As I sat on the kitchen floor holding the bottle of pills, my cat Sierra came over for some attention. I set the bottle down and held her, crying. A few days later, still feeling emotionally vulnerable, I determined the exact day I would end my life. I was in 6th grade.

I was adopted from Guatemala at 8 months old and have always felt a sense of abandonment and struggled to recognize my self-worth. My single mother worked hard at her job and found good care for me when she had to work. I loved my daycare, but every day when my mom dropped me off, I worried that she wouldn’t come back. When I got older and was allowed to stay home alone after school, I felt overwhelmed with anxiety and anger if my mom didn’t answer her phone right away when I called. By the time I reached her, I would scream at her, throw things, or stab the walls with scissors. Once, I picked up a small (but not light!) cat perch and threw it against the wall. The hole remains today, a reminder of angrier times and also as a cause for occasional humor as we see our solution to the damage - placing a wall sticker that says “Peace” to cover the spot.

I was always aware that I was different from my mother and my many relatives. They were white while I was Latina. There were very few Hispanic children in my elementary school, and I was sometimes singled out with cruel comments. “Why does your skin look like dirt?” These comments hurt, and while my mom was angry on my behalf, I sensed that she couldn’t really understand how these comments made me feel.

Then I was diagnosed with learning disabilities. Now, in addition to feeling ugly, I felt stupid.  I dreaded the days when I went to the learning center, embarrassed by being pulled out of class. I hated feeling different and struggled to manage my anger.

You might think I had a tough home life, but that was not the case. I have a loving mother and extended family, a nice house, attended good schools and had many friends. My grandparents were very important to me, especially my Papa. We always had a unique connection. He made me feel loved unconditionally. One of my favorite memories of my Papa was when we were visiting my grandparents in Florida when I was a little girl. I was in the pool, and wanted someone to come in with me, so Papa dove in. He was a chubby man, and the dive created huge waves. I thought it was so funny! He called me “Princess” and made me feel like family and he had total confidence in me. He would tell my mother that adopting me was the best thing that she ever did. 

My Papa’s death when I was in fourth grade was devastating and left me feeling sad and empty. Sometimes, I wanted to be with him in heaven, to end the emotional turmoil in my head. 

By sixth grade, life felt so hopeless that I decided the only solution was suicide.

One of my classmates told my guidance counselor that she was worried about me and I admitted that I had a plan to end my life. My mom took me to the emergency room at Children’s Hospital. It was a long afternoon and evening. I answered questions from nurses about what had happened, whether I used drugs or drank alcohol, whether I felt safe at home. I answered the same questions for a doctor who was checking my physical symptoms. I waited and waited to provide them with a urine sample (many cups of apple juice later I was finally ready, but needed my mom to hold the cup for me - we still laugh about me peeing all over her hand). Then I waited some more for a psychiatrist to come talk with me. I talked a bit about how I was feeling, about my grief over my Papa’s death, about how I felt like I didn’t quite belong anywhere, but after many hours, the psychiatrist and my mom decided I was safe to go home.

I wasn’t. A week later, I told my therapist I was hearing voices in my head telling me to end my life, and I ended up back in the emergency room. This time, I was more honest about my feelings and the depth of my hopelessness. I was admitted to an inpatient, locked psych unit. 

I spent the first night on a mattress on the floor, trying to sleep without much success. The next day, my mom came to visit. We spent several hours in a run-down visiting room surrounded by toys and books for younger kids. I cried and begged to go home. We talked about why it was best for me to stay until I could feel safe, and I eventually calmed down. We laughed about silly things, and I was allowed to use my phone so I could text a couple of my friends. 

I remember feeling sad and homesick. I remember feeling bored, I remember resenting some of the restrictions I thought were stupid (all of the strings had to be removed from my hoodies – because apparently strings are dangerous). I also remember the good things. I knew that I was safe, that I could not harm myself. My mother was able to visit every day. 

I was discharged after a week. I was not ready to just jump back into classes and homework and friendships. One night, I again told my mother that I did not see any reason to stay alive. There just seemed like no way that I would ever feel anything but miserable. It wasn’t until my mother said, “If you end your life, I would have to end mine too so that we could be together,” that I started to realize that my life had value. I had felt like I was the only one experiencing intense pain, but I had been blind to my mother’s experience of watching me deteriorate in front of her eyes.

My suicidal impulses faded but I still struggled. I hated school and by halfway through 8th grade I had missed almost 50 days and was planning to drop out. There were efforts to connect me with different counselors at school, to allow me to eat lunch with a staff member rather than in the cafeteria, to let my therapist meet with me at school, but none of this made enough of a difference.

The district finally agreed to let me transfer to a therapeutic school, the Walker Beacon School. As soon as I walked into my new 8th grade class of four students, I knew this would be a much better place for me. The entire staff was trained to help. I was permitted to leave class any time I was overwhelmed and needed a break. One of the counselors would go for a walk with me or sit and let me vent until I was calm enough to go back to class. I met with my clinician several times a week and I knew she had my back (even after I threw a glass jar at her in a fit of anger). My new friends were not put off by my bursts of anger because they were also learning to regulate their emotions. Things were still difficult, but I felt that everyone around me was there to help rather than judge.

Even more important in changing the direction of my life was meeting my new therapist, Jamie. I remember sitting in the waiting room when this beautiful Black woman walked in, dressed in comfortable, colorful clothing. She walked right up, smiled, and shook my hand. I felt her warmth and her humor, and I suspected she would not be disturbed if a few swear words came out of my mouth. As we followed Jamie up a set of stairs I turned back to my mom and gave her thumbs up. This one was going to work out. 

With Jamie, there was no judgment, just understanding. I was finally allowed to express my true feelings - the deeply felt fear of abandonment, my dark moods, my suicidal thoughts and self-destructive behavior, my feelings of inadequacy due to my learning disabilities. Jamie helped me realize that I needed to stop running away from my problems and instead talk about them. She helped me realize there was a brighter future for me, one that I could manage on my own using my inner strength. It was so helpful to have someone (besides my mother, because mothers always say those kinds of things) tell me that I was smart and strong and capable. I learned to see those things in myself. This therapist saved my life. 

With time, I found increased self-acceptance. Instead of wishing I looked like my White friends with their pale skin and straight hair, I began to love being Latina. I stopped spending hours straightening my hair and let my natural curls show. I also learned to seek out friends who could accept me for me, moodiness and all. I started to understand that my birth mother’s decision to place me for adoption may have been a gesture of love, not abandonment.

Feeling stronger and more confident about myself made me more aware of times when friends and classmates were struggling. I began sharing successful strategies I had learned in therapy to help them. I became an unofficial peer mentor and realized I liked helping other students. 

During high school I got a job as a teacher’s assistant in an after-school program working with six- and seven-year-olds, many with behavioral challenges. One of my favorite students was a second-grade boy who had frequent outbursts. Sometimes we just sat and talked. I explained why his behavior was not acceptable and gave him time to calm down before we talked about how to get him back into the group play. 

As a result of the obstacles I have overcome and the experiences that shaped me, I now know I am a strong, determined, compassionate person who has the drive to pursue a career helping others. I am currently attending college to earn a degree in social work so I can help behaviorally challenged adolescents struggling with emotional setbacks.

I try to tell my own story with the hope that doing so can change the perception of mental illness. I want people to understand that a person who suffers from depression or anxiety or who struggles to regulate their emotions is still a person who might be funny, smart, compassionate, accomplished. That person can be an effective employee, a good friend, a parent, a teacher - with the right supports people can achieve despite, or even because of, their mental health issues. 

Life continues to present challenges and there are times of the year when I struggle with depression. March is especially hard because that is when Papa died. But I have learned to fight my way through the difficult times, knowing that those days will pass. Sharing my story with you today helps.  So, thank you.

About The Author:

Marina has struggled with depression, anxiety, and self-harming behavior since childhood. Adopted from Guatemala and bullied at school, she often felt like she didn't belong. With the support of her mother and her mental health providers, she has faced her challenges head-on. She is currently a junior social work major at Simmons College. She is a dedicated mental health advocate, committed to sharing her own story to decrease the dangerous stigma associated with mental health conditions. She hopes to work with children and adolescents after graduation.

High in the branches of a maple tree, with my feet planted firmly on a large branch, I stand with my arms hugging a higher limb, looking out over the field of grass browning in the cool autumn air. The colorful red, brown, and gold leaves dance around me as the wind gently blows, bringing smells of dry decay to my nostrils as I draw a breath deep within my chest to catch every note dancing on the wind. The bark scratching the skin on my hands and arms feels drier and coarser than the summertime bark. The combination of wrestling leaves, breeze howling, and the call of crows is interrupted by my name being called, "John, what is the answer to question number three?"

My focus adjusts and a classroom comes into view once again. Desks in neat rows like cars in a traffic jam on the highway, flat walls at right angles adorned with posters highlighting sentence structure, defining prepositions, and literary quotes from supposedly great men. The air hits my nostrils again, now impregnated with that stale smell that has always made me tired, while 20+ other 17-year-olds stare at me along with a clearly frustrated Miss Der-Dolder, my high school English teacher. I must have been in the tree for several minutes because I am multiple pages behind and have no idea what the answer to number three is, not to mention the question.

As a wave of shame floods my system with the adrenaline of a cornered animal prodded by its captor, I quickly flip pages to where I see questions numbered and develop my witty response. The teacher scoffs and answers the question for me. Thankful that the pressure is off I look down at my open book and pretend to write, filled with both guilt and relief.

You see, high school English was the least interesting subject of many very uninteresting subjects in the mind of this very depressed 17-year-old male struggling with undiagnosed ADHD, who was failing school due to lack of attendance and the inability to pay attention in class.

I had been a passionate and innately curious kid. I taught myself martial arts from watching TV and practiced for hours on end. I took up archery, setting up targets in the wild Idaho land surrounding my house, and became a skilled bowman. In seventh grade, I mastered Dungeons and Dragons, studying the rule book like a research scientist. I was hungry for knowledge, but school deflated that desire.  

One of the greatest tragedies of this time in my life is that I was actually very bright and knew that something was wrong, but my attempts to explain the void I felt to school counselors and teachers only resulted in them piling on more study halls and mandatory after school catch up work. I felt trapped and misunderstood.

I was soon suspended due to lack of attendance—an ironic punishment-- and though I attempted to finish 12th grade through night school and summer school, the lack of support at home and in school led me to give up, completely overwhelmed and ashamed.

In my childhood, we normally moved two to three times a year, which meant I normally attended up to three schools a year. It was normal for my sister and me to spend hours at night hanging out in the parking lot of the Cub tavern, forbidden to leave the car until my mother finally emerged. It was normal to have a whole new cast of characters being entertained in my home at 2:30 in the morning when the bars closed, and to be threatened with violence when we asked to have the music turned down so that we could sleep because we had school in the morning. I normally witnessed violence--physical, verbal, mental and emotional. I normally felt afraid to even say sorry for fear of being hurt. My parents pulled their first all-nighter, leaving my sister and me home alone, when I was 8 years old. Later, it became normal for my mother to disappear for days or sometimes weeks.

My normal was chaos.

By age 17, with all plans to finish high school abandoned, I sunk deeper into depression. The idea of working a job to survive drained the life out of me. Kitchen work and construction seemed the only entry-level jobs I could find, and both of those environments felt hostile and unappreciative, with an “I own you” mentality.

I had moved out of my family’s home just prior to being kicked out of school and moved in with a friend who was living in a destitute shack on his grandfather's property. The Shack was built in the 1930s and was cobbled together for a 5-ft blind woman out of an old pull trailer with a classic Mickey Mouse drop pin hitch. There was no foundation and the house had settled in a couple of places and rotted in even more. There was no floor left under the bathroom sink and a frog would often shower with me as I cleaned myself in a squatting position because it was so short. After a year, I finally gave in to the idea of drinking and smoking marijuana. At first, it was uncomfortable, and I felt out of sorts and even more disconnected from myself, but I remember the night everything clicked into place, and I felt powerful, acknowledged, and seen.

Five people stand in the kitchen with a single burner of the stove on high and two knives resting in the coils of the burner glowing red hot. My roommate and I had cleaned our paraphernalia-- mainly a single utensil we called the pounder, and 64 knife hits of resin lay before us. I have the steadiest hands and the most confidence, so I am designated as what we lovingly refer to as the blade master—or Master Hall--the one who administers the hit to each person, even though I am also absolutely intoxicated. As each person steps up and inhales the smoke from the carefully prepared hits, we bear-hug each other with lungs full of smoke to increase the effect. We laugh so hard. The camaraderie and acceptance, together with the mind-numbing effects of the drugs, allow me respite from my suffering.

Who would have thought that a childhood steeped in an environment of heavy substance use and chaos and no healthy skills would make me a perfect candidate for using mind-altering drugs as a coping mechanism? I found my peers through the party network. They had lived through similar experiences and knew what it felt like to fall through the cracks of society. They accepted me and acknowledged me. I felt valued and grew to value them as my people, my friends, and my family.

But I still felt uneasy and miserable inside, and I looked for ways to escape beyond recreational drug use. Always a seeker, I studied physical disciplines, mental disciplines, spiritual philosophies diving deep into meditation and mindfulness, which gave me a great deal of clarity.

I had a few stints of sobriety lasting years, but when bigger life challenges hit-- mostly consisting of romantic relationship difficulties--I quickly returned to substance use for relief. Alcohol became my drug of choice.

At age 45, I got four DUIs in a short period of time and was sentenced to two and a half years in prison. This is when I finally surrendered. I was just so tired of feeling ambivalent, untethered, and alone. I knew I needed to ask for help and within days of receiving my fourth DUI, I entered an outpatient rehab and made a commitment to get out of my own way.

It was then, during a therapy session, that I had a healing vision: I see my adult self walk into a dark room with no windows in an old Victorian house. I recognize a child sitting on the floor in front of me, curled up in a ball, knees held close to his chest. It is five-year-old me, scared and alone. As my adult self, I step to him, pick him up, and tell him that I love him. I reach into my coat pocket and pull out a key. “This is the key that unlocks all the obstacles of the past,” I tell young John. “We will unlock them together.”

When I entered prison, I decided that this institution would be my Monastery and my University. Within the walls of my new high-security Retreat Center, I sought out any and all systems, books, and individuals who could give me answers to a lifetime of suffering and that is exactly what I found.

I met with mental health counselors and was finally diagnosed with ADHD, PTSD, and generalized anxiety disorder. I began to read and participate in groups with a true student mind while addressing my alcoholism through the AA community. Hearing the experiences of other people struggling with mental health and substance use disorder gave me a sense of belonging and hope. I worked the 12 steps with a sponsor and found great clarity and accountability in my story. This, in combination with reading and participating in groups about anxiety management, shame and self-esteem, codependency and healthy relationships, PTSD, and grief and loss gave me the coping skills that I had longed for my whole life.

Today I am more than five and a half years sober and work as a mental health group facilitator, a sponsor in the AA community, and as a peer support specialist. I have found purpose and passion in helping others understand and manage their mental health and substance use disorder. I have also changed my relationship with the past and the cards I was dealt in life. Where I once was a victim, I am now the hero of my story. Those pains that I suffered are experiences I get to share with others so that they can believe in the possibility of change. I can say with all sincerity that I would not trade my experiences for anyone else's. They have made me who I am today.

The curiosity, passion, and adventurous spirit of my boyhood have been re-awakened. Today, I focus my energies on being the best that I can be, and on helping others who are struggling. Although I still have hard days, I am stronger than I have ever been. I love myself. I trust myself. I am a receptive student of life.

About the Author

Born into the family disease of alcoholism, John Hall has been faced with generational disfunction and a lack of healthy coping skills. John struggled as a teen and young adult with depression and anxiety. His lack of knowledge about mental health led to it being untreated until his mid-40s, when John was sentenced to prison for DUIs, as he himself was self-medicating with alcohol. He used the two-and-a-half years he was incarcerated to study and better understand his own mental health and substance use disorder. Now, John helps others who are going through the journey as a peer support specialist, Nami group facilitator, prison mentor and public speaker. He believes that every moment is an opportunity to improve our lives and help one another.

By Regina Beach

I have so many feelings around living with Multiple Sclerosis (MS). There’s the grief of the life I thought I’d live that will likely never materialize. There’s the sadness of feeling helpless and incompetent at basic things, taking forever to do tasks like cooking, cleaning or getting ready for the day. I need support for the errands and minutiae of daily life that I used to take for granted. 

I also feel a lot of shame: over not making it to the bathroom in time again . . . and again. There’s the shame, (or is it regret?) of not getting my symptoms checked out when they first emerged. Would I have been able to stem the tide of profound disability with more hasty intervention? There’s also the guilt I feel for relying on my husband to take care of me. He does the lion’s share, earns the lion’s share, and takes care of the house, carefully planning with me in mind. We were barely married when I started having symptoms. I regret he only knew me for a few years in my old body that could hike and bike and run and dance. 

I have never been so aware and yet so unaware. I stepped on a shoe in the living room yesterday when I came home from physiotherapy and fell on the floor, totally unaware of my surroundings, where I was standing. I do that with my own legs; sometimes I forget they're crossed or don’t know what I’m stepping on. 

I’m also hyper aware: of the pins and needles in my feet, of the way I walk and the stares that accompany me if I’m in public on my own. I’m better able to steel myself when I’m with family or friends. I’m aware of my bladder, worry about my bowels, but awareness doesn’t always equate to control. 

I feel frustrated not knowing if I’ll have a good day or a bad one when I get up. Will I be able to walk well or hardly at all? The inconsistency is maddening and sends my type A plan-ahead brain into a tailspin of myriad eventualities to plan for: What if I feel like this? What If I need that? What if this happens? I can’t be spontaneous anymore. 

I feel anxious about the future. I know there are people who stabilize, even improve their symptoms, shrink their lesions, live with more or less benign MS, but will I be one of them? My symptoms have been with me a long time and with every passing year I feel like recovery is just that much more out of reach. Will I deteriorate? Will I need constant care? Will my cognition fail me? My aphasia worries me the most. Forgetting names of people, of companies, of household items. I love words; they have been my constant companion. Who will I be if they run out one by one? 

I also feel compassion in a way I never have before, for the elderly, those with visible and invisible disabilities, and those whose brains are wired differently. I used to be strict and unrelenting. I was in the camp of “do more, try harder, work more and surely anything will be surmountable.” I’ve softened, admitting some mountains just can’t be climbed. 

I’m grateful for the good days, the community I’m developing, and the incredibly diverse group of people MS has brought into my life. I have a global community united by technology and membership in a club no one wanted to belong to. I’ve met people all over the globe who have introduced me to a healthier lifestyle. Even if I am so sick in some ways, I’m eating better than I ever have, managing my stress better than I ever have, and thinking of myself first in ways I never have before.


I’m in a better headspace than I was a year ago. It’s been four years since I felt the first tingles in my feet. I was a real mess emotionally for a long time. Anxiety and depression are now recognized as MS symptoms and not just secondary conditions that often coexist with the disease. I used to feel a lot of bitterness and resentment toward everyone with MS who can still walk, who can hold their bladder, who has seemingly milder cases than I do, but who’s to say really what’s actually worse? 

A year ago I would have struggled to find the silver lining. My partner has lived up to his promise that we’ll still see the world, just in a different way and at a different pace. He’s promised to stick with me, even when – and perhaps especially when – I’m difficult to love. I’m sure he has a lot of emotions around MS, too. Helplessness, anger, feelings of unfairness, discomfort, but he has never been upset with me, never blamed me, never accused me of faking or exaggerating a symptom. I know others with partners who are less generous in spirit around this ever in-flux disease.

I know that my feelings will change. There are people who say getting sick was the best thing that happened to them, that they got clear on their priorities, changed their jobs, dove into their bucket list, are healthier and happier than they’ve ever been. I’m not one of them. I’m not there yet and I don’t know if I’ll ever get there. But I don’t think that they’re the toxically positive Pollyannas I use to think of them as. Now I think they truly believe what they say; maybe they have found the needle in the haystack, the diamond in the rough, made their own pitcher of lemonade. Maybe someday I will, too.

About the Author

Regina is a disabled poet and essayist. Originally from the American midwest, she now calls the Welsh Valleys home. She is the inaugural poet in residence at the Risca Industrial History Museum for 2024. Themes in her work include the arts, culture, travel, wellness and the unique people and places in those spheres. Her writing has appeared in Global Poemic, Boldly Mental, The Rail, Haiku by You, Five Minutes, Visual Verse, The Horror Tree, and Disoriented among others. She is the founder of the literary magazine Lesions | Art + Words, which features the work of people living with chronic health conditions. Regina hosts Writers’ Hour and a monthly virtual open mic for the London Writers’ Salon and is the editor of the Salon’s Writing in Community anthology. She facilitates monthly writing workshops for the MS-UK charity and is the producer of the Living Well with MS podcast. Regina has written about living with disability for Overcoming MS, the MS Society, MS-UK, the Unwritten and Wales Online. Read more of Regina’s writing at reginagbeach.com or subscribe to her newsletter at reginagbeach.substack.com.

By Martha Duncan

Ten, an important number: ten years to grow a tumor,
ten hours to cut it out.
While punctures blackened my arm,
I remembered being ten with a wart on my knee,
wanting to keep it as part of me.
Nicked open, I went away for ten hours.

I'd been away for a long time, but not like this.
Some people thought I'd been duped by a man, nabbed by a cult, or kidnapped into old age:
not johnny-on-the-spot as before, but
spouting foreign gospel,
losing my words on the phone.

Not knowing I could still
fear darkness like a child,
I went in and under the saw
and came out wondering
if my skull was still my own.

Transformed and transfixed,
not informed whose blood I used,
I woke from mists
and talked to people
as if I'd actually been there all along.
They gave me their best.

For the rest, the swishing in my head was
a scary storm, fall leaves rattling in
torrents, till the Bindu appeared,
and the nurse to rate the pain, give
pills to help me sleep or at least
slake the ache for a while.

She wrapped soft boots to massage
my clot-susceptible legs.
For the post-surgery debut,
she wound and tucked the fringe
of my pashmina scarf to cover the shave marks.
Not bad, I said, to the mirror.

The bouquet of primary colors
stood in black silhouette on
the nightstand each time I woke
to the monitor beeps
fading in and out
as doors opened and closed.

Now everything seems to be 
happening again for the first time.
I often feel I'm being re-populated
by people I've known. All my life.
I listen to their voices when I'm alone.
Add my own. Play the game, close to the bone.

About the Author

Martha Duncan was born in Fort Wayne, Indiana, and for the past forty-seven years has lived in California, Massachusetts, and Maine. She has published three chapbooks: Being and Breakfast, Just Enough Springs, and Beanblossom. She is working on two memoirs: Grocery Girl and Almost Like a Mother.

Martha’s poems have appeared in Puckerbrush Review, Aputamkon Review, and Four Zoas Night House Anthology. Her short short story "Grandmother's Funeral" was included in the I Thought My Father Was God collection sponsored by the NPR National Story Project. Recently, her poem "Abortion, 1968" was accepted by the Grandmothers for Reproductive Rights for publication on their web site. Martha has published articles on women and literacy in The Change Agent, a publication of The New England Literacy Resource Center in Boston.

Martha received a B.A. from the University of Massachusetts and an M.Ed. from Lesley College. As an adult and community educator in Boston and Sullivan, Maine, she worked for 30 years with students from U.S. and 47 other countries.

March 17, 2024 marks the 10th anniversary of Martha’s brain surgery! 

By Glenis Redmond

Facing death
I know that there is more to life 
than what we all can see.
In the ethers 
I hold onto invisible threads
of what Mama and Grandma passed down:
golden and silver cords of hope, courage, and faith.

With Multiple Myeloma
I have lost more than

the 20-year-old brown locks
that hung down my back.
I have lost my hand and heart
extended for 27 years
taking poetry to students
across the country
across the world.

I lost the music in my smooth stroll.
I have not danced for ten months.
I lost my breath––
the capacity of my lungs
punished by pneumonia twice.

I lost my hair, 
my bald head gets looks: outright stares.
People cannot hide their questions 
or hide the horror
scrawled on their faces.

My self-portrait is a Frida Kahlo-esque painting.
My illness turns me inside out
paints both the seen and unseen.
I am surreal. 
I am lesions on skull, clavicle and femur.
I am cracked bone and marrow siphoned
I am weekly blood draws.

I have had to hold my own hand
to save my own life––
2.5 million stem cells needed
I summoned 12.5 million, a record.
Don’t believe them when they say,
“This procedure will not hurt.”

I am High Dose Chemotherapy.
If the cure for cancer does not kill me, I’ll heal
the shadows on my face 
are maps of where I have walked,
landings without light. 

53 days later, I am lighter,
a shapeshifter on this path 
I did not choose.

Yet, between the veils 
I morph into this dreamlike mist.
I feel like both an angel/ancestor already.
Time is surreal. 
I am glad to escape death this go-'round,
but I saw the Grim Reaper twice––
his scythe ready to level me.
I have come through this cancerous fire,
finished in the kiln at the highest heat,
a hard-won beauty lit from within.
I duck and dodge

Summon strength as:
Warrior Woman, a Black Southern Sage.
I meet the looks I get with a direct gaze.
Stare translated: If cancer couldn’t kill me, you sho can’t.

About the Poet

Glenis Redmond is the First Poet Laureate of Greenville, South Carolina. She is a 2023 Poet Laureate Fellow selected by the American Academy of Poets. Glenis has published six books of poetry. Her latest books are The Listening Skin (Four Way Books), Praise Songs for Dave the Potter, Art by Jonathan Green, and Poetry by Glenis Redmond (University of Georgia Press). Glenis received the highest arts award in South Carolina, the Governor’s Award, and was inducted into the South Carolina Academy of Authors in 2022. The Listening Skin was shortlisted for the Open Pen America and Julie Suk awards. Glenis has performed nationally and internationally from Hawaii to Haiti. She has toured in England: London, Liverpool and Luton. She speaks for the U.S. Department of State's Bureau of Educational and Cultural Affairs (ECA) US. She presented in Muscat, Oman, in 2016 and virtually for students in Guatemala and El Salvador for Juneteenth in 2023. Glenis is a veteran and a former Captain in the Army Reserves. She is a medical advocate. Glenis is a mother of twin daughters, Amber and Celeste. She is a Grandmother (Gaga) to Julian, Paisley, and Quinn. Glenis believes poetry is the mouth that speaks when all other mouths are silent.

Photo Credit: Eli Warren

By Liz Fullwood

The mice never developed the words freedom, earnest, envy.

I am a scientist. I am supposed to create change. I hear my family, my mentors raving about my work and how I will bring a better tomorrow. “Make sure you solve Alzheimer's before I'm too old,’ my aunt jests. “I can't wait to see how you revolutionize medicine,” my grandmother coos. Yet, day in and day out, I go into the lab, observe the behavior of my mice, do an analysis, and then go home; Nothing changes. This cycle repeats over and over and over again, but it's not just the 9-5 job that cages me. Culture is claustrophobic; Nothing ever satiates this tasteless haze of desire. Our motives and minds are driven by the undying hunger for achievement and the fruitless life-long pursuit of happiness. Why do we frantically accomplish but listlessly live? We are asked what we want to be, and what goals we want to reach, never considering the alternative; I don't want either. I am an orca at SeaWorld, trained to perform, to please— but even if the hoop changes, it's still the same jump at the end of the day. How long am I expected to perform the act in which I was trained? I am grateful for my privileged experience, and I am still looking for a way out of the enclosure they call the modern lifestyle.

In a way, I am jealous of the enclosure the mice in my research facility dwell in.

The lab mice have food, clean water, housing, toys, trained professionals to look after their health, and a quick and painless death. They are never aware that they could be aware, and they never dream of anything outside their containment. Their suffering is brief, and they have a higher quality of life than most humans. The world is falling apart, and all we are doing is filming it. Both the forest and the tongues of the people are on fire. Children are dying, the rich keep getting richer, and water is not deemed a human right. Currently, my transfeminine, Jewish girlfriend is struggling to find housing due to the current political climate. I work over 50 hours a week to pay for a place to sleep and to put food on the table; It is never enough. I can’t help but wonder if there is more to life than this.

Lab mice may be poked, prodded, and undergo experimentation but they are never expected to be more than what they are.

All I want is to be human. Yet, I can only actively be another cog in the capitalist machine; that is how you survive. In today's society, you can’t have achievement without sacrifice, you can’t have love without grief, and you can’t have pleasure without addiction. So where does one go when chaos is all there is outside? One folds within. My bed is a foam pit and my spirit toddles on a tightrope of dysphemism. All I want is to curl up and dissolve in the innocuous embrace of my lover. I want to exist in each breath we breathe together and be free of my own head space. My psychiatrist deems it depression and writes me a note for happy pills, but that’s not it. I've been to the pits of despair and lived my middle and high school years in a constant state of apathy. This current hopelessness has too much yearning; is this grief? I lay on the navy-blue couch in my 3rd -floor apartment and watch as traffic passes by. The sirens that used to put me on edge are now just dull background noise. I turn on my phone and scroll through Instagram. Terror, death, destruction, cute pets, and the latest pop culture gossip all held on my tiny screen. Everyone has a cause they are fighting for, an opinion that you are not supposed to disagree with. I can't help but wonder if being humane is not the practice of quiet benevolence but rather perfecting the art of scratching a phantom itch. Scientists say creatures are born performing the skill that is essential to survival: giraffes are born walking, sharks are born swimming, and humans are born crying for help.

The mice live in isolation and are never able to form their own mischief.

I have a community. There are people in my life who listen to me, who actively care for me. In this I am blessed. This world may be exhausting, and life may be a sexually transmitted disease that ultimately ends in death, but unlike the mice, I am not alone. I have been able to find people who are now close to kin. They are my motivation each and every day to get out of bed, to work the 9 to 5. I feel like blunt scissors, desperately trying to make a difference but never able to fulfill the one thing I was made to do. Yet, I am held, someone decided to give me a chance and then kept me around. So, thank you, all of you, for showing me love and compassion. Each laugh and every cuddle bring me hope for a better tomorrow. The mice will never understand the bliss of their situation, but they know to be content with their enclosure. So, though it drains me, I will do my best to be content with mine.

Author Statement

I search for understanding how to operate in today's world I found that we have domesticated ourselves.

Photo Credit: Matt Bero

By Annabelle Hatsav

As my phone fell to the ground, my body went with it. Everything went blurry and I couldn’t even understand what was coming out of my mouth. A fire lit inside my chest.

“She’s gone, I’m so sorry Annabelle.” I don’t believe it. I keep asking why, why, why? We were just texting a couple of weeks before this. We had plans, this was not meant to happen. God please tell me this isn’t true. I kept touching the gravelly pavement beneath me to ground myself, to feel that this was all real. I faced dark green bushes trying not to fall forward or draw attention to myself. This is not real, this is not happening. She is not dead, she is not dead.

I heard footsteps approaching me as my tears poured down my face like a faucet. “Are you okay? Do you need some water or anything?” A staff member asked me. “No, I’m fine, thank you.” I lied. Usually, I’m so good at pretending I’m fine, but I don’t think I could have put on a more convincing act.

One of my best friends texted me a message I never saw coming. “I heard what happened to Ava*, I’m so sorry and I’m here for you if you need anything.” I didn’t want to assume the worst. Please don’t tell me she died. Please don’t tell me she killed herself. Please don’t tell me she’s not here anymore.

Don’t jump to conclusions. “Ruby please tell me it’s not true, what did that text mean?”

“I’m so sorry Annabelle, Ava killed herself two weeks ago.”

The worst was true. My body was on fire as I started hyperventilating and sobbing in the driveway of my camp. Feel the ground, feel that you are real. I couldn’t breathe. I couldn’t do anything but cry.

Questions were popping into my head as I sat there. How long was she feeling that way? Should I have reached out more? Should I have made more of an effort?

Somehow it felt like my fault. When people talk about suicide loss they often talk about survivor’s guilt. It’s not the feeling that it should have been you, it’s the feeling that you could have done more to help. That it’s your fault until proven that it's not. Every interaction I had with Ava was rushing through my head and I was feeling the survivor's guilt heavily. I told my mom about it and she didn’t know what to say. I told my brother Matan about it and he was speechless. I told my therapist, and she assured me, it was not my fault. How could I believe her? The feelings pounded through my body every time I thought about her, which was every day for weeks.

I didn’t know what to do with myself, but I knew that I couldn’t be alone. All my friends were in a meeting on the other side of the camp, which I was late for. There was no way in hell I would go to that meeting. But I headed there anyway.

I dragged my feet through the freshly cut grass passing by a gathering of staff members. Don’t look at me. I couldn’t stop the tears, I knew I would eventually get dehydrated then my body would really start shutting down. One of my campers walked past me and saw my red puffy face so she asked if I was okay. I gave the classic answer: “Yes I’m fine, don’t worry about me.” And continued on my track to find a friend, anyone really. My friend Adam was playing basketball when I saw him. I knew he would come running to support me. He wrapped his arms around me and said, “Where do you want to go?”

We headed into the woods to a dock overlooking a lake,  a beautiful place where a lot of counselors would come to think. On the way there he held me as I was shaking and couldn’t stop. We hobbled so much shit in our path. He tried to make me laugh, I did, but I couldn’t stop my mind from racing. I watched the water ripple as I talked in my shaky voice. My head started to hurt as the water left my eyes so willingly.

Ava, my friend from middle school and high school, was two years younger than me. In middle school, we did crew backstage for the plays together. I was the stage manager and she was a perfect crew member. I was her mentor, I answered all of her questions and helped her with everything. I remember feeling so valued by her. She made me realize how much I could give to others, and how much she could give. Ava called me freckle. She said it was because I had six freckles (she counted), and I loved it. When I left to go to Paris for my freshman year of high school, she was worried we wouldn’t keep in touch. She said she would miss me a lot, and I told her I would too. We kept in touch and when I came back, I was so excited to see her again, and I would always answer her questions.

When she entered high school, I wanted to still be a good influence and mentor, but also her cool older friend at the same time. I tried my best and always made time for her, then I graduated.

I felt that I didn’t keep in touch enough after I graduated. I felt guilty for not texting her as much. We texted once in a while, and I always kept up with her on social media. But it wasn’t the same. A month before I left for camp, she texted me saying she was going to Wheaton College in the fall and that we should hang out. I suggested we hang out in New York before the fall because I missed her. She said she missed me too. I will always miss her.

Those texts ran through my mind for the next few weeks. I thought about how I could have asked her how she was feeling, we could have called. I should have done more, I should have asked more questions…I should have connected with her more. All the what-ifs were circling my brain and making me spin into a guilty state of mind. I had to remember, this was not my fault. How could I have known she was depressed?

I didn’t bottle it up this time, but I did keep it from my friends for a week. Being at camp and receiving this news was so conflicting because of the high-stress environment where I had to be responsible with a positive face on all the time. I couldn’t afford to mourn.

It was like I was floating above my body and observing what was going on below. The camp counselor in me wanted to keep it together so badly, but I had my moments. Thank God my co-counselor was one of my best friends and understood that I needed time for myself. But I didn’t tell my other friends until they asked me what was going on.

It was the worst, yet the best place to be to mourn. I knew I had so much love and support around me, but I just couldn’t ask for it.

I wrote in my journal after Ava died. I wrote letters to her asking her why she did it, begging her to forgive me. For what? I’m not sure. I messaged her on Instagram telling her I missed her. I spoke to her ghost trying to find some peace. I found out the funeral was recorded on YouTube, I never watched it, I’m not sure that I ever will.

Why’d you do it? I asked her over and over again in my moments of being alone. Please tell me why. Send me a sign. Anything.

Thinking about Ava made me think about how happy she was with me. She left my high school after I graduated to go to a different school. I wonder if that’s when she started having suicidal thoughts. Or maybe it happened before that. It’s so incredibly hard thinking about all the things she’s going to miss out on. Fuck my school for not doing enough. I had to direct my anger somewhere, so I chose my high school instead of myself.

I found out about the American Foundation for Suicide Prevention in 10th grade and how they host walks to raise money for suicide prevention all over the country each year. I loved the idea of seeing people who had similar experiences and feeling a sense of community, rather than feeling alone. The first year I went on the walk it was beautiful, I cried the whole time around hundreds of people wearing t-shirts with family members that died on them and crying with their friend’s arm in arm. I have participated every year since, and I never plan to stop. Ava made me want to fight even more for the discussion on mental health, and how anyone can prevent suicide.

I will never be the same. I call into question my own actions to my friends. Am I being a good friend? Thinking about each time I hear the news it never gets easier. My body catches on fire each time and I gasp for air reaching for something that slipped away moments before. I remind myself each day how lucky I am to have the support I need, and how I wish Ava had the support she needed. I can’t turn back time. I can go back to the moment of me sitting on the pavement in disbelief that she was no longer on this Earth.

I will miss her every day. I will never stop fighting for suicide prevention because it’s a part of me, my story, and so many others too.

Rest In Peace, Ava.

*A pseudonym was used to protect the privacy of the family.

About the Author

Annabelle is a third-year student at Northeastern University studying English and Communication studies. She loves writing non-fiction and poetry, and in her free time she enjoys baking, reading, and spending time with her cat.

By Emily Cheng

The air in my parents’ restaurant is hot and greasy and always loud, but that is how they know it is good. I first stepped into the restaurant when I was ten and didn’t know anything. My parents were owners of a Chinese restaurant, and I didn’t even know what a wok was. They brought me in to “work” when they couldn’t find a grandparent or uncle to watch over me. I would sit by my mother and do the simplest tasks, packing white and brown rice into Chinese takeout containers. With every container I finished, she would tell me “not enough, more, more.” Then, she would take the container out of my hands, scoop triple the amount I had filled, and pack it with the rice bursting out of the paper box. She would always give more rice than I thought we could afford.

 When it was not so busy, I eyed the chefs who held large metal woks and tossed food with them like it was nothing. I would learn that these woks were the key to a real Chinese restaurant. They needed special care—constantly seasoned in oil and heat to produce wok hei, the breath of the wok. Over the shouting of my mother and chefs in the kitchen was the sound of oil sputtering and popping at the addition of washed green scallions. I had convinced myself that this was the wok breathing life into food. And in this same way, the woks’ air would season the whole kitchen—its staff, the walls of the restaurant, and the greasy floors—imbuing itself into everything. 

***

In mid-October, my father called to tell me that they have decided to sell the restaurant and have found a buyer. They’ve spoken about it a few times, but it was something so distant it didn’t seem real. “I just wanted to let you know.” So simple, unsentimental.

I didn’t have enough time to think of an answer for him, so I only began to process after he hung up. Did we have enough money to live? It was the most obvious question, and I hope they had thought this through. How much was the restaurant? But more accurately, how can you assign a price to this? Overnight, everyone had seemingly become hard and unemotional when all I could do was feel. Feel for all the stories unaccounted for.

***

My father remembers his childhood at the restaurant as the worst time in his life. It is a Chinese tradition that the oldest son is the one who will suffer the most. He was the one to care for his younger siblings and the only sibling expected to help in the restaurant, tasked to hold the family together while his parents worked in the kitchen downstairs. 

After high school, he would return to the restaurant and help my grandmother take orders at the front. My grandmother, overwhelmed with stress and responsibilities, would verbally lash out at him in front of customers and the entire kitchen staff. Good for nothing! Stupid! Worse than garbage! Words to that effect. Words my father could not believe a parent could say to their child. 

When my grandparents retired, they urged him to take it over; they saw it as the greatest gift they could pass down. And as the oldest son, my father could not refuse. Traumatized by his childhood, my father spent nearly the next 40 years working at the restaurant. He has worked through countless invoices and business statements until he physically could not handle seeing numbers anymore. He started taking medication to help him through this, but eventually it stopped helping. At his lowest point, he stood at the top of the third floor of the restaurant office and attempted.

I remember my father before this time. He would come home and play with us and smile. He was so happy to just be with us, in the moment, alive. He has never been like that since. He had survived, but some part of him had died in the restaurant many years ago.\

***

Now, he’s cleaning up the mess from the past 50 years. He has been moving out his sister’s old books and his parent’s picture frames. As much as the restaurant has hurt him, his texts to our family group chat read a bittersweet. “Today I realized Cleaning out 30 years worth of stuff is quite exhausting.” 

The second floor of the restaurant is an office that looks more like a dump. It is a collection of everything discarded, but not thrown away. My father sends us a picture he’s found of him and my grandfather in the clutter of that office. It’s him as a kid. My grandfather has on a yellow polo, one arm wrapped around my father, wearing a matching polo in white. I don’t recognize my grandfather in this picture, but they’re both smiling. And for some reason, I find myself zooming on the icee my father is holding because seeing him as a kid brings out something so sad in me that I don’t want to feel it. All I can see now are his tiny fingers gripping onto a paper cup.

***

My mother has no fears. While my father works in accounting, my mother works in the kitchen, in the fire. She comes home with cuts and blisters. I’ll ask if she’s ok, if it’s painful, if she can still go back to work. She won’t give it the slightest attention. “It’s not anything.” Her hands are not rough, but strong, necessary to push woks, withstand burns, and raise children.

She was like this even before I was born. When my mother was pregnant with my older brother, she continued to work in the restaurant. She called orders and cooked and sweated in the humid New York summer air. 

For one order, it required lobster which they had not prepared that day. My mother, big-bellied but still strong, walked downstairs to the restaurant’s inventory to start preparing the ingredients. On the way, a coworker bumped into her, and she fell one flight of stairs down to the bottom. My mother was rushed to the hospital by my father who had already started grieving. When she was told she and the baby were fine, she had taken that day off, then returned to the restaurant the day after.         

She kept working all the way to August, until the moment before her water broke.

***

My mother has spoken with the Chinese man buying our restaurant and his lawyer. She’s been managing stipulations, lawyers, contracts, and all the things that she does not understand. And she feels herself getting older and smaller, fading into a shadow of her past self.

“You are in such a good place. To have perfect American English.” I can type these words, understand the nuances of English words, and find beauty in the language. But when she tries to negotiate with the lawyer, she gets pulled aside and her English is called “childish”—like she is playing games by changing her mind, but it is only that she is unable to explain her thoughts in American words. She tells me this is what happens when you are bad at English. 

For so long, I’ve been trying to learn Mandarin, but even with Sunday Chinese school, textbooks, and living in a Mandarin-speaking family, my fluency is still that of an elementary school student. Sometimes, I think about all the stories my mom wants to tell me but can’t. All the words that she knows in her perfect Chinese, the three dialects—Mandarin, Cantonese, and Fuzhounese—she’s fluent in. 

I know she is not a shadow of who she was. She is only waiting in the shadows, holding onto the words she knows. She is biding her time, planning her moves, and learning her options in an American world. And when she’s ready, she’ll strike. 

***

I am angry at myself for wanting to hold onto the restaurant. For even feeling sentimental towards leaving it behind. It has been the source of my parents’ despair for decades. I should really be celebrating, cheering, and jumping at the idea of it never being in our lives again. Leave it somewhere far, far away. For too long it has been a mass, growing and growing, becoming unbearable and draining my parents. Cut out a pound of the flesh that feeds on the pain of good people. Cut out this tumor.

But as much as it has hurt, it has supported three generations of my family. It is my grandparents’ true first-born, and my parents’ entire lives. As I’m going back home to see the restaurant for the last time, I am going to indulge in the gluttony, filling myself with the pain, hurt, love, death, and ends of my moments being there. It’s like I’m gripping onto a broken wok, seeing all of its scratches and imperfections, and trying to learn to let it go. I know using it will break it—the shards recutting the wounds of my family. 

So once more. Before I go, I’ll oil it one last time, give it heat, give it breath, give back all it has given to us. In return, we’ll slowly learn to move on and learn to feel the way it has breathed into our family new life.

About the Author

Emily is a student, writer, and her own personal chef, honed from her experiences at her parents’ restaurant. In her free time, she is an avid puzzler and admirer of her dog, Truffle.

By Ashley Brown

Held down. I remember light and I remember terror. My heart races. Stabbing searing pain three times. Three permanent tattoos across my hips. “To make sure we line you up for radiation correctly every time.” I stare at the ceiling, following the circle of light that changes colors. Changes colors just like my skin, now thin, brown, and brittle. On the ceiling, there is a circle that is a rainbow. Real rainbows are circles anyways. They burn the cancer from my body, just my skin is in the way. Every Friday, I sit in the car on the drive and then they burn me. Until my skin breaks and until I move through the degrees, end on third-degree burns. I wake up in the night and scream. A resident sees the burns and they change colors too, now a pale white. “We need to burn all of the cancer. We must continue.” They give me drugs now to numb me so that they can burn me. I drift away on morphine. They burn me and I burn.

I wore my first sports bra when I was six: it held my catheter, the tube stemming from my chest, in place. “This will prevent it from getting tugged by anything.” I dream of my sisters playing with me again and suddenly they grab the tube and pull. They pull and I unravel. I unravel, a spool of yarn untethered with each tug as my organs are pulled outside of my body. I still dream it.

I am at a sleepover and we want to watch a movie. I am 9 but the movie is rated PG-13. I ask to call my mom to get her permission. My friend laughs at me, but I don’t understand. There are rules. Don’t scratch your burns. Don’t play with your catheter. Rules are important. Knowing rules and following them mean I get rewarded. “If someone gives you anything but Tylenol, what do you tell them?” “I can’t have that. It is an NSAID, those are too hard on my kidneys.” I am very smart, very responsible for following rules. I hide my tears as we begin to watch the movie.

I am the new kid in a small school where everyone has known each other since kindergarten. They ask if I am in the wrong classroom. I look too young to be in 5th grade. At my new ice-skating rink, there is the group of big girls and the group of little girls. I am seen as too young, too bad of a skater, to be invited with the rest of the little girls. Besides, to get close to them, I would need to do synchro with them. You are not allowed to wear gloves for synchro and my circulation is too bad. My hands will turn translucent and then blue again. In every group number at our yearly Nutcracker, I am too young for someone to start a conversation with, too introverted to reach out myself. I am content with my own company at least. It does not matter that I actually am older than them. In high school, I get louder though. I beat others to the punchline. “I know, I look like a child. Maybe when I graduate high school, I will look 14! But hey, that’s cancer for you.” When I first get my driver’s license, I drop off my sister at rock climbing and go to pick up Taco Bell for her. At the drive through, the cashier sees me pull up and begins to laugh. “Are you old enough to be driving without an adult in the passenger seat?” I ascent wearily. She laughs more and tells her friend to come over here and see the youngest looking 16-year-old that he will ever see. I turn red.   

For the first five years after treatment, that is when cancer is most likely to recur. My body was a ticking time bomb. Every abnormal pain is the beginning of terror. Does this stomachache mean I have cancer in my stomach? Every year, I get strep throat and the lymph nodes around my throat swell into imaginary tumors. Any moment, my body could betray me, leave me without treatment options. “We can’t give you chemo again. There is a maximum dosage and you already received it.” I am told the next best thing we can do is find it early though, if it does recur. So, they hold me down again. They do CT scans, MRIs. All donut-shaped tubes, but at least these machines don’t burn me. They pronate my legs so that my toes touch and heels sit apart and then they tape me still. My heart pounds, tells me to run so that they can’t hurt me again. I focus on what I read about how kidneys work while they scan me. The doctors are always more comfortable when I want to learn more. It is something to talk about, something other than the silence, the small talk. I pass the five-year mark. Then they focus on the long-term effects of the cancer, of the chemo. They check my heart. Social workers ask how I am doing in school. I tell them I want to be a pediatric oncologist, or later a cancer researcher. They tell me what a good thing it is. I see them relax. I am saying the right things, I am telling the good story, the right one, the one they want to hear.

Am I healthy? Am I sick? I am healthy enough to the sight that any physical failing must be a moral one. I am healed, but I hurt. My kidneys grew with me during puberty, scarred and disfigured as they are, so I will not need another kidney until I grow old. Regular menstrual cycles, no matter how physically painful, mean that I am fertile, at least for now. But why would I want my own kids anyways? With my biology, I offer a 50% chance of damnation. My heart passes my yearly screening exams though and my liver continues unscathed. “You are doing so well.” They tell me that every year I go to my annual Long-Term Cancer Survivor Clinic appointments. How can I disappoint them? The doctors and nurses and social workers did so much to make my treatment manageable. To distract me from the horrors of it.

But that is not fair to me. 

Just because I have good grades, just because I am involved in extracurriculars, just because I have a long-term relationship does not mean that I am healed. It does not mean that my cancer basically never happened, just an unfortunate start.

Cancer is not my origin story either. In the pursuit of telling a good, satisfying, palpable story, I did not get the freedom to explore multiple visions of my own future. There was one path and it stretched on for years, a funnel into the perfect ending to my cancer story. Instead of exploring my interests, I obsessed over cancer and was lauded for my work ethic. No one thought to suggest that this might be a coping mechanism to understand my trauma. Even when I disliked every job related to cancer that I tried. I liked cancer most when I was learning about it, analyzing it at a higher level and connecting it to myself. But how could I tell people I did not see myself in a cancer career anymore? Because I only ever was interested in understanding it to understand myself? Because of trauma? But I am healed, that is the way this story is supposed to go. It is not like I do not have the talent. In fact, I would be wasting it if I do not stay in science or in medicine. It does not matter that I grew a distaste for so many other parts of it. Deviations are unimaginable.

But it is imaginable. Kids with cancer can grow up. It is not our duty to make others comfortable with that idea. I do not owe anyone a tidy ending. My ability to heal from my cancer was delayed, not hastened by the story of the long-term cancer survivor. I am not healed! I am tired of pretending that I am. But I will make up for the lost time, now that I can understand that I still bear wounds from my trauma, now that I understand that my story and my trauma did not end when I “beat” cancer. I am freeing myself from the shackles of other’s expectations. I feel the catharsis that I never found in the last 15 years of my life. I can begin to reintegrate cancer into my life story, but finally on my own terms.

About the Author

Ashley Brown is a senior at Northeastern University with a double major in Biochemistry and Health Humanities with a minor in history. She is currently applying to master’s in history programs where she plans to study historical cases of health inequities.

By Alexandria Raspanti

Women learn from a young age that their bodies are not inherently theirs. I was not an exception. I grew to understand that I live in a system where autonomy is earned. I was born to be sexualized, my breasts grew to grab, my clothes made to take off, body made to be used. I had a concrete understanding at age 13 that sex was a pivotal part of being desired as a woman. I sat in my bedroom watching the show The Girls Next Door and pushing my boobs up in the mirror. I daydreamed about looking like one of Hugh Hefner’s girlfriends. Tiny waist, pouty lips, bouncy hair, and big boobs. I thought that life would be easy for girls that look like that.

I met Aaron when I was 14. After one month of dating, grade 9 began. He decided that we were ready to have sex. I agreed that that weekend we would. We lay in bed and I knew that all I needed to do was get through this and wait for it to be over. It would not last forever. However, when the time came, the nerves interfered. I did not have sex that night, but he did. He left my house, went to a party, and had sex with another girl. I could never make that mistake again. I learned that my reservations make me replaceable. I was grateful to Aaron for not forcing me to have sex with him and finding someone else instead. I felt bad for wasting his time.

At the age of 15, I was in a turbulent relationship with an addict. I never experimented with drugs, but I was an expert on them. Day by day I cared for him, I stayed up at night checking his pulse, dipping his feet in cold water, wiping blood off of his face. I thought that mothering him would make him less inclined to hurt me. I don’t remember many of these events anymore, but my friends remember my recountings of them. By the time he left for good, I was 18 and he was gone, along with my childhood. He broke up with me when he was done with me. Psychopaths follow a specific routine in their romantic relationships: seduce, love bomb, bond, trauma bond, entrap, use up, and discard. Loving someone who could care less if you were breathing is an incredibly embarrassing and degrading experience. I wish I could say this is where everything changed, but it didn’t, not for a few years.

Older men have always found a liking for me, although it dramatically declined when I turned 18 and the thrill of an underage girl didn’t exist for them anymore. I was 19 and working at a hair salon, and I asked my boss if we could talk about my schedule. He said he would pick me up at 7 p.m. to talk about it over dinner. When I searched up the restaurant and saw the four dollar signs, I figured I should wear a skirt. “I love that you wore a skirt for me,” he said while I got into his car. He didn’t speak to me about my schedule that night. He told me about his ex-wife, his kids, and the nanny he cheated on his wife with. He told me that I was young and had never experienced a real man. When he dropped me off, he said “You’re not even going to invite me in? How rude.” Worried about my job, I responded, “Oh, would you like to come in?” We were in the elevator as I texted my roommate, “We’re coming up, be in the kitchen so I’m not alone with him,” and she responded, “Lexi, I just left the house.” We went into my living room where he climbed on top of me and started kissing me. He was 43 years old. I can’t even try to describe the feeling I had in my throat as I felt his tongue in my mouth. After a few minutes, I said that I had to wake up early tomorrow and that he should go. Reluctantly, he left. The next day at work he called me into his office saying he had my new schedule, and I walked into a pitch-black room. He said, “I just wanted to get some time with you.” I quit a few days later.

Eventually, I stumbled across a YouTube video on relationships with psychopaths. My eyes were glued to the screen, clinging to every word as she flawlessly described my first love. My breaths becoming heavier as she explained the hows and the whys. The questions I had asked repeatedly in my head for years. She talked about how they choose their victims, and patterns in their mannerisms. I truly UNDERSTOOD for the first time that it was not my fault. In that moment, I felt my soul clinging to my body for the first time, its hands grasping at the insides of my skin, holding me with pinching fingers in a silent promise to never let go. It was in that moment that I let go of my responsibility to men and took on a new responsibility. Myself. 

I found a lot of my power through learning. I came into college majoring in psychology with an interest in behavioral neuroscience as well as a minor in women, gender, and sexuality studies. I hoped to one day focus on the neurological underpinnings of psychopathy. My mission was to uncover irrefutable proof that abusive behaviors are unrelated to the victims themselves. Unfortunately, awareness alone cannot shield you from the harm inflicted upon you; it merely has the power to shape your responses.

I no longer fear people. I am not scared because everything that I would be scared of has already happened to me. There is a certain comfort in the aftermath of abuse – a comfort that stems from knowing that there is nothing you can’t get through. Abuse doesn't simply vanish; it lingers, leaving its mark. I deal with obsessive guilt, replaying daily scenarios in my mind, and endlessly questioning what I could have done differently to the point where I could barely leave my home out of fear that I would make a mistake. Yes, lessons were learned and at one point I would have said I was grateful for my experiences, but now, I do not. I believe that the growth I've achieved could have been attained on my own, without the help of my abusers. I now stand, not as a product of my abusers' influence, but as a testament to my own strength and resilience.

About the Author

Alexandria is a fifth-year psychology student at Northeastern University with minors in English and women, gender, and sexuality studies. After college, she aspires to go to law school and seeks to use writing as a powerful tool for advocacy and change.

By Ella

The luminous natural light shining into my all-white shower illuminates a heavenly gaze onto my bleeding, blistered body. I wouldn’t consider myself particularly religious, but today I'm certain there's a divine presence holding me upright as I feebly fight for stability. Today my open wounds leave a sea of crimson dancing down the drain, my neck frozen straight to combat the blaring whiplash. 

Today I believe in God.

Earlier, a pouring shower of glass had left me concussed and upside down. It was a tranquil roller-coaster ride, a seemingly peaceful experience as my body ascended and accepted the force. Constantly burdened by an intrusive inner monologue, I was surprisingly soothed by the sharp dissociation. It was a near-death car crash, but somehow one of the most relaxing experiences of my life.   

My life had been spared by a 1999 tow truck housing an unbelievably rare interior design that ultimately guarded my life. The sight of the truck alone was enough to send people at the scene into hysterics. I gather when a car looks like that, you are supposed to die. The eccentric EMT called it a miracle. God called it a favor. I call it my most bittersweet memory. 

Vacantly wiping the blood away, I am surreally empty as I shower. This is new for me, the chronic overthinker staring into the distance with sullen eyes. I hyper-fixate on the ceiling as I shower, void of meaning. Without any medication in my system, my dazed reflection acts as the most potent narcotic.

It's bewildering how fast life ebbs and flows. Just a month earlier, the suffocatingly humid air of Miami smelled like success and teen spirit. Up until a few days before, my mother had ardently refused to let me go, exclaiming how ridiculous and unsafe it was. We were 17. I agreed, even then. But I craved it, longing for the exhilaration of me and my friends dancing in the sun and acting older than we actually were. It all seemed so grand.

Suddenly, my friends were discussing reservations at trendy restaurants without a mention of going anywhere other than Miami. That must be why my mother caved on her own accord, quietly pulling up the airfare for that weekend while weakly uttering “I don’t want you to miss out”. Quickly, all my savings were down the drain, and I was packing my yellow polka-dot bikini in a small, battered carry-on.

On our first night there, we shuffled back to our hotel rooms eager to prolong the night. We energetically jumped on the massive white bed in our way-too-short dresses. My head hit the ceiling, and I rolled around laughing as background music roared on. It felt like a scene from an unrealistic teen drama, and I joyfully thanked my lucky stars I had made it. 

After everyone went back to their room, I got in bed eager to doze off. It was close to 2 AM, and I stared vacantly into the darkness to calm my body. My inner monologue flowed relentlessly, only exciting my nerves to stay up. There was a creeping void inside my stomach that only seemed to grow as it got later and later. My strange uneasiness was only fueled as I began to fixate on time, physically feeling as if I was going to run out of seconds. Or out of air, as my chest tightened and the butterflies in my stomach sharpened their wings. I felt viciously hot as every manual breath stung my diaphragm. The heaviness weighing on me forced me to take large gulps, choking to find whatever air was left in my lungs. Laying immobile, I silently prayed for my well-being. 

My breath finally came back after what felt like hours, and I looked at the time. It was 4:37 AM. I then laid awake all night in an anxious, stomach-severing, pit of nerves. Finally, when the sun rose, I got out of bed nonchalantly to put on sunscreen and my yellow polka-dot bikini. I had just had my first panic attack (and certainly not my last) in a beautiful hotel room overlooking the beach. Yawning profusely from my lack of sleep, I didn’t tell anyone about my nightmare of a night. I assured myself nothing was wrong while consciously sequestering any sentiments of anxiety. Miami was picture-perfect, and I tried to be as well. 

Later that month, my body felt uneasy during the most celebratory of times. When I blew out my candles on my 18th birthday cake, my dad reminded me to “make a wish!” Every year I wished for the happiness and health of me and my loved ones, taking a moment to relish the warmth of those around me. But this year, my mood regressed sourly as I thought about the ways happiness and especially health can regress. An intrusive chain of thoughts urged me to think about growing older and the possibility of death waiting mercilessly around the corner. 

As I eat my chocolate cake, that familiar pit-like sensation returns to my stomach. I try to push it to the deepest parts of my being, wondering if it's inherently selfish to ruin your own happiness. 

It was in these moments that I always seemed to think of God the most, specifically when I needed something. I was the equivalent of that friend who only comes around when she has a bad breakup, forgetting about you when there's a new swooning love interest. I now think I was rather human, which doesn’t equate to a “get out of jail free card” but is certainly worth something.  

A month later, my parents prayed when I was in the hospital. I wonder if the people on the street had also prayed when they saw the utter collapse of the 1999 pickup truck. Even if they were selfless in their desires, they still wanted something. It's rather ironic. When my cuts sting in the shower, I do not feel the sentiment of needing anything. I grasp desperately for emotion or even words, without tangibly holding anything. 

And there it is. A subtle juxtaposition to all that I have ever known; a dissonance in the looming anxiety that had gradually piled up. Like a weatherman, I had lived life constantly dreading the storm, overanalyzing every mere drizzle of rain. But now it had rained and poured, and I was burnt out from caring at all. 

My minimal stability is jolted by a robust tap on the shower curtain. In my drowsy state, I cannot comprehend why my kitten is staring into my shower with bright blue eyes. My cat enhances my sense of disbelief, perching herself on the shower ledge and focusing her gaze on me. 

All of a sudden, I can't look away from the disturbing pool of blood juxtaposing the beautiful white marble shower. I realize the severity of the situation, the bitter truth separating before and after. I realize I'm in the after, because my body is gashed and there's broken glass everywhere. 

Upon seeing my kitten in the shower there's a silent catharsis. The shower covers the sounds as I begin to cry, naked and exposed. As cold tears pour, I mourn all the moments I shed away in worry. As if accepting my survival could take back all my previous doubts, I feel somber clarity. The anxiety reaching its peak throughout the last few months suddenly halts, seeming trivial now in the scope of things. 

I ask myself what it was all for, the stream of constant anxiety that has progressively plagued me. Now the coin had flipped, and my worst anxieties had come true. What now? Will my fear of everything rise like the tide, or will it flow back and retreat? 

 I’m not sure who I am with a constant rain cloud hanging over me. Maybe I'm lucky enough to have things worth missing, desires worth yearning for. I suddenly noticed my cat’s brown fur was soaked from the shower’s stream. She stays put, a strange phenomenon for felines who are typically hydrophobic. Somehow this validates that there's a plan for me, more life left ahead.

I think about God and all those times I anxiously craved something beyond minor. It's funny now as I delicately extract glass shards out of my hair. I wonder how many people prayed in the hospital at the same time as my parents. I wonder if those prayers were more genuine, more emotionally volatile than the ones in church.  

I implore myself to be better than I have been as the cold water sinks deeper into my open cuts. I reminisce on everything I'm grateful for, everything that has continuously gone right when I worried it wouldn't. At this very moment, I don’t feel like I need anything, for I am overcome by gratitude. I simply put my face under the cold tap to reinvigorate my feeling of being alive.   

Then, I put my hands together because this seems like a good time to pray. 

 About the Author

Ella is a third-year student at Northeastern University, studying psychology and behavioral neuroscience. In her free time, she is a part of numerous research groups on campus and loves creative writing and fictional storytelling.

Photo credit: Joy Stamp

By Val Walker

Could anything make you feel lonelier than having no one to take you home after a medical procedure? Before the day of the procedure, single older adults scramble to find a ride for their colonoscopy or endoscopy, asking friends, neighbors, family members, colleagues, church members—you essentially go begging—but no one can be pinned down to pick you up. These days, medical centers have moved as much of their services to outpatient procedures and day surgeries where patients are moved through the pipes like an assembly line. So, they expect their patients to have a trusted ride at the ready to sign off so they can whisk you through and release you to someone “responsible.” This is especially tricky when a patient has anesthesia and cannot simply take an Uber or hire a ride service, or use public transportation, or use the volunteer ride services that senior centers offer.

For single older adults like me, I had to reschedule my endoscopy four times because my friend or neighbor or chosen ride fell through at the last minute. I was given hurried, dismissive advice by my medical center to just call my local senior center or call a medical transport service. Sometimes these services had been discontinued, or did not qualify, or cost more than $300 for a ride. There is a pervasive misconception that any older adult can simply call their local senior center or grab a volunteer from church for a ride to a medical appointment. But I told everyone who so casually handed me lists of ride services that a procedure involving anesthesia in an outpatient facility would not accept a driver from any organization due to liability concerns.

Some of us stranded seniors who’ve fallen through these cracks have flat out given up on bothering to get ourselves the care we need.

This flakiness and chaos with finding reliable rides caused my biopsy to be delayed for four months. I was feeling more and more frustrated and worried, but far worse, I was falling into a pit of feeling lonelier, downright abandoned (does anyone give a rat’s ass?) that no one could keep their commitment or go out of their way to help me get that long-overdue biopsy. Did my friends or anyone care that abnormal cells were already growing in those membranes? I already had thyroid cancer four years ago and I sorely needed this next biopsy for my Barrett’s esophagus and abnormal cell changes in the membranes of my throat. But I could find no one, after a good 60 attempts to find people for a ride. Sure, I was “well-connected,” but could I count on anyone? Finally, I resorted to scheduling a home health agency and having to pay $120 just for a ride home (and that’s pretty cheap these days). Paying for this certainly meant I had to go without other basic needs (had to use the food pantry).

Not only is this predicament unfair financially and medically for isolated adults who are forced to delay important, perhaps life-saving procedures—it hurts us most in our hearts and makes us feel uncared for and unloved. Yes, I am being emotional here, but I believe most of my fellow solo agers out there on their own fighting for basic health care feel just as lonely and abandoned. And to tell the truth, I’m sure I’m not the only one who was haunted by an inner demon nagging at them saying, “So who cares if these cells turn into cancer—maybe it’s time to get out of Dodge.”

And yet, with just a little more help from those friends around us, an early cancer can be spotted by one single act of kindness—a ride home from an endoscopy.

So, I’ve said it: Our health care system can make solo agers feel even lonelier when left to their own devices to scrounge up someone to drive them home from an overdue biopsy. And if we cannot find anyone available or willing without having to pay for them to help us, our sense of isolation and abandonment might weaken our will to keep fighting—and our will to live.

That’s what social isolation really means. That’s one way it can kill us. What do you think?

Val Walker is a contributing blogger for Psychology Today and the author of 400 Friends and No One to Call, released in 2020 with Central Recovery Press. Her first book, The Art of Comforting (Penguin/Random House, 2010), won the Nautilus Book award and was recommended by the Boston Public Health Commission as a guide for families impacted by the Boston Marathon Bombing. Val received her MS in rehabilitation counseling from Virginia Commonwealth University and is a rehabilitation consultant, speaker, and educator. Her articles and Q&As have appeared in AARP, Caregiver Space, Babyboomer.com, Caregiver Solutions, Time, Good Housekeeping, Coping with Cancer, Boston Globe Magazine, Belief Net, Marie Claire, and Sweety High. Keep up with Val at www.ValWalkerAuthor.com

By Rebecca Fogg

It all started so early that I didn’t question it–my body yelling that something was terribly wrong with me or my life, even when it wasn’t. A chest cramp and wave of chills as a child, when I fibbed to a babysitter about my bedtime and got away with it. Spontaneous sobbing fits so immersive as a teenager that, driving myself to school, I had to pull off the road because I couldn’t see. Vigilance in romantic relationships as a young adult, analyzing every moment of tension for a partner’s potential indifference or disrespect (which would feel dangerous) as if scanning for cancer. Gut-knotting anxiety in business on the few occasions I met a no-win political situation but felt as though my whole future depended on mastering it.

I never spoke to my parents about my youthful somatic suffering, or to close friends later on. Why would you mention that you breathed air, or put one foot in front of the other to walk? If it was in my nature, then nobody could do anything about it. If it wasn’t, then it was my problem to solve. I could still experience the thrills of love, joy, learning, helping, and achieving, and frequently did. But they often felt snatched, like luxury items I’d smuggled past a dozing guard who’d awake at any moment and chase after me. Finally, in my early thirties, some especially observant friends nudged me toward therapy, and I learned to recognize and challenge distorted thoughts that caused me pain. Life improved significantly.

Then in 2006, my right (dominant) hand was partially amputated in a midnight explosion in my Brooklyn apartment, where I lived alone. Eight tendons, an artery, and the main nerve of the hand were severed, requiring extensive surgical repair at Bellevue Hospital in Manhattan. Afterward, doctors couldn’t tell me how useful my repaired hand would be, because so much could still go wrong in the healing process. Exhausted, disabled, in pain, and mentally muddled by pain medication, I couldn’t manage self-care, house care, and a mountain of accident-related paperwork myself; so my family stepped in for a few weeks, then an army of friends took over until the worst was behind me.

I was deeply grateful for, and cheered by, the love and assistance I received. But I also felt profoundly lonely, alienated from my self and life, and grief-stricken by unnamable loss. My trauma expressed itself in spontaneous sobbing fits, violent dreams, and intrusive thoughts about the September 11th terrorist attacks (which I’d also survived, as I worked just across the street from Ground Zero). Ultimately, physical recovery required three months out of work, several hundred hours of occupational therapy, and 45 hospital visits that year. I muscled through it by continuing with psychotherapy, speaking regularly to loved ones, and studying the science of trauma and healing, which intrigued and inspired me and gave me a sense of purpose and progress. By the one-year anniversary of the accident, I had returned to the exact same life I’d been living before it and thought I had moved beyond the trauma. I felt (and still feel) changed for the better–closer to loved ones, more empathetic and ambitious for social impact; and the experience brought two new passions into my life: writing and science. My therapist and I decided our work together was finished.

Over a decade later, I began writing a book about my injury and recovery, and the science behind it–from the brain’s fight-flight program (which enabled me to rescue myself) and the evolution of reconstructive surgery over thousands of years of war; to peripheral nerve regeneration and neuroplasticity, which made my extensively-repaired hand useful again. I titled the book Beautiful Trauma, to reflect the unexpected coexistence of the wonderful, and the terrible, in my experience.

Living alone in 2020-21, as I had been at the time of the accident, I wrote in isolation for hundreds of days while COVID locked down the planet, and the US burned with racial injustice and political corruption. Increasingly, waves of irritation, grief, and despair left me gasping for relief, and I considered this span of time a fresh trauma, symptoms of which would surely abate when the pandemic did. But when they continued to flare occasionally even a year after the last COVID restrictions were lifted, it finally occurred to me that I might still have accident-related trauma to process. So after some time seeking the right practitioner, I recently began a course of EMDR (Eye Movement Desensitization and Reprocessing) therapy, which I’d learned about through my book research.

The effects so far have been remarkable. The process has surfaced questions I’ve never contemplated before; and these, in turn, have prompted insights about how old family crises, my accident experience, and my depression/anxiety might be connected–insights that I don’t believe I could have arrived at through any other means. Processing these in the safety of the sessions, I’ve tapped wells of anguish I didn’t know I harbored. Outside the sessions I feel an old vigilance relaxing, surrendering intellectual and emotional bandwidth that I hope I can redirect toward accepting what I can’t change, and pursuing what will enrich my life and that of others. I know that EMDR won’t eradicate stress and sorrow from my life. But based on my experience of it so far, I believe it will help me live with more ease and optimism, as talk therapy did before it.

I find it astonishing that I didn’t consider pursuing trauma-focused therapy until I’d lived almost 20 years post-accident and written a whole book on trauma. But then, trauma weaves itself into one’s full-body experience in subtle ways that can be difficult to recognize, or may only be visible over time as patterns of suffering emerge. I also needed to sit with my new research knowledge for a while before understanding that I could be suffering the effects of trauma despite not meeting the precise clinical criteria for PTSD and that EMDR wasn’t just for soldiers.

And, I suspect that the way we talk about psychological resilience as a society also plays a role. It’s often characterized as a linear, time-bound process; and admired, almost as if it were the product of good character, rather than of innumerable, interacting bio-psycho-social factors, many beyond our knowledge or control. As such, you work hard at recovery, you progressively improve, you finally “get over” the trauma–and you’re a hero! Who wouldn’t want to live that story arc? I needed to believe it in the months following the accident, while I exhausted myself every day, physically and psychologically, grappling with the challenges of my upsetting “new normal.” But months later, as I regained health and hand function, and thrived otherwise as well, the powerful narrative may have distracted me from psychological healing yet to do.

What is resilience, then, if not getting “over” or “past” life’s most painful experiences? I see it as a life-long process of learning to live with energy and optimism, despite intimate knowledge of our fragility and mortality. It can be grueling work, requiring substantial social and professional support to which I’d wish everyone adequate access. But it offers freedom from the depleting pain of resisting the human condition and the lost opportunity that results from not seeing the facts of our lives as they are. And there can be beauty in it–like the compassion of helpers, the wisdom we gain through coping that we pass on to others, the doors opened to new experiences and relationships to be cherished. Resilience is being alive.

In 2008, Rebecca Fogg walked away from her New York life and successful career in financial services to move to London, where she co-founded the Institute of Pre-Hospital Care at London’s Air Ambulance and continues to work, write, and learn Scottish fiddle. A graduate of Yale University and The Harvard Business School, she spent five years (2014-2019) researching and writing about healthcare with renowned Harvard Professor Clayton Christensen, author of The Theory of Disruptive Innovation. BEAUTIFUL TRAUMA: An Explosion, an Obsession, and a New Leases on Life (Avery, Penguin Random House), is Fogg’s first book. It was awarded the 1029 Royal Society of Literature Giles St. Aubyn Judge’s Special Commendation for work in progress.

By Galen Tinder

I awoke one morning two weeks away from completing my last year of graduate school, the morning after spending a pleasant Saturday day researching in the library, and it was there. I could tell before I raised my head from the pillow. I didn’t know what “it” was exactly—some combination of hyper-anxiety and primal dread. 

When I stood up, the room—a small dorm habitat—wheeled around me ominously, like an out-of-balance carousel trying to spill me onto the ground. I sat back down. When I glanced tentatively at yesterday’s newspaper sitting at the foot of my bed, images pulsed and swirled themselves into a chaotic panorama of headlines, photos, and text. I was suddenly aware that my heart was beating fast and loud. Several minutes later, anxiety pushed me out the door into the hallway. It was a Sunday, so few other students were around. I paced up and down the hall, back and forth, passing the day in frightened perambulation. I did the same thing the next day, and the next—it seemed the only way to keep panic from engulfing me. 

I eked out my last days of school, but despite my effort to act and appear normal, and my evasions of human interaction, my friends caught on that something was amiss and asked what was going on. For the first of many times over the next nearly four decades, I was confronted with one of the isolating curses of severe depression—its inexplicability to the uninitiated. It is so outside the realm of ordinary human experience as to be indescribable. Acute depression is not like being sad in the ways nearly all of us are at times, nor is it like feeling out of sorts. If sadness looks like a harmless gecko, severe depression looms like an all-devouring Tyrannosaurus rex. 

After four months, the “it” left as mysteriously as it had come. I was so relieved that I chalked up the whole ghastly business to an idiopathic anomaly. I moved on with my life, giving it no more thought.  

But six years later it came back. This time, I was prevailed on by people and circumstances to get medical help. My primary care physician referred me to a local psychiatrist of his acquaintance, one of a number I would consult over the coming decades. It was from this first psychiatrist that I first heard words that, when strung together, went like this: severe clinical, recurrent, treatment resistant, unipolar depression of the anxious (in distinction from enervating) type. Eventually I also heard the term “endogenous,” meaning that in my case the depression’s etiology was my inner chemistry rather than problematic external circumstances. 

When my second episode struck, I was several years into my first “real” job, meaning the one for which I had been educated and trained. Eventually, I could not keep up with my work and took a couple weeks off to fine-tune my medications—I stopped two and started two others. This episode also ended abruptly after several months. My psychiatrist at the time warned me that a person who has two bouts of clinical depression has a 50% chance or better of further episodes. Sure enough, after the second attack, I had six or seven more episodes over the next 28 years. Most lasted four or five months, limited, perhaps, by my ever-rotating amalgam of medications. 

During my career with depression, I have taken more medications and combinations of medications than I can remember. I began with SSRIs and later SNRIs like Effexor, atypicals like Wellbutrin, and an MAO inhibitor, Parnate. My current doctor has tested my genes in the hope of identifying chemical matches with particular medications, but in my case, none turned up. 

I have been hospitalized four times, once for suicidal ideation. People say, in a macabre joke, that a hospital is no fit place for sick people, and this was true for me. Though “safe,” I always felt worse institutionalized than at home. Ten years ago, I had electroconvulsive therapy (ECT), to no avail.      

My inability to describe to others what acute depression feels like has been frustrating and magnified by aloneness. I often saw in the expressions of others their wondering about the characterological weaknesses that underlay my paralysis. I sometimes wondered this myself, and felt shame at being undone by this invisible ailment that was so hard to treat and seemingly impossible to prevent. Today, I can in some measure empathize with people afflicted with auto-immune disorders that are so hard to diagnose and treat and impossible to see.

Occasionally people ask me what it feels like to be depressed. I respond that depression, at least for me, doesn’t have feelings. It crushes them. I can’t, for example, say that depression makes me feel sad or frustrated. Severe depression crushes ordinary human emotions, the ones necessary to our sense of humanity, beneath the fist of terror and despair. It is not even that depression leads to despair. It is itself despair. Desperate for an image, I once suggested to an inquisitive friend that he imagine himself jumping off a ten story building, and landing feet and legs first on the concrete below. I asked him to conjure the agony of his feet and legs fracturing into uncountable shards of bone and shreds of sinew. This is how, I said, my brain hurts. 

In one of the most eloquent books about depression ever written, the autobiographical Darkness Visible: A Memoir of Madness, 20th century novelist William Styron brings his literary gifts to a description of his own depression. He calls the term “depression” a “slug” of a word that has slithered its way into our language to describe a devastating  cataclysm. Styron acknowledges the limitations of language to describe an experience incommunicable to those not possessed. He suggests the term “brainstorm.” My own meteorological conjuring is an F-5 tornado laying waste a home, a neighborhood, and a town, leaving no signs of life on the horizons.  

Sometimes called a slim tour-de-force, Styron’s book first appeared as a long essay in a 1983 issue of Vanity Fair before it was issued as a book. Soon after it came out, I bought a copy for my wife and in years since have referred people to both the essay, which can be accessed online, and the book. In either rendition, it can be read in a couple hours. Styron writes that “the pain of severe depression is quite unimaginable to those who have not suffered it, and it kills in many instances because its anguish can no longer be borne.” I first read this passage 20 years ago, when I was in between episodes. I began to weep because for the first time I knew that there was another human being who knew what I felt like when in the grip. 

Severe depression scares people and even those closest to it don’t know how to help their loved one to feel better. They sense that there is nothing they can say, but out of their own pain and the frustration of helplessness may remark, “Just hang in there…”; “Eventually it will get better…”; “Have you tried positive affirmations?” These efforts at comfort and exhortation at best make me feel misunderstood and more isolated. The distinguished educator Parker Palmer relates that when he was depressed people tried to comfort him with assurance of his eventual recovery. But the person who brought him solace was an old friend who came over every day to massage his feet. Most days, nothing was said between the two men.   

After my second episode of depression, I began to research the nature, causes, and available treatments. After 30 years, I have kept at it but no longer anticipate making any dramatic discoveries. For decades we have thought that an insufficiency of neurotransmitters causes depression; nowadays we are not so sure. A diminishment of brain chemicals often accompanies depression, but correlation is not causation. In recent research a significant percentage of those helped by the medication they were given turned out to be ingesting a placebo. These days most specialists acknowledge that we don’t know what causes depression for a given person, though genetics and early childhood abuse (I qualify for the first, but not the second) can play a role.

For decades I got depressed, then got better, got depressed, got better, and so on without gaining any wisdom about my condition or myself. I was convinced I was a case of defective biology and messed up brain chemicals. My worst episode began nine years ago and lasted eleven months. For much of the time I was confined to bed. I came up with a coping mechanism that sounds odd, but kept me alive. Every morning around 11:00am I decided not to kill myself that day. I then immediately reassured  myself that tomorrow was another day on which I could choose differently. Then the next morning around 11:00 I made the same decision followed by the same reassurance. In this manner I kept myself alive day by day, for months. Oddly, every morning I would feel girded by Camus’ statement that the only serious philosophical question is that of suicide.

After seven months, the psychiatrist I was seeing, who was the kindest of them all, told me regretfully that she didn’t know what more she could do for me. For some reason, her acknowledgement energized me enough so that I drove home and opened Google. In a few days I turned up the name of a physician who practices what is sometimes called biopsychiatry. This means, in part, that the doctor is skilled in the efficacious mixing of medications and supplements. A cocktail, as it is called.

After taking my history the psychiatrist said that while I had gone through a rough time, she was confident that she could help me get better. I was surprised how much her statement lifted my morale. After two months under her care, I recovered. Aside from a minor blip now and again, I have been well for the last eight years. 

What does this all mean, this episodic career in depression? Perhaps there are two questions here, the first being what does it mean for me, for who I have been and who I am today. The broader question is that of what suffering means for all of us, for those who have walked a far harder road than have I. Is it all meaningless? Does it have a purpose, if not always then sometimes?

For most of my life, my episodes of depression, lasting, until the final one, an average of five months, have seemed unrelated to my non-depressed life. They came spontaneously and left the same way, unconnected with life events, my pre and post psychological condition, never caused, so far as I could tell, by emotional stress. So they struck me as biochemical eruptions over which I had no control. They were attacks disembodied from my “normal” life. When they left, I resumed this life until the next time.

Today I doubt it is so simple. I mentioned earlier that depression crushes feelings like happiness, sadness, empathy, and vulnerability. Recently I have realized that when I emerged from a depression, these emotions stayed crushed. Perhaps I thought I could avoid further misery by not feeling, by retracting into myself, taking my right brain off line, never developing a capacity for authentic self-reflection and vulnerability with myself. Tongue not entirely in cheek, a friend once diagnosed me as suffering from habitual and excessive analyticity. I now think that this quality may have been both a consequence of my depressions and a maladroit defense against more of them in the future.

In any event, it has struck me over the last several years that a life of self-retracted feelings has not served me well as either a depression dampener or a way to live. I have gradually taken hold of a different kind of living marked by feelings of sorrow, happiness, regret, reformation, vulnerability, empathy. I don’t know how this has happened, but a different way of living has laid firm hold of me and blessed me, at the age of nearly 70, with new vistas of rich experience. Is this in some way a mysterious gift of depression? I would sure like to figure it out, but doubt I will. 

I was recently trying to characterize to a friend the changes I have experienced and my desire to understand their etiology. When I finally stopped talking, she smiled, cocked her head, and said “Who would have thunk?” Perhaps this says enough, at least for now.

Galen Tinder is retired from a career in counseling and now spends much of his time in the field of narrative studies and practice.

Audio production by Alexandra Salmon

Health Story Collaborative · Storytelling for Health and Justice: Gaynell Fuller

Gaynell contracted COVID-19 in April of 2020 and then dealt with chronic symptoms of extreme fatigue, body aches, and an altered sense of smell for more than a year. Gaynell, a nurse at a long-term rehabilitation facility, feels certain she was exposed to COVID-19 at work. As the facility was hit hard by the virus, many of the other nurses—some sick with it and some afraid of catching it—stopped showing up at work. Gaynell’s responsibilities increased dramatically. She cared for many sick patients and eventually fell ill herself, despite her best efforts to protect herself. When her symptoms made it impossible for her to go back to work, she applied for workers’ compensation, but administrators responded that her illness had been “community acquired” and denied her claim. At the time, Gaynell was raising her twelve-year-old grandson alone. She had bills and rent to pay; she had to put food on the table. Still, in this flawed and deeply unjust system, she was offered no accommodations at work and no financial support. 

“I was never one to just sit back and collect,” said Gaynell. “I have worked since I was thirteen years-old. ”When she finally applied for unemployment, she felt stereotyped as someone trying to take advantage of the system. She was deemed ineligible, and ultimately her case was sent to the fraud department due to confusion over her name. She had applied for unemployment once before, more than twenty years prior, under her married name, and now she was applying under her birth name. She found herself going in circles, dealing with many “nasty” people on the phone and hitting dead ends. The process took persistence, not to mention time and money. She was required to send for her birth certificate as proof. “It’s not possible for everyone to trace their roots,” she said, “and forget about being undocumented.” Ultimately, it took help from a state legislator to finally get her claim approved. Gaynell recognizes that her education and connections in the community helped her to navigate the system, and she is very clear on the fact that many people in her community don’t have such resources. Gaynell isn’t afraid to be assertive, but still, the process was exhausting, and she nearly gave up many times. Her story underlines how the impacts of entrenched racism—poverty, lack of access to education, and bias in the criminal justice system, just to name a few—amplifies the dire impact of COVID-19 on people of color. 

***Adapted from The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma, and Loss. By Annie Brewster and Rachel Zimmerman. 2021. 

By Susan Epstein

Interesting, the different paths life offers, the lessons learned, and the irony of it all. A lifetime of experiences cannot always prepare you for what’s ahead, but the hope is you will have learned enough strategies to deal with whatever comes your way. And then something like lung cancer hits.

When you are faced with a dreadful diagnosis, what is there to fight back with? There was no point in falling into “Why me?” I had to go deep, all the way back to an athletic career that I once cherished, but then abruptly ended, leaving me with a sense of failure and loss. Competitive running had been my life, until it wasn’t.

1986

The summer of ’86 was going to be the first time I had taken a trip to Europe if I made the cut. I had qualified to run the10,000 meters (6.2 miles) track event at the prestigious Bislett Games in Oslo, Norway but needed the funds to cover the travel. New Balance, my sponsor of eight years, was eager for me to compete through the summer and agreed to send me along.

 At midnight, under bright skies in this Norwegian town, I ran twenty-five laps around the 400-meter track in 33:12, far from my personal best, but a solid performance considering this was my first track race overseas. Ingrid Kristiansen, a native, lapped the entire field, setting a world record in 30:13.  The top Americans would be flying out the next day for Moscow to compete in the inaugural Goodwill Games, created by the cable television tycoon, Ted Turner. Mr. Turner was making a dream come true after the US boycott of the 1980 Olympic Games. He organized the event as a way to ease tensions during the Cold War through friendly athletic competition between nations. This would be the first time in 11 years that athletes from the Soviet Union and the United States competed on the same playing ground in a major international event.

Having placed 5th at our US National Championships, I was not considered for the team traveling to Russia. As timing had it though, Mr. Turner wanted to broaden the women’s field and was looking for an athlete to make the trip to Red Square. I was respected as a marathon runner, ranked 10th in the world in 1983, just missing a spot on the ’84 Olympic Team. The disappointment was tremendous, but I finally bounced back in 1985 placing 5th at the New York City Marathon, crossing the finish line as the first American female. My agent passed my name on to Mr. Turner knowing I would be in Europe, and the deal was sealed. The only catch, I would be running the 5000 meters (3.1 miles) a mere sprint for someone more accustomed to the 26-mile marathon event. Still, I was thrilled to be wearing USA across my chest.

Stepping out on the track, on a hot July evening in the packed Olympic stadium, I watched the other runners in awe as they went through their pre-race routines. I was overcome by emotion knowing that I was the 4th American woman representing our country. The horn sounded and the competitors lined up on the eight-lane track, 20 of the fastest women in the world. Each runner was introduced in front of the crowd of 100,000 as their respective country flag was raised. The stars and stripes directly in my view, I thought to myself, “This is my Olympics.” The gun fires and the runners are bunched tightly. Running somewhere in the middle of the pack, I came through the first mile in 4:51, astounding since my best open mile ever was 4:48. I didn’t feel anything at first, just concentrated on pace and strategy to avoid being tripped. The field began to spread out with the Russians blocking Cindy Bremser, our top US entry, from taking the lead. My only goal was to run my personal record (PR) and finish strongly. A good friend of mine from Belgium, Ria Van Landeghem, a fellow marathoner, was just a few strides in front of me. I was struggling to stay with her, sweat stinging my eyes, legs dead weight, all side effects from running that first mile too fast.

 My instincts were to push through the fatigue, but my body rebelled. I remember thinking it was so hot, hotter than the hardest training days in Dallas, Texas, and knew this was not a good sign. With all the excitement up front, the two Russians beating Cindy by eight seconds, I was able to finish the race without much attention to the back of the pack. I finished in a respectable 8th place but walked off the track bathed in fatigue with feelings of failure.

On an easy five-mile morning run the following day, Ria asked what happened to me; she assumed I was going to pass her on the final lap thinking I had greater leg speed. I laughed…leg speed, more like dead legs! I shrugged it off and attributed it to poor pacing. I continued the tour from Birmingham, England to Wales, to Paris and back to London, racing in shorter-distance events of 1500 and 3000 meters. My mediocre performances along the way caused me to curtail my track season and head back home to our U.S. training facility in Dallas. I would undergo numerous physiological tests at the Human Performance Lab, led by my coach Robert Vaughan, Ph.D. The usual battery of exercise tests and blood values were taken at various workloads. The test results revealed my season was over. In exercise physiology terms I had “over-trained.” This was a common conclusion when athletes started performing poorly without any concrete explanation or solid evidence to support. The treatment: easy running and no competition for several months. The setback brought back lingering negative thoughts causing me to question the path my running career had taken me.

2000

 Much had been accomplished since my departure from the track & field world, leaving behind the highs and the lows of a once so important athletic career. A graduate degree in exercise physiology was a natural progression after retirement, but then that subject too, became all too consuming. I continued my academic journey and completed a master’s degree in speech pathology, a field I thought would take me far away from the study of diet and exercise. During the years that followed, I maintained my weight to a more ideal standard, exercised recreationally learning tennis for the first time, and took stock in relationships with family and friends.

 After settling in Buffalo, New York, where I raised two amazing daughters, competitive running had taken a permanent back seat. A career in neuro-rehabilitation opened the door to the fascinating world of the brain, this organ inside our head that controls all bodily functions of a human being. I had totally underestimated this complex structure which controls thought, memory, emotion, touch, motor skills, vision, breathing, temperature, hunger, and every part of our being. After solely depending on my body for running, I was surprised how I took my brain for granted. Joining the neurology team at Buffalo General Hospital changed that notion. Of course, speech and language skills are housed in the brain, but healthy living had to be part of the prescription as well. I began to combine health behaviors, such as sorting fruits and vegetables, with cognitive retraining. Preventative health behaviors became as important as the speech therapy session. My motivation came from the devastation I saw in my patients’ lives following a stroke or those living with multiple sclerosis, or Parkinson’s disease. Every aspect of a person’s being was affected. Many lost their vocation, their ability to communicate, and much of their livelihood.

 The department of neurology, newly named the Jacobs Neurological Institute (JNI), became the forerunner in using a wellness model for treatment instead of the traditional disease model. While the scientists were at work developing treatments and cures, my job was to make each patient healthier to prevent secondary disease, such as cancer, stroke, or heart disease. However, quality of life (QOL) should be the focus of all intervention. Then again, what does quality of life look like exactly? I certainly had learned a great deal after surrendering to the solitary life of an elite athlete and sought out to develop a doable program for people to find happiness and life satisfaction through adopting a menu of healthy behaviors. Diet and exercise, the usual prescription, had to be tailored differently for those with compromised health, limited mobility, and low motivation. Hence, I developed the LIFE program (Lifestyle, Independence, Fitness, and Energy); a simple can-do approach to regaining confidence and satisfaction living with a new normal. Due to the success of the 12-week program, I went on to author a book based on the foundations. The LIFE Program for MS was published by Oxford University Press in 2009. The irony…the LIFE program was to become the “new normal” for me.

 2020

 NSCLC (non-small cell lung cancer) Adenocarcinoma of the lung was the diagnosis. NSCLC is a disease in which malignant (cancer) cells form in the tissues of the lung, usually found in smokers, but can occur in non-smokers as well. With disbelief, I rehearsed in my head that lung cancer was not supposed to strike a former world-class runner, one who dedicated her career to helping people learn to live well despite chronic disease. I was dumbfounded to say the least. The mass had been growing for five years, ignored by several physicians, when in fact some indication of a problem was noted on two CAT Scans taken in 2015; but “I looked so good.” Ironically, I could still run, play tennis, and remain physically active, all of which disguised the illness. Finally, the medical treatment: surgical removal of the entire lower lobe of my right lung, followed by chemotherapy. But the “QOL” remedy was totally in my hands.

 2023

 I couldn’t figure out where I was going with this story until today, when I was playing tennis with some great gals. It was just one of those days where my double’s partner and I played well coming from behind to win. Regardless of the victory, we were doubled over with laughter just enjoying ourselves, not taking the game too seriously. My lung cancer has come back, despite my optimism and healthy living. However, my “QOL” remedy is stronger than ever, and will again defeat the disease. What have I learned since letting go of my singular life as an athlete? The crucial need to build healthy behaviors that enhance one’s happiness and life satisfaction. It is simply finding the laughter and joy in friendships. Of course, there’s more to my recipe for living with Cancer and I attribute this newfound strength to the life I rebuilt after defeat on the playing field. The 3-F’s…faith, family, and friends are the basic ingredients, and then you add service to others, add a touch of intellectual stimulation, some musical notes from my choir, and yes, healthy eating and exercise. And perhaps a glass of wine or two. There you have it, my personal recipe.

Sue J. King Epstein is a native of Birmingham, Alabama and now calls Western New York her home. She is a Wellness Strategist, educator, author, and mother of two extraordinary daughters.

Listen to a transformative story sharing event, hosted by students from the Harvard Medical School advanced course elective, "Harnessing the Healing Power of Stories: Narrative Theory and Narrative Practice," taught by Annie Brewster and Jonathan Adler of Health Story Collaborative. 

You will hear about the lived experiences of two individuals, one navigating an advanced neurological condition and the other mental illness and substance use.  The third storyteller's story is not featured in this video due to personal privacy preferences, but they are present in the discussion.

View more Healing Story Sessions here.

HMS Stories of Illness and Healing 2023 2 from Health Story Collaborative on Vimeo.

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.