From the Periphery

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Despite having a magical gateway into my venous system somewhere north of my heart… a port they call it… the labs needed to be drawn from peripheral veins. This I was not eager for. It had been four years since a phlebotomist had had her way with me. The results were often painful exploratory expeditions ending with black and blue inner arms.

But truly, if one is hired by a huge hospital, one probably has gotten to the point of being able to perform pain-free blood draws in the dark. That’s what the last one told me. What? That she learned how to become really good by doing this in the dark! Now I can’t, for the life of me, remember why she was in the dark.

All this to preface what happened a few weeks ago. I am in a cancer immunotherapy drug trial at the great Mass. General Hospital in Boston. Over two sessions in two weeks, I met two amiable doctors and two equally amiable staff members….the Trials nurse Tina and the ebullient scheduler and go-to person, Jasmin. My job is to return weekly for labs and a check-in with a nurse. But it wasn’t Tina who saw me…it was Jen, a total unknown to me.

First, I met yet another phlebotomist. I can no longer remember their names. And remembering names is something I make a point of. These are “my people;” the least I can do is recall their names.

After another stint in the waiting area, meek Ashley comes to get me, leaves me in an exam room and in a few moments in comes a lanky blonde with thin long ponytail. She shakes my hand and sits across from me. One long leg crosses the other as she leans back into the doctor’s chair.

I am reporting on myself to a total stranger. She is appropriate, if not warm and fuzzy. I note my own discomfort without being able to name it or even quite justify it. After all, the four amiable people mentioned above were all new to me too. But it was with them that I contracted to meet. Who was this lange lakshn? The adult grown up in me answered her questions, shared my news, asked my questions.

But, when I left and was back in the waiting room…. I was flooded with amorphous feelings I had trouble sorting out. We had spent two hours getting here, two hours in this sanctuary and we were about to embark on the two hour journey home. What was my problem!? What was I expecting? There are dozens, maybe hundreds of women between the ages of 22 and 42 working on this floor of this renowned cancer institution. This is their job, their work community. They see each other every day—all year, chat about vacations, boyfriends, meet for lunch, commiserate about long hours, tired feet, cranky patients or demanding doctors. And I am one of several dozen patients who come into their world. I am the 12 o’clock ovarian. They are doing their normal; I am the one trying out the role for cancer catastrophe. This is not a role I chose. This is not My normal. My needs is so different. I cannot play the part as if it’s normal.

“See you next week, Jen,” she calls out as she cuts the plastic wristband off, but remembers to save it for the parking garage discount.

Turning toward Ken, I announce firmly that I need some time to think and debrief. We stride over to quiet corner. And I begin to talk. I occasionally glance at Ken. He is looking right at me, attentive to every word. His focus helps me focus too. All the words come tumbling out and eventually form clear thoughts and sentences. Everything I have already written and then more. Suddenly it becomes clear how deeply I wanted to be acknowledged by the “family” I had signed up for—those 2 doctors and their 2 workers. I wanted to be remembered. Those new faces had been an alienating factor. I was returning to the mountain, to Sinai, and wanted to be embraced.

And then, and then… I arrived at the source of that longing. Starting when I was 3, 4, 5…10, when I traveled between my mother’s world and my father’s, from southern hemisphere to northern and back again… I had wanted to be remembered and embraced then, too. Not to be the once-a-year visitor who interrupts their preoccupied lives. Later, when my mother returned to the Unites States and the distance between my homes was only 1 hour, the disappointing returns happened every week.

I am grateful for the gift of resilience that has girded me my whole life. But, to be in touch with painful feelings… that is a gift, too. Had someone validated them for me when I was a child…that would have been a kindness. But, I am able to validate them for myself now. I think of myself as fortunate to be able to recognize the pain, to be able to stop and explore it, and also to discover it’s genesis. Part of resilience was dismissing or ignoring pain. I thought I had lived at the periphery of my families’ lives…never really in and never really out…and that these families co-existed only in my mind, never in geographic or calendar space. What I had not realized was that I had lived at the periphery of my own life, at the expense of myself.

Being a patient is like being an object. One becomes a list of test results. This experience jolted me back to a time where I seemed to be nothing much more than the result of my school grades, the clothes I wore, my table manners, or the charm of my thank you notes. All these not useless measures of something, but not of the essence of the child, the feelings, joys and fears. Today, I turn with joy and gratitude when someone turns to listen to me with their eyes as well as ears, when someone considers whether I, too, would like a cup of tea, or simply cries with empathy when I tell a sad memory.