By Val Walker

Could anything make you feel lonelier than having no one to take you home after a medical procedure? Before the day of the procedure, single older adults scramble to find a ride for their colonoscopy or endoscopy, asking friends, neighbors, family members, colleagues, church members—you essentially go begging—but no one can be pinned down to pick you up. These days, medical centers have moved as much of their services to outpatient procedures and day surgeries where patients are moved through the pipes like an assembly line. So, they expect their patients to have a trusted ride at the ready to sign off so they can whisk you through and release you to someone “responsible.” This is especially tricky when a patient has anesthesia and cannot simply take an Uber or hire a ride service, or use public transportation, or use the volunteer ride services that senior centers offer.

For single older adults like me, I had to reschedule my endoscopy four times because my friend or neighbor or chosen ride fell through at the last minute. I was given hurried, dismissive advice by my medical center to just call my local senior center or call a medical transport service. Sometimes these services had been discontinued, or did not qualify, or cost more than $300 for a ride. There is a pervasive misconception that any older adult can simply call their local senior center or grab a volunteer from church for a ride to a medical appointment. But I told everyone who so casually handed me lists of ride services that a procedure involving anesthesia in an outpatient facility would not accept a driver from any organization due to liability concerns.

Some of us stranded seniors who’ve fallen through these cracks have flat out given up on bothering to get ourselves the care we need.

This flakiness and chaos with finding reliable rides caused my biopsy to be delayed for four months. I was feeling more and more frustrated and worried, but far worse, I was falling into a pit of feeling lonelier, downright abandoned (does anyone give a rat’s ass?) that no one could keep their commitment or go out of their way to help me get that long-overdue biopsy. Did my friends or anyone care that abnormal cells were already growing in those membranes? I already had thyroid cancer four years ago and I sorely needed this next biopsy for my Barrett’s esophagus and abnormal cell changes in the membranes of my throat. But I could find no one, after a good 60 attempts to find people for a ride. Sure, I was “well-connected,” but could I count on anyone? Finally, I resorted to scheduling a home health agency and having to pay $120 just for a ride home (and that’s pretty cheap these days). Paying for this certainly meant I had to go without other basic needs (had to use the food pantry).

Not only is this predicament unfair financially and medically for isolated adults who are forced to delay important, perhaps life-saving procedures—it hurts us most in our hearts and makes us feel uncared for and unloved. Yes, I am being emotional here, but I believe most of my fellow solo agers out there on their own fighting for basic health care feel just as lonely and abandoned. And to tell the truth, I’m sure I’m not the only one who was haunted by an inner demon nagging at them saying, “So who cares if these cells turn into cancer—maybe it’s time to get out of Dodge.”

And yet, with just a little more help from those friends around us, an early cancer can be spotted by one single act of kindness—a ride home from an endoscopy.

So, I’ve said it: Our health care system can make solo agers feel even lonelier when left to their own devices to scrounge up someone to drive them home from an overdue biopsy. And if we cannot find anyone available or willing without having to pay for them to help us, our sense of isolation and abandonment might weaken our will to keep fighting—and our will to live.

That’s what social isolation really means. That’s one way it can kill us. What do you think?

Val Walker is a contributing blogger for Psychology Today and the author of 400 Friends and No One to Call, released in 2020 with Central Recovery Press. Her first book, The Art of Comforting (Penguin/Random House, 2010), won the Nautilus Book award and was recommended by the Boston Public Health Commission as a guide for families impacted by the Boston Marathon Bombing. Val received her MS in rehabilitation counseling from Virginia Commonwealth University and is a rehabilitation consultant, speaker, and educator. Her articles and Q&As have appeared in AARP, Caregiver Space, Babyboomer.com, Caregiver Solutions, Time, Good Housekeeping, Coping with Cancer, Boston Globe Magazine, Belief Net, Marie Claire, and Sweety High. Keep up with Val at www.ValWalkerAuthor.com

By Rebecca Fogg

It all started so early that I didn’t question it–my body yelling that something was terribly wrong with me or my life, even when it wasn’t. A chest cramp and wave of chills as a child, when I fibbed to a babysitter about my bedtime and got away with it. Spontaneous sobbing fits so immersive as a teenager that, driving myself to school, I had to pull off the road because I couldn’t see. Vigilance in romantic relationships as a young adult, analyzing every moment of tension for a partner’s potential indifference or disrespect (which would feel dangerous) as if scanning for cancer. Gut-knotting anxiety in business on the few occasions I met a no-win political situation but felt as though my whole future depended on mastering it.

I never spoke to my parents about my youthful somatic suffering, or to close friends later on. Why would you mention that you breathed air, or put one foot in front of the other to walk? If it was in my nature, then nobody could do anything about it. If it wasn’t, then it was my problem to solve. I could still experience the thrills of love, joy, learning, helping, and achieving, and frequently did. But they often felt snatched, like luxury items I’d smuggled past a dozing guard who’d awake at any moment and chase after me. Finally, in my early thirties, some especially observant friends nudged me toward therapy, and I learned to recognize and challenge distorted thoughts that caused me pain. Life improved significantly.

Then in 2006, my right (dominant) hand was partially amputated in a midnight explosion in my Brooklyn apartment, where I lived alone. Eight tendons, an artery, and the main nerve of the hand were severed, requiring extensive surgical repair at Bellevue Hospital in Manhattan. Afterward, doctors couldn’t tell me how useful my repaired hand would be, because so much could still go wrong in the healing process. Exhausted, disabled, in pain, and mentally muddled by pain medication, I couldn’t manage self-care, house care, and a mountain of accident-related paperwork myself; so my family stepped in for a few weeks, then an army of friends took over until the worst was behind me.

I was deeply grateful for, and cheered by, the love and assistance I received. But I also felt profoundly lonely, alienated from my self and life, and grief-stricken by unnamable loss. My trauma expressed itself in spontaneous sobbing fits, violent dreams, and intrusive thoughts about the September 11th terrorist attacks (which I’d also survived, as I worked just across the street from Ground Zero). Ultimately, physical recovery required three months out of work, several hundred hours of occupational therapy, and 45 hospital visits that year. I muscled through it by continuing with psychotherapy, speaking regularly to loved ones, and studying the science of trauma and healing, which intrigued and inspired me and gave me a sense of purpose and progress. By the one-year anniversary of the accident, I had returned to the exact same life I’d been living before it and thought I had moved beyond the trauma. I felt (and still feel) changed for the better–closer to loved ones, more empathetic and ambitious for social impact; and the experience brought two new passions into my life: writing and science. My therapist and I decided our work together was finished.

Over a decade later, I began writing a book about my injury and recovery, and the science behind it–from the brain’s fight-flight program (which enabled me to rescue myself) and the evolution of reconstructive surgery over thousands of years of war; to peripheral nerve regeneration and neuroplasticity, which made my extensively-repaired hand useful again. I titled the book Beautiful Trauma, to reflect the unexpected coexistence of the wonderful, and the terrible, in my experience.

Living alone in 2020-21, as I had been at the time of the accident, I wrote in isolation for hundreds of days while COVID locked down the planet, and the US burned with racial injustice and political corruption. Increasingly, waves of irritation, grief, and despair left me gasping for relief, and I considered this span of time a fresh trauma, symptoms of which would surely abate when the pandemic did. But when they continued to flare occasionally even a year after the last COVID restrictions were lifted, it finally occurred to me that I might still have accident-related trauma to process. So after some time seeking the right practitioner, I recently began a course of EMDR (Eye Movement Desensitization and Reprocessing) therapy, which I’d learned about through my book research.

The effects so far have been remarkable. The process has surfaced questions I’ve never contemplated before; and these, in turn, have prompted insights about how old family crises, my accident experience, and my depression/anxiety might be connected–insights that I don’t believe I could have arrived at through any other means. Processing these in the safety of the sessions, I’ve tapped wells of anguish I didn’t know I harbored. Outside the sessions I feel an old vigilance relaxing, surrendering intellectual and emotional bandwidth that I hope I can redirect toward accepting what I can’t change, and pursuing what will enrich my life and that of others. I know that EMDR won’t eradicate stress and sorrow from my life. But based on my experience of it so far, I believe it will help me live with more ease and optimism, as talk therapy did before it.

I find it astonishing that I didn’t consider pursuing trauma-focused therapy until I’d lived almost 20 years post-accident and written a whole book on trauma. But then, trauma weaves itself into one’s full-body experience in subtle ways that can be difficult to recognize, or may only be visible over time as patterns of suffering emerge. I also needed to sit with my new research knowledge for a while before understanding that I could be suffering the effects of trauma despite not meeting the precise clinical criteria for PTSD and that EMDR wasn’t just for soldiers.

And, I suspect that the way we talk about psychological resilience as a society also plays a role. It’s often characterized as a linear, time-bound process; and admired, almost as if it were the product of good character, rather than of innumerable, interacting bio-psycho-social factors, many beyond our knowledge or control. As such, you work hard at recovery, you progressively improve, you finally “get over” the trauma–and you’re a hero! Who wouldn’t want to live that story arc? I needed to believe it in the months following the accident, while I exhausted myself every day, physically and psychologically, grappling with the challenges of my upsetting “new normal.” But months later, as I regained health and hand function, and thrived otherwise as well, the powerful narrative may have distracted me from psychological healing yet to do.

What is resilience, then, if not getting “over” or “past” life’s most painful experiences? I see it as a life-long process of learning to live with energy and optimism, despite intimate knowledge of our fragility and mortality. It can be grueling work, requiring substantial social and professional support to which I’d wish everyone adequate access. But it offers freedom from the depleting pain of resisting the human condition and the lost opportunity that results from not seeing the facts of our lives as they are. And there can be beauty in it–like the compassion of helpers, the wisdom we gain through coping that we pass on to others, the doors opened to new experiences and relationships to be cherished. Resilience is being alive.

In 2008, Rebecca Fogg walked away from her New York life and successful career in financial services to move to London, where she co-founded the Institute of Pre-Hospital Care at London’s Air Ambulance and continues to work, write, and learn Scottish fiddle. A graduate of Yale University and The Harvard Business School, she spent five years (2014-2019) researching and writing about healthcare with renowned Harvard Professor Clayton Christensen, author of The Theory of Disruptive Innovation. BEAUTIFUL TRAUMA: An Explosion, an Obsession, and a New Leases on Life (Avery, Penguin Random House), is Fogg’s first book. It was awarded the 1029 Royal Society of Literature Giles St. Aubyn Judge’s Special Commendation for work in progress.

By Katharine Greener-Hage

I was born in Calcutta, India, where I was born with a rare form of Congenital Muscular Dystrophy called Rigid Spine Muscular Dystrophy, which is a non-progressive form of muscular dystrophy. When I was 3 months old, I was adopted and moved to the United States. I was not officially given my diagnosis until middle school, after having scoliosis. From there I went to see several specialists at John Hopkins in Baltimore and had two muscle biopsies. I also had to start wearing leg braces, a back brace at night for some period of time, and to go on bipap at night. All of these changes occurred during middle school, which made it especially challenging to go to many doctors and know I was different from others around me. It has been hard for others to understand that I will never be able to be fully independent or to do all the physical things that my friends and family members can do. But I always believed that I should still stay positive and appreciate what gifts and talents I do have.

My specialists at John Hopkins are knowledgeable and caring doctors who have continued to see me from youth to adulthood for monitoring and checkups. They are always there for advice or assistance by email or phone for any non-emergency questions, which has been especially helpful during COVID-19 since I am at higher risk due to my pulmonary/breathing issues due to my congenital muscular dystrophy. If I got even a mild case of COVID, we don’t know if my respiratory lungs would handle it okay without going into the hospital. We just don’t know how many risks I should take now. My doctors cannot answer all of my questions or decisions.

Growing up with Congenital Muscular Dystrophy has had a big effect on the way I emotionally and physically think about myself, and on how others often look upon me. I know by having this diagnosis I will always be different from most able-bodied people around me, and it’s hard at times to accept that. I do try stay positive and do the best to live my life and remember there are others out there dealing and living with other illnesses.

I have tried to stay positive and resilient, even though during COVID it has been hard for me to have stay home most of the time. It is hard for me hearing and seeing other people getting to go back to traveling, shopping, eating out etc. when I still have to be restricted to staying at home. But I have continued to keep in touch with friends, make art work and cards for others, do puzzles, watch sports and movies, spend time with my cat, and listen to music.

Even though I have muscular dystrophy I still am a smart, educated person and a hard worker who overcame several struggles growing up but was able to graduate from college with two BS degrees. I became fluent in ASL, living with my sister who is Deaf. But my muscular dystrophy has changed some of the goals and passions I wanted or would do if I did not have it, like living independently on my own, driving, having a full-time job, playing sports, and having kids. I discovered that full-time work was too hard for me to continue, but hope to find work in the future that is right for me.

Having muscular dystrophy has made it harder to be in relationship, connect with peers, and maintain friendships. I have not really dated or met the right person yet. I have some close friends that I can do activities with, but since I don’t drive and they work full-time jobs I can’t always see them, and with Covid-19 have to still be home, too. I was hoping to be married or living with a roommate by now, and not still with my family all the time. One of the hardest things about having muscular dystrophy is knowing I won’t ever be fully independent like my friends and family.

Spirituality has played a significant role in my life. As a sick infant born in India, I was baptized in the hospital because my parents did not know if I would live. I have attended church my whole life and Christian schooling with religion classes and youth activities and retreats. I like listening to Christian music and have attended some music events. I have a Minister who has been coming weekly in person or by phone to talk or just listen in times of need, another person I can talk to who is not a family member. I find it helpful when facing family issues or stressful times. I also have had pastors and friends visit me when I was hospitalized. Listening to Christian music makes me feel better on hard or lonely days. Sharing the word of God with my close friends is also comforting, adding to the good friendships in my life.

One of my fondest memories is from when I was a Muscular Dystrophy Ambassador at several events before Covid-19, such as a special dinner and silent auction in Maryland. I hope to continue to be a disability mentor or ambassador and share my story with others in the future.

In facing my muscular dystrophy, I have learned how important it is to me to show others that I am strong, positive, and important just like everyone else is, and stand up for myself. In sharing my experiences with others, I hope they might get a better understanding what it is like living with an illness.

Katharine Greener-Hage was born in Calcutta, India and adopted when she was 3-months-old. She was born with a rare form of Congenital Muscular Dystrophy (CMD), which is a physical disability that affects her stamina (walking and standing), strength, lung capacity and breathing. She currently lives in Maryland.

By Kate Breck

It's 2AM and I’m up for the third time since finally passing out at midnight. My spine, hips and arms are on fire and feel like they are in a vice. The muscle relaxer I took to put me to sleep can only do so much. I have severe chronic pain due to three autoimmune disorders. Mornings are the worst, as it is exceedingly difficult to move due to the pain, stiffness and never-ending fatigue, but I push through as I rush to get my daughter and myself ready for the day. As I struggle to get ready; every little movement brings more pain and by the time we are ready to go, I am wanting to get right back into bed. Some days I do not think I can continue moving, and I want to give up on life entirely. These are the moments when I remind myself that I am happier now, than I’ve ever been before. While the pain is near intolerable, it’s nothing compared to the pain I experienced throughout my childhood. 

Growing up as a little girl, I spent my entire adolescence wishing for one thing: a happy family. The kind that doesn’t hit, scream, or demean. The kind of family that doesn’t make you instantly cry as you step off the school bus because you know what hellish nightmare awaits you. I had given up hope at a young age that I would ever attain this dream. The endless cycle of abuse was bound to continue. I was certain I wasn’t going to make it to 18, anyway. I had no plan for adulthood, because why plan for something you will never obtain? 

I was wrong. Not only did I end up making it to 18, but I created an escape plan. I worked 60 hours a week cleaning vacation homes, mansions, camps, basically any building I could find, because that was all I was qualified to do. Every day while scrubbing toilets, I would dream about no longer having to clean 14 houses in 12 hours. I wanted a desk job more than anything.  

One day, one of my clients took a chance on me and gave me my first office job. This position led to another job, which eventually got me into healthcare, which I was always interested in. Those years I walked two miles to and from work, rarely had anything in the fridge, and even went some winters without heat, but at least I didn’t have to break my back and hands cleaning houses anymore. Even then I struggled to find myself and still didn’t value my life. 
 
When I was 21, I met a guy. He had the same sick sense of humor as I did, and – little did I know – he was battling his own inner demons. The first time we spoke, it felt like I had known him all my life. Still, I told myself there was no way I was going to be in a relationship. I wasn’t wired for that, and it wasn’t worth the pain. He had similar thoughts, and we decided it was best that way. 
 
Again, I was dead wrong. Our relationship was off before either of us knew what was happening. In the back of my mind, I asked: how I could allow myself to trust someone like this? What was I doing? I’m not supposed to get married or have children. I don’t know how to have a healthy relationship, let alone raise another human being. I’m not even remotely equipped…but why can’t I picture myself without him? Why did he have to ruin my plans of eternal solitude where I would never again have to rely on someone else or allow them to let me down? Against my own judgement, I decided to take a chance on him, and myself. A couple of rough years passed, and we got married. One year later, our daughter was born. 
 
Finally, for once, I was right. We struggled as young couples do, but we also were two kids with a lot of trauma that was never unpacked – a recipe for disaster. We worked opposite shifts for many years so that one of us would always be home with our daughter, which meant we were barely making it mentally and financially. Shortly after having our daughter, I was in severe pain constantly and extremely fatigued. Every joint, bone and muscle in my body hurt in a way I hadn’t ever known was possible. I honestly thought I was dying.  

Starting when I was 25, I saw many doctors and had so many tests done with no explanation. I was 29 when I was finally diagnosed with an autoimmune disease seronegative rheumatoid arthritis which ended up turning more into a psoriatic arthritis diagnosis. Most recently, lupus has been considered as well.

I believe these autoimmune diseases came to be partly because of genetics but also due to the traumas I faced at a young age. There has been research that childhood trauma can be a trigger for many people with autoimmune diseases, and as a parent this scares me. I can’t stop genetics from passing these diseases to my daughter. Every time she loses balance or has a pain in her legs or arms my heart drops and I instantly picture her going through the same struggles I face. The one thing I can do, is to make sure she doesn't face the same struggles I faced as a child. My husband and I give her the safe home and stable household that we never had. If my diseases have taught me anything; it’s how important love and stability are. 

Since my diagnosis, I’ve had about 15 orthopedic surgeries, hundreds of infusions, injections, staph infections, influenza several times that almost killed me, shingles, Covid-19, and countless other ailments due to being on immunosuppressants. As if that wasn’t enough, my husband has his own health struggles physically and mentally, and so does our daughter. 

Throughout all of this, we somehow worked our way up at both of our jobs and on my 34th birthday in 2020 we finally did something we had been actively trying to do and dreaming about the past decade. We purchased not only a house, but our DREAM house. It’s been over a year now since we moved in, yet we still find ourselves waking up almost every day and asking each other if this is a dream. How did two once lost souls get here? Perseverance? Stubbornness? Luck? I’m sure there are plenty of people that wouldn’t understand how something as basic as a house and a functional family could be considered “making it”, but for us it is everything. 

I’m still not sure how nearly 14 years have gone by since that day two dysfunctional souls met, but I constantly think about how much everything would be different if neither of us took a chance on life. I truly believe we could have easily ended up dead or in prison. Even worse, I’m afraid we even could have repeated our families’ mistakes and continued the cycle of abuse and neglect. The odds have always been against us, individually and together, but I’m grateful to be able to say that my wish came true. I broke the cycle and I now have that happy family I once wished for so long ago as a little girl, and I will never take them or my life for granted again. My declining health and the relentless progression of these diseases cannot keep me down, because my dreams have already come true. 

Kate Breck is a surgical coordinator and has worked in healthcare for nearly 15 years. She is a mom of one and enjoys running in 5Ks yearly, particularly "the Dempsey Challenge" founded by Patrick Dempsey in Lewiston, Maine. Read more from Kate on her blog.

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

Facebook

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.

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. 

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 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.

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.

Health Story Collaborative · Tara on Recovery

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

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

Interview by Annie Robinson

Audio editing by Annie Robinson and Winslow Ferris

Robert Burns

 Carolyne slumped back in her wheelchair.

“I’m shitty,” she said.

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

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

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

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

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

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

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

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

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

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

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

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

Note: Patient names have been changed.

A Conversation with Julie Norstrand, PhD, MSW, MSc

 INTRODUCTION

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

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

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

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

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

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

My Conversation with Julie

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

MORE ABOUT JULIE NORSTRAND

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

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

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

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

Peer-Reviewed Publications

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

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

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

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

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

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

By Steve Buechler

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

 My Cancer Odyssey

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

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

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

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

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

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

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

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

My Coping Strategies 

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

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

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

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

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

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

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

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

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

Coping Strategies Redux 

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

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

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

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

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

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

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

Further Lessons for a COVID-19 World

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

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

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

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

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

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

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

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

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

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

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

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

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

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