Printer FriendlyThe following lecture was presented by Mark Levine on Thursday, April 26, 2001, at a series entitled: “If This Were The Last Lecture I Would Give, What Would I Say?” organized by the Multi-faith Council of the University of Massachusetts Lowell.
Please note: The following two vignettes were read in their entirety at the Last Lecture. Mark Levine has kindly given permission for their reproduction here.
The chemotherapy salon; intimations of immortality
My story stream has run dry lately, perhaps as I get further from the more blunt experience of sickness; I asked a first cousin for a suggestion for a topic. He thought about it a few days and then suggested that I might present the Hematology/Oncology clinic at the Beth Israel, with its blend of private and public life paraded before a group of patients. He has accompanied me before for my retuxan infusion and we are due for my final treatment of a series this Thursday.
Let me take you there early in the day, when the large L-shaped lounge room seems to be turned inward, curtains drawn around each sitting station. Behind the curtains, a chair is contemplating a day with a patient. I draw the curtains at a favorite location. For me, it is nearer the wall that is a window, to grab the light and a reminder of the world outside (when I am cold from lowered resistance, I ask for a blanket); others might nestle nearer the kitchen or the nurses' station. Once I lay in the adjacent private room on the bed; I was in bad shape that day. Curtains all the way open or partly closed? How do I share myself? This is a moment of anticipating being cared for in a community of those similarly being cared for. I have spent well over one hundred hours in these chairs, in this room.
My cousin will accompany me this week for my last dose of retuxan, which should complete my experimental protocol. He considers coming for my retuxan series his familial duty. It is an occasionally risky procedure and besides: "Don't you see everyone with their family here? to come alone is not right." Included in a Cambridge personna is the belief that a book or a doze is as appropriate a companion as a family member, but I easily accede. And (good older cousin that he is) he remembers being a comfort while I had
rigors during my first infusion, when I shook memorably and disconcertingly, holding his arm. And love may provide the bonding of the room.
About thirty adjustable reclining chairs, reminiscent of the barber shop or chaises on the deck of a great ocean liner, spaced in a row about ten feet apart, some facing one another. The infusion area set-ups are identical: there is an IV pole with pump attached and a white medicine stand containing packages of gauze and surgical gloves, IV catheters and related whatnot. A television set hangs, ready to snatch one to oblivion. The chairs and those of one's visitors may be enclosed within the curtains, which move on ceiling runners; some privacy is possible.
Yet, in the room, many private events occur in front of strangers: reactions to medication, discussions regarding symptoms, anticipations, fears: how (or when) will my hair fall out? what is my white count, my platelet count; what are my choices of treatment? what are my chances? Sounds penetrate nearby stations: doctors with booming voices, the continuing wonderful exuberance of nurses which occasionally gives the clinic a beach club atmosphere, television sets emanating soap operas or news events. Sharing sometimes includes the tube, e.g., of the Supreme Court decision on the Florida vote count, or of Wimbledon or Forest Hills tourneys. Some days, I have running discussions with the nursing staff. When I went for retuxan in early July, my regular nurse's teenage daughters were offered berths at tennis camp by a coach who lived next door to her. Discussing Wimbledon as my Rituxan infused was a diversion and helped support a nurse who was learning to converse with tennis neophytes.
Doctors appear and case conferences suddenly happen; then, examinations retire behind closed curtains. When they open again, the community is restored. Checking medications requires a team of two nurses (there have been mistakes) and provides a brief sense of being protected between nurses. The ten or twelve nurses in the room rush back and forth, gather occasionally in clumps to consult or gossip with one another or to anoint a patient with an IV or a regulation of medication. In my delirium, I then see these nurses as spiritual, as when religious sisters performed these tasks in past days.
There is excitement in the room, theater as well as raw nature. Chemo and retuxan require that nurses perform costume changes into yellow protective gowns, then back into whites. The constant whooping of greetings and sharings is also like some great flocks of birds, energizing with every flutter, every rising and flowing. The nurses are the bubbles in the elixir of being helped.
Here are my wonderings: Should we patients be together like this and not in private settings? Clearly something large is gained in this community. (Finally) who would have thought that a group of people who passively share an experience of having an IV placed in their arm and medication poured into their blood, and then are whirled together and brought to a party of the spirit, can arrive at a form of active transcendence? Finally, the metaphor is of the maternal and of our birth.
May I risk being a pedant for a moment? Sharing does not necessarily create a community consciousness, says Jean Paul Sartre. As an example of communities in consciousness but not in action, he offers people listening to the same lecture on the radio, listeners who do not know each other, but nonetheless share the experience. Then, those at a bus stop during rush hour, sharing the experience of hoping to get on (not everyone will, in his example). People are in conflict in this sharing experience, not acting in concert. In the clinic room, we are all individually getting what we each require. But something more as well.
Sartre's model for getting beyond the alienation of separate experiencing is the making of the French Revolution. On July 14th, 1789 (so he imagines), the royal dragoons come out to disperse the Parisian working class crowd and are confronted by one, then two, then three people who resist, who say "stop" to their colleagues. Each individual in the crowd at that moment recognizes a common need, internalizes the group consciousness. They become a group working toward a common purpose, a groupe en fusion. I learned once doing my thesis how our community crime watch came together in the early 1980's, performed acts of neighborliness and caring that made us feel good about our section of town, helped us rise above our dailyness. I think the model works here, too: we patients are uplifted in this room, not because we hope from our day's visit to live much longer (for some that may be realistically not so), but because we are together, bound together.
A word about the nurses. The spark for the fused community is provided by them. They not only tend to the subleties of treatment, but also make the room whole. Their personal and positive greetings and effusive supportings, their neighborliness, echo regularly throughout, as if they were hosting us at a celebration. With that stimulus, we infusees are helped to become an effective group, together in both survivorship and victimhood; often facing serious physical threat, we are nonethless elevated and helped to focus on the significance of our lives.
Mark D. Levine, 2000
Tomatoes and Primacy
Is the essence of tomato more intense in the first or the most recent tomato? I don't remember my earliest childhood experience or tomato, although I think it was probably sensual, the flavor reaching out to my baby taste buds. My life can probably be measured in fresh tomatoes sliced, brushed lightly with lemon and oil, Italian, French, Balsamic or no dressing. Today, equipped with new stem cells and a laisse passer, I ended the long summer of safety in which nothing fresh was permitted. The earth has become an enemy, filled with bacteria waiting to do me in.
For the several weeks since I have been out of the BI, for the last of the 42 days since my stem cells were replaced, in disciplined fashion, I have passed those red globes: looked away as if it did not matter as I passed my own homegrown tomatoes in the backyard and pretended that they were not there. They presented blossoms for some time and past the usual maturing period, green: the wet summer had not encouraged them. Others became mopey with the slow season; I found myself taking some delight. None of us could have tomatoes from our gardens. For two weeks, red balls of warmth, projected like Grandma Moses primitive agriculture. Then they blow, two days before a projected frost may end it all, I have feasted on the succulent fruit.
Today, that state of stimulus deprivation and the rationalization "oh! I haven't noticed!" is suddenly over. A glance at my blood counts, a review of the return of the invisible immune system, (known by inference?) a wave of the Oncologist's wand and magically: in came tomatoes, zucchini and mushrooms, in came grapefruit and cantaloupe, in came lemon ,and even yogurt, full of bacteria, but now acceptable. I felt privileged to be on line at the Cambridge Food Coop.
I found a wonderful full one, then a second. I sliced in chunks, then sprinkled on olive oil, then Balsamic vinegar, then moved in.
In the first swallow, my life returned.
Mark D. Levine, 2001
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At the time of his presentation, Mark Levine was recently retired as director of the Office of Community Service, University of Massachusetts Lowell.