THE NEW NORMAL

Part of the THIS IS THE MOMENT series

August 6th, 2019

I was told last week about someone (to whom I have no direct tie) who has recently received a diagnosis of lung cancer. Those last two words usually make my heart drop, but she was told that her cancer appears to be localized—that it doesn’t seem to have spread. What good luck wrapped up in her misfortune! She was put on a protocol of chemotherapy that requires only that she take a pill a day, at home, for the rest of her life.

To me, this is the stuff that science-fiction is made of. My understanding is that she was told that her treatment should be sufficient to allow her to live for a long time. This seems like magic. May her medical team be correct!

Shackleton, William; Wings of Silence; Leamington Spa Art Gallery & Museum; http://www.artuk.org/artworks/wings-of-silence-54462

But then the person telling me this story said that she was having a terrible time. That the daily pill was making her sick, causing nausea and diarrhea. That she was depressed. Scared. Not managing. That she had said to one of her two children: This is the new normal, and I don’t know if I can bear it (or something very close to that).

The trusted person sharing this news with me wanted to know if I had any ideas about how to help her, because, though she lives here, in Montreal, her two grown daughters live out of province—one, thousands of miles away—and this mother of two is also divorced. She is alone a lot of the time, when she’s not at work.

The new normal. Three words that say so much. Three words that every human being who has received any kind of devastating news about their health (or, I would argue, about the health of a precious loved one) learns are both literally true and dismally euphemistic.

What this woman is trying to describe IS different than great upheavals such as being forced to move away from a place one considers home; or traumatic events such as a car accident, or the loss of a job…All of which can require tremendous adjustments and adaptation and cause immeasurable stress. But all of which leave their victims with a sense of still undefined horizons.

But this woman, this cancer patient, is referring to the feeling of having her existence hijacked overnight and waking up to a life in which she must face death every day. She’s lost sight of the horizon. Her goal is stark: to survive. The means to achieve it: to swallow every 24 hours a modern poison so strong, even death shuns it…at least for a while.

Osborne, Jeannine; Cage; University of Dundee Fine Art Collections; http://www.artuk.org/artworks/cage-91199

1 pill/day = life. This is the equation. These are the terms of survival.

If this is the new normal, then I don’t know if I can bear it.

Ross, William A.; Segregation Cell; Galleries of Justice; http://www.artuk.org/artworks/segregation-cell-46307

Of course, at first, upon hearing about her, as far as I was concerned, she’d won the cancer lottery: one pill a day, minimal hospital visits. But the truth is, every time she takes that pill, she thinks of cancer and of death. And, it seems, every time she takes a pill, it makes her feel sick. I imagine, too, that it makes her feel vulnerable, and frightened, and alienated from her own body. And that her sense of the future has begun melting away, leaving in front of her a sparse, barren-looking landscape.

In this way, she reminds me of another cancer patient, a beautiful New Zealander who has lived most of her adult life in Sweden, and who began writing to me when she stumbled upon THIS IS THE MOMENT online. She reached out to me—she chose to make contact. And all I think she really wanted from this, at first, was to hold a virtual hand. To feel less alone but also, to feel kinship. She was so brave to do this. She wrote (and her words have stayed with me—they’re part of me now): “I still don’t know how not to be afraid”. I believe that I loved her from that moment.

I want to tell the woman struggling with the abnormality of her new normal that one branch of medicine that oncology has made huge progress in is the management of side effects, and that there’s no reason for her to be feeling so sick all the time—and that she needs to insist upon finding a specialist who can help her manage these debilitating symptoms of poisoning (and not to discount the therapeutic effects of medical marijuana).

I was told that she is someone who has always taken care of everyone around her. I want to tell her that her new normal will have to include arrows of caring and helping that come from the outside and work their way towards her. That she has to love herself better.

And then, I want her to find a way to plant a garden. It can be filled with plants, flowers and trees. It can be filled with friends, neighbours and family members. It can be filled with acquaintances newly made through activities in her community. It can be vital energy that grows in her workplace and helps her to feel useful and…”normal”. But she needs to grow her life till the daily pill is an afterthought.

It isn’t time to dig a hole and shrink within it.

Ward, Martin Theodore; Two Fox Terriers in a Landscape; York Museums Trust; http://www.artuk.org/artworks/two-fox-terriers-in-a-landscape-8174

I’m fortunate. I have people to drag me out of that hole—one that even writing can open up around me. They bring me to my grandchildren, friends, family and they bring the latter to me—and I try to remind myself, afterwards, of the tingling feeling of human connection and love that I surfed on for hours and days afterwards—and remember, too, not to give in to reflex behaviours.

McLean, John; Catalan Blue; University of St Andrews; http://www.artuk.org/artworks/catalan-blue-125588

 

 

 

THE PERSON INSIDE

My son Christian’s life as an emerging actor has already taken him to places I would never dare to explore. One of these is the McGill Simulation Centre, which is an integral part of the medical education of many health practitioners in Montreal. He works there part-time.

Sometimes, Christian’s only job is to offer up almost every inch of his body so that med students can learn ultrasound techniques. At others, the full range of his acting skills is tested, as he works with other actors to bring to life scenarios for young student MDs and even seasoned practitioners, simulating situations that are designed to test the maturity, knowledge, technique, resourcefulness, empathy, interpersonal skills and even just plain resolve of the caregivers.

The McGill Simulation Centre
The McGill Simulation Centre

Listening to his stories has made me realize how difficult medical training is and how much is expected of the students who are often only in their early twenties. It’s helped me to understand how much thought is put into the training of physicians, nurses, occupational therapists and everyone else who passes through there, and helped me to see that acting at its purest is the art of compassion.

 

Guy, Alexander; Crib; Glasgow Museums; http://www.artuk.org/artworks/crib-84339
Guy, Alexander; Crib; Glasgow Museums; http://www.artuk.org/artworks/crib-84339

Last week, Christian was given his biggest challenge yet. He was asked to play the role of a young adult with cerebral palsy whose symptoms include spastic diplegia and spastic dysarthria. In this especially long and multi-scene scenario, his character, Pat, is fighting to maintain an independent life in the face of increasing pressure to place him in institutional care.

A few days into his preparation, I asked Christian if he could show me how he was coming along with his character. In seconds, Christian transformed himself right before my eyes. His body shifted until it had assumed a strange, distorted angle on the couch. His head twisted backward in a way that exposed his neck and made his chin protrude oddly, as though pulled leftward by a painful force and constraining him to look at his interlocutor from an obtuse angle.

Thomas, Joseph Henry; Representing Bodily Pain from the Passion; Merthyr Tydfil Leisure Trust; http://www.artuk.org/artworks/representing-bodily-pain-from-the-passion-153526
Thomas, Joseph Henry; Representing Bodily Pain from the Passion; Merthyr Tydfil Leisure Trust

And then he began speaking. And there was no more Christian. Everything that makes Christian himself had been stripped away and what was left was a thin, monotone and laboured voice, struggling to express itself. Every word seemed to come at a cost to him. Only his eyes were steady. And distressing.

He didn’t make me uncomfortable or embarrassed: he shocked me. Being with him and paying attention to what he was saying, I realized that despite the clarity and intelligence of the thoughts he was expressing, my own mind wanted to reduce him to so much less than he was.

And it became painful to watch my son this way. And it made me cringe, because I know, now, in a way that I didn’t before, what the suffering of this person Christian had briefly become must be. And the struggle. And the injustice of being locked inside a body that cannot come close to expressing the expanse and the dignity of the person inside.

And the vulnerability.

Carriere, Eugene; Maternity (Suffering); Amgueddfa Cymru - National Museum Wales; http://www.artuk.org/artworks/maternity-suffering-160108
Carriere, Eugene; Maternity (Suffering); Amgueddfa Cymru – National Museum Wales

When he came home after his performances that day, Christian told me that he knew that if Pat had any chance of avoiding institutionalisation, that he would have to make every health professional in the scenario like him—fall for him—and begin to root for him.

This is beautiful work.

Every time Christian becomes Pat, even for just a flash, my eyes well up. He does it because he knows he’ll be playing him again soon and he wants to keep him vital and true. And because he cares about him.

This all coincided with a period of sickness that rolled like a wave through my family. One of my sons had fever for three days, recovered for a week and has just relapsed this weekend. His twin was also intermittently feverish and eventually wound up with bronchitis, while Penelope and Graeme, his children, were treated for tonsillitis, otitis and bronchitis. Then it was my turn. Two weeks in, I’m still coughing, but at least my strength has returned.

Until this recent family epidemic, I hadn’t been ill for several years. Sick with fever last weekend and feeling weak and wobbly, I felt vulnerable and diminished and a bit scared. I couldn’t be sure that I’d be able to work the following week. I couldn’t be sure I wasn’t incubating pneumonia. I couldn’t know for sure when I’d be able to go get groceries, or clean the house or do any of the mundane things that make up daily life.

All this brought about by a simple virus. Everything happening out in the world took a back seat to the necessity of recovery. To bringing my body’s affliction to an end.

Sims, Charles; My Pain beneath Thy Sheltering Hand; Bethlem Museum of the Mind; http://www.artuk.org/artworks/my-pain-beneath-thy-sheltering-hand-192943
Sims, Charles; My Pain beneath Thy Sheltering Hand; Bethlem Museum of the Mind

These past few weeks, I’ve been schooled by life.

Actually, I believe that this should be a daily occurrence, as constant as sunrises and sunsets. Every day should be about gathering in more learning and seeing more clearly. But there’s something about human consciousness that’s flighty and inconstant and it causes us, me, to check out or else be diverted.

At the same time, reliant as I am on the stream of information pouring into my life through the mushrooming screens that have become my most used windows on the world, I’m not growing wiser. My representations of life are hardening around ideas and actions that test the strength of my connections with the world, that wipe away understanding and compassion, and fuel fearful, anxious feelings.

Recently, I’ve felt more like a greyhound on a track than a sentient, mature woman.

And then there was Christian and Pat.

I marinate every day in news about wars, walls and the billions in currency it takes to make each happen; about mass migrations and refugees and camps on almost every continent that have become lawless dead ends where violence and starvation have set up permanent residence; about immigrants, both legal and illegal and about how, for some, living off the radar without status is the brightest option; about national greatness and sovereign borders which seem to depend more and more on turning inward and away. About Others. Aliens. About Them and Us. More recently, about white-nationalism and just this week, an anti-egalitarian, anti-democracy movement skittering behind the scenes and referred to as Neoreaction or NRx.

 

Currie, Ken; The Troubled City; National Galleries of Scotland; http://www.artuk.org/artworks/the-troubled-city-211226
Currie, Ken; The Troubled City; National Galleries of Scotland

It’s a swirling vortex of what’s worse about us. Its clamour is drowning out the calls of our better natures. It’s smothering our compassion with darkness. It’s making us blind.

I think that our civilisation needs retraining. I think serious intervention is required to help us see what’s behind our outer shells, to understand every individual’s struggle, and to embrace the expanse and the dignity of the person inside each one of us.

I think it needs its own simulation centre.

Cauchi, Carmel; The Touch of Comfort; George Eliot Hospital Chapel; http://www.artuk.org/artworks/the-touch-of-comfort-55804
Cauchi, Carmel; The Touch of Comfort; George Eliot Hospital Chapel