of remarkable adaptation to solve complex challenges, we’re inevitably caught off guard by new and unexpected complications that often prove more difficult than the paralysis itself. In my case it’s a condition called heterotopic ossification. A massive bone structure has grown to encapsulate my hip joint, distorting it in a painful way that reduces my function and disrupts the nearby organs. It’s a poorly understood condition that leaves even knowledgeable clinicians with little to no appreciation for the challenges it has created.

 It’s hard to blame them. There are only subtle indications to an observer that the torque on my skeletal structure twists me violently sideways and prevents me from lifting myself during transfers, that the constant pain emanating from my hip causes intense tone and spasms from my fingertips to my toes, and that the dysfunction of my digestive system due to unwelcome bone constricting it has warped my once healthy diet to a limited palette of liquids and a few heavily processed foods.

 The limitations imposed on my body have meaningfully changed how I live my life, how I view my surroundings, and how I make use of scarce resources like time and energy. Still, I see within myself a familiar spark, the core of a person that remains undamaged and unrestrained by the physical changes around it. I will never again get to climb unknown cliffs in uncharted locations, but the spirit of exploration and adaptation persists, as do my most valued friendships.

 I’m buoyed with confidence gleaned from the successes that I’ve enjoyed over the past several years. I’ve realized that while this disability is restrictive and unforgiving, we can still learn to live our best lives with it. By forcing us to consider what matters most, it can actually help us focus on priorities that we might otherwise have neglected.

 There’s no cure for spinal cord injury and, strictly speaking, there’s no recovery from it. But this is not a terminal condition, and it’s one that can teach us to find new sources of strength and discovery. I hope that I and all my fellow members of the spinal cord injury community continue to look beyond our scares and setbacks, and unlock new routes to climb through this unknown terrain and reach the beautiful summits of our own hidden mountains.

By Brett Swanlund

I’ve always been an active person and someone who likes a challenge. Growing up I played a wide variety of sports, never much of an all-star but always a great role player. Skiing, snowboarding, basketball. One pick-up basketball game in my early thirties, I missed about 6-8 wide open shots or layups. Frustrated with myself, I asked “Damn why can’t I get any shots to fall?! “An opponent, one of the more talented ball players on the court, laughed at me. With a smug, arrogant grin he said ‘’Because you have no ball control”.  I guess that was all I needed to get my head in the game. The next game, I hit every shot I took and scored 12 of my teams 21 points. I promptly left after that because I knew I wasn’t going to top that performance. At the age of 29, I enrolled myself in Shorin-ryu classes.  In a world filled with Hollywood theatrics and impractical styles it was refreshing to find something richly steeped in historical Okinawan karate tradition. Statistics show that 1/100 students reach their first-degree black belt but only 1/1000 reach their second degree. Three years ago, I was just a few months away from my 3rd.

My career started when I decided to leave college after a year and a half at Plymouth State University in NH.  In my youth, I had been told that a college degree is necessary to get ahead in this world, but school wasn’t for me. I wanted to make a living working with my hands. I went to work for a small mom and pop plumbing and heating company, but soon ended up working for the National Grid Gas Company.  It was exciting and meaningful work. I didn’t mind working in single digit temperatures, jack hammering through 3 feet of frost, or the oppressively hot summer days.  There is nothing quite as exhilarating as 60-90 pounds of gas pressure blowing in your face while wearing a fire suit and full-face respirator. I loved being outside everyday all day, busting balls with my crew. My coworkers used to bust me up because on the average summer day I’d sweat so much that I’d go through 3 shirts. They’d say “your wife must hate you with that much laundry.”  My wife always said my laundry would break the washer because my pockets were always filled with dirt and pebbles from working in a trench. I’ll have you know that the washer works just fine to this day. I was about 6 months away from being a crew leader before my accident.  Not everyone out there truly loves their job but I did, and having that taken away from me was a bitter pill to swallow.

At my core, I am a family man. My beautiful wife Jennifer is the strongest, most supportive, and loving partner and I am blessed to navigate this life with her.  I met Jennifer 21 years ago in the dingy basement of my fraternity across the beer pong table. It almost pains me to admit that she beat me, but we’ll chalk that up to the two extra semesters of practice she had on me. This year we will be celebrating our 15th wedding anniversary, but we’ve been together for more than half our lives. We’ve built quite a life together and have two wonderful children Logan who is 11 and Kayla who is 8. 

On June 9th, 2020, life as I knew it changed forever. At the height of the pandemic, I found myself going a bit stir crazy. The only social interaction I had was with my coworkers. My dojo was shut so I spent most afternoons after work running on the treadmill and lifting weights at home. Once spring rolled around a friend suggested I take up mountain biking with him. I really enjoyed it, as it got me outside with people.  On that day in June, I met my friends Zack and Dan after work in my hometown of North Kingstown, RI to hit the mountain biking trails. The ride was enjoyable, and everything was going great, until it wasn’t.  My friends were a bit ahead of me and as I crested a small hill, looking up at them in the distance, suddenly my front tire dropped, and I went over the handlebars. I was pile driven into the ground. I never lost consciousness but as I lay face down in the dirt, I knew instantly that I was gravely injured. I immediately told my friend Zack not to move me. He dug out a little hole under my mouth and gave me water.  My friend Dan called 911 and rode out to a nearby parking lot to meet the paramedics and lead them to me.  The paramedics put me in a neck brace and on a board and carried me through the woods to the ambulance.  Looking up at the green canopy above me, I was less concerned for myself than I was worried that my selfish desire to go mountain biking had put the wellbeing and stability of my household in jeopardy.  My wife immediately ran to the hospital but was not allowed in the ER because of COVID. Finally, a nice nurse snuck her in. I apologized profusely through tears, and in the most loving way possible she basically said shut up and assured me I did nothing wrong. 

My first week in the ICU is a haze because I was heavily sedated. My injury had left me a C8 quadriplegic. I also spilt my C1 vertebrae in half but luckily it did not hit my spinal cord at this level, so they put a bracket around it and fused my neck from C3 to T2. They also performed a tracheotomy because I had trouble breathing on my own and put a feeding tube into my stomach. I vaguely remember the first time I FaceTimed with my wife. I couldn’t talk and could barely move my arms, let alone grip a marker with grip tape to write.  Luckily, one of the nurses was good at lip reading.

Once I left the hospital and went to Spaulding rehab, they pulled the trache and feeding tube and I was able to eat, and more importantly drink on my own. I was also becoming much more functional with my hands which made things much better. Visitors were restricted because of COVID. The hardest part by far was not seeing my children, but once, a few weeks in, I was allowed to visit with them in a conference room. I was still weak, in a power chair, but tears of joy came to me instantly. They both climbed into my lap and hugged me as tight as they could. They told me how much they missed me and how much they loved me and I told them the same. Seeing them gave me bit of motivation to stay strong and keep fighting.  I vowed to persevere and make them proud of me, without them there is no story to tell.

I really hit the jackpot with the staff who were assigned to me at the rehab. The two most impactful were my physical therapist, Gillian, and my occupational therapist, Nicole. I won’t divulge which one dropped me on my head the first week, but I was fine and as she claimed it builds character. At a time when I was extremely isolated, they were the only people I had to talk to and confide in.  We basically laughed through every session. Though of course I had my grumpy and mopey days, they made it fun. Nicole was always the sympathetic ear, assuring me that there was still so much I could do and accomplish, like driving and adaptive sports. At the time, I rolled my eyes and didn’t believe her. She is wise beyond her years. Gillian and I had a lot in common, both being close in age, and our love for 80’s and 90’s music. She was truly my comic relief, usually at her expense. I had several hiccups while at Spaulding, including frequent UTIs and C Diff, but I never missed a session even though these things weakened me greatly. I’m pretty sure one session I completely fell asleep while Nicole was stretching and massaging my hands. 

I always had candy in my room. One day Gillian witnessed me take a handful of skittles and was appalled I didn’t separate them into flavors. This resulted in a weeklong poll amongst patients and hospital staff on how to eat skittles.  I won and Gillian’s punishment was to eat a handful of all the flavors at once, probably one of the most hilarious and dramatic moments in Spaulding history. 

As my discharge date approached, Nicole mentioned to Gillian that I’d be fun to have drinks with. When the day came, we exchanged numbers. A month later, Jennifer and I met Gillian and Nicole for dinner and drinks after and appointment. After that, we started doing monthly FaceTime cocktail hours. I’d update them on what I was doing, they’d help me find resources and we’d just laugh and enjoy each other’s company. For my one-year anniversary, they planned a surprise party with Jennifer. It meant so much to me. When they were leaving, my brother thanked them and commented that it was remarkable how much they cared for their patients. They told him I was the only patient who had ever warranted such an occasion. This revelation turned me into a sobbing mess. I was so happy. They had to be my therapists, but they chose to be my friend and that meant the world to me.

Before I came home, my family worked tirelessly to prepare my house. My mother and friend Barry from college started a GoFundMe to help with the exorbitant costs of making my house accessible. I was truly humbled by the amount of support I received. My parents, wife and brother had my bathroom completely redone, had a ramp installed and many other things to make life easier. My brother and his girlfriend Caroline came to the house all the time to play with the kids and to keep Jenn’s spirits up.

The adjustment to coming home was difficult. My spasticity ramped up and I suffered UTIs frequently. I was also battling with a lot of self-doubt and anxiety over how life was going to be. I worried that there would be no place for me back at work now that I had been stripped of the physical attributes that had helped me build a career. I had crippling anxiety thinking I wouldn’t be able to provide for my family and I worried I would never again have a reason to feel proud or accomplished. Some days, I just wouldn’t get out of bed. Being home alone while the kids were at school and Jenn was working was hard. My thoughts went to dark places, and I often ended up crying by myself.  

But then I started going to SCI Boston zoom meetings and it was a relief. I spent at least the first four meetings in tears. At the very first one, I shared that I was worried about how my kids would perceive me and if they’d be embarrassed by me.  The group assured me that they would become my biggest helpers and would love me even more knowing they could’ve lost me.  They weren’t wrong. Logan leads with his “can do” attitude. Every time I lament not being able to help him physically with sports or karate, he tells me that we will find a way, and we do. And Kayla is my little helper. When we go grocery shopping, she pushes the cart and, because we are both vertically challenged, she climbs up on my lap in the chair to grab items out of reach. My kids never cease to amaze me.  I soon decided that sitting around feeling sorry for myself was counter-productive and that I was going to do everything I could to experience all life has to offer. I decided to show my kids that even though life can be cruel and throw curveballs, it’s how you respond that defines who you are.

I started going to an adaptive gym a well as outpatient physical therapy and worked out multiple times a week, usually getting rides from my parents or friends. This inspired me to begin adaptive driving lessons, so that I could drive myself places and help transport the kids. My father built me a countertop at my height, and I started cooking family meals. Once I got back on the road that March with an adaptive van the fundraisers helped me purchase, I wasn’t going to let anything stop me. While the kids were still in school, I was constantly signing up for adaptive sports with Spaulding. I did everything, tennis, kayaking, cycling, mountain biking, archery and I even discovered there was a way to golf again.

What made all these new experiences more rewarding was having someone in a similar situation to share them with.  A few months after I had been home, I was at physical therapy and a young woman named Faith rolled in. At the time, I was the only wheelchair user in this time slot, so it was nice to see someone else in my situation. At first, we didn’t talk much but one day, while leaving, her casters got caught in a crack at the bottom of the ramp and sent her flying out onto the wet snow. My dad helped her back into her chair. To my surprise, she showed up to the newly injured group two days later. Little did I know that it would result in an unbreakable bond and truly special friendship. We’re separated by approximately 10 vertebrae and a whopping 18 years.  That spring, we both volunteered to work with physical therapy students at the University of Rhode Island. As the only wheelchair users, we were in a room by ourselves joking around and basically competing with one another the whole time.  Our relationship is a bit unconventional because if it weren’t for our paralysis when else would you see an almost forty-year-old man hanging out with a young lady barely into her twenties? But let’s be honest, conventional is boring. We have so much more in common than the chair.  We both love being active and aren’t afraid to try new things, we share the same twisted sense of humor and an uncanny ability read each other’s minds. Whenever we’re in a large group and no matter what the topic of discussion, we just look at each other and know we’re thinking the same thing and laugh.  We’ve done so much together--mountain biking, dozens of golf outings, even wheelchair football.  She even loaned me her smart drive while mine was being repaired. I guess I’m lucky her parents always taught her to take care of the “elderly” as she put it.  Seeing all that she does, being a full-time student and working part-time, really inspired me to pursue my return to the workforce more aggressively. She’s like the little sister I never had, though she never passes up an opportunity to remind me I’m old enough to be her father.

The last leg of my journey has been returning to work.  I’ve had the benefit of working for the National Grid Gas Company for the last 14 years. You may not like their rates, but they are a wonderful company to work for who values the knowledge and experience of their employees. And no, I don’t get a discount.  Finally, after a lot of hard work and persistence, I returned to work on December 1, 2022. This was the thing I had wanted most since my injury, to be able to once again provide for my family and make everyone proud. It’s been a bit of a learning curve going from a trench in the street to a desk in an office, but I’m learning quickly. I also have the benefit of seeing my former coworkers every day.

Going forward, I will always strive to make my family and friends proud of me.  I will never let this chair define who I am. I believe with the right mindset you can find ways to overcome physical limitations. I often reflect on the words of retired Navy Seal David Goggins, who always preaches mind over matter and mental toughness: “It won’t always go your way,” he said. “Don’t focus on what you think you deserve. Take aim on what you are willing to earn”. Simply surviving a hardship allows you to continue but in an impaired state. Recovering from a hardship sends you back to your baseline, meaning no progress has been made. To thrive, you have to learn from that hardship. I’d like to think that I have learned a lot and will continue to learn.

by Milena Kozlowska

One of my earliest memories is awash in the bright fluorescent lights of a preschool classroom, surrounded by bold blocky colors and the smell of Elmer's glue. I sat with my legs crissed-crossed on the colorful squares of the carpet, in the center of a cluster of other students. From her chair in the front of the classroom, my teacher asked me a question.

The details have long since faded from my mind. All I remember is the heat of the other kids' eyes on my neck as I stared ahead, unable to answer. Instead, I shrugged. The teacher prodded me for an answer; the kids around me tittered. Fear cemented my silence. I shrugged again. Frozen, I couldn't speak. Instead, I chewed on my lip, peeling all the skin off.

I never spoke. My teachers grew frustrated with me. I would whisper in the ear of my best friend Talia during recess, but otherwise I stayed silent.

Talia tried to persuade me to talk to her other friends. You can whisper to them too, she said. I shook my head and stared down at the woodchips, hiding behind a curtain of long blonde hair. I could speak to my parents and siblings at home because they already knew me. But around everyone else, my throat closed up. My voice fled.

Silence sheltered me. I built walls around my inner world like a fortress. As if I could escape by making myself as small and still and silent as possible.

In kindergarten, all the kids sat in a circle and the teachers led us in song and dance. I never opened my mouth or moved my hands, just watched the other kids.

After class, I went to the bathroom at my house and climbed up onto the sink. There were multiple mirrors, so I could see dozens of versions of myself spreading beyond me, one after another after another after another. Surrounded by reflections, I went through all the moves we'd learned in class, sang the songs under my breath. All versions of me sang and danced along.

Only in that white-tiled world, with its expansive mirrors stretching infinitely on, could I speak. In the classroom, I could only watch. Silence paralyzed me. Like a princess trapped in a tower, I couldn’t break down the walls of my own fortress. Even when I longed to.

Teachers thought I had a developmental disorder, at first. Then I was diagnosed with selective mutism. My mom took me to see a speech therapist, a woman who sat next to me on the floor with stacks of colorful pictures. As my trust in her slowly grew, I started being able to whisper answers to her questions.

Eventually, I'd been in speech therapy for long enough that I could answer direct questions if prompted. Teachers were no longer frustrated. They liked that I was quiet, polite. I didn't raise my voice or interrupt others or goof off like other kids. I kept my head down and my mouth closed and was praised for it. Meanwhile, I chewed up my lips til they were sore, scratched at my scalp till it bled, clenched my jaw till it ached. Bit my nails down to stubs, then dug them through skin already red and raw with eczema.

On worksheets, I wrote in tiny handwriting, the letters as small as I could make them. As if I was trying to make myself as small as possible, disappear between the pages.

Silence stifled me. I felt like I could scream, and no one would hear behind the walls.

By high school, I was speaking: shy, but no longer clinically so. At my waitressing job, cooks snapped at me for calling out orders too quietly. Whenever he saw me trying to get a cook's attention, one of my coworkers would give me a look of sympathy and ask my order, before shouting it to the kitchen himself. "Thanks," I'd say with an abashed smile.

"Why do you talk like that?" one of the cooks asked me once, in his thick accent. "You always whisper." I'd ordered food for one of the residents, and he was piling the mushy vegetables onto a plate.

"This is just my voice," I said as he handed me the plate.

"No, it isn't."

I laughed nervously and left to serve the food. Heat flared somewhere in the back of my throat. I'm not whispering. This is my voice.

What if it wasn't? What if my real voice was still stuck somewhere I couldn't reach it? What if I'd buried it somewhere in the wood chips of my preschool playground and it was gone forever?

Still, I liked some things about being quiet. I liked that people told me things they wouldn't tell others, that people called me a good listener, that most of my life was hidden, that I could keep a little mystery, a little distance. Silence protected me, both as my weapon and my refuge. Behind its walls, I could observe others without being seen, or known.

But when I started college, I wanted to be someone else. I wanted to leave the mute girl behind, somewhere on the outskirts of a school playground with her knees drawn to her chest. I tried to outgrow her, outrun her, in a new place where no one would start off already knowing me as the quiet girl. I joined rugby, a sport where I had to shout at the top of my lungs. I raised my hand in classes. I placed myself in social situations as often as possible, surrounded myself with people. I shaved my head so that I couldn't hide behind my hair anymore, even if I tried.

And yet. And yet. People still kept asking me to repeat myself, became frustrated with my voice. I'm sorry, I said, over and over again. I know I'm a little soft-spoken. No matter how often I tried to raise my voice, that never seemed to change.

Silence found me, again and again and again. I tried to knock down the stone walls that wrapped around my vocal cords, but I could only ever break away parts of them. The rest crumbled into rocks in my throat: I could speak, but it was never easy. It loosened its hold in me, but I could never escape it completely.

And yet. At one time, silence kept me safe. In some ways, it still does. It has been with me so long, I don’t know who I’d be without it.

It’s a part of me— for better or worse.

Milena is a third-year student at Northeastern University majoring in behavioral neuroscience. In her free time, she enjoys painting, reading, writing, and playing rugby.

I am 16 years old, desperately clinging on to the last few weeks of summer before my junior year of high school. The days are long and sticky with humidity, and I mostly spend them sequestered in my room, lulled into midday naps by the hum of air conditioning. In the past few years, I’ve sunk deep into the comforts of my room, only emerging to run and catch the bus each morning. There I am alone, and maybe that’s preferable to being with you.

I don’t go out with you and your friends anymore. Not to eat ice cream from the shop in town or sit in someone’s basement and drink. Each time you do see me you urge me to come out sometime. You say I would be less depressed if I did. I want so badly for you to be right. 

My phone lights up, and I flinch when I see your name. When I was younger (much younger), the sight might have been a welcome one, but not anymore. By this point I know what you are capable of. This night’s incident would not be the first, nor the last. 

You want to meet for dinner. I stare blankly at the time. It’s 10:00 pm. I ate hours ago, and I tell you so, but you just got off work and you’re hungry. I type out a resounding no thanks, see you when school starts, but I hesitate. Maybe you’re right. Maybe if I go out I’ll be happier. I’m so desperate to lessen the heavy weight that sits on my chest each day that it outweighs the trepidation I feel towards you. So I tell you I’m not hungry, but I’ll keep you company. You say we can go to the pizza place around the corner. 

I scurry out of my house, meeting you halfway up the street. I don’t want you coming to my house, even just to stand on the porch. Something about your presence on my doorstep would feel like a stain, a contamination. I don’t want my parents seeing you either. Irrationally, I worry they could look in your eyes and see what you’ve done. 

As we begin to walk you tell me you have no money. That strikes me as strange, seeing as you’re the one who wanted dinner. But I say nothing. My ability to question, to protest, has mysteriously evaporated. As we near the pizza place, I see the windows are dark, the chairs placed upside down on the tables. They’re closed, and they have been for a while. That seems odd, too, seeing as you must have walked by on your way to meet me. You barely even spare it a glance, walking straight past. You suggest we go to the park. My legs betray the dread that’s made a home in my body and I follow dutifully. That's what we’re supposed to do, right? Be compliant? But the tiny grains of unease prick at the nape of my neck, urging me to turn around. I suppose those were my instincts, which I excel at ignoring. So I agree, because that’s what I’m good at. 

Our town is dark and deserted, so I shouldn’t be surprised when the park is too. The sole inhabitant is a man crouched low on a bench, fumbling with a cigarette. He asks you for a light but you have none, so you apologize as we descend into the playground. I haven’t been here since I was a little kid. It’s different now. They’ve updated the equipment, the plastic slides bright and shiny, even in the darkness. You take off your apron and fold it neatly on a swing. You’ve been washing dishes all day. You start to tell me a story as I stand there, my feet shuffling in the wood chips. 

You were texting your friend at work all day talking about how horny you were. How all you wanted was a blowjob. He said he could hook you up with someone but you said no. I don’t know how I’m supposed to respond to this, but a cool girl wouldn’t bat an eye at this kind of talk, so I say nothing, the ghostly light of the street lamps illuminating your face. You keep peeking at me, gauging my expression. This feels like a test so I try to look as nonchalant as possible. I don’t think it works, and you look away again. Then you’re fumbling with your belt, and the metal of the buckle is like wind chimes but also fills me with dread. You apologize, that same genuinely sorry tone you used when you didn’t have a lighter for that man, but you just have to take a piss. I stare anywhere but at you as you piss against some poor tree. Then I go and sit at the top of the slide, wondering why you would do that. Now I know you wanted an excuse to take your dick out. 

You clamber up the slide to sit near me, our legs touching. I feel a sense of real revulsion. And then I see you didn’t put it away, and that image burns into my brain like hot metal on flesh. You’re still talking because that’s what you know how to do best, and the seal on my mouth breaks open, the words tumbling out like water: my dad wants me home i need to go home he’s texting me i have to leave i’m sorry—

But you’re calm, like you expected this resistance, and you insist that we have plenty of time. There’s enough time (for what?) before I have to leave. You lay across my lap, and my back reflexively presses against the bars until it’s painful. I’m a statue made of stone and you are the bird shit that covers it. You tell me to guide my hand towards it but I don’t want to and I don’t know how to and even if I wanted to say that I couldn’t anyway. A list of excuses tumbles out of my mouth and you deflect each one deftly like a star athlete. My heart is pounding so hard I feel like you must be able to hear it, you’re so close to me. I stare down at you, trying to focus on your face instead of everything else, and childishly, I wonder if you will kiss me. Not because I want you to, but because some part of me wants to be the object of someone’s boyhood crush. I wanted a single rose because a dozen was too expensive and cheap chocolates from the grocery store and a tacky heart shaped necklace from the mall. This is not how high school relationships are supposed to happen. I don’t even like you in that way, but you seem to want me and I wish someone would but not like this. 

I make a final plea, I need to leave, and you press your full body weight into my lap, murmuring, you can’t leave if I do this. Fruitlessly, I try to stand up, but your weight impedes me completely. I can’t get up, as much as I try, struggling with the effort. I resign myself to my fate, the task ahead of me that you’ve assigned, but I’m paralyzed. I stare back blankly as you look up at me, expectation clear in your eyes. Finally you sigh, annoyed, buckling your pants back up and standing. I scramble up, murmuring apologies (for what?) and jumping back down into the wood chips, my knees smarting in pain at the rough landing. You say you’ll walk me home because it’s late, which I find ironic, because who do I need to be protected from but you? 

Of course, I acquiesce, and we walk together, the silence heavy. My mind is blank. I just want to be alone again. Alone can be lonely but it doesn’t hurt me like you do. You pluck a leaf from a nearby plant, your fingers punching holes in its veiny surface like two eyes. As we reach my street you hand it to me wordlessly, telling me you’ll see me at school in a few weeks. You walk away, hands shoved deep in your pockets, and the fluorescent glow of the streetlamps makes the world look like a movie set at nighttime turned artificially into day.

I twist the leaf in my hands and walk the rest of the way home alone. My parents are sitting in the living room like always. I walk straight up the stairs silently, taking out my diary and sitting on my bed. I don’t remember what I wrote, but afterwards I took that leaf and pasted it into the pages. I wonder if it’s brown and crumbling now, or if the scotch tape has kept it intact, green and smooth, chlorophyll staining the pages and the tips of my fingers. 

Lily is a fourth-year student at Northeastern University studying Biology and English. Her writing has been published in Spectrum Literary Arts Magazine, Queen City Writers, and The Foundationalist. She hopes to pursue medical school after college and continue writing as much as she can.

By Charissa Rigano

Multiple Sclerosis (MS) is partly caused by genes you inherit from your parents, and partly by outside factors that may trigger the condition. Experts assert that MS is not directly inherited, but it is agreed that the condition is more likely in people who are related to someone who has it -- for example, the chance of a sibling or child of someone with MS also developing it is estimated by the National Health Service to be around 2 or 3 in 100. I am not sure what this really means…but here’s my story.

1995

Returned home from my honeymoon.

Loss of feeling in my right hand and arm.

Checked into George Washington Hospital being treated by a neurologist.

FAMILY HISTORY.

MRI.

Lumbar puncture.

Steroids. 

US Open tennis on TV.

I know what the doctors are going to say since my father Richard Rigano (1940-1992) died in a nursing home in Massachusetts from MS in 1992 before he ever met my now husband. 

I was Daddy’s little girl who had lived my life watching my father ravaged by this un-curable disease -- how do I handle the same diagnosis?

I chose to mostly ignore the MS diagnosis and continue to live my life.

Continued to see my neurologist every 6 months. Took ‘MS' medication when we could get the insurance company to cover the cost. Although these medications are FDA-approved, for all intents and purposes they are being tested on MS patients. I say this because nothing cures the disease, and each patient is so different (with symptoms and disease progression) that there is no one drug that has been shown to change the disease progression.

In retrospect, I am forever grateful to the doctors who encouraged me to try these medications as my health may have been dramatically different if I had resisted the pharmaceuticals. 

Life moves on.

2000

First child, a daughter born February.

2005

Adopted second daughter, born December 2003.

Busy raising children and loving my family.

2008

Completed sprint triathlon (0.5 mile swim, 20k bike, and 5k run) to celebrate my 40th birthday.

2018

Major life changes including: oldest daughter graduated from high school and left for college, and death of my chosen mother figure – the mother of my heart - by suicide. In hindsight, I realize that these stressful life changes including losing my best friend affected my health.  

Noticed issues walking, including left foot drop and inability to walk as far as I could in the past.

Tried many different things. Changed my diet including eliminating inflammatory foods (dairy and gluten). After many unsuccessful physical therapists (PT), I realized that patients with MS need a knowledgeable PT, and I found an amazing MS-specific PT.

I can no longer ignore my MS, as it is affecting my life. I must take action.

My neurologist spoke of my disease as ‘secondary progressive’ during my next appointment.  I looked him straight in the eye and said, “If you ever say that again I will walk out and never return.” A bit dramatic, but I am Sicilian, and visions of my father flooded my memory at the use of ‘progressive’ because SPMS (secondary progressive MS) is what my father had that caused him to end up in a nursing home begging us to end his life.  It is a type of MS that comes after relapsing remitting MS, and your disability gets worse and worse without periods of remission. When my doctor suggested that my disease was moving to SPMS, memories of my father and his final days paralyzed in the nursing home bed, begging us to end it all, came flooding back. 

After reconnecting with a friend from high school who also has MS, I learned about her experience with Hematopoietic Stem Cell Transplant (HSCT) which halted her MS. After doing my own research, I went to Puebla Mexico and had HSCT in December 2020. My friend from high school, let's call her Kristen, is a very kind person who always told me of the fond memories she had of my father.  Although we fell out of touch after touch after high school, I knew that she had MS.  For years I toyed with the idea of contacting her, but never did.  When my physical condition deteriorated, I finally got the guts to call her and she shared her journey with me.

2022

I remember what life with my chronically ill father was like, and how he spent his last days in a nursing home begging for us to end his life. This experience was neither good nor bad, just how life unfolded. It drives me to never stop loving and taking care of myself, even when I am exhausted.

I am now 19 months post-HSCT, and although I have lingering doubts at times about the effectiveness of the treatment and my health -- like when I caught Covid-19 after 2.5 years of avoiding it, and getting Lyme after a tick bite -- I remember that I am human and have to be cautious and patient when I get sick.  

Biggest findings from this time:

Recovery from HSCT is no joke.

I must manage my stress and my diet.

I have to keep my body moving (“if you don’t use it you’ll lose it”).

Living with a chronic illness includes being flexible.  

Be thankful for my friends.

I believe that I have halted the progression of MS, but I continue to live with pre-HSCT myelin damage. My current mission is believing that I can do whatever I put my mind to, and am not limited by doubts and chronic illness. How do I manage my chronic illness? By having a positive attitude, moving my body every day, and not letting fear win.  I am constantly working on getting over my fear of entering new situations, but hope that as I progress on my journey this will get more natural and easier.

Charissa Rigano is an engineer, educator, yoga devotee, health nut and woman living with a usually invisible chronic illness.  Her latest challenge is learning how to live with this chronic illness and the grief around losing the woman she used to be. She currently lives in Andover, Massachusetts with her husband and 2 dogs while her two daughters are spreading their wings at university and “the real world”.