Harnessing The Healing Power of Stories

 

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Harnessing the healing power of stories...

Sidewalk Lessons

By Chris Anselmo

 

 

I’m sure you’ve heard the saying, “It’s not how many times you fall that matters; it’s how many times you get back up.”

 

It’s a great message, but to me, at least in my circumstances, it doesn’t tell the whole story. Don’t get me wrong, getting up from a fall, whether physical or emotional, is incredibly important. Learning to pick yourself back up is a valuable skill, and is representative of a special type of grit and determination that’s needed to get through the realities of life. But there’s more to it.

 

As someone who is well-versed in falling after nine years living with Miyoshi Myopathy, an adult-onset form of muscular dystrophy, I’ve become an expert on the subject, for better or worse. I’ve fallen all sorts of ways – I’ve tripped on cobblestone sidewalks, I’ve stumbled getting off a bus, and I’ve been knocked over by oblivious strangers engrossed in their iPhones. I’ve even fallen over after sneezing. Even with the greatest of precautions, it doesn’t take much to fall, especially now that I’m nine years into this disease, a physical shell of my former self.

 

As a serial faller, it often feels like the famous saying has been turned around on me: It’s not how many times you pick yourself back up, it’s how many more times you’re going to fall now that you are upright again.

 

Falling, as you can imagine, is no fun. It’s not something I’ll ever quite get used to. But thankfully, so far, I’ve gotten back up every time, although in the last few years I’ve needed the help of others to do so. Assistance or not, there is pride in getting up after a fall, dusting myself off, and continuing on with life.

 

However, it isn’t from the act of getting back up where I’ve learned life’s most important lessons; it’s on the ground post-fall. It is here –on the cold, miserable pavement, or the hard wooden floor, or the cushiony carpeting (oh look, the Cheerio from yesterday’s breakfast), where I’ve had to confront the sobering realities of my life, mainly, that my disease isn’t going to get better anytime soon, if ever. Lying on the ground, unsure how I’m going to get back up, is terrifying. Every time it happens, my body trembles, my heart races uncontrollably. I often feel like I could pass out, that is, if I don’t throw up first.

 

But it is in these most frustrating moments after a fall where I have found the resolve to keep going, unlocking strength I never knew I had. I found this resolve - to continue living my life despite the weighty knowledge of what lies ahead – ironically enough, after trying to give up.

 

It was middle of winter in early 2013, and I was going on five years dealing with increasing muscle weakness that I knew was only going to get worse with time. That night, on a side street in Cambridge, Massachusetts, I fell for the umpteenth time, but it was the first time I couldn’t pick myself back up using my own strength. Instead, I had to crawl over to a parked car and use it as leverage to stand up again. When I finished, exhausted, I plopped myself onto the hood. I wanted to quit life right then and there.

 

Over the years, I had suppressed my emotions, putting on a strong façade to keep myself sane day after day. But on this night, it was all just too much. I had fallen twice in five minutes, and if the car wasn’t there to bail me out, I might have taken myself up on the alternate option to crawl under a nearby bush and wait for life to pass me by.

 

In those dark moments on the ground, when I failed over and over again to get up – first with my body weight, then with a flimsy metal fence that never had a chance to support me - I thought this was going to become my life, my future. Fall. Get up somehow. Fall again. My life reduced to perverse clockwork.

 

On the hood of the car, I felt an exhaustion I had never felt before, and have never since. It was a combination of physical exhaustion and emotional burnout. I had used all my strength to get up onto the hood, after crawling 20 feet to even get to the car, after failing twice to get up, after having fallen again five minutes before that and pulling myself up using a stronger fence further down the street. Giving up was not only an emotional decision, it felt perfectly rational. How could I deal with this every day? And it’s supposed to get worse from here?

 

Deep down though, I couldn’t give up. Maybe it was my subconscious giving me a jolt, telling me to snap out of it, or maybe it was a divine nudge reminding me I had so much yet to live for – I believe it was both. Eventually, I pried myself from the hood of the car and walked, ever so carefully, the remaining block to my apartment.

 

It was only months later that I could fully understand how that experience was a turning point in my life. The falls haven’t gotten any easier since then, but in finding my inner strength that night – and I had to really be pushed to brink to find it – I gained a new confidence. I realized that if I could withstand the pavement, the failed attempts to get up, the dark thoughts that swirled through my mind, even the knowledge that falls like this would become a regular occurrence, I could withstand anything. Suddenly, dreams that were dashed no longer seemed impossible.

 

Doors that had closed in my face opened once again. No problem seemed insurmountable. This audio clip, recorded on the phone and edited by Dr. Annie Brewster, chronicles my nine-year journey, back to 2008, when I was first diagnosed and started feeling symptoms, on through the present day. My life these last nine years feels like a three-act play – Act 1: Denial, Act II: Depression, Act III: Acceptance.

 

I am in a better place today, although I still fall, and still occasionally wonder if there is a limit to how much frustration I can take. But it is from these moments on the ground, when I am forced to confront the magnitude of my disease, watching helplessly as the mobility of my former life slips further out of reach, that I have learned to let go. To let go of the feeling of permanence that each fall brings. To let go of the notion that this is all my life has been reduced to. To let go of what I can’t control. Falling is merely one activity – albeit a miserable one – in a life that is so much more than my muscle weakness. Falling can be physical or emotional, but it happens to all of us, repeatedly, even with the most careful planning. I hope that my story – and my lessons learned from the pavement - can be one of many stories that you can refer to when life knocks you down.

 

Because, as I learned the hard way, and as the great saying should have gone, it’s not how many times you fall that matters. It’s not even how many times you get back up. What matters is knowing that you are going to fall again, and when you do, that the sidewalk is powerless to stop you. You are more resilient than you know.

 

 

Listen to Chris's story and hear more audio stories from Health Story Collaborative here.


 

College Voices: Birthday Balloons

By Isabel Taylor

 

My younger brother, Simon, will always be my best friend. He was born with a mitochondrial disease and was never able to speak or walk, yet he exuded kindness through his unique and loving personality. Simon's gratitude radiated during each of his days, no matter how tough. He often needed nebulizer treatments and suctioning to aid his breathing, but he flashed us huge grins despite the discomfort of the mask and tube, as if we were all in on the same joke. He truly loved and appreciated the things that many of us take for granted, like taking long naps, getting off the bus after a day spent at his special education school, going to music class, and spending a sunny afternoon sitting outside. He especially loved spending his birthday with family, friends, and colorful balloons tied to his wheelchair. I will always remember the huge smile he had whenever he caught a glimpse of the Perry the Platypus balloon I gave him for his twelfth birthday, which somehow remained inflated for months.

 

Several months after his twelfth birthday, Simon’s respiratory problems became severe. We learned that he likely had less than six months to live. This news was difficult for me to handle as a sixteen-year-old, but my parents and friends offered immense support. My best friend often escorted me out of the classroom when I needed to cry, and my mom frequently picked me up early from school and took me to our favorite coffee shop. In November, Simon began a hospice program and continued to enjoy each day through massage therapy, music, his teachers and caregivers, and our family.

 

On March 26th, less than three weeks after Simon’s thirteenth birthday, I received the call from my parents that I had been dreading. They told me that they raced home after an urgent call from his caregiver. He was having more trouble breathing than they had ever seen, and they weren't sure how much time we had left with him. Since he had survived many rough days in the past, I clung to the hope that when I got home he would still be smiling at his orange thirteenth birthday balloons.

 

My mom stopped me at the door on my way inside the house. She told me Simon had passed away a few minutes prior. My vision blurred and I dropped my backpack. I ran into my parents’ room where Simon lay, still believing that he would be okay. Once I physically reached his body and could no longer hope for another day with him, it felt like my whole life shattered. I hugged him, crying, and wondered how we would continue on without our favorite ray of sunshine.

 

While losing Simon was unbelievably traumatic and devastating, it motivated me to spend time with other children and adults with special needs. Two summers after Simon’s passing, I worked as an assistant teacher at his special education school and as a respite caregiver for people of all ages with disabilities. I am grateful to have had the ongoing opportunity to work with individuals with exceptional needs and to teach and learn from them. My experiences with Simon and other members of the special needs community with whom I connected have inspired me to work toward a career in medicine. I plan to dedicate my life to offering care and love to children with disabilities.

 

 

Isabel is a junior at Vanderbilt University majoring in Medicine, Health, and Society. She grew up in Michigan but currently lives in Boise, Idaho with her Great Dane, Arthur.

 

 

 


Learn more about the Community Voices and discover more empowering health stories here

 

College Voices: Ouch

 

By Hannah Todd, Rice University and the University of Texas

 

 

Putting the pieces of pain together can’t be done by just asking, “Where does it hurt?”

 

I have always been somewhat accident-prone. Each time I tripped and fell as a child brought the same routine. I would sit on the edge of the tub in my parents’ bathroom with a bleeding knee and a tear-streaked face as my mom or dad got out the Band-Aids, Neosporin, and the despised hydrogen peroxide (it stung too much when it fizzed). I would point to the scrape and roll up my sleeve to reveal any other “boo-boos.” I would leave their bathroom with my lacerations clean, my face dry of tears, and feeling okay, albeit a little achy.

 

Nearly fifteen later, as a sophomore in college, I shadowed Dr. X every Wednesday afternoon for the practicum component of a semester-long course on Medical Professionalism. In Dr. X’s office, many patients would come in with a laundry list of pain, soreness, discomfort, and hurt. The question “Where does it hurt?” seemed insufficient to understanding their pain fully. The patient may have struggled to push back on Dr. X’s hand with their face. They sometimes found it difficult to answer inquiries such as, “When did the pain start?” or, “Is it radiating?” All of these are pieces of the understanding required to provide adequate and appropriate treatment. Doing so demands the asking the patient multiple pointed questions while also testing them physically. This understanding appeared to be elusive and difficult to acquire for three main reasons: time, creativity, and trust.

 

Time

 

During my Wednesdays with Dr. X, I often noticed a tension between the care patients want and the realities of care in our current healthcare system. Patients would often try to show her pictures of their grandchildren or a recent vacation. Sometimes, they, an aging parent, wanted her to explain over the phone what was wrong with them to a concerned child who could not make the appointment. She always obliged as best she could but the system in which she provided care made it difficult. Dr. X was known in her practice for seeing roughly half as many patients as her fellow physicians. She often mentioned to me how difficult it was to accommodate these seemingly irrelevant components of a patient visit when they were often what made the patient most comfortable and most inclined to tell their story.

 

The doctor’s visit with the patient can only last so long, for other patients need care too, and there are only so many hours in the day. Thus, even when the “right” questions are being asked, patients may not have the opportunity to fully translate their feelings, aches, and pains into words with context (a mosaic of experiences, emotions, environment, and everything in between). As a result, it is challenging to gain a strong understanding of what they are experiencing and subsequently make a suggestion about how to treat their condition(s).

 

Creativity

 

I often noted Dr. X’s inventiveness on our Wednesdays together, inspired by her ability to ask questions that led her closer to a diagnostic truth regarding the patient’s experiences. Sometimes people are insecure about their diets, how much they exercise, how often they take a prescribed medicine, and other areas of their lives in which they are not perfectly compliant with doctors’ orders. Thus, we are less likely to offer responses to a provider’s question that allow them to help us, for we are trying to protect ourselves without even realizing it.

 

This reminds me of visits to the dentist. When the hygienist asks if I’ve been flossing as she scrapes and polishes my teeth, I know that I have to be honest because she has the proof right in front of her. But we all often lie, feeling sheepish for not doing what was asked of us.

 

Sometimes a matter-of-fact question like, “Do you go to the gym regularly?” is sufficient for a useful answer that guides the doctor to a diagnosis. However, sometimes it seems more appropriate and productive to ask, “What is your daily schedule?” This gives the patient a chance to tell the doctor what they want, be it that the entirety of their exercise regimen consists of walking to work, or that they stop at Chick-fil-A on their way home for dinner. Although this question may not have appeared at the start to have a direct correlation with healthy eating/regular exercise, it may make the patient more comfortable and allow for a more organic conversation. When Doctor X asks more flexible and open questions, this allows for more creative and varied responses that are generally more constructive toward devising a care plan.

 

Trust

 

Meeting a patient where they are in a non-judging, kind, and sensible manner, they are much more likely to open up and let the provider know what hurts and how they feel. I trusted my parents to clean my wounds after a fall off my bike and bandage me all up, pointing them to the areas in need of a little love. Similarly, I observed Dr. X’s patients explain pain “at a level eight” that keeps them up at night with a trust that she will take their words and turn them into a diagnosis and treatment that gives them relief.

 

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Although all patients are different, everyone expects individualized care from their doctor and are usually hoping to be healed. Time, creativity, and trust are crucial pillars that support how the provider meets their patient’s needs by putting their symptomatic puzzle together into a diagnosis.

 

When I was a little girl, I expected my parents to take my skinned knee and clean it up so that I was good as new. With Dr. X’s patients, their complicated aches and pains require more than just a Band-Aid, but she does have the power to offer them solace. I hope one day to be able to provide antidotes for my patients’ pain, and will strive to ask questions that allow me to do so.

 

 

Hannah Todd is a rising senior at Rice University, where she is majoring in Spanish and Policy Studies with a minor in Medical Humanities. Additionally, she is concurrently pursuing her Master's in Public Health at the University of Texas and ultimately plans to attend medical school, which would allow her to integrate personal, academic, and professional experience into care for and policy regarding children with medical complexity.

 

 

Learn more about the Community Voices and discover more empowering health stories here


 

 

Medical Student Voices: The Big Questions and Gray Areas

 

The Big Questions and Gray Areas: How I Grew During Third Year of Medical School

 

 

 

 

 

 

 

 

 

 

 

 

Three Pairs by Nicolette Overton 

 

Written by Alyssa Wohl

 

 

“It was incredibly hard. I learned more than I ever thought possible.”

 

My childhood friend Allison had asked me about my third year of medical school, which is notorious for being challenging, overwhelming, exhausting, rewarding, and exhilarating.

 

The first two years of medical school are typical school with weekday classes and unit tests every few weeks. Then during third year (called “core clinical” year), we are immersed in the day-to-day work of being a physician. We spend approximately 8 weeks working with resident teams in the hospital in each of the core medical disciplines: internal medicine, surgery, pediatrics, obstetrics/gynecology, and psychiatry. At the end of each rotation, we complete a national exam.

 

I went into third year expecting to apply, reinforce, and build upon the book knowledge accrued during my first two years of medical school, blissfully unaware of the uncertainties and philosophical challenges inherent to a patient’s medical care. But during third year, I mainly had to learn acceptance. Acceptance that medical decisions are rarely obvious, that internal validation need not be secondary to external validation, and that the best patient care starts with proper self-care.

 

As medical students, we have a vague understanding of the limitations of medicine. A Wall Street Journal article entitled “Why Doctors Die Differently” by Dr. Ken Murray details the phenomenon of medical professionals utilizing fewer medical services than the average American when making end-of-life decisions. Medical professionals witness patients receiving interventions that prolong the days, but sacrifice the quality, of life. People who work in medicine see the tolls that CPR, feeding tubes, and ventilators place on already vulnerable patients. The general public has been primed by the media to see these treatments as more often life-saving than not. Those without medical backgrounds hear what is possible; but medical professionals recognize what is realistic. During medical school, we are taught the contraindications to certain procedures or treatments. There is rarely discussion about what to do in that murky in between: when something can be done, but may not be in the patient’s best interest.

I will never forget a patient I had on internal medicine whose daughter demanded he be “full code”, meaning that if the patient went into cardiac arrest he would receive CPR and a breathing tube to be kept alive. The patient was 88-years-old, with metastatic colon cancer and an infection in his blood. I felt for the daughter of the patient. She had no other experience with this sort of care. I also felt for the medical provider, who described that giving this patient CPR would be inflicting immense pain and suffering (ribs break during CPR) to a patient who had an already poor prognosis.

 

These situations were common in the hospital. In these moments, I felt as if I existed in limbo. I resided in the in-between space; I was both the medical professional and the patient’s daughter. It was from this vantage that I realized everyone has the same goal: self-preservation while acting in the patient’s best interest. Each side just approaches the situation from a different angle.

 

End-of-life discussions were the moments when I grew the most. All of the physiology, pharmacology, and anatomy that I fervently studied meant very little when trying to quantify the quality of a patient’s life. I came to understand that sometimes, the best thing to do is step back, assess the bigger picture, and ask ourselves what we are trying to accomplish.

I also took stock of my own life during third year. I have always put pressure on myself to be “the best” and honed study skills over the years so that I know what I need to succeed. In third year, the evaluations by our attendings and residents are also factored in to our final grade. The way a student’s personality, interests, and sense of humor jived with a resident’s often reflected the student’s grade more than anything else. In the beginning of the year, I would often change my interests and style to fit that of the attending. I approach medicine from a bio-psycho-social perspective, but many of the doctors with whom I worked did not. Often, a doctor would scoff at the socio-economic factors involved in the patient’s health. I would feign disinterest, if only to appease the resident. As the year went on, I came to value my opinion of myself more than any one attending or resident’s opinion of me. Patients went out of their way to thank me for my help and ask for me to be there with them during procedures, which reassured me that my approach is valid. Though I did not always receive the best numerical grade, I was able to sleep better knowing that I provided patients with what I believed to be the best possible care.

 

Third year forced me to consider the big questions. I needed to come to terms with the impossibility of being “the best”, realizing that it can be easy to become so hyper-focused that we neglect what’s truly important. I faced my fears: not only will I not excel at everything, but I can’t expect myself to. I realized that ethical gray areas exist, and that what I typically worried about didn’t really matter. I had to start balancing self-care with self-actualization, and for that I would not trade anything.

 

 

 

Alyssa Wohl is a now fourth-year medical student from New York. She is hoping to work as an Adolescent Medicine doctor. She enjoys chocolate, yoga, and spending time with her two pugs.

 



 

 

 

 

 

 

 

 

 

 

 

 

College Voices: Buy Me Some Peanuts

By: Sarah Ramsey, Boston College '18

 

It was a humid night in June,

One of the hottest days of the year.


You could feel your hair standing up on its end,

As a cold and warm front collided.

 

It left passers-by wondering if the lightning would ever stop.

 

It did.

 

So people believed that the storm was over,

That all was well.

 

I was too loose.

 

A group of us were going to Fenway,

First game of the summer,

First beer of the week.

 

The change in weather felt like a good omen,

We bantered as we walked up to Yawkey,

Taking in the smells of Franks,

The shouts of vendors,

And the sight of RED.

 

As we moved past security,

And scalpers that hounded,

We made our way to our seats.

 

Suddenly,

To the right of me,

I heard a sickening sound.

 

Like the thump of a bird as it hits a window,

Or the crack of a gun as it soars through the air,

Or the split of a head as it meets concrete.

 

A man lay,

Cane sprawled in front,

Unmoving.

 

RED blood started pooling,

Pouring out of both ears,

Like my beer pouring out of its tap.

 

People were screaming,

But I couldn’t hear.

 

I kept thinking,

He is right next to me,

DO SOMETHING.

 

I thought back to the CPR training I had taken two summers before,

Was this it?

Is this what I was supposed to do?

Is this the final test?

 

I got confused and spun in a circle,

Walking around next to him,

Hoping that suddenly I would know his diagnosis,

As the loops straightened out in my head.

 

Looking,

Gaging,

Watching,

But not acting.

 

THANK GOD.

 

Someone else nudged him

Someone else was on a phone,

Someone else said help is on the way.

 

THANK GOD SOMEONE ELSE IS HERE.

 

My friends call me over,

Terrified,

But they know they are ok.

 

They don’t know him,

He’s not their dad,

Uncle,

Or brother,

But I know him.

 

He was standing right next to ME.

 

Just that morning,

I was telling someone about my degree.

What do you study?

Medical Humanities.

What does that mean?

EMPATHY.

HELP.

CARE.

LOVE.

SUPPORT.

Oh ok. I get it. We need more people like that.

I AGREE. We need more people like that.

 

NOT

Running away,

Waiting for someone else to step in,

A FRAUD.

A PHONY.

A DISGRACE.

 

As the stretcher wheeled itself,

And four EMTs rushed after it,

I considered chasing after them,

I felt sick.

 

I’m sorry man!

I didn’t know what to do.

I’m sorry man!

I panicked.

I’m sorry man!

I’ve never seen blood pouring out of a brain.

I’m sorry man!

I haven’t signed up for this.

 

But I didn’t.

 

Maybe I’m not EMPATHETIC.

Maybe I’m not destined to:

HELP.

CARE.

LOVE.

SUPPORT.

Maybe we need more people like that.

I AGREE. We need more people like that. 

 

Sarah Ramsey is an incoming senior at Boston College with a major in Operations Management and a minor in Medical Humanities. She is the Managing Editor of the Medical Humanities Journal of Boston College and a trip leader for the Appalachia Volunteers. Sarah aspires to use her business background to improve and expand health opportunities.


 

College Voices: Where it Hurts

 

Written by Evelyn Caty, Boston College Class of 2020

 

The day I learned that I needed hip surgery, I cried tears of relief.

 

On September 23, 2013, I was playing in a JV field hockey game when all of a sudden, after passing the ball to a teammate, I felt something go wrong. It was… a pop?… a snap?… a tear?… and it came from somewhere in my left backside. I could not identify precisely where—in my lower back, upper hip, or glute—I felt it. As I crawled off the field, I struggled to assemble an explanation to provide the athletic trainer. To this day, I cannot say exactly where it was or what it felt like, but I do know, as the past three and a half years have proven, that something was not right.

 

For the first eleven months after my injury I was diagnosed with a torn muscle in my hip, but physical therapy did little to relieve my pain. I began to see an orthopedic surgeon specializing in hips, who saw nothing notable on my MRIs and encouraged me to continue treating with physical therapy. After months and months of hard work without relief from the pain, I started to worry that I was somehow doing it wrong. Finally, a new MRI of my hip, this time done with contrast dye, showed torn cartilage in the joint. This would require surgery to repair. When, after a year of persistent and unidentifiable pain, as well as numerous consultations with hip specialists, a surgeon walked into my examination room and claimed that he knew exactly how to cure my pain, I sat on the table in front of him and sobbed. The recovery would be long and painful, but at least it would mean I was healing. At this point I would have done anything.

 

After my surgery, I completed nine months of physical therapy to rehabilitate my hip and the rest of my body. But as the physical therapy came to an end, I noticed that something still felt off. I occasionally had that same original pain; it was a pain distinctly different from the normal soreness of post-operative recovery, and I was all too familiar with how it felt. Worried that the operation had failed, I tried to ignore my discomfort for a year and a half. I was terrified that if the surgery had not provided a cure, then nothing could. This past December, after the pain suddenly grew much worse, I finally decided that I could no longer ignore my fears. I scheduled a follow-up appointment with my hip surgeon, who referred me to a spine center to look for other possible causes for my pain. To this day, my doctors and I are still searching for its source.

 

My pain taunts me. It comes and goes. It moves from place to place. It floats, it hovers, over my mind and body, cruelly defying articulation. The English language offers a myriad of terms to describe pain: sharp, dull, burning, throbbing, sore, stiff, tender… the list goes on. And yet, my three-and-a-half-year search for the words to most accurately capture my experience has left me with the following clumsy explanation: most of the time it does not feel quite like a throb, but more like a series of discrete pinching and tugging sensations with each movement of my lower body, located somewhere between my sacroiliac joint and L5 disc; other times—when I sit or stand for too long—it aches across most of my lower back. Sometimes, though, the pain deviates from both of these descriptions.

 

Without looking at a calendar or an MRI report, I can list off the top of my head everything I have done in the past three and a half years to try to relieve this pain—five MRIs, a CT scan, countless X-rays, six specialists, two chiropractors, two injections, and one unsuccessful surgery—including the dates on which most of them took place. But, despite my three and a half years of familiarity with this injury, I cannot explain how it physically feels.

 

Three years ago, I spent my time training for the sport I loved, pushing through the pain of conditioning and doing everything I could to prevent the pain of injury. Now, I spend my time catering to physical pain, altering my movements and avoiding certain motions altogether. I prepare for each doctor’s appointment by obsessively practicing my story—the words I’ve carefully picked to best convey how the pain feels—in my head. I brace myself for the disappointment of watching yet another medical professional fumble for a diagnosis. And I desperately hope for the opposite: I hope that one of these appointments will lead to definitive answers. I hope to one day again cry tears of relief like those I cried the day I believed in the miraculous powers of hip surgery.

 


This piece was originally published in The Medical Humanities Journal of Boston College, Volume 3, Issue 1, Spring 2017.

 

 

Evelyn Caty is currently a sophomore at Boston College majoring in Biology and planning to minor in Medical Humanities. She works as an EMT for Boston College Emergency Medical Services, and hopes to pursue a career in healthcare in the future.

 

 

 

 

 


Learn more about the Community Voices and discover more empowering health stories here


 

 

 

College Voices: The Show

By Hannah Todd

 

This week in shadowing, we saw a coronary artery bypass. Because we shadow anesthesiology, we get to see the doctors and nurses set up. It is like setting up a show, everything must be done a certain way in a certain order. From inserting the catheter to carefully draping him so only the necessary areas of his body were exposed (in his case, his entire torso and his legs) and even unwrapping the towels a certain way, everything must be done just so and this was all before he was even cut open. A nurse got us step stools to stand on so we could see. The surgeons walked in at the last minute, taking the drill and the blade and adjusting the lights above. Then, they got to work and we stood there mesmerized until we had to go back to class.

 

On the walk back to campus, I was in a daze. Upon reflecting on the experience, I found it to be simply bizarre to consider how the show and many others like it are continuing in operating rooms all over the world while we walk outside in the light of day. I couldn't stop thinking about the aftermath of the show. When I was in fourth grade, I was the wicked witch of the west for my class’ version of the Wizard of the Oz and the face paint dyed my face green for three days after. The show was over but I felt like it was still happening to me.

 

The man who underwent surgery today is going to wake up and hurt. But the surgeons had to break him to fix him. It was simply another day of work for these doctors. The anesthesiologists likely won’t see the patient again, but the surgeons, the ones who weren’t even there from start to finish, will be the ones to see him again when he wakes up. He will go home eventually and have a long, difficult recovery from this invasive surgery.

 

I admired the patient’s bravery and the surgeons’ dexterity. I was amazed at the anesthesiologists’ ability to compute complex body statistics against powerful medications. If I walked out in a daze and the man under the knife walks out in pain, how do the doctors walk out? Do they hurt, too, when they imagine what it feels like later to have the many sutures down your chest? Do they smile when they think about the years of life they added to his by just doing their job? In the operating room, they are all one show: surgeons, anesthesiologists, nurses, perfusionists, and even us undergraduate students. Outside, we are a fragmented entity that carries only our unique perspective of the show, combined with some input from their explanations.

 

As a doctor, I will need to learn how to make sense of the show every day. To care for children with medical complexity, children whose needs do not fit inside a single diagnosis or a single medication, I will need to work in teams to put on good shows. But at the end of the day, when I will go home hopefully to my family, I wonder where I will put it. I am an empathic, emotional, and sensitive human being, but I am also driven and dedicated. I believe that I will learn how to integrate what I see of and the role I play in the show into who I am, without losing myself in the process.

 

 

Hannah Todd is a rising senior at Rice University, where she is majoring in Spanish and Policy Studies with a minor in Medical Humanities. Additionally, she is concurrently pursuing her Master's in Public Health at the University of Texas and ultimately plans to attend medical school, which would allow her to integrate personal, academic, and professional experience into care for and policy regarding children with medical complexity.

 

 

 



 

The Courage to Reach Out: What Being There Really Means

 

An Interview with Kelsey Crowe, Ph.D., co-author of There Is No Good Card for This

 

 

Dr. Kelsey Crowe is an author, speaker, and founder of Help Each Other Out,

which offers Empathy Bootcamp workshops to give people tools for building relationships when it really counts.

She earned her Ph.D. in social work at the University of California, Berkeley, and is a faculty member in the School of Social Work at California State University. Regular clients for her talks and workshops include UCSF and Stanford University, among several others. She is a cancer survivor and human survivor, each day finding meaning in connection and a purpose driven life. You can reach her at www.helpeachotherout.org

 

I first discovered Kelsey’s website, Help Each Other Out, two years ago while doing research on how to comfort people living with serious illness. I loved her honesty, compassion and gentle humor in her writings about how to reach out to people in distress. She was learning to live with breast cancer, creatively weaving her personal experience with her expertise in social work and social justice. Drawing from her research, insights, and stories, she developed an innovative training program to teach relational skills called Empathy Bootcamp. We chatted on the phone a few times about our common interest in the power of empathy and our writing projects. I found her to be warm, encouraging and generous, even though she had recently endured losing her home in a terrible fire. Fortunately, no one was hurt. Later in 2015, I was delighted to hear she was well on her way to landing a book deal, co-authoring a book with the viral Greeting Card designer of Empathy Cards, Emily McDowell. Kelsey and Emily’s book has just come out this January, called There is No Good Card for This: What to Say and Do When Life Is Scary, Awful and Unfair for People You Love. It’s a wonderful resource with lively, vibrant graphics and illustrations, yet full of practical guidance for the delicate art of reaching out.

 

 

Q&A with KELSEY CROWE

 

Congratulations on your book! What experiences convinced you to write There is No Good Card for This?

 

Kelsey: My experience with cancer was an invitation to write my book. I began writing when my friend in Grad school got cancer, and I wanted to reach out, yet I was hesitant. I felt stuck. What should I say? How did I belong as a friend now? My experience of feeling so powerless as a friend led me to explore the cause for my hesitancy to reach out to people who were seriously ill. By doing research and interviews, I gathered material about how to offer help for people in times of need.

 

While developing this book, I worked as a faculty member at California State University, teaching courses on public policy. I found research that convinced me how important it was to publish a guide for reaching out to people in crisis. I created a guide book, and I tried submitting this to publishers, but it didn’t take off at first. And then, I got diagnosed with breast cancer. That changed everything about how I wrote about helping each other, and I revised my book. I realized I needed to make my private life public. I began a website called Help Each Other Out where I could share my own experiences living with cancer as well as share about so many hard times like loss or divorce and others that affect many of us at one point or another. In addition to the Help Each Other Out website, I collaborated with several empathy experts to develop a training program for lay people and healthcare settings called Empathy Bootcamp, which gives people communication tools for being with others in their time of suffering. With a stronger platform developed for my book, I again worked to find a publisher.

 

Ideally, to enhance my book project, what I envisioned was having it illustrated. I had heard of Emily McDowell and loved her Empathy Cards, which were going viral in 2014. As a woman who had been through cancer herself, Emily designed greeting cards for people coping with illness. I had wanted a comedic tone to illustrations for my book, and she seemed like the perfect person to approach, but I wasn’t quite sure how to connect with her. Then, one day, amazingly, I received a text from a friend at the New York Trade Show who was sitting right next to Emily! That friend connected with Emily in person and introduced my book project. Soon I followed up and called her. I found out that she had also wanted to write a book about empathy. We talked, and she was pleased that I had already written and researched so much of the material—that the project was fully vetted and ready for her input. So, we created the book together with her illustrations, humor, and ideas.

 

Kelsey, what a remarkable story. It sounds like it was “meant to be” that you connected with Emily—fantastic timing, Kismet. You were the perfect duo to create this book! If you could sum it up, what are the five main takeaways from your book, There is No Good Card for this?

 

Kelsey: Here are five takeaways about reaching out to others:

 

  • 1. Err on the side of doing something rather than doing nothing. If you are trying to decide whether to reach out or not, it’s better to offer whatever you can, rather than hold back.
  •  
  • 2. You can manage how much you give. Comforting someone can be manageable for who you are, and where you are in life.
  •  
  • 3. It’s much more helpful to listen than to find that elusive “useful” thing to say. Even if you’ve been ill with cancer, it’s important to respect and remember that each person’s experience is unique. Use your experience with illness as a good reason to listen to each other.
  •  
  • 4. Small gestures make a big difference.
  •  
  • 5. Give what you know how to give, and don’t wait to be asked to give.
  •  

A few years ago, you started an innovative training program, Empathy Bootcamp. Many of your participants are healthcare providers and caregivers. How do you teach empathy—or how do you teach a way to “operationalize empathy,” as you put it?

 

Kelsey: First of all, empathy is about a way to live and not just about doing your job well. Empathy is a part of connecting and listening in all areas of our lives. In the past few years, empathy has become a popular buzz word. People are interested in learning empathy skills, especially in our digital age. In my Empathy Bootcamps, I focus much of the training on listening skills which are essential to putting empathy into action. I present three different categories of listening that each requires different skills. It helps to distinguish empathic listening from the other kinds, as empathy is so important as a first step to establishing a relationship.

 

  • - Empathic Listening: This is listening that builds trust. We start with empathic listening before we go to other interactions.
  •  
  • - Evaluative Listening: This is where we ask questions to offer up a judgment or assessment.
  •  
  • - Fact-finding Listening: This is when people ask a lot of questions because they need specific knowledge to be helpful, like when networking with someone to appropriate resources, or when being a patient advocate.
  •  

Empathic listening is the kind of listening we should do most of the time. The other forms of listening can come across as judgmental, or take the person off track from what they truly want to talk about--so use evaluative and fact-finding listening with careful discretion.

 

Yes, so we need to start with empathic listening to establish a relationship with the person before we move into problem-solving mode. I see how empathic listening lays the foundation of trust and understanding before we get to evaluative listening and fact-finding. Otherwise, we feel more like a commodity than a human being!

 

Kelsey: Right!

 

I’m so glad you are teaching this vital skill in your Empathy Bootcamp. On a more personal note, I was wondering if you could share an experience of being comforted when you were first diagnosed with cancer? What were the gestures of comfort that touched you the most?

 

Kelsey: It wasn’t so much the gesture itself, but the timing of that gesture. One evening I was so tired, felt so alone and shut down. I was pushing myself hard to make it to the end of that day. And suddenly that evening I received a delivery of flowers. It was so spontaneous and beautiful. Perfect timing.

 

Another time I told someone I was afraid I was going to die. She just hugged me and held me for a moment, and it helped me so much.

 

What you said convinces me that the little ways we reach out can be vital. One simple gesture just might just come in the nick of time to get us through hell.

 

Right. Our words or actions don’t have to be perfect--just reach out. On my worst days, it was such a relief to know someone cared.

 

So true, Kelsey. It’s been a pleasure talking with you today—I could talk with you all day! Thanks so much.

 

Kelsey: Thank you!

 

RESOURCES

 

Kelsey’s truly helpful site, packed with resources: Help Each Other Out www.helpeachotherout.org


Emily McDowell’s Empathy Cards— uplifting and honest! www.emilymcdowell.com


A wonderful read and fantastic guide for times we need to reach out:

There Is No Good Card for This: What to Say and Do When Life Is Scary, Awful and Unfair for People You Love.


 

Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress (Penguin/Random House, 2010). Formerly a rehabilitation counselor for 20 years, she speaks, teaches and writes on how to offer comfort in times of loss, illness, and major life transitions. Keep up with Val at www.theArtofComforting.com

 

 

My Breast Cancer: Reflections Sixteen Years After Diagnosis

 

 

 

By Leah Meyer


 

As a social worker at Massachusetts General Hospital in Boston, Sandy often works with young adults who receive potentially life-threatening diagnoses. “I think it’s absolutely jarring”, she reflects on the experience, though not solely in her capacity as a provider. Sandy was diagnosed, herself, with bilateral breast cancer when she was 35.

 

That first year included bilateral mastectomies, two different kinds of chemotherapy, and radiation. Then followed 15 years of hormonal therapy, so “technically”, she states, “I didn’t end treatment until a little more than a year ago.” Though cancer doesn’t affect her day to day existence anymore, it has certainly not disappeared from her life. She refers to it, wryly, as “the gift that keeps on giving.” She still sees the oncologist every year and waits anxiously for the results of her annual blood tests, and her history as a cancer survivor has forever shifted her self-perception and the way that others perceive of her.

 

When reflecting on her own treatment, Sandy thinks of the work she does with people in recovery from addiction, citing the value of the “one day at a time” philosophy prominent in 12-step treatment models. “I really took my cancer diagnosis and took life a day at a time…I think I was already living that way in part because of the work that I did,” she recalls, but cancer made this way of life even more pressing. Early in her diagnosis, soon after completing the most aggressive stage of her treatment, she remembers that she stopped saving in her 401K. “In part”, she says, “because you wonder, am I gonna be around for retirement?” She wanted to spend her money, to go on fun trips and do the things she had always dreamed of doing. Nowadays, with the fear of recurrence less of a constant in her mind, she has shifted her perspective slightly. “I have to make plans for tomorrow, but I have to live in today.”

 

And so it comes back around, her experience in return informing her work. “I think it’s actually helped me be a better social work provider because I know both sides...you know what it’s like.” She urges providers not to make assumptions about patients and their priorities, as she herself experienced when preparing for her own double mastectomy. Sandy, who is a lesbian and an accomplished athlete, recalls that one of her doctors made a comment on how the surgery would give her the “athletic body” that she had always wanted. “That was what I wanted? No,” she corrects, “I’d rather have my boobs.”

 

Some of the memorable lessons Sandy holds close required a different kind of strength from her usual persistence and fighter’s attitude. As an example, she remembers attempting to tackle a strenuous ropes course as part of an Outward Bound community building activity with her breast cancer support group while in the midst of treatment. Always one to try the hardest route, she fell her first time through, but she got up and tried again, this time taking a gentler approach. “Sometimes the easier way is the better way,” she realized, and she has carried this lesson forward.

 

She has found the humor in her experiences too, believing that “you can do stand-up comedy about some of the things” that cancer brings along, telling the story of a prosthetic breasts mishap on the golfing range. And there’s always new material. You have to keep laughing.

 

As for advice to others navigating similar health challenges, Sandy says “don’t let it stop you.” She acknowledges that you may have to “accommodate” the cancer, but you can (and must) keep going. “You can have aggressive cancer and aggressive treatment and still get better,” she reminds us. Also, she encourages people undergoing treatment to identify what kind of support is helpful and to seek it out. Personally, she finds the hushed, knowing prompts of “how ARE you?” annoying, but knows that some people like to be asked. “Whatever works for you, teach your friends,” she urges, “find community.” Finally, and perhaps most importantly, “try to celebrate each day.” Some days, Sandy remembers, “I was miserable, I was sick as a dog. But I still tried to put good things in each day no matter how crappy I felt, and that made it easier to get through.”

 

 

Leah Meyer is an intern with Health Story Collaborative and a student at Yale College.

 

When There’s No One to Call: Caring for Patients Who Lack Social Support

An interview with Dhruv Khullar, M.D., M.P.P.

 

By Val Walker

 

Introduction: Social Isolation is an Increasingly Important Topic

 

Could there be anything more frightening than going to a hospital alone for surgery, knowing that no one will be by your side when you wake up afterwards? What if you have no one to turn to for help when you become seriously ill?

 

As a former rehabilitation case manager, I witnessed too many patients without social support. Too often I scrambled to contact any possible friends or relatives to help, and came up short with utterly no one available. I turned to social science research to better understand why people were so isolated. An alarming AARP study in 2012 on social isolation highlighted formidable barriers to social support:

 

1. Living alone (Nearly 40% of adults over 65 are living alone.)

2. Mobility or sensory impairment

3. Major life transitions/losses.

4. Socioeconomic status (low income, limited resources).

5. Location (rural, unsafe or inaccessible neighborhoods)

6. Being a caregiver for someone with a major impairment.

 

Moreover, the study revealed that full-time caregivers are mostly women who are often alone without support while struggling to take care of their own health care needs.

 

The AARP study convinced me that being socially isolated is most often not a choice. Many societal and economic forces prevent us from being able to count on each other for support. Today we're more likely to find ourselves alone in a hospital regardless of how much or how little we've invested in our relationships. Indeed, in 2012, I found myself alone, stranded in a hospital bed after my hysterectomy because my friend failed to show up as planned. I had no one to take me home, and no one to check in on me during my first days after my surgery. I had made firm arrangements, but people just did not come through at the last minute. This shocking experience opened my eyes to how alone and stranded any of us can be.

 

Recently I read a New York Times article titled How Social Isolation is Killing Us by Dhruv Khullar, MD, who works at Massachusetts General Hospital. Dr. Khullar's compassionate view of his socially isolated patients sparked my interest in contacting him for an interview. Annie Brewster and I were thrilled when he responded to our invitation and agreed to talk with us.

 

 

 

Q&A with Dhruv Khullar, M.D.

 

 

You wrote a powerful piece for the New York Times called How Social Isolation is Killing Us. As a doctor at Mass General Hospital, do you personally see an increase in socially isolated patients?

 

 

Dhruv Khullar: All the time--every day, I see real life evidence of how isolated people are. And social isolation is increasing.

 

Lots of interesting statistics are out there about social isolation, but it’s my personal experience that motivated me to write more about this problem. I see elderly as well as younger patients coping with a lack of social support. We’re now living in a world of smaller families, and we often lack the extended support that larger families once provided. I see older patients living without their core group of support after many of their loved ones have passed away.

And many younger people are dealing with the stigma of addiction or mental health issues, so their social support has been thinning out.

 

In our digital age, we can have 1000 friends on Facebook, but who is going to show up at the hospital for us? Who is really there in our support system? Many connections we have through social media are only secondary supports, not the one or two people we can really count on in a crisis.

 

What can doctors do to help socially isolated patients?

 

Dhruv Khullar: I think it’s in the doctor’s purview to ask about the social needs of our patients. Doctors have an important opportunity to screen for social isolation just by asking a couple of questions. We can identify isolated patients by asking simple, concrete questions such as “Who do you have to talk to about your surgery?” Or “Is there someone to take care of you when you go home?” Just two or three basic questions can make a difference. Also, practical, care-based questions are less likely to be threatening for a patient. Instead of starting with psychological issues (“Are you feeling lonely?”) we can ask, “Is someone coming by to see you today?”

 

And once we have identified a patient who lacks social support, we can make a referral to a social worker, chaplain or hospital volunteer. They are a crucial part of the team. Healthcare has become so complex, it’s better to deliver care in a team-based setting, especially for a patient who has no one to rely on. Though we as doctors can play a vital role in identifying socially isolated patients, we need to alert our team so these patients get connected to the best services that meet their needs.

 

What you said makes so much sense. It does seem natural that a doctor would ask questions about who is caring for you—who is there for you. And further, I’m wondering this: If your doctor is genuinely concerned that you don’t have anyone there for you, could these questions encourage you to talk openly about your lack of support?

 

Dhruv Khullar: Yes, I believe asking simple, care-based questions can make it easier for patients to have an honest conversation about their need for more support. And this conversation could alleviate some of the shame and distress about being alone without support. Conversations, even brief talks with doctors, have a way of normalizing what has felt uniquely embarrassing or shameful. A patient might not feel so alone when their doctor emphasizes that social isolation is a common problem.

 

You got me thinking about the stigma in our society that makes it so difficult to speak up if we lack social support, and are truly alone. We don’t want to appear “needy.” What do we do if we really don’t have people to turn to when we must have surgery, or find ourselves seriously ill?

 

Isn’t talking about being alone and needing help a hard conversation to have?

 

Dhruv Khullar: Conversations can start with a doctor or healthcare provider, even if we are too ashamed to discuss our lack of support with someone else. Once the conversation has started, patients may be able to face their need for support with less shame and more action. Once again, care-based, concrete questions can help us speak openly, and begin planning our care, including making referrals for the support that is needed.

 

We need to have more conversations about social isolation. The more candid the better. Hopefully we will find the courage to ask, “Will you be there for me?” And we will keep talking until we know who we can count on.

 

Besides making referrals to hospital social workers, chaplains or volunteers, is there a particular resource that you find helpful when you identify a socially isolated patient?

 

Dhruv Khullar: I highly recommend the Health Leads program. This service is available in many hospitals in Massachusetts and other areas of the country. It can help connect patients to services they need, with links to community resources. I use it very often.

 

When interacting with a patient who is alone and lacking support, what do you say or do to put them at ease?

 

Dhruv Khullar: In the busyness of the hospital what sometimes gets lost is the human connection. One patient I remember was dying alone, without any loved ones around. At those times, it’s important just to listen. So I listened to whatever he wanted to talk about. Being present was as valuable as anything else I could do.

 

In my experience, even in just a few minutes, there are moments for deep connection. If we make the time, we can deeply and honestly communicate about what’s most important.

 

I’m really moved by your words. Thank you so very much for your generosity and insight, Dr. Khullar. And I’m so grateful that you’re encouraging people to talk more about this problem of social isolation. You have validated for me just how vital it is to have honest, realistic conversations when we need to ask others to help us.

 

Dhruv Khullar: Thank you, it was a pleasure to talk with you today.

 

Resources

 

More about Dhruv Khullar

 

Health Leads Program

 

AARP Study on Isolation: Framework for Isolation in Adults over 50

 

Dhruv Khullar, M.D., M.P.P. is a resident physician at the Massachusetts General Hospital with interests in health policy, economics, and journalism. He is a contributor at the New York Times and writes regularly for both mainstream and academic publications, exploring evolving trends in medicine and health care. He recently worked at the ABC News Medical Unit, where he helped curate and communicate health information, and was previously at the White House Office of Management and Budget (OMB), focusing on Affordable Care Act implementation.

Khullar graduated with honors from Yale University (B.A. in Biology), and earned his medical degree (M.D.) at the Yale School of Medicine. He also received a Masters in Public Policy (M.P.P.) from the Harvard Kennedy School, where he was a fellow at the Center for Public Leadership. His work has appeared in the New England Journal of Medicine, Journal of the American Medical Association (JAMA), New York Times, Washington Post, Wall Street Journal, USA Today, The Atlantic, Slate, Politico, and Scientific American. He was recently recognized by LinkedIn as one of the Top 10 Healthcare Professionals Under 35.

 

 

Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress (Penguin/Random House, 2010). Formerly a rehabilitation counselor for 20 years, she speaks, teaches and writes on how to offer comfort in times of loss, illness, and major life transitions. Keep up with Val at www.theArtofComforting.com

 


 

 


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