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.

Artist Statement

When I was thirteen years old, my doctor put me in a neck brace and said it would not last long. Eleven years later, I am still navigating extreme oscillations of health while feeling stigmatized and misunderstood. I was diagnosed with Ankylosing Spondylitis (AS) on 11/11/11. Although Ankylosing Spondylitis is a common disease, it remains unseen and unknown by both the public and medical practitioners. My art is how I make my story visible.

My paintings employ layers of text and image to capture the multifaceted identities we have as patients. Patients living with chronic, incurable diseases rarely fit into healthy-sick binaries. With illnesses often invisible and oscillating in symptoms and magnitude, patients find themselves in limbo, betwixt and between sick and healthy. By creating a third box, an “other,” I aim to make this complex identity visible.

In my photography, I show the intersection between the finite and the infinite nature of chronic disease. These body scans are dissected into disconnected body parts: my brain, my spine, my heart, my vertebra. As a patient, I have often felt that my body parts are seen as fragments to be analyzed in separate glass boxes. However, in sum, my boxes represent the connections between my body and mind.

Biography 

Sal Marx is a multimedia artist who works to illuminate human experiences with chronic disease and advocate for patient-centered change. Living with Ankylosing Spondylitis, an invisible, underrepresented disease, she uses her personal story as a visual data point in the context of a much broader healthcare crisis. Marx studied Public Policy, Psychology, and Media Studies at Pomona College. She is based in Brooklyn, NY.

On December 5th, at a live storytelling event hosted by Health Story Collaborative and WBUR CitySpace, we heard stories from three courageous women parenting in the face of life-threatening illness. You can watch the video of the event here. 

Lila, 45, is a psychotherapist by training and the mother of two daughters, ages 8 and 11. She has stage 4 lung cancer and each day she is practicing the difference between “choosing to live rather than trying not to die.”

Caroline, 35, is a writer and the mother of two sons, ages 4 and 7. She is living with glioblastoma—the most aggressive form of brain cancer—and was given a life expectancy of one year when she was diagnosed in 2017. She used to only write cookbooks but just published a children’s book with her sons in mind. Her message: “Whether or not Mommy’s body survives, my love is permanent and will shape them forever.”

Betsy, 42, a chemistry professor, lost her husband Chris to glioblastoma - the same cancer that Caroline has - in January 2019. She has not only been grieving his loss, but forging ahead as a now single parent 

What questions have they been grappling with? How do they care for themselves and their children? What lessons have they learned?  Their wisdom transcends illness and parenting and is relevant to all of us as human beings.  

An Interview with Paul Kandarian, Actor, Writer, Activist:

By Val Walker

Introduction

This year the Health Story Collaborative, in partnership with COAAST (Creating Outreach About Addiction Support Together), launched performances of an autobiographical play written by Paul Kandarian and his son, Paul, called Resurfacing. Their story takes a close look at how addiction tears apart family relationships as well as how our wider community can play a vital role in bringing a family back together in the fragile, early stages of recovery.

Last April, I sat in the audience of this play alongside an audience of over 100 people who broke into a standing ovation as we wiped away our tears of relief and hope. I felt the power of a live theatrical performance telling a true story with a very hard-won and inspiring ending.  

Resurfacing tells the story of Paul as a father who was once painfully disconnected and powerless over his son’s opioid addiction. And worse, he believed he was responsible for his son’s pain. “I felt like a shitty parent that my kid had turned out this way.” The shame Paul suffered, alongside his son’s shame of being addicted, became a vicious isolating force that polarized one from another. But despite the limitations of his family to heal from this isolating force, and the alienation of returning from Afghanistan as a veteran, his son turns to supportive people in his community to help him build his recovery support network. The healing force of the wider community is also what Paul needs as a father to break through his isolation and shame. 

In short, Resurfacing shows us how our community can hold families together through isolating times when they have no one to count on. We need our communities to grapple with addiction and the long, lonely path of recovery.

About Paul

Paul E. Kandarian is an actor and a writer living in the Boston-Providence area. He has written countless articles for a variety of publications, including the Boston Globe, Yankee magazine, Rhode Island Monthly, Boston Parent, Seattle’s Child and many others. Since 2007 he has dedicated his creative talents towards acting by appearing in independent films, TV commercials, educational videos and more.

But with all the acting he does, the most important work he does is performing with the nonprofit, COAAST, Creating Outreach about Addiction Support Together. A Rhode Island-based nonprofit devoted to eradicating the opioid epidemic through arts-based therapeutic and community-driven approaches, COAAST was founded by Ana Bess Moyer Bell. Working closely with Ana Bess, Paul performs in the COAAST production of Four Legs to Stand On in addition to Resurfacing in his mission as an activist in helping communities heal from addiction.

Theater as a Gathering Force to Build Community

Paul Kandarian with Ryan Durkay in Resurfacing (Photo: Boston College The Heights)

Paul was the perfect person to explore the role theater plays in strengthening our communities to grapple with addiction. I couldn’t wait to ask Paul about his experiences performing for diverse audiences since Resurfacing was launched earlier this year.

Val: Paul, how does repeatedly performing in a play about your own painful ordeal make you feel? It must be exhausting, to say the least, if not difficult.

Paul. Sure--It does feel nerve-wracking at times, and it does hit close to home. Yes, it’s raw, and you “put yourself out there,” and you do “go there” time and time again. But seriously, it’s necessary. That’s why I do this. This story needs to be told and it comes straight from the heart, which I think is the best way to get it out there. My words and my son’s words speak for thousands of fathers and sons going through addiction and recovery. I am honored to be performing, and I will say again why I am performing as an activist: “We hurt as a community, so we must heal as a community.”

Val: How does theater make us all feel part of our community?

Paul: Theater works on many levels to make us feel a part of our community. First of all, theater validates that we already are a community. When we all get together in a big room to watch a true story being told, we are assured that community is truly around us—we just don’t see it until we are all in that room together. Theater shows us what has been there behind the scenes, that our community is in action, long before it has turned into a news event or a script or a play. Just think about it: When you go to a play about something you care about, you are surrounded by a bunch of people you don’t know (strangers) and yet we’ve all come together to be moved by the same things (addiction, loneliness, isolation, families in chaos) and we all have a common experience at the same time—now, that’s community.

We forget we are part of a community because most of the time we are running around in our individualized little bubbles. It’s like the saying, “A fish doesn’t know it’s wet.” We hardly remember we are all in this big shitstorm together as human communities.

Val. I never thought of community in that way--that we just forget that we already are a community until we are all in that room together having the same experience. Grappling with addiction, recovery and isolation does require this powerful sense of community that supports us. And furthermore, how does theater create community?

Paul: Theater has an immersive force. It pulls us in. That immersion is healing because we are somehow given the permission to tap what is uncomfortable inside us. Theater allows us to “go there” to what’s eating at us, what’s downright painful. When we identify with a character, we sort of hitch a ride with that person to go through their journey and come out with something they have learned. Essentially theater works on the assumption that if you can feel it, you can heal it. Best of all, theater can take us to the stigmatized, or shameful parts of ourselves. The parts we hide from others as well as ourselves. We might even feel acceptance and compassion for those hidden parts.

 Paul E. Kandarian, (far left) son Paul S. Kandarian, (second from left) Anna Bess Moyer Bell (holding mic), Founder, and other COAAST performers. (Photo courtesy of COAAST)

Val. Yes, the stigmatized and shameful place that the opioid epidemic touches in all of us…

Paul. To make a point about stigma, I often try a live experiment with our audiences who come to see Resurfacing. Here is what I do: I ask the people in the audience to raise their hands if they know someone who has cancer, and most people will raise their hands. But when I ask people to raise their hands if they know someone with an addiction, far fewer hands will go up. The audience “gets it” when we do this experiment. We hide so much. Still, theater has a way of reaching the parts we hide, and this helps remove the stigma.

And I have one more thing to say about why theater is so healing. It is revelatory. It shows us we are more similar than we are different. It reveals we are mostly alike deep inside. I find that very hopeful.  Theater helps us feel that this world does not have to be so impersonal and dehumanizing. We are, indeed, much more alike than our world seems to tell us. Social media, for example, can tell us how special or different or unique or better or worse we are from one another. I believe theater does the opposite. We show up and we feel the same feeling at the same time in the same place. Theater gathers us together and breaks us out of isolation and loneliness.

Paul Kandarian’s son, Paul S. Kandarian

Val. Paul, of all the shows you have performed with Resurfacing, which one has been the most memorable for you?

Paul: Earlier this fall, we performed at the Providence VA Medical Center. It was a packed house, a great turnout. It felt so good to perform for so many veterans. My son, a veteran of the war in Afghanistan, was in that audience. Sitting in that audience was also the clinician that he first reached out to and trusted, Lynne Deion.  Lynne never gave up on him and has been there throughout his recovery. It was brilliant to have them all there. It was cathartic, to say the least. I am so proud of my son. He has now completed his degree in psychology and is working as a rehabilitation counselor with others in recovery.

I’m looking forward to more performances of Resurfacing in 2020. In partnership with the Health Story Collaborative, COAAST will be expanding Resurfacing to more venues, especially for veterans in Rhode Island and Massachusetts. Stay tuned.

What a long, long journey it has been for all of us. It’s hard work, but being an activist as an actor is the most rewarding thing I’ve ever done in my life. I never thought helping others could feel this good.

Val. Thanks for all you do, Paul. Congratulations for launching Resurfacing this year. It’s been wonderful to talk with you.

Paul. I’ve enjoyed it. Thanks very much.

TO READ MORE ABOUT RESURFACING AND COAAST PRODUCTIONS, EVENTS, AND PROJECTS:

COAAST (Creating Outreach About Addiction Support Together) www.COAAST.org

Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress (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 next book, 400 Friends and No One to Call: Breaking Through Isolation and Building Community will be released in March, 2020, with Central Recovery Press. Learn more at www.valwalkerauthor.com

Check out our 2019 Fall Newsletter to read about our current initiatives here, and see blow for a preview:

A Conversation with Allie Cashel

By Val Walker

Allie Cashel is the author of Suffering the Silence: Chronic Lyme disease in an Age of Denial (North Atlantic Books) and is the co-founder and president of The Suffering the Silence Community, a nonprofit organization dedicated to breaking the stigma surrounding chronic illness and disability. Since starting work with STS, Allie has been invited to facilitate workshops and to speak about disability, inclusion, and storytelling at events around the country. She has appeared in a number of global media outlets, including Good Day NY (Fox5) and NowThis Live News, and has presented her work at a United States Congressional Forum.

Introduction

Communicating with doctors about a chronic illness takes practice, patience, and honesty. But in a rushed, crowded and hectic medical setting, we often skip information about our symptoms or get distracted and confused. Are we being fair reporters for ourselves about our symptoms and our own nuanced observations? It’s a fine, delicate art to accurately and fairly describe what is going on with our bodies, especially when we don’t understand it. And worse, if we have multiple chronic illnesses or a rare illness, we could feel overwhelmed trying to grasp what is happening to us. We can barely wrap our minds around the troubling problems our illness is causing in our daily lives, let alone do a good job of describing what the heck is going on to our doctor!

Many women like me manage several chronic illnesses at once, which overlap and complicate our symptoms and patterns. For example, I suffer from multiple autoimmune diseases, as well as other endocrine and cardiovascular diseases. Trying to analyze my symptoms can be as delicate as reading tea leaves, yet I must be as fair and concise as possible when I approach a doctor. My radar is on high alert for any sign that the doctor’s eyes are glazing over when I try to briefly outline the many overlapping symptoms—I even apologize for “having so many problems.” Indeed, my anxiety spikes long before I step into the doctor’s exam room. I can feel my blood pressure go up just thinking about how to describe my unrelenting symptoms to my doc (“Here we go again…”)

Allie Cashel has struggled with Lyme disease since her teens, and spent years feeling dismissed and misunderstood by doctors. She conducted a series of interviews with Chronic Lyme patients in New York and around the world, revealing a complex world of suffering within the Lyme community.

But in the past few years, she sees heartening signs that medical providers are tuning in more to the disease. With her helpful and informative website for living with chronic diseases alongside Lyme disease, she offers tips as well as reassurance for those of us who frequently see doctors while battling chronic illnesses that play havoc with our bodies.

1.     Do you think medical providers are “getting it” more about Lyme disease these days?

Allie: Fortunately, I’ve seen a difference in the past five years. There is more awareness and a more comprehensive view of Lyme disease. There is a broader understanding about the scope and intensity of the disease and how it affects our lives. I’ve witnessed how my fellow Lyme disease survivors are not undergoing as much dismissiveness and misunderstanding from doctors about what we suffer. I wrote about this sense of silencing in my first book about Lyme disease, Suffering the Silence. Thankfully, I see changes for the better.

 2.     What would you suggest for approaching a doctor about suffering a chronic illness, especially if it is a rare illness, or you’re dealing with subtle early symptoms?

Allie: I have lots of experience going to doctors with strange, subtle symptoms with Lyme disease. And I have heard from hundreds of patients coping with chronic illnesses with nagging, constant problems. Here is a list of what I think is crucial for sharing information with our providers:

• Write down your questions in advance—think ahead about what you want to find out and prioritize your questions.

• Track the symptoms and patterns of your illness, and if needed, keep a record of vital signs (could include blood pressure and pulse tracking, sleep and diet patterns, urinary and bowel patterns, pain patterns, stiffness and fatigue patterns). This might involve keeping a medical journal of the patterns of your symptoms.

• Research (Google) the treatments for the illness and learn about the illness.

• Know the landscape of what you need that is “out there” for treatment.

• Help to inform your doctor about the treatments you are interested in.

• Bring another person with you if you feel you might be overwhelmed or awkward with the communication.

3.     What if the treatment is not working or you are not sure what to say to your doctor for follow up?

Allie: First and foremost: It is important to be patient and wait at least a few weeks (even months) for treatments to take effect. Continue to track your symptoms. It might be useful to talk with your doctor about symptom relief, at least to help temporarily until more is known.

4.     Can you tell me a story about how your organization, the Suffering the Silence community, has helped someone communicate better with her doctor?

 Allie: Our Suffering the Silence community holds retreats for people to gather face-to-face to talk openly about their chronic illnesses. One of the benefits of our gatherings is that we can problem-solve about communicating with our medical providers and learn how to advocate for ourselves.  

One of our retreat participants was a woman suffering from endometriosis who felt her doctors had not responded well to her and did not listen well enough. By talking in greater depth and in detail about her problems at our retreat, she became more vocal and articulate about her condition. And best of all, she was able to learn what she needed to look for in a new doctor. Fortunately, some of the retreat participants were able to describe their positive interactions with their own doctors and offered concrete examples of what a healthy relationship with a doctor looks like.

 And here is the key: We need to ask ourselves, “What does a healthy relationship with a doctor look like?”

Our retreat participant with endometriosis was able to identify what she needed to look for when choosing her new doctor. Here is a check list of the basic questions she learned from our retreat:

•  Does the gender of the doctor matter to you? (Our retreat-goer identified that she preferred a female gynecologist.)

• Does your doctor allow you to feel comfortable enough to ask “stupid questions?” We need an open-minded doctor—for an open exchange of information. We often suppress our questions because we feel embarrassed that we don’t know enough. It’s vital that we don’t feel judged.

• Does your doctor take the time you need to fairly describe your situation—more than 15 minutes if you need more?

• Do you think it would be helpful to bring someone with you to help advocate, ask delicate questions, and retain the information? (For more complicated or difficult visits with our doctors, such as when getting test results or pathology reports, it’s normal that we need support when trying to absorb powerful, life-changing information.)

5. Your first book, Suffering the Silence: Chronic Lyme Disease in an Age of Denial has helped thousands of Lyme survivors find their voice and learn to self-advocate about their disease. I’m excited to hear that you are a co-author with Dr. Bernard Raxlen, a Lyme disease expert, for a new book coming out this July, Lyme Disease: Medical Myopia and the Hidden Global Pandemic. Can you tell us more about this project?

Allie: This is one of the first projects of its kind, bringing physicians and experts together from around the world to address the epidemic of Lyme on a global scale. This book acknowledges just how many people and how much need there is to address this issue around the world.

 Book description: “Based on years of diagnosing and treating this growing problem in NY City, Dr. Raxlen, together with ‘expert patient’ Allie Cashel and a team of international contributors, provides a road map for individuals who suspect they have been infected and are lost in the ‘medical maze’ of Lyme and other tick-borne diseases, searching for a diagnosis and appropriate treatment.”

Read more on Allie Cashel’s website:  www.sufferingthesilence.org

Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress (Penguin/Random House, 2010). 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 next book, 400 Friends and No One to Call: Breaking Through Isolation and Building Community will be released in March, 2020, with Central Recovery Press. Learn more at www.HearteningResources.com

Have you ever tried writing poetry when struggling as a patient or the caregiver of a loved one? Writing a poem can feel like a meditative practice. You slow down, consider your thoughts, and ponder topics for your poem. Your mind can wander over territories well-known and those unknown. You explore questions like: Why am I in this place? How will I move from denial to acceptance? Or, will I ever reclaim my life? Along the way you may uncover thoughts previously unknown. Poetry opens a door to vast possibilities for self-expression.

After my daughter Elizabeth died from a rare bone cancer at the age of fourteen, poetry sprang forth from me. Unplanned, unrehearsed, unnerving at times. As I read my journal entries written during Elizabeth’s yearlong illness, I knew that somehow, I had to process my pain, my anger, my devastation.

With pen in hand, I delved deep into foreign lands. Overtime, I discovered that drawing metaphors with the natural world allowed me to open up but not feel too vulnerable, to take risks, and to unfurl tightly held emotions.

I’d like to share a poem that I wrote. I hope that after reading my poem, you might consider picking up your pen and writing one, too.

Waves of Life

Snow follows a day of sun;

Cold follows a day of warmth;

Pain follows a day of joy.

I have learned that I will never know

what the next day will hold,

but I am no longer afraid of this uncertainty.

Changes are the waves of life—

we will not know their strength,

or how hard the waves will hit the beach,

but they will flow in each day and night,

ever changing, ever free.

If we can learn one vital truth,

we will be set free:

Life constantly changes but we are never alone,

the earth is under us,

the waves break before us,

the moon shines upon us,

family and friends comfort us,

and the one who has left us,

encircles us with love.

© Facing Into the Wind by Faith Fuller Wilcox