A tumor.

The first time I noticed “It,” I was looking at my reflection in a dingy bathroom.

“Hello,” It introduced itself, “I’m new, but I’ll be here awhile.” It was a lump on my neck, found only because it cast a shadow.

“Do you have a name?” I asked, hoping in vain that this time It would answer. Silence, as always, would follow. Just the steadiness of my heartbeat, pulsing blood through my veins—through It, feeding It, helping It grow. Out of my control, yet within me.

I bargained with that silence as if it would have made a difference. “If you go away, I’ll go to the gym more. I’ll eat fewer desserts.”

Still silence.

“I’ll work harder in school. Go to the gym EVERY day. Eat no dessert.”

Still silence.

But the bargain felt complete, and the silence less threatening, and Its presence retreated back into the corners of my brain. I carried on, hating the body that put me in this position. Feeling helpless to do anything, yet determined to do something—if I couldn’t control It, I’d control everything else.

This cycle repeated for months. Until the first time It broke the silence.

“My name is Danger,” It said, “and you should fear me.”

“What kind of Danger?” I asked. But my translator, the doctor, didn’t know. It wasn’t speaking clearly yet. The doctor needed to make a personal visit. Needed to cut It open and confront It. Surgery.

So It had a name. A vague name: Danger.

But I was no closer to knowing what kind of Danger. An urgent one? A false one? “It’s most likely nothing,” the doctor said. The visit would be a formality, just to confirm this.

The Danger’s silence was deafening. I went back to bargaining, desperate for more control; more information. My bargaining had me eating too little, working too hard, and stressed out about how to act ‘normal.’

I looked like I had it all together, people later told me. Wrong: I was a sad and anxious human.

In the midst of these bargains, I learned about cultivating a gratitude practice while scouring health blogs for diet tips. Be grateful, and happiness will follow, the experts said. I wanted to be happy.

So I would wake up 5 minutes earlier and list what I was grateful for. My family, my friends…the usual. Then 5 minutes became 10, and I listed more things: the opportunities to attend college, and to live near the best hospitals in the world.

One morning, there was something new on the list. I hadn’t planned it. It just slipped out unexpectedly:

“I’m grateful for my body.”

What?!

My body, inhabited by Danger, my elusive enemy? My body, the home of that tumor? No, that can’t be right, I told myself.

But then I thought about it. My body lets me run and jump and sing and laugh and love. My body was fighting back against Danger and all his pervasive silence.

Okay…maybe I could be grateful for my body.

It became my mantra. Even on days when I didn’t believe it, I expressed gratitude for my body. In the beginning, that was most days. But I had believed once, so I knew I could believe again.

The next time Danger broke his silence, it wasn’t good news. The visit that my doctor paid didn’t confirm It was “nothing.”

 “I’m sorry, but it was cancerous.”

So that’s your real name. Not “It.” Not “Danger.” Cancer.

But the name, Cancer, was liberating. While fog had once obscured the path to health, now I had a flashlight, and a map. Now I knew my enemy. How to fight him. How to beat him.

I think that I’d known all along that It was really Cancer. It hadn’t felt like a friendly tumor when I first found it. It felt wrong, full of dark energy. Panic and anxiety greeted me whenever I examined It in the mirror.

But now that it’s all over, pride greets me when I look in the mirror. My scar is a daily reminder that two surgeries and radiation sent Cancer packing. My body fought back. She wouldn’t let the worst happen because she was strong and full of love. Now, when I run or jump or sing or laugh or love, it’s a victory lap.

Cancer wanted to rob me of fully embracing life, but I didn’t let it. There wasn’t one specific moment when I realized that I had really started living; there were lots of small moments that added up:

Like on the day I was three months clean, and my friends surprised me with an enormous card telling me how proud they were and how much they loved me. That was the day I realized that I didn’t fight cancer alone for a single moment.

Or when I was eight months clean, when I walked out of class at the Sorbonne and realized I was living out a childhood dream, to study in Paris. That was the day I realized that I should continue to dream, because those dreams could come true.

Or when I was sixteen months clean, and the leader for a retreat I had agreed to help with kept poking just a little bit more than anyone else had at my feelings about cancer, and I admitted out loud for the first time that I had been scared. That I had pretended I wasn’t so no one would worry about me. That was the day I realized the importance of being truly vulnerable and honest with myself about my feelings.

Really living means being aggressively friendly to friends new and old. It means saying yes to pizza AND fries, because life is too short to choose. It means running faster, jumping higher, singing louder, laughing longer, and loving deeper.

Really living means I don’t bargain with the silence. I fill it with life.

Kitty Sargent is a recent graduate of Boston College, where she studied Political Science and French, and served on the executive board of Real Food BC, a food sustainability group.

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.

When A Mother Decides To Stop Cancer Treatment And Face Death

By Dr. Annie Brewster and Leah Meyer

More than a decade ago, Colleen Lum was diagnosed with Stage 3 ovarian cancer. Her children, Kyle and Kiara, were 11 and 8 years old at the time.

A few months ago, after battling the disease for 13 years, Lum, who lives with her husband and family in Hopedale, Massachusetts, decided to end treatment. Today, at age 56, her health has further declined, according to her daughter. Lum is no longer eating or drinking much. And she's very, very tired.

Through it all, though, she's been clear-eyed about her illness.

"We’ve always been straightforward and honest," Lum said during an extensive interview in June. The kids "get the facts and the truth and it’s not 'Mommy has a tummy ache.' No, 'Mommy has cancer.' "

Lum added: “I was a good parent before cancer, but cancer made me a better parent, because you don’t have time to postpone.”

Listen to Lum and her daughter Kiara share their stories here:

Ovarian cancer is an insidious disease, often asymptomatic until it is quite advanced, resulting in five-year survival rates of under 50 percent.  Lum has beaten the odds and navigated an onslaught of difficult decisions with resilience and a keen sense of her priorities.

"You can talk about sex and drugs and alcohol with your kids because you don’t have time to postpone those conversations," Lum said. "Nobody’s guaranteed tomorrow. And cancer makes that very relevant. When you can sit and talk to your children about your death, everything else becomes easy."

Four years ago, Lum refused to participate in a clinical trial that would have required her to spend several months away from home and apart from her kids. When her physician implored her to enter the trial, saying it was his job to keep her alive, she replied, “Well, it’s my job to be a mother.”

Lum knows that she won’t be around to see her 21-year-old daughter graduate from college — and it's the thought of missing those major life events that saddens her most. "It’s not the dying that upsets me," she said. "It’s the milestones in your children’s lives you’re gonna miss. Seeing them walk down the aisle or seeing them have babies."

Still, she's happy and proud she got to be a mother for so long. "My miracle isn’t that I walk out of here and I get cured. My miracle is that I got 13 years of a Stage 3C diagnosis and I watched an 8-year old and an 11-year old turn into a 21-year-old and a 24-year-old. The biggest thing here is perspective."

After years of intrusive treatment, harsh side effects and approximately 160 rounds of chemotherapy, Lum knew in April that it was time to stop. Her body had had enough. To those who insist she must keep fighting, she said: “So many people want to jump back into denial and pretend … that this isn’t happening. If you’re coming along for the ride, you’re getting in my boat, and my boat is reality.”

Now, with death approaching, Lum is grateful to know that not much has been left unsaid. And she spends time envisioning her death:

I hope I die with grace and dignity, which I probably will, and a few swear words. It’s one thing I’ve got as cancer’s gone on — I’ve maintained my filthy little mouth and my few favorite swear words. I wanna have the best quality of life for whatever days we have, and then it’s like, I don’t know what this whole dying stuff is gonna involve. I hope it’s not painful, I hope it’s peaceful. I hope I can die at home. But I don’t know what it looks like. If I got to call the shots, I’d get to hang around in bed and talk to the very last frickin’ minute. And kinda joke and go, 'Hey, it’s time to go.' And I say goodbye, and I’d walk out peacefully. But as with cancer and most things, I don’t know how much of a choice I get in that.

Lum wants to go out on her terms. “No ventilators or feeding tubes in this body,” she said. While she accepts that she may not be able to control many things that happen at this point, she wants to control the things she can, and she has spelled it out clearly for her family.

For instance: If she is in a coma, she says it's OK to send her to the hospital or hospice. She has chosen a casket, and wants it to be open. She's lined up a caterer for the reception.

In our society we are notoriously bad at talking about death. It wasn’t until this year that Medicare finally began reimbursing for end-of-life conversations between patient and doctor.

In one of the countless conversations Lum has had over the years, she imagines death as a continuation of life, but different: "What if [it's] nothing but two little hills, and there’s a bridge? And you’re just leaving one world to go to another … and it’s really something very simple?”

Dr. Annie Brewster, a Boston internist and founder of the Health Story Collaborative, is a regular contributor to CommonHealth. Leah Meyer is an intern with Health Story Collaborative and a student at Yale College.

Originally published on WBUR CommonHealth Blog on August 5th, 2016.

Resource:

The Conversation Project

“Do I look man enough?”

As someone whose body falls outside the societal ideal, I have struggled to establish a positive body image. Skinny, lithe, and lean, my body might fit the mold of a long-distance runner, but one would hardly consider it stereotypically masculine. One might even say it’s feminine. And if there’s one thing men are taught to reject, it is femininity.

I have spent years painstakingly overanalyzing nutrition and exercise and appearance, trying to decipher whether my body was a body I wanted, a body I felt proud of. I’ve tried to balance my daily miles with my daily calorie intake, a strong lower body with a comparatively weaker upper body. My exercise accomplishments —hikes, long runs, marathons, personal records—can sometimes feel less valuable when I consider my frame.

While trying to make sense of my body, I’ve grappled with the rigid definitions of masculinity and femininity: what constitutes a “good” body versus a “bad” body? The construction of these illusive categories show deep-rooted problems in the way society understands health, gender, and individual expression.

In the United States, the ideal male body is muscular, athletic, formidable, and toned. I don’t have bulging or sculpted muscles. I’m not tall or broad-shouldered. And for so long I focused on how my body failed to meet standards instead of defining my own terms for body satisfaction.

My time at college is marked by small steps forward in my journey towards establishing healthy body image. It has involved coming to terms with the ways in which my body does not meet the dominant standards of masculinity. This progress is largely due to students and faculty initiating conversations and posing important questions about body image and campus culture at Boston College and other campuses across the country.

While exploring my body image, I have grappled with questions like:

“Do I look man enough?”

“Do I look masculine?”

“Do I have a good body?”

“What is a good body anyway?”

What I’ve come to value—and what has helped so much—is having space to explore these questions with others, whether in class, at a lecture, or in a friend’s living room. So many people are exploring these questions!

June was Men’s Health Month, and advocates across the country created space for discussing issues like preventive health and mental health. After long being solely cast as women’s health issues, body image and body satisfaction have become increasingly vital topics

in men’s health as well. For instance, during Love Your Body Week at Boston College, there is always an event that addresses issues of masculinity and body image.

This chiseled ideal of masculinity narrows the range of male bodies deemed acceptable, attractive, or desirable and casts an impossible mold for men and boys. If you deviate too far from that standard, you might just feel out of place. For example, restricting the ideal body to an impossible healthy and muscular standard has produced an unhealthy culture of workout supplements and bodybuilding. The body is often a source of concern and dissatisfaction, and this kind of scrutiny can have debilitating consequences for mental and physical health, as in Body Dysmorphic Disorder and Muscle Dysmorphic Disorder.

Stories about body image are necessary because they reveal the cracks in the impossible model of embodied masculinity. Even starting these conversations can be difficult because stereotypical masculinity dictates that we show unwavering confidence in the face of adversity, that we hide vulnerability. Instead of engaging honestly and critically, we keep quiet.

Against the odds, while in college, I began to embrace my own body and celebrate the remarkable and beautiful diversity of all bodies. At college, we’re encouraged to examine the way our bodies affect our relationships with friends, classmates, partners, mentors, and professional connections. What’s less talked about is how this obsession with idealized bodies affects our relationships with ourselves.

Taking part in the campus conversations about body image and learning to celebrate difference provided the momentum I needed to move forward.

I had many difficult days and experiences, like runs not intended to celebrate my body but to punish it, restrictive eating habits, and experimenting with protein supplements. But I’ve come to focus less on how my body looks, and more on what it can do. I might have a slight frame, but my accomplishments are sizeable. I’ve raced two marathons and run countless miles. I’ve hiked difficult trails, culminating in the most spectacular views. I’ve become an adventurous eater, and I’ve embraced food as nourishment and cooking as an opportunity for building connections with friends and family.

Taking a holistic approach to body image—realizing that I am more than my body as much as I am my body—has helped me recognize the value and worth of my own frame. Instead of focusing on the stereotypically masculine features I don’t have, I focus on what I do have: an agile body that supports my everyday activities, an efficient and powerful stride that powers my long distance running.

I’m only one man, but this body is man enough for me.

Christopher Kabacinski is a recent graduate of Boston College, where he studied English and medical humanities, co-founded the Medical Humanities Journal of Boston College, and led the public speaking and storytelling group Word of Mouth. Originally from Scranton, Pennsylvania, Chris now lives in Boston and works in global public health.