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.