Being a patient is one who suffers.
Having patience is having forbearance
One learns to shoulder one’s burdens. That can be painful, bring suffering.
Accepting one’s burdens and learning.
I am a porter, a portier, a traeger, carrying my burdens.
Some I should have dropped a long time ago. I did not know that I could.
Some burdens define who I am.
These I choose to keep and carry on.
I gave clothes to my daughters.
To Rachel, I gave my sweet sixteen outfit… a colorful cotton & velvet long skirt and jacket. I loved it. It was gorgeous; then I moved to a lifestyle that had no use for such a striking suit, and then I gained weight. It fit her perfectly when I gave it to her. I was delighted to have her wear it. When I lost weight and she gained weight, she gave it back to me. Well she returned the jacket, that is, and kept the skirt. The brilliant pink silk lining was wrecked, the sleeve linings were missing completely, a tear down the center back, and inexplicable holes here and there. Later when visiting her, I saw the skirt; hem coming down, a tear at the bottom, a piece dangling from a thread, the zipper partially unsown, and the waistline worn and stretched.
I insisted on taking it home to fix. She texted me repeatedly to find out when I would get it back to her. It was summertime, and did not seem a necessary clothing item for that season. Clearly, she had felt I had simply planned to take it back permanently. But I fixed the skirt, and enlarged the waistline, and gave it back to her. She needs it more than I do.
What does that outfit mean to her, and what does it mean to me? Why do I care, and why can’t I let go? All good questions, but why do I need to justify myself?
I have given Sarah clothes too. She has a very odd item, that may have fit her once. It is my father’s morningcoat, from France. The label identifies Belkinkoff en Roux Montparnasse. Why did my father have or need such a jacket? What social situations required such a formal outfit. How thin my father was! I maneuvered into it last night; it was hard but it sort of fit me. I would have no use for this classic man’s apparel in my life either. I wonder why she accepted it. The lining needs a bit of fixing; a stitch now would save many more later. I lingered over the intricate lining pattern, which I’d not ever noticed before. Sometimes, we see things only when they need some mending. Isn’t that the case!
Sarah also has my very favorite dark blue coat, from my teens years and longer. It’s missing lots of buttons now. Did she wear it? I’m sure it does not fit her now; she has gained some bulk. I miss the coat, but perhaps I miss the girl in the coat.
That girl was me, I struggle to remember, I grab at odd opportunities to interview people who “knew me when” to glean some random insight into who I once was. I kept not diaries, preferring always to live moments rather than record them. And now I don’t remember enough to really describe her… me.
I need to get started..
These days I’m not feeling strong and I am truly worried that I’m not can get things done. I set myself so many tasks and frankly feels crazy. Now, when I’m not at my best , I have to do the most important stuff. I have to collect my writings, have to put them into some order. I’d like to actually publish them and not leave it for somebody else to decide what to do. After all I have an idea how it should look.
Can’t control everything. I’m fully aware that this looks like I am trying to control things after I’m gone, but hey, I’m a designer and a producer. These are the things I do really well. But now I feel so tired, such low energy. A couple of days ago I told the four kids the latest update. There was no point waiting any longer– things were getting worse. Why wait until it’s just too dire and shocking.
One of the things we want to do is interview me and interview Ken. I have this sense that if this is the real last opportunity to do this, it has to be done right which immediately puts me into a mode of anxiety. Oh, prepare properly.
You have to aim for the good enough.
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.
I have been doing imagery work for almost a year. I used as a guide the book Reversing Cancer Through Mental Imagery, by S. Benyosef. On page 118-121 is an exercise called Knight of Armor.
By now I had done the exercise many times. And many different thoughts and feelings were experienced and some I noted in the margins of the book. But this time was very different and Ken insisted I go write it down.
“Close your eyes.”
“Imagine that you are carrying the weight of your sickness on you like a metallic armor.”
In earlier readings I saw my sickness as cancer. This time it occurred to me that it was really all the issues, problems, behaviors (mine & theirs) that have hurt me; a whole life history of stuff that I carry around like heavy armor.
“Nothing can rid you of it”
Indeed, only I can, as we shall see. Even though I am on a trek to find the “lake that cleanses everything” that sits in the Garden of Eden. But, clearly, it is not the cancer sickness that will be cleansed.
I trudge along into a valley an on a path with a cliff on one side and the other a view of the ocean.
I have always seen the cliff as rising on my left, not dropping down. Today, for no apparent reason—just to see if I could, I switched direction, with the cliff to my right. This is my life’s journey: hard places to climb or passages that are difficult to travel, but always at a distance is the ocean view, representing peaceful goals or possibilities.
Then, I am “walking on a very narrow path bordered by a wall.” Everytime I assumed the walls were on both sides of the path…of me. Over the walls sweet scents come from the trees. This time I focussed on a fact that I had noticed other times but dismissed. The walled path is piercing into a larger enclosed space, like driving through a circle on its diameter. An image comes to me of a kidney shaped garden. And then I see the map of Israel with Judea and Samaria in the shape of a kidney and the inserting path eastward aiming at Jerusalem. That is where this garden is somehow. That is where I once thought I would find my new home.
As I near the gated entrance, I am increasingly tired. “…the weight of the armor is exhausting you…difficulty breathing” (asthma). I discard my helmet. (The head of family; my father) and then my arms and chest (Larry, the first husband); and then the knees followed by the legs (the rest of my burdens: return to US, finances, 2nd marriage; Rachel’s changes and hospitalizations; pre-normal empty nest, hardships in Western MA, etc); and the boots are removed when I take hold of my life a bit and lose the extra 60 pounds I had accumulated, go into therapy with Ken.The arrival of the ovarian cancer seems to be a culmination, perhaps a call to arms (armor) or perhaps a call to stop and do some serious reckoning.
When I throw all these pieces of armor over my shoulder, as instructed, They form a body of armor on the ground behind me. The gate ahead is hard to open, like the rest of life. But, as I write this, I realize that cancer may be the gate and “if the door opens on its own (for me), go through and say ‘thank you’.” Gratitude and humility is what I prepared for through the FA program and what cancer further impressed on me.
“Describe what you see.”
Other times I saw a collage of many famous paintings of the Garden of Eden in every style, from every time. Later, I saw a blurr of green, all out of focus. This time I see a small hillock with one tree on it (like an illustration from The Little Prince by St.Exupery). Unclear vegetation of no importance at a distance.
“You are now walking on a very smooth path, looking for a body of water.”
Makes me smile, at the obvious: I went from my discarded body of armor to searching for my body of water. And the path is not smooth, but very smooth. Is that “very smooth” sailing from now on? The path circles around the little hill. On the other side I find the lake at the “junction of four rivers.” This time, they do not form an X or a cross, as I had imagined before. They come from the other side toward the center of the lake. They are facing me in a fan shape. Streams of influences perhaps?
“Dive down into the water, staying down as long as you can hold your breath.”
Three times I must descend like that. Four rivers fanned out in front of me; this delineates three spaces between them. Each river corresponds with each intake of air before the underwater descents. The last time, I go down I must “find something that is there for you. Take it and keep it.”
Each time I did the exercise I found different things. The first time it was a fountain pen (to write my story, perhaps). Then I found a water logged piece of paper; a small black spiral notebook; light weight slippers (for the next journey); and once I found nothing at all. The message that time was there is no tool outside of myself. This time, I found a shadow. I took it up with me.
“Ascend…what are you wearing now?”Always something thin and white. Once or twice, it was obviously a shroud.
“…choose a tree that appeals and sit underneath.”
There is only that one tree so I climb up and see under it. I observe all the living beings around me and then look at the object I “have brought up from the depths.” It is my shadow, in the shape of a body. Yes, it is the body of a shadow. A body of armor. A body of water. A shadow of a body. “What is the message it is telling me?” The heavy armor is gone and has left just a shadow of my past experiences. A shadow is light and I can carry that to the end. But not the heavy destructive armor; that body is important to let go of.
“Leave the garden…rest at the edge of the sea…look at the beauty of the ocean and the infinite sky.”
The garden is the sanctuary at The Center (Jerusalem). We cannot live there. Neither could Adam and Eve. The edge I go sit at is on that same road I took earlier: the cliff behind me, but the ocean view before me. And the vastness of beauty and infinity are my present “journey” which leads toward my peaceful future. This journey is not heavy nor treacherous.
Unburdened, the past hardships are only a shadow of their former selves.
“Open your eyes.”
On a dreary day…in my car…transported by Max Bruch’s violin concerto in G minor.
Mind at rest, soaring with the solo violin.
Eyes shut against the day, the present.
Heart yearning for the next note.
Voicelessly singing along and
Reaching such peacefulness.
Now…here comes exultation, hope and joy triumphantly played by each and every instrument of the orchestra…pulling me along…on and on and on
to a crescendo of ever more emphatic glory!
At last on the plateau, full-throated satisfaction.
A wistful glance back to the road traveled.
Then…rush, rush thrillingly, trilling to a huge open-armed embrace
–belonging, yes, belonging at last!
I have arrived. Eyes open. Glancing around, the public parking lot has not changed.
A bird keens in the tree tops.
A woman returns to her locked car, turns on her lights, her motor and noiselessly eases out of her spot.
It took a piece of music to refocus me. In the midst of daily errands, I reached for meaning quite by chance. I was on my way to a therapist. Life had gotten slightly complicated and I need some help to sort out priorities and feelings.
Is belonging what I need most now? Was it ever? Was it always? Certainly I have given of myself to all the communities I have joined. Even here in this small New England Polish village, I am part of town committees, I attend meetings, I speak up and I volunteer opinions and actions. They know who I am. But I am still not sure I know who they are. On the kibbutz in Israel, another small village, they learned to know who I was for the very same reasons. A hard worker, shirking no responsibility, always ready to share the burden. Where did this trait come from? How did I learn this?
I grew up in the South of France, in Buenos Aires, in the suburbs of New Jersey and in Manhattan! What an odd mix. In my families I was always the outsider, living part of the year with my mother and siblings and part of the year with my father, as his only child. Among Americans on the one hand, and among European exiles on the other. Different cultures, different (if indifferent) religions, different languages, foods, table manners, and on and on. The photo albums have me popping in and out at odd intervals. I am a visitor in both homes. In my mother’s world I was spoken to in French but they all spoke to each other in English. Moving countries meant changing schools and languages and many other expectations. I was an odd tri-lingual pre-adolescent in New Jersey, wearing nothing that my classmates had ever seen before—matching wool skirt and jackets purchased wholesale in the garment district. In America I was the Jewish bookbinder; in Israel I was the American bookbinder. In my Jerusalem neighborhood, all the Americans came from a social milieu that I had barely heard of. I feel so not part of our local Women’s Club; but I tried. I was always the new child who assumed that the new school culture was unknowable. It was the only life I ever knew.
Sometimes I wondered who I might have become had my parents never divorced and had continued living in the NYC suburb of Dobbs Ferry. I was curious, but not eager to have changed my fortunes. I am used to myself, to whom I became. I quite like her. And she, that is I, am who I am because of this odd meandering existence.
I can make myself at home anywhere. I am here now longer than I have been anywhere in my life. I belong, sort of, everywhere. Last week I spent several hours in our local senior center to use their laminating machine for a town project. Quietly, at my work, I overheard many conversations and interactions. There was a bingo game going on, someone counting money from a fundraiser, a couple of women were noisily getting lunch ready, coffee drinkers were chatting and a few immersed in newspapers…and me. I was the stranger for sure. I knew not one of my neighbors, not one. I tried to imagine myself among these people socially. It was a stretch.
I know I don’t really belong here. They would surely agree with me, if I gave them the opportunity to discover me. Not likely. I know that we are each a world unto ourselves. I am working these days on belonging to myself.
At the base of it all are my feet.
They hold the whole human endeavor. They carry the burdens of human life. They see us through long waits, hurried errands, pregnancies, striding runs, overweight years, posing just so, standing, and shifting back and forth….and waiting and waiting.
I only think of them when they hurt and when I was young, I don’t remember them hurting…except perhaps when I bought a pair of shoes that I thought were so pretty. Two days later I was sorry, but I didn’t know. I thought it was that way for everyone. I assumed that everyone had the same problem. Anyway, we girls kept buying pretty shoes… and felt just like everyone else or momentarily special, perhaps a little better than everyone else.
Any sensible child would have had maybe 1. 2 or maybe even 3 pairs of shoes at the bottom of the closet. I think my collection grew larger. It would have been useful to have an adult or slightly older friend say to me: Do you really need those?”
And then I went to college and probably dragged all my shoes with me. And then I got married and certainly dragged all my shoes with me. Along the way I collected more. And of those a certain percentage never quite fit.
I was in my early 20s then. Sneakers were only used in sports and I was not sporty.
We moved to Israel and then, I and my daughters moved to the kibbutz. The shoes came of course, with everything else I brought with me. That was the time and place when I wore espadrilles. Those Mediterranean peasant shoes are not known for giving much support. I loved them. I wore them all the time and everywhere and they went with nearly everything I wore. What does one wear on a kibbutz, after all.
When did the foot pain begin? It’s not the kind of thing I would’ve put in my diary. And I didn’t have a diary anyway. When do things start to go wrong in our bodies? We don’t keep track of that. There comes a time, and I think I am there now, when we get old and when we have so many ailments or issues that we have to write it down. We need to be able to report to a doctor. How do I remember that my bowels were off the other day…Oh, it was when Jonathan came to dinner, so it must have been Monday night.
I feel I am shifting my weight back and forth between my left and right foot. I’m hedging. I am digressing.
I think it must have been some time in my 50s when the pain in my feet became disruptive enough that I started thinking about going to see a podiatrist. But it was not until a decade later that I actually made an appointment and went. Another world, another specialty. I felt had gone to some voodoo doctor. I don’t know why I say that exactly. He must have had a medical degree, but I felt like I was dealing with somebody who is more like a shoemaker. Shoemaker’s are real healers. Oh, that was a pun and here is another fitting one: shoemakers fix souls. Surely if “cleanliness is next to godliness,” then well-fitted shoes make for contented souls.
I was a shoemaker for awhile on the kibbutz. Rather, I was a shoe repair person. Looking for a place to store all my no-longer-useful-bookbinding-tools, I was steered to the former shoemaker’s atelier. He had died and shoes were now collected and brought to a local town for repairs. The tools seemed similar and I volunteered for the task. They laughed at the administrative offices but relented when someone recalled that a kibbutz down the road had a woman shoemaker. Gender was the issue! I took a class or two and restarted the shoe repair industry on my kibbutz of 800 members.
The podiatrist has interesting tools: heavy-duty clippers and scissors, an electric dremel, and tiny scalpels. They sit at my feet on a low stool like the shoe salesmen of yesteryear. More like a service industry then a medical specialty.
My first podiatrist died shortly after my first visit. The second one was offensively like a salesman pushing some surgery as if were the latest fashion. The third one lost me half way through his plans for orthopedic inserts when I had to deal with cancer surgery and chemotherapy instead. The forth one was so awful, I actually left the office in mid-session. Recently, I cautiously but with serious curiosity accompanied my husband to the free podiatrist available through our town’s Senior Center. Out came the large hand clippers, the tiny scalpel, the dremel. He did his work on my husband’s feet. He seemed okay, so I allowed him to look at my feet and even do a little treatment. The foot stand he used to prop our feet was made of wood and old brown leather. It might have looked at ease in an old shoe store or even a shoemaker’s shop. He did not wear a white medical jacket; he might have just been some handy guy who came in off the street. I went home and looked carefully at his work. Not so impressive close up; not sure that I will return…not now. Maybe when I can’t take care of myself…when I have lost my independence.
I cut my own hair and have since my early 20s. I do my own pedicures on the bathroom sink. I have learned how to deal with painful ingrown toe nails and all the other indignities of aging feet. Often, as I prop my foot up on the edge of the sink, I wonder how long I will be able to do this. What happens when I can’t bend so well, or see so well, or handle the clippers so well? Well, there is the Senior Center guy.
In truth my first podiatrist was my father. When I was little, he cut my toenails. He was very good at these kinds of things. He took superb care of himself. I remember accompanying him to his barber at The St. Regis Hotel in Manhattan. I can still see the bent over woman on a stool at his side giving him a manicure. I assume he got a pedicure, too. He supervised my toilette, making sure I was always well-groomed. I groomed my children too, but I, personally, never went for pedicures, manicures, or hair cuts.
Since the chemotherapy, I have peripheral neuropathy. I had never heard of such a thing. Since 2014, I have learned to live with it. The harsh chemicals that kill cancer cells affect negatively the nerve endings in the peripheral parts of the body. Not everyone experiences this, just as not everyone loses all their hair or fingernails and a few other unpleasant things. My feet had to relearn what the floor feels like, how to perceive what part of the foot I am leaning mostly on, whether my body is properly balanced over my two feet. At first it was like walking on massive cotton balls. Now it is my new normal. I learned that coldness will invade my feet and stubbornly not leave; they will be so painful in a whole new way I had never conceived of. Like some caricature of an old person, I work at keeping my feet warm now. Many people with diabetes suffer this; and goodness, there are plenty of people—old and not so old—with whom I can commiserate and exchange anecdotes.
Today I went for a treatment called reflexology. The practitioner fits somewhere between a masseuse and a podiatrist. I have no idea how it is viewed in the medical world and hardly care. If the medical profession can endorse what I have seen in the world of podiatry, I don’t value their judgments on whatever reflexology is or isn’t. It was wonderful. She spent a long time “thumb walking” up the bottoms of my feet, massaging and pressing every part of every toe. When I left with my two sets of socks and my heavy boots, I could feel—not feet, but rather toes—ten of them. Asked later how I felt, I quipped: like multiple orgasms in my shoes.
I don’t buy shoes that pinch or deform the foot anymore. That damage has been done. I live with it full-time. My shoes are now mostly sensible. The few high heel shoes I have kept are stored away in a little-used closet. I keep them just to be sure that I have something to wear with those dresses that do’t go with espadrilles, clogs, sneakers or boots.
I found myself nearly crying in the naturopath’s office. She had just complimented me about the amount of important things I had done in life. My response was sudden, sharp and certainly strange. Even I thought that, as I observed the scene then and in retrospect. “No,” I insisted. “I have not accomplished anything; not the architecture career I started…the organizations I invented have all three disappeared… two bad husband choices…never rich enough to be really helpful to others…and my visual skills…no significant “body of work.” In one fell swoop I demolished myself. Immediately, I felt foolish and soiled. But when I reached the car to go home, I knew that I believed these criticisms and I was sad and I needed to think about this state of mind.
A cancer diagnosis can sharpen one’s wits; can refocus the eyes on the clock, the calendar…what is left undone, to do, to fix. The measure of one’s life is checked repeatedly and sometimes I found myself wanting. Regrets can spoil any good day if I let them in. My dreams are full of anxiety of tasks that must be done. I wake at three in the morning and a roiling list of obligations keeps me awake for hours.
Today, I came back from the hospital not having had the drainage from around my lungs that had been scheduled. It was my decision, but the whole experience was wearing. In the car I was beyond exhausted. I rested with my eyes closed while Ken went into the supermarket. And on the way home I fell asleep and when I got home I went back to sleep—in my bed this time. When I woke, I saw clearly. Three stories came to me.
The Story of Bill, the Nurse:
The nurse who greeted us today was a stocky guy with an open face and ready smile. He escorted us to one of the examining/procedure rooms. Ken sat in the only chair. I stood and paced and then sat on the edge of the bed. Bill stood too, but took his seat next to me—right next to me and swung the rolling computer screen in front of us to check on my file. Side by side is so friendly, even kindly and cozy—not my usual experience of nurses. Eventually, we got to “How are your bowel movements?” We have fun being silly and serious and even flip with this lowly topic, when suddenly, he scrambles to leave the room. Without missing a beat, I joke about his being very impressionable. He laughs and we return the laughter. When he comes back, he runs down his list of questions. “Did you store your own blood for a transfusion?” “No,” I say confused. “I don’t think I ever had a transfusion and I don’t remember ever having had a discussion of storing my blood.” “Oh, it must be an error,” Bill says casually as he deletes that from my file. “There are probably more,” I volunteer. We were enjoying the time with Nurse Bill. At some point, I ask “Don’t you need to see my ID?” He chuckles and acquiesces as I hand him my driver’s license. Then, he says unexpectedly, as he looks down at my ID in his hands, “I hope you are not the jealous kind, Ken, but your wife is beautiful. Just look at those cheek bones!” More laughter.
We talked of many things. His daughter who is studying textiles in Maine; and the older one who is starting off her career in museums at the Quadrangle in Springfield. It went quickly from subject to subject—some medical and some social. We were waiting for Dr. Grassi. There was a schedule mix up and it was the day before Thanksgiving. Buying time perhaps, he notices my sweater, says that his daughter would find that pattern interesting. “I made that!” I say triumphantly and explain my salvaging efforts—cashmere with holes, camouflaged with needle felting. He is animatedly interested, explaining the custom in Japan of letting repairs show, like a silver seam in a broken vase. We are baffled by the unexpected direction of the conversation.. I have a poem about just this topic. I promise myself to bring it to him on Monday when I return for chemo.
Ken, reflexively, hands me his business card, to which I add my name on the reverse and invite Bill to bring his daughter to visit me to talk textiles—indeed both his daughters—art and textiles.
At one point Bill and others are looking for Dr. Grassi. Not in his office, not answering his phone. I suggest he may be in ‘the smallest room of the house.’ Bill finishes the quote for me “I am sitting in the smallest room of my house. I have your letter before me, Sir. In a moment it will be behind me!” he identifies it as Voltaire’s. Later I search and find it ascribed to a variety of witty European writers. But in that moment, Ken and I stare at this phenom who is my nurse…. who exists down here in the bowels of the local hospital?
When we leave, he actually escorts us to the elevator…a long, long walk…as if he were walking us to his front door after a lovely evening visiting his home. He held the elevator door open with his body and as I walked in he gave me an ample hug. I gratefully accepted.
The Story of Levi, the Moldavian:
Ken told me that yesterday a man he barely remembered rang our doorbell. It was clear the man wanted to see me, not Ken. He was Levi, the Moldavian who had worked for UPS helping during the winter rush at least 5 years ago. I needed prodding to remember him. But, clearly the Moldavian remembered me. He kept looking over Ken’s shoulder to see if I was there. I had made a connection for him with the only other Romanian speaker I know. We had spoken of life and immigration and our own parents’ stories. He remembered our kindness and wondered oddly if we always are kind to strangers? Would Ken help him, he quizzed strangely…. by lending him money? giving him a car?…and a few other less remarkable questions. He is a devote Evangelical Christian and wanted to know if we are so generous because we are Jews. Incredulous, I asked Ken to repeat this.
He had returned with one of his three children, his American contribution, but perhaps mostly to check on us to see if we were real and still there… the way in the late 1980’s I used to check that a file was really saved when I hit the computer’s ‘Save’ button… the way we scan a bookshelf with our fingertips to make sure a favorite title is still there and briefly reabsorb its tale. Ken said no to the car but gave him a book for the 3-year-old standing patiently by his side. Perhaps he had just come to show us his progeny.
Ken awkwardly waited for him to say goodbye. The man lingered glancing again inside. Sensing the unfinished quality of the visit, Ken asked for his phone number, assuming he wanted me to call him. I don’t know where that number is now. Unfinished will remain unfinished.
The Story of Eloise:
A few days ago, we were at the supermarket in Northampton…each of us on our own, collecting items. I was in search of Quinine water walking along the large back aisle, the one with dairy, meat and fish. I was feeling good and in a happy mood. Wrapped in my wool shawl, I had tossed one side back over my left shoulder. A woman some 10 feet away from me, walking toward me, says suddenly: “You look fabulous!”
I don’t know her; she doesn’t know me. I smile and say “thank you.” We stop and revolve around each other and start a lighthearted conversation that focuses very quickly on her name, Eloise, and the children’s book Eloise at the Plaza. We each claim it as one of our favorites, chatting about our favorite scenes and special pages. I ask what the nanny’s name was and we agree that it was just Nanny.
There is no agenda. She blurted out a compliment and I responded kindly and we each felt—she in particular—a momentary kinship. She asked if she could hug me. We did; two strangers hugged near the packaged ground beef. We chatted more. I told her I had a favorite book with my name in the title too: Impunity Jane. It’s about a little doll stuck for generations in a dollhouse until a boy steals her and she gets a life of wild adventure. I asked her son’s age. Twelve, she answers. I acknowledge and say it might work for him. He’s a boy, she emphasizes. It might delight him, I emphasize. And then Eloise asks if we might stay in touch…
Two years ago, I might have agreed and exchanged phone numbers. And with that either start a whole new line of friendship or something else that verges on an obligation. Today I thought quickly and realized I did not have the time or energy to include her in my story any more than this charming encounter. I smiled, paused, and took my prerogative of elder.
“Could you be satisfied with just this?” I asked gently, still smiling. She nodded yes, and took another hug.
We parted down the aisle in opposite directions. I looked at her figure as she walked. Her head turned back to look at me. Awhile later, at the cash register, Eloise pops her face in front of mine and blurts out “I forgot to ask your name!”
“Impunity Jane,” I smiled back.
“Oh yes,” she said and she was gone.
Three messengers came to remind me of my lifetime full of meaningful human interactions. I smiled gratefully. I could be satisfied with just this.
Ken and I spent the morning sharing readings and ideas.
He cut out an article to read about an Australian woman writing about her grandmother who was a refugee from wartime Europe in 1939… and of being the guardian of her grandmother’s jewelry and archives. Burglars got the jewelry. The archives remain.
I too have archives and artifacts that I am responsible for. I am struck with the dilemma of being the hinge generation. In her case, the generation that experienced the Holocaust are nearly gone. This woman in the article has inherited an imperative to represent this past, to prevent this history from crystallizing into myth. How does one do that?
I think, oddly, about how making bread or a holiday recipe is a way to connect with family history. My mother taught me to do this in such a manner and her mother taught her, etc. Also, at the Passover Seder we tell the story of the Exodus from Egypt and we say “our fathers told us this.” And, of course, their fathers told them, etc.
I then read to Ken a passage from a book I was reading about the power of liminal moments. These threshold moments are soul moments, the author says. I think he means that they are crucial to who we become. The door opens; the door closes; the hinge is both here and there and in neither place. It facilitates that threshold moment. Isn’t that we we are talking about?
And suddenly, out of nowhere, a phrase comes to mind: “C’est ridicule.”
This was my father’s judgmental catch phrase. Sometimes it was aimed outwards at life’s clearly silly, ridiculous events. But sometimes it was aimed at me.
Ken and I went on talking and sharing ideas. They flowed off my tongue. I felt the ease with which they formed themselves into cogent sentences as I heard myself speak. Why, I even inspired myself! Then I knew what he would say: “Go write these thoughts down. Take a moment.”
But, I knew I could not. I explained that speaking rather than writing brings out something…like the creative tension of being onstage and having to produce sound in a composed and persuasive manner. The instant, the very moment of reacting with words, to whatever is being said, read or presented, is potent… and then lost.
I added that there are two levels I can discern.
One, is to have an insight and to think: “Wow, that was really sharp, interesting, and even useful.”
And, two, which I hesitate to share with anyone, is that there is a secret place in me that wishes for a larger audience–perhaps to be able to help others with my experience and insights… or less humbly, to be known as someone with certain …je ne s’ais quoi… wisdom?
Ah ha, this must be where “C’est ridicule” comes in.
I can’t seem to get from the deep, interesting conversation to placing those same ideas on paper. Why is that threshold, that liminal moment so hard to cross? Enforced modesty or humility has its price. Don’t be ridiculous, Jane. “They all know better, are smarter, are well-known…who are you to speak at all?” This old message took it’s toll. Way back in high school, in college and even later, my knees would visibly, and even audibly shake as I waited my turn to ask a question in public. Time and repeated experience let me observe that my questions were valued, useful, even hoped for.
But, here I am unable to recreate on paper what flowed from my brain to my lips just an hour ago.
I know, it’s enough that I had the thought. The thinking of the thought is enough, isn’t it? Ken heard me, and importantly, I heard me. Speaking aloud is so definitive. Thinking can be so amorphous. Forming words, forming sentences… syntax has a force that is underestimated by everyone. But when I speak, I can see whether my words have reached their mark, have changed a mind, have struck a note. Who even thinks about what I just wrote?
And now, the years have collected and I sense how my words need space on paper to be recorded and read later. We all are the hinge generation. Only we can transmit what we “know” or have heard from earlier generations. If I have something to share, it will have to be on paper, because my time is… well, not timeless. I had forgotten. No, I had never even thought of that. I will not hear my voice in future years—not the actual voice. It will be someone else’s voice I do not hear. It will be in the voice of the reader. And there is a strange, strange thought.
I will have to write about it, of course.