When a heavy object falls on one’s foot, it exerts pressure on the skin and muscles, and that hurts. Raw sensation is the pressure, and everything beyond that is interpretation. To feel is a combination of raw sensation and interpretation from the brain based on past experiences.

But when one loses the ability to recall, one loses the ability to interpret and sometimes even the ability to feel.

My grandmother’s gradual decline all started over a decade ago, in the Malagasy province of Morondava, in Madagascar. My father remembers the day when everything radically pivoted and his world turned upside down: after a strenuous day of housework, my grandmother —for just a moment — confused day and night.

A few years later, the diagnosis was given: Alzheimer’s disease, coupled with brain aging and a strong 25-year-old depression. My grandmother moved to the capital city of Madagascar to become the sixth resident of our household. My parents, sisters and I shaped our lives and schedules according to what we thought my grandmother would feel most comfortable with. She was the beloved center of our lives.

Within several years, all my grandmother could remember clearly was her name. It seemed as if she had entered a parallel universe she had created herself. She got lost in her thoughts while tracing flower patterns with her feet and counting the number of lights out loud. There was no way of telling what she was thinking. I could not bare thinking about how often she felt lost, alone, or misunderstood. The thought haunted me for days; it made me feel utterly helpless.

As her amnesia worsened and her brain activity declined, my grandmother stopped interpreting raw sensation, and, slowly lost her reflexes. She sometimes forgot to drink water after putting a pill in her mouth, and chewed on the medicine instead. The bitter taste surely made its way through the taste buds on the back of her tongue, and was probably sent to her central nervous system, but somehow was not interpreted. Not a single cringe showed on her face.

One may say that her inability to interpret sensation caused her to stop feeling. Indeed, not once did my grandmother show signs of anger, sadness, or even slight feelings of impatience. But she often laughed. Each time she disappeared into her parallel world, I witnessed genuine happiness.

Some people believe that acts of kindness and empathy do not make a difference in a world in which man has already reached the moon. But I believe that it is the little steps we make that end up being the most precious ones. Offering to share her popcorn while watching cartoons on TV made my grandmother happy. When I simply asked about her day, or commented on the flowers that grew in the garden, a smile appeared on her face.

As I grew older, I understood the importance of empathizing with my grandmother. And how could I possibly attempt to do so without her collaboration? I could not change the way she perceived her world, but I could change the way I perceived her world: it all had to do with acceptance.

Empathy, I feel, is the ultimate solution to alleviate one’s pain and help someone make peace with their condition. Within empathy lies acceptance. Coming to terms with a condition is the first step towards wellness. My grandmother was not part of the world I knew so well — this was a fact I could not argue against. There was no use in me trying to include her in the present by constantly reminding her of the time of day or the year, trying to bring her back into my reality only confused her.

In the last years before my grandmother passed away, my family and I ceased trying to heal her by forcing her to remember. We let her imagination go free, and even took part in her adventures. Her imagination, stimulated by compassion and attention, helped her recall certain pleasures of places, smells, sights, tastes, and faces from her past. This seemed to allow her to reconnect with small part of her old self, and make her feel more comfortable in her daily life. I am eternally grateful for all I learned from my grandmother. Her story taught me the immense powers of compassion.

Heena Nissaraly is a sophomore at Boston College majoring in Nursing and minoring in Medical Humanities. She aims to become an empathic nurse specialized in anesthesia or hospice care, and hopes to eventually improve healthcare in Madagascar.

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.

"Three Pairs" by Nicolette Overton

“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 stalk 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.

Today I attended the funeral of my friend and neighbor of 35 years, Ms. Enid.

No one knew her exact age except for her best friend Ruby, another neighbor here at the Roycroft, our six-storey art deco apartment building that we all lived in.

Enid was distinguished and healthy, but dementia grabbed her sensibilities in her last year. Because she was single and had no family, she was sent to a nursing home far away from the Roycroft and her friends, a good forty-minutes drive on the highway.

Her death has had a huge impact on me. I miss her tremendously, of course, and her passing has made me reflect upon my own situation. You see, I’m single too. Even though I have my will in place and am relatively healthy (despite the Canadian health system), financially stable, and of sound mind and soul, I’m not sure that my end-of-life wishes will be carried out. Who will be my advocate?

I’ve selected two executors, but in reality, in the absence of caring family or friends, I worry that no one monitors the executor. What happens if there’s no one left alive to watch over you and your belongings? Can the executor do anything he/she pleases with their client’s estate, body, burial, and belongings? It seems the courts only step in if someone blows the whistle.

Enid’s funeral service seemed designed more to please the needs of her estate lawyer than to please her. When I asked him where Enid wanted to be buried, he admitted that he had never asked her. Her ashes were to be shipped two hours away to a cemetery where he believed her parents are buried. I asked him if Enid wanted to be buried with her parents. He said he hadn’t asked her. How could that happen, I thought?

Interestingly, Enid did have the wherewithal to state that her obituary NOT print her age. Good for you, Enid. Age should be irrelevant, and besides, it’s no one’s business.

These days when we hear a person’s age, assumptions form. An older person is rarely thought of as being or having ever been vital, skilled or talented, and yet, many were and are. While other cultures honor and respect their elderly population, North America seems to dismiss the thought that a senior can be captivating, attractive and interesting. Adding insult to injury, seniors are often referred to as ‘cute’. A puppy is cute. A baby is cute (sometimes).

Unfortunately, after a certain age, people become a member of the invisible race. (I should keep that in mind the next time I want to steal something.)

Enid's memorial service was different than those I’ve been to, particularly because she had no living relatives, no one to eulogize her life from personal experience, and no one to shed tears the way primary mourners do. I cried plenty when I received the news of her death, but somehow that's not the same thing. Or is it? Enid’s friends didn’t want to speak at her service, so I was asked to say something.

I spoke about being Enid’s neighbor for over three decades and what she meant to me. I spoke about the night we spent together one New Year’s Eve, sharing stories while she polished her late mother's silverware, an annual ritual. I spoke about the answer she gave me when asked how she maintained such a close friendship with Ruby for over 60 years.

“Two things, Marla…boundaries and privacy.”

And I spoke about the best advice she ever gave me: “Take a walk every day, and have a goal for your destination. It could be to buy an apple, or the newspaper. Most importantly Marla, get out and move.”

As I looked out into the faces of Enid’s few mourners--just eleven neighbors from The Roycroft, her cleaning lady, and our superintendent--I thought about the sense of community we had created, complete with love, hate, and disparity.

When Enid’s memorial concluded and we crowded around her boxed ashes, and fragile-framed portrait, her lawyer asked a painful question:

“Does anyone want Enid’s photographs?”

Enid's photographs were respectfully scattered about the memorial room as if it was a staged set. We didn’t know who the people in the photos were or their importance to Enid. But there they sat, and what to do with them now was our dilemma. These photos may have been of her parents, or treasured aunts and cousins. We shall never know, now. What we did know was that no one wanted them, not even Ruby (who is also single with no family and 95 years young). Perhaps for Ruby it is just too painful a reminder of what she will miss. I wonder how long she will last without Enid, her best friend, to walk with and talk with and share meals with, especially on Christmas Eve and New Year’s Day.

An 8x10” portrait of a younger Enid now sits in our lobby, with a battery-operated votive candle beside it. Soon it will be removed, tossed into the trash and driven to the city dump where it too, will become ashes.

Questions swirl around in my mind.

Is this how the single population in our society end up? Our once cherished photographs recording our life, loves and lineage all to be tossed into the garbage?

What becomes of their worth, their knowledge, and their very existence?

Deep in my heart, I know that my photos, articles, and recordings of my careers will also end up in the city dump along with the other single people’s tangible memories. They are nobody’s keepsakes but mine.

For now, I’m going to dust off my framed articles of me as standup comic, inspirational speaker, and jazz singer, as well as my photo collection of family members and dogs. I’ll try not to think about what will become of them when I am gone.

A common epitaph is: “You Will Live in Our Hearts Forever.” Another popular one is “Gone, but not forgotten.” I’m starting a new one: “Ashes to Ash, Tossed in the Trash.”

I’ve learned a lot from Enid’s death. We must all legally prepare for our inevitable passing, and get our specific needs, desires and end-of-life arrangements down on paper, while we are mentally able to do so. And we should have someone outside of the executor’s circle making sure our wishes are respected. Some find it morbid to discuss such matters. The truth is, it’s imperative. I’m feeling a bit low today and I know what Enid would tell me. She’d say “Marla, go for a walk. Pick a goal for your destination. Buy an apple, a newspaper, it really doesn’t matter what. Just get moving. It will make you feel better.”

I think she’s right.

Marla Lukofsky is an Inspirational Speaker, Comedian, Singer, Cancer Survivor and Writer. Her stories have been published in various medical journals including Cell2Soul. With two TEDx Talks to her credit, Marla continues to share her experiences in the hopes of helping others.

I sit down in the chair opposite yours. It’s a lovely day outside: Spring peeks her head out along the esplanade, the sun warms our space beside your bed.

 You don’t know me. I am a stranger to you, but you let me stay anyway.

Our conversation starts slowly: small talk about the weather, hospital food. Then we shift; the gradual dance of vulnerability between strangers begins. You take a breath, and begin letting me into your life. I listen and learn. About your frustrations. About how long you have been here, in this hospital, beneath the fluorescent lights. About the lack of answers, the constant struggle for control. I nod and murmur.

Now you talk about your family. About feeling like a burden to them, being here, sick, dying. Now you talk about depression, the loneliness of death, how narrow the tunnel becomes when you’re heading towards its end. You talk now as a human being struggling to hold onto your humanity.

Gingerly, I reach across the sun-lit space. I hold your hand, but I say nothing. What is there to say in the face of human suffering? Where words fail, touch and silence speak.

--------

For the past two years I have been blessed to work as a palliative care volunteer in a hospital. My job is simple: to provide company to patients who are chronically ill or dying. Really, I just serve as a companion – to sit with, to talk to, to watch TV beside, to listen to music with. In this role, doing these simple things, I have received one of the greatest gifts of my life: through others’ stories of suffering and joy, I know the beauty of a shared humanity.

 If healthcare is defined as curing or fixing, then I am essentially helpless as a volunteer – I have no skills, knowledge, or experience that can cure or fix these people. However, I have come to learn through time spent with my patients that sometimes it is not knowledge, tools, or skills that are required for healing. Rather, healing can be wrought by each of us simply as we are, as people. Sometimes all we need to provide a moment of healing for one another lies in the ways in which we are able to hold, sit, and simply be in each other’s company.

From my patients, I’ve learned something both humbling and empowering: in a world where we are constantly trying to fix, sometimes it’s okay to just sit together and be broken in our own separate ways. It is through the cracks within us that the healing enters.

Claire Stauffer is a recent graduate of Boston College, where she majored in Biology and English. She serves as an EMT-B and palliative care volunteer in the Boston area. Her first narrative piece “Weight” was featured in the Boston College Medical Humanities Journal and on the HSC College Voices blog.

Jennifer Sax

Director of Communications, Good Shepherd Community Care

By Val Walker

1. What sparked your interest in having conversations about our end-of-life care?

When I was 14, I began volunteering for a hospice in Maine where my mother worked as a nurse—and she still is a hospice nurse. Even as a teen, and throughout my life-- both personally and professionally,  I have witnessed how having conversations about one’s end-of-life wishes has impact on the way we live our lives.  These conversations are not just about dying. They are about how we want to live until we die. They are about taking responsibility, expressing our values and advocating for our care.

2. What are the most important reasons for having conversations with our loved ones and providers about the end of our lives?

Studies consistently report that one of the single most important factors in whether patients and family members report a positive end-of-life experience is whether or not they have had a conversation with their family and loved ones about their wishes. We find that when people have had these conversations, caregivers and loved ones suffer less complicated grief – and have less guilt, confusion and stress.

As providers, by initiating “the conversation” we have the opportunity to significantly and effectively change the kind of care people receive.

I’m a firm advocate for having these conversations from an early age. Life can be unpredictable and it’s never too late, until it is.  The earlier and more frequently we can be having these conversations the more comfortable we will become and the less likely we are to end up making decisions in crisis.

3.  As a communications professional, how do you currently advocate for having end-of-life conversations?

As part of my role in directing the programming of Good Shepherd Institute, I frequently have the opportunity to raise awareness and promote community dialogue around end-of-life issues and planning. I believe that we are in the midst of a pseudo “social revolution”  towards increasing people’s comfort with end-of-life issues ---advance care planning is an integral piece.

There are lots of wonderful organizations out there doing this work. I recently participated in a new media campaign for The Conversation Project and we have had the pleasure of hosting its founder, Ellen Goodman, at one of our Institute Dinners. Good Shepherd is also a partner of Honoring Choices Massachusetts and we participate annually in National Healthcare Decisions Day (April 16th) by sponsoring community programming and education. This year we are hosting “Who’s Your Proxy” as a fun and interactive way to take some of the “edge” and stigma away from these topics.

4. Because you’re so active in teaching the importance of end-of-life conversations, how do you envision the healing role of conversation in general for health care?

With the influx of the electronic medical record and changing health care regulations, I believe we have been at risk of discouraging conversations between patients and providers. That said, there are advocates for change out there (Dr. Atul Gawande, Being Mortal) and certainly some Medicare reform that speaks to the importance of these conversations. The bottom line is that I think people need to be advocates for themselves and know that they can “open the door” to these conversations – not only with family and loved ones, but with providers as well.  For so long we have been a society focused on cure. Having these conversations is about shifting our focus to what is truly important.

I couldn’t agree more, Jennifer. Thanks so much for speaking with me today!

I found Jennifer’s training resources for end-of-life conversations to be very helpful, and have listed below the links, for further reading:

Good Shepherd Community Care

http://www.gscommunitycare.org

The Conversation Project, and Founder, Ellen Goodman

www.theconversationproject.org

National Health Care Decisions Day (April 16, 2016)

http://www.nhdd.org

Honoring Choices Massachusetts

http://www.honoringchoicesmass.com

The Institute for Healthcare Improvement

www.ihi.org

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. Her next book, 400 Friends and No One to Call: Breaking Through Isolation and Building Community will be released in March 2020 by Central Recovery Press.

Keep up with Val at www.HearteningResources.com

Gretchen Hunsberger was first diagnosed with stage 2 pancreatic cancer in 2013, which she successfully treated with radiation and chemotherapy. But fourteen months later in spring 2015, her remission ended when the cancer returned, this time at stage 4.

In June 2015, Gretchen shared her courageous story about deciding to forgo medical treatment and embrace her impending death. Gretchen realized the unparalleled value of community, and how much can be learned from individuals living in Stage 4. She mourned the loss of her vitality, but through mindfulness and meditation practices, experienced joy in the wonders of this world.

Gretchen passed away on August 31, 2015.

Resources:

To learn more about pancreatic cancer, ways to get involved, and sources of support, visit Pancreatic Cancer Action Network.

For inspiration on navigating cancer, explore Bernie Siegel and Mark Nepo's writing.

By Annie Robinson

If you were told you only had 8-10 months left to live, how would you spend that time?

Paul Giese was diagnosed with acute myeloid leukemia (A.M.L.) in January 2013, at age 75. He was told he had 8-10 months to live. 22 months later, on November 25, 2014, he shared the story of his remarkable journey beating the odds.

With his devoted wife Lucretia by his side, Paul endured months of chemotherapy, experimental drugs, and the trying search for a bone marrow transplant match. He navigated uncertainty, bore physical deterioration, and tolerated disappointments. He also rejoiced in the connections he shared with others, and truly made the most out of the time he had.

Paul passed away on January 14, 2015.

Resources:

To learn more about A.M.L., visit the Leukemia & Lymphoma Society’s website. They also offer information aboutsupport groups for patients and their families.

The New Yorker published an article on advances in treatment for A.M.L. this past September, 2014.