It was quiet that afternoon. Weekday afternoons were always quiet in our house. Dreamy, lazy, languid in the heat of summer, resting on the downstairs couch I heard you calling me from upstairs. Your voice had that same timber, will always have that same timber every time you call me upstairs. I rose, hesitant to leave that sunlit couch, but your voice again Claire, come up just a moment! there again beckoned me up, up into that bathroom. I entered the room and met eyes with you and you said I just need your help for a moment in that hushed way, in that way that made me know it was ME who needed to help you, and it couldn’t be Jill. That hushed language between parents and older siblings is one you learn from the moment that second child is born. Out on the smooth counter-top sat Dad’s old electric razor. I lifted it, felt it weigh in my hands. I knew what was coming, God we all knew it was coming. It had been coming since April, since that hushed conversation, that same hushed language in the car on a same sunny afternoon, that same don’t tell Jill had weighed the same as this razor weighed now. You sat in that chair and stared back at me from the mirror, but your eyes weren’t meeting mine, not really, and mine weren’t meeting yours, not really.

You looked like a child then, like I did when I was five and waiting for Dad to comb my hair, and you looked up at me, your child, in that same way. Waiting for me to comb your hair. The razor felt heavier now, the weight of that hush felt heavier now, everything was heavier now the moment you looked up at me like that.

I turned the razor on.

It became real then.

I fumbled my way through the already thinning patches of your scalp. I felt unsure, unready, wielding that razor. Shouldn’t I know how to do this, shouldn’t everyone know from the movies? They do this all the time in movies, this moment right here. But they don’t tell you about how heavy that razor is in movies, they don’t tell you how much steel can weigh when you look at me like that.

You made a joke like you always do - that Irish bleak humor never turns off, not even for a second. I laughed. I appreciated it.

You could tell how hard this was, I could tell how hard this was, but we just kept staring and not seeing, not actually. But we knew, and we kept that secret, you and me, between ourselves and the hushes and that heavy, heavy razor.

I finished and cleared some stray hairs from your crown, and you sat (admiring yourself, I liked to imagine). Seeing yourself, that terrifying feeling of seeing yourself, and while you were seeing yourself so was I. I was seeing you, actually. For the first time, maybe.

You were thinner now, medications already starting to wear on you. But you looked determined. But you looked scared. But you looked at me and I knew you were looking at me as equal now, because I was seeing you for the first time. How is it that after sixteen years I am only now seeing you for the first time?

We’ll be okay you said. That ‘we’. The ‘we’ that meant we were in this together, as partners, as equals, that ‘we’ that made up that hushed language, that ‘we’ that had been weighing down on me since you pulled over that car on that sunny afternoon in April and you told me that you had breast cancer.

Yes, that same ‘we’ that made me know we—you, and me, and Jill—we would all be okay.

Claire Stauffer is a senior at Boston College, where she is double majoring in Biology and English. This piece was originally published in The Medical Humanities Journal of Boston College, Volume 1, Issue 2, Fall 2015.

September 1990

In her dream, there was an intruder in the house, a frightening presence. She found herself sliding close to the wall as she tried to become invisible, to find a way to escape. Outside, she saw a group of people standing on the lawn. Her husband was there, her children, as well as friends and colleagues. Several policemen arrived. An officer stepped out of his car with a bullhorn yelling: “Betsy – Betsy! Stay in front of the window so we can see you! Then when we shoot we won’t hit you!”

I pour myself a cup of tea, musing about the dream and the feelings it evoked. I am struck by the way my psyche is working to sort things out. Breast cancer. Ever since that moment of diagnosis, that jumble of terror and grief, my mind has alternated between dead slow and hyper-speed. The mammogram, biopsy, partial mastectomy – events that ripped through my orderly life - only numbed me further to this trauma. Yet this dream had sent a message directly related to my dilemma: should I agree to undergo radiation treatment? As a psychotherapist, I believe in the unconscious. I guess I have to trust its wisdom in putting these images together.

I must get going, for I have to go back to the hospital. As I head up the stairs to change, I experience again that strange sense that has haunted me throughout this time: a sense of profound loss and fear coupled with a feeling of incomprehensible reality. Every day in my office, I hear so many people speak of how difficult it is to take in the enormity of their troubles. I marvel at their stamina, their dignity, their bravery. But I cannot relate it to myself facing breast cancer, for I feel so out of control, so abnormal. My life seems to be passing by me in a series of jolts. It is so difficult to express my feelings, for I am topsy-turvy. I can see my home, my daily tasks, my work, my family. Yet I am separated from all that by the image of a neon sign constantly flashing in my head: I have cancer I have cancer I have cancer. I see a woman walking toward me on the street, and I want to scream out to her, to ask if she has it too. Or I want to blame her for not having it. I look so normal - but nothing is normal, whatever that means.

Scary things tend to happen in rooms that have no windows. Lying on the hard treatment table in the radiation suite I await the “marking up,” the tattooing around my breast that will guide the beam of radiation. Those dots will be mine for life. I stare up at the inane poster of a cute kitten pasted on the ceiling. Technicians move around me with what look like slide rules and triangles in their hands. I am the challenge, they have the formula. While I recline, awaiting their solutions, I distance myself and see this experience as a movie scene: semi-nude woman, one arm carelessly thrown up over her head, harsh bright lights all around. Is this really happening? The staff is kind but impersonal. I envy them their distance from this disease even as I feel isolated by their detachment. They photograph me; I feel like a tumor. Then they tattoo dark blue ink dots in a large rectangle around my left breast - the guide for daily treatment, for 33 times. I worry - my heart is under there.

Before leaving the hospital, I have to meet with the doctor who will be in charge of my treatment. I must sign a release form forgiving them if the treatment causes me irrevocable harm, such as a fatal tumor, or heart damage. And of course, I have to expect to be burned from radiation. Is this really necessary? Can I trust that the treatment won’t put me at further risk for more breast cancer? I feel so cynical about it all and then, suddenly so angry I can hardly contain myself. Rationally I sort of understand all this, but I am no longer rational. Somehow I switch into coping, clench my teeth, sign the form, and leave. Exiting the garage, I am asked if I am a patient. I am not a patient! So they charge me the visitor amount – nine dollars for my one-hour visit. I am enraged and drive blindly out to the street.

I am driving now, back on the same road, still in the same day, heading to my office. But I am not the same. I have a patient to meet in an hour, and I am just going to make it. I feel enormously strained in my heart. Where can I put breast cancer for 50 minutes? I must look so changed; I must radiate fear and anger like a thundercloud. But when I walk into my office I am complimented on my dress… and I open the cancer file in my head and put my experience inside. I turn myself over to my patients’ pain. What a relief. I can do this.

This is the day after Thanksgiving – and the first day of radiation treatment. Am I thankful? I try to put it into perspective; as people have said to me I am lucky; it could have been worse. This will not be as bad as having a mastectomy. That is true…but am I lucky?

Another underground hospital garage, dank and cold. Down, down I drive, watching the clock and worrying I will not be able to find a space. Is that enough of an excuse for not showing up? I find my way to another radiation site in this huge hospital. A nurse leads me to a closet-like changing room. “Everything off from the waist up, dear” she instructs. I am trembling as I hang my clothes in the steel locker. Later, I cannot find the right locker.

As I emerge into the waiting room I surreptitiously scan it. There are eleven people here, all in white hospital gowns like me: they have cancer. There are men, women, and a teenage boy – he has no hair under his Bruins cap. In a wheelchair in the corner, her head wrapped in a scarf, sits a pale young woman, a basin in her lap. No one looks at each other; they simply wait. My shield of denial is crumbling, for the reality of why I am here can no longer be denied. I want to bolt out the door, out of this place of cancer. I do not want membership in this club! I feel devastated, alone in my fear and pain. And I know I must repeat this scenario for six and one-half more weeks.

Again I am driving home, the same road, the same day. A replay flashes through my mind: the treatment room, the enormous radiation machine, the technicians leaving the room while I am radiated, the hum of the machine, a mobile of hamburgers swinging over the table. The hamburgers are to distract the children they treat, who are harder to manage when they are frightened. I am the model of cooperation – I want them to shoot straight.

On the kitchen calendar at home, beside the date, is the number 33. Each day it will go down; as I cross it out it seems more hopeful, one less treatment to go. I call my husband and tell him what the experience was like. It does not feel like me talking to him, for I am in a faraway place. I have this unreal sense again, for to talk with him about what to have for dinner seems so insignificant. Do we still do dinner? Am I still me? What is it I have lost? It is what I have gained that has caused the feelings of profound loss: a new identity. I have a disease. I am a cancer patient. I belong to that club, the cancer club. My normal life is gone.

As I set the table for dinner I trim the tulips I bought earlier. As they are squeaked into their vase, they are still the same. That gives me pause. I take the salmon out of the refrigerator – how many times have I set this table, cooked salmon for dinner? Through the gain of cancer I have lost normal, for living my life, work, and daily tasks at the same time as I endure treatment for breast cancer isn’t normal. Reflecting on this feeling, I see my life now as two parallel tracks: on the left, the usual track of a day, breakfast, work, dinner with my family; on the right, the unusual track - the letters that spell C A N C E R. That image, in all its starkness, captures the feeling. I focus on it as I place the fish in the pan, then have to pause, because the image is changing. Some tiny connections are materializing between those two tracks, some small everyday predictable links that may start to ease this whole ordeal for me. One of these is happening right now – as I’m making dinner for my husband. It’s salmon. Salmon is normal.

Originally published in 1995: Tyson, Elizabeth, 1995. "The Case: Salmon Is Normal." Second Opinion 21, no.1 (July 1995): 35 -37. Reprinted with permission from the author.

I'm not a diabetic, I’m a person with diabetes. I was diagnosed with Type 1 diabetes in 1993. I thought my year of exhaustion, weight loss and crazy mood swings were the result of a bad marriage and the stress of parenting 2 active boys, ages 3 and 6. But for some reason, that day, after drinking my umteenth glass of water which did nothing to quench my thirst, I stopped and thought about the symptoms I'd been living with for over a year that suddenly seemed to coalesce in a moment.

I called the doctor and described my symptoms. “Do you think I have diabetes?” No one was going to tell me that over the phone. I went in for a test and 24 hours later I had a diagnosis: Type 1 diabetes. A week later, I was staring at a much-xeroxed piece of paper titled Diabetic Diet with boxes and columns to fill in: food item on the left, amount in ounces and cups on the right. There were other pieces of paper: Diabetic Eating Guidelines and Diabetic Food List. The diagnosis was traumatic enough, but these guidelines and sample diets shrank my world into one miserable, tunnel-visioned focus. I was a diabetic–walkers, blindness and kidney failure loomed on the horizon.

But I followed the guidelines and life came into balance. I gained weight, which was good though initially unappreciated. After months of uncontrolled high blood sugars, I had lost quite a bit of weight from an already thin frame. A few months before my diagnosis, friends began saying, “You look gaunt. Are you OK?” They said “gaunt” but I heard “thin,” another reason it took me so long to see a doctor. I was eating what I wanted and loosing weight–how could this be a problem? But of course it was.

In those initial months I faithfully followed the Diabetic Diet. I ate the suggested amount of food from the suggested food groups and took the suggested amount of insulin to cover the carbs I was faithfully counting. One night, after gobbling down half a peanut butter and jelly sandwich to cover plummeting blood sugars (I still had no idea how much to eat to offset a low), I was hit by a bolt of insight. I said to myself, “I’m going to fit diabetes into my life not the other way around.” In other words, I would define what I ate and when. I would define how I lived my life, not diabetes.

It’s taken years to develop healthy self-care practices. I'm not rigid but I have routines–routines I created myself not routines imposed upon me. I’ve come to believe wellness has 3 interactive practices: pursuit of knowledge about the condition, a creativity practice, and a mindfulness practice (or some kind of spiritual practice). The word "practice" is used deliberately to mean an activity that is part of life, essential to life and life affirming.

My blood sugar control can still be erratic and difficult at times. Sometimes I feel overwhelmed, irritated and discouraged. Feelings can’t be avoided but they can be handled with skill and kindness. Creative, meditative practices have encouraged me to take care of myself with kindness and compassion, using knowledge, creativity and mindfulness. There are no quick fixes. Sometimes situations turn around rapidly after a diagnosis but deep and lasting change is the work of a lifetime.

Words are powerful. I may be dealing with a condition or illness but I am not the illness or the condition. The word "diabetic" defines me as a disease. I’m not. Sometimes groups or individuals claim a noun or adjective as a way to re-claim power, but I’d rather nix labels altogether.

I actively explore the question, "what does it mean to be truly healthy?" Advances in technology, nutrition and exercise are important, but I want creativity and empathy at the center of my life. I'm a public health professional, health advocate, editor, writer, artist, parent, and so much more. I also happen to have type 1 diabetes. That perspective has deeply affected how I take care of myself and interact with others.

About Valerie:

Valerie has lived well with T2 diabetes for 23+ years. She credits a mindfulness meditation practice, access to health care, healthy food and exercise, a circle of supportive friends/family, her creative pursuits in visual arts/writing–and luck–to being complication free so far. She works in community health, and trained as a diabetes lifestyle coach. She believes both clients and providers would benefit from narrative medicine practice in the healthcare system.