BEYOND THE UNFILTERED NOISE OF THE WORLD

Part of the THIS IS THE MOMENT series.

Started June 17th 2019

 I was standing in the shower, a full ten months after beginning chemo, washing my hair and running my unreliable hands over the surface of my scalp, and what I felt was slippery curves and clumps of soft, slightly fuzzy hair that my shampoo-slick hands just glided over in a way that was completely foreign to anything I had every felt on my own head in the past, and I was reminded of the feeling of lambs’ wool, which was still often used to make the collars and cuffs of winter coats when I was a child—soft knots of newly grown warmth.

It was the manner in which the novelty and the foreignness of the experience coincided that instantly brought me to the fact of my cancer-grown white hair (though I’ve been colouring my whitening hair for years, it wasn’t THIS hair, which is what my body has produced under the influence of poisons shot through my system) : this baby soft, fragile, gradually thickening white hair and its inextricable connection to my cancer.

McNairn, Caroline; In a Foreign Country; Glasgow Museums; http://www.artuk.org/artworks/in-a-foreign-country-85286

Every time I step out of the shower and stare at the reflection in the mirror, I’m reminded of all of the losses of the past year; all the ways that I’ve become alien to myself. Of late, what I see and feel is premature aging, which may be a sensation common to many or all who deal with a chronic and debilitating illness. I just hadn’t ever considered it before.

I live like a person with cataracts even though what I have is irritated corneas and burning secretions from my eyes caused by chemo. I live like someone with arthritis, even though what I’m experiencing (this is a more recent symptom) is inflammation in my joints (thumbs, knees, right elbow, right hip, lower back) and muscle stiffness, probably caused by the immune therapy I’m so lucky to be receiving (this is written WITHOUT sarcasm). I live like someone in the very early stages of dementia, even though I’m actually struggling with what’s commonly known as “chemo brain”, which plays havoc with my ability to keep time straight and retain some sort of coherent relationship with the calendar, as well as remember things, people,  words and facts, that I once recalled effortlessly.

Reynolds, Alan; Sunset; Nottingham City Museums and Galleries; http://www.artuk.org/artworks/sunset-46873

Turning into someone who has become, in effect, an old woman overnight, is part of the small but daily humiliations that accompany the treatment of my cancer.

I’m being schooled by this ubiquitous disease called cancer, and by its treatment. In the early days after diagnosis, the sudden medicalization of my life gave my predicament a shape and an energy that propelled me forward. I lived by a calendar of interventions and chemo and appointments with various specialists  and scans—everything driven by an objective of…What was my objective? What was the medical team’s? I think that at first, I was just grasping at life. It was like being launched, with no warning, out of an airplane with a parachute for the first time, and hurtling towards earth, and hoping that the ground below would be flat and soft and safe—and that I wouldn’t end up broken and destroyed by the sharpness of trees or rocks or other unyielding things.

Wenzel Hablik, “Mont Blanc Sunset” (1906), oil on canvas, 96 x 96 cm (© Wenzel-Hablik-Stiftung, Itzehoe)

But somewhere in the past few months, it’s become clear to me that I now live in the company of death—with the awareness of death—almost every waking minute. This isn’t because of a morbid fascination that I have developed; it isn’t a symptom of depression or of giving up one iota of my desire to remain here, and LIVE.

It’s a side effect of my side effects, by which I mean: all of the injuries to my body caused by my treatment are the reminders that prevent me from any real escape and keep me tethered to cancer and mindful of it.

And, inexplicably, life seems to be conspiring to keep things this way. There was Rana’s recent death from cancer, which you know about. But there was also the death of Johane, a woman who was my neighbour for 38 years, who died of a debilitating disease last week. She was 62. And there is the illness (metastatic cancer), of a very close family member who is only 54, whose ongoing suffering is indescribably difficult for her and for everyone who loves her.

These have left me with depleted emotional energy and with diminished defences; these many  losses penetrating me so easily, and then staying, as though my cancer had activated an emotional magnet or dish, pulling in these harsh realities…

What is a life well lived?

How long is it? 62 years? 54? 50?

What is this force that keeps me in the room with mortality? Do these deaths lessen Death’s grip on the private me: the Michelle who lives here, in this consciousness…who is 5 and 12 and 25 and 45 and 60 and lives in all of the memories gathered, the experiences lived (and sometimes just survived) ; the Michelle who now works hard every day to construct a sense of reality in which I’m able to live and with which I’m able to make my peace?

I’m now much more affected by the pain and suffering of those around me.

My sensors are heightened.

Is this useful?

In what way can I put these insights to good use?

Should I indulge in the sadness that comes with feeling the pain of others?

I’m having difficulty distancing myself from it. How could it be otherwise? But I realize that sometimes, it is better to be compassionate and useful, than empathetic and edging close to despair.

Is it unhealthy?

Selfish?

What can come of it: a breaking down of the barrier between me and death?

The ability to live in the shadow of death or with death at arms’ reach and not feel fear?

There’s something happening to me. I’m more permeable. More absorbent. Everything in this life feels more real and more grounded. I’m not afraid of the emotions of others. I’m at ease with emotional intimacy. I want to be trusted and entrusted with the feelings and thoughts of others.

In this room, there’s no space for pretence or forced gaiety or hostility or careless behaviour.

I want to love and feel and reach out beyond the unfiltered noise of the world.

Zora J Murff, Untitled from Fade Like a Sigh

 

 

 

THE SHAPE OF TIME

Part of the THIS IS THE MOMENT series

  • My extraordinary friend Louise, who will turn seventy this summer, said to me (in French): “The thought of turning seventy, I’ve gotten used to, [it will happen in July] but then I think that the next milestone is eighty!” (she looks much younger and acts agelessly). I look at her and say: “Seventy sounds awfully good to me.” Ah. She realizes what she has just said. That’s how most of us live, isn’t it? Counting our decades before they’re hatched.
Field, Michele Elizabeth; Trees through the Seasons; Oxford University Hospitals NHS Trust; http://www.artuk.org/artworks/trees-through-the-seasons-43105
  • The list of my chemo side effects continues to develop insidiously. Lately, it’s eyes that tear and leak and burn almost all the time, causing dramatically reduced vision; joint pain all over the place. The other day, my right thumb felt like it had been sprained, and is still very sore; this happened as I walked in a parking lot, touching nothing (Ouch!). Instant injury. There’s my left knee, my right hip, my right elbow (preventing me from doing the cobra position in a sun salutation!); my lips are cracking and peeling; if I sit—the way I am now, to write—for any length of time, I can barely rise from the chair. Everything has become stiff and painful. I am the Tin Woman, like my partner in the land of Oz.

 

  • BUT (here is the loveliest of kickers): I have neuropathy in my hands and feet, which is why I’ve been taken off Oxaliplatin, as I’ve mentioned before. Probably temporarily. But what I love is what the doctors say. They say: Well, we’ll give you a good long break because otherwise the damage can become permanent.

I smile inside and out. A little, invisible balloon of hope rises from my fearful mind.  It could become permanent. You don’t say things like that to someone you know will likely be dead in 2-3 years…At least I don’t think you would. And that’s enough for me right now. They’ve given a new meaning to permanence.

Giovannetti, Luigi Pericle; March of Time I; York Museums Trust; http://www.artuk.org/artworks/march-of-time-i-8789
  • Last week, during one of the loveliest lunches I’ve ever had with my mum (who is 84), she says that of course, SHE DOES NOT WANT TO OUTLIVE ME (this is every parent’s nightmare—age has no bearing here). On the other hand, of course, as she is FULL of vitality and loves life, she wants lots more of it. I say to her that she looks just fantastic sitting across from me, and seems likely to be on track to reach well into her nineties. So we agree that we will try to leave this world as close together as possible, neither one having to live very long without the other. She seems satisfied with that. It’s a goal she can live with.
Day, Jean; Leaves, Four Seasons ; University College London Hospitals; http://www.artuk.org/artworks/leaves-four-seasons-124063
  • My son Christian and I are writing a Harlequin romance together. It was his idea, several years ago. It took us a while to get it on the rails. But oh, what fun we had thinking about it and planning it. It was an idea born well before we knew of my cancer. It was always meant to be serious fun: that is, something we would do for the joy of it, but with the wholehearted intention of having it published and earning income from it. We read some romance novels to prepare. Christian went to the Harlequin website to gather up all of their “How to” parameters. We’re more than half way in. It’s set in a place just like Hudson. It’s for real now. Not just pie-in-the-sky. We work so well together. I want to see this through to publication. I want it very much. And while he and I are busy making it happen, there is joy and lots of looking-forward-to. What I want most from this project is the doing, which keeps us close, and something more. Before I die, I want to know that Christian’s writing life is launched. I already know that he can turn out publishable books for the rest of his life—his writing voice is so distinctive, his mind a whirring generator of narrative (I don’t know how he keeps it all inside his head but that, apparently, is no problem at all)—but I want that to have begun. I want to see it and KNOW that he’s got his foot in the door..
The Cloud Man blew on our backyard trees last week (or perhaps he just kissed their tops? (Photo taken by me)
  • And then there’s Simon, and this multi-generational living project he conceived of, that took one hell of an unpredictable turn last summer when I was diagnosed just as we moved into our new home. His twin, Jeremy, lives happily in Beaconsfield with Anne, and Penelope and Graeme (we’re all goofy, over-the-top in love with them). Jeremy’s life is also enhanced by the ineffable bond he has with Simon, and by his love for Christian (and let us not forget that his mother and father also adore him). But Simon’s vision of the future included this house in Hudson, which is nothing to him if it isn’t a home.

I don’t want to die before our friend Cindy has come and converted part of the house into her studio apartment. This was always the plan. I know that time will allow Simon to create “family” in one of many possible reconfigurations that are meaningful and love-generating. But I don’t want to die before others are here with us. I don’t believe Simon is meant to live alone for any length of time whatsoever. I don’t imagine many identical twins are, but someone as gregarious as Simon? There are things I want to know,  that I want settled, and this one is important.

* * * *

Next month will mark our first anniversary here, in Hudson. This has been the year to topple all previous ones. I’m so glad that none of us is saddled with the gift of prescience.