Health Story Collaborative · Tara on Recovery

How can we “pay forward” what we learn from personal health struggles?

Tara has lived with anorexia for most of her life. Now a medical student, she aspires to become an empathetic physician who draws upon what she has endured to provide compassionate care. Listen to her story here. 

Interview by Annie Robinson

Audio editing by Annie Robinson and Winslow Ferris

Robert Burns

 Carolyne slumped back in her wheelchair.

“I’m shitty,” she said.

Carolyne is 85 years old, and has lived in a memory care facility for almost a year. Over half of her time in the fifteen-person unit has been spent in quarantine; family visits have been stopped by state order five months ago.

I’m a geriatrician, and the only outside person to have visited her during the isolation. Her days are limited to contacts with the nurses and aides, supplemented by face time contacts with her daughter.

The note from the nurse that morning told me Carolyne had lost weight; she was down nearly thirty pounds over four months.

I asked her about her appetite and food preferences. Like many older adults in assisted living, she dismissed it with a wave of her hand. The kitchen had been making her personal meals, trying to prepare her foods that she will eat. It was not been successful. I told her that she had lost weight.

“I’ll fit in the casket better,” she said. She smiled.

I explored her comments, probing for depression, thoughts of self-harm. She has dementia and several other chronic illnesses. I concluded she is exhausted from her isolation.

In Tennessee, where I live, and all across the country, older adults are locked in nursing homes and assisted living facilities. The precautions are prudent. To date there have been over 170,000 COVID-19 deaths in the United States. According to the CDC, 8 in 10 of US deaths have been in people 65 years and older.  I’ve worked in nursing homes during the pandemic. In a couple of them the virus spread like fire in a dry forest, killing dozens, and infecting staff and other residents. Walking through a nursing home with a COVID outbreak was a surreal experience; masks and gowns and distancing from the staff and patients made physical contact, human touch, with those who needed it most impossible. Being in an infected nursing home during the initial dark days of the pandemic, while we were all gathering our footing, was an apocalyptic hell I would not wish on anyone.

Several months ago, I had a visit with Marjorie, a 75-year-old woman in one of those infected facilities. She had dementia and strokes, and had become infected with the virus. She had stopped eating. She was more confused, and interacted less. It was clear she needed to be on hospice care. I called her sister to discuss her situation. Because of the lockdown they had not seen each other for almost two months. For ten minutes I held my phone so the two of them could Face Time, the first time the two of them had seen each other since the quarantine. Marjorie talked to her sister over the small screen. They both said “I love you.” Marjorie was more interactive with her sister than she had been with me, and I told her sister.

“Family is medicine,” her sister said as she wiped tears off her cheek.

Carolyne needs her family. I agree isolation was the right decision when the pandemic was exploding in spring and early summer. I’ve worn masks since April and have been tested for COVID nine times to make sure I don’t infect my patient. But in my experience, all isolated older adults, especially in facilities, need family contact.

Reuniting with family members in assisted living and nursing homes is at the intersection of facts, science, and policy. I write this in a state that has not mandated masks and struggles with getting the virus under control. But I believe there is a way to move forward, at least for now. I am confident that if family members were isolated before visits, wore masks and socially distanced during their visit, families could have brief encounters together. The risk of spread with a brief hug or touch is minimal, with the above precautions.

There is no medicine which will make Carolyne eat or improve her mood. She needs to see her daughter.

Note: Patient names have been changed.

A Conversation with Julie Norstrand, PhD, MSW, MSc

 INTRODUCTION

Back in January--in what seems like years before the pandemic invaded our lives--Julie Norstrand, an executive board member at the Newton Council on Aging, invited me to join a panel to discuss social isolation among older adults. Already, loneliness and isolation had been declared an epidemic according to AARP (Connect2Affect studies). Most Americans were beginning to be aware of the isolating forces in the lives of many seniors, especially those who lived alone (one in three people over age 65 live alone according to the US Census Bureau). This panel was to provide a public forum for the citizens of Newton to tackle loneliness and brainstorm on ways to increase the quality of the social lives of older adults.

I was keen to join Julie’s mission and sit on the panel at the Newton Free Library, scheduled for June 8th.  It was heartening to get to know her as we discussed our talking points --but suddenly, in the middle of March, the lockdown began, and all of our planning froze. We decided to pause for a few weeks. But Julie persisted in staying in touch to pull together the other panelists and organizers. We all marveled at the irony of our predicament: Now we ourselves are isolated and painfully aware of how our older loved ones were even more isolated. What could we do to break through the isolating forces of the pandemic, particularly in Newton? Julie’s determination led us through our planning and goalsetting, and her passion for the project was inspirational.

The panel was held on June 8th, and over sixty citizens of all ages attended.

As an eldercare consultant and a gerontology scholar, Julie has been aware for decades that older adults as they age “become increasingly invisible and isolated.” With the advent of the pandemic, she felt a call to action to organize a response in the Newton community. Indeed, before the panel at the library, Julie had been spearheading a group of Newton Council on Aging members to raise awareness of social isolation among older adults in the general community. Before the pandemic hit, Julie and her team had been standing at the library with brochures and ready to answer questions about this important topic. Unfortunately, due to the pandemic, this community activism had to stop. In an ongoing effort to tackle loneliness, along with her colleagues at Regis College, Julie recently started to develop a survey of older adults in Newton to assess how well organizations and individuals were reaching out to those most isolated.

She also runs her own consultancy, Help My Aging Parents, LLC, guiding her clients in how to juggle the havoc of the pandemic with all the other tasks of caregiving. Ultimately, the goal is to help families plan ahead for caregiving! Finally, Julie is also an adjunct professor in the social work program at Regis college where she teaches social work as well as gerontology courses. Teaching gerontology speaks to another of Julie’s missions which is to help students realize the enormous value that the aging population brings to our society; ultimately, to have more students enter the gerontological workforce.

I was shocked that Julie had the time to do an interview with me for HSC. I was eager to know what she thought about the effects of COVID-19 on the lives of older adults six months since the start of the pandemic (as of August 2020). Most of all, what could she tell us about how communities could take action in meeting the dire needs of seniors moving forward?

My Conversation with Julie

Val: What alarmed you about COVID and how it was affecting older adults?

Julie: It was quite apparent that there was tremendous anxiety and need for social contact among seniors. When the Newton Senior Center offered phone contact to them, we heard, “Yes please, I want a call back!” They were hungry for human contact. The need for contact becomes more poignant as you become older and more vulnerable.

I was also hearing from my clients, typically in their fifties or sixties, who had aging parents. I run a support group for adult caregivers through Zoom and was listening to their stories of how COVID had touched their lives. It was so painful for them because they felt so powerless about their parents. One daughter was so worried about her mother in an assisted living community because she could not see her in person (due to COVID visitor restrictions). She said her mother told her, “I don’t see the point of living.”

Some of my clients were in a terrible bind. For example, one daughter wanted to bring her mother home to live with her, but her husband was a physician—there was too much risk of her mother being exposed to COVID. This is the reality of so many families who want their parents to be home with them but worry about their safety.

I wondered what more could be done to promote quality of life during COVID at nursing homes and assisted living communities. There needs to be more interventions to create remote groups for social media and online communication. But this would entail more training and access to technical skills for older adults.

Val: Having worked recently in activities programs with seniors at assisted living communities, I know that during COVID there has frequently been a shortage of staff and unfortunately not enough time to teach seniors how to use social media or Zoom. So very tragic for those who are left out of the technical solutions.

Julie: One thing is certain as we move forward since the pandemic: Older adults will need better access to social media—particularly those who live in assisted living communities and nursing homes. There needs to be more effort put into training them for online communication. It should be easier to get access by creating remote groups. Our Aging in Place models are now looking at different social engagement interventions for a post COVID world.

On the bright side, baby boomers (adults in their sixties and seventies) tend to be more savvy about using social media and online social networks. Let’s hope that in the next few years, as boomers move into these communities, they will be more comfortable and resilient in building community online. But still, for people now in their eighties and nineties, this technical transition has been terribly difficult for them without the support they have needed during COVID.

Val: Even as a boomer myself, I don’t take to Zooming too well. I get fed up and exhausted with it. I am starving for more “warm fuzzies” from in-person human connection. I can only imagine how it feels to be eighty-five and hungry for human touch. 

Julie: But as I see it, sadly, this pandemic will last a long time, and there are likely to be more pandemics in the future. This pandemic has forced us to change the way we view social engagement—and older adults who live in nursing homes or assisted living communities will need a much better range of social activities online balanced alongside their in-person activities offline—in short, a good balance.

Val: Long before COVID, you were doing research on the benefits of social support for older adults. For over a decade, you have studied how important it is to prevent loneliness and isolation as we age. For example, socially isolated adults are more likely to develop Alzheimer’s, as well as develop heart disease. What got you started in this research?

Julie: About twenty years ago, I was a research assistant with the Philadelphia Corporation for Aging. Back in the early 2000s, we were involved with a team from New York City working on disaster preparedness planning. We knew of the dire consequences of heatwaves, such as in Chicago and Paris, where older adults were the most vulnerable. Specifically, single or widowed white men were more likely to die of heat exhaustion. Quite frankly, they did not know how to ask for help and get support—and it seemed to them that asking for help was a sign of weakness (but okay for their wives to ask for help.) They had previously relied on their wives or sisters to do all the reaching out as they had the social skills for this task. The men perished trying to tough it out all alone, trying to fend for themselves against the heatwave.

So, it all came down to this, as I saw it: Our rugged individualism and social stigma about asking for help was not a healthy approach to aging because we become more vulnerable as we age. We need to learn how to tap our communities, ask for help, talk openly about our needs, build social networks. This was my realization that building social capital was essential as we aged, and our communities could play a greater role in this (especially at removing the stigma against asking for help).

Val: You are now working on a survey for older adults coping with COVID-19 and aim to use the survey results to initiate a community response. Based on what you learned from the study during the Chicago heatwave—that some seniors are reluctant to reach out for help, or don’t know how—then, how are you planning to offer support in the midst of this pandemic?   

Julie: I am now in talks with my colleagues at Regis College in developing a survey for older adults in Newton. We will be mailing out surveys to adults aged 75 and older in October.  Our surveys will entail 20 to 30 questions. We will be asking how they are coping during COVID-19. It is a nuanced assessment that looks at: how adults are coping, the services and outreach that they have been receiving, the extent to which needs are met, and who they have been reaching out to receive and provide help, and how they are spending their time on a daily basis. Furthermore, a subset of these respondents will also receive friendly phone calls from a Regis college student over a four to five month period. It is hoped these friendly calls will provide some emotional support and friendship during these difficult months ahead.

Val: That sounds really helpful. It makes so much sense that you are giving seniors a chance to spell out exactly who is helping them and how they are helping. Specifics are vital here. And even the reluctant folks (proud, “rugged individualists”) have the opportunity to identify what they need without coming off as too “needy.” I also love the idea of the Regis students, mostly young Gen Zs, chatting with the eighty-year-olds.

Julie: Yes, and some of those students are feeling scared, left out, and lonely themselves. The older adults can share their life’s experiences to comfort and encourage the students—and that makes them feel relevant.

Val: Right, feeling relevant. Researchers studying loneliness have often reported on the importance of having meaningful conversations to alleviate loneliness. But--now that you say the word “relevant”--I can see how older adults yearn to be relevant to others, and this is what gives them meaning.

Julie:  Yes, that’s right. The most resilient older adults I studied were the ones who still felt relevant to others. Not only do older adults want to be needed, they want to feel relevant to others.

When studying social capital with older adults as part of my dissertation, what mattered was the quality of the relationships they had, not just the number of contacts. The key to their emotional and physical health was the quality of their connections. So, in considering how to increase social engagement for older adults, we need to ask the question: How can we help to make them feel more relevant?

Val: I imagine you ask your clients that very same question:  How can they make their parents feel more relevant? Can you tell me more about your consultancy, Help My Aging Parents?

Julie: Yes, I do ask that question a lot. But, more fundamentally, I help my clients plan ahead and think out loud. To have serious conversations about the future of their loved one.

I provide eldercare consultation to individuals and families who are increasingly concerned about the well-being of an aging relative, but do not know how to “step in.” After a thorough consultation, an effective action plan is developed, tailored to the aging relative’s needs and wishes.

It all comes down to thinking ahead. Being proactive, not reactive.

It’s better to plan ahead and consider options when you are not in the middle of a medical crisis. There is no reason to be caught with financial hurt and emotional hurt in a messy situation that could have been avoided with good planning. Ultimately, you know your parent will need assistance at some point, and the whole experience is just so much more positive if you are ready.

And best of all, sometimes, having an honest conversation about caregiving can actually bring the parent emotionally closer with their adult children. I encourage my clients to speak from their hearts about what is on their minds.

Val: Hopefully, that honesty can open doors—if it’s expressed with genuine love. It’s really sad that in our society we tend to put off having those deeper heart-to-hearts, especially about what we need and desire as we become more vulnerable in our aging process. Julie, the work you do is so vital. You empower family members to “go there” to the hard topics and scenarios that we often dread talking about. And your research and insights are valuable. I am so pleased we could talk today. Thank you very much.

And, oh yes, please keep me posted on how the survey is going.

Julie: I certainly will. This was a lovely chat, and I appreciate your time. Thank you.

MORE ABOUT JULIE NORSTRAND

Julie’s Consultancy, Help My Aging Parents: www.helpmyagingparents.net

Julie has worked in the field of aging for the last fifteen years by serving in the clinical, academic, and research domains of gerontology. Her academic qualifications include a PhD in Social Work, Master’s in Social Work, and a Master’s in Clinical Psychology. She is extensively experienced in assessing individual older adults and the environments in which they live, having worked in hospital and community settings as well as serving on various boards focused on aging-related issues. Her research has specialized in examining the role of community life of older adults and age-friendly communities.

Julie is a native of Denmark, and lives in Newton with her husband and son. She currently serves as an adjunct faculty member at Regis College and runs her consultancy, Help My Aging Parents, LLC, providing guidance to families about their caregiving needs for their aging relatives.

Julie’s philosophy: “Since coming to America in 1995 I have gained the appreciation of the value of older adults in our communities. Sadly, too often older adults, as they age, become increasingly invisible and isolated. This is tragic. We as children of our aging parents have a moral responsibility to ensure that we maximize the quality of their lives by giving them a meaningful and safe environment to grow old in.”

Peer-Reviewed Publications

·      Ring, L., Glicksman, A., Kleban, M. & Norstrand, J. (2017) The future of age friendly: Building a more inclusive model using principles of ecology and social capital. J of Housing for the Elderly, 31(2), 117-129

·      Xu, Q., Norstrand, J.A. & Du, Y. (2016). Effects of living alone on social capital and health among older adults in China. Int J Aging Hum Dev. Advance online publication. doi: 10.1177/0091415015624419.

·      Norstrand, J.A. & Glicksman, A. (2015). Influence of living arrangements of community dwelling older adults on the association between social capital and health. In F. Nyqvist & A.K. Forsman (Eds.) Social capital and health among older people: the meaning of community and context (pp. 89-109) NY: Springer.

·      Norstrand, J.A. & Chan, K. (2014). The relationship between health and community across aging cohorts. J Aging Research, Article ID 626097, 10 pages.

·      Norstrand, J.A., Glickman, A., Lubben, J., Kleban, M. (2012). The role of the social environment on physical and mental health of older adults. J Housing for Elderly, 26(1-3), 290-307.

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 Steve Buechler

I would never recommend cancer as a way of learning life lessons. But having “been there,” I have tried to “do that.” Cancer treatment required coping strategies. Surviving it taught important lessons. Both remain surprisingly relevant in an ongoing pandemic.

 My Cancer Odyssey

 In June of 2016, I was anticipating one more year of teaching sociology before a carefree retirement. Life was good in every way. But a routine physical revealed dangerously low white blood cell counts. My doctor referred me to a hematologist who recommended a bone marrow biopsy that detected acute myeloid leukemia. Within 48 hours, I was hospitalized and began a week-long, 24/7 chemotherapy cocktail.

My hospitalization continued for the next 35 days. After chemotherapy, I became severely immunosuppressed and battled a number of predictable side-effects. By my fourth week, things improved, and a repeat biopsy revealed no evidence of leukemia. That meant I would live long enough to explore options for further treatment.

 My cancer had an “intermediate risk” of relapse so I faced a difficult decision between more chemotherapy or a stem cell transplant.  After researching my options and getting second opinions, I chose transplant. My logic was that if I had more chemotherapy and it didn’t work out, I would regret not pursing the transplant. If I had the transplant and it didn’t work out, at least I would feel as if I gave it my best shot.

In October of 2016, I received a double cord blood stem cell transplant. It was preceded by high dose chemotherapy and full body radiation to gradually destroy my compromised immune system. It was followed by two and a half weeks of recuperation before hospital discharge.

Engraftment happened surprisingly quickly. I had playfully named my baby donors “Ralph” and “Gwen.” Three weeks after transplant, yet another biopsy revealed that Ralph was 99% engrafted. We’ve been getting along ever since.

After a month of extreme fatigue, bone aches, and lingering nausea, several milestones followed. One month out, my daily clinic visits became less frequent. Three months out, I began tapering my anti-rejection medications. Six months out, I stopped those and a dozen other medications.

Nine months out, I gave the keynote address at my transplant unit’s fundraiser before 400 people. One year out, Ralph and I got our childhood vaccinations from dead viral sources to replace the originals that had been rendered inactive by the transplant. Two years out, we got additional immunizations from live viruses.

In retrospect, I hit the treatment trifecta. I got into remission on the first try.  Ralph fully engrafted in three weeks. And I’ve had no graft-vs.-host-disease. In the sweet words of my transplant oncologist, “this is as good as it gets.”

My Coping Strategies 

When I was told to expect an initial 5-week hospital stay, I was dumbfounded. I realized I needed ways to cope with how my world had suddenly become very small and quite precarious. Over the ensuing weeks, I cultivated several strategies.

I practiced mindfulness, meditation, and yoga. It helped me banish thoughts about the past and anxieties about the future, and to non-judgmentally accept and live in each moment as it unfolded.

I did as much physical exercise as my circumstances allowed, including stretching, isometric exercises, hall walking. I did it mindfully, and these routines increased my energy and lifted my spirits.

I was a pro-active patient. I made my bed, organized my hospital room, and structured my days with new routines of meditation, exercise, writing and yoga. I actively collaborated with my medical team in managing my care. Being in charge of these activities gave me agency and purpose when these were hard to come by.

I maintained my sense of humor. Sharing jokes and witty banter with my medical providers broke the ice and humanized our consults. It also gave friends and family a way to relate to me as the person I’d always been rather than the patient I’d recently become.

 I relied on a supportive belief system. For some, that’s religion. For me, it was a secular worldview based on my social science background. It encouraged me to learn about my illness and treatment, and it fostered a practical, problem-solving approach to the challenges they posed.

 Finally, I wrote my story. I sent detailed reports about my status and reflections to a large group of email correspondents. Writing for others forced me to understand my odyssey so I could articulate it for them. This writing became a psychic survival mechanism (and a memoir).

I’ll never know if these strategies contributed to my physical survival, but I always know they preserved my sanity and sustained my identity during one of the most harrowing periods of my life.

 I also benefitted from some privileged circumstances. After a year of paid sick leave, I retired with a steady income and a home that’s paid for. Within that context of material security, my coping strategies have sustained my physical, psychological and emotional health.

Coping Strategies Redux 

These strategies have also proven quite relevant during the coronavirus pandemic.

Mindfulness continues to keep me grounded in the present moment and allows me to banish anxieties if I cannot take specific actions to address the causes of my concerns. It also reminds me not to look too far ahead and rather take each day as it comes.

My repertoire of physical activity now includes a cautious return to my health club for lap swimming and strength training. The physical and psychological benefits during this pandemic are inestimable.

My proactive stance toward organizing my small hospital world now plays out in a slightly larger arena at home. But there remain limits and prohibitions on things I would like to do. I draw on my acquired skills to focus on what I can control. That helps me live within these limitations, find new projects, and structure my days with activities still available to me.

My sense of humor remains intact. It reminds me not to sweat the small stuff, and that it’s almost all small stuff. And for the few things that really are big stuff, black humor works well.

The secular, problem-solving worldview that guided me through cancer treatment is especially apt for following and implementing the latest medical advice and cautions about living as safely as possible in the midst of an ever-evolving pandemic.

Finally, writing my story (including this blog post) still helps me make sense of my circumstances and find ways of acting intelligently and responding effectively to whatever life brings my way.

Further Lessons for a COVID-19 World

 There are additional lessons from my cancer odyssey that are helpful in this pandemic.

Cancer taught me that asymptomatic people who feel healthy can in fact be quite ill. That describes me upon my diagnosis, and quite a few people who are unwittingly infecting others with coronavirus now.

Cancer vanquished my sense of invulnerability. Having been in good health for my first 64 years, I still harbored a teenager’s sense of invincibility. But we can all get sick with little notice, for no particular rhyme or reason.

 Cancer taught me to be at peace with isolation. I learned to spend time alone and be resolute, whether in a hospital room or a pandemic lockdown.

Cancer taught me to await test results calmly. “Scanxiety” doesn’t change the result but can be debilitating to our energy and outlook.

 Cancer taught me to value masks.  Whether protecting me during chemotherapy-induced immunosuppression or protecting others from a contagious virus, masks are essential to caring for ourselves and others.

 Cancer taught me the value of patience during a prolonged and uncertain recovery. It was a marathon, not a sprint. Moreover, the marathon involved an obstacle course of impediments. Facing such challenges, patience is indeed a virtue.

Cancer taught me resilience. One of my favorite images is a three-legged cat who doesn’t mope and withdraw, but just continues silly cat antics despite the handicap. Facing impediments, I’ve learned to just get on with things.

Cancer fostered a deep respect for the skill, wisdom, and dedication of doctors and nurses. It taught me to be the best patient I could be for them, and now to follow their evolving pandemic guidelines for everyone’s sake.

Cancer underscored the role of chance in life.  Things sometimes happen for no apparent reason, but we still must make the best decisions we can with the incomplete, imperfect and ever-changing information we have.

 Cancer made me humble about what I can control. It’s a lot less than I would like to think but recognizing that saves a lot of energy and keeps me on an even keel.

 Cancer left me a deep well of gratitude for the life I still have and taught me to live as judiciously and mindfully as I can … and to enjoy the ride.

As I said at the beginning, cancer is a terrible way to learn life lessons. But perhaps the most important lesson of all is to make the most of the hand you’re dealt.

Steve Buechler is a retired sociologist. His memoir is titled How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes). The book is “Suggested Reading” in the “Inspiration” category on the Leukemia and Lymphoma Society’s website. More information on Steve’s book, blog posts, speaking engagements, and webcasts are at www.stevebuechlerauthor.com.

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

By Alison Rosalie Brookes, MD

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

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

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

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

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

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

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

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

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

 By: Keisha Greaves

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Watch Keisha tell her story live here

Photo credit: Sarepta Team, with permission from Keisha Greaves

On June 22, 2020 Health Story Collaborative hosted its first virtual Healing Stories Session in partnership with Inspire and the Society for Participatory Medicine.  The event featured two extraordinary storytellers living with chronic disease and progressive disability who shared their experiences of navigating unexpected and unpredictable challenges.

By Faith Wilcox

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

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

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

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

Life, once again, has taught me new lessons:

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

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

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

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

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

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

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

About Faith:

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

By Amber Soucy

Pressure. I can feel it.

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

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

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

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

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

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

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

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

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

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

By Audrey Stern

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

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

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

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

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

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

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

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

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

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

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

 Watch video here

Credits: current-day photographs by photographer Jennifer Jordan

 By Diane Kaufman

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Val Walker

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

Introduction

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

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

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

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

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

A Q&A with Diane Atwood

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

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

Diane with interviewee, Wayne Newell

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

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

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

Val: What kinds of questions do you ask?

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

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

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

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

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

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

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

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

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

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

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

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

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

Ernie DeRaps

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

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

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

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

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

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

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

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

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

Diane: I’ve enjoyed it. Thank you.

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

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

By Annie Brewster, MD

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

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

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

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

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

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

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

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

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

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

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

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

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

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

By Lori Daniels Krummen

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

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

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

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

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

By Chuck Fox, MD

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

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

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

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

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

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

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

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

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

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

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

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

 Chuck Fox, MD is a gastroenterologist in Atlanta, GA

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

Read more from Provider Voices: COVID-19 here.

By Annie Brewster, MD

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

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

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

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

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

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

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

Read more from Provider Voices: COVID-19 here.

By Craig Norquist, MD

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

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

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

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

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

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

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

Read more from Provider Voices: COVID-19 here.

By James Beckerman, M.D. 

(Twitter format)

1/n Doctors are experts in building walls.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Read more from Provider Voices: COVID-19 here.

By John Miller, MD

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

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

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

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

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

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

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

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

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

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

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

Read more from Provider Voices: COVID-19 here.

By Carolyn Payne

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

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

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

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

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

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

A young man sitting inside alone at night.

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

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

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

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

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

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

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

Go outside.

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

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