On May 28, students from the Harvard Medical School advanced elective, "Harnessing the Healing Power of Stories: Narrative Theory and Narrative Practice," taught by Dr. Annie Brewster and Dr. Jonathan Adler, hosted an evening of transformative story sharing. Watch a recording of this event to hear about the lived experiences of three individuals navigating health, wellness and life. Their stories transcend illness as a celebration of hope, human resiliency, and dignity.
By James Kraus
I’ve been blessed with excellent, energetic health. As a kid, my parents named me “the explosion on legs.” Although lacking competitive tenacity, I participated in many sports and outdoorsy activities. Most recently, working out regularly, yoga, dance classes, and most enduring of all, bicycling.
I rarely get colds, don’t think I’ve had the flu or Covid. Friends and medical professionals were surprised I’ve never been on medications or hospitalized. I still have my tonsils. I don’t have any allergies. I brag I’ve never thrown up.
At sixty-two, my work was physical: handy man/construction work, large gallery deinstallation/installation, moving/transporting fine art and furniture. I’d often bicycle nearly an hour to jobs with a 30-40lb backpack of tools. Mid-March 2023, I passed a full physical with flying colors. March-April, 2023, I worked 8-12 hours seven-days a week. After which, I was beat. I relaxed and slept like crazy, but never recovered.
Friday, May 5, 2023, while riding my bike to Boston College for my weekly radio show, I couldn’t catch my breath on slight inclines and coasting downhill. Near BC, I confronted the Beacon Street hill paralleling the Boston Marathon landmark, Heartbreak Hill. I couldn’t go on. I managed to walk my bike up the hill and star the show just in time. My voice was faint, raspy. I told listeners about my adventure. Folks posted their concerns. I aired appreciation and terror.
During the show, I scheduled a doctor’s appointment that afternoon. Pedaling to his office, my breathing was worse. A nurse said my vitals were perfect. A young nurse practitioner ordered an EKG - also perfect.
I said I feared cancer. This situation was like nothing I’d experienced. Cancer I knew. Both my parents succumbed to the disease. The NP listed a slew of other possibilities: heart, lungs, thyroid, but ended saying, “When we get older, our organs don’t function like they used to. This could just be a case of getting old.”
I fired off bewildered indignation. How could I go from extreme physical activity and two-weeks later this may be my life. He replied, “It very well could be.”
Monday morning, a nurse called. Severe anemia.
Over the next ten-days, my condition worsened. My third floor apartment was near impossible to reach without breaks. I slept far too much. I became spindly, shaky. White-outs were common. A morning call to my doctor brought orders, “Get a ride to an ER, soon.” At Beth Israel by noon, I was admitted immediately.
Stuck, poked, hooked to sensors and an IV drip, the doctor probed a gloved finger and held it to my face - a dark residue indicated digested blood in my stool. I said it’s cancer. She said she suspected internal bleeding from an ulceration or esophageal tear. Easily fixed. At my age, a common diagnosis. Again, the age thing!
Around midnight, I was transported to the GI unit. Being a life-long loner, a truly single man, the beeping equipment, bright lights, smells, yelling, my roomie’s 24/7 blaring TV, constant required interruptions and tests were overwhelming.
Sustained only on that delightful, salty, citrus colon evacuating beverage I needed to drink every 15 minutes. I got no sleep.
In the morning, I met the wonderful Dr. “Bird” who introduced himself with an adorable lie,
“I’m looking for Mr. Kraus?”
“That’s me, doc.”
“You sure? I’m looking for a 62 year old anemic man. I’d say you look 45 and in good health.”
“That’s so not true but I’ll take it.”
Dr. “Bird” echoed the ER diagnosis; a bleeding ulcer or tear. Again, I said I suspected cancer. He, like my nurses, implored me not to get ahead of myself. “You’re in excellent health and spirit. It’s likely minor. You’ll be home in a few days.”
Two-and-a-half days passed. My bowels never ran clear. Likely a GI tract lined with dried blood. Regardless, a colonoscopy and endoscopy were performed.
Later that day, Dr. Bird returned.
“Ya’ look a little dower doc. What’s up?”
“You were right. You have cancer.”
“No? Really?”
“The endoscopy found an extremely large, oozing, bleeding esophageal mass.”
Instantly, time ground to a crawl. Although in a fog, every sense and detail felt ultra-vivid. I couldn’t fix on any point. Cross-legged on my bed, I rubbed my thighs, rocked back and forth, blurting out a barrage of a lifetime’s questionable, suspect, indulgent behaviors. Dr. “Bird” tenderly suggested avoiding such questions. “No one knows how or why you got cancer.” A CT scan would answer what extent and stage.
Dr. “Bird” left me with sage words, “I know it’s shocking but excellent health masked your illness and excellent health will help you fight this. Also, James, it’s now your time. This is the time for absolute honesty. Stay positive. It’s as powerful as medicine.”
Once alone, I cried intensely fueled by fear, guilt, shame and regret. Projections of my parent’s treatments and (perhaps my own) ugly demises played in my mind. I lamented and rued what was, what may have been and what may never be again.
I halted my three-hour pity party choosing to earnestly meditate. I hadn’t done it in days. Deep breaths summoned the universe’s guidance. The answer. What about those twelve steps that brought nearly 10.5 years of sobriety? Could they help navigate this new disease that indisputably wants me dead?
Step 1: I have cancer. That won’t change. I must manage this new life, treatments, appointments, emotions, who I tell, their reactions. Although powerless over cancer, I had true power in my choices for coping and care.
Step 2: I must trust in life’s generous forces, a power beyond me, to let go of self-will, keep sane, serene, and believe I’m cared for.
Step 3: I turned my will and life over to g_d’s care. I vowed not to play Google doctor. Trust the process. Like “Southie” AA old-timers say, “Yuh right whaya’ otta’ to be, kid.”
Step 4: I must release and resolve resentments against cancer, doctors, the medical field that missed this, fate and, hardest of all, myself for allowing this to happen. Chastising myself or other’s faults helps no one. Grab a feather not a bat.
Step 11: Through prayer and meditation, improve our conscious contact with God.
I recalled in 1981 my father gave me a book while grappling with late-stage Leukemia. Rabbi Harold Kushner’s When Bad Things Happen to Good People.
In 1939, my young father and grandfather fled Nazi occupied Prague. All family that stayed perished. A highly respected genius engineer but a troubled and depressed atheist, my father was regularly lauded as a good honest man. Why did g_d give him cancer while evil people thrive? For that matter, why me?
I found a YouTube video of Kushner speaking in 1984. He said g_d doesn’t play games or push buttons, selecting who’s stricken by illness. G_d does’t test people or give them “only what they can handle.” Nature’s laws don’t recognize good or bad. A rock fell from a mountain and hit me. It doesn’t wait to fall and strike the deserving. This is “unquestionable biology.” NOT g_d’s plan or punishment.
Kushner assured g_d isn’t a genie, slot machine or ATM granting wishes, dispensing jackpot miracles. He declared, “Don’t pray for miracles. They won’t come. But pray for strength and faith and watch miracles happen.”
Step 12: It’s said in AA, application of the first eleven steps brings a spiritual awakening. After walking my diagnosis through the steps, I believe I had another spiritual awakening. I had tools, coping skills. Even a committed loner like me isn’t in this alone. I vowed to strive for positivity. Ask for help. Express sincere interest in those along side me. Hear their stories. If asked, share my story. Stay upbeat. Laugh often. Continue being humorous, trusting, pray, meditate - believe.
I had a plan: Don’t default into self-pity or obsesses over myself and situation. Accept the staggering vulnerability, my neediness and the challenge of admitting my condition to others. My fear of being seen as a vicim, sick and dying.
For two days, I felt upbeat, buoyant. Dr. “Bird” arrived with my CT scan results. I anticipated good news.
I couldn’t have been more wrong. Stage IV esophageal cancer. Highly metastatic in my liver, affecting several lymph nodes and innumerable tiny nodules on my lungs. I was gone. Unmoored. A million miles from shore. Lost at sea.
Tears rained down. I asked Dr. “Bird” to see the scan, situated backward on a chair - shins on the seat, arms propped on the back, rocking in a weird genuflection. I peered at the computer monitor. We took a frightening, ugly voyage through my gut.
For two days, leading to my release, nothing distracted me from looming death as palpable, pervasive and deeply rooted as my cancer.
A friend drove me home, and stayed while I ate yummy fish tacos. It eased my re-entry disorientation. Once alone, my home of nearly 40 year was bittersweet relief, familiar yet alien. I weirdly missed the hospital and nurses - my doting angels.
Days later, I answered an indelible call from a devoutly spiritual friend, Stella. I shared my diagnosis. To my surprise she revealed her husband had bladder cancer and was responding well to two-years of treatment. “James! You in the light and spirit. I’m gonna pray hard but I don’t think the universe is done with you. Uh, uh. You’ve gotta lot more to give to this world.”
June 8th, my home drive friend overcame unease, we met my oncologist, Dr. B. We totally clicked. A practicing, spiritual Jew, our belief in prayer, faith, and humor synced. I adored our witty meandering banter that seamlessly switched to professional communication about the “mass” (“It’s gross, right? I don’t like it.”), relating details (“It’s incurable. Remission is miracle status. But, I’ve seen miracles happen.”), the chemo and immunotherapy potions and unfathomable regimen. (Every two-weeks. Two hour in-clinic immunotherapy, then forty-six hour home chemotherapy infusions - until July.)
I requested my prognosis, “I’m not sure I want to say. I could have five doctors here, with different opinions.” My mother exceeded her three month prognosis by fifteen years so I pressed for the number. “Three years. The last year will be hell.” She urged, recoveries are unique as fingerprints, a positive mindset and gathering prayers are good as medicine. “When you’re back on the bike, you send me a picture.” The encouragement and support from her, my friends, the steps, my plan, I felt ready for treatment
But, June 15th, I woke with awful calf pain. I was shaky. Scrambling eggs was exhausting. I was a back at the ER. This time for 2.5 days. CT scans and ultrasounds exposed extensive leg and pulmonary thromboses - just like dear old mom.
On Riesman’s oncology wing, I “vacationed” for five weeks. Doctors talked about removing half my liver, part of my stomach and the mass I insisted be called “Bleedy”, to their dismay. But I was too unstable. Bleedy kept bleeding. There were so many conversations about tests, transfusions, and prognostications. I was sick of talking about me. The boredom!
I greeted other patients, and, if willing, roommates and I shared our journeys. Often harrowing, prophetic tales. I often circumambulated the oncology wing, spying glimpses of a potential dark future. Families gathered in final moments. I implored nurses to sit, tell stories about their lives, dreams, show recommendations, new puppies, loves, a new engagement ring. I heard nurses jockeyed for me to be their patient -“ the happiest cancer patient ever.” When asked how I could be so positive, I replied, “The 12 steps of AA! Everyone should do them.”
Despite trying to stay positive and make connection, I didn’t comprehend I was in danger.
Due to a Covid outbreak, I was moved into the solarium. I reveled in the quiet, two walls of windows, an expansive view of transport helicopters. legendary soaring hawks and sunsets.
Two weeks later, I fainted returning from the hallway bathroom. I was incontinent on waking up. I hid my face under a pillow and alerted my nurse about fainting. As she pulled back the sheets for cleanup, she gasped. I’d released mainly blood. A rush of staff attended to me. I was clinically unstable, near dead. I recently reviewed my medical records to discover I was on death watch that entire hospitalization.
Five more transfusions later, I was told radiation would begin. Immuno and chemotherapy treatments started immediately after my fifth and final radiation round. I was knackered and moaned to nurse Francie, “I’m so lazy. All I can do is lay here and sleep.”
She implanted my rally cry, “Ya not lazy! Ya fightin’ can-suh.”
Slowly, ”Bleedy” stopped. I started to feel “good” and was released. Visiting nurses checked my condition and disconnected me from chemo. Friends helped me shop and treated me to meals. My radio show listeners reacted with moral and/or financial support.
The anemia lessened. My stairs weren’t such a problem. Three weeks later I was carrying my bike outside and upstairs, riding to and from treatments while still on the chemo drip. I’d shock friends and neighbors, “Wanna know a secret?” I’d reveal my fanny pack and protruding IV tube. “I’m gettin’ chemo right now!”
Mid-April 2024, chemotherapy stopped. I still get immunotherapy, but only every three weeks, likely for life. Dr. B beams I’m doing amazingly well. “As close to a miracle with out being one.”
I am blessed. Maybe lucky. Nine-months of treatment, have been hard but not as bad as I feared. I still haven’t thrown up, only negligible hair loss, and have experienced only a few debilitating side-effects my compatriots deal with.
If in the wilderness, have a guide. I actively sought support groups which lead to “BD” of Boston Medical Center. I’m in his Men’s and GI cancer groups. We do qigong/tai chi, meditation, spiritual healing, writing, crafts, museum tours, and holiday parties. They are understanding, sharing sherpas.
In meditation, I was at war with cancer - an enemy invader, I wanted gone. That shifted after reading Gabor Maté’s view of illness “markers” and the bodies alarm. “BD” recommended cancer “thriver” Denis DeSimone. Now, I see cancer is part of me. Hating cancer is hating a part of me. If I can love cancer, I’ve come all the way, teaching me valuable lessons. Most days, my buddy and me get along.
Another blessing, my new PCP. He’s older than me with a zillion credentials. After a full physical and records review, he said, “First off, you’re in excellent health and have a great attitude.”
“Despite…”
“Yes, despite. You’re not old. Medically, eighty is old. Although we know things can change quickly, I see you have many good years ahead of you.” I declared, it’s not a death sentence, it’s a life sentence.
Meeting with Dr. B recently, I attributed my near miraculous recovery to her and the hemo/onclogy staff. She said, like always, “No! It’s all you. You’re so amazing - just incredible.
I paused, “Ya know, It’s beyond just us. There are so many spokes supporting the wheels of my recovery.”
During a four-day Thanksgiving hospital stay due to treatment related colitis, Reisman 11 nurses came by, they hated my return but loved seeing me. I told my main nurse, “It’s been a dark ride. But I see a lot of beauty. Cancer is sad and beautiful.”
About the Author
A decades long freelance illustrator and a 35-year radio host at Boston college's WZBC 90.3 FM, James received a diagnosis of Stage IV metastatic esophageal cancer on Memorial Day weekend 2023. He faces his condition with humor, grace, courage, spirituality and a heck of a lot of humor and storytelling, to remarkable results. Want to hear the radio show (hold your ears!)?: www.mixcloud.com/kotjames
By Chris Anselmo
Author’s Note: Please share this piece with anyone who might benefit from reading it. If there’s anything I’ve learned, it’s that we all struggle to ask for help.
The paramedic relayed my condition to the medical team waiting inside the ER lobby.
“This is Chris Anselmo. 27 years old. Has a disease called limb-girdle muscular dystrophy. His symptoms are chest pain and shortness of breath. He thinks he might be having a heart attack.”
I drew in air through my oxygen mask, but the crushing pressure on my chest kept my lungs from fully expanding.
Doctors and nurses wheeled me into an empty room off the main corridor. A flurry of blue arms sprung into action. One nurse removed my sweat-soaked t-shirt. Another placed EKG electrodes on my bare chest. A third drew blood from my right arm.
“We’ll be right back,” said one of the nurses in a thick Boston accent. “Press the button if you need us. We’ll know the results soon. You’re gonna be okay, hon.”
I didn’t believe her, but then again, I had never been rushed to the hospital in the middle of the night before.
I tried another deep breath. Another struggle.
Alone in my thoughts, all I could do now was wait. I closed my eyes and replayed the past hour in excruciating detail:
Waking up at 3 am gasping for air, drenched in sweat even though my air conditioner was running at full blast.
Dialing 911 and talking to the dispatcher, my hands shaking violently as I gripped the phone.
Digging dirty clothes out of the hamper, a wardrobe born of convenience and desperation.
Knocking over my forearm crutches in a futile attempt to grab both handles with one hand.
Riding in the ambulance through the pitch-black streets of Cambridge, Massachusetts wondering if this was the end, and if so, who would call my parents.
A knock on the door broke me out of my trance. The ER doctor — a short middle-aged man in a white lab coat — walked in, followed by the nurse with the Boston accent. The doctor held a clipboard with a printout of my results.
“Good news. You didn’t have a heart attack. This was definitely a panic attack.”
Thank God. The pressure on my chest lifted, and for the first time in an hour, I drew in a deep breath. Sweet, crisp air filled every inch of my lungs.
“I’m so glad it’s not….wait, a panic attack?” I sat up. “But I’ve had those before. This felt much more intense. Much worse.”
The doctor looked up from his clipboard. “Panic attacks can vary. Some are severe enough, like tonight, to land you in the ER. Have you been stressed more than usual recently?”
“Yes.”
“Any particular reason?”
I hesitated. In the past, when someone asked about my emotional state, I always answered in two words: “I’m fine.”
But this time, that wouldn’t be enough. He needed more.
“It’s…” My voice trailed off. I knew what I was feeling, but didn’t know how to put it into words. Damn, why was this so hard? Exasperated, I pointed to the crutches leaning on the chair next to my bed.
The doctor nodded. “Understandable. But a panic attack this bad is usually the result of accumulated stress and anxiety over a long period. Do you talk to anyone about your struggles?”
“Not really.”
“Okay, well we’re going to have to change that. Talk to a therapist, or a close family member or friend, or a trusted mentor. You need to get help, because this can happen again.”
I leaned my head back against the pillow. Although I was glad I wasn’t about to die, I felt humiliated.
How did I let it get to this point? Why couldn’t I let people know I was having a hard time?
The doctor was right. My ER trip was a long time coming, the result of years of saying “I’m fine,” when in reality, I was anything but fine.
Growing up, when I experienced stress or sadness, my default was to hide it from the world. When my parents asked how I was doing, rather than say I was overwhelmed by classwork, or that I didn’t have a lot of friends, I shrugged.
“I’m fine.”
To this day, I’m not sure when or how this response became my answer to emotional inquiries. My parents and older sister, Jen, always showered me with love, so it wasn’t a matter of fearing rejection. Perhaps it was simply due to my introverted nature, or being a teenager who didn’t yet understand the full spectrum of emotions inherent to the human condition.
Instead of confronting my negative emotions head-on, it was easier to ignore them or change the topic.
And, for a long time, this approach worked.
From childhood through college, I was able to bottle up my struggles without long-term repercussions. Sure, I’d have periodic bouts of depression or weeks when I was stressed out by a looming exam, but I always navigated through rough patches without needing to talk to anyone. I just figured this is how life works.
But self-sufficiency only lasted so long.
When I first noticed muscle weakness six weeks after graduating college in 2008 — the onset of a rare disease called limb-girdle muscular dystrophy type 2B — I did what I had always done whenever I encountered adversity: I told no one.
Eventually, I had to let my family and friends know that I was getting weaker. (My parents knew about the disease from when I was diagnosed after a car accident in 2004; but at the time, we were told symptoms would manifest later in life.) The disease was becoming impossible to conceal; it turns out that struggling to climb stairs sets off alarm bells in peoples’ minds.
Everyone was concerned by my physical decline and wanted to help in any way possible. My parents offered to make the trip from Connecticut to Boston every two weeks to help me grocery shop and cook meals. My roommates volunteered to do my laundry so I wouldn’t have to trek up and down three flights of stairs. Jen, who lived in North Carolina, invited me to visit her any time I needed to escape Boston.
My family and friends made my life much easier, chipping in whenever I needed assistance. I am forever grateful for how they stepped up to the plate in those early days. But they were only aware of the physical symptoms. My emotional turmoil was a different story.
They didn’t know it was eating me up inside that I could no longer shoot a basketball.
They didn’t know about the piercing stares I received anytime I got on an elevator to go up one floor.
They didn’t know about the corrosive envy I felt as I watched my friends achieve all the life milestones I wanted for myself — falling in love, having kids, buying homes in the suburbs.
They didn’t know about the self-loathing for who I had become, how instead of facing my challenges head-on, I withered under the pressure.
They didn’t know about the panic attacks that occurred any time I contemplated the future.
They didn’t know any of it — and yet, I wanted them to know.
I wanted to offload my burden onto someone who cared. But years of shrugging and deflecting had come back to haunt me. I lacked the experience to lay bare my emotions and let people know what was going on.
“What’s wrong, Chris?” my mom asked when my parents came to visit three weeks before my trip to the ER. “You’ve been so quiet. Is everything okay?”
“I’m fine.”
My mom could tell I was lying. “Did something happen? Did you fall? Are you in pain?”
I wanted this to be the moment. I was ready to tell my parents that I was struggling. I knew they wanted to help.
The words were inches from spilling out.
I’m overwhelmed.
This disease has taken over my life.
I hate how I’m handling it.
I hate that I’ve equated my self-worth to how strong I am.
I’m envious of my friends advancing in their lives and careers.
I’m tired of seeing people enjoying themselves.
I resent everyone’s success.
I’m mad at the world.
I’m scared of the future.
“I’m fine. Just tired, that’s all.”
If only I had known the relief waiting for me on the other side.
I was released from the hospital at daybreak, my path forward as clear as the orange sunrise sneaking up behind the Boston skyline.
I needed to change.
I had to find a way to push through the discomfort, to open up and ask for help, whether to a therapist, friends, or my parents. To someone, anyone.
“I’m fine” wasn’t going to cut it anymore.
When I returned to my apartment, I collapsed on my bed, still donning the dirty t-shirt and sweatpants dug out from the hamper three hours prior.
Although exhausted, my mind raced. I had to find the root cause of why my mind and body melted down so suddenly. So severely.
In retrospect, my previous panic attacks were warning signs, internal pleas to reverse course and seek help before I tumbled into the abyss. Warnings that I ignored.
The disease shared some of the blame, but, deep down, I knew it was just fanning the flames of an existing fire. Years of suppressing my feelings and avoiding uncomfortable conversations pre-dated my muscle weakness.
Over the next few days, I sought out the source of my hesitation. If I could better understand why I struggled to open up, then I might feel more comfortable reaching out to someone.
What choice did I have? One trip to the hospital was enough.
After days of soul-searching, my self-examination identified three barriers that kept me from asking for help: pride, fear, and shame:
Pride - I took pride in being self-sufficient. Before my disease, I thrived as a young adult. I did well in school, had many close friends, and loved living in Boston. Then the symptoms started, and it made clear just how much I could accomplish on my own. By needing help, I felt like a failure.
Fear - I didn’t want my family to worry about my health more than they already did. I was also afraid that, by sharing my struggles, people would think less of me.
Shame - I was ashamed….of everything. I was ashamed I was so insecure. I was ashamed that I attached my self-worth to what people thought of me and what I looked like. I was ashamed that I didn’t handle my challenges better. I was ashamed that I didn’t open up sooner.
These were sobering conclusions, but they were necessary to shine a light on the darkness within me.
Once I surfaced these barriers, I sought to dismantle them:
Pride - I was only a failure if I didn’t ask for help. Suppressing my struggles to the point of a panic attack was ludicrous. By asking for help, I’d be exercising my independence. I’d be admitting that I didn’t have all the answers, which was a level of maturity and self-awareness that most people never reach.
Fear - What if something worse happened to me because I didn’t open up? How would my family feel then? That would be much scarier. As for rejection: would they really think less of me? Of course not. I had many people in my corner rooting for me.
Shame - My value and worth came from God, not from what people thought of me or whether I could climb a staircase. My insecurities were understandable — no one likes being stared at — but my disability didn’t make me inferior. There was also no shame in making mistakes; no one handles adversity perfectly. And everyone struggles to ask for help.
I knew that these barriers were paper tigers, but for transformative change to happen, I would need more time.
In September, my parents came to visit a few days before my 27th birthday. When I opened my apartment door, they were taken aback by my condition. My hair was unkempt. I had bags under my eyes. I hadn’t shaved in days. Instead of being in a celebratory mood, my mom could see, once again, that something wasn’t right.
“What’s wrong?” she asked as she settled into my leather desk chair.
I looked over at my dad, who was standing in the kitchen pulling groceries out of plastic bags. They both looked at me with concern, deciphering my body language, waiting for a response.
Habit implored me to resist. I’m fine. But I knew, deep down, that this was my chance. This was the moment I had been working so hard to overcome.
I took a gulp of water on my nightstand. Before I had a chance to stop myself, the words finally, mercifully, tumbled out:
“I’m struggling.”
“How so?” My mom was concerned but composed. I would later learn she was relieved I finally expressed what they had known for months.
I took a deep breath.
“Just….the weight of everything that’s happened the last few years. The weakness. The falls. Carly passing away. I’m about to turn 27, and I don’t feel like I have much to show for it. No girlfriend. My job has stagnated. I keep thinking about the future, all the uncertainty. I’m not sure how I’m going to deal with it.”
An uneasy silence lingered in the air. Finally, my mom spoke.
“You’re going to face this with us, with Jen, with your friends. You don’t have to face this alone. You know that, right?”
“Yes.”
“How long have you felt this way?” my dad chimed in from the kitchen.
I sat down on my bed and sighed. A wave of relief rushed over me.
“A long time. A really long time.”
And with that, the weight of the world lifted.
In the weeks after my parents’ visit, whenever we talked, they made it a point to ask me detailed questions. Even if they couldn’t solve every issue I faced, they at least knew what the issues were now. They vowed to help me in any way possible. But most importantly, they validated my feelings.
I didn’t realize how much I needed the validation until I received it. For so long, I thought my struggles were unique, that they were the byproduct of errant thought processes, deep-seated insecurities, and dumb mistakes.
Hearing that I wasn’t crazy made all the difference.
Opening up to my parents provided a blueprint I could use with other relationships in my life.
Whenever a friend or coworker asked how I was doing, instead of saying “I’m fine,” I let them know about my fear of getting new adaptive equipment or that I was concerned about an upcoming strength test at the hospital.
When I talked to my boss, I didn’t shy away from the fact that it was getting harder to commute to and from work every day. She suggested I work from home more often.
When I grabbed drinks with my former roommates before Thanksgiving — the ones I hadn’t told about my disease for two years — I knew I had to be more open. By hiding my symptoms from them for so long, I caused unnecessary drama when I had to break our lease because I could no longer climb stairs.
“I should have told you sooner, you know?” I said in a contemplative moment, beer aiding in my courage. “I made things so much harder than they needed to be.”
I don’t blame myself anymore for how I handled the early years of my disease. So much was changing, so quickly. Although I wish I had built an infrastructure of support and love from the get-go, once I realized that everyone wanted to help me, once I realized that my struggles and challenges weren’t unique, I was able to course correct.
But it wasn’t all smooth sailing. It was one thing to tell people I needed help; it was another to take them up on it.
Soon, life would give me the chance to see how much progress I had made.
In early January, I slipped and fell in the middle of an intersection near my apartment in Cambridge. Good Samaritans helped me to my feet, but the incident left me bloody and shaken up. Another few seconds and I would have been flattened by oncoming traffic.
I thought about holding it in, hiding the event from those closest to me. Instead, when I called my parents that night to discuss their upcoming trip, I told them what happened, details I would have left out in the past.
“I’m glad you told us,” my dad said. “Perhaps the treads on your sneakers have worn out. Do you need us to go shoe shopping when we come up?”
I turned my sneakers over. The tread was smooth on the right heel, where I slipped. I was so consumed by the incident that I hadn’t thought of why it happened.
“You’re right. It was the shoes.”
Sometimes, the most effective help is walking alongside someone’s hurt and brainstorming solutions. My dad was always a problem-solver; it felt good to let him do what he did best.
The more I shared my struggles, the faster I climbed out of the abyss.
The tough moments continued, but by talking to people, by letting them know that life was a grind, a funny thing happened: my panic attacks disappeared.
I still hit walls. I still had bouts of depression. I still had moments when I wasn’t able to verbalize my feelings. But instead of clamming up, I resolved to tell people. Even if I didn’t feel comfortable sharing every last concern and fear, telling them something was better than nothing.
Every incremental ask for help strengthened my relationships. I felt closer to my family now that I knew we were in this fight together. I also grew closer to my Boston friends, who ran errands, bought me food, and texted me periodically to check in.
My support system grew, brick by brick, to the point where, in early February, I felt comfortable enough with my progress to take arguably the biggest risk of my life: leaving my job in the fall to get my MBA.
Business school would be the ultimate test. There was no way I could get through a 2-year, full-time MBA program without relying on multiple people — family, friends, and classmates — for support. It would take a village to help with the logistics of getting to and from campus, going to social events, navigating group projects and classwork, and interviewing for jobs.
In my not-asking-for-help days, this goal felt unattainable. But now? With the right support, I at least had a chance.
I applied and got into several schools in the Boston area, ultimately deciding on Boston College.
But it wasn’t a done deal.
The night before I had to let BC know my decision, I barely slept. I couldn’t figure out if this was an achievable goal, or if I was leading myself headlong into disaster.
Could I really do this? Would my mind and body hold up?
I went into work — deadline day — unsure what decision I’d make. Now that I had to choose, I felt the consequential weight of the moment. Either way, my life would never be the same.
The web portal was open on my browser for several hours. Not only was it two years of my life I would be signing over, it was also a hefty non-refundable deposit. I didn’t want to say yes, only to reverse my decision a week later.
At lunch, a few of my coworkers gathered around my desk. The deadline was only three hours away.
“Well? What did you decide?”
I felt the familiar urge to recoil, to run away from a challenge beyond my strength. But I knew that if I was willing to rely on others for support — including my friends standing next to me — I would be just fine.
I looked up from the screen and smiled.
“I’m going.”
About the Author
Chris Anselmo is a Connecticut resident living with an adult-onset neuromuscular disease called limb-girdle muscular dystrophy type 2B. In his newsletter, Hello, Adversity, Chris shares resilience strategies and resources that have helped him on his rare disease journey.
By Glenis Redmond
I got the gift of gab from my Dad. My fourth-grade teacher, Mrs. Kathrine Priest, wrote on my report card in the English section: oral work is excellent; Glenis enjoys talking, acting, and singing before the other children. I hope she develops this talent. I was that kid, the animated kinesthetic one acting out any story or scene with dance, humor, and timing. I was always the student called upon to read stories and poems out loud. Once, my teacher asked me to read “I Wandered as Lonely as a Cloud” by William Wordsworth, and my classmates met me with wild applause. I felt not only heard but seen. In retrospect, Mrs. Priest was very strict and stern, yet she was one of the only teachers who saw the storyteller in me. Wherever she is now, I hope she can see that I developed my talent by becoming a poet and a teaching artist.
Who knew while running around the world professionally telling stories for twenty-seven years that I would end up here––fighting for my life in my 55th year? Maybe I should have known something was wrong when I had developed a dull throb at the base of my back and that my knee hurt so bad that I had a noticeable limp. I was hobbling around the office at the Peace Center, where I was the Poet-in-Residence. I took no real note of my gait until a co-worker asked, “What happened to you?” I brushed her off with a clipped response, “Oh, it’s just my Fibromyalgia acting up. I thought it was just that. I have been dealing with Fibromyalgia since 1992, which meant I was accustomed to muscle pain and flu-like symptoms. I had learned to push through.
However, on this day, my co-worker just shook her head and raised one eyebrow, and this non-verbal communication of concern was enough for me to schedule an appointment with my nurse practitioner. She advised me that we should do a complete physical with blood work. I told her that I was leaving for a poetry residency in New Brunswick, New Jersey, for the State Theatre in a few days and would be gone for three weeks. She said, “Let’s do it when you return. The physical will be six months early, but do not worry; your insurance will pay.” I agreed. I was dubious that the physical or the blood work would reveal anything because my last physical was routine with no red flags. I thought this was just the slippery life of Fibromyalgia, and all I needed to do was rest and take muscle relaxers to gain my footing again.
So off, I went on my 21-day poetry community residency in New Jersey, which consisted of at least three to four engagements daily. The events included poetry readings or workshops, which could occur at a school, a corporation, a conference, a prison, a halfway house, a detention home, or a church.
As a former counselor, poet, and teaching artist, I aim to create safe spaces for participants. In each setting, my goal is not necessarily to make people poets but to make them aware of the poetry in their lives. It is challenging but gratifying work.
At one school, the principal apologized; he told me he was glad I was there, but these students would not want to learn poetry and were gang members. By the end of our time together, I got buy-in; these young people shared heartbreaking stories through their poetry. They moved me so much that I wrote a poem called “Bruised.” The poem ends like this: I know this detour we took/ down old roads is a place we had to go,/ places where we have been loved so hard it hurts,/so hard we are still bruised./ We bear our scars,/ then we pick up our pens/and write.
The red X on my map that said I AM HERE was not so much a geographical locator but defined my identity, how I saw myself, and how others saw me——a Mama, a Gaga, a Black woman poet, and a fierce literary citizen. I stand firmly in poetry and my outreach of it. I also embrace the unconventional artist road life that I live. However, my May calendar that year was packed as always, but it felt more taxing. During the residency, I was dragging and exhausted. I knew something was off at my core. I pushed and pushed through. When I returned home, the terrain of my life swiftly became unrecognizable.
I had my blood work done before I returned to the doctor for my physical. I saw the red flags on MyChart populate. Eventually, I noticed that I had a Monoclonal M-spike. I copied and pasted that phrase into Google. Instead of fifteen possibilities of how I would meet my demise, there was only one option: Multiple Myeloma. In the privacy of my own home, I learned that this meant blood cancer. I did not cry; I went numb. I did not tell my Mother or my twin daughters Amber and Celeste immediately. I kept this knowledge to myself until the official diagnosis. I dreaded telling them and I hoped the blood test was wrong. However, when my nurse practitioner entered the room at my appointment, she had tears in her eyes. I told her that I already knew. I felt immense shame and failure. Who was I without caring for my family and friends and traveling the world giving poetry away? I had lost my footing. This was quite a turn; the caretaker had to be cared for.
I began doing the cancer dance of weekly blood draws, chemotherapy, and steroids to get ready for a Stem Cell Transplant. This process all transpired during the six months before the pandemic. I had already been homebound before the rest of the world shut down. I had been saying that I needed to slow down for five years. Be careful of what you ask for; you might just get it. Stage III Multiple Myeloma told me to sit down––to have several seats. Being still is the most challenging work for a doer. This is when I discovered my screened-in patio. Who knew? I had a new relationship with it and the cast of characters that inhabited my backyard, Pine.
Called it a winged thing perched on the soul
From my backyard, I agree.
Through the most challenging year of my life
my feathered friends came through.
The red streaks of the Cardinals
dot the pine-like Christmas tree ornaments.
The next day mourning doves
wake the day with their sorrow-filled calls.
Our state bird, the Carolina Wren, claims
not only South Carolina but also my sanctuary;
my heart belongs to the hummingbirds with their
incandescent darting. Surely, good omens are to follow.
Then, the brilliant blur of Eastern Bluebirds.
Between the leaves, my eyes can never take in enough
of this tarot reading of wings.
I hold on as they lift off into the cerulean skies.
People say that I’ve gone to the birds,
I disagree. I believe. I’ve lived here all along.
I spent most of my time at home with my grandson, Julian. He and his Mama, my daughter Amber, live with me. Julian was five years old when I was going through the most arduous stages of cancer. He and Amber both were my lifeline. Yet, I hated him seeing his Gaga sick, bald, and frail, but we are a multi-generational household. We both suffered. He had spectrum and sensory issues. I was dealing with not focusing too much on dying. While Amber was working, I taught him board games: checkers, Chutes and Ladders, Battleship, and Trouble. We had great fun, but we were the ones who were troubled. As I got stronger, we began frequenting the South Carolina State Parks. I knew we needed to be out in nature. We loved the adventure so much that we wanted to visit all forty-seven state parks to earn the Ultimate Outsider classification granted by the South Carolina State Parks. We have been to twenty-two. We had to do something to shift our outlooks. If I were to die during this cancer ordeal, I wanted Julian to have a treasure chest of memories that we had built. I eventually published a poetry book about our excursions, The Song of Everything: A Poet’s Exploration of the South Carolina State Parks. This is an excerpt of a poem titled “Dear Grandson”:
“Julian, I want you to know
every wonder belongs to you,
though some will say to you otherwise.
Go anyhow: Your passage
has already been paid.
Be an Ultimate Outsider
wherever you go.
It’s up to you to forge on.
Remember, it’s the destination and the journey.
Remember our rain prayers.
Remember, even when I have turned
to nothing but air and am carried
away by a strong Gale.
Know I will be there with you
out in the green and gold meadows
in the gloaming.
My hand will be in yours.
I will be singing as everything sings to you.
Grandson, listen with your whole self
and with your whole self
sing back.”
I wanted to live. I knew there was a good possibility that I could die, but I wanted to live for myself, especially for Julian and eventually for my newest grandchild, Paisley. [I now have another granddaughter, Quinn.]
For six months, I was readying for the Stem Cell Transplant. At first, I did not look cancer-ish, with no hair loss and no weight loss. Many people told me that I looked good and didn’t look sick. I was grateful for this small mercy, But often, I wanted to reply to that comment with, “Multiple Myeloma is an inside job.” When I finally reached the point that I was ready for a Stem Cell Transplant, I slid the most. I was having an autologous transplant. In other words, I was my own donor. This harvesting was not event-free, though I told it would be. My blood pressure went dangerously low. I eventually pulled through, and the next week, I was admitted to the hospital for my twenty-one-day stay. During this process, I had fear. I felt terror. I felt rage. I felt sorrow. I felt grief and loss, but I did not speak of it.
The first day in the hospital, they gave me my cells back. Then, the next day, they gave me high-dose chemotherapy. This is when the fight began. I was in the wilderness. I did not know who I was, let alone where I was–– wild-eyed and weathered between pneumonia, vomiting, and constant diarrhea. I hung on with teeth and claw. During my stem cell transplant, my Mother would come and sit by my bed and not say much but stare at me as if she was lending me some strength to live. I was delirious, going in and out of a morphine haze. My daughter Celeste (one of my chief medical advocates) said I was conversing with people not in the room. I made it through this part of the woods. When I was released from the hospital after the Stem Cell Transplant, I was bald, bloated, and looking very much like my own grandfather. This is when I looked cancer-ish. I received gawks when I went out in public. There was no denying I had cancer.
Though I had survived the worst and had achieved remission, I still had to return to the hospital for weekly infusions––yet all I wanted to do was go home to cocoon and heal in the comforts of my home. My hope was deflated. It was an uphill climb. I had pain from multiple sources. I had bone pain from Multiple Myeloma from lytic lesions on my skull, clavicle, and femur. I had muscle pain from Fibromyalgia. I had nerve pain from neuropathy in my feet and hands. In other words, it was and still is pain on top of pain on top of pain. I never went back to a 9 to 5 position because I am physically and psychically beat up.
I lost so much, and I began to take stock of my losses: My livelihood. My gait. My energy. My ability to dance. I am a dancer. Think old school: Prince or Cameo. I could not walk around my neighborhood daily because it was too high impact, and it hurt. I couldn’t wear my beloved Fluevogs shoes. I have a collection. Don’t ask how many. My favorite is the metallic orange Bebop boots. Think Alice in Wonderland meets Parliament and the Funkadelics. I remember taking on virtual keynotes and poetry workshops too soon; I was very winded. People wanted the old me, and I wanted the old me, but she was not there. I needed to give myself more space to get stronger and healthier and learn who I was in this now.
I am still reckoning with what I can and cannot do. I am fully aware of my limitations and the life expectancy of Multiple Myeloma patients diagnosed at Stage 3. Don’t google the statistics. It is sobering, but I rest when I need to rest. I use Trazodone to battle my cancer insomnia. I get up to write poetry, to garden, and to spend time with my mother, children, and grandchildren. One of my greatest lifelines is talking weekly or sometimes more to my brother Will on FaceTime. He lives in New Zealand. Later, when I was out of the woods he told me, “Glenis I really thought you were gonna die.” I appreciated him showing up. We joked a lot. We tried to right the world. I am thankful for my family and my community, which cares for and about me. However, some days, I still feel lost in the wilderness of cancer. Somedays, I feel broken and withered, but I do my best to make meaning and strive to find purpose. I remind myself now is all there is. I remember to breathe in fully. Remember to enjoy all the growing things around me, including me. Know that there is rugged terrain in the wilderness, but there is also beauty. Remind myself that I am here to claim my space and in my Glenis-way––Bloom Anyhow!
I felt the Tacoma Fall chilled air
as I walked alongside Renee
buttoned in my favorite coat,
the one with a faux fur collar
and magnetic clasps as buttons.
I struggled to match her long stride
but we twinned with our plaited hair,
when we entered her hush-filled home
she did not warn me of her mama
lying on the couch taking a nap,
on her way somewhere
from which she would not return.
Every one of her bones pronounced,
but I was not afraid; I felt the room
hum around me like it did in chapel
when the rays of light shone on me
through stained-glass windows
when she extended her skinny branch
of an arm and circled me with her voice
clear as the dome of sky outside
“Glenis, come here. Don’t you know I love you?”
Me, a scruff of a muffin little girl
what did I know of love?
But her words made a solid landing.
I think it was about the place she was going.
I think it was about those three words.
Every Autumn, I think of Mrs. Langley
when the leaves turn golden, rust, and ruby
and begin their dancing descent,
I can feel her brightness upon me
especially now on my cancer journey.
I remember the gift she gave me
and now I too, never hesitate to say
to anyone in need, I love you.
About the Author
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
Photo: Pexels, Andrew Patrick
Little did I realize, as a survivor of trauma and loss, how much my lifelong capacity for wonder had been so vital to my recovery. I’d never recognized my ability to be amazed and wowed as a true strength, and no one I’d known had ever validated these qualities as a sign of strength, wisdom, or even maturity. If anything, being awestruck or wondrous was something akin to being gullible, naïve, or childlike. Yet profoundly healing encounters with awe and wonder are common experiences for survivors of trauma and loss. Indeed, a powerful moment of awe with a great blue heron saved my life decades ago.
Recently neuroscience has shown us the healing power of wonder, though previously underexplored and underappreciated. Now researchers echo what ecologist Rachel Carson believed was essential for human survival: “Those who contemplate the beauty of the earth find reserves of strength that will endure as long as life lasts.” In the same spirit, I’ve launched a storytelling project and a YouTube channel called Healing Through Wonder, dedicated to the resilience-building gifts of awe and wonder for those living with grief and trauma.
Healing Through Wonder explores the power of moments that take our breath away and open our minds. In a post-pandemic, cynical world where many of us have lost faith in humanity or lost time doomscrolling through social media, it’s heartening to know that neuroscience research supports our awe-inspiring experiences despite the pessimism around us. Studies published by the Greater Good Science Center and the American Psychological Association show how our sense of wonder helps heal loneliness, trauma, and grief by giving us meaning, purpose, and a wider, more open perspective. In the past few years, exciting bestselling books such as Dacher Keltner’s Awe: The New Science of Everyday Wonder and How It Can Transform Your Life have been released on the neuroscience of wonder with evidence that even one moment of awe can transform our lives.
Indeed, one moment of awe did truly change my life—or saved my life. My story centers around a profound encounter with a blue heron at the age of twenty-four.
In 1979, as a homeless survivor of domestic violence, still running from my former partner, and in suicidal despair, I was ready to end it all at a campground alone by a river. I had a full bottle of valium in my hands, and beside me, another bottle of cheap red wine to wash it down. Out of the wide, twilight sky a majestic heron circled overhead and landed remarkably close to me—about ten feet away. In the dim, rising glow of the moon, the heron’s piercing eyes stared into mine, and I froze in amazement, entranced, causing me to stop swallowing the pills. This moment of sheer awe saved my life, as I realized there was just too much beauty and magic in the world to give up.
Naturally, after such a spiritual awakening, I followed herons to their wetland sanctuaries for years. Wandering and watching them quietly in their providence, I marveled at their stillness standing in shallow waters, or their determination to build nests with their mates, their elegance dancing in pairs as courtship, fishing, preening, and flying. I learned lessons about dignity, balance, grace, patience, the art of timing, and much more.
Robyn Houston-Bean, Founder of the Sun Will Rise Foundation, Co-host of the Healing Through Wonder project.
After four decades of wondrous encounters with herons and studying the neuroscience of wonder, I’ve joined with a colleague, Robyn Houston-Bean, the founder of the Sun Will Rise Foundation, to co-host storytelling sessions for our Healing Through Wonder project. Robyn has also found profound healing in experiences of awe and wonder and tells her story of a surprising encounter with a dragonfly after the death of her son, Nick. She describes a moment that took her breath away as the dragonfly stayed with her at her son’s graveside as she grieved, resting on her arm, her hand, hovering around her, following her. In her amazement and attunement to the dragonfly, she welcomed a sense of connection with her son and a sense of oneness with everything around her, opening to a warm, reassuring sense of peace. She now believes, as strongly as I do, that people struggling with grief, trauma, or addiction can be encouraged to claim their sense of awe and wonder in their healing—in nature, as well as in music and the arts, in spiritual rituals, in adventures and quests to other lands, in marveling at human acts of courage and ingenuity.
Through the Sun Will Rise Foundation, Robyn facilitates groups for those who are grieving the death of a loved one due to substance use and she has heard many healing stories of wonder from group participants.
Thanks to Robyn and other storytelling guests from The Sun Will Rise Foundation as well as storytellers from SADOD (Support After a Death by Overdose), our Healing Through Wonder channel includes firsthand accounts of wondrous encounters and uncanny synchronicities. Reflecting on these unexpected, life-changing moments, we examine the healing effects of what captivated and transformed us.
On YouTube: Robyn Houston-Bean, Val Walker, and storytelling guests Carol Bowers and Tanya Lord
Stories of wonder, awe, enchantment, and reverence that had been secretly tucked away for decades are generously shared on our Healing Through Wonder channel. Our stories show how our wellbeing thrives on our willingness to open ourselves to encounters of awe and wonder, no matter how brief or fleeting or odd. There’s a whole, wide, dazzling world to amaze us beyond the din our overthinking minds, ruminations, or nagging inner chatter. Our willingness to look up and be amazed can turn a bad day around, or give us pause in a good way, or even change our whole outlook on life.
As our project develops and as Robyn and I learn more about the healing power of awe and wonder, I’ll be blogging here about the exciting science of awe as well as sharing experiences that have sparked our recovery from trauma and loss.
About the Author
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
You can also learn more about the Healing Through Wonder project through their YouTube channel, The Sun Will Rise Foundation, and Support After a Death by Overdose (SADOD) project.
On March 3, 2024, we held our second annual event, “Reclaiming Our Mental Health Stories”, during which we shed light on the experiences of individuals navigating their mental health journeys, which are often stigmatized, dismissed, and underdiagnosed. Experience the power of storytelling as you listen to Marina, Nathalie, and John, three courageous storytellers who shared the challenges and insights they’ve encountered on their journeys with mental health.
On February 4 2023, we held our inaugural annual event, “Making the Invisible Visible”, during which we shed light on the experiences of individuals navigating “invisible” chronic illnesses which are poorly understood, challenging to diagnose, and often dismissed by the healthcare establishment. Experience the power of storytelling as you listen to Katy Morly and Lili Fox-Lim, two courageous storytellers, who shared the challenges and insights they’ve encountered on their journeys with chronic lyme disease and myaligic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
When I was 15 years old, I told my pediatrician that I ate very specific foods at very specific times of the day, and when my eating didn’t go exactly to plan, I made myself throw up. She nodded and then left the room. When she came back, she handed me some papers, the same way that my teachers handed out worksheets in class. Each paper was titled with a different word that I didn’t recognize.
“You have anorexia and bulimia,” she said.
I remembered how, in middle school, I bought one of those celebrity gossip magazines at the grocery store. The cover featured Demi Lovato, and it talked about how she used to starve herself all day, then eat everything in her cupboard at night, and then make herself throw it all up. I read the words “binging and purging.” I remember feeling so sad for her, but thinking it would never happen to me because things that happen to celebrities didn’t happen to normal people.
So I said to my pediatrician, “No I don’t, because I only do it sometimes.”
I left the doctor’s office with my new handouts and a lollipop for my troubles.
There was a time when what, when, and why I ate never crossed my mind. But when I was 12, I remember coming home from school with a new fact I’d learned.
“Did you know that when you eat bread, it all just breaks down into sugar in your stomach?” I said this to my mom, a gastroenterologist. She giggled, enviously, at my simplified outlook on the world.
These were the years when I begged my babysitter to take me to Cold Stone every day after lacrosse practice. She’d say, “Only if you eat the whole thing.” I would order cotton candy ice cream with fudge, caramel, and gobs of cookie dough. I scraped my cup clean every time, and then I’d make a toasted plain bagel with Nutella at home. When dinner was served shortly thereafter, I’d use my fork to scrape my grilled chicken and broccoli onto my dad’s plate. My stomach had no room left, stuffed with foods that I had learned all break down to sugar in the end.
My father is a facial plastic surgeon, an expert in making people more attractive. And my mother, the gastroenterologist, knows exactly what to eat to be “healthy.” But my parents never tried to fix my 12-year-old diet. When I gave my dinner to my dad each night, I’d call him my garbage disposal, and he’d return a gaze that said, Again? but his judgement ended there. I believe they were concerned about my food waste more than anything.
I sustained my Cold-Stone-and-Nutella-bagels diet until I grew breasts in eighth grade. Puberty is terrifying for adolescents. Adults avoid change like a sickness, scared of a new routine and way of being. But in puberty, adolescents have no choice. My shirts that used to drape off my body began to hug my chest, and training bras simply didn’t do the trick anymore. I bought bras that were a size too small, to hide them. The worst part was that I was navigating the change alone, as most of my friends still had boards for chests.
During puberty, I learned another fact: breasts are made mostly of fat. So, if I was growing breasts, it must have meant that I was getting fat. I told myself this as I entered high school. At 14 years old, I could look 18 with some makeup and a low-cut shirt. Instagram taught me to look and act older than my age, which meant to have breasts, but not too large, and to have a thin waist, but not too thin. After a beach vacation, I posted an edited picture of me in a bikini. Smooth the face, pinch the waist, and enhance the muscles. Fruit and spinach replaced bread and pasta. I convinced myself that I was lactose intolerant so that no one would ask me if I wanted ice cream or “cheese-on-that?”
My body caught the attention of a boy. He and I were in the same math class. We would FaceTime to do our math homework together, which turned into me doing his math homework for him. I liked him for his charm and the validation that he gave me: if I didn’t like my body, at least a boy did. And so, the more attention he gave my body, the more I paid attention to my body, and then he liked my body more, so I liked him more.
At the same time, I was flying all over the country for lacrosse camps and tournaments. I played anywhere between 2-8 hours of lacrosse each day. I complained, but I secretly loved how much I got to exercise. I used it as an excuse to eat pasta and bread again. I fueled and refueled my body based off how many hours I exercised.
But, lacrosse went on pause in August, so I stopped eating. In 14 days, I lost 15 pounds. One day, I woke up and decided to be lactose intolerant again. I allowed myself to eat celery sticks, hummus, salad, and one egg at a time. I took daily pictures of my waist to document my progress. My waist was never quite thin enough, though; it wouldn’t be until I disappeared completely.
During this time, my family visited Jackson Hole, Wyoming. While hiking the Tetons, I bought a sandwich with mayonnaise so that it would spoil in the sun, and I would have nothing to eat. I made my family turn around because I was nearly passing out hiking. Feeling guilty about my lack of exercise, I ran four miles when we got back to the hotel.
Later that night, my mom came into my hotel room. She lowered herself slowly onto my bed, as if the bed was as delicate as the subject matter at hand.
“Dad and I think you look too thin,” she said.
“I’m just sick of eating pasta and carbs all the time,” I lied. “And I’m not playing lacrosse, so I’m just not as hungry and I just don’t look as strong.”
I don’t remember the rest of our conversation because the only thing that mattered was that someone called me “thin.”
There are a few memories from August 2016 that I will never forget. One night, my mom found me with my head in the toilet. We had pizza for dinner, and I was trying to get rid of it. It was the first substantial meal I had eaten in two weeks, and when we locked eyes, our eyes were glossy with understanding.
The next morning, my mom asked her friend, an athletic trainer, to come talk to me. I didn’t know the word at 15 years old, but this was an intervention. I’m sure he told me all about what, when, why I need to eat, but everything went in one ear and out the other. I ate a piece of cold pizza in front of them to show them I understood.
When they made me start eating again, I started running four miles each day. My foot began hurting, but I didn’t stop. I was seeing the boy from my math class in a few weeks, and I couldn’t lose all the progress I had made.
At the end of August, a group of our friends met up at the beach. I was so excited for the boy to see the progress I had made on my body.
That night, he had sex with me when I said I didn’t want to have sex with him.
“Please,” he whined.
“Okay,” I complied.
It hurt and I felt suffocated. I felt like a grown woman and a total whore, and I thought that they may be one in the same.
At 15 years old, I struggled to comprehend what had happened to me. I spoke few words for a week. I wouldn’t let anyone get within an arm’s length. Each night, I’d jolt awake, suffocating, hysterical, throwing pillows, punching air, pulling my hair. I’d been cracked in two.
I first spoke about the beach incident with my therapist, then my mom. It seemed like everyone knew something I didn’t, like I had spinach in my teeth and no one would tell me.
I kept running. He didn’t love me, which made me want to eat everything, which meant I had to keep running. I ran so much that I broke my foot, and when my foot healed, I made new eating rules. I wasn’t allowed to eat carbs after 6PM, unless it was the night before a lacrosse game.
The rest of high school came and went like the ocean’s tide. I was pummeled at times, pulled into a riptide, overthinking every meal. These times often ended in my eating everything else before I ate what I wanted in the first place. But other times, the water was calm. Eating felt simple; I ate what I wanted until I wanted to stop.
During my senior year, I strung along enough calm eating days to convince myself that I had overcome my eating disorders. I had been accepted to Brown where I would play college lacrosse, so food became “fuel” for my sport. I wrote my college essay about conquering anorexia and bulimia, and then I gave a speech about it to my entire school. I was the girl who handled adversity, who lived to tell the tale.
And then, I relapsed. When the pandemic hit during my first year of college, I was pulled right back into that riptide, trying to equalize my calories to my exercise. That year, I made myself throw up after binging at Christmas dinner. I peered at myself in the mirror afterwards. Through a blurry gaze, I asked myself, Who are you?
I am an anorexic and bulimic girl in recovery. I’ve realized that you don’t get over these diseases like the annual flu. They’re dormant at times, and they resurface at inconvenient times. Playing college lacrosse helps because anorexia isn’t an option: I have to eat to have energy. But—sometimes—my body looks bulkier here, and squishier there, and I restrict my eating accordingly.
The looming question lately is What happens once lacrosse is over? 14 years of using my body to serve a sport all comes to an end this May. I’m entering uncharted territory. Perhaps I’ll become the lost 15-year-old again with self-inflicted lactose intolerance. Perhaps I’ll revert even younger, back to my blissfully ignorant Cold-Stone-and-Nutella-bagels diet. Or perhaps, I’ll stay in this space where I look in the mirror and finally say, “Okay.”
About the Author
Nathalie is currently a senior at Brown University. She is majoring in English Nonfiction Writing and plays for the Brown Women’s Lacrosse team. Nathalie has a history with anorexia and bulimia, beginning in high school, and she continues to navigate challenges with disordered eating as a college athlete.
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
