Photo Credit: Cynthia Magana

When we’re captivated by something greater than ourselves in a shared moment of wonder, we see each other in a whole new light. And later, when we relive these wondrous moments through storytelling—days, months, years later—we rediscover each other in a new light.

I recently listened to a friend’s awe-inspiring encounter of being in the path of totality for the solar eclipse in April this year. She had traveled from Boston to Ohio to reach her perfect viewing spot and fortunately, the weather was ideal for the full spectacle. Weeks later, she shared those powerful moments that had taken her breath away with me and a friend—and our breath was taken away just listening to her story. We got chills right along with her as she held us in suspenseful detail, allowing us to be in that moment of awe with her. We felt something greater than ourselves had unified all three of us in this profound moment of amazement.

Indeed, millions of Americans felt a collective sense of awe during the eclipse: “Oh, wow —I’ve never seen anything like this!” Their awe generated deep emotions, tears of gratitude, chills of excitement, reverence, a sense of oneness with others, an affirmation of life. For such a brief and fleeting event, the eclipse had an enormous impact.

In the same spirit, I’ve enjoyed watching stories of people viewing the Aurora Borealis in May of this year as Americans gazed at these stunning lights for the first time. And on a completely different awe-inspiring topic, it’s heartening to hear the stories from awestruck fans of Taylor Swift about being in a live audience of 60,000 (even though I’m not a Swiftie). And I’ve been captivated by the (comeback) performances of gymnast Simone Biles after her brave advocacy for the mental health challenges of athletes.  And just last night, I’m still wowed by that amazing half-court shot by Boston Celtics player Payton Pritchard at the buzzer.

The awe-inspiring vibes are contagious through stories that relive the moment--from eclipse viewers, Aurora Borealis enthusiasts, ecstatic Swifties, or astonished sports fans.

Quite simply, in these cynical and pessimistic times, I’m awestruck when I see other people awestruck. Even vicariously, enjoying these moments of awe and wonder gives me a boost of faith in humanity. Certainly, humans are wired for collective experiences of awe and wonder, and we seem to be hungry for these experiences.

Neuroscience Validates Sharing Our Experiences of Awe

Neuroscience has shown us how these powerful moments of awe allow us to see ourselves in a whole new light. Awe is considered to be a self-transcending emotion—a state of mind that stretches our awareness beyond our habitual patterns of thinking. Essentially awe grabs our attention away from our self-referential thoughts and pulls us out of our self-absorption. Psychologist and author Dacher Keltner has called our sense of self within this expanded, vast perspective our “small self,” an awareness of being a small part of a much wider world beyond our own lives. This vast, all-inclusive sense of oneness helps us feel humility and compassion for others around us. (Keltner’s bestseller, Awe: The New Science of Everyday Wonder and How It Can Transform Your Life is a friendly introduction to the topic.)

In a BBC article, “Awe: the ‘little earthquake’ that could free your mind,”  University of Michigan psychologist Ethan Kross describes awe as “the wonder we feel when we encounter something powerful that we can’t easily explain.” Awe and wonder leave us speechless and stunned for a moment, a pause—an instant change that resets our thought patterns. Kross adds, “When you are in the presence of something vast and indescribable, you feel smaller, and so does your negative chatter.” Kross has conducted studies with PTSD survivors including military veterans and youth from underserved communities. One study where participants joined in a rafting trip in Utah demonstrated how their feelings of awe predicted better outcomes in their well-being months later. In short, when we experience awe, we turn our attention outwards instead of inwards. We are better able to attune to one another in the moment.

It appears this attuning to one another, shifting our attention outward, also happens when we share our stories of awe and wonder.  Social psychologist Michelle Shiota, a researcher at Arizona State University, describes getting out of our “predictive coding” about what is supposed to happen next when we open to an awe experience, even when we hear the story from the experiencer. Awe allows us to break out of our expectations, assumptions, and biases about what we think is supposed to happen as the experience unfolds. “The mind dials back its ‘predictive coding’ to just look around and gather information.” So, awe literally puts reality right in front of us. Our minds practically gasp when we’re overcome with awe—we “get it” on some level even if we cannot explain it.

So, when we are experiencing moments of awe with others in storytelling, we welcome these powerful, inexplicable experiences that snap us out of our habitual mindsets and expectations. When we share our stories of awe, we are allowing our listeners to “dial back” their own “predictive coding” and just be there with our experience as if we are all feeling it for the first time.

The Healing through Wonder Project

I’ve not only been excited about neuroscience research on awe and wonder but I’ve been inspired to gather storytellers to share their life-changing experiences. I’ve created a YouTube channel called Healing Through Wonder where my co-host, Robyn Houston-Bean, founder of The Sun Will Rise Foundation, and I interview guests who tell their stories of healing from transformative encounters with awe and wonder. We invite guests who are facing grief after the loss of a loved one due to substance use, as well as guests who’ve survived trauma and addiction, to share their awe-inspiring experiences. Many of our guests have attributed these transformative moments of awe to being a turning point in their healing—their lives have never been the same since that shift in their awareness.

Robyn Houston-Bean, co-host, Founder of the Sun Will Rise Foundation (top left). Val Walker, co-host (top right). Tavyn Thuringer, Special Projects Assistant at SADOD (Support After a Death from Overdose), bottom left. Mary Peckham, peer grief support facilitator at Matthew’s Candle, bottom right.

With our Healing Through Wonder channel, Robyn and I have created a friendly platform to claim and celebrate our healing encounters with awe, such as breathtaking moments with wildlife, with dreams, music, spiritual revelations, and more. We believe everyone has a “wonder story” and we’ve witnessed how sharing our story inspires listeners to explore and welcome future experiences of wonder. Indeed, healing moments of awe and wonder are contagiously uplifting as well as meaningful. We get goosebumps and feel a sense of oneness and closeness with each other when we share a moment that took our breath away. 

If any readers of the Health Story Collaborative are interested in being a storytelling guest on our Healing Through Wonder channel, please feel free to contact Val Walker through her website.

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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 April 13th, 2024 Health Story Collaborative had the honor of facilitating a Healing Story Session at SCIboston's annual fundraising gala, with two amazing members of their community, Dianne Viktus and Matthew Klos.  Listen to their stories as they share the trauma, pain and challenges they have faced on their journey with a spinal cord injury, and also the hope and healing that carries them forward.

By Dianne

You are allowing me to share my voice in your head - that is a sacred responsibility. There is intimacy in living in someone else’s mind and sharing that moment and I want to acknowledge that. I also want to acknowledge that there are many different pieces to my story, and this is just one small part of that.

As someone who suffers from grief, loss, trauma, anxiety and depression, I find a lot of meaning in sharing my story. Just by receiving it, you are giving me meaning.

~ 

When I was about seven years old, I remember jumping in the back of my parents 1992 Plymouth voyager - you know, those ones with the wooden paneling on the side. I was eager and excited that it was finally my turn again to make the three-hour road trip to my grandparents’ house for the weekend. My grandparents were so important to me and my two older sisters. We cycled through visiting them.

My papa taught me how to fish in the pond behind their house. I always insisted he throw back the pregnant fish. He insisted he did, as if he could really tell (eye roll).

My grandma used to tell me I was going to be a doctor. Since I was seven years old, she was grooming me. We would play doctor together with her old stethoscope from her nursing days and her old leg cast from when she broke her femur - me and grandma ended up having that in common, as I broke my femur a year ago. 

She never stopped telling me how great of a provider I would be one day. Years later, they moved down the street from us so I got to stop by whenever I would pass their house on my runs around the block or on my drive home from high school. When saying goodbye, her five foot two inch, frail but mighty warm body would squeeze me as tight as it could around my boney hips and call me doctor. I'd roll my eyes, look down and smile, “you know grandma, I don't know if that's what I’m meant to be,” I'd say, before telling her I loved her and giving her a big kiss. 

My grandma died when I was a freshman at Brown. It was spring, we were in the middle of my lacrosse season. Balancing school and lacrosse was hard. I was still deciding on what major I was going to declare so I filled my course load with chemistry, calculus and neuroscience that year just in case I needed to go pre-med.  Grandma was always on my mind.

Fast forward five years. I had graduated from Brown and attended graduate school to become a Physician’s Assistant. I think Grandma would have been proud.  I was working as a surgical PA and living 25 minutes from my parents - never did I ever want to live that close to my parents but it low key was the best.

And the work. It was exciting and meaningful. I didn't mind being – as my colleagues would say – “verbally assaulted by our arrogant attending surgeons in the OR and overworked for being new by working all the weekend and overnight shifts despite what our contract said.” It was worth it to me. Call me crazy. I loved the thrill of the unknown emergencies that would arise, and the calmness those shifts required of me. And I loved operating. Plus, it provided me with a comfortable lifestyle, living within my means, saving for retirement, dating, living with my best friend from high school, dreaming about the future while loving and appreciating the present moment. I was no longer stressed with schoolwork 24/7. And I got to see my family almost every weekend. I made it, I thought. I was in my late 20s and living the life of my dreams.

A typical day for me?

My alarm goes off for 4:45am, I snooze it. 4:47am, snooze, 4:50…crap! I shoot up from bed, my workout class starts at 5:00. quickly I throw on the workout clothes I’d laid out the night before. Sneakers on, water bottle full, sweat towel and keys in hand and I’m off. I sprint down to my car. I pull a U-turn and I speed down the road one mile to my gym. I'm 2 minutes late. Trust me, nothing has changed there, except now it is maybe 20, 30 minutes late everywhere I go. They already started the warm-up run. I throw my belongings down and jet to catch up with everyone as they jog around the building in the crisp morning air. I'm half asleep but I don't want to be anywhere else. The intensity of this gym sets the tone for my day. Lights are out, music is blasting, and 25 athletes are pushing their bodies to the limit. There are free weights, cardio, yelling, teamwork - everything that gets my blood pumping and endorphins released. 

Just like that and it's over, all too fast. 

I'm back in my apartment. I hop in the shower. I only have 20 minutes before I need to be at work. I'm rushing to the max. But I live for this. I make it to work, change into my scrubs and sneakers and I'm at the table for change of shift and sign out - where my overnight colleagues give us report on what happened during their shifts and updates on all current patients on our census.

 It was March of 2020. It had been four years since I did a semester abroad in Greece and traveled all throughout Europe. It was time to travel internationally again. So, me and a couple of friends packed up and we were going to Brazil. We made it as far as Florida when the world shut down. When we began having to realistically consider if we would be stuck in Brazil if we went, we knew we weren’t going. 

Back in Syracuse, New York, I returned to work, - there is no work-from-home for hospital workers, so, back to my typical days…

On my days off, I’d sleep in and spend the afternoons hiking, going on long runs, roller blading, boating on the lake and watching sunsets. May I remind you though, it's July 2020. Everything was shut down. There wasn’t really anything else to do but to enjoy nature and appreciate what was right in front of me. I had to lean into that side of me, I needed an outlet - I was still healing from a breakup - which was really the least of my worries. I wasn’t able to hug or kiss my dying uncle or my newborn nephew due to the steady surge of covid-19 cases. Watching the sunsets helped. There’s really something about sunsets isn't there? Might it be that sunsets are a reminder that no matter what happened in your day, it can end beautifully?And then, just like that, an opportunity to reset. 

The sunset on Sunday, July 19, 2020, did, just like that, end beautifully. But the reset took a bit longer.

I had been working a four-day stretch of 12-hour shifts. After work I took a long shower, longer than usual actually, and I’m so glad I enjoyed it because little did I know that it would be the last time I would ever be able to shower myself. 

I sunk into the couch, pajamas on and hair still wet, as I looked out the window and saw the beautiful sunset. I couldn’t help but want to get a better view and enjoy the warm summer heat. I grabbed a blanket and climbed the ladder up to the roof like I had done plenty of times before. I lay up there watching the sun escape beneath the horizon, and then, as it darkened, admiring the stars take over the sky. The quiet peacefulness of the dark night cleared my mind. I remember reflecting on how free I felt - as if the world were at my fingertips. I felt so alive and powerful, recalling how I had been able to contribute to saving someone's life earlier that night. I have the best job in the world, I thought. I truly found my calling. This is what I’m meant to be doing. 

When it was time to descend the 12-foot ladder in the darkness, I lost my footing and slipped. As I was falling, I specifically remember expecting to land on my two feet. I'm an athlete after all. 

Instead, all of a sudden, I was on my back on the hard cement ground at the base of the ladder looking up at the same starry sky that had just provided me with such peace. I felt immediate pain in my right shoulder and thought, “that’s gonna hurt like a bitch in the morning.” Nothing else hurt though and I quickly learned why. 

I went to flex my abs and put my arm out to crunch my upper body forward, but nothing happened. I brought my chin to my chest and saw my legs were not where my mind thought they were. My knees were bent, and my legs were crumbled next to me. I went to move them, and again, nothing happened.

 In that moment, I knew that I was paralyzed. 

And then an eerie silence took over....the calm before the storm if you will.

I fell on top of my phone, so Siri wasn’t registering to call 911. I didn't know how long I had to prepare myself for the chaos and uncertainty that was to come before someone found me and took me to the hospital.

I didn't know how long I had to reminisce about my 27 years of life. To think about how relatively privileged my life had been up until this point. Did I take advantage of it? Am I getting punished? Would I have done anything differently? I had just settled into my job after years of schooling. Was it all for nothing? Will I ever operate again? I was so embarrassed and in disbelief with what just happened. Can I rewind? To my surprise, even with all these racing thoughts, I remained relatively calm. I knew I could do more damage if I panicked. All I could do was take a deep breath and wait for everything to change. 

As I was about to enter the OR to go into surgery to decompress my spinal cord and repair my broken neck, I finally broke down crying for the first time. I was on the phone with my parents, terrified of what the outcome would be - my surgical knowledge knew there were huge risks. When I woke up from surgery and saw my mom sitting next to me, all I could do was smile because I was so happy to be awake and alive. But then, seeing my mom’s horrified face, reality hit. I felt so bad for causing my family pain. I knew they were so scared, and I apologized endlessly as each one visited me, one at a time - covid rules. I blamed myself for what had happened – four years later and I'm still working on forgiving myself.

As the days passed and complications arose, I became so angry. Why aren’t my nerves waking up? Why can’t I wiggle my toes? Why can’t I move my fingers? Just give me my goddamn fingers… anger turned into fury. 

Unable to move the majority of my body while lying awake but with a breathing tube down my throat, I had panic attacks almost every night. 

The tube eventually came out but because my diaphragm was affected by my injured spinal cord, I had to relearn how to breathe entirely. This was complicated by a punctured lung, pneumonia, and a mucous plug. I was so frustrated that I wasn’t progressing. Twelve days after my fall, it was my birthday, and I was begging my attending for a tracheotomy as I felt like I was drowning in my own saliva. 

The outpouring of community support I received through cards, flowers and gifts kept me from entering a depression in the hospital. There was this one card that I had taped to my wall, across from my bed and right under the tv - I am brave, I am strong, I am loved. I would recite that to myself dozens of times per day. I am brave, I am strong, I am loved. I had so much gratitude in my heart and was hopeful that if I put in the work, I would make a full recovery - because that's what life had taught me up until this point.  I was never the smartest or most athletic, but I knew how to work hard. 

This eager and hardworking spirit, though, led me to try to move my new body before I was ready. I was alone in my room most of the time - visitors were still very much restricted - but I had no time to waste. PT and OT sessions were so short, I felt like it was up to me to practice swinging my legs to the side of the bed. How was I ever going to walk in six months if I can't even do that yet, I thought. Well, this resulted in many falls off the bed which of course left me feeling disappointed as I lay stuck and helpless on the ground. Once, I couldn't reach the call bell, so I just had to wait until my nurse came into the room and frantically called a rapid response. I quickly had about ten sets of eyes looking down at me. I felt like a heavy piece of furniture that they had to brainstorm how to lift. I later earned myself a new piece of hospital jewelry and this one said “fall risk.” I feel like they should have known considering how I got to the hospital in the first place. 

When I left the hospital and entered the next stage of my recovery, rehab at Boston’s Spaulding Rehabilitation center, I became overwhelmed as I learned just how many changes I would have to make in my everyday life once I got back into the world. “Recovery” was so much more than just going to physical therapy. Bowel and bladder management, chronic pain, low blood pressure, medications, pressure sores, UTIs, short-term disability, long-term disability, SSI vs SSDI, wheelchair fittings, adaptive tools, and equipment. I felt so alone, constantly trying to explain to people what I needed when I didn’t even know myself. Realizing that I would likely be in a chair the rest of my life made me question if I wanted to live this life at all. That was terrifying.

 I've always been an optimistic person, so these kinds of thoughts were so foreign to me. the American philosopher Cornel West says that “there's a fine line between optimism and hope. Optimism is a naive mindset,” he says, and “hope is real.” 

With time, I got the daily help and equipment I needed, and I settled down into a routine. My personal care needs and daily tasks became a little easier. I eventually accepted that I would never get my old life back, and I discovered that I don’t have to walk to be happy - don’t get it twisted, I WANT TO WALK and my will to walk will never cease, but acceptance helped me develop a sense of real hope for the future. Not optimism, hope. Hope for a cure. Hope that if I keep my body strong and healthy, once there is a cure, I will be ready. Hope, in the meantime, for happiness and independence. 

BUT, even with all that awesome progress and hope, grief persisted. Why? Because grief never really goes away. 

Grieving is physically exhausting. For me, I'm constantly feeling sleep deprived but then feeling guilty for sleeping too much because then I feel lazy and unproductive. So, then I go on autopilot, but on autopilot you can only go as fast as the speed limit and in this body the speed limit is negative two mph. 

This injury, on the surface, is a physical injury, and because of this, rehabbing the physical body is the priority. But grief is powerful and is not just in the mind. If we do not tend to our grief it will reemerge in our body and limit our recovery. We’ll stay frozen and dissociate. Then, it will show up in our lives as depression, stagnancy, disconnection from our emotions and relationships.

I’m a big believer in the phrase, “you can’t heal the pain you refuse to feel.” 

Feel the pain. Feel the grief and all the emotions that come with it.

You will emerge. When the worst possible thing you can imagine happens, you have to celebrate that you made it through, that you survived. It’s wrong to say you find a silver lining, but you manage to continue on. Day after day. One foot in front of the other, figuratively speaking of course - maybe I should say one rotation after another.  You make it your life’s work to survive this thing. I wouldn’t say it gets easier with time. Time definitely does not shrink grief. Your grief will stay the same, but your world will grow around it. 

I still struggle with my trauma and my grief from losing the life I built. 

Just last month I was on the couch in my apartment. It's Sunday and I'm forcing myself to relax and do nothing - which often makes me feel guilty “I don't deserve to relax or have fun anymore,” my brain usually tells me. And this time it feels like I'm being punished for it. My insulin pump is malfunctioning. I was diagnosed with type 1 diabetes, before my injury, when I was 18 years old. Technology has come such a long way and if it weren't for technology, I doubt I would be living on my own. But technology fails us sometimes. And on those days, I fear for my life. The thing with malfunctioning insulin pumps, once you troubleshoot the problem, it usually takes a few hours to truly know if it is resolved or not. Well, a couple of cycles of that and I've spent all day troubleshooting. This means my blood sugar has been hanging out at 400 or above for more than 12 hours. My body begins to feel weak, my brain foggy and I'm dying of thirst - but I've already finished the two water bottles I've brought to the couch. It begins to get dark, and this is when I start panicking. I'm brought back to the feelings of being stuck on the ground and the embarrassment that I need help. But I can't get in touch with anyone and that only makes the panic worse. If only I could get up and walk to turn on the lights, walk to get more water, and most importantly walk to get more insulin. If only my fingers worked properly maybe my troubleshooting efforts wouldn't have failed. Now I'm hyperventilating and I have flashbacks of the panic attacks I had in the hospital. It's a complete ambush. Instead of trying to suppress it though, I let it out. I'm balling until someone is by my side. I need a hug.  

You see, grief never goes away. But my world around me has truly flourished. Every day brings new stressors and challenges, and every challenge is an opportunity to learn and to grow. To make myself a better person. Not every challenge is a grief ambush, thank heavens. 

When you first get injured, they tell you your recovery will be between six months and two years. I laugh at that now. I dedicated two full years to just recovery. My sole focus was to get as much functional return as possible while pushing the limits of independence. I was going to therapy every day. I was trying every adaptive sport and treating it as a cross training opportunity. I was talking to as many experts in the field and as many people living with spinal cord injuries as possible. I was listening to as many SCI podcasts as I could. I was researching and involved in countless research studies. And I was having surgery after surgery so I could at least use my hands to my advantage. I didn’t stop doing any of that after two years, but my priorities shifted. I wanted to get back to work. I wanted to provide for myself, contribute to society and have a purpose again.

I’ve been open about my mental health from the very beginning which really helped me understand that I have perspective and empathy and patience that I never had before. My career as a surgical PA was dedicated to fixing the physical body but now more than ever, I know there’s power in healing the mind. Which led me to accept a position as a psychiatric PA. 

That has also brought its own challenges but I'm learning that this injury is a constant eb and flow of adapting. 

I still sometimes can't help but look at others my age and think how easy their life is compared to mine, how good and normal they have it. But then I look at mine and hell, some days I get more accomplished in one day now than I did before my injury.

Next week I'm being flown out to DC and then LA for a new job I took in the adaptive sports industry. You see, the disabled community is never a community you aspire to be in, but once you are in it, you realize how badass your peers are and you want to be involved with them as much as you can. I do. They are a community that lift me up like no other. I feel seen and heard. I never feel like a burden. So, when Heidi and Jess asked Stefan and I to start a support group for people our age, it was an easy yes. 

I miss my old life so much. I miss my relationship with my old friends, my relationship with my family. I miss being a naive optimist. But I think some of that comes with the territory of growing up. I was going to miss those things whether I got hurt or not. 

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

Asking for help is difficult, but it’s the key to a better life.

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.

What Emily Dickinson Said About Hope

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!

My Favorite Season: Love

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