By Shaler Wright

Every year I make the same wish on my birthday. No matter how many candles there are to blow out, I close my eyes, take a breath and wish — to sleep. Deeply, peacefully, without pain, and without medication. Hamlet’s words ring out like a hopeful refrain in my mind. “To sleep, perchance to dream” is my mantra to self-charge when endurance runs low.

 Doctors don’t know what to make of me. Such a bright, well spoken, friendly woman. But those widespread symptoms? That intermittent pain, migrating aches? And those inconclusive test results!  “She’s so high functioning in daily life, what could possibly be wrong?”

My complaints can’t be neatly gathered under a classic diagnosis, so it’s been repeatedly suggested that my discomforts are a fluke, not really so bad, the result of stress, or dramatic imagination. And then I’m offered that familiar, dismissive smile that lets me know I’ve come to the end of another road. I brace myself for what comes next... “Have you ever considered therapy?”, they ask. I sigh quietly, “Yes I have, but I’m willing to try again.” And snip-snap, just like that I’m referred to a psychiatrist to learn how to become less ill. This is the repetitive cycle of my health story.

 After thirty years and a cornucopia of psychiatric medications that made me feel worse, I learned that the best way to feel better is to stop telling doctors I don’t feel well. It’s not worth the risk, the humiliation or shame. And it’s definitely not worth the side effects of the latest and greatest pill, or the months lost while trying to be patient and give it time to work.

I’ve given decades! So, lack of patience is not my problem. Nor is lack of compliance. My problem is that doctors — through no fault of their own — haven’t been asking the right questions or ordering the right tests. But I didn’t know that at the time, and I hadn’t yet learned to trust my own experience of my body.

 Instead, I learned to believe that I am the problem.

“I’m a wimp. A complainer. Dramatic”

And that didn’t feel good.

So I adapted. I trained my brain to tolerate pain and label it as merely discomfort. I diminished my feelings to the point of dissociating from my body. And I learned to separate my perception of pain from my experience of pain. Distraction became my greatest ally. “If I can’t make the pain go away (and since I’ve been told it isn’t even real), I’ll just ignore it.”

 Hmmph.

 The problem with that technique is that you lose touch with what is real and what is not. And you start to feel like a fake, like you’re the emperor with no clothes, but the only one you’re fooling is yourself. And you begin to doubt yourself, not just in relation to your health, but also your opinions on other matters. You give up your own sense of true north and are left without a personal compass.

 Who can you believe, who can you trust, when you can’t even trust yourself?

 For me, the answer came unexpectedly. Like my own personal Mary Poppins riding in from the east with the winds of change: A new doctor.

 This doctor is different. David London is a psychiatrist (ack!), but also a Functional Medicine MD, trained in Chinese medicine and Buddhist meditation. For two years he quietly listened to my weekly word-dumps without suggesting medication. Instead, he taught me to breathe. And visualize. I learned to visualize comforting space at night, like a cloud around my pain. And it works well enough to let me sleep for a few hours, enough to be highly functional the next day. It’s the best I’ve felt in years, but my Mary Poppins-doctor believes I can feel even better, and he continues to contemplate the puzzle of my health.

 You see, Dr. London has this theory that we all have an inner bucket where bad stuff is stored. And for some people, the bucket is never filled. But for others, for reasons we may not fully understand, their bucket gets filled to the brim and eventually overflows. And this overflowing muck-bucket causes illness.

 I immediately envision a steamed lobster with a belly full of green tamale and tell him it’s disgusting to think of myself as full of toxic waste! He reassures me it’s not because I’ve done something foolish or wrong. It might even be genetic. And there’s a test that can prove it.

 I ask to have genetic testing and the results show that I am indeed one of the lucky few who has trouble clearing certain toxins. I don’t know how to feel about that. I feel both validated and discouraged. Ugh. It sounds like a hopeless predicament and I visualize the possibility of sending myself off in a canoe to disappear over the horizon.

But Poppins-doc has other plans. He encourages me to familiarize myself with the pioneering work of research physician Ritchie Shoemaker. Though sometimes deemed a controversial character, Dr. Shoe’s abundance of published papers and long list of appearances/testimonies before congress and parliaments are enough to convince me to pay attention to his ideas. That and the fact that he’s a really nice guy.

 Ritchie Shoemaker believes that some people have a genetic haplotype that prevents them from clearing toxins. And over time these toxins build up, and our bodies try to fight their effects in various ways, and some of these ways wreak as much havoc as the toxins themselves. All kinds of crazy stuff can happen — headaches, sweats, insomnia, chest pressure, foot cramps, ringing ears, aching hips, swollen ankles, shortness of breath, and most debilitating of all — cognitive dysfunction.

Yep. Brain Drain was the big one for me. When I first met with Dr. Shoemaker, he confirmed that cognitive issues are often the last straw for highly functional patients like me. We cope and adapt and carry on, thinking of our body as an obstacle to overcome. But when illness begins to take our mind, we grapple with the possibility that perhaps we are outmatched. No amount of visualizing will get our brains back. He said, “I’m sure you’ve been told ‘it’s all in your head.’ Well guess what? It is! And we can heal it.”

 Wowza.

I’ve been feeling validated for about two months now. My illness is real and according to the tests ordered by Shoemaker, my results indicate I have Chronic Inflammatory Response Syndrome (CIRS). CIRS is a multi-system, multi-symptom illness, not yet recognized by health insurance providers, but increasingly relevant in today’s world of bio, chemical and environmental toxin overload.

 I’m feeling hope that I may have finally found my tribe. Patients like me. It’s not a tribe many would choose, but for those of us who have had it thrust upon us, we are grateful to be named and recognized. My road to wellness is still long, but at least now I have a plan. And thanks to Poppins-doc and Dr. Shoe, I may just get my birthday wish in a year or two.

———

Shaler McClure Wright is fascinated with the mysteries of creative process and the healing power of creativity. She’s worked as an actor, writer and educator for more than 40 years, and lives in southeastern Connecticut with her son and husband.

www.shalermcclurewright.com

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That red brick fireplace, its ledge was strong but not that comfortable.  Cold in the summer, warm when there was a roaring fire.  It was the perfect spot to get close to her when she was sitting in her chair, I could hold her hand.  It was our confessional, our little corner of the world where we could talk, where nobody else existed.  Grandmother and granddaughter.  My mom, a nurse and my dad, a dentist, would occasionally break into our bubble, to hand her a dixie cup filled with milk and another cup with chemo pills.  In these moments, as a fifteen year old, I started to think about a healing profession and how nursing would allow me to help people.

But we had projects, my grandmother and I!  We sewed, read the paper, ate stale junior mints and just existed.  Her hands were always busy folding laundry, saying the rosary, crocheting for hours on end.  The world existed around her, and she was the center of our hearts.  Metastatic Breast Cancer, diagnosed in the month of October.  Columbus Day to be exact.  Wow!  How has it been 26 years since that day?  Oh how I still hate the anticipation of that month. 

The summer had disappeared over the horizon and the winter chill set in during those first few months of her diagnosis.  The big C, the diagnosis, the day, so vivid in my mind, we were told she had 6 months to live.  It felt like she was taken away already but only for a brief moment.  Can you catch cancer? Could I hug her? Could I love her the same? Why was I so afraid?   All the things that a 15 year old conjures up, staring cancer in its ugly face for the first time. 

My very devoted and religious, Polish grandmother, Kathryn Piotrowicz, went on to live well with terminal cancer for 10 years after her diagnosis.  Living independently in Philadelphia when she could and then back with our family when she became sicker.  It was a gift in so many ways but it was extraordinarily hard on my mother, who was her primary caregiver while also managing a multi-generational household.  It was emotionally tough.   

            July 21st, 1995

The day was a scorcher, 3 H’s, hazy, hot and humid.  One of those nights when the evening cooling wouldn’t make its way to the morning.  Coming from Boston with my baby sister, driving as fast as I could to my family’s home.  I passed Exit 6 on 95, it is imprinted in my memory forever.  This is when I stopped crying for about 5 seconds to realize maybe our Babci Kathryn wouldn’t wait for us.

The lessons learned from caring for the sick provide us humility.  They also hopefully help us to  focus with intention to live a life with no regrets.  But I have carried one regret around with me since her death.  

I wish I had known.  I wish I had known that it was ok to get close to someone when they were dying, that they could hear everything you were saying to them.  That hot July night that our Babci died, we made it to her.  Opening the back door to the house, it was normally full of life, but it was so distinctly quiet.  I followed 10 feet of oxygen tubing on the ground that led me to my childhood bed that had been moved downstairs for her.  I knelt by her side, she was tucked in with her sleeping cap on and she looked so small.  I was so afraid of the silence, the darkness, the aloneness.  I left her side not knowing how to talk to her, what to say. 

They say hearing is the last to go.  To this day, I still regret that I didn’t stay longer by her side to tell her how much I loved her, how proud I was of her and what an incredible gift she was to our family.  Her imprint on our lives would be forever.  She passed away 15 minutes after my sister I had arrived from Boston, that hot, hot July night.

I have to believe all these years later, that her story is part of my story.  She was a teacher, heaven sent with all the lessons I was to take from her to become a compassionate nurse.  To understand the complexities of ethnicity, poverty, perseverance and most importantly love.  My grandmother struggled.  Her husband passed away when she was 50 and she went on to raise 2 children with limited financial means, yet she moved forward.  Despite people’s differences, you can always use love as a thread.  As a nurse and nurse practitioner for almost 21 years, her experience has helped me tremendously with every patient interaction.  Her story has helped me stay centered and to always remember there is a person behind a diagnosis or long term illness. 

April 30th, 2020, it was the height of the pandemic.  It was my Dad’s birthday.  The skyline of Beacon Hill, the gold dome on the state house glimmering in the distance.  Coming from infusion on Yawkey 8, I hurried down the stairwell onto Yawkey 7E, to return to clinic.  All of our patients were worried about the virus, never mind a cancer diagnosis.  Pre-pandemic, the halls would have been buzzing with energy, patients waiting to check in, sometimes music playing, maybe even a painter giving patients painting lessons.  Now, it was eerily quiet, no noise, no conversation.  Almost like a holiday, but it wasn’t “ I need to call dad later to wish him a happy birthday,” I thought to myself.

I heard my phone ding, a text message from my college roommate and dear friend, Annalisa. I call her Al.  Her mom had been living with metastatic ovarian cancer for over 5 years. “Carol is not doing well,” she wrote. “I need to talk with you. I need your advice.”  Annalisa is not an alarmist in any way and had been doing a beautiful job of managing all things medical for her mom.  She is deferential and private and really never asks for help unless it is important.  My heart sank.  Not now, not during this pandemic. 

A year prior, I had convinced Carol to get a second opinion and to consider one more line of treatment, an oral chemotherapy medication, and she had done incredibly well with very little in terms of side-effects, until now.  Carol was a go getter, a busy lady, up early, late to bed with a smattering of things she did everyday.  With faith as her central anchor, she was living her best life during her cancer diagnosis, she learned to redefine her life after her beloved Roger passed away 10 years ago.  I was almost shocked to hear all of a sudden she was in trouble.  Why now?

As healthcare professionals, we are often asked our opinions.  What would you do, how would you manage this? April 30th, 2020, I did not want to give an opinion.  Not during a time when the medical world was making decisions around a surge of Covid cases, a virus that we didn’t understand, space availability, patients passing away without loved ones by their side. Professionally, I knew that Carol needed to come into the hospital to deal with her symptoms or she may pass away quickly.  Dizziness, weakness, shortness of breath. I suspected hyponatremia and potentially a pleural effusion or fluid in the lung.  Progression is what I feared, but I also knew Carol had been crystal clear that God was in charge, her worries were always placed in her God box. The oral chemotherapy was her last treatment option.  I wrestled with my mind, it was a tug of war.  Do I keep her at home and just let it go the way it is going to go, or do I tell her to come into the hospital to manage her symptoms and maybe get a little more comfort and a little more time with her family, to prepare. But we were in the midst of a pandemic. I wanted to be there for Annalisa, for Carol, to do the right thing, but my mind was clouded with emotion, because I love them. I told Annalisa to bring her in.

I waited, I waited, I was so nervous.  I had the proverbial pit in my stomach, my thoughts were racing.  I was asking my dearest friend to drive her mom to a hospital that was admitting Covid patients by the dozens.  What if this was the wrong decision, what if she passed away this admission?  What if she died alone, away from her daughter and son who were her everything?  I was grappling with my own guilt around being protected from COVID facing care due to my youngest child’s health issues, while many close NP colleagues were standing up an outpatient Covid unit.  I knew I needed to step up to the plate and help Annalisa, to help Carol.  Maybe this was where I was supposed to be.  I held on to my faith.

They finally arrived to the front entrance of the Yawkey building.  They looked so worried, those stupid masks made it all so unfair, it felt so transactional.  That we couldn’t interact in our normal way, a hug, a conversation.  Instead Annalisa was handing over her Mom, it felt deeply wrong.  Humor is sometimes our only defense in tense situations.  We had a quick laugh. They were late because Carol had forgotten her forbidden stash of communion her priest gave her. It is sacrilegious to have communion in your pocketbook, but we chuckled under our breath.  Only Carol.  She needed it, to know she was protected. The communion would provide her with solace.  In every way, it felt so reassuring. There was no decision to own. Carol wanted to be admitted.  She wanted more life despite her failing body. Her faith was intact and we would be ok. 

She looked weak, she was tired, she was scared but still the strong woman I knew. I came back to reality. Yes, it was 5:30 pm and still April 30th. Dad’s birthday.

Carol would be discharged with hospice within 48 hours to her home of more than 30 years.  Days turned into weeks and then months.  She was determined to make it to her 82nd birthday in July.  It didn’t seem like an impossibility.  She was strong and the hospitalization allowed her the pause to reset the clock

Now she was in-charge of the time she had remaining. 

We would spend the next 10 weeks learning about love, about faith. Annalisa and I were blessed with daughters late in life.  Our girls, 10 and 11 have always loved each other because of our life long bond.  The four of us - my daughter and I,  Annalisa and her daughter-- would be there on most Fridays visiting.  Carol loved it, we did too.  Annalisa with her fancy ice coffee in hand on the front stoop of Carol’s house, the girls riding their bikes to a little park, their own little space of happiness.  

Annalisa and I talked with Carol about her worry around death, about what things felt important to her, about her deceased husband. We just talked like we always did. There was so much peace in these weeks, it was like it was our own little confessional away from Covid, away from the big C.  The weeks were filled with normal summer activities, planting flowers, eating fruit, and the girls had their favorite junk food, ice cream, cupcakes, you name it.  There were lots of hovering feelings about not being at the Covid bedside as a nurse, lots of regret and guilt much of the spring and summer. But in this little part of the world, I helped one family. 

Carol would venture out of her house, everyday to sit in a beach chair, while people came in droves. Covid or no-Covid, her lifelong friends could not be stopped.  Lined down the street daily, with a honk, a wave or a quick gesture of love.  There was beauty transitioning to hospice, to have time for reflection with those that you love.

Carol passed away a little bit after her 82 birthday this past July 2020.  She taught me so much in her final months. She helped me spiritually.  You know, she was Polish.   

I go back to the seat on the brick fireplace as a young teenager. I go back to the night my grandmother passed away, to the words I did not say. I didn’t know how she was feeling when she was facing death. Was she scared? We didn’t talk about the legacy she hoped to leave behind.  

I often think of the countless families I have worked with as a nurse over the past 21 years. Being able to share knowledge, compassion and provide advocacy makes my own regret dissipate.  For Carol and my dear friend Annalisa, I knew what I needed to do.  To ensure that Carol did not suffer, that Annalisa was left with the tools and knowledge to help Carol with a peaceful death.  Annalisa and her brother Paul were incredible advocates for her and I know they will never live with regrets.  They were God-sent.

Hello, my name is Annalisa and this is the story of my mother’s battle with ovarian cancer as seen through my eyes, her only daughter and one of her primary caregivers. So, I guess you can say this is really also my story, in which my dear friend Rhaea Photopoulos, an amazing nurse practitioner here at MGH, is a very important character.

My mother Carol was born in 1938 in Lynn, Massachusetts to Polish and Lithuanian parents.  My grandmother worked in the shoe tanneries and my grandfather was a career machinist at General Electric.  My mom was a bright, only-child and a latchkey kid who spent her time playing outside, reading, or at the movies.

By the 1970s my mom was a happily married, stay-at-home mother to me and my younger brother.  My dad was in the grocery business and we lived a modest, middle-class lifestyle. 

It’s fair to say that when it came to medical issues, Carol was ‘old-school.’ Not to say that she was anti-Western medicine. Definitely not.  It’s just that she was never one to run to the doctors with us unless there was something obviously wrong like a broken bone. She was what we might call, an under-reactor.  

When my brother and I became teenagers, I swear my dad did the worrying for the two of them. My mom was a strong Catholic and would always say she was putting something in ‘god’s hands’ and not expending valuable energy worrying, because worrying wasn’t going to change the situation. 

Growing up I was ambitious, hard-working and a self-starter who my mother always said was going to be successful no matter what. I became self-reliant almost to a fault - always in motion, constantly doing, doing, doing.  I was babysitting and doing my own laundry by age 11 (remember, this was the early 80s – kids could do all that stuff back then!); worked a ‘real’ job at the hospital by 15;  ran 11 seasons of HS track. I earned myself a scholarship to Boston College  -and thank goodness -because my mom made it clear that she wasn’t about to mortage the house for me to attend college!  Carol didn’t mince words!  Boston College is where I met my longtime friend Rhaea. We met at the workout center known as The Plex, and became fast friends. Rhaea is the angel in this story, as you will learn. 

My mom was widowed in 2010 at age 72. The first few years were very difficult, but at last in July 2015 she decided to take a religious pilgrimage to France where she would bathe in holy water and pray for her long list of friends who needed her prayers. Little did she know, but by the time she was bathing in that holy water, ovarian cancer was actively growing inside of her.

After the pilgrimage, my mom followed up on a belly button infection from many weeks prior and learned that the biopsy result came back positive for cancer.  

The next stop was the gynecologist where we learned that my mom had a tumor on her ovary, and it appeared that the cancer had spread. She would need surgery ASAP. We were both stunned.

One of my first calls was to Rhaea. A caring, compassionate, palliative care nurse specialist at MGH, Rhaea was well-connected and knowledgeable.  Plus, she and I had been friends for 25 years at this point so she knew my mom well.  Mom and Rhaea had really bonded through their common faith and Polish heritage. Rhaea and I have been through thick and thin together, always showing up when it counted. After BC, we lived together for a couple of years during graduate school, and without Rhaea to watch out for me I don’t think I would’ve eaten one single thing besides pasta with broccoli and fake Parmesan cheese (the kind that doesn’t need to be refrigerated)!  Rhaea would always run out to Bread and Circus and get me some chicken to throw in there - just to make sure I had protein!  Giving and caring are just in Rhaea’s nature. 

With Rhaea’s help, we ended up in the office of a top-notch gynecologic oncologist and surgeon at MGH who held my mom’s hand and listened intently as Carol told her that she felt confident that everything was going to be OK.  My mom also told the doctor “she’s in charge” (and pointed to me).  “You can deliver all the bad news to Annalisa.” She then thanked the doctor and in true Carol form told her that she was in her God Box.   

I accepted the role of ‘receiver-of-all-bad-news’ and the one who is ‘in charge’ as a given; I wasn’t upset about the added pressure, but reflecting back on the experience I realize that it was a lot of pressure.  I thought that since my dad couldn’t be here, I would be the best substitute that I could.

And- I had my angel Rhaea by my side. 

The day of the surgery was the day before my birthday, August 21st, 2015.  

I stayed with my mom until they needed to wheel her down for anesthesia.  I remember clearly that she had plastic rosary beads entwined around her hands, because she was told that she could take the plastic beads into surgery but not the metal beads.  After she prayed over her medical team, she and I said our goodbyes and exchanged ‘I love you’s’

When the doctor called, she seemed to suggest that the surgery had been a great success, but in the same sentence she said something about my mother “possibly” having a “decent quality of life” for 2-3 years. 2-3 years. Stage 4 ovarian cancer.  I was in a fog and I felt that the doctor and I were speaking two completely different languages, so I didn’t fully absorb the conversation in the moment-it wasn’t until after we hung up the phone that it started to sink in. 

I decided to Google ‘ovarian cancer’.  What I found was that Stage 4 ovarian cancer statistics were not exactly something to be excited about.  Living another 5 years seemed quite possible, but another 10 years, well, you’d REALLY have to be one of the lucky ones. 

I felt a little numb and discouraged. And then I called Rhaea.  Calm, rational, and optimistic, Rhaea assured me that every case of cancer is completely individual and that in her experience patients with deep and abiding faith like my mom generally fare quite well.  I felt a lot better, and promised Rhaea that I wouldn’t Google medical stuff anymore.  😁

Fast forward to the beginning of Covid in April 2020, four years after diagnosis. My mom’s appetite and energy level were diminishing.  She mustered up the energy to come to our house for Easter, but sadly that day she would have her last (small) glass of Chateauneuf du Pape wine.  Kind of appropriate, I suppose, being the wine of the Popes and all.  Not long after Easter, I found her in such a weakened state that we went to the cancer center to get checked, marking the first time I had to drop her off with no option to stay, due to Covid. 

After reminding her to put on her mask, I somewhat reluctantly let the nurse at the front door escort her in. I flashed a half-hearted, nervous smile, thanked the nurse, got in my car, and drove away. 

After a short-term boost from hydration treatment, my mom was right back in the same place: light-headed, no appetite, congested, heart racing, mildly confused. When I brought Rhaea up to speed, she said we needed to get her admitted ASAP. …….

My mom acquiesced, though on the ride in she was very agitated.   Her bags were incredibly disorganized and she was pretty sure she had forgotten something - a special religious medal that her priest had blessed especially for her - that was super, super important to her and we had to go back for it. I still needed to get gas and didn’t want to be late, but I turned back, none too happy.  I was impatient, and stressed, and I yelled something like ‘we better not be late because of this!! And ‘it better be at the house if I turn back!’  

We arrived on time and there was Rhaea, waiting out front with a wheelchair.  I breathed a sigh of momentary relief at the sight of her.

The next 2 days in the hospital would be a turning point in the journey: the chemotherapy had ceased to be effective and the recommendation was to stop treatment and focus on preserving quality of life.  Rhaea cross -checked recommendations and simplified medical terms for me.  End of life intentions came up again, and here is what I knew of with certainty - my mom’s 3 final wishes: 1) remain in our family home; 2) have a funeral mass; and 3) live to her 82nd birthday on July 3rd.  Making it to her birthday was a wish that virtually everyone knew about.  She and my dad were nearly exactly 10 years apart and my dad died at age 82.  For some reason or other she felt that she would be reunited with him after having spent the same number of years alive as he had. 

Shortly after she came home from the hospital Rhaea came over to see her in person and to survey the conditions at the house.  When I walked her out to her car, she said, ‘She looks good. You’re doing the right thing, AL’ (her nickname for me). You’re doing an amazing job. I am here for you every step of the way. She won’t suffer. I PROMISE.”  This reassurance gave me a mini-boost. I went straight home and told my husband what she said. 

The final 8 weeks of my mom’s life would find me in survival mode with you name it, from my daughter’s remote schooling, to daily drugstore runs and new medications, to everyone’s laundry, to endless phone calls to coordinate visits or equipment deliveries, to worrying about Carol falling out of bed, and so on.  I literally felt as though I was moving in and out of two different lives every time I got up in the morning.  I had to get out there every day, get to the drugstore, interact with people. I tried to put the Covid risks out of my mind.   

During this stretch Rhaea made a ritual of driving an hour + every Friday to visit with me and Carol.  She would bring her daughter and our girls would ride bikes in my old neighborhood while we’d sit outside with Carol and chat. On one of the visits I remember Rhaea opened her trunk and out came potting soil, plants, garden tools and even a shovel!  I’m like WHAT are you doing????  Rhaea started digging up the soil under the front windows, right next to the porch where my mom would always sit. She said ‘People are going to be stopping by to see you Carol, we have to make this look nice. AL, where’s the HOSE???’  Another week, Rhaea showed up with some type of Polish food, hoping my mom would eat even just a little.  

July 3rd arrived and mom was weak. We barely got her to a chair on the porch.  Before we knew it about 50 masked friends and neighbors were gathered alongside the fence.  My goddaughter had painted a huge banner that we hung across the front windows and I had managed to keep a few of Rhaea’s spring flowers alive so Carol was literally surrounded by life and love.  She was so happy. She had her 2 children and 3 grandchildren by her side plus neighbors and friends of some 40+ years.  Some people wanted - even tried! - to come in the gate because they wanted to be close to my mother so badly. My husband did the uncomfortable job of reminding everyone that we were supposed to be social distancing!

One week after her birthday, the hospital bed was delivered.  Another Rhaea intervention. It was time, in fact it was past due. Mom had been sleeping in the recliner for several weeks, and she had fallen at least twice that I knew about. The bed was in the front TV room where she spent all of her time, in that recliner watching Mass on TV.  

She would live only 5 nights in that hospital bed, with my brother and me alternating sleeping there. Rhaea had suggested a night nurse, but I knew my mother wouldn’t want this.  I was in a robotic-like state these last several days, attending to details, wondering, worrying, when and how the end would look.  

My mom’s voice was quickly fading away but for about 2 days she could still whisper a few words with her eyes wide open – this in between increasing periods of sleep. Rhaea had told me a while back in one of her prep-talks, ‘she’s going to sleep a lot more but please don’t worry, she will be peaceful. 

The first couple of months after my mom’s funeral were both sad and strange. Strange because I had this intense feeling of peacefulness come over me that I had neither expected nor experienced before. I felt an odd sense of relief that I was shy to share with almost anyone outside of my husband and of course, Rhaea. I felt light on my feet, free from an underlying feeling of WORRY that I didn’t even know was there almost constantly for 5 years.

Rhaea and I talked or texted every day or two in those final weeks of the Summer of 2020.  The dreaded cleanout of my family home was ahead – a home that was literally packed basement to attic with memorabilia dating back over 100 years. The task was daunting but on that very first weekend, my angel showed up.  In Rhaea fashion, she was quick and decisive and she is totally hilarious, like a sweet wrecking ball when it comes to this stuff.  She had my brother and me laughing so much that afternoon.  I tried to laugh - you really had to - at all of the crazy clothes and jewelry and stuff that my mom had saved.  Within a few hours Rhaea’s SUV was packed with all of my mother’s winter coats that she was taking to a women’s shelter on the Cape. As she drove away that day, she assured me that she’d be back again.  And I knew that she would.

After three decades of friendship Rhaea and I were spiritually connected already, but now it is a much deeper connection, one that I believe is unbreakable and everlasting. I am in awe of Rhaea’s endless space for loving and caring, inspired by the depth of her knowledge and the empathy with which she executes the tasks involved with caregiving. She makes it all look so effortless. And she does it with a fantastic sense of humor!  She reminds me that while life IS serious, we cannot take ourselves too seriously.  

Throughout this journey, Rhaea propped me up when I felt as though I was falling, encouraged me when I was daunted by the endless unknowns of caring for my mother through the Covid crisis. The deepening of our friendship after this five-year journey cannot be understated.  SHE is the reason, I believe in my heart, that I was able to execute on my mother’s final wishes, and no one can ever take that away. Carol was able to die at home, in the home that my dad built for her and where he also passed away, free from tubes and extraordinary measures.

Rhaea was by my side during an experience that has changed my life forever, and I am filled with gratitude. 

Rhaea - I know you are in Carol’s God Box up in heaven, and you are surely in mine.  

“Can you ask my wife if she’ll be my roommate if I’m positive?” Mr. Jones yelled to me through the door of room 32 on Ellison 12. It was the spring of 2020, during the first COVID 19 surge, and I had been redeployed from my usual job as an MGH PACU nurse to work on a COVID unit. So many questions were yelled to me during those three months, as I rotated throughout the hospital, going where I was needed. From behind the glass on White 3, Ellison 3 and Wang 3. “Can you get me more syringes, pain medication, the blood sugar machine? Can you call the Prone Team? Do you know how to speak Spanish?” Mr. Jones’ question was an easy yet hard one to answer.

I started nursing school in the fall of 1988 in the middle of the AIDS epidemic, during a time when everything was changing. I remember my nursing instructors reviewing a new policy of wearing gloves for patient care that involved contact with body fluids. By the time I graduated I recall my first months of practice being inundated with traffic signal colored universal precaution bags outside the patient’s rooms. Red for bio hazard linen, yellow for standard soiled linen, and whatever you were unsure of was to be placed in the green containers. I was often afraid that I would dispose of things incorrectly during those uncertain times.  How was I to remember all of this as a new nurse? How would I pass my boards? I felt overwhelmed. I am pretty sure the patients did, too. How could they not? 

At these times, I would remember my father’s words: “Talk to the patients, have them tell you their life stories. Don’t let the technical part of your profession make you lose sight of your vocation.” When I was 15, my father, a brilliant nuclear physicist, told me to become a nurse because, as he put it, I cared about who people are and what made them special. “You ask people questions and you listen,” he said. 

So, I followed his advice and did what I was good at, asking and listening to stories from people in times of need. “What’s your favorite vacation spot?” I would ask. “What’s the most entertaining concert you have been to? What’s your favorite food (outside of the hospital, of course)?” 

In 1995, after meeting my husband on a beach while watching a sunset, I moved to Boston to be near him and started working at MGH, where I spent 15 years caring for cardiac patients. Cardiac medical situations can be extremely stressful. I tailored my questions. “Who makes your heart feel good and how did you meet them?” I would listen to the answers -- “my mom”, “my grandson” and sometimes even “my dog,” followed by the story of why and how they met. These moments of listening to someone share with me a moment of their life that was not filled with fear, pain and anxiety was a connection. A connection that I was honored to be a part of.

For the last 10 years I have worked in the post anesthesia recovery unit—the PACU--for patients going home the same day after elective surgery. For me, this nursing environment has been less stressful than I experienced as a cardiac care nurse, yet for my patients it is still quite stressful. I ask the same question just worded differently. “Who is bringing you home and how did you meet them?“ These stories bring smiles, to me and to the patients who are sharing, and these smiles seem to lessen the post-surgical pain.

Now 30 plus years into my nursing career I have come full circle. There is a pandemic. Everything is changing. There are new policies and procedures seemingly changing every day. I am overwhelmed. Patients are alone and fearful, but they have stories and I am good at asking and listening.

The day I met Mr. and Mrs. Jones I was the float/helper nurse on a step-down 36 bed Covid unit. I had not provided patient care as a clinical bedside nurse in eleven years. As I walked onto the unit that overwhelming feeling of disorientation I had 30 years ago returned. So many new protocols to remember. Donning and doffing my PPE. Would I remember the proper sequence to keep myself and others safe from this virus? I actually had written a cheat sheet of the step-by-step order on a 2x2 pink post-it note and taped it to the back of my name badge. My MGH ID in a clear plastic sandwich bag I had brought from home. The plastic making it easier to clean at the end of my shift.  

During my 12-hour shift I was informed at morning huddle that the unit census was full, with one patient—Mr. Jones --alone in semi-private room because his Covid test results were still pending. His wife, who was known COVID positive, was in room 16, bed A, with a COVID positive roommate in bed B. Mr. Jones was in room 32, bed A. Bed 32B was empty. The charge nurse of the day continued on with the rest of the unit updates but I remained focused on her description of “the non Covid/pending covid“ patient in bed 32A. How isolating that sounded. I had been self-isolating from my family during my deployment. I had already been tested for covid the first two weeks of the surge because I had rash and a sore throat. I knew that lonely, impending doom feeling of waiting for results.  I worried about Mr. Jones, a person, not just a case in bed 32A. 

I met Mrs. Jones in the morning as I administered her medications. She exhibited many of the classic Covid virus symptoms – including body aches and loss of her sense of taste and smell. She also had a noticeable cough and an oxygen saturation of only 90 percent. She required supplemental oxygen and was receiving multiple medications and breathing treatments. As I administered her medication, she mentioned that she was waiting to hear how her husband was feeling. “I really hope he has a better view than I do,” she said, as she sat upright in bed. She was slight in size and her enormous black purse, next to her on the mattress, seemed to fill all the space.  She kept on taking articles out of her purse and laying them on the bed next to her. She took out her cell phone, looked at it, turned it in her hands. She rummaged and dug deep, pulled out a lip stick, crackers, keys, a small package of tissues. She then systematically put them back into the bag in the same order she had removed them. Watching her fidget, I thought to myself that she must be worried about her husband. 

The room 16A in the Ellison tower is the room near the stairwell, with no view. If you stand at the foot of the bed and look out the window, all you see is the corner wall of the Lunder building – solid and gray. I encouraged Mrs. Jones to sit in the chair and have her breakfast. With much hesitation and cajolement, she was sitting in the recliner chair within the hour. As I was leaving her room, I asked Mrs. Jones if she would like me to check on her husband for her and if it was OK if I gave him an update on her condition. She replied that she was so exhausted and worried that she would appreciate it if I did.

I stepped into the hallway to doff my PPE – removing the disposable gown, the hair bonnet and gloves, everything but my N95 mask which would remain on until my short lunch break, for seven hours straight. The indentations and sore on my nose would last for many days. 

As I donned a new set of PPE outside the door of Mr. Jones’ room 32, I could see blue sky and the Charles River. The beautiful view made me breathe easier. I spent the next two hours administering care to Mr. Jones, just the two of us in his room. Me with gown, gloves, face shield and an N95 mask. Him with just a hospital gown and slippers. I asked my questions. “Tell me Mr. Jones, how did you meet your wife” I have no idea how much time passed in that room. Mr. Jones told me how he met his wife at a Red Cross dance. He recalled she was there with her sister. He laughed when he told me she wouldn’t dance with him when he asked her. They sat and drank coffee instead. He asked her to marry him two days after they met! He told me how he had gone to be a soldier in World War II.  With his return he and his wife raised a family in the city of Boston and now his children lived in the same neighborhood with their children.  With all the conversation he became short of breath and required oxygen. “My wife and I do everything together,” he told me, “so I know that we both caught Covid. I really miss her now. Can you ask her if she’ll be my roommate if I’m positive?”

Mr. Jones’ results came back as positive for the Covid virus at 6pm. My shift ended at 7pm. Before I left, I mentioned Mr. Jones’ request to the nurse in charge. “Only if they both agree,” she replied. I called into Mr. Jones’ room, utilizing the mounted iPad to ask his permission to disclose his results to his wife, as well as to confirm his request. He agreed. After donning PPE once again, I walked back into room 16A to meet the concrete wall view, paling in comparison to the Charles River of 32A. I informed Mrs. Jones that Mr. Jones had tested positive for the virus. “Your husband would like to propose an idea. If you would like, you can become his roommate in bed 32B. You can recover together, and he has a fantastic view from his window.” With the smirk of a wife who had been married for 40 years, she agreed. With help of other staff members, we wheeled a masked Mrs. Jones into room 32. Rolling into the room, her husband’s face lit up. Looking out to the Charles, she turned to her husband with a smile in her eyes and said, “I’m here for the view”. Mr. Jones then asked me a question that during this Covid pandemic I was happy to answer. “Can you see why I missed her?” 

I never went back to Ellison 12 after that day. My rotation on the unit had ended. The next four weeks, I cared for Covid patients in the ICU overflow units, the post anesthesia recovery care units that I had worked in for the last 10 years converted to serve this purpose. The patients were ventilated, sedated and really sick.  I was fearful, anxious and scared. In my thirty years as a nurse I had these feelings during emergency medical situations, but the moments had always passed. Now, day after day in the Covid ICU, these moments lasted longer. It was me, the nurse, who now needed a sense of connection to get me through. But sometimes I was paralyzed.

I remember one evening when I was caring for a patient named Juan, working with my nurse colleague, Bonnie. Every night, Juan’s wife would call the unit at a scheduled time for an update on her husband's condition. A medical interpreter would also be on the phone to translate our report into Spanish. Juan was still on the ventilator, too sick to speak for himself. That night, before the interpreter was dismissed, Bonnie asked Juan’s wife important questions that I was too overwhelmed to ask in that moment: “What does Juan do for fun? Does he fish, watch sports? What are his grandchildren's names?” Juan’s wife answered with tears in her voice that we did not need an interpreter to understand.   I could breathe again. I asked her “How did you meet Juan?” Her reply “En la playa.” At the beach.

Unknown to me, Bonnie had been asking patient families questions about their loved ones and then creating story board posters for the patient rooms. These beautiful posters were the connection, lining the walls with brightly colored pictures of the patient on vacation, with loved ones, with the names of loved ones written in colorful letters next to the photos. The following evening Juan’s room was decorated with a poster featuring a photo of him and his wife. That day, the anxious feeling that had been weighing me down lifted a little. The connection that I had been working to create for my patients for so many years had now been created for me.  I finished my shift that day recalling the photo of Juan and his wife at the beach and their smiling faces.

Now, the PACU is no longer a Covid ICU. Elective surgeries are again scheduled. I guess we are “back to normal,” but not really. Being a nurse during this Covid pandemic has changed me and opened my eyes. I now become more concerned when patients are alone. Where are their support systems?  When I ask a patient the question “Who is taking you home and how did you meet them, “ it’s different. Sometimes, the answer is “I have no one.” I now take more time than before to help them find someone, so they won’t be alone. I am grateful for my peers who do the same, and who ask patients questions that help us see their humanity. I think often of the Jones' and how Mr. Jones’ question -- “Can you ask my wife if she’ll be my roommate if I’m positive?” --brought a smile to my face and a connection to my heart amidst the surge of unanswerable questions. 

Written by: Laura Beretsky

July 15th marks the six-month anniversary of Laura’s Law, which sets standards for signage, lighting, security monitoring and intercoms outside locked hospital doors.[1] That it took somebody dying outside the E.R. to require these obvious essentials is a sad statement about our medical system. The law was championed by journalist Peter DeMarco, whose 34-year-old wife Laura Levis died of an asthma attack outside a local Emergency Room. She had taken herself there at 4:00AM in September 2016 but called 911 when she couldn’t find the unapparent entrance. Sadly, the ten minutes between Ms. Levis’ call, and when she was found in cardiac arrest cost her life.

Mr. DeMarco published a Boston Globe article detailing her story in 2018[2]. Reading the details of her preventable death, I was horrified and spellbound, struck by the systemic patient powerlessness built into the medical emergency system. I’ve had my own challenging experience accessing hospital’s emergency services, and while it wasn’t fatal, it was similarly subpar.

On June 28, 2014, I was taken to the emergency room where the neurosurgeon on call performed a life-saving craniotomy to remove a subdural hematoma. I woke up the next day woozy and disappointed. I have a history of seizures, and the hematoma had developed following an elective brain surgery I’d had two months prior.

I was surprised when the hospital discharged me the following day – I’d just had my head cut open, after all. I felt vulnerable because I was: I was readmitted to the same hospital two more times that week following grand mal seizures. The second time was an hour after they’d released me. It was the Esplanade annual fireworks night, so my husband, Mark and I decided to avoid traffic and take the subway home. Two stops after boarding, I felt tingling neuropathy in my left hand -the same precursor for the seizures I’d recently had. I wished I were back at the hospital!

“I’m afraid I might have another seizure. We need to get off at the next stop,” I told Mark. Approaching Harvard Station, I anticipated the train’s brake, and tried not to freak out as the tingles in my hand traveled up my arm. The last two grand mals didn’t kick in right away. I will probably make it to the hospital, I thought. “Maybe we should call 911,” I said exiting the train.

“No, traffic is miserable because of the fireworks. It’s only three stops - let’s take the train,” Mark said. Based on the past week’s experience, if I were about to have a seizure, we’d make it on time. Financial calculations bolstered my timing estimates: Health insurance wouldn’t cover an ambulance bill. We took the train, arriving at the T stop in ten minutes. During that time, the tingles had traveled up my arm and onto my face. I was coherent, but terrified - my body was succumbing to a seizure’s bedlam. Mark escorted me through the hospital lobby to the reception desk.

“My wife’s having a seizure. She needs help,” he urged. The administrator looked at us like we were from Mars.

“What’s your name?” she asked me.

“Laura Beretsky.” I was lucid, but the prickly sensations had spread to the other side of my face. “I was discharged less than an hour ago.” I added.

“Address?”

“She was just discharged!” Mark snapped. “Can’t you find contact info in your computer?” The woman impassively typed.

“So, you’re still at 64 Hooker Ave?” Were they friggin’ serious? Did they really think my address had changed in the last hour??

“That’s right. All the information is the same.” Mark retorted, annoyance overtaking his typically calm demeanor. “She’s going to need a doctor any second. Can you please get somebody?”

The woman completed her electronic intake. I saw her call to another staff person before losing awareness. I know eventually staff took me to a hospital room, as I woke up there the next morning. After that seizure, they kept me five days, during which time I had my fourth grand mal seizure that week - I was grateful I was inpatient this time.

Just as Ms. Levis knew she had to be hospitalized in September 2016, I knew my brain was too fragile when I was discharged post-craniotomy. I wasn’t surprised that I needed to be immediately readmitted that day, but I was shocked by how hard it was to get back into the hospital.

When I read the circumstances of Ms. Levis’ death years later, I was appalled but not surprised. Had Mark and I opted for the ambulance, there would have been no questions asked by hospital administrators. Medics would have brought me in and relayed medical details to staff. Instead, we made the decision to take ourselves to the hospital. Like Ms. Levis, our choice to independently seek out emergency care led to glitches when we got there.

Ms. Levis’s home was near the local hospital. I suspect one reason she chose to walk there was that it seemed like the simplest way to get from point A to point B. I felt the same way when I compared taking the subway to waiting for an ambulance navigating holiday-driven congested streets. It’s very possible that the cost of calling an ambulance also played a role in Ms. Levis’ decision. That patients must calculate dollar amounts into the equation of making safe healthy choices, as hospitals focus on the bottom fiscal line is another derogatory statement about our healthcare system. Patients are damned if they call 911 -with a bill- and damned if they don’t - with hospitals that may be ill-equipped to assist them.

Thanks to Laura’s Law, the signage and lighting at the local ER Ms. Levis tried to access are clear, the clinic obvious to passersby, and patients can communicate with staff via intercom[3]. While Laura’s Law doesn’t address penny-pinching discharge protocols and unaffordable ambulance fees, it improves patients’ ability to independently access care, an important step toward patient empowerment. Clearly there is more work to do.

[1] Governor Baker Signs ‘Laura’s Law’ | Mass.gov

[2] Laura Levis was left to die outside an ER. Why were the doors locked? - The Boston Globe

[3] CHA Somerville Campus (challiance.org)

Author description: Laura Beretsky is a Somerville-based writer working on a memoir about the challenges facing those who live with perceptible health conditions.Please visit her website at https://lauraberetsky.com/   Her work has appeared in Cognoscenti, Sisyphus Magazine, Wire's Dream, and The National Library of Poetry, and Cognoscenti.

Uniquely present to the intimacy of direct patient care, nurses have always been on the frontlines of healthcare, and especially during the COVID-19 pandemic. 

On May 5th, 2021, Health Story Collaborative hosted a “live” virtual storytelling event at Mass General Hospital as part of the 2021 Nurse Recognition celebration.

Our goal was to honor both patient and nurse voices and to highlight nurse-patient relationships. 

Featured storytellers included: 

• Michelle (Mitch) Vassilopoulus, RN, a staff nurse in the Wang Center for Perioperative Care who was deployed to COVID units early in the pandemic, during the months of March and April, 2020.  

• Rhea Photopoulos, a Nurse Practitioner in the Tucker Gosnell Center for Gastrointestinal Cancers in the MGH Cancer Center and her dear friend and college roommate (28 years ago!), Annalisa di Palma. During the pandemic, Annalisa’s mom, Carol, was admitted to MGH for worsening ovarian cancer and was ultimately discharged home with hospice. She died on July 15th, 2020. Rhaea played a significant role in Carol’s care and comfort and the end of her life. 

“You’re exaggerating; it’s just anxiety.”

 In March 2020, Elizabeth experienced her first symptoms of COVID-19; they persisted a year later. Listen to her story of struggle and persistence, dealing not only with a host of health issues but also with dismissiveness and disbelief, which many individuals with long-haul COVID have faced.

Health Story Collaborative · Long-Haul COVID: Elizabeth’s Story

Elizabeth Pugh is an actor, playwright, singer-songwriter based in New York City. www.elizabethpugh.com

Body Politic’s COVID-19 Support Group: https://www.wearebodypolitic.com/covid19 

Photo credit: Ed Cunniceli

By Doretha (Dee) Burrell

It all started in January 2007 after having yearly mammograms as usual, but for some reason, this particular mammogram came back abnormal.  I was on vacation in Cancun, Mexico when I received the call that I had breast cancer.  My first thought was “You have to be kidding me. I am 50 years old.” 

Sometimes we have no idea why things happen to us, but I have learned through my journey of battling breast cancer to simply not even ask the question, “WHY?”  Some things we simply do not have control over, so we must roll with the punches, as they say.

Going through cancer was tough, and to make matters even worse, as I was battling cancer, my mother was also diagnosed with cancer, and she passed away.  I felt like I had been hit with a double whammy. 

My treatment consisted of surgery (lumpectomy), chemotherapy, radiation, and two full years of participating in a clinical drug trial, all in the hopes that my cancer would not return. I experienced FULL hair loss - it was weird to be totally bald, but thank goodness, as a former model, I knew how to change hair styles by using wigs! It was not too devastating wearing a wig on my bald head.  I honestly believe having the experience of changing the hair styles so often actually saved me from going through severe depression when I did lose my hair.

Fast forward 14 years, and I am living cancer free, but cancer has changed my life significantly. First and foremost, it has changed the way I think about myself.  I actually learned to LOVE myself.  After battling breast cancer, I began to see a whole new me…a strong, beautiful, courageous lady who realized on the journey of treatment, surgery, and the emotional ups and downs how important life is and how to be grateful for each and every day that I am blessed to live.

I no longer hold on to anything or anybody that is not adding joy in my life.  Letting go is one of the toughest things to do, but it was essential for me to take time to clean house, so to speak.  I noticed I was no longer hesitant of ending bad friendships, bad jobs, and folks that did not treat me the way I want to be treated.

I also realized my spirituality keeps me uplifted, and perhaps it was there all along, I just never stopped to appreciate it. I love life and have accepted the good as well as the bad.    

Recently, I became certified as a life coach to help bring out the hidden treasures in others, so they can acknowledge their gifts within themselves.  Life is so different for me now.  I don’t have a problem of stepping outside my comfort zone….so much so, that after working 20 plus years in a professional career, I am now working part-time as a host at a waterfront restaurant!

I have never worked in a restaurant before, and here I am in my sixties with my neatly coordinated outfits and heels welcoming guests and escorting them to their table to enjoy a lovely dining experience. Ladies, you know how it is trying to be stylish, but sometimes those heels can get the best of us! My first week working at the restaurant, I wasn’t even sure if I were going to be able to get out of bed each day and walk…whew!  I am sure I have purchased every bag of Epsom salt in a three-mile radius of my home to take soothing, muscle relieving baths.  As time passes, I am finally actually enjoying the host job.  

I have learned to meditate, slow down, accept life as it is right now, and keep on striving and thriving.  I am doing things that I have never done before cancer and I look forward to seeing where this journey will take me.

Trust me…had I not battled cancer and have the opportunity to enjoy a second chance in life, I would not be stepping outside of the box and my comfort zone.

So, YES!  My illness has changed my life forever! 

Doretha (Dee) Burrell

Dee is internationally recognized as a Certified Diversity Consultant with special emphasis in Women’s Issues, Certified Life Coach, Public Speaker, breast cancer advocate, published author and she has earned her Competent Communicator (CC) pin and title with Toastmasters. She is a breast cancer survivor, and credits her daughter Andrea and granddaughter Jayla with keeping her happy and full of zest for life.

By Kelly Keena

I wouldn’t say I was reckless, instead I would call it young and lacking confidence. I was a college student, living with two friends in a fabulous neighborhood in east Denver, waiting tables, and living a very active, ahem, nightlife. Never any of the big drugs, mostly drinks. A lot of drinks. And cigarettes, dammit.

When I did not feel good on my twenty-first birthday, I pushed through. Stubbornness has nearly killed me and saved me. I went out anyway to the bar owned by the future Governor and played pool with my friends and did shots of whatever they handed me. The next day, I felt more than hungover. A week later, I was in a drug-induced coma with a stubborn staph infection in my lungs. My last rights were read, my friends told to say their goodbyes. And then, I woke up and recovered for the next seven weeks in the hospital. This was the beginning of a very long slog through a chronic disease.

Two years later I had the diagnosis of bronchiectasis due to the infection that ripped through the lower left and upper right lobes of my lungs. Two places that live inside my body that are unable to do their jobs. As a grad student doing my internship teaching environmental education, I taught form and function as related to the beauty of the natural world. The form of my lungs overtaken by an infinitely small bacteria and they could no longer function. 

My friend’s mom offered me a job at her small coffee shop right off of the main artery to the Rocky Mountains, at the highway exit where I argue you get the most spectacular welcoming view of the first range of snow-covered peaks. We had some tourists, but our customers were mostly locals from the mansions and less-than-mansions scattered throughout the trees. One of these regulars was a nurse in the cystic fibrosis (CF) unit at our Children’s Hospital

For months we shared a similar exchange. She would hear me cough and say, “That sounds like a CF cough.” And I would reply something like, “It’s not CF. It’s bronchiectasis from my staph infection.” I called it “my” infection because somehow I had proclaimed it as part of my identity. She would then reply, “You should ask your doctor.” I would hand her the coffee and thank her.

Finally, I did ask my doctor. We would have a similar exchange as the nurse and I, only this time I was on the other side of the argument. He eventually caved and ordered a sweat chloride test. There is a higher concentration of salt in the sweat of people with CF and this is used as a diagnostic tool. To measure the salt content, they put a solution on a small cotton pad on the inside of my forearm. They connected electrodes that created tiny buzzing pulses causing the area to sweat, which was absorbed by the cotton pad. It didn’t hurt, the sensation was more like an annoying scratch. The nurse attached the electrodes and casually said, “CF, huh. You should have been dead a long time ago.” I guess I didn’t know what CF was. 

Two weeks later, I was studying for an exam with a friend sitting at her oak brown kitchen table worn by the coloring of her young daughter. My doctor called and I listened to him say that the test was inconclusive. I stared at the framed photo of my friend’s mom in a funky dress, pregnant with my friend and holding a cigarette in one hand, a martini in the other. Our medical understandings have evolved so much in our short lifetimes.

I went back for more tests. They drew blood and sent it for genetic sequencing. In total, the process took about two years. Two weeks before my wedding to the man who does not wince when I cough, in my parents’ backyard with the same beautiful Rocky Mountain backdrop, I received a call from National Jewish respiratory hospital. I had cystic fibrosis. I needed to come in and connect with the adult CF clinic. That same summer, a 63-year-old man was also diagnosed with CF. 

On the heels of the diagnosis, I had pneumonia again, one week before the wedding. I had pneumonia three to four times a year since the staph infection. Stress had a way of laying me out. On good days, my cough sounded like a gurgle of sludge. With pneumonia, the gurgling was muffled, my lungs full of putty-like mucus, drowning in my own body. Planning big events is difficult as pneumonia was difficult to pencil into the calendar.

This hospital visit was new. Different. I had a private room without the flimsy curtain that was intended to separate patients but didn’t. Everyone from the medical teams and custodians and those delivering trays of rubbery food was gowned, masked, and gloved. I felt like an alien under investigation. Only later did I learn that the protective measures akin to what we are all so used to seeing throughout Covid, were to keep from spreading a special bacterium common in CF patients. I was not yet skilled in the art of asking questions and advocating for myself. I just sort of went with it. 

My doctor and nurse had wry humor and wit and a reasonable dose of seriousness. They listened to me, to my lungs and to my words. They continue to lead my care team more than twenty years later. With CF now added to my identity, I got an IV between my toes. The veins in my arms protested any attempt to intrude. I was grateful for their resistance. I had a sleeveless wedding dress and avoided the dark purple and yellow smears that lasted for weeks after the needles.

I never got to tell that nurse that she diagnosed me. Without her, I wonder if anyone would have figured out that I had this genetic recessive disease if she didn’t like coffee. Nettie, if you’re out there, thank you. 

I call CF my 2x4 to the head, my awakening into self-care. I still feel a bit of shame when they refer to me as a former smoker at the clinic. I automatically reply, “I was young.” My husband who doesn’t wince when I cough calls it my “sit-your-ass-down” disease. In my late teens and early twenties, I was not taking care of myself. I didn’t know who I was aside from wanting to teach children how fragile and resilient our natural world is. I learned that I am also fragile and resilient. CF is now my barometer and friend that tells me when it’s time to rest, take good care, and sit my ass down. 

The acceptance was not readily available, though. I am only talking about having CF now, after all this time, to you and even to my family. It has been an intensely private experience. Like my hardened off veins, I shuttered my life with a chronic disease from everyone. I commonly hear, “but you don’t look sick.” Even my husband and daughter are just now learning about the intricacies of CF inside of my mind, although they are most attuned to my lived experience. I will always wonder why it is so much easier to write for strangers than to admit such things to the two people who are my world.

CF for me is not as much about the illness as it is about the recovery. Chronic healing is a life of getting laid out and then getting up again. And again. And again. Resilience can be a tricky term, sometimes used to shame those of us who can’t get up again. I argue that there is nothing wrong or bad about laying down for a while. Recently, I laid down for five years crippled by depression and anxiety from repetitive hospitalizations. I think there is a misunderstanding of chronic disease, that it is always the physical illness. It’s not. It’s actually always the looming threat of illness while working to maintain the demands of life. And being easy on ourselves for the complex mental gymnastics that accompanies normalcy and illness. Chronic disease is as chronic for the body as it is for the mind.

Chronic illness has become my greatest teacher. It reveals the grand paradoxes of my one life – the beauty of small things like a bird call and the pain of large things like cancelling an international trip with my daughter the morning of departure because my lungs were bleeding. Chronic healing has meant a life of appreciation, acceptance, and yes, sometimes terrible physical pain and mental exhaustion. Chronic healing is what we do in chronic disease. We don’t have a choice. It takes us to the edge and then allows us to recover. What I do in that recovery, I hope, defines me more than when I lay down and surrender to a rest.

Kelly Keena, PhD is an environmental educator and adult living with cystic fibrosis near Denver, Colorado. 

One Provider’s Journey From Diagnosis Through Stem Cell Transplant

Judith, a P.T. Clinical Specialist in Chronic Pain, had decades of clinical and teaching experience. At age 58, she received a diagnosis of Multiple Myeloma, an incurable blood cancer, with no clear and accepted treatment path, and a limited life expectancy. She unexpectedly began writing and performing as part of a class to help her manage her feelings and experiences. This serious, yet often funny show, demonstrates her transition from provider to patient and what lessons this role reversal may have for others.

Much of her motivation for writing and performing this piece comes from the way the media portrays cancer heroes, cancer miracles, and people that fight for their lives. She presents options other than the fighting model as a response to cancer. In the course of the show, using actual conversations with providers, Judith portrays her interactions with the medical establishment in hopes that there can be a better understanding of the journey and choices faced by a person with a catastrophic diagnosis.

To hear more from Judith you can follow her on Instagram @cancercafeperformance or Facebook.

Long-haul Covid-19 is a new and unfamiliar challenge for patients and providers in our world today. Listen to this pioneering physician tell his story of opening and running a clinic for long-haulers.

Produced by Annie Robinson and Winslow Ferris

By Estela Lugo  

Watch Estela perform her story live here.  

1996

Dammit...dammit...dammit! My panic echoed off the chocolate marble vanity, bouncing off its shiny gold fixtures and into a rising pile of lemon-scented suds. It had only been 2 short days since I had convinced my father to reluctantly pay a whopping $80 for a brand-new tuxedo. I wasn’t sure what hurt more now, the fact that I had wasted his hard-earned money or the sharp and familiar stings of humiliation and failure. 

The platter-sized stain looked even bigger now in the wall to wall mirrors. Even through my blurry tears, I could see it staring back with scathing judgement. “What the hell were you thinking? A waitress, really? I continued scrubbing through the layers of stubborn marinara sauce, praying that no one from the staff or wedding party would walk in to find a defeated, and disabled teenager experiencing one of the most humiliating moments of her life. 

How in the world was I ever going to have a job with this stupid disease? I could still see the look of concern on the guests' faces from earlier that evening. One woman had even declined my offer to pour her tea after noticing my uneasy grip on the pot handle. In concern for her own safety, she insisted on pouring it herself while throwing me a look that clearly stated “Girlfriend, you are not coming near me with that pot of burning hot water”   

And she was completely right. I had no business thinking that I could be a waitress. Not with these clumsy hands and hazardous feet. I was a danger to myself and now I was a danger to others. 

I wish I could say there was a time in my life when I felt “normal”, but there really isn’t. Some of my first memories include sitting on the number rug in my Kindergarten class and showing off my new plastic leg braces to friends.

I mean, it didn’t really seem to bother me back then. But as the years passed by, my confidence took on more and more hits. I was in 3rd grade now and needed a runner for softball. I was getting tagged out way more than anyone else on the team and my mom had finally decided to talk to my coaches. Easy fly balls were dropping right through my mit...and as much as my poor parents tried to oil, stretch and wear down that leather, it still felt like concrete everytime I put it on.

My most recent dance recital had been more stressful than exciting. I could only stay up on my tippy toes for 2 or 3 seconds now before my ankles gave way and dropped me back to my feet. So at the ripe old age of 8, I hung up my ballet slippers and retired.  2 years later, my cleats and mitt joined them in hopes that one day, I’d find my “thing”.

But despite the regular moments of disappointment, life was still pretty damn good. I had two incredible Puerto Rican parents whose lives and hearts revolved around me and my younger sister, Melissa. Despite not having any family history, Miguel & Eneida had been dealt powerball odds of having, not one, but both of their daughter’s diagnosed with Charcot-Marie-Tooth, also known as CMT, before the age of 4. All they had been told by the doctors was that their daughter’s hands and feet would progressively weaken over time and that there was no treatments or cure. Where many families could have fallen victim to shame, self pity and despair, my incredible parents decided to become overnight advocates. 

1987

“I sent your photo to some people the other day” my mom said as she brushed my hair into a tight ponytail. “They want you to be the poster child for Long Island” “Mooommm, what? What does that mean, a poster child? “They want us to take photos at their events and help them raise money for a cure.” 

Now, I don’t remember formally agreeing to this poster child thing, but I do remember that soon after that conversation, my family's life was forever changed. Every weekend, between 1987 and 1992, involved us traveling to some kind of fundraising event, sometimes even 2 or 3 in one weekend. And it wasn’t just taking pictures either, we were speaking in front of crowds of people, being interviewed on local news channels, meeting celebrities like Sammy Davis Jr. and Ron Darling. Sometimes we’d even put on impromptu lip-syncing performances at high school dance-a-thons (did I mention this was the 80s?).

They were some of the greatest years of our lives. One of the best parts of it all was the healing it provided for our family. Advocacy had quite literally turned my parents' pain into purpose while also building up my sister and I’s confidence. We were exposed to a world of passionate, generous and caring people. We grew up experiencing the importance of volunteer work, service and community. And we developed a deep sense of humility and gratitude for the challenges we did have because we now personally knew many families whose daily battles dwarfed our own. 

But like all good things, they must come to an end. Melissa and I eventually aged out of our poster child status and into tweens with social lives. My parents still ran the local volunteer chapter as well as the annual telethon call center. Mom went back to working full-time and life was just busier.

1992

“Am I really not going to have to wear braces anymore?” I had anxiously asked this same question during every appointment for the past year, terrified of hearing a different answer.“I don’t see why not, kiddo. You’ll have all the support you need after we straighten you out.” Dr. Gruber said in his warm NY accent, reaching into his white coat pocket and pulling out a voice recorder to document his latest observations. He was a well-respected and kind surgeon with a full head of salt and pepper hair who never had less than 3 or 4 med students parading behind him, in and out of every room. He’d poke at my motionless and twisted feet inviting them to take a closer look while he used big words like atrophy and dorsiflexion.

It was early June of 6th grade when both of my leg casts were finally cut off. It had been 12 long and painful weeks of recovery. For the first 6 of those, the rigid white plaster had wrapped all the way up my thighs, stopping only a few inches from where my New Kids on the Block underwear started. This made showering and bathroom time loads of fun. For almost 2 months, my day mainly consisted of being carried from my bed to the bathroom and back to the bed. One weekend, we got hit with a nor'easter. My parents bundled me up as best they could, layering blankets over my legs and open toes before wheeling me outside onto the freshly shoveled walkway. My dad positioned me right up against the base of our snowman, handing me fistfulls of packed snow to slap onto the torso. I laughed as my sister did her ridiculous Christmas Story impression… falling back into the snow and flailing her arms as she attempted to get back up.

By Easter, I was using crutches to get around. It felt good to be vertical again. The air was blooming with new possibilities and it felt energizing to know the most difficult days were now behind me. Dr. Gruber had successfully fused and straightened my floppy, crooked feet into a 90-degree angle just as promised. My new mission that summer was to learn to walk again in time for my first day of Junior High School. I had already begun clipping out back-to-school looks from my Teen Magazines; plaid skirts and grungy floral dresses…you know, the kind that Drew Barrymore and Courtney Love wore— complete with white tees and shiny Doc Martin boots. No more braces meant, I could finally bear my legs without feeling like some kind of freak…I would finally fit in.

1993

The bell rang for home economics class. “Shit” I mumbled under my breath as I scurried faster past the cafeteria. I was going to be late again. The halls were now empty except for a few of the ‘bad kids’ loudly and obnoxiously trailing behind me. They were the school misfits, regularly getting kicked out of class for talking back to teachers and causing chaos… and for some reason this made them even more popular. I had just turned the final corner of the Arts hallway when suddenly I noticed an abrupt and eerie silence. Instinctively, I turned my head... my heart sank. There, no less than 12 feet behind me, was the leader of the pack, Kenny, doing his best impression of my awkward gait, his groupies cupping their mouths laughing breathlessly. I went home in tears that day and told my parents that Dr. Gruber was an asshole and a liar. I needed my leg braces back.

2009

Devin...how are we supposed to get anywhere if you don’t let Mommy buckle you in? By now we were both laughing so hard, that no sound was coming from either one of us. Another 30 seconds of this and we’d both be peeing ourselves, which would have been much more acceptable for a 2 year boy in diapers than his 29 year old mother in yoga pants. We went through this sequence pretty much every time we had to go anywhere. I could rarely get a full grip on his carseat buckle which left me no choice but to assist with my mouth. This easily should have been a 10-second operation except for the fact that Devin was the most ticklish baby I had ever known. The minute my face pressed up against his belly he was squealing and pulling my hair for mercy, which would only send me bursting into laughter and him howling even louder.   

Motherhood had found me early in life. I had fallen head over heels with the first guy who had asked me out in HS and we married the summer after my graduation from the Fashion Institute of Technology. Originally, I had set my eyes on becoming a fashion designer but that dream deviated into a bachelors in Interior Design. Sometime during my senior year of high school I had realized that just because my hands were able to draw beautiful runway designs, it didn't mean they’d be able to actually sew them. Still, I had found much enjoyment and challenge in my new major. The campus was small and for the most part, accessible. I was thrilled to learn that my CMT qualified me for campus housing despite the fact I was only a 45-minute train ride from home. I’d finally be able to experience living on my own without having anyone trying to do everything for me.

2016

“You’re Helpless!! I’m out killing myself working 2 jobs and you’re home designing stickers and giving your time away like we’re fucking millionaires.” “Actually, I’m raising our kids, running half the business and the bulk of the household chores, or did you forget those small details? And, I’m volunteering for an organization that’s trying to cure my disease...not that you care to notice anyway!” “Here we go again, how about getting a real job like every other woman I know?!!” “I’ve broken it down a million times, by the time we pay for daycare, there’s not going to be anything left!” 

We went back and forth like this for years until it was clear that the marriage was going to be the end of both of us. At 36 it had become blatantly clear that the relationship had done more damage to my mind and body than my actual disease. Piece by jagged piece, we resentfully sorted through 20 years, jumbling together coloring books, bills and family photos from happier days. The forms for my upcoming SS Disability appointment sat on top of the mounting pile. My date had been set for April 17th. I felt both terrified and relieved at the same time.

2019

“I got you, babe. Stay right there, I’ll step on first and help you in, ok?” My boyfriend, Jason carefully postured himself, legs wide as he raised his long arms to form 2 human railings. I grabbed faithfully onto each, dropping down onto the black lacquered cabin as I let out an audible breath of relief. “Good job, birthday girl'' he said as I laughed and straightened out my short green summer dress. I could have fallen headfirst into that water and still, I would have come up smiling ear to ear. My eyes widened as they desperately attempted to take in the overwhelming beauty around us, sporadically bouncing from each intricate carving of the bow and across the sparkling horizon of ancient balustrades, gothic arches and marble balconies. A string of deep red celebratory pompoms danced along each side of the gondola, as we pushed off from the Venetian pier and into the warm June air. “Put your feet up here” Jason motioned, “let’s get some quick shots of your braces in this light.” I raised both legs up onto the wood platform and turned them into the setting sun for optimal framing. They had been sponsored by a German orthotics company, and part of my job, aside from attending our annual neurology conference with my colleagues, was to test and photograph them across our 10-day tour of Italy (I know, tough gig, right?) A few months back, when it was time to select a color from the massive chain of vinyl chips, I had stopped instinctively on this particular one. At first, it appeared as a dull and boring grey until, that is, you held it in direct sunlight, in which case it became an iridescent display of every color at once, brilliantly transforming my legs into some kind of magical rainbow show. I turned to Jay and said teasingly, ‘Aren’t they beautiful? He snapped one more photo and then looked up at me and said, “yes, you are.”

2020 

“Low battery” the notification startled me, instantly snapping me back into my now dim bedroom. How long had I been online? The growing sting in my eyes swiftly answered, “too long.” I closed them, rolling my heavy head from side to side until my stiff neck cracked with relief. Dozens of red dots still imprinted in my mind, each representing nearby cities and growing clusters of confirmed cases. “That’s enough for now,” I said, pushing up from the desk and reaching for the cord to my battery pack. 

I walked over to the far side of the bed where my headphones still sat from the previous night. The word “Bose” now tinted with dark hues of auburn from the window above. Outside, the yard had been covered in a fresh white blanket of snow, all except for the inground pool whose rigid lines had now been perfectly curved and softened into a small crystal pond. Not exactly the scene I had pictured for the “end of the world.”

I smoothed out the thin purple yoga mat underneath my feet, regaining my balance as I scrolled through my playlist for my go-to track and pressed loop. Spacing each foot along the edges of the mat, I placed my hands down flat, leaning into my palms as they brushed against the tips of my sneakers. All those torturous years of being stretched in PT had paid off. At 39, I was now half human, half pretzel. I’d often credit my abnormal flexibility with keeping my bones intact from my hundreds of falls. One year, I counted 62. Many times I’d laugh them off, saying things like “I don’t break, I bend” to comfort Jay and the kids.

This new storm felt heavier though. This storm was a global one, a Pandemic. I unclenched my jaw and inhaled until each crevice of my lungs were full. The sea of questions and uncertainty began to fade into the tiny bumps of the mat in front of me. My attention now focusing on my tingling fingers and the lavender letters printed above them, “Gaiam”. After years of staring at this odd word, I had only just recently learned it’s greek translation - “I am mother earth.” I exhaled as a tear dropped in between my fingers. My heart felt heavy for what was to come but also grateful for this familiar and sacred space I had found so many years ago. “The melody and lyrics began again...

Hold 

Hold on 

Hold onto me 

‘Cause I’m alittle unsteady

A little unsteady... 

More about Estela:
Instagram: @stel_lugo @embraceit_podcast @cmtwegotthis 

TEDx: https://www.youtube.com/watch?v=1MXVoLLMzBk

Hereditary Neuropathy Foundation: www.hnf-cure.org 

By Pam Saylor

 When early retirement unexpectedly became an option in 2016, my husband Dave and I dusted off our long-planned dream trip and made our plans to travel in Europe for a year, beginning in Italy.  

Like giddy kids, we bought two one-way tickets to Rome.

Despite the excitement, I almost immediately felt overwhelmed. After all, I had been a Type 1 diabetic for only three years and still had a lot to learn. How would I buy insulin and would it be affordable? Would my prescriptions in English be accepted in European pharmacies?  But excitement, anticipation and a bit of courage kept me going.

Pushing worries aside, in the fall of 2017 we left the U.S. hauling four suitcases and one beer cooler full of insulin. My carry-on suitcase was full of stockpiled insulin supplies. I had asked my endocrinologist a thousand questions and made lists of everything I thought I needed to know.

As we traveled things fell into place. I easily filled prescriptions in Rome and Croatia. Of course, there were some problems, like when the Croatian Customs office blocked my Omnipod insulin pumps from being delivered. I reluctantly went back to giving myself multiple daily insulin injections.

After Croatia, we landed in London and I was thrilled to receive a shipment of insulin pumps from my daughter so I could quit the daily injections. Early one morning I attached a Pod to my arm and we headed out for a day of exploring.  I checked my blood sugar repeatedly and all day my numbers were perfect. After we returned to our apartment that afternoon I sat on the couch to watch TV and Dave went to the bedroom to read. 

When I opened my eyes, the afternoon was gone and there was darkness outside the windows.

I must have been sleeping. Across the room, a pair of shoes was lying in the corner, but they looked wrong somehow—blurry and dim. I blinked. The shoes moved toward me and then away—then closer again before receding. The walls wobbled and looked like they were melting. My brain couldn’t think of the word “shoes.”  My head swung to the right and my husband, pale and wide-eyed, was sitting next to me on the couch. His voice shook as he described finding me on the couch—unresponsive but still breathing. Taking a test strip from my purse, he tested my blood sugar. It was only 20. 

He knew what to do. Every year we looked at the bright red plastic case holding the emergency glucagon kit after I bought a new one. When he found me unconscious on the couch, Dave knew the glucagon was the only thing that could save me. He filled the syringe and plunged the long needle into my thigh.

We were both silent as we took an Uber to the nearby hospital. I was cold and exhausted. Talking took too much effort. Thinking took too much effort. My arms and legs each weighed 100 pounds.

At the hospital, we eventually saw a doctor. He had questions. From my purse, I pulled out the Personal Diabetes Manager that operated my insulin pump and answered all of his questions. But my hands shook as I searched the PDM. I had questions too.

How did this happen?  What did I do wrong?

The doctor meant well but he didn’t have any answers to give me. Like many doctors and nurses, he didn’t understand diabetes very well. We collected a prescription for another emergency glucagon kit and took an Uber home. I lowered my pump settings and nervously went to bed.  

When I was finally able to talk to my endocrinologist she told me that I had accidentally given myself an insulin overdose and that I should have reduced my basal insulin settings on the pump for the first 24 hours after re-attaching the pump.

Before we set out on our trip I thought I had asked every question, planned every detail, limited every risk, prepared for every situation. But life isn’t entirely predictable and my best-laid plans and my carefully drafted lists couldn’t always protect me.  Life is for living—risks and all.

After my hospital experience, I was thankful. Thankful that Dave was there and knew what to do. Thankful we had not let my worry or fear keep us home. If we hadn’t gone on our year-long dream trip, if we had clung to the safety and security of home, I would have regretted it.

Pam is a retired paralegal and a contented travel addict. She wrote a book about her year of traveling to help others with diabetes who want to travel. Learn more at www.bravingtheworldbook.com.   

. 

A Nurse’s Reflection back to March 2020

This happened at the beginning. Before the tyvek suits, and the extra ICU beds. Before the empty streets howled with what we’ve all lost. When Italy served as an example of what we must not become, when we still had hope we could “flatten the curve.” Before we had all held the hands of the dying in place of their family, before every room was filled with a coughing, proned patient, before we knew what we were doing. 

In early March 2020, I was the first nurse to go into a room with a suspected Covid-19 patient. The tests were taking a week to come back at that point, we only had a few suspected patients. Since I didn’t live with family or roommates, I was the safest choice, so I was the first one in. Those first few cases were discharged without results, none of them ended up coming back positive, we were still waiting for our first confirmed case. We knew it was coming, it was only a matter of time before one of them came back positive. 

In this in-between time, I met Robert. He had been discharged from our floor less than a month before. He had a significant respiratory history: at home he lived on a constant 8L of oxygen, but it had gotten harder for him to breathe. He lived with his brother who had just attended a funeral, and some attendants had just come back positive. Robert’s brother hadn’t been feeling well, but it was Robert who ended up with us, in a room at the end of the hall, with a steadily climbing oxygen requirement. That first night he was sick, but stable. The next night I came back to find something different. We had never seen it before, but we would see this escalation again and again in the coming months. No amount of oxygen was enough. I was in that room every 10 minutes increasing his oxygen until he was on the maximum amount we could currently offer on the floor. 

Robert was very clear: he was a DNR/DNI. There would be no ICU for him, so instead he got me. While I was in his room turning up his oxygen, he told me about his years as a wedding planner, about a bride who had left her dress at the airport, about how he could spot who would make it and who wouldn’t. But when I could turn his oxygen up no further, our conversation switched. Just as he had known which couples would last and which wouldn’t, he knew what his outcome would be. He looked at me and said through his oxygen mask, “It’s okay, I’ve had a good life, I’m ready.”

I had never had this conversation before. I had only been a nurse for a year at this point. On my floor, when someone was imminently dying, they were usually not this aware. But this was a different kind of death. “Will I go tonight?” he asked. 

“I don’t know,” I responded. “We’ve never seen this before.” 

I don’t know if he saw the tears slowly rolling down my cheeks as I medicated him. If he did, he didn’t say anything. So I sat with him, monitored his medication, and held his hand while he slipped into unconsciousness. 

I work the night shift on a medical floor. I start at 7:00pm and end at 7:00am. All of this took place before midnight. I felt like I had already run a marathon. I left Robert’s room while he still breathed but no longer responded, blinded by the bright lights of the hallway. Though we didn’t have his results yet, somehow all the nurses knew: we knew we were seeing something different. 

While Robert struggled to breathe at the end of the hall, I turned to face my coworkers and other patients. “John is causing problems,” they told me. 

John was another patient of mine. He was on an involuntary psychiatric hold, and completely healthy. He had told the Emergency Department he had a cough, so they swabbed him for Covid and sent him to us. We were woefully ill-equipped to handle psych patients, especially with Covid. We had him confined to his room because he was potentially infectious. He would stand at the doorway, pacing like a caged animal, shouting abuses at the staff who monitored him for safety. 

John was desperate for a cigarette. He had been pacing his room for four days, antsy with no entertainment, no freedom, and no cigarettes. I had already been giving more nicotine gum to him than I probably should have, but it wasn’t making a dent. He alternated between screaming at staff and pleading with us. Offering us a mix of abuse and bargains, screams and apologies. My coworkers were right, he was escalating. John was leaning outside his door while the nurses' aides tried to shoo him back inside. We called security, who came up to linger in the hallways, and we called the doctors. It was decided that for everyone's safety we needed to get him sedated. I filled two syringes, one with Haldol, one with Ativan, and with one of my best friends by my side, suited up and walked into John's room. We didn’t know what we were going to get with him, so I very gently said, “John, we have some medication, it is going to calm you down, is that okay?” 

Much to my surprise, he responded, “Okay.” 

“My friend and I are going to inject you at the same time, one in each arm, okay?” 

“Okay.” 

Quick and easy, no issue, full cooperation. The doctor left, security left, I took off my protective gown, my gloves, I washed my hands, and as I was walking away, John seized his opportunity. He bolted out of his room like a drunken racehorse at the starting gate. The sedatives had started to kick in, and he wobbled his way down the halls, hooked a sharp left and sprinted haphazardly past the elevators. One of the nurse’s aids and I started after him. He wasn’t allowed to leave, and he was potentially spreading Covid with every surface he crashed into. “John,” we shouted, “please stop, come back!” 

But with a determination brewed over days of nicotine withdrawal he continued to rocket down the hallways, past the room in which Robert lay dying, and launched himself into the back stairwell. We were hot on his heels as he plummeted down four flights of stairs and shot out the doorway at the bottom, opening out into the hospital driveway. 

He had reached freedom. The cold March air invigorated him and he pressed forward, towards the main street, while the two of us trailed behind him, shouting his name. Security followed us out the door shortly thereafter and we caught up to him just as he was about to run out onto the road. I held his arm in my ungloved hand and he immediately surrendered to his recapture, allowing himself to be steered back to the main door. 

As we passed through the doors to the hospital, John looked at me, my hands bare, my face uncovered, and with such genuine remorse said, “I’m sorry.”

It took everything in me not to laugh. The whiplash between my two patients had me reeling. This contrast between intense, frenzied chaos and small, tender moments of sadness would continue throughout the rest of this pandemic for me and my coworkers. This was only the beginning, after all. 

After administering a few more sedatives, I tucked John into bed and tried to make it until morning. An hour after my shift ended, before I had even gotten a chance to leave the hospital, John’s test came back negative. He was sent to psychiatry a few hours later. Robert died later that day. He died before his results came back, but he was our official first case. First case and first death, all in one night. 

I went home with my best friend and coworker. We had a few early morning drinks and braced ourselves for the months to come, finding moments of joy and hilarity. Who would’ve expected that at the end of our first year as nurses we would find ourselves in the middle of a global pandemic, watching people gasp for life and chasing patients through the halls. 

Nell Robinson, RN, works at an urban public hospital in Massachusetts. Since March 2020, she has primarily cared for Covid-19 patients.

Nell Robinson, RN, works at an urban public hospital in Massachusetts. Since March 2020, she has primarily cared for Covid-19 patients.

The National Parks of Emotion: Mapping Our Emotional Experiences of the Pandemic

How has the experience of living through a global pandemic made you feel? How has it affected your life, your work, your relationships, and your state of mind? The National Parks of Emotion is a participatory multidisciplinary art project reflecting on our emotional experiences of the pandemic, led by photographer and community artist Mindy Stricke. 

Join the project, share your story, help people share theirs, and learn how to create abstract photographic landscapes of the National Parks of Emotion you’ve been wandering through this past year. Everyone is welcome, including teens and kids with adult supervision. You don’t need to consider yourself an artist to help build the National Parks of Emotions, you just have to be open and willing to play, take chances, and collaborate. http://www.mindystricke.com

The National Parks of Emotion Art Lab: March 18th 1-2pm EST

How has the experience of living through a global pandemic made you feel? How has it affected your life, your work, your relationships, and your state of mind? The National Parks of Emotion is a participatory multidisciplinary art project reflecting on our emotional experiences of the pandemic since it began, led by photographer and community artist Mindy Stricke.

Come to the next free live National Parks of Emotion Art Lab workshop to join the project, share your story, help people share theirs, and learn how to create abstract photographic landscapes of the National Parks of Emotion you’ve been wandering through this past year. You can also submit your story without participating in the Art Lab through Mindy’s website, or watch the Art Lab recording after the event.

Everyone is welcome, including teens and kids with adult supervision. You don’t need to consider yourself an artist to help build the National Parks of Emotions, you just have to be open and willing to play, take chances, and collaborate.

Register on Eventbrite to receive the Zoom Link.

In partnership with Inspire, Health Story Collaborative hosted a virtual Healing Story Session to celebrate —and invoke — resilience in the face of illness.  The event featured two patient advocate storytellers, Estela Lugo and Christopher Anselmo, whose lives changed when they started sharing their patient journeys.

By Chris Anselmo

Watch Chris perform his story here

Growing up in Connecticut, I was obsessed with basketball. Everyone in the state disagrees on sports allegiances between Boston and New York, but everyone is obsessed with the Uconn men’s and women’s basketball teams. I watched my first game at age 9 and was hooked.

I’d shoot hoops in the backyard pretending I was my favorite Uconn players. I played on town leagues in middle school and high school. Basketball was always on my mind. I knew I wasn’t good enough to play in college – I was 5’9 and hated playing defense – but it brought me great joy and comfort to play, even if my skills were limited.

I played basketball care-free, because I had full mobility. I could run and jump and dribble and shoot without any limitations. (Leaping was another story). In fact, limitations were not on my radar. Until I was in a car accident my senior year of high school. Then, I realized that I was not invincible. I was not indestructible.

It was because of this accident and the subsequent blood draw that I learned something was wrong inside of me. My creatine kinase, or CK, levels, which should have been only a few hundred, were in the tens of thousands. CK is a biomarker that indicates how much muscle breakdown is taking place in your body. So, a level in the tens of thousands indicated that my muscles were breaking down rapidly and at an alarming scale. But why? After ruling out internal injury, liver problems and other diagnoses, I was diagnosed with a muscle disease I was told would manifest in adulthood, called limb-girdle muscular dystrophy type 2B.

It was a strange, unsettling moment, learning you had a disease before you had symptoms. It didn’t add up with my life experience to date. I had no physical limitations. How were my muscles defective? And given that I was just about to start college, as long as I was asymptomatic, I put it out of my mind. I was 18 at the time. Part of it was denial - I didn’t believe the diagnosis was real.

In the fall of 2004, 11 months after the car accident, I started college at Northeastern University in Boston. It was a city I grew up visiting with my family, and to live here full-time was a thrill. I loved walking around the city. I would often refuse to take the subway and instead walk to and from different destinations, even if they were miles away. I had never lived in a place with so many restaurants, museums, great architecture and people from all walks of life, that I had to see it and experience it. I would hang out with my friends and go to parties and take in as many experiences as possible. I loved the accessibility of Boston, how everything was within walking distance. I wore down many pairs of sneakers walking the city. There was no indication that I had any physical restrictions. There was no indication that I was a ticking time bomb.

But then, after graduation from Northeastern, like a light switch, my symptoms started. I was going for a run one night after work and after a few minutes, my legs began to burn and I could no longer run. The rest of my body was willing to continue but my legs were having none of it. I thought it was odd but I didn’t think much of the root cause. I made excuses in my mind. I was stressed. I was an account maintenance coordinator for a large financial firm and was working long hours. It was boring work and my heart wasn’t in it. I figured I was just tired and run down from hating my job.

Deep down though, I was unsettled. I remembered the words my pediatric neurologist five years back told me – someday I would need to visit an adult muscular dystrophy clinic, and that I would start to experience weakness. Eventually. Could it be that what I expected to take place later in life would happen now?

But then, a few months later, I moved to a new apartment, a two-story walk-up in Brighton, and towards the end of move-in, carrying a desk chair up the stairs, my legs froze up and I couldn’t carry the chair anymore. I placed the chair down and pulled myself up the final two steps with the railing. Something seemed off. I woke up feeling excessively sore and sluggish. The questions in the back of my mind were now front and center. Doubt chipped away at my inner resolve. I knew that the disease was starting. There were too many coincidences for this to be pure chance. I couldn’t use work as an excuse anymore.

In November 2009, I took the advice I received five years ago and followed up with a neurologist at Beth Israel Deaconess Medical Center in Boston who confirmed my diagnosis. I was shocked, even though I knew deep down that I had the disease. For five years, since the accident, I was operating under the false assumption that this disease would hit later in life. To realize that it was happening now, and that it would be severe enough to land me in a wheelchair, was too much to bear. I left that day in a state of shock. I sat down on the bench outside the waiting room, and stared blankly out the window. The late afternoon sun shone brightly into the window. I looked into the sun not caring if it blinded me. I was crushed.

As the years passed, the symptoms progressed. A year later, in 2011, I was walking up the hilly part of Washington Street in Brighton, intending to pick up some toothpaste at CVS. As the ground flattened out at the top of the hill, my right knee spasmed and gave out. I was embarrassed and scared. To collapse under the weight of my own body was an unsettling feeling. In the subsequent few months, falls happened over and over, at home by myself and in public in front of dozens of people. A year after that, I fell on my way home from work and couldn’t pick myself up on my own. I pulled on a nearby fence to get to a standing position, almost causing the wood to break in the process.

I realized I needed an assistive device – crutches and leg braces. I needed something because I could not go on like this falling every other day, and expending all my energy to get up or relying on complete strangers to do so.

That’s when it really hit home. I became depressed and turned down social events, afraid to go somewhere where I might fall in public. I was very sensitive to how I walked, on my heels, and how my gait was slowing down. I noticed that when I got on the bus to go home, I had to hold onto the railing to propel myself up, since taking a step unassisted was getting too difficult. I felt like I was carrying a 30-pound weight everywhere.

The depression – a disinterest in things that used to interest me, fatigue, constant headaches - got worse when I started to notice separation between my friends’ lives and my own. They were getting married, buying houses, getting a dog, eventually having children. I had none of those things, but was consumed by the state of my body. I was on a downward spiral.  If I found life to be too difficult, where would that leave me? What was the end game? I struggled to think about it. I struggled to think about anything. Many times I found myself reclining in my desk chair, staring out my window, usually snowing or raining, contemplating life. This wasn’t how I saw my post-collegiate life going.

But I knew, difficult as it was, that this downward spiral either would have a terrible ending, or I would find a way to turn it around. In order to do the latter, however, I had to change my mind and refocus. I thought about my goals, and how they were sitting on the backburner, unfulfilled.

On a snowy Saturday in 2013, I wrote down my goals, and forced myself to find a way to make them work. I realized, although difficult, many of my goals were achievable.

One such goal was to go to business school. I had contemplated business school for many years. Every year I would consider going, but talked myself out of it. I was too weak, I thought. I felt like it was no longer possible. But this time, I forced myself to do it. I took the GMAT exam and scored well enough to get into several Boston-area schools. In 2014, I quit my job and enrolled at Boston College’s fulltime MBA program. It was a huge risk – no income coming in, taking on loads of debt, taking a full slate of classes, moving to a new apartment in a new town. But it was a risk I wanted to take. It was time to see what I was made of.

I attended Boston College from 2014 to 2016. It was a transformative experience. I met dozens of lifelong friends who I continue to talk to to this day. When I started the program, I worried how I would be perceived. Would I make any friends? Would I be prevented from going to social events either because I wasn’t invited or because the venue was inaccessible? Would I be able to handle the rigors of early morning classes, tests, finding an internship, etc.? And if I struggled to make friends, would I quit and drop out?

At first, I thought that answer was yes, that my disease would be a barrier. During orientation, we paired off with the person next to us to practice case interviews. Somehow, I found myself alone. I couldn’t easily get out of the auditorium’s flip chair, so I stayed put, content to practice alone. I felt the isolation of my condition and how different I was.

Then, as if someone was reading my mind, someone plopped down in the seat behind me and stuck out their hand. I turned around, it was a man, about my age, in glasses and a suit without a tie. He saw I was alone and wanted to be my partner. Brian, as it turned out his name was, would become one of my best friends in the program. We continue to stay in touch til this day.

Over the coming weeks and months, I met more and more of my classmates, and felt comfortable opening up to them about my condition. My classmates, once I disclosed bit by bit that I had a progressive neuromuscular disease, were accepting. They looked out for me. They soon would give me rides, carry my backpack, and in several instances, pick me up off the ground after a spill. They became friends. They became family.

School wasn’t bad, either. I learned a lot about business (although never quite mastered accounting), and spent a summer in New York City interning at Pfizer. I never thought I would get to live in New York. I rebuilt a lot of the confidence I had lost over the years, once I saw that I could do something as difficult as business school.

Those two years taught me a lot about myself, and about life. Although my condition has deteriorated significantly, and I am now a full-time wheelchair user, I feel like more is possible than ever before. I like to do public speaking and have given talks and been on panels at several conferences. I have written a blog for the last three years and have been published in several publications. I am writing a book. The job I have now, working for the Muscular Dystrophy Association in a partnership management role, is one that I love. The world is at my fingertips, although it takes more effort, planning, and logistics than before. But all is still possible.

One such example is conferences. In order to attend an industry conference (back when we had in-person conferences), I have to plan out the logistics to a T. I need to find an accessible room that has the right dimensions for my wheelchair and my care. I need to make sure I have help, usually in the form of my parents, to help me. Then there’s getting there, which usually involves a long car trip, and staying at hotels along the route if the location is far. It’s tiring to plan out all the logistics, and even then, there are bumps in the road. But on the other hand, I wouldn’t be going to the conference in the first place if I hadn’t taken this path. It’s a double-edged sword of sorts.

It hasn’t been an easy road. I am still nostalgic for simpler days when I could move around easier, and didn’t have to worry about falling. I miss shooting and dribbling a basketball. I miss spontaneity and going places on a whim. But it has been a learning experience. I take solace in connecting with others who are just starting out on their disease journeys. I have experienced a lot of missteps on my journey that I hope to share with others, so that they may avoid making the same mistakes. How to handle it mentally, how to seek out help, that sort of thing. I hope to share with others that the best way to fight a life-changing disease is to fight it head on, rather than retreat in denial.

Chris Anselmo is a Market Intelligence Manager at the Muscular Dystrophy Association. He is a patient advocate who is passionate about raising awareness for rare diseases, educating healthcare stakeholders on the power of the patient experience, and helping anyone dealing with adversity — especially newly diagnosed patients navigating the ups and downs of a life-changing diagnosis. He lives with Limb-Girdle Muscular Dystrophy type 2B, which has affected him for the last twelve years. 

By Rene Morales

In February 2018, two days after my fiftieth birthday, I began to feel a tingling and burning sensation on the right side of my forehead. Over the next few days, the tingling grew into electric shocks whenever I touched that area of my face. Concerned, I saw my doctor who immediately sent me to radiology for an MRI of my brain. Two days later, my doctor informed me of the results of the MRI: Trigeminal Neuralgia, a rare and chronic pain condition. My Trigeminal Nerve is in contact with an artery and carries sensation from my face to my brain. The pain associated with this disorder is considered by many to be the worst pain a human can endure. In the past, it was commonly referred to as the “Suicide Disease” because the intense pain and resulting high rates of depression lead many to end their lives.

Upon this diagnosis, I quickly became depressed and isolated myself away from my family. My wife and children watched helplessly as I suffered. I perceived their looks as pity which caused me to feel weak, a false reality I created in my head.

Already struggling with anxiety and negative thinking, I battled with the thoughts now racing through my mind. How would I get through this? What would this do to my marriage? Now filled with fear, I envisioned only agonizing pain and loneliness. I questioned if I would ever find comfort from anyone or anything again, leading me to worst-case scenarios where I would ultimately want to end my life. Unable to accept my new normal, I entered the stages of grief due to the loss of the person I once was, skipping over denial and straight to anger and depression. 

The terrible pain of this disorder was like an electrical storm raging through my head. Ominous clouds rolling in, hurricane-force winds causing mass destruction, sideways rain and powerful bolts of lightning reverberating within my head and shooting down my body whenever I spoke, touched my forehead, brushed my teeth, showered, or even smiled.

 I became concerned for my future. I thought I would no longer be able to work, support my family, and I would ultimately become a burden to those I loved. I began to lose hope. Each painful shock made me angrier. I turned to food and alcohol for comfort and gained over twenty pounds in two months. Whenever possible, I retreated to my bedroom and began a life of isolation, rarely coming out to engage with anyone. As the days turned into weeks and weeks turned to months, I became more of a roommate than a husband to the love of my life.  My negative reactions to the disorder drove me deeper into depression, severely affecting my marriage and my mental health. My wife struggled with how to deal with me. She quit her well-paid position at a local hospital to start her own private practice as a mental health counselor so she could care for me and ensure I had the support I needed. She did everything she could to be there for me, but rather than accept her influences, I wallowed in self-pity and allowed my situation to get the better of me regardless of her actions.  

My negative responses placed a wedge between my family and me. After months of isolation and self-destructive behavior, my relationship with my wife was severely strained. We were both unhappy with the person I had become and I was adrift in a sea of depression. It was at that low point that I realized I no longer wanted the life I had created. Something had to change. I had to choose to either sink further into the abyss of depression or pull myself out and find my way back to who I was prior to my diagnosis. In order to bring myself back to life, I had to focus on positive thinking and radical acceptance of my situation. While I did not have to like my situation, I had to accept that I had this disorder and find ways to live my best life regardless of my situation. I began to change my outlook on life. Instead of feeling sorry for myself, I found peace in the knowledge that my situation could be so much worse than it was. Rather than being diagnosed with Trigeminal Neuralgia, I could have been diagnosed with inoperable stage four cancer and had only months to live. I needed to adopt a better perspective, embrace all the positive aspects in my life such as the love and support offered by my family. Lastly, I had to come to terms with my diagnosis, and not view it as the end of life as I knew it. 

One of the first steps I took towards recovery was to learn and understand everything I could about Trigeminal Neuralgia, including treatments, both traditional and non-traditional. I was prescribed several medications, all of which caused terrible side effects such as dizziness, fatigue, nausea, muscle pain, and stuttering. Due to these side effects, I began to experiment with cannabidiol (CBD) oil, a product derived from cannabis and hemp, which was used as an anti-seizure medication and a neuroprotective. The first form of CBD I tried was a paste derived from cannabis that tasted terrible. After several months without relief, I moved onto CBD oil derived from hemp. This CBD oil was infused with coconut oil and naturally flavored with orange peel. It tasted tropical and sweet and a thousand times better than the cannabis-based paste. Within two weeks of starting this treatment I was having fewer episodes, and the pain was less severe. Within two months, I no longer had episodes of pain and began to feel like myself prior to the diagnosis. I was overjoyed by this discovery and believed I had turned an important corner regarding treatment.

 Now pain free, I promised myself to make time for the things I always wanted to do but never did. I had been given a second chance at life, and I had to make the most of this opportunity. I resumed the activities I loved such as competitive storytelling and singing karaoke and no longer took for granted the simple pleasures of smiling or having a good laugh. I savored each day believing that perhaps I was cured or possibly misdiagnosed; however, I soon discovered the reason the pain had subsided was due to a period of remission, not from any method of treatment.

During this six-month period of remission, my neurologist informed me that some people experience remission ranging from a month to two years. There is no explanation for why these periods of remission happen or what triggers the return. Navigating through these ups and downs is extremely challenging, because each time the pain returns, I am affected differently; the pain is either more intense or it affects a different part of my face. In addition to struggling with this intense pain, the mental struggle of facing the reality that my much-enjoyed break from the disorder has ended crushes my hopes for a sustained period of relief.

 I am very open regarding my struggle with Trigeminal Neuralgia, and have shared my perspectives through a variety of platforms. I’m often asked how I manage my life with such uncertainty and pain. The only words that come to mind are “You just have to.” While I never chose to have this disorder, how I react to it and how I choose to live my life are up to me. It took years for me to get to where I am, and if I can offer any advice it would be this: radically accept your situation and do not allow your illness to take away your very soul and everything that makes you who you are. In the two and a half years since my diagnosis, I have learned a lot about myself. I have endured the darkest pits of depression and savored the highest heights of personal and professional achievement. I have become closer to my family and learned the value of time, relationships, and self-acceptance. I did not learn these lessons on my own. I know that the life I have today would not be possible without the loving support of my wife, children, friends, and co-workers.

 I still have days where I struggle -- days filled with extreme pain and constant concern for my future. I’ve learned to accept those bad days and allow myself that time because no one is perfect. I give myself those moments, and when I’m done, I pick myself up, dust myself off, and do what I need to do to see myself through the days, weeks, and months that stand before me. In doing so, I believe I set a positive example for others. I show that one can thrive while living with an incurable and painful disorder, and that being diagnosed with such a condition is not the end of the world. My life is challenging and filled with uncertainty, but that has not stopped me from being who I am and growing into who I want to be.

Rene Morales is a retired Coast Guard Chief Warrant Officer currently working for the Washington State Department of Veterans Affairs. When he isn't busy serving those who served, he spends his time writing short stories, is a competitive storyteller and musician.

Rene is one of twenty individuals featured in the upcoming documentary film Unfixed by Kimberly Warner. Unfixed follows these individuals that are in various stages of learning to thrive with extreme, chronic, incurable conditions. You can learn more about Unfixed at www.unfixedfilm.com.

By Melissa Baresel

My daughter was 31 the last time I held her hand, in the front room of a funeral home.
She was 31 the last times I kissed her and told her I love her.
I held her hand for almost 2 hours.  I apologized to her.
I told her that I miss her terribly, and that my life would never be the same.
She was my first child.
She was the child who made me a mother.
She was the one who taught me both the incredible joy and the unbearable pain of being a mother.

My daughter was 31 when she got married to a man I met in the emergency room when he texted me that she was gone.
She had been married to that man for 11 days.

My daughter will never be 32.
She will never watch her own daughters graduate, or marry, or have their own daughters (or sons).
She will never hold her own grandchildren.
I studied her face as I held her hand.  The funeral director was kind enough to have painted her nails (she would have appreciated that).  I looked for anything that might make this all just a terrible mistake.....but it wasn't. 
I wondered what I could have done to have changed her outcome.
Our outcome....this intense, incredible, and indescribable pain.
Her death.
And now I am searching for a way to not feel like a victim of her choice.
Not to feel helpless.
I need to find a way to be okay, because I'm not.
I am lost.
I am broken.
Because she was lost
She was broken.
It is too late to fix her.
I need to find a way to help fix someone else.
I am trying to find my voice.
I am trying to ease my pain.