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.