Professor Murray Brookes and his daughter, Alison, in Wales, 1962, watching a Punch and Judy show.

By Alison Rosalie Brookes, MD

I have held only one person’s hands recently; and hugged and kissed only that one person, but I have been growing deeply fond of and emotionally wrapped in the arms of, lots of people whose faces I have never seen. People speaking in Spanish and sometimes in English, have been telling me their stories in the hope that I might be able to help them a little bit. They have been breathing for me into their cellphones as I Iisten for wheezes, and they have texted me photographs of their hands and feet. They have trusted me with their concerns and shared their fears. The fear of going to work, and the fear that staying home will cost them their livelihoods. The worry about finding enough food to eat, and how much they miss their loved ones, alone in the hospital. Sometimes the worst has already happened. I have been laughing with them as well, mostly because my Spanish can be quite unintentionally funny, praying with them, receiving their blessings, and to be honest I have actually cried a few times with them too.

I usually work in a miraculous little gem of a medical outpatient clinic; hidden away in plain sight in the shabbiest, oldest building of Boston’s most beloved hospital. There, we provide wonderful medical care to people who come from all over the world, and also from right around the corner. When COVID-19 descended upon us, our clinic was converted overnight into Boston’s first “RIC”, (Respiratory Illnesses Clinic) and suddenly we were confronting its reality head on. That is a story for another day, but I am here to tell you about Chelsea.

As an older physician, I was deployed to work remotely; backing up the nurses taking calls from people who receive their care at the Chelsea Health Center. My day begins at about 8.30am, with a list of messages from two nurses whose faces I have never seen, but who have become beloved friends. For 8 weeks now, we have shared our days, good and bad, and we have been bearing witness to the way that this virus does, most definitely, discriminate. It discriminates most viciously against the people we speak with, all day, from the safety of our kitchens. The essential workers, and their families, have suffered greatly. We might not, in normal times even really see them or notice the work they do, but we all depend on them to supply our food, our power, our sanitation and other public services. They care for our loved ones in nursing homes, and they clean the buildings in which we live and work. They tend to be poorly paid and live in crowded conditions. They bear a burden of poor health that puts them at much greater risk of becoming infected with, and succumbing to, the worst effects of this virus. Our job is to answer their phone calls and listen to their concerns, and then we do whatever we can to help. We never cease to be humbled and inspired by the enormity of what our patients are going through, and the fortitude they need to withstand it all. 

Suddenly, ensconced in this new life, gratefully immersed in the embrace of Chelsea, where the poetic Spanish language of South America mixes surprisingly well with the grittiness of life in Massachusetts, my father, in London, known to all of us as Daddy, did not wake up. The early morning call came from my sister and two brothers, who had miraculously been allowed into Daddy’s room at the care home, in London. They had not seen each other, or Daddy, for 6 weeks, and they were all unrecognizable in full PPE. But they were there with him and I am sure he could hear them singing together and could feel them holding his elegant, long-fingered hands. I wished I could hold his hands too, and kiss him, but instead I whispered nice things into Daddy’s ears, Facetiming on my brother’s cellphone.

 It was a long day, tranquil, with some funny moments, because it was Daddy after all, who was always apt to suddenly burst out laughing at inappropriate moments. Yet we all knew what nightfall would bring. In the evening, as the sun was thinking about setting, and Venus was clearly visible in the night sky, my sister and two brothers decided to sing Etz Chayim Hi, (The Tree of Life,) and a few of Daddy’s other favorites, including a really soppy old song called Whispering Grass. A tear ran down Daddy’s left cheek and the look on his face was the same as it was in a photo we have always loved, from 63 years earlier, as he watched Mummy signing their Ketubah. Daddy’s room had gone silent, and the red vixen who had been curled up all day, at the foot of a blossoming cherry tree outside the bedroom window, had disappeared. We had had the enormous privilege of being with our father at the end of his long, eccentric and brilliantly colorful life, and he had not suffered. All of us were conscious that death in the time of COVID was not usually like this.

 I was very sad not to be standing side by side with my siblings at Daddy’s funeral. There were many people present, Zooming in from England, Israel and several states of America, and yet, according to British Orthodox rules, we didn’t count as a minyan and so were not allowed to say Kaddish. The next day we had the most wonderful Zoom-shiva, which was attended by an even wider variety of people, including my new colleagues from Chelsea MA, whose faces I still have not seen because they modestly kept their video dark. We sent Daddy off in laughter and tears the way he would have liked it. We even managed to say Kaddish, despite it being against the strict rules that Daddy followed, because honoring your father sometimes involves a little disobedience.

A week after Daddy died, I was back at work in my kitchen, virtually in Chelsea. When patients told me about their relatives, sick with COVID-19 in the hospital, I was pierced with emotions even more poignant than those of a week before. I know what it’s like to not be able to hold your father in your arms as he passes away, but I cannot imagine what it is like to suffer the pain of not being there at all, knowing he is alone in a hospital with no visitors. I feel deep concern and compassion for the people of Chelsea, whose lives I have encountered as a result of this awful pandemic. Their culture revolves around “cariño” which is the Spanish version of our Jewish “chesed”. I am inspired by my heroic colleagues working on the frontlines, and gratefully humbled by the patients for whom I am caring. And, although I never thought I would say this, I am grateful for modern technology too.

Originally published in The Jewish Journal (Salem, MA) in May, 2020

 Alison Rosalie Brookes is a practicing physician in Boston, MA.

 By: Keisha Greaves

You’d be surprised what you take for granted. Those things you don’t even think of but are naturally a part of life. Like now, in COVID times, when we aren’t allowed to hug, or even see, our friends. 

My feet were planted on the low-cut grass in the outfield, my usual spot. A girl from the opposing team took her stance at bat. She squatted and furred her brow with focus. When the pitcher released, her bat met the ball with a powerful smack. It whizzed far to a place where I knew I could reach it. I squinted my eyes and leapt toward the ball, making the best (and only) catch I’d gotten all season. “OUT!” My fellow teammates cheered in excitement as I smiled from ear to ear. It was time for our turn at bat.

Afternoons in elementary school were spent this way, on the softball field swinging my bat and gleefully whizzing from base to base until I stole home. Stealing bases turned into stealing glances at crushes as I ran between floors for classes at my rather large high school. Before I knew it, I found my second home at Framingham State University where I spent my days in fashion and merchandising classes, sewing bold pieces for the runways (leather polka-dot blazer combos and tulle lined mini-dresses are some of my favorites), planning Fashion Club events and making tons of friends a long the way, especially in Black Student Union. My nights were equally eventful as my girls and I got dressed up to Beyoncé blasting in the background and made our way to parties and events.

I loved to sew, modelling my designs from the likes of Kimora Lee Simmons and Betsey Johnson – my favorites. My admiration for Kimora came during the peak of the Baby Phat age. Her line was of bejeweled and her clothing was embroidered with her signature Siamese cat logo – often in gold. I loved that she was a boss that had it all. She managed her business and clothing line and never tried to hide the fact that she was a mother. Betsey was the funky that I needed in my life. Her style was bold and unexpected. I adored her for her layered prints and the creativity that embodied her inner child. I’d always been recognized for my style, a casual yet chic mix, and in part, I owe it to those two. I adapted my looks in my own ways, often times pairing a creative tee with a blazer or strutting around campus with an eye-popping, eighties-inspired dress, extra tulle with a dash of cheetah print. 

I was living my life on my terms and loving it. I was Keisha Greaves: agile, loving, creative daughter, sister and friend.

After college graduation, I found myself back in my home town of Cambridge, Massachusetts to earn my MBA. While in school, I put my bachelor’s degree in Fashion Merchandising to work. I was an independent merchandiser for a company, travelling from store to store to ensure that brands were represented accurately in their respective places in department stores and boutiques. Having this job was a dream come true. It was something I loved to do, and the flexibility allowed me time to make it to my classes and study for my second degree.

One day, I’d been walking around the supermarket with my mother and sister. We’d been chatting and shopping, basking in the quality time of the necessary task, when out of nowhere I tumbled onto the floor. It took everyone by surprise, including me. As I sat on the cold grocery ground, my legs seemed to have left the rest of me. It felt like they’d betrayed me, and the rest of my body was upset about it. I became dead weight. I couldn’t lift myself. It was the most confusing experience I’d ever known. My mind told my limbs to do something that they just wouldn’t do. I needed my mom and sister to help bring me to my feet. 

I chalked it up to needing to lose weight and did my best to brush it off. I was sure that was the issue. Until it happened again, and again and again. My legs felt weak and I was always on edge that I would be on the ground without warning or my consent. Then, my arms followed suit. I remember lifting my arms to reach for a snack in the kitchen cabinet. That feeling of perplexity and frustration from the grocery store returned as I struggled to make my hand meet the box. Then it happened during my regular exercise time, too. I popped in my “Walk Away the Pounds” DVD. Following Leslie Sansone to step up, step down, slide, then – I couldn’t reach. I couldn’t understand it. I felt like I was fighting against a ton of weight pushing my arm back down. Something wasn’t right. My mom and I agreed that I should go see a doctor.

We made an appointment. And then another. They both asked me to do the same: sit on the table and raise your leg. Both times, I couldn’t. I still told myself that I just needed to lose weight, but the looks of concern on their faces as they lifted my leg for me made me worry. After seeing an orthopedist, I saw a neurologist and then the real work began: testing (and a lot of it!). The EMG required sticking a needle in my legs and moving them about the muscles to see how they reacted (and I had to do that not once but twice!). I was asked to keep still and calm as I was pushed into a tight tube for my MRI. The EKG had me hooked up to a bunch of pads and wires. The entire process was draining and uncomfortable, but the biggest test confirmed my diagnosis: the muscle biopsy. It was a surgery that I was wide awake for. On my back on the cold operating room, they injected my right leg with anesthesia. I made sure not to move as they sliced it open and extracted a chunk of my muscle. It was weird to be awake during this time. If it hadn’t hurt so much, I probably would have tried to reach out and touch the muscle sample as they prepared it for diagnostics. They closed everything up, gave me a pair of crutches and sent me on my way.

I thought I’d be going to class that evening, like usual, but the pain and grogginess of the surgery proved otherwise. I was bummed to have to share the process with my teacher; before I did, none of this had seemed real. But it was certainly becoming all too real.

About a week later, I got a phone call that would change my life as I knew it. Dr. Wang’s voice was firm. She declared that I had muscular dystrophy; Limb-Girdle Muscular Dystrophy (LGMD) to be exact. The phone call lasted a couple of minutes. She’d share more about it when we met next in person.

 I hung up and rushed to Google. I had to know what this was, what it meant and what on earth would I do. I learned that this particular type of muscular dystrophy impacts the body from the shoulders down to the legs. I learned that most of the folks with muscular dystrophy are males and are usually diagnosed as babies or during adolescence. I learned that it’s progressive and that there is no cure.

I was in a mix of disbelief and confusion. “How long am I going to live?” I questioned. “Will I have to be in a wheelchair?” I wondered. I shook my head “What if she’s wrong? This can’t be my life. It has to be something else,” I finally decided.

I began to shut everyone out – sinking into my new reality and the onslaught of feelings that came with it. I was a very private person, keeping most things to myself and only displaying a bubbly personality with lots of laughter. I didn’t feel much like laughing now, so I buried myself away.

My immediate family members were my support. I’d read that a healthy diet and exercise could help keep my new situation at bay so my cousin and I joined Weight Watchers. I spent time with my mother and sister. My mom accompanied me to doctor’s appointments. I made it to class, sometimes on my own, other times with a cane. I continued to work as a merchandiser, as long as I was able. I lost 36 pounds and I felt like I would be able to somehow conquer this thing!

I only realize now that I was still in denial about it for a few years after I received that phone call. I thought I could diet and exercise it away, ignoring the reality that it was a progressive and all-encompassing disease. Though I walked with a cane many days, whenever I had an important meeting or interview, I’d tell the manager I’d recently sprained my ankle or had gotten into a car accident. I never wanted to verbally acknowledge what was happening.

I confided in a close friend about what I was experiencing. He encouraged me to let the cat out of the bag. Hesitantly, I opened up my laptop and just started spilling out my thoughts onto a page. It wasn’t until I was stroking the keys non-stop that the truth finally set in my heart. “Wow, I have muscular dystrophy,” I thought. Then, I said it to myself. “I have muscular dystrophy.”  It was like a weight was lifted from my mind. 

I read what I wrote back to myself and with the new acceptance of truth, I thought maybe it was time to share it with the world.

 “…I told my employer that I have muscular dystrophy last year and it took a weight off my shoulder to be honest with my boss. I feel so relieved. My condition has progressed since then. I am regularly tired, need the use of a cane, still have issues walking and not getting tired and occasionally need a wheelchair. You don’t know how it feels until it happens to you. I often feel like it controls my life….”

I posted it on my Tumblr page and shared the post on Facebook where all my friends, family and acquaintances would learn about the secret that I’d been holding onto for years. They read my post and supported me with tons of positive feedback and “thank yous” for finally sharing my experience.

It felt warm. My family – my blood relatives and my Facebook family – continued to be a light and check on me as the symptoms progressed. It was really nice, but after a while I started to feel like they really didn’t get it. They didn’t know what it was like to fall constantly or not be certain if you can even move day by day. They didn’t realize that I had to call ahead to go to the club at night, to ensure that they had a functioning elevator so that I could make my way up to groove to the music. 

I started reaching out to others in the disability community via social media and began cultivating a new sense of family. Others who “got it”. It felt like I was finally understood and even better, that I was not alone. 

Now, five years later, I only know that I have LGMD. The doctors can’t put their fingers on what subtype yet, but they know that at some point this thing could affect my heart. Echo-cardiogram tests are pretty regular for me, to let them know that my heart is still in working order. It’s certainly scary but it has become “my normal”.

Living with LGMD is still new to me. Every day, I wake up not knowing how my legs are going to feel or if I’ll feel them at all. I don’t know what pain I’ll have as I try to leave my apartment. I walk gingerly, hoping not to fall, afraid that I won’t be able to pick myself back up. It’s made me realize my internal strength despite the weakening of my limbs. I didn’t think I would have so much strength to continue on after my diagnosis in my early twenties, but I somehow figured it out – and flipped it into a motivating organization. I had the power of resilience and positivity. If I didn’t have it before, I developed a strong sense of empathy, really understanding that people everywhere struggle with things that the outside world cannot see. I was one of them.

I look back and feel like I took things for granted: stealing bases on the softball field, running up and down the stairs with friends in high school, sewing my one-of-a-kind designs to strut around in and dress my models. But there’s no way I could have known. My new normal doesn’t include any of that. Instead, it includes a lot of time with my Personal Care Assistant (PCA) who helps me get in and out of bed, the shower and around town. It includes plenty of trips to the doctor and physical therapy. And sometimes, lots of stares from people wondering what a young millennial is doing walking around town with a limp and a cane. 

That’s all okay. My new life is my life. I’ve accepted my new normal. I’ve regained my bubbly personality and have become a source of positivity and support for others in the disabled and diseased community through my organization and clothing line, Girls Chronically Rock. My smile has returned, knowing that I am still fulfilling my dreams. My path looks a little different than I envisioned but I am happy. I still hang out with friends at bars and restaurants and enjoy my favorite foods and reality TV. I have no problem belting out my favorite Beyoncé songs. I am a business owner who loves the work that I do. I’m happy. I’m loved. I’m whole. I won’t take where I’ve come for granted. Not one bit!

 There’s no cure or pill that will fix it. My muscular dystrophy isn’t going anywhere. It has its way of controlling some of my life, but it isn’t who I am. I’m still Keisha Greaves: loving, creative daughter, sister and friend. I’ve even gained a few more titles: graduate, survivor, entrepreneur, speaker and advocate. This didn’t take my life, it gave me purpose behind all that I do. Pressing on after my diagnosis is the hardest thing I’ve ever done, but I’m much stronger for doing it. My will and the support of my family keep me going.

 In a way, I guess that’s how everyone is experiencing life right about now. As I’m writing this, no cure or vaccine for COVID has been created, and when I flip between the news stations, it seems that it isn’t going anywhere anytime soon either. It does, similarly, have its way of controlling our lives – mandatory stay-at-home orders, masks and other protective equipment, forced distance between family and friends and then some. Post-pandemic, we’ll all have gained some new talents, skills and titles – becoming a little bit more survivor and superhero. My advice is to allow it to give you purpose and set your true priorities into perspective. This might be the hardest thing we have ever done, collectively, but how we support each other is what will keep us going.

I want to remind you to never underestimate the power of your desire. If you want to do anything badly enough, you can. Everyday, I ask myself  “How do I decide I want to live?” My PCA helps me from my bed, gets me ready for the day then I conquer it, with a smile. That’s how I choose to live now, each and every day.

Keisha Greaves is a business executive, fashion designer and activist and the founder of Girls Chronically Rock. She is living with Limb-Girdle Muscular Dystrophy, diagnosed 5 years ago when she was 24.

Watch Keisha tell her story live here

Photo credit: Sarepta Team, with permission from Keisha Greaves

By Faith Wilcox

When we are isolated from our family and friends, the sparkle of life can diminish slowly. For many, the lack of a familiar daily pattern and regular interactions with colleagues can be unsettling. When these conditions are combined with uncertainty about the full impact of COVID-19 on our future security, we can begin to despair. Questions swirl in our heads. Why is this happening? How will our families stay well during this pandemic? How much will this worldwide crisis effect our financial well-being?

For those of us who have experienced a life-changing illness or accident, many similar feelings and questions arise. Being treated for an illness in a hospital is isolating physically and emotionally. Being pulled from our familiar daily life and spending weeks recovering in a medical setting or at home is upsetting. We may worry if we will ever fully recover or if months of more treatments are ahead of us. We may be anxious about our ability to return to work one day.

These worries are painfully familiar when I recall my completely unexpected renal cancer diagnosis, the anxiety I felt prior to my surgery, and the long months of recovery in my home. After my surgery, family and friends dropped by and visited me periodically, my husband was attentive and loving, but nonetheless I felt very isolated from the beat of life. And the ever-nagging question, “Will my cancer recur one day?” kept me in a state of anxiety.

What rescued me from despair? The opposite—hope. Feelings of hope started to stir within me after I slowly recovered from surgery; when I witnessed signs of nature’s rebirth in the spring; when I was able to return to my work and be engaged again. Yes, anxiety about my future health lingers, but I’ve decided to hold onto hope like a life raft in the vast sea of uncertainty.

Life, once again, has taught me new lessons:

• Hardship, anxiety, and despair will likely be on our doorsteps one day;

• What matters most is how we deal with our adversity;

• We could run away from our troubles, hide, or despair; or

• We can listen for whispers of hope in the voices of the young;

• We can see hope in the blossoms that bloom after a long, gray winter;

• We can find hope when a bright star sparkles on a moonless night.

So now as we face the uncertainty of COVID-19, let’s do our best to find unexpected benefits like how we are gathering frequently with family and friends in live video events; let’s hold onto hope for medical researchers and scientists to develop a vaccine; and let’s hope for the return to active and rewarding lives ahead.

About Faith:

Faith Fuller Wilcox believes that self-expression through writing leads to healing. Faith learned this truth firsthand when her thirteen-year-old daughter, Elizabeth, was diagnosed with a rare bone cancer that took her life. Faith’s journey from grief and despair to moments of comfort and peace taught her life-affirming lessons, which she shares today through her writing. Faith is the author of Hope Is A Bright Star: A Mother’s Memoir of Love, Loss and Learning to Live Again that will be published in June 2021. Faith is also the author of Facing Into The Wind: A Mother’s Healing After the Death of Her Child, a book of poetry. A longtime resident of greater Boston, Faith leads a journal writing program at Mass General Hospital for Children for patients and their families designed to give participants the opportunity to express themselves, alleviate stress, celebrate victories, and honor their grief. As a member of Mass General Hospital for Children’s Family Advisory Council, she works with parents and medical staff to improve the lives of patients and their families.

By Amber Soucy

Pressure. I can feel it.

Mentally: time constraints limit my bedside contact with patients. I need to be quicker, better, more efficient. But how? Policies are changing, protocol algorithms are rearranging, and all the while, more and more patients are deteriorating.

Physical pressure: mask straps digging into the skin behind my ears, and hard, non-forgiving plastic face shields scrape and chafe my forehead and temples. My skin is breaking down, and behind that mask and shield, emotionally, so am I.

Emotional pressure: I’m downtrodden. I want to give up but can’t. I must persevere, I must continue on. Anxiety-ridden days roll into sleepless nights. Oxygen saturation alarms fill my ears. The sounds are deafening, and then the silence is the same once I’m alone in my bed. I can’t escape the loneliness. I’m overflowing with grief. Could I have done more? Could I have saved them? Would my efforts have made a difference?

Pressure, from every angle; it’s just too much. I’m weighted down by it. Before nationwide restrictions were enacted, us nurses were just dipping our toes in and testing the waters. We still had control. So then we sat down at the water’s edge and dangled from the knees down. As individuals, we held our own; we exerted our power and our rights. We were prepared.

Then, there is an abundance of overtime shifts. I can’t justify sitting on the sidelines feeling helpless, cautiously observing from a distance, especially knowing that I possess the training that could potentially make a difference. I can’t watch from the shore as my team struggles to swim against the current. So I dive in headfirst, not knowing what forces will change the tide mid-swim. 

And boy, do those tides change. I paddle and paddle and swim in a circle, scoping out the scene to try to find the safest route to shore. But there isn’t one. It’s sharks to the left, with glimmering teeth and starving eyes, just waiting for me to make my move so they can pounce and eat me alive. Then there are the others, my friends, my coworkers; they’re all screaming and flailing their arms in the air, attempting to flag down help or to alert others to send assistance. But there isn’t enough personnel on the shoreline. There aren’t enough resources to throw everyone a life jacket, and there isn’t enough manpower to allocate a team to retrieve and resuscitate everyone drowning. It’s every man for themselves.

I’m viciously treading water. My head bobs up and down above and below the water. I’m barely hanging on. I’m drowning. And as I look around, everyone seems to share the same panic-stricken look. Although each is individually struggling to survive, we’re all in this together.

But then a boat arrives. They extract me from the turbulent waves and shark-infested waters. They wrap me up in a blanket and repeatedly tell me that “it’ll all be okay; you’re safe now.”

But am I? Am I safe? Are we all safe? Or are we going to unexpectedly go swimming again in the same uncertain waters in the Fall?

 Amber Soucy, MSN RN works full-time as an Intermediate Surgical Trauma Registered Nurse and part-time as a Clinical Instructor for nursing students at a Level I Trauma Hospital in Boston, Massachusetts.

By Audrey Stern

I am sitting at a small table across from Ralph, a 92-year-old resident at Newbridge on the Charles assisted living facility in Dedham, MA.  After hearing about the Elderwise Project, he graciously volunteered to be interviewed and welcomed me into his apartment.  His is my first interview and I feel nervous about how the process will unfold.  I fumble with the microphone and tape recorder, double-checking that they are working.  Although I come prepared with a long list of questions to spark conversation about his life and experience with aging, my thoughts turn to the enormous task of eliciting meaningful stories and wisdom in less than an hour.  How will I know what is most important to ask about?  Will Ralph feel comfortable sharing personal information with a stranger? 

            I begin by asking Ralph what brought him to assisted living.  As Ralph takes me back in time, from retiring on the Cape after a successful teaching career to being a caregiver for a friend with Parkinson's Disease, I am drawn in to his stories.  With each subsequent resident interview, I am increasingly able to set aside the scripted questions and let my genuine interest guide the dialogue.  Most of what I have to do is be present and listen. 

            Elderwise, a pilot project on aging, was launched by Health Story Collaborative (HSC), a growing non-profit organization founded on the belief that storytelling promotes health.  Established by Dr. Annie Brewster, an internal medicine physician at Massachusetts General Hospital, HSC is grounded in scientific research that supports the health benefits of narrative, not only for individuals telling their stories but for listeners as well.  Since its inception in 2013, HSC has provided various platforms for individuals to share their experience navigating illness, with the hope that shared stories can be psychologically healing and provide valuable lessons to other people and families facing health challenges.  With Elderwise, the focus is on aging rather than illness.  However, in the same spirit of HSC, the goal is to provide participants with a sense of purpose, a feeling of connection, and a chance to be heard. 

            Ralph and the other five contributors to Elderwise, interviewed in 2019, all reside in the assisted living facility at Newbridge, a predominantly Jewish, well-educated community.  Beyond those similarities, though, they come from diverse backgrounds.  With an age range of 76 to 96 years, they have lived through myriad triumphs and tribulations, which gives them a perspective that most younger people do not have.  They not only have familiarity with aging but also knowledge about how to survive difficult times.  

            Just as their life journeys have been unique so too has their experience with growing older.  Some residents referred to the positives of this phase of life, such as living closer to family and having time to explore hobbies and learn new skills.  That said, none were immune to the difficulties of getting older.  They each faced stressors in one form or another, such as illness, reduced mobility, and loss of loved ones.  Several participants reported that, although they appreciated the care, transitioning to assisted living was an adjustment.  They missed the freedom to come and go on their own schedule and the close friendships they had in the past.  Some residents alluded to feeling lonely at times.  By and large, though, they were coping with the challenges of this stage of life and adapting well. 

            The residents' resiliency can be traced to their ability to draw upon lessons learned from earlier events in their lives.  For example, growing up as an only child prepared Leonora for living alone.  Although she envies people with siblings, she believes it is important to make the best of your situation, do what you can do, and not dwell on what you can't control.  She is not able to walk well anymore, but she is able to keep up with her quilting.  Having faced discrimination, Saundra is not afraid to speak up for herself and others.  And Evelyn, who never married, emphasizes the value of good friends.  As a lifelong traveler, she credits the high points of her life to a willingness to take chances and try new things.

            I walked away from each interview surprised by how enriching it was.  As much as I understood the value of listening to people's stories, I had not anticipated the extent to which their advice would speak to me.  I had volunteered for Elderwise to do good for others, hoping to be a supportive presence and make a small dent in combatting the loneliness that can occur in assisted living facilities.  Yet at the completion of the project, I felt as if I had gained the most. 

            Now more than ever, I am grateful for having had the opportunity to meet these six individuals and listen to their rich insights.  As COVID-19 has hit older people particularly hard, visitors are no longer allowed.  Moreover, like many nursing homes and assisted living residences, the Newbridge community has tragically lost some residents to the virus, including Bunny, a 96-year-old woman who sat with me to share her stories for this project.  Despite chronic health impairments, she welcomed the opportunity to help out.  In doing so, she left behind a moving reflection on her life and a lasting legacy for her family. 

            After more than nine weeks of quarantine, the residents at Newbridge are still confined to their apartments.  Meals and mail are disinfected and delivered to their doors.  Programming is broadcast through a cable channel.  It is a lonely time with no known end point.  I cannot help but worry about how they are holding up.  

            Recently, I picked up the phone and called Ralph.  We hadn't spoken in more than four months when I visited with photographer, Jennifer Jordan, who took pictures of the residents for the project.  Coronavirus wasn't a known threat back then, not in the U.S. at least.  I asked him if he remembered who I was.  Of course, he said with a warm laugh.  He explained that his days were long and mundane, filled with a lot of television.  Occasionally, he met up with a resident for a social-distance chat outside.  There were other catastrophic diseases he had witnessed in his lifetime, such as polio, but the effects of this virus might just be the worst.  But then Ralph shared an optimistic message, reminiscent of advice he gave during his interview:  "Life has a way of turning around.  Look how far we've come since mid-March.  We will get through it." 

            As our elders must isolate for their safety, the repercussions are felt deeply among all of us.  Without social support and opportunities to contribute positively to their communities, older people may feel invisible or disposable.  And we lose too.  We miss out on learning from their stories and wisdom.  The mission of the Elderwise Project, to celebrate and honor the voices of older people, has never felt more important.  

 Watch video here

Credits: current-day photographs by photographer Jennifer Jordan

 By Diane Kaufman

Can a person be not okay and okay at the same time? I want the answer to be “yes” and I do believe this is possible. I want it to be because I am not feeling okay. The coronavirus pandemic is a reality.

Here’s a glimpse into my mind’s confusion. It starts like this: I am a child psychiatrist and I am supposed to feel and be okay. This is what my “tyranny of should” tells me. I mean if I don’t feel okay how can I be of help to someone who feels the same or even worse? My inner critic tells me that I should be coping par excellence and not be grappling with anxiety, fear, and sorrow. Or if I do, only a little, not for too long, and it must not interfere with my life. My inner judge also tells me compared with the world’s sorrow and families who are burying their loved ones in the hundreds of thousands, what do I have to feel sad or bad about? Don’t you feel ashamed of yourself? Stop the insipid wallowing. Who do you think you are? What if your colleagues knew you felt this way? Better keep those thoughts and emotions hidden. Be silent. Show only strength. Be a role model of resilience.

I’m a mother and isn’t it my job to be strong for my daughter?

As a grandmother aren’t I supposed to bring happiness and not a hint of sadness when I arrive for my 6 feet away and face mask visit?

As a sister what good does it do to share my worry? Won’t it make my sister and brother feel worried, too?

My friends have their own struggles. Why burden them with my problems? My imaginary problems at best. They have enough of their own problems. Besides I want them to think I’m fine because being fine is being strong.

So there goes the closed circle of my mind looping back again and again as it fights against its own sense of real not okay-ness. I want to be okay. I want everyone and everything to be okay. But I and We and It are not okay.

When I wrote those words, “But I and We and It are not okay,” I could feel the tears begin to well up in my eyes. My tears that I have been so holding back want to pour down and join into the rivers of sorrow that are being felt and lived by so many.

Does that make me weak? Does that make me incompetent? Does that make me a failure as a mental health professional? If being okay means pretending all is alright when it isn’t, I guess the answer is yes.

My mind also has a wiser and more compassionate voice. I want to learn, practice and share a new definition of being okay. That being okay is being okay with not feeling okay. Being strong is accepting I can also feel weak. Being strong is sharing my uncertainty. Being competent is a professional skill that does not erase my being human or make my human beingness irrelevant.

There is tremendous relief and freedom in saying what is so. Not hiding from the truth. No longer lying to myself and/or others. I am not okay and that’s okay and I know I’m not alone in feeling this way. It’s important to honor reality. To stop and feel the enormity if even for just a moment of what is happening in our world. We don’t have to be afraid of feeling. Release it a little at a time. Be comforted in knowing you are not alone. Seek care and support wherever that may be – from family, friends, inspirational quotes and books, faith, and from the beauty of nature. We will recover. Life will go on. A vaccine will be created. Social distancing will continue to keep us safe. And all that does not take away the right I have, that we all have, to feel our feelings whatever they may be.

I love these words by poet Walt Whitman, “Do I contradict myself? Very well, then, I contradict myself; I am large – I contain multitudes.”

I will dare and dare greatly by saying I am not okay because saying this aloud respects who I am, makes me stronger, shows my humanity and weaves me into the fabric of life and life’s people at this time of the coronavirus pandemic.

I am okay with feeling not okay. Resilience is not just about bouncing back. It’s acknowledging and accepting that yes, I am feeling down, but knowing this feeling does not mean forever. Once I see and feel where I am without judgement there is an opportunity to soothe the pain by telling my true story, to stop feeling ashamed, to be cared for by another, and to open my heart and mind to experiencing the multitudes of being that I am, the multitudes of being that we all are. This moment now inspires our better tomorrow.

Gratitude brings tears to my eyes. Tears shed for joy and not for sorrow. Another contradiction? Not if I allow myself to become large enough to embrace, endure, and accept all that life is.

Be Safe. Be Strong. Together We’ll Weather The Coronavirus Storm.

Written by Diane Kaufman, MD who is a poet, artist, and Child Psychiatrist, this article was originally published by ASHA International.  Diane is a suicide survivor, has Bipolar II Disorder, serves on ASHA’s Board of Directors, and is founder of Arts Medicine for Hope & Healing and Creative Life Lines. 

A Q&A with Diane Atwood, Founder of Catching Health, and the Conversations about Aging Podcast

Val Walker

Diane Atwood was a health reporter at WCSH-TV for more than twenty years, and later a marketing and public relations manager for Mercy Hospital in Portland, Maine. She is now a full-time blogger and podcaster on health issues, specializing on aging and isolation. Diane Atwood is the founder of Catching Health, and the podcast, Conversations about Aging. She describes her mission as “Health reporting that makes a difference.”

Introduction

Diane Atwood is a master interviewer, profiler, and journalist, well-known in Maine for her deep and richly detailed conversations with her interviewees on her blog and podcasts. I was honored that she recently interviewed me about the release of my new book, 400 Friends and No One to Call.

Indeed, it was Diane’s interview with me that inspired me to interview her. She was, quite frankly, a wise and seasoned interviewer who could teach me and others about her craft.  I have always found profiling and interviewing people to be a fine art—particularly if we could capture the essence of that individual through their stories revealed through thoughtful and leisurely paced conversations. I have a story to tell about how Diane interviewed me, as it sheds light on how she works her magic in these times of rushed and fragmented conversations in our digital age.

On March 18th, the day of my interview, everyone in the Northeastern US was scrambling to prepare for their COVID-19 lock down. I was in the throes of adjusting to (and grieving) the drastic loss of dozens of speaking engagements, book signings and classes—indeed, the loss of my business-- and a terrible time to release a new book! I hardly wanted to be interviewed at all, as I still had not had time to wrap my mind around how COVID-19 had radically changed the meaning of my book, if not the magnitude of my book’s message about loneliness and isolation. I didn’t feel prepared to speak confidently about breaking out of isolation because I was clueless about how I would pay my rent next month. How dare I speak as an expert on social isolation and loneliness when I felt cut off from my clients, networks, colleagues, and friends who were all as isolated as I was?

But within minutes of our phone call, Diane put me at ease, welcoming my book into the world, inviting me to tell my story--the good, the bad, and the lonely--about why I wrote my book and what my message meant during these pandemic times. Her steady and friendly approach, gently probing, permitted me to trust her judgment and guidance as we delved into profound storytelling. Diane’s deep exploration helped me grasp a new perspective of my book’s message in times of social distancing, giving me a clear vision of how my book was going to help people survive isolating times. Her Q&A with me etched out the ways my life’s work was meaningful and vital at this time, and I am deeply grateful for her gift as an interviewer, profiler and storyteller. Her interview with me left me with a beautifully unique portrait of my essence and my life’s purpose, not just a description of my book.

With this first-hand experience of being her interviewee, I can attest to how Diane shares her gift with older seniors who are eager to have their life story told and their vibrant essence celebrated and shared. Her podcast series, Conversations about Aging, reflects her passion and dedication.

A Q&A with Diane Atwood

Val: What got you interested in doing interviews with seniors in their homes?

Diane: A couple of years ago, I went to a conference about the isolation and loneliness of seniors in rural Maine to report on this topic. I already knew that loneliness was deeply entrenched in rural society. After attending the conference, alarmed about seniors living alone in the empty, sparsely populated landscapes of Maine, I felt a call to visit seniors in their homes--just to engage them in conversation, storytelling and reminiscing. Perhaps I could help them feel less lonely this way. It was clear seniors needed meaningful and personalized conversation, and they longed to share their life experiences with others. I decided to start a podcast where I could post interviews with people over age sixty, calling it Conversations about Aging. And further, having deep, long conversations for up to two hours might be particularly rewarding—mutually speaking.

Diane with interviewee, Wayne Newell

Val:  What do you especially enjoy about interviewing seniors and creating podcasts of their stories?

Diane: I love it when I ask someone, ‘Tell me about your life,’ and suddenly our conversation takes on a life of its own! Our conversations are adventures, and, as the one asking the questions, I have the power to steer the adventure, like a guide through their exploration of their life. My passion for interviewing people is to help them find meaning in their stories. This is how I feel I am making a difference. I believe people are starving to share, on a personal level, what matters about their lives. I love to see their eyes light up, and then our conversation deepens, bringing their past up to the present.

After I have arrived at their home and settled into asking questions, I have often heard them remark, ‘Nobody’s ever asked me these kinds of questions before.’ They usually are surprised at first. But they appreciate my interest in them, and they seem to like that I’m not afraid to ask them personal questions that typically didn’t fit daily chatter.

Val: What kinds of questions do you ask?

Diane: One of my favorite things to ask is, ‘What makes it a good day for you?’ I’ve heard answers such as, ‘What makes a good day for me is just to hear the birds.’ Or, ‘That I have someone to show my pictures to.’ Or, ‘That I have another day to look forward to.’

And so many are grateful to see me, and tell me, ‘Thank you for travelling so far to hear my story.’

Another question I ask is, ‘Do you feel lonely?’ It’s astounding the range of answers I get. I have found that isolation is not always the cause of loneliness. You can have lots of people around and plenty to do but still feel isolated. Or you can live days and weeks completely alone and enjoy your own company alongside the comfort of nature and animals.

One woman in her 90s who lives alone in rural Maine remarked, ‘I enjoy my own company surrounded by beautiful memories.’ She loves her quiet life of solitude.

On the other hand, I spoke with a man in an assisted living community who had plenty to do every day, but still felt lonely. His one, painful reason for being lonely was that he could not interact with his kids as often as he’d like.

I believe loneliness has more to do with a lack of meaningful connection in our lives.

Val: Yes, I so agree that meaningful connections are essential as we age. What do you believe fosters meaningful connections?

Diane: First of all, just look at all the losses in their lives.  Loss of friends, family, work—and all the ways we have maintained structure throughout our lives, especially through rituals and routines—these have disappeared. They have lost their patterns of behavior with their daily routines, no matter how small. Perhaps, they had been meeting at their churches, their local coffee shops with their friends, taking daily walks with their dog in their neighborhood park, going to regular events such as birthdays, anniversaries, holidays. Their rituals have provided meaningful connections for them for decades. But suddenly, those rituals and routines are gone, and they must somehow find a replacement, even in an assisted living community or nursing home. Or in your own home without being able to access what you used to do.

But here’s the most tragic part: It seems no one is interested in your story these days, in our rushed, distracted society. It seems there is never the right time to share your story because there is a lack of rituals and routines that can provide the structure to have long and rich conversations. Seniors often lose these opportunities just to tell their stories, to have the time and undivided attention without being hurried or interrupted. You can have lots of people around and plenty to do but still feel isolated, just because our lives feel meaningless.

Val: Besides asking good questions, what are other ways you spark conversations?

Diane: I think the mere fact that I am interested in someone’s story provides the most potent spark.

For instance, I had a blast with a Passamaquoddy Indian man named Wayne Newell, whom I interviewed in Princeton, Maine, where he lives with his wife Sandy on the Indian Township reservation. (Wayne prefers to call himself Passamaquoddy Indian rather than native American.)  Wayne, age seventy-seven, is blind and dependent on oxygen from a tank. When I visited him, he was recovering from pneumonia, but said he was so looking forward to our conversation he didn’t want to cancel. He was worried about his voice not being a strong as usual, but we ended up talking for about two hours. I was captivated by his stories of growing up on the reservation, the many challenges he has faced, and how he was able to get a Master’s degree from Harvard. 

People are often eager to share not only what they have accomplished, but also what they are still accomplishing. For example, Ernie DeRaps, who’s in his 90s, was once a lighthouse keeper. When he retired at age eighty, he began painting lighthouses. He showed me his collection down in his basement. It was an honor to spend time viewing his paintings. Every single painting of each lighthouse had its own story.

Ernie DeRaps

Val: I notice with your podcast, Conversations about Aging, you typically describe in great detail the landscape of where your interviewee lives. I find that interesting--as if the place where the person lives is part of what defines the individual’s character.

Diane: Yes, I always describe the landscape of where we are in the podcasts. Wayne, for example, spoke about the lake by his home. Listeners of his podcast can learn of his sense of identity through this lake, his connection to this particular place, his sense of history and belonging through the world of this lake. Or through stories of his life on a reservation.

Val: It seems the detailed and colorful descriptions of where your interviewees live help to segue so beautifully into their life stories.

Diane: And here in Maine, in rural settings, it is essential to let your interviewee know that you are noticing these things about their home, about their town, about the woods or the lake or the area. It not only helps them feel comfortable with you, it is a sign of respect and honor.

Val: Do your interviewees like to have their story shared as a podcast and published?

Diane: Not necessarily—some do, and some don’t. Sometimes they don’t respond at all to their podcast once it is up on my website. Some of my interviewees are satisfied just with our conversation itself. One of my interviewees, Leona Chasse, told me, ‘I enjoyed this so much—just the conversation.’

Val: But what a tremendous gift you are giving them, Diane. They are so fortunate to have you there with them.

Diane: This work gives my life meaning. I love synthesizing all the disparate information from my visits to their homes and from their memories. Gathering all the information from our interactions, stories, photos, and natural landscapes—somehow, I try to capture the essence of that person.

Val: And you do that, brilliantly. Thank you for sharing your wisdom with Health Story Collaborative today. We are all storytellers here and you have helped us appreciate even more the power of harnessing our stories.

Diane: I’ve enjoyed it. Thank you.

To learn more about Diane Atwood and her work, please visit www.dianeatwood.com

Val Walker, MS, is a contributing blogger for Psychology Today and the author of The Art of Comforting (Penguin/Random House, 2010) which won the Nautilus Book Award. Formerly a rehabilitation counselor for 20 years, she speaks, teaches, and writes on how to offer comfort in times of loss, illness, and major life transitions. Her new book, 400 Friends and No One to Call: Breaking Through Isolation and Building Community, was released in March, 2020, with Central Recovery Press. Learn more at www.valwalkerauthor.com

By Annie Brewster, MD

With COVID-19 running rampant and social distancing the expectation, these are unsettling and unprecedented times. Quite suddenly, everything is different. My typically frenetic home life is quiet. No more struggles to get kids up and out the door in the mornings. No more school lunches to pack. No more shuttling my kids to their seemingly endless sporting events, shivering in ice hockey rinks or on the sidelines of lacrosse games. I miss the chaos. I realize I find comfort in this chaos. Now it is quiet and this feels weird and uncomfortable.

 Many of us are experiencing a new meaning of the word “togetherness” as we are cooped up with those close to us, on top of each other with limited diversions. Others of us are alone, trying to figure out ways to fill up our days, perhaps yearning for emotional and physical connection. A friend who lives alone just told me that she has not touched another living being in more than 3 weeks. While this is new for her, I now realize that this is likely the norm for many people even when we aren’t living in pandemic times. I have never stopped to think about this before. Professionally speaking, as a doctor on the front lines, I am feeling pretty vulnerable. In general, I have a very high-risk tolerance but now I am scared. At the same time, I am grateful that I have something concrete to do that feels useful. This makes it easier.

For all of us, this is a turning point moment. Our life stories have been disrupted and will be forever changed. Nothing is certain. It is hard to plan, because we don’t really know what we are planning for. Recently, Dr. Anthony Fauci, director of the National Institute of allergy and Infectious Disease, predicted that we might lose up to 200,000 lives to COVID-19 in our country alone. In his words, this pandemic will be “imprinted on the personality of our nation” for years to come. How do we cope with this? Or, even better, how can we make this experience psychologically productive, an opportunity for growth? 

For the past 10 years, in addition to doctoring I have dedicated myself to the craft of storytelling with a specific focus on using narrative as a therapeutic tool for individuals facing illness. At Health Story Collaborative, the nonprofit I run, we define “illness” broadly as any imbalance in the physical, psychological, or spiritual well-being, and “healing" as the process of moving toward balance and wholeness. Our work is grounded in research that supports the health benefits of narrative and we provide tools to help individuals reflect on and craft authentic, health-promoting personal stories. The current state of the world is certainly one of imbalance, and many of us are struggling. Maybe we are physically ill and worry about being more at risk of infection and complications as a result. Maybe we live with individuals who are ill and worry about spreading the infection to them. Maybe we struggle with anxiety and depression already and are having a more difficult time managing during this strange time. Maybe we are lonely, now more than ever, and feel we have no one to lean on. This is a time of collective angst new to everyone. How can storytelling help us to heal?

My belief in storytelling is grounded in personal experience. In 2001, I was diagnosed with Multiple Sclerosis and this experience taught me some important lessons. I learned that our identities inevitably shift when we are faced with traumatic circumstances, and this includes life altering medical diagnoses and global pandemics! I had always thought of myself as invincible. Nothing could stop me as long as I had willpower and perseverance. I struggled with accepting that I have a disease with no cure and lived in denial for years and only very slowly learned how to integrate this “brokenness” into my sense of self. This required me re-write my self-story in a sense. This was hard, but not all bad. I am now living more honestly and authentically.

I have also learned how to live with uncertainty. For me, the scariest part of living with MS has always been the not knowing. So far, I have been incredibly lucky with very minimal and manageable symptoms, but I don’t know what my future holds. I could be fine, or I could be significantly disabled. MS is a disease with huge variability in terms of symptoms and outcomes. At first, I felt completely out of control and terrified by this unpredictability, but then, out of necessity, I learned to focus on what I could control -- my frame of mind. As holocaust survivor Viktor Frankl said, “Everything can be taken from a man but one thing: the last of human freedoms - to choose one's attitude in any given set of circumstances, to choose one's own way.” We can’t always control the events of our lives but we can control our mindset or how we make sense of what happens to us. We are the interpreters of our lives, the meaning makers. We are ultimately in charge of our own stories. It helps me to remember this during these exceptional times, as the crisis of COVID-19 unfolds.

These personal realizations sparked my interest in the power of story. Meeting Jonathan Adler, PhD, now the Chief Academic Officer of Health Story Collaborative, grounded my intuitive understanding in science. I believe this science is directly applicable to what is happening today. I want to share the key concepts with you here, in the hopes that you can apply them to your own lives in real time.

• Dr. Adler’s research is grounded in the concept of narrative identity, or the belief that who we are -- our identity -- is shaped by the stories we tell about ourselves. It turns out that the stories we remember and choose to tell are the stand out moments in our lives—the high points, low points and turning points. These form the scaffolding of our identity and make us who we are. What we are living through now with COVID-19 is certainly a turning point moment, one we will all remember.

•  While identity tends to be fairly stable over time, it is not static. We are constantly constructing and reconstructing the stories of our lives. Identities shift. Living through this time of COVID-19 will shift and change all of our identities both personally and collectively. While this is scary, it is also an opportunity. Change can be positive.

•  How we tell the stories of our lives matters when it comes to mental health. Some stories do a better job at promoting psychological wellbeing than others. This has less to do with the events on which our stories are based -- or what happens to us -- and more to do with the meaning we make out of these events. We play an active role in this meaning making. Ultimately, we decide what to focus on and how to shape our stories. As Dr. Adler says, we are both the main characters and the narrators of our stories. This is an empowering realization.

• Certain narrative themes -- namely agency, communion, redemption, accommodative processing and coherence -- are linked to positive mental health. The more these themes show up in our self-stories, the better our psychological wellbeing.  Agency is feeling like you have control over what is happening to you; communion is feeling close and connected to others; redemption is seeing bad experiences as having good outcomes; accommodative processing involves revising our existing self-stories in response to new experiences in order to make them meaningful; and coherence is about telling our stories in a way that makes sense, to us and to others. At Health Story Collaborative, our work is centered on trying to help people craft, edit and ultimately share their stories, with an eye toward developing these themes.

In general, as human beings we make meaning out of our experiences retrospectively rather than in real time, and most of what we know about the health benefits of storytelling is based on how we tell stories of experiences that have happened to us, rather than stories that are in the midst of happening. With that said, I believe that keeping these principles in mind as our COVID-19 stories evolve can only help us, giving us a greater sense of agency as we navigate these troubling times. Let us all apply these concepts to our lives, both today as we navigate this ongoing disruption as well as in the future, as we sift through our memories and make sense of what has happened. Remember, you are in charge of your story, even if you can’t control what is happening. You are playing an active role in shaping your identity. These are hard times, but embedded in this struggle is opportunity for you to change, to become who you are supposed to be.

 Ask yourself: What can I control in this frightening time? What are my personal strengths and how have these strengths helped me to survive? What can I do to help others in need? Who has been there for me? How has this experience strengthened my relationships? What have I learned and how have I changed for the better? Write this story down and reflect on what has been most challenging. How and why has this required you to change? What does this mean to you? Share your story. Keep writing and revising. This is how you will emerge from this experience whole, with new strength, perspective and self-awareness.  

This text was originally posted on CaringBridge on April 16, 2020.

By Lori Daniels Krummen

I don’t generally consider myself an anxious person – but to my surprise, I found myself unable to sleep especially during those first few weeks.  And then there was that new dry cough – was that COVID, or all that Lysol everywhere? What about that heart pounding for a bit longer than it should after I raced up the stairs, late for yet another COVID planning meeting? Was it too much caffeine today? (I asked for half caff – they wrote “1-2 caff” on my cup. I think they gave me a double shot instead!)  Is that why my heart is pounding and I’m sweating? I had been in the hospital daily, around nurse managers and housestaff who later spiked fevers (but tested negative!)  Like most around me in the hospital, every symptom that would barely register under normal times was now a potential COVID diagnosis.

 I had just finished a half-month block attending on the inpatient cardiology service, which meant I wouldn’t be leading daily rounds again for at least a month (assuming no surge…), and though I was still seeing clinic patients, mostly remotely, and was working daily on our Division and ICU COVID plans and protocols, I found myself wanting to do more.  Twitter feeds about the SARS-CoV2 use of the ACE2 receptor pointed me toward preliminary studies out of China, and more reading, which led me to develop a collaboration between colleagues at our 4 sister University of California Medical Centers. It started with a 9pm Friday night phone call to our Chief Medical and Informatics Officer, which led to a connection with data analysts and a weekend of meetings and spreadsheets.  By Monday at 8am I had IRB approval and a (deidentified) working dataset of all UCSD patients tested for COVID, and their relevant medical data.  Record time.

 For me, that weekend epitomizes the good of what COVID is bringing out in us.  Our community is becoming stronger.  I saw how eager everyone is to pitch in and help, in whatever way they can. The answer, from everyone, was “yes”. Weekend meetings, working early morning and late-night hours, writing proposals, getting approvals, joining forces, going above and beyond – yes, yes, and yes.  We are all pulling together.

 On a personal level, with no sport or science Olympiad teams to coach, no school lunches to pack, no girl scout meetings or drama clubs or practices of any sort to shuttle the kids to – I suddenly have time to not only dive into research, but also to be with my family.  We go on bike rides. We made a family movie about the lockdown.  I cook (sorry, kids! And yes, a non-COVID reason to have GI distress).  And now, though I am back on service in the hospital, the long clinical hours combined with the research keeps me motivated and hopeful.  I still think and worry about those in cities hit much harder than ours, and wish I could do more to help. But the small part that I am doing, and the joint effort that others are freely giving around me, provide me with something to focus on – and now I barely even notice my dry cough anymore.

Lori Daniels Krummen, MD is a cardiologist and Medical Director of the Cardiovascular Critical Care Unit at UC San Diego. She also runs the Biomarker Research Center.

By Chuck Fox, MD

I am on day 14 of self-imposed isolation from the Coronavirus given my underlying moderately severe lung disease.

You may remember from a prior post that I’m a physician, but I have not been to the office since March 12th. It’s the longest I’ve ever not gone to work in my 14+ year career at my practice.

My four (all non-CF, of course) partners have been covering for me in the office and the hospital — they were so gracious about making sure that I protected myself given my pre-existing condition.

I am doing all that I can from my house including taking all phone calls from the hospital doctors consulting our service, joining conference calls about the hospital and practice response to the pandemic, and setting up a telemedicine program for our patients to continue to receive medical care.

Yet, I have tremendous guilt about the fact that my partners are essentially risking their lives to cover for me and ensure that I reduce my risk of contracting COVD-19, and also extreme anxiety regarding the possibility of one of my partners getting sick or even dying from the virus.  As most of us know by now, the virus does not discriminate based on age, and there have been plenty of reports of young (under age 50) people getting pneumonia and dying from the disease.

I have reached out to my partners, had multiple group chats with them, have sent them each a hand-written thank you note, and my wife and I sent each of their families a gift basket on-line with all kinds of snacks and other goodies.

I am maintaining my “productivity,” essentially doing FaceTime Telehealth visits for approximately 6-7 patients per day over the past week from the comfort of my own home. The patients have been so appreciative, patient, and kind. The vast majority of them are doing quite well thus far, maintaining social distancing, and following the guidelines regarding protecting oneself from the microorganism.

Personally, I have a weird feeling of being like an outsider in this whole situation, because I am not going to the hospital or office to meet and examine patients. Rationally, of course I realize that I have no choice, that — if I were to contract COVID, I would almost certainly get pneumonia, possibly wind up on a ventilator and taking up an ICU bed — and even if I were to survive it, would put myself at risk for worsening lung function long-term and increasing the rapidity with which I might someday need a lung transplant.  That, if anything, I have a duty to my family and my community to stay healthy and not make this situation worse.

However, because I am not “out there” in the medical community actively taking care of patients, when I see or hear all these tributes on-line or on the news acknowledging and praising the doctors on the front lines, I do experience a bit of sadness inside.  I am different because of my CF, and this is one of those situations that really shines the light on that.

I have risked my life to care for patients over the years.  As a third year medical student, in 1997, I got HIV+ blood in my eye in the Mass General emergency room.  I have rounded in the hospital and seen in the office innumerable patients with respiratory illnesses such as the common cold, the flu, tuberculosis, etc., to which I could have easily been exposed and contracted.  Yet, in this situation, because of the extreme transmissibility of this disease and its predilection to cause pneumonia, I am relegated to the sidelines.  I would be lying if I said it doesn’t hurt to sit this one out.

But I must power on.  One of my best friends once gave me some amazing advice that I try and remember almost daily: “Don’t focus on what you’re NOT doing, focus on what you ARE doing.”  So I’m going to do that.  I am going to do everything I can virtually for my patients, my partners, and my practice.  I am going to help out my local community, place of worship, and CF Foundation Chapter.  And I’m going to keep in mind that there are many millions of others around the world — sick, food or shelter insecure, and/or unemployed — that are much worse off than my family and I are right now.  I will spend the next few (weeks? months?) appreciative of what I have, keeping a positive attitude, and helping those in need.

Fellow CF’ers and family members and friends — stay safe, make smart choices, and be healthy.

 Chuck Fox, MD is a gastroenterologist in Atlanta, GA

 Republished with permission from “Navigating COVID-19 as a CF’er Who Is Also a Healthcare Provider” by Dr. Chuck Fox, 2020. Cystic-Fibrosis.com, March 30, 2020, https://cystic-fibrosis.com/living/covid-healthcare-provider/. ©2020 by Health Union, LLC.

Read more from Provider Voices: COVID-19 here.

By Annie Brewster, MD

Suddenly everything is different. The quiet is a mix of unsettling and lovely. The chaos and constant motion I have grown used to are gone. No more frenzied efforts to get kids up and out of the house for school in the mornings. No more packing the dreaded school lunches. No more feeling like a taxi driver as I shuttle my kids from sporting event to sporting event, shivering in hockey rinks and on lacrosse sidelines, the sports mom I swore I would never become. And yet I miss all of this. The structure was comforting, or at least predictable. We are all working to create new structure. I hate board games, but we are playing them at night, because my thirteen-year-old forces us to. This is what her friend’s families are doing, apparently. Move it along, please. It was Mrs. Peacock in the Ballroom with the wrench, I guess prematurely. We are striving for normalcy.

Thank god for online school, and for the fact that my kids are old enough to manage their own learning. It helps my anxiety, and theirs, to have “classes” scheduled. There is so much that is unknown. Anything predictable is helpful. I feel grateful that I can put on my scrubs and go to the hospital for my scheduled shifts. It gives me purpose. It makes me feel useful. I am grateful for this. I hear my son telling his ninth-grade classmates during a zoom class that his mom is working in the hospital, seeing patients with COVID. His voice is strong and confident when he says this. He feels proud, and it gives him purpose, too. Yes, I am grateful.

I have never been a germaphobe and I’ll admit, I sort of poo-pooed this whole COVID thing at the beginning. During flu season each year, while many of my colleagues wipe down their entire exam room with Clorax after each visit and wear masks while they see flu + patients, I do not. The mask makes me feel too separate. We will be fine, I kept telling people has COVID started to creep into our realities. Relax. Eat a little dirt once in a while and you will be better for it. My invincibility complex rearing its head. I was so wrong.

Now, I read an “in memoriam” list of healthcare providers who have died from COVID that pops up on my news feed. I am overwhelmed, fixated on their names and ages. Okay, I’m scared. I am a patient and a doctor. I have MS and am on a medication that is messing with my immune system. Does this put me at increased risk? My neurologist says no, as long as my white blood cell count remains normal. Does he really know? I’m not sure. When I stop to reflect, I realize that my long-held shield of invincibility is ridiculous, a defense to protect me from the fact that I am actually already broken, as I guess we all are. How is it that I think I am unstoppable even though I already have a degenerative neurologic condition with no cure? It is almost humorous. Today, my shield has a crack in it. I worry about leaving my children without a mother, fleetingly. Regardless, I want to go to work. I am staffing one of the new RICs, or Respiratory Illness Clinics, at my hospital. We are seeing some very sick patients, because you can’t even get in the door unless you have symptoms suggestive of COVID and are somehow high risk—old, frail, otherwise sick. But weirdly I feel safe. I have on my mask and my goggles, my gown and my gloves. We have protocols. We have awareness and fear, and this fear is helping to keep us safe. But it feels weird to be afraid of my patients. I internally cringe when one of them takes off his mask to blow his nose. Don’t look in their throats, I am told! If you think they might have strep throat, give them an antibiotic. Everything is upside down and backwards.

But I still feel somehow sheltered from the truth of this pandemic. Boston has not yet been hit by the surge. I am not seeing the patients who are intubated in the ED. I am not seeing patients extubated in the ICU, often alone, when continued treatment becomes futile. I am not seeing the bodies. I have not yet been personally touched. No one I love has died. Yet. I am still standing on the sidelines to some extent, even though I am not. This makes me feel a little guilty, like I should be feeling the piercing pain.

I can no longer say I am not a germaphobe. I came as close as I ever have to a panic attack the other day in the supermarket. I was in New. Hampshire, which is behind Boston in terms of COVID awareness. I walk in unprepared. No one seems aware of the rules. No hand sanitizer anywhere. No crowd control or distancing. No wipes to clean the handles of the carts. Even the bathroom is out of order so I can’t wash my hands. I have to touch the food, the credit card reader, my credit card, the cart, the bags, the steering wheel of my car. My hands are contaminated, the enemy, and I wonder if I can trust them. I want to get away from myself, but I can’t.

Annie Brewster,MD is an internal medicine physician in Boston. She is the founder and executive director of Health Story Collaborative.

Read more from Provider Voices: COVID-19 here.

By Craig Norquist, MD

I have to admit, my military background kicked into gear as soon as there was concern that this was a pandemic that we needed “all hands on deck” in order to be successful. As an ED doctor who has active non-Hodgkins Lymphoma, i was torn on wanting to work in the department as a provider and leader, thinking i could provide some sense of calm and leadership in the face of unknown.

My ‘other role’ in healthcare is the CMIO (Chief Medical Information Officer) for our hospital network. We have 5 hospitals, one freestanding ED, and some 50 clinics that i oversee in regards to the EMR and all things digital. I have been working at least 12 hours per day behind the computer, in meetings, and one on ones to optimize the EMR to make it as helpful as possible. Early in the course of this it was helping to create and optimize alerting systems for those patients suspected of having the virus due to travel and symptoms. We also had to create order and resulting systems for testing and tie alerts to the results etc.. My time is hopefully productive in keeping the physicians protected from excessive clicking or documenting as well as optimizing their time on the computer.

I have been scheduled to work a couple of shifts but have been called off due to low work load as our volumes are currently down due to the social (physical) distancing as well as people being afraid of coming to the hospital and getting infected. This makes my wife happy, but honestly it makes me feel as though I am ‘hiding behind the computer.’ I am reassured by my ED colleagues, other doctors in the system, as well as the IT personnel who I work with that my time spent as CMIO is invaluable to more people than if i was working a clinical shift. Someone in IT told me that “there are lots of people who can be ED doctors, but far fewer who can be CMIO.” I have to admit that did help me reconcile my guilt with the long hours i am putting in with informatics.

It bothers me deeply that there are physicians and healthcare workers who are ‘on the front lines’ are sometimes putting themselves in a precarious position due to limited PPE. We are doing everything from trialing a video visit platform to minimize exposure time, to coordinating with our state health information exchange a way to get discrete data feeds of COVID test results as soon as a patient registers for a visit or in the ED.

Each day brings new issues and hurdles, but it is exactly in times like these that we earn our trust and mettle amongst our colleagues. And on another, perhaps realistic but warped way to look at it, i might still be available as a second wave of providers that might be needed to care both the providers who become ill or the second surge of patients.

Either way, I have never been more proud to be a physician and hope that we can continue to keep the wave of support and recognition going in order to regain the love and joy of caring for so many of the doctors who have lost it and become burned out.

Craig Norquist, MD is an Emergency Medicine physician in Scottsdale, Arizona.

Read more from Provider Voices: COVID-19 here.

By James Beckerman, M.D. 

(Twitter format)

1/n Doctors are experts in building walls.

2/n We’re not trained to compartmentalize, but it happens with experience. I don’t know if any of us completely avoid it.

3/n We are active witnesses to death, tragedy, injustice, and inequity every day. This defines the social and biological construct we call disease, and our mission to change it defines us as physicians.

4/n But it hurts. And so we learn to pretend that we are somehow separate from it.

5/n We can even compartmentalize moments of joy, which is tragic. Because there’s always the next patient, the next moment to face without prejudice, with the illusion of a clean slate.

6/n I remember running a code on an older gentleman as a resident. He was intubated, compressed, shocked and lined by our team of twenty-somethings. He didn’t survive.

7/n Afterwards as I walked down the stairs toward noon conference, I realized I was hungry. My co-resident noted that it was pizza day. We high-fived.

8/n I immediately felt sick to my stomach. I was ashamed. Because I knew that I was changing. And because I believed that change was necessary to do this, to see this, to be this.

9/n It’s twenty years later. I’m 48. I’m a happy husband and proud dad. And I love being a doctor. But I always remember that day so many years ago. I want to undo it. I feel guilty about my weakness, my fake bravado that I mistook for strength.

10/n I wonder if I truly needed to build those walls. Sometimes building walls is easier, but that doesn’t make it right.

11/n People are understandably looking for something good to come out of this disaster. It’s hard to sometimes. Many physicians are too drained and wounded to even start that process.

12/n But I’ve had the privilege of having some time to reflect. And some time to really listen, more than I normally do. To my colleagues. And to my patients.

13/n One of the striking features of this pandemic is that we are all experiencing it together. Separately, but together. There’s an irony that the very act of creating distance is making us closer.

14/n I feel closer to my family. I feel closer to my partners. I feel closer to my community. I feel closer to every healthcare worker anywhere. And I feel closer to my patients.

15/n I share your fear. I share your vulnerability. And I also share your gratitude.

16/n A storm is here. And it isn’t going away anytime soon. But it’s washing some things away.

17/n Walls are becoming clearer. People are seeing each other. Sometimes through masks.

18/18 And sometimes through tears. Thanks to all the helpers, everywhere. We see you. All of you.

 Jamie Beckerman, MD is a cardiologist in Portland, Oregon.

Read more from Provider Voices: COVID-19 here.

By John Miller, MD

I feel very fortunate.  I am staying one step ahead of viral transmission. With my career in transition, I have worked in three settings over the past three months.  

I volunteered in Zambia for three months at a rural clinic near South Luangwa National Park.  The infection had started to spread from China by the time I left, but there was hardly an inkling of what was to come at that point.  Two months after my departure, Zambia shut down and many of the expatriate workers returned home.  The clinic where I worked had very limited testing capabilities (Hgb, glucose, urinalysis, malaria, HIV, and a send out test for TB).  They make do working with limited information.  They also trust authority and abide by the government, both of which will help control viral transmission.  For a country dependent on tourism and foreign aid, how long until things get back to normal?

A month ago, I was working in the urgent care in Zuni, New Mexico. It was very busy with a lot of patients with cold and flu symptoms.  The hospital had started separating sick from well and asking patients with symptoms to wear masks.  I remember feeling thankful for that.  I saw a patient with cough and body aches who I would have liked to test for COVID-19.  He had recently traveled to Oklahoma to California and back trading feathers, but did not have an adequate fever for us to get one of the limited tests from the state lab.  The first three positive test results in New Mexico came the day after we left.  Several cases in the area then came out of a church revival in the Pinehill area on the Navajo reservation near Zuni.  

 The risks of infection are much higher on reservations than in other parts of the country.  There is a huge burden of chronic disease as well as chronic underfunding and staffing shortages in the Indian Health Services.  In addition, households are multigenerational and extended families are inter-reliant to meet basic needs. Despite this and having positive tests among Zuni tribal members, religious leaders controversially decided to hold their traditional night dances last weekend before imposing a curfew two weeks after the statewide stay at home order by New Mexico’s governor. Zuni’s first death from COVID-19 was reported today.  How many cases and deaths in Zuni will there be in a week?

 I am now working in the ED on the Blackfeet Indian Reservation in Browning, Montana.  There are no known cases on this reservation, and we have been testing.  There was a nursing home outbreak that led to three deaths in a neighboring county to the east, but now there are no new cases in three days.  To the west, a more populous county continues to have new cases.  I read that the statewide stay at home order is seen by some as an infringement of their constitutional rights.  Should church services and the right to assemble for any reason be considered essential?  “Will our country ever be the same?”

I was a bit slow to accept the need for social and physical distancing.  Our spring break ski road trip with another family was only cut short when all of the resorts closed.  As I write this though, I am on a break in the ED, wearing mask and goggles as I do at all times.  With no COVID-19 cases and the hospital encouraging people to stay away, the ED has been slow.  Most of the ED cases have been patients who need emergent evaluation.  It has been nice.  It leaves time to reflect and try to prepare for what is coming.

I know it is coming, even to one of the most remote counties in the country.  I am told that there is a flow of methamphetamines from Seattle to Spokane to Browning.  It seems like just a matter of time.  I am healthy, adaptable and flexible so know I will get through this.  As an introvert, I am actually enjoying the additional time to myself and with my family.  That part has been really great.

I am challenged, though, to accept those who denied this was coming, and who are still denying it.  Even more disturbing are those who know it is coming but still want to assemble, to grandstand shouting “Give me liberty or give me death!” through some grandiose view of themselves and their struggles.  This is not the revolutionary war.  It’s not except for a small number of anti-government folks who are actually not that far from main stream in the mountain west. 

This comes up from time to time, living on a blue island in a sea of red. That is Missoula in western Montana.  One former physician colleague is still comparing the number of flu deaths last year to the number of COVID-19 deaths.  He is not alone in these parts, and they get to have it both ways.  Oppose the current mitigation as unnecessary and then tout the results of it as evidence that denial was justified all along.  They might say it is just their “personal, educated opinion” but it seems their concern for their beleaguered President’s reelection chances exceed their concern for the health of their neighbors and patients.  

I guess it shouldn’t bother me so much, but I guess I expect more, at least at a time like this.  Can’t we all just put politics aside?  “Will our country ever be the same again?” We can only hope that some things change.

 John Miller, MD is a family medicine doctor in Missoula, MT. 

Read more from Provider Voices: COVID-19 here.

By Carolyn Payne

Solace is found on a peak at sunrise. The silence, the pristine air, and the beams of light reflecting off fresh snow melt away my anxiety. My body moves into rhythmic carving, and I feel my skis float more with each breath. Memories flow through me: my first kiss, my best and longest friendships, and my greatest sense of resilience after recovering from injury.

People often ask how I have time as a doctor-in-training to be outside. For me, the outdoors has always provided refuge and renewal. Today was no different. After a week of devastating news stories and overwhelming changes, skiing gave me a few hours where it was as if the coronavirus didn’t exist.

Skiing in Vermont: as if the coronavirus didn’t exist.

Health is not merely the absence of disease, according to the World Health Organization. I’ve been thinking about this a lot while self-isolating in Vermont. I’m alone in a small space, far away from loved ones. My neighbors blast their TVs and drink alcohol all day. The small town has limited health resources. Yet, the state is rapidly filling with affluent city dwellers retreating to their vacation homes, and I get it.

I’ve lived in dense cities. Dogs poop on sidewalks and sniff trash in the bushes. Roads are filled with angry drivers. Despite all the people, city residents seem to feel just as isolated and disconnected as those who live in rural areas. I am concerned that American cities have limited access to the outdoors, and we are significantly migrating to them.

This matters. We evolved to live outside together, but people across the nation are spending unprecedented amounts of time sitting inside alone. It is no coincidence that we are increasingly unhealthy. Americans are more obese than ever before. Close to half have at least one chronic disease. Suicide, opioid fatalities, and other “deaths of despair” are rising. Despite our country’s wealth and medical advances, American life expectancy is dropping.

A young man sitting inside alone at night.

As the pandemic changes the world as we know it, it is time for Americans to reconnect with the outdoors. Watching loved ones get sick or die and having daily life transformed by emergency orders is traumatic. I, along with many Vermonters, are finding relief in the outdoors. Other Americans should too.

Research shows that the outdoors improves health. Being in green spaces for as little as 10 minutes is associated with better mental health, including higher happiness scores. Spending time in the outdoors is also correlated with lower cortisol, stroke incidence, and mortality.

Even imagining being outside can improve your health now and after the pandemic, but nothing is better than real outdoor activity. Most of us are physically able and legally allowed to be outside. You can go alone or with your quarantine buddy, just stay in local areas and six feet from others. You can literally put your cell phone down right now and go for a walk or even a ski if you’re lucky enough to live somewhere that still has snow. Don’t tell me you don’t have time! If you commit to moving outside, you will feel less overwhelmed, down, or isolated. Your mind will be present, blood pressure will drop, and calories will burn.

Consider the stories of Phillip Stinis and Karla Amador. Phillip lost 80 pounds and healed his chronic back pain by becoming a mountaineer (without the gym). After a devastating emotional time, Karla said, “I went for a hike, and for the first time in a year and a half, I felt hope.” They shared their goal of hiking once a week for a year, which started a movement called 52 Hike Challenge. People everywhere have been putting their cell phones, stresses, and insecurities aside to climb mountains and reconnect with what it means to be human. You can join them.

Being outside will impact your identity and make you part of a community that transcends classes and borders. Amy Roberts, executive director of the Outdoor Industry Association, says, “When I talk with somebody about the outdoors…They all say, ‘I’m a skier; I’m a climber; I’m a runner.’” The outdoors creates purpose and much-needed community, motivating the pursuit of physical, mental, and social health everywhere.

If we connect with the outdoors during this pandemic, great things will happen. We will appreciate the importance of being healthy. We will be reminded that, as just one small part of the universe, we cannot control everything. Most importantly, we will be grateful for life and each other, motivating us to support and love people in our community, country, and world. We can finally act together to move away from our sedentary, materialistic “hustle culture” and even take on bigger challenges like healing our environment and limiting climate change.

As we go through one of the most devastating health crises in history, the outdoors can help. Sit by a flower, take a walk, or go for a ski. It will do wonders. Others will do the same, and America will come out of the next few months healthier and stronger because of it.

Go outside.

Carolyn Payne is an avid skier, hiker, and climber. She recently graduated as a Master of Public Health from Harvard University and an MD from University of Vermont. Carolyn will begin family medicine residency in June.

Originally published in Less Cancer Journal on Medium.com (April 4, 2020).

By Charley Rosenberry

I was in quite an awful wreck in 1986, involving a flatbed semi truck that swerved into oncoming traffic hitting me head on. The first responding police officer called me in as a fatality. When fire and paramedics arrived, a paramedic got as close as he could to me to determine I was alive. However, the first fire rigs on scene didn’t have the equipment to extract me, so called for another station to bring the necessary equipment. While they waited, the paramedic kept encouraging me to “hang in there.” Mind you, I thankfully don’t remember any of the wreck and these details. I only heard them later.

I remember regaining consciousness several days after the wreck. 

Once I stabilized in the hospital, that paramedic came to visit me regularly. Our relationship continued after I was released from the hospital. When I progressed to mobility out of the wheelchair, I went to the fire station and spent an hour or so with the firefighters and paramedics who responded. Quite a memorable visit. I regretted losing contact with the paramedic over the years. 

Now, 34 years later, my wife, Lanora, works for the fire department. Since she was appointed MSO (Medical Services Officer) by Pierce County Fire District 13, she has mentioned a Commissioner in the Department who has been especially supportive of her and served as a valuable mentor. I was glad for that, of course. Then, several months ago, I went with Lanora to her Chief’s retirement party. Her Chief was highly respected throughout Pierce County, so there were lots of Fire Department brass from Pierce County, including Tacoma Fire & Rescue in attendance. When we entered the banquet hall, Lanora pointed out various people she’d mentioned over the years, including the supportive Commissioner who was across the room. I hoped I’d have a chance to meet and thank him that night for supporting Lanora. 

At the celebration, I got into a conversation with the MSO of the Tacoma Fire Department. During it, I told him that I owed my life to his Department. He was interested to hear the details.  I told him about the paramedic mentioned above, how he visited me and had to leave one afternoon after getting called to another emergency that was rather unique on the Narrows Bridge. When I mentioned the other call, the MSO nodded towards the Commissioner that Lanora had pointed out. The MSO said, “That’s him.” 

I went over to the Commissioner. I introduced myself as Lanora’s husband. I said, “And we’ve met before.” In over 30 years as a paramedic with Tacoma Fire, he remembered the wreck vividly. Time, location, circumstances… After we were both a little choked up, he regained his tough guy paramedic composure and said, “Yeah, I remember we told Dispatch, ‘We have an AFU.’ That’s All Fucked Up.” 

Since that reunion, the Commissioner and Lanora have become even closer. He could be her biggest supporter – not that she hasn’t fully earned his support and that of her entire Department. Lanora and I have spent some good times with this Commissioner and his wife at various Department events, and I suspect we’ll have more good times to come.

This story lifts my spirits any time and certainly in these times. It reminds me that it is possible that we can make it through the tough times, and that amazing things can happen on down the trail.  

Segment III – Ditching the Wig: Completing Treatment & Coping with Late Effects

by Rachel Trachten

 1.     Peach Fuzz

My love-hate relationship with the wig is mostly the latter. I hate being bald, I hate having cancer, and I hate needing a wig to look even remotely like my former self. 

But the wig does serve its purpose. It’s top of the line, handmade with natural hair. It makes me look more-or-less like a regular person, albeit a fragile, skinny one. But the wig is heavy and makes my head itch and sweat. I constantly worry that it will get pulled off or slip sideways, revealing my weird alien-like head. In a recurring nightmare, a gust of wind carries all that hair off my head and into the ocean.

When a friend suggests trimming the wig, I take her up on the offer. She cuts off a good four inches, and I feel a rare bit of freedom. I take a certain pleasure in watching all that hair fall to the floor as she snips.

It’s January 1980 and almost time for my very last treatment. The final insult is one more dose of Cytoxan, the nastiest drug of all. It’s so toxic that I’ll spend the whole day at the hospital getting IV fluids to wash the poisons out. At home, one of my parents will awaken me every hour and convince me to drink eight ounces of water to prevent bladder or kidney damage. 

By this time, Zach and I are living in a basement rental on Bank Street in the West Village. He’s taking some time away from Amherst for an internship in City Council President Carol Bellamy’s office. I’m back at NYU while finishing the chemo. We’ve been living together for several months, and he’s encouraging me to come back to our apartment after getting the Cytoxan. “I want to take care of you,” he says. “I’ll wake you every hour all night long.” But I’m not ready for him to see me throwing up. Over his protests, I go home to Brooklyn with my parents.

After that last dose of Cytoxan I’m officially finished with treatment. I experiment with thinking of myself as someone who no longer has cancer, but I’m still bald. I try head scarves and turbans but can’t come up with a better option than the wig.

Gradually, the cold winter days give way to spring. Grass and flowers pop up on the Manhattan streets, and my head sprouts a thin layer of peach fuzz. Zach says it looks adorable.

In our West Village neighborhood, it’s pretty much the norm to look different. Hair might be dyed pink or blue or gelled into spikes. Black leather and tie-dye are both in fashion, and torn fishnet tights are all the rage, especially with Doc Martens.

It’s a May afternoon, and I’m getting ready to leave our apartment for a class at NYU. The weather is unusually warm, and I can already feel sweat gathering where the wig presses against my neck. Just as I’m about to head out, I yank it off my head and toss it onto the sofa. I quickly lock the door behind me, trying not to think about what I’ve just done. With hair that looks more or less like a crew cut, I hit the streets. I’m awkward and self-conscious but love feeling the gentle breeze on my head. I study the faces of people I pass to see if they’re staring.  No one looks twice as I stroll over to the campus.

In my art history class, an acquaintance greets me, and I sit down next to her. “Nice look,” she says. “Who cuts your hair?”

2.     The Party 

To celebrate the end of treatment, my mom wants to throw a party, but my dad resists. He admits that it scares him, that it feels like hubris: don’t flaunt your good fortune or it will be taken away.

But in the end, he changes his mind. As an unstated compromise, we decide to call the celebration a “Good Health” party as opposed to something that would bring the heavens down on me, like “Goodbye Cancer,” or “Hurray, I’m Cured!” One way or another, the party planning begins. My longtime friend Jeffrey, who goes on to become a successful chef, offers to do the catering.

I was 18 when I started treatment; I’m 20 when it ends. Soon I’ll be headed back to Amherst once again. Normal life will resume, won’t it?

The party is in our Brooklyn backyard on a warm summer evening. Several months have passed since my final treatment, and my hair now approximates the Twiggy look. I’ve also managed to gain a few pounds, so I’m no longer a literal 98-pound weakling. I feel festive in a light-blue Marimekko sundress with tiny pink and green swirls.

That night, we celebrate my good fortune, my survival. People from all corners of my life show up with good wishes, gifts, and champagne. I watch Zach as he chats easily with my relatives and childhood friends. No gods strike me down as I mingle with guests and munch hors d’oeuvres. A chance of rain is in the forecast, but not a drop falls.

Still Breathing: Forty years later …

Sometimes people ask about the “gifts” of cancer or what I might have gained from the experience. I bristle at the question, though I can’t deny that illness has made me a more empathic person. And now that I’m well into middle age and my friends have their own medical problems, I’m often able to commiserate in a deep way. Unlike the experience of being surrounded by immortal teens, having peers in their 50s, 60s, and older means that many of us are grappling with health issues. Being healthy is no longer an absolute goal—it’s more a question of figuring out how to cope with whatever disease or disability comes our way. Although I do bring some wisdom to this struggle, the words “cancer” and “gift” don’t belong together in my world. It’s a gift I would have been thrilled to return.

That said, I’ve enjoyed many gifts over the years. Zach and I graduated from Amherst and were married two years later. We both wanted children, but my doctors advised against trying to conceive. Undaunted, we adopted a daughter and then a son. We moved across the country to California in 1998, when Julia and Alex were 10 and 5. I joined a local tennis team and imagined playing year-round for decades to come. Maybe the kids would even take up tennis and we could play family doubles.

Around the time of my final treatment, Doctor Murphy and other experts warned me that some patients start to experience cardiac problems and other “late effects” about 15 years after chemo and radiation. I vaguely took in this doom and gloom, but it all seemed so far away. At the time I thought, “maybe none of that will happen to me.”

But two years after the move, I started to feel the cardiac symptoms doctors had predicted. I found myself quickly out of breath while taking a jog or running for a forehand. My athletic singles game became a gentle doubles game instead.

By the time Alex was a young teen, I’d put my racket away for good. I recall a day we were walking up a steep San Francisco hill together. I had to stop and rest about every five steps. Alex was way ahead but circled back every now and then. “Aah, you’re so slow,” he teased. Then, “Will your heart ever get better?”

It was the first time he’d asked such a direct question about my health. I wavered, but decided he was old enough for the truth.

 “I don’t think so,” I said, “unless someone discovers a great new drug.”

He looked down and jammed his sneaker into the sidewalk. “That sucks.”

“I know hon, it does.”

At the time I was treated, there was no way to know that the doses of radiation and chemo I was given were likely more than was needed to cure my cancer. That particular protocol was used for a relatively short time before doctors discovered that they could treat Hodgkin’s Disease successfully without causing quite so much long-term damage. My future was determined by a particular moment in medical history: Had I been diagnosed a year or two earlier, the treatment wouldn’t have been available and I would likely have died a teenager; if I’d been diagnosed a few years later, I might still be running around a tennis court today.

Somewhere between those extremes, life goes on. Julia lives in New York now, and on a recent visit home, she suggests going to an Oakland A’s game. Zach (who isn’t much of a baseball fan) offers to have dinner waiting when we get home. Julia and I share a love of sports, and the game will be extra special because her beloved Yankees are in town. 

Unfortunately, a heat wave arrives with the Yankees, and we get to the stadium under a blistering afternoon sun. “I’ll drop you off, Mom,” Julia says, just as I’m about to make that request. “Go through the disabled entrance,” she adds, “so you don’t have to stand outside in this heat.” It’s easily 90 degrees and I’m taking baby steps. The air feels thick and heavy. On a good day I can walk for about 30 minutes, but hills, stairs, and heat have all become powerful obstacles.

I follow Julia’s advice about the disabled entrance, something I rarely take advantage of. I can often hide my disability by avoiding situations where it might show, though that’s becoming harder to do.

Julia parks the car and catches up with me inside the stadium. I’m relieved that our seats are in the shade and require minimal stair climbing. It feels great to sit down, and Julia quickly waves at a ballpark vendor selling iced lemonade. I’m breathing easily now, sipping my drink and starting to relax and cool down. I feel a wave of happiness as I take it all in—the noisy crowd, the players jogging onto the field, the sour-sweet lemonade, my daughter beside me.

Rachel Trachten appreciates life in Northern California, where she works as associate editor for Edible East Bay magazine. She is a longtime childhood cancer survivor. This is the final segment of her three-part piece for Health Story Collaborative.

See parts 1 and 2 here.

Segment II – Clowns, Boots, & Radiation: The Surreal World of College Plus Cancer

by Rachel Trachten

1.     Egg Salad

 After the surgery, I begin a course of outpatient chemotherapy. At 18, I’m often the oldest kid in the clinic.

There’s always plenty of waiting there, and at lunchtime staff bring a cart with sandwiches and drinks. Sometimes volunteer clowns with giant shoes and fake red noses walk through the waiting area, trying to cheer patients up with jokes and balloon animals. Some kids smile, but others are just too sick to care.

It’s early fall, and I’m waiting with my father. On this particular day, the clowns couldn’t have coaxed a smile from me. I haven’t seen Zach in weeks, and I torment myself by imagining him at Amherst being pursued by beautiful, athletic young women, all with long flowing hair. In reality, he’s been struggling to keep up in an advanced physics class while also traveling with the varsity squash team. I wait impatiently as his letters travel from the Amherst post office to my Brooklyn mailbox. Our correspondence sustains me as a I slog through more chemo, scans, and blood tests.

My dad is gloomy too. The New York Times is on strike, which is close to a catastrophe for him. He’s flipping through some other newspaper, sighing and grumbling about inferior journalism.

After a few months of chemo, I’m down to about 100 pounds. Most of my hair has fallen out, first in strands and then in clumps. At some point I just pull the remainder out to get it over with. George Michael comes to the rescue once again, referring me to an expert wig maker. When I look in the mirror, it’s hard to believe that I’d so recently been a normal teen, wearing my long hair in a ponytail and trying to lose five pounds so I’d look more like a dancer.

The lunch cart comes our way, and my dad folds his newspaper. “Hey, they have egg salad today!” he says, as if this is a gourmet treat. “And how about one of these milkshakes?” He means the cans of Ensure, a calorie-rich drink to help patients keep up their weight. 

“I’m not hungry,” I say. When the chemo is injected into my veins, it feels ice cold and has a nasty metallic flavor. I try to disguise the taste by sucking on a handful of peppermints.

“I could go down to the deli,” my dad offers. “How about some chicken soup?”

I know he won’t quit, so I take a sandwich. It’s cut into quarters, and I stare at the four little squares laid out on a paper plate. It looks like an immense amount of food.

My dad has practically finished his sandwich when he notices me barely nibbling on mine. “You need calories,” he urges. “You could eat that little piece in just one bite.” And I could have, in a different life. But on this day I get through just an eighth of a sandwich and call it lunch.

 2.     Sherry & Sandy

Waiting for the hospital elevator, I might have been a visitor, decked out in my natural-hair wig and hoisting a backpack. I am in fact on my way for outpatient chemo, having come directly from a college class downtown at NYU. (I’ve enrolled there as a part-time student with assurances from Amherst that they’ll accept the course credits.) I like the fact that I don’t look like a patient—that I’ll escape that role someday and get back to being a normal college student.

Just as the elevator doors open, I see Sherry’s mom, Sandy, heading towards me. I hold the doors for her, and she smiles gratefully. “You look good, hon,” she says. “You have an appointment today?”

“Chemo,” I reply, and she nods.

My family met Sherry’s months earlier on the outpatient pediatric floor. They’d come to New York from a small town in the midwest seeking help for Sherry’s advanced bone cancer. She’s just 14.

“Sherry’s back in inpatient,” Sandy announces, as the doors close.

“Oh.” I know this is bad news. It’s just a question of how bad. 

“Do you want to come and say hello?” Sandy asks. “I’m sure she’d love to see you.”

“Ok, sure,” I say, dreading the visit.

Sherry is curled up in bed clutching one of those hateful mint-green vomit basins. Tiny wisps of hair stick to her nearly bald head.

“Hey honey, Rachel came to say hello. Can you sit up?” her mom coaxes.

Sherry hardly moves, but she briefly opens her eyes and whispers, “hi.” Then she falls back to sleep.

“She can barely stay awake, poor thing,” Sandy says, pulling the blanket up around her daughter. “How’s school going for you?”

“Um, it’s going well, I’m taking modern art history and Irish fiction,” I say. As if my choice of classes mattered. 

“Well, you stay in school, sweetie. That’s so important.”

“I hope Sherry will get back to school too,” I say.

“Yes, she will,” Sandy says, and I nod as if I believe her.

I try to think of another topic of conversation, but nothing seems right. “Well, I should probably get upstairs to my appointment,” I say, backing out of the room. A few weeks later I ask one of the nurses about Sherry and learn that she died a few days after my visit.

3.     A Social Worker and a College Prof

My first big setback comes just a few months after starting the chemo. It’s the fall of 1978 and I’m in the student lounge at NYU. In the bathroom, I notice that my urine is an odd beige color. I know this probably means trouble.

I call Dr. Murphy from a pay phone. It’s a struggle to hear her over the chatter of students hanging out and drinking coffee between classes. But I’m pretty sure she’s telling me to come right to the hospital. She suspects that I have hepatitis and, as usual, she’s right; I’m soon an inpatient again.

The days pass in a blur. Sleep, blood tests, nurses coming and going.

One day a woman comes into my room and introduces herself as Lynn, a hospital social worker. Fine with me, no needles involved. After going through the basics, I find myself pouring my heart out, telling Lynn all about Zach and his recent letter saying that he loves me.

Zach and I have been keeping up a steady stream of cards and letters. I send news of blood and platelet counts along with worries over exams, complaints about the subways, and descriptions of foods I’m eating to keep my weight up. In one letter, I tell him that I’d discovered a new node in my neck and felt paralyzed with panic, assuming it meant the Hodgkin’s was getting worse. I’d gone right to the hospital, where Dr. Murphy assured me the node was harmless. Zach sends newsy notes about life at Amherst, describing his struggles with physics problem sets, his wins and losses on the squash court, and a budding romance between two of our friends.

What I’m not aware of at the time is how much Zach is suffering. His letters are mostly upbeat, but years later he tells me that he was constantly worried about my health. He describes going to frat parties almost every night, trying to numb himself by drinking beer, and dancing until he’s exhausted enough to sleep.

He’s also falling behind in his course work and asks his Russian literature professor for an extension on a paper. Stanley Rabinowitz is a renowned scholar whose lectures are enormously popular with students. He takes the time to ask Zach about his life, and Zach tells him about my illness. The professor gives Zach some advice that sounds obvious but has a profound effect. “Try not to worry about things before they happen” is the essence of his wisdom, and Zach takes it to heart and finds healthier ways to cope.

After a few weeks, I recover and leave the hospital, glad to have met Lynn. As an outpatient again, I pop into her office for a long talk or a quick catch-up every chance I get.

4.     Stick It!

I barely say a word as the curly-haired nurse sticks her needles into my tiny veins over and over, trying to get the required tubes of blood.

I always try to be friendly to the nurses, and most of them are friendly right back. Pediatric nurses are accustomed to screaming babies and thrashing toddlers, but I’m someone who can be reasoned with, even talked to as a peer of sorts.

The curly-haired nurse barely acknowledges me. She offers no sympathetic smile, just gets right down to business with her rubber gloves and syringe. She doesn’t even suggest warming my arm up to make the veins bigger. Then, she becomes increasingly annoyed as my delicate veins roll away from her probing needles. Black-and-blue marks pop up wherever those needles pierce my skin.

My response is to burst into tears as soon as she leaves the room.

“Where’s your fight?” I want to ask my teenage self. “Don’t you hate her?” 

What if I’d pulled my arm away and simply refused? What if I’d marched out of that hospital for good?

5.     New Boots

Dr. Murphy is petite and gray-haired, looking more like a midwestern grandma than one of the country’s leading pediatric oncologists. I eventually learn that she was one of only two women in her med school class back in 1944. At Sloan Kettering she collaborates with another female oncologist, Dr. Charlotte Tan, who looks to me like a Chinese grandma. I’m fascinated by the way Dr. Murphy refers to her colleague simply as “Tan,” as in, “I’ll speak to Tan about that.”

When I become Dr. Murphy’s patient, I’m 18 and she’s about 60. Just as I’m starting treatment, I’m having terrible insomnia. Won’t she please, please give me some sleeping pills? She listens carefully but won’t do it. “If you can’t sleep, just rest,” she tells me. I protest, but she won’t budge. 

As the months pass, we get to know one another. I come to every appointment with a written list of questions, and she always tries to answer each one. She’s a pediatrician but treats me like an adult.

One day in clinic I show her an itchy rash on both of my legs, from my ankles up to my knees.

 The rash is getting worse every day, and I’m starting to panic. She studies my legs, and I ask if I should see a dermatologist.

 “How long have you had this?” she asks.

 “Just a few days, but it’s getting worse.”

She looks over at the leather boots I’ve left in the corner of the room. Stylish brown boots, very chic.

“Did you just buy these?” she asks. She picks one up, touches the stiff leather.

“Yes,” I say, surprised at her interest in my footwear.

 “They must be awfully tight around your legs,” she says, and then I get it.

She picks up her prescription pad, scrawls a few words and hands it to me. “Rx,” it says. “New boots!”

6.     Zapped 

As I’m going through it, the radiation doesn’t seem like a big deal. It happens at the halfway mark of the treatment, with three cycles of chemo behind me and three to go. I show up at the hospital Monday through Friday for three weeks running. The visits are quick: I lie on a table under a futuristic-looking machine and the radiation is beamed through me. My chest and back have been permanently tattooed with tiny blue-grey dots to guide the beam.

Some patients might have questioned the long-term safety of radiation treatment, but I accept it as something I need in order to get well. I’m relieved to find that it’s quick and painless, practically a vacation compared to the nausea and needles that come with chemo. Sometimes I even go out for lunch or to the movies afterwards.

Little did I know that what felt like a respite at the time would have such a powerful effect on my future health. Many years later, a renowned cardiologist at Stanford will tell me, “You got zapped.”

7.    How’s it Going? 

Happy day! Now that I’m halfway through the chemo, Dr. Murphy has given me the okay to return to Amherst. I’ve spent months lobbying for this, reassuring her that I’ll really, truly take good care of myself.

“You college kids never know when you’re tired,” she tells me. But my blood counts improve and she works out the medical logistics with a cancer specialist near Amherst. I’m all set to get back to college life. I’ll take a half-load of classes, live on campus, and continue chemo treatments nearby.

But once I arrive, I feel completely out of place. I’m surrounded by healthy young adults, the sort who wake up early to jog or swim laps before breakfast. It’s February, and most students wear nothing warmer than a down vest, while I’m bundled into sweaters and a bulky jacket. At night I’m exhausted but too anxious to sleep. Zach tries his best to help, but between science labs and travel to squash tournaments, his schedule is packed. Afraid to burden him, I conceal how stressed and alienated I feel.

A few close friends know what I’m going through, but what should I reveal to casual acquaintances? When I opt for the truth, some people are effusively sympathetic and tell me I’m “so brave” or look at me with pity. Others just change the topic. I hate all of these responses and decide to say less. Whenever someone asks, “How’s it going?” (a common refrain on campus), I smile and say, “Good!” (the expected response).

Then, the wig. To take a shower, most students simply walk to the dorm bathroom wearing a robe. I can manage this, but what about the wig? Should I walk down the hall wig-less with a towel around my head? Or should I wear the wig, then hang it on a towel hook? What if someone sees it hanging there? I finally decide to leave the wig in my room. Hoping I won’t run into anyone on the way, I scurry to the bathroom clutching a towel around my bald head. I feel nothing like a normal college student.

 8.     Sisterhood

Women take over the men’s bathroom at the Holly Near concert that February night. It’s 1979, and I’m with Amy, my best friend at Amherst. She and I had hit it off as soon as we’d met, and I love her toughness and honesty. Naturally, Amy joins right in when the women waiting in line decide that the men’s room is up for grabs too.

Amy and I are enthralled by the music and the proximity to so many like-minded women. We both identify as feminists at a college that has only recently gone co-ed. After visiting the Women’s Center during one of my first days at school, I’m surprised by the reactions I get from other female students: “Why would you go there?” and “Don’t you know they’re all man-hating lesbians?”

That night Holly Near and Meg Christian sing about sisterhood and love and political power. I’m eager to escape into the music and forget that I have cancer.

Amy and I can usually talk about anything, but she consistently avoids the topic of my illness. Leaving the concert, she says, “Let’s do a radio show about women’s music.”

A friend at the college radio station can help with the technical side. All we have to do, Amy says, is write a script, choose the music, and tape the show. I have no idea how we’ll manage this, but Amy is confident.

Two weeks later, we’re ready to record. It’s evening, and snow falls steadily as we enter the studio. I do my best to stay alert, but I’m exhausted from the chemo. Amy is focused on the radio show, and I feel hurt and abandoned as she acts like I’m just fine. Months later, she confides, “I felt so close to you that I couldn’t accept how sick you really were.”

 9.     A Small Rash

About two months into the semester, I develop a small rash on my left side. It doesn’t look like much at first, but it persists, reddens, forms small crusts. I show it to my local oncologist, who sighs and says I have shingles, a nerve inflammation that’s common when your immune system is weakened by chemo. He prescribes codeine in case the rash becomes painful.

I fill the prescription but assume I won’t need anything more than Tylenol.

Dr. Murphy suggests I return to New York, but I resist. She reluctantly agrees to let me track how quickly the rash is spreading. Luckily, Zach is not at all squeamish. In fact, the experience of my illness has convinced him to go pre-med, a decision that makes perfect sense given his interest in both science and the humanities. With help from another pre-med friend, he outlines the contours of the rash with a marker to track its progression.

By the next day, I’m popping codeine every four hours. And a day after that, the red spots swell and spread into ugly blisters. The rash has more than doubled in size, and codeine isn’t enough to ease the pain. My mid-section looks like some kind of ghoulish topographical map.

Zach calls Dr. Murphy and describes the blisters and my pain level. “Put her on a plane today,” she says, and my semester is over. I fly back to New York dazed and sleepy from painkillers; my parents practically carry me off the plane. We go directly to the hospital, where I’m quickly admitted. Years later, my mother tells me she nearly blacked out when she saw those blisters.

 10.  Girlfriends

I’m finally well enough to leave the hospital. I’ve been an inpatient for nearly two months, battling shingles, meningitis, and other complications from the chemo. I later learn that my survival was uncertain, but at the time I’m too sick to even wonder about it. 

During these months, my contact with the outside world is limited to staff and visitors. Once I start feeling better, I take slow walks round and round the nurse’s station. Two close friends, Allison and Lisa, are on spring break from college and come to see me. If they’re shocked by how frail and bald I am, they never let on. They bring Italian bakery cookies and gently rub my fuzzy head. Many years later, Allison tells me that when she first learned about my diagnosis, her mother told her not to look it up in the encyclopedia, but she did anyway.

Allison and I became nearly inseparable starting in sixth grade, and Lisa made it a threesome when we got to junior high. With so much shared history, the three of us can relax and giggle even in a cancer hospital. When the nurses let them bring me out to the deck in a wheelchair, I can almost convince myself we’re just out on the town.

The day I’m discharged from the hospital, I walk along the Manhattan sidewalk like a country bumpkin gaping at big city life. My dad drives to Brooklyn and stops at a local market, but I stay in the car, watching the scene around me as if it’s a movie. People come and go with bags of groceries, small children in tow. I’m feeling sleepy and almost drift off for a nap, but the world pulls at me. I find myself thinking about Lisa and Allison and wondering when they’ll come home for the summer. I imagine going out to Sunday brunch and catching up on their lives and dating adventures. Months later, Zach and I rent a basement apartment in Greenwich Village. Before we move in, Lisa and Allison show up with buckets and cleaning supplies and help us scrub every inch of that apartment.

Rachel Trachten appreciates life in Northern California, where she works as associate editor for Edible East Bay magazine. She is a longtime childhood cancer survivor. This is the second segment of her three-part piece for Health Story Collaborative.

See Part 1 here; see part 3 here.

by Rachel Trachten 

Section I- A Fateful Haircut: Diagnosis & Surgery

 1.    Every Last Hair

 Oddly enough, it’s a guru of long hair who leads me to baldness.

 It’s 1978 and I’m 18. My dad’s girlfriend, Susan, is a regular at George Michael’s Madison Avenue salon, where they specialize in long hair. She and George Michael are old friends, and Susan has brought me here as a special treat. We’ve had a delicious afternoon of pampering and long-hair luxury, complete with fragrant orange and pink potions for washing and conditioning.

 Once my hair is clean and silky, I stand in front of the mirror for a trim. Just a trim, because long hair is the goal.

 But as I stand there, dark spots appear in front of my eyes and the world starts to close in. I go down, and next thing I know I’m on a black leather sofa in George Michael’s office.

Before immigrating to the US and becoming a hair tycoon, George Michael had been a medical doctor in Russia. When Susan tells him how I’m still exhausted from the mono I had months earlier, he urges her to push for more testing. Soon after that hair salon episode, I have a biopsy of a swollen gland in my neck, revealing that I have Hodgkin’s Disease, a cancer of the lymphatic system.

As it turns out, even oncologists like to get their hair done. Cancer specialist Dr. Lois Murphy is also a longtime client of George Michael. He makes the call that gets me on to her patient list, and pretty soon the chemo she gives me will knock out every last hair on my head.

2.    Back on the Court 

Just before I have that fateful biopsy, the surgeon tries to calm my fears: “I hear you’re a tennis player,” he says. “Don’t worry, you’ll be back on the court in no time.”

“Could I play by the weekend?” I ask.

“Doubles should be fine,” he says.

Liar.

I need the biopsy because that big swollen gland in my neck just won’t go away. I’ve been exhausted for weeks, maybe months, but I’m 18 and keep pushing through. I’ve never been seriously ill, and how could I be? I’m an athlete with big plans to join my college tennis team. 

When I get the biopsy results, I’m stunned but strangely calm. I take it all in, including my parents’ assertion that this illness is serious, but can be treated. Decades later, I can’t help but wonder how a less compliant teen would have handled it all, someone more like my sister, Jessica. “Cancer!?” she would roar. “No fucking way! I’m a jock. And how could I play doubles after that lying surgeon slashed my neck open?!” She would slam doors and throw dishes, relishing the crash as they hit the kitchen floor.

 3.    The Bracelet

The plastic hospital bracelet feels like a declaration of ownership: you belong to Sloan Kettering Memorial Cancer Center; get used to it. But once the bracelet is secured on my wrist, I’m set free until evening. I head out with my parents (they’re divorced, but friendly) for a few hours in Manhattan before returning to face the prospect of the next day’s surgery. 

At this point, I’ve finished just one semester at Amherst College. I’d missed what should have been my first semester thanks to the mono. But now I’m supposed to be back on track, feeling fine and choosing courses for the coming term. Instead, doctors are going to remove my spleen, an organ I didn’t even know I had. For good measure, they’ll take out my appendix too and probe my insides for more evidence of cancer.

It’s a warm July day, and we end up on the sprawling steps in front of the Metropolitan Museum of Art. The area is packed with tourists and New Yorkers enjoying the sunshine, eating ice cream, watching street performers. As I stand a few feet from my parents, someone taps my shoulder.

“Rachel, great to see you!” It’s Andrea, a casual friend from Amherst, smiling and looking perky in a yellow sundress embroidered with tiny white daisies. “How’s your summer going?” She looks tanned and healthy; she’s practically glowing. 

I pull on my sleeve to be sure the hospital bracelet doesn’t show. Should I state the grim truth? “Things couldn’t be worse. I have cancer.”

I don’t say this. I stare at a thread hanging from one of those cute daisies on her dress and imagine giving it a tug. How far would it unravel?

“The summer’s been good,” I say with a forced smile. “But I’ve got to go; some people are waiting for me.”

 4.    Broken

That evening my parents are with me in the hospital, and at some point I have a few minutes alone with my dad. He looks as broken as I feel.

We sit in my hospital room as the sun goes down. I don’t recall exactly what I say, but I must have used the word “despair.” And he kind-of snaps to attention and shakes his head like he means it. “No,” he says. “Now is not the time to despair; it’s the time to fight.”

I give him a teenage “oh, come on,” look, but he insists. “If there’s ever a time for despair, I’ll be right there with you,” he says, “but this isn’t the time.”

His words glue me back together, at least in that moment. He offers up a reminder that he’ll be there no matter what and that there’s still hope. At 18 I already have a strong belief in working hard for what I want—it’s how I got into Amherst and how I win tennis matches. My misery lifts slightly as I take in his words and start to focus on what’s ahead.

 5.    Good Books

Night falls, and the Manhattan skyline glitters outside my hospital room window. My parents leave, and I stare miserably at the bright lights and skyscrapers. Then I decide to take the plunge and call Zach, the guy I’ve fallen hard for at Amherst.

When I first saw Zach, he was in our dorm library sprawled on his back on an old sofa. He looked irresistible in a white tracksuit with thin black stripes down the sides. He was reading from The Complete Works of William Shakespeare, a weighty hardcover edition that he held overhead like a paperback. I asked around and learned he was a varsity squash player, a sport I vaguely associated with high-end prep schools. It certainly wasn’t on anyone’s radar at my public high school in Brooklyn.

I also heard that Zach had a bit of a reputation as a playboy, but I wasn’t scared off. A few weeks after we met, he asked me to dance at a Valentine’s eve party and the chemistry between us was undeniable. When we sat in the same lecture hall or I spotted that white tracksuit across the campus quad, I felt his presence like an electric charge. One night we took a midnight walk around campus and kissed by moonlight. I soon learned that Zach had grown up in Northern California, where his dad was a physicist and his mom worked in public television. His West Coast childhood was as exotic to me as my New York roots were to him. 

When the semester ended, Zach and I parted for summer with the quasi-commitment “try not to fall in love with anyone else.” I headed home to Brooklyn, and he left for California, then back to his mom’s current home near Boston.

Now it’s July, and Zach has no clue that I’ve just been diagnosed with cancer and will have surgery first thing in the morning. We’d been writing occasional letters that summer, and I’d mentioned that I was having a biopsy. But neither of us took it too seriously, assuming it was just something I was doing to appease my parents. 

I set off in search of a pay phone, clumsily pushing my IV pole down a hallway decorated with cheerful museum posters. I’m on a pediatric floor and most of the children I see are bald. I try not to think about what that means. Some of these kids also have amputated limbs and are getting around using crutches or wheelchairs. As I slowly make my way toward the phones, doctors and nurses in bright scrubs bustle past, miniature teddy bears clipped to their stethoscopes.

I’m trembling as I dial Zach’s number and try to explain the train wreck my life has become. “Hodgkin’s Disease,” I say. “It’s a cancer of the lymph nodes, but they say it’s curable. The surgery is tomorrow.” Silence hangs between us.

“So, um, what else have you been doing?” he finally says. “Have you read any good books this summer?”

Good books?! We end the call soon after that, and I sob against the cold hospital wall. Why would he want a girlfriend with cancer?

 6.    Love Medicine

I’m stuck in the hospital for two weeks after the surgery, and Nancy is my main nurse on the day shift. She’s good at her job, but mostly it’s her love life that helps me through those depressing days. 

Post-surgery, my abdomen is covered by a large bandage with stitches underneath. I have a tube in my nose, an IV needle in my arm, and pain meds every few hours. The saga of Nancy and her boyfriend offers something to focus on other than my own misery. 

Nancy lives in New York, but she’s in love with a guy in Boston. They’ve been in a long-distance relationship for almost two years, and, at 30, she’s more than ready to get married. But Boston won’t commit. He’s content with the status quo, where they see each other every few weekends. Nancy is starting to doubt his love. Meanwhile, there’s a New York guy who adores her, but she’s only lukewarm on him.

It’s my daily bit of fun to hear Nancy’s latest drama. And she’s eager to hear my boyfriend blues too instead of just taking my temperature and blood pressure. When Zach announces that he’s coming to visit, Nancy and I have a long conversation about which nightgown I should wear. In the moment, it’s an important choice, and she turns out to be good medicine.

 7.    Nurse or Supermodel?

My mother stays with me in the hospital after the surgery. There’s a cot for her next to my bed, though I can’t imagine she got much sleep.

 I’m aware that my mom has terrible fears about hospitals. But I’m a typical self-centered teen and don’t give it much thought.

I do know that my mom had tried to visit a friend in the hospital but had to leave almost immediately because she felt faint. Perhaps she never even made it to her friend’s room. And now Sloan Kettering is her second home.

 Somehow, she copes.

One post-surgery night, I awaken with sharp abdominal pain. Please, let it be time for more painkillers. No, it’s too soon. My mother goes in search of the night nurse, who turns out to be a glamorous blond. I can’t help but admire her chic angled haircut and the tiny diamond studs in her ears. But something about her cool elegance makes me think she’ll tell me to tough it out until I’m due for pain meds.

My mother explains what’s been happening, and the nurse listens closely. In a soft voice, she asks me to show her exactly where I’m hurting. Then she gently rearranges my body to help ease the pain. She gets extra pillows, putting them in just the right places under my legs. The nurse promises more meds soon, but I’m already feeling better. People can surprise you.

 8.    My Own Prince Charming

After telling Zach about my diagnosis in what feels like a disastrous phone call, I try to resign myself to the end of our relationship.

In an attempt to protect him, well-meaning friends and relatives also suggest that he let our romance end. Recovering from Hodgkin’s Disease is far from a given in 1978. In fact, the protocol I’m getting is barely beyond the experimental stage and is being tested only at Sloan Kettering and Stanford Medical Center. Dr. Murphy tells my parents that this combination of drugs and radiation is beginning to show good results, with cure rates as high as 75 percent. I’m unaware of these statistics, but I do know that my disease has progressed to stage IV, having spread to several parts of my body.

Zach ignores the advice to stay away. Instead, he calls my father and arranges a visit. About a week after my surgery, Zach gets on the Eastern Airlines Shuttle and into a cab and appears at the hospital. I’m so excited and anxious about his visit that I exhaust myself before he gets there. I’m sound asleep, probably snoring, when he arrives.

I open my eyes and he’s standing there in khaki pants and a striped button-down shirt, his hair nearly blonde from the summer sun. I forget about my pain and tubes and stitches. Whatever Sleeping Beauty felt when she awoke to find Prince Charming beside her, I’m sure it was nothing compared to my joy in that moment.

For a while, we make small talk about Zach’s flight from Boston. Then we cover his recent visit to California, where his father lives. The issue of my illness feels too dangerous to touch. Finally, we tiptoe up to it. “I won’t be back at school in the fall, with all this going on,” I say tearfully, motioning toward my body, the IV pole, the room. “I know,” he says. He sits by my bed and holds my hand, and, after a little while, I doze off.

 Rachel Trachten appreciates life in Northern California, where she works as associate editor for Edible East Bay magazine. She is a longtime childhood cancer survivor. This is the first segment of her three-part piece for Health Story Collaborative.

See Part 2 here: see part 3 here.

This is a story about the value of writing and how it sustained me throughout my treatment for an aggressive cancer.

In 2016, my annual physical exam detected low white blood cell counts. My doctor referred me to a hematologist who recommended a bone marrow biopsy.  The biopsy discovered acute myeloid leukemia and triggered immediate hospitalization. In forty-eight hours, I went from feeling fine to intensive treatment for a lethal disease.

The same day I began chemotherapy my wife was admitted to my hospital with a fractured femur. After preparing for and recovering from surgery, she transferred to a transitional care unit for a month-long rehabilitation.  Meanwhile, I had a five-week hospital stay to treat infections arising from chemotherapy-induced immunosuppression.

I proceeded through induction chemotherapy, consolidation chemotherapy, and a successful cord blood transplant. I’m now over three years out from my initial diagnosis and final treatment, and I remain cancer-free.

While doctors treated my body, several strategies sustained my identity. Although I was retiring from my role as a professional sociologist, my identity as a writer making sense of my social and personal worlds was crucial throughout my odyssey. My identity-sustaining strategies included mindfulness practices, physical activity, a pro-active attitude to my illness, unrelenting humor, and a secular worldview. But my most valuable strategy was writing my story.

It started simply enough during my first week of hospitalization when I realized we needed a way to keep folks informed about our situation. People suggested a Caring Bridge site with updates for all to see.  However, announcing to the world that our home would be unoccupied for a month or more seemed unwise.

Instead, I sent an email to neighbors asking them to collect our mail and keep an eye on our house. I quickly realized that emails were an efficient way to keep everyone informed. I eventually sent over sixty reports to more than fifty recipients. These missives combined medical updates and progress reports with reflections on being a cancer patient and the often mysterious and frightening world of cancer care.

These reports were composed for a known audience. I was highly conscious that I was writing for others and included some humor to lighten the impact of my otherwise dire news. One of the great benefits of writing for others was the supportive feedback I received from my correspondents.

It eventually dawned on me that these cumulative reports had become a kind of cancer memoir. On a more profound level, it also occurred to me that I was writing for and to myself.

Each day in the hospital brought a new, dizzying array of personnel, medications, tests, scans, side-effects, cautions, and complications. While I received excellent care, it was an overwhelming initiation into the world of cancer treatment that left me feeling highly vulnerable and utterly dependent on the care of strangers.

The best way I could make sense of it was to write about it. Writing became my therapy. It allowed me to take the chaotic threads of my daily experience and weave them into a coherent narrative of what was happening to me.

My writing translated swirling emotions and unpredictable circumstances into a narrative that tamed my fears and preserved my identity.  At a time when there wasn’t much I could control, telling my story made me the author of my own life. In short, writing became a psychic survival mechanism.

Late in the process, I decided to share my story more broadly.  With the addition of a preface on lessons learned and an epilogue on identity changes, my memoir appeared from Written Dreams Publishing in December 2018.

As I was preparing my book for publication, I read the Canadian sociologist Arthur Frank’s book on The Wounded Storyteller. His work retrospectively overlaid a whole new level of insight into my narrative and how patients can retain their personhood in the face of life-threatening illness and technically driven treatment.

Frank claims that storytelling by ill persons can play a crucial role in shifting them from a passive to an active role in their illness. While doctors may ensure our survival, telling our story can maintain our identity. Put differently, while people surrender their bodies to medicine, they retain their self by telling their story. Storytelling thereby rescues patients from the medical colonization that would otherwise reduce them to passive patients in an asymmetrical power relationship.

Frank describes three types of stories that emerge out of illness. The first, restitution narratives, say “I was healthy, then I was sick, now I am (becoming) healthy again.” Here, the patient’s body is analogous to a broken-down car, the physician is an able mechanic, and the patient is a passive bystander drinking bad coffee in the shop’s waiting room.

Patients eventually get better in a restitution story, but it remains one in which an active physician restores the sick body of a passive self. Restitution stories are the medically and culturally approved way we think about illness: when something is broken, we get it fixed and move on. They nonetheless leave something important out of the picture as the person is reduced to a body needing repairs and the self is sidelined by the doctor’s expertise.

The coherence of restitution stories is lacking in the second type of narrative: chaos stories. Without narrative order, coherent sequence, or discernible causality, they carry no expectation of recovery or illusion of control. These stories are threatening to the patient, but also to physicians because they are an implicit critique of their limited ability to fix things.

By their nature, chaos stories cannot be told as much as simply experienced by ill persons as overwhelming. They can overtake any sense of a coherent self and an orderly world for a patient. Despite the patient’s sense of helplessness and the physician’s dislike for such stories, they must be acknowledged before the patient can reclaim their personhood.

The final type, quest stories, are the only ones in which the teller assumes center stage. Here, the patient accepts their illness and uses it to try to gain insight from their experience. Such stories involve a recursive journey; the patient takes a trip in order to discover what kind of trip it is, and then finds meaning that can be passed on to others.

There is heroism in quest stories; it isn’t the physician vanquishing disease but rather the patient persevering through suffering. As people become wounded storytellers, they derive meaning from telling their illness. Through quest stories, people become not just survivors but witnesses with a responsibility to share their stories.

As I digested Frank’s ideas, I realized I had become a wounded storyteller and that all three types of storytelling had appeared in my own accounts.

My odyssey began as a chaos story. Upon my hospital admission, I had no clear understanding or sense of control over what was happening to me or my spouse. But wait, there’s more: three weeks into our mutual incapacitation, a nasty storm brought down two sixty-foot trees onto the roof, deck, and gutters of our unoccupied home. It just seemed like anything could (and did) happen. My fractured impressions nicely fit Frank’s description of chaos stories as proceeding through multiple, destabilizing events linked only by the phrase “and then” repeated over and over.

Shortly thereafter, my reports changed as I learned more about my disease, my short-term treatment, and the long-term options for further treatment. In effect, my doctors were telling me a restitution story about how I had been healthy, then became sick, and now will get better. While my doctors and treatment provided the data points for this story, I played an active role by narrating it. But in order to convey my experience to others, I had to comprehend it myself. My readers became the prod for my own self-understanding, as writing-for-others seamlessly became therapy-for-me and a means of maintaining a coherent self

The next turn in my narrative occurred after my day 180 consultation. I was six months out from my transplant and had tapered off my anti-rejection medication and its unwelcome side-effects. That turning point sparked a qualitative shift in my mindset. For the first time, I was able to accept that I had weathered my treatments, that they had been successful, and that I was actually better. I then described my mood as serene euphoria, but it came with a powerful urge to reach out and share my story.

I now see this period as the beginning of a quest story. As I have reached out through my memoir, support groups, peer counseling, speaking engagements, writing workshops, fund-raising events, and survivorship conferences, I have met the responsibility to share my story and forge new connections with other members of the cancer community.

My most meaningful, current activity is being a peer volunteer meeting with current transplant patients. Our common bond of transplant fosters profoundly personal conversations between complete strangers as we share our stories. In so doing, we broaden the circle of people who become authors of their own lives and join the community of wounded storytellers.

Steve Buechler is a retired sociologist. His memoir is titled How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes). More information on his book and activities is at www.stevebuechlerauthor.com. You can also find a brief interview with Steve at https://www.youtube.com/watch?v=IUfYUImyhJU.