Accepting Illness

This is a talk I gave to a Unitarian congregation in April 2017

The school of illness has taught me much about acceptance. As many of you know I have two kinds of cancer plus kidney disease & anemia. I am currently receiving radiation treatment for Cancer #2, breast cancer. I have had to find ways of navigating the changes all this disease and disability has brought to my life. There is a full curriculum in this school. Acceptance of the body, of limitations in the world, of time and of change.

Jan 21, 2015. Those of us with these serious, life threatening diseases all have our diagnosis dates firmly memorized. But for some of us, myself included, the time leading up to diagnosis was a time of inarticulate chaos. I had known for a couple of years that something was wrong, but I somehow didn’t have the language to even name what I was experiencing. I didn’t quite know what I would say was wrong if I went to the doctor. I vaguely thought that the deterioration I began to feel was related to an old foot injury and the embrace of middle age.

It was a June day in my art studio a few years earlier. A moment arrived when I could no longer keep out the overwhelming fear and worry that had been nibbling at the edges of consciousness. I doubled over and began to sob and sob. On some profoundly deep level I knew that something was very wrong. I could feel that I was never again going to do the more strenuous physical activities I loved like hiking in the mountains or portaging canoes through the wilderness. I knew I was entering a room full of losses.

Somehow, in the midst of that grief, the enormity of the changes began to dawn on me. I started thinking about who I was going to be as I shifted into this state of disability needing help. I had no idea yet just how serious all this “wrongness” was or how much help I’d need. But I knew I didn’t want to dive into that tempting pool of self-pity calling to me like sirens on the rocks. I started to think about how you live with illness, and I did not want to be a whiner. I’ve seen some who chose victimhood, clutch & squeeze their needy hands around the necks of their helpers. If I was going to get support from others, especially my husband, I needed to find a more life giving way of asking for and receiving help. I wanted to come from a place of clarity and gratitude. It was a choice.

When I was young, I was horrified as I watched age and illness narrow the boundaries of people I knew. Youth and health seemed to be so much about expanding and opening and energy. That’s what I thought real life was. I couldn’t imagine that anything positive could come from narrowing. In illness and in age my boundaries have narrowed. I am smaller in the world. I walk down the hallway and there are fewer doors to choose from. But then it turned out that when I chose and stepped into a room, to my surprise, different doors opened out from it. Life does keep expanding, just not in ways I had imagined. Prior to my diagnosis I had had a long dry period artistically. I couldn’t get a focus, or a theme or a project. I now know I was very ill, but at the time I just felt stuck. I tried a bit of this and a bit of that, but nothing jelled. Then I was diagnosed with the first cancer, multiple myeloma. You might be surprised to know that this was actually a relief. I finally had some clarity and words about what was wrong. And with that I suddenly knew exactly what kind of art I needed to make. Even as I was frightened by the diagnosis, I was excited, focused, and energized with the visions of the art projects I was going to give birth to. In my case it was art about the nature of cancer. I would use this plague that had descended upon me. Nothing like a Mortality’s cold grip to get me in motion!

Carrying out the projects wasn’t so easy because my body now had limitations that the young, healthy Diana hadn’t had. Of course my younger self had met limitations – there are always limitations – but they hadn’t been limitations of energy and mobility. My impetuous, crazy 35 year old self could work all night. Acceptance of this aging, diseased body required that I address my limitations as I planned my projects. At one point I was making life-sized sculpture. I decided I wanted to be able to move each finished piece by myself, but I’m not nearly as strong as I used to be. So I made them out of light aluminum pipes, wire mesh and plaster bandages. Then I built some dollies so that I could move them. Acceptance has made me more ingenious.

I don’t hurry as much as I used to. I notice this particularly on public transit. I’m the one holding onto the hand rail as I descend down onto the subway platform. I’m the one not keeping up with the rush and the thrum of the pace. That is because I can’t move quickly or fluidly anymore. So like any person with a physical disability, I have to deal with this. There are moments of inadequacy when I almost want to tell the impatient commuters that I didn’t used to be like this. But what is the point of that? Here I am, moving slowly. Sometimes people give me their seats and I graciously accept. And you know, the world looks different when you move slowly. I watch the choreography of how people move into and out of subway trains. I think about how as a society we hurry from moment to moment and I wonder about all the rushing. I think about how older people the world over have had to learn how to dance to a different, slower rhythm. And I remember that the slow dances carry their own, more intimate pleasures.

I’m not always noble and philosophical about living with cancer. Some days I’m nauseous, tired, grumpy and short tempered. Then I don’t even care that my life is all about tired… I am one with my Exhaustion – that’s all I am. And then I am infuriated, mostly at myself, that life seems to only be about weariness. I have to work to separate some part of self from the fatigue and the fury. Hello human person. It takes effort to love and accept myself through these times, and I do it only with varying degrees of success.

One of the challenges of acceptance is to balance carefully on the line between giving up and pushing forward. Sometimes I feel I’m just not trying hard enough – to get to the gym, to write another exhibition submission, to do my share of household tasks, or to go to more cultural events. I feel that if I don’t do these things I am giving up, even though I’m tired, my bones are weary and my muscles hurts. Sometimes I think I am imagining these aches and pains to get out of going. Am I really just a lazy slug? When I was younger and healthier, I thought that ‘acceptance’ was another word for giving up on life. Now I see how our culture relentlessly pushes us forward. Progress it is called. Instead I need to cultivate compassion. It requires that I look more nakedly at what I can and can’t do. I can’t just motor over myself and not notice what is going on. Sometimes I have to accept that I can’t do, do, do. I just have to be.

I want to talk a little more about the flesh. That is, after all what this is about. My body. We live in a culture that is obsessed with the youthful body. The youthful body Photoshopped and sculpted into unrealistic, impossible shapes and surfaces. In this paradigm age is unpleasant, scars and disease are ugly. ‘Normal’ is defined as something other than me. I, like many large women, have spent much of my life hating my body. I have given energy to this self hatred, nourished it with tidbits from my daily life. A sideways glance of myself reflected in a store window would disgust me. So here is the good news. Cancer ridden, new scars from surgery, the wrinkles and flabbiness of age, lack of energy and impaired mobility – I actually have more moments of sensating and enjoying my body now than I ever have before. That’s acceptance. All those years of fantasy – wanting, wishing and hoping that my body would be different than it was; I’m done with that. Now I accept that this is the body I have. Diana is this flesh. Mortality’s glance at the watch and sighing tone told me if not now, then when?

I wouldn’t wish cancer upon anyone; however since it is here, how can I make use of it? How can any of us use the catastrophes that Life serves up? I have spent much of my life living as if tomorrow was going to bring the answers. Now I feel that Mortality, because that is really the great gift of illnesses such as these, is reminding me to throw out the illusions. There only is accepting what is here right now. Let me unwrap the treasures within that. Thank you.

Cancer Update #10

January 26, 2016

Dear Friends and Family,

This past Thursday marks one year since I was diagnosed with cancer. As you know, it has been an intense year. A stem cell transplant is a brutal treatment. I am, though, very happy to report that I am now in far better shape, both physically and emotionally than I was pre-diagnosis. In other words, the treatment has worked. After what seemed like a slow recovery, my energy is up and my back pain is down. I am able to walk once more and that is a great gift. I am back to doing dog walks. Having body energy again gives me a renewed sense of hope.

As I get better, it has begun to sink in just how sick I really was before I was diagnosed. Early on one of the doctors did some detective work and found lab results from 2008 when I had some surgery at Women’s College Hospital. These results show that my kidneys were already compromised back then, which means that the cancer was already present. That means that my exhaustion thru graduate school wasn’t just the enormous amount of work they piled on us, it was also because I was ill. How did I write a thesis and produce a body of work? It is very odd to realize I was ill for a few years without knowing it. I just thought it was reality. When did that first white blood cell go rogue and begin its exponential growth? No answer to that question.

I have become very intrigued by what the experience of cancer is, both in our bodies and in our culture. The hospital world has its own reality. I see the attraction of television shows about life inside hospitals. And then there is the pharmaceutical industry. I’m taking maintenance chemo that costs $100,000 a year. One pill (I take 3 a week) costs $270! I’m not paying for it – the Canadian taxpayers are. Who is making all that money? So my art continues to explore these questions. It is very satisfying putting my experience into finding meaning thru visual & written forms.

While it is glorious to have energy again and be able to do more, I’m not cured. The cancer goes on growing, but from an earlier starting point. I go on treating it and suffering various kinds of collateral damage. Other medical issues that were overshadowed by the cancer are making themselves known again. I am living with cancer. This is the last cancer update letter for now, but there will no doubt be new chapters opening up down the road.

Many of you helped Peter and I in the last year in umpteen different ways. Your letters, cards & emails cheered the spirit and made us feel not so alone. Some of you came and gardened for us (& some of you are way better gardeners than me, so the garden is thriving!); others of you drove me to & from that endless river of appointments and some fed and comforted Peter when I was in Princess Margaret Cancer Centre. There were dog walkers and dog sitters. Various people taught me to meditate; others cleaned my studio. Some contributed intimate talk about their own cancer or kidney experiences. Others offered retreats to their warm climate or summer properties. People brought books, flowers, food and emotional connections. The woman in the dosa hut on the corner still gives me food. I have felt very held by all of you – thank you. I did draw the cancer card, but I also drew the loving community card.

Peter, who has given me a bottomless bucket of love and support through this ordeal, is taking me to Belize at the end of February. In the worst moments of last year I thought I’d never travel again. Now we will go snorkelling and stay with an old friend who lives in the Belizean jungle!

I’ll let you all know when I’m having an exhibition of the Cancer Files, my latest body of work.

Love,

Diana

Cancer Update #9

September 4, 2015

Dear Friends and Family,

I’ve been home from the hospital for 4 days now. It is wonderful to be in my own house with Peter and RuiDog. The garden is lovely to sit it and, although I’m eating very little, it is great to eat real food rather than the sludge they serve in the hospital. I’m feeling rather surprisingly weak and mostly I just want to sleep. I did have a doctor in the hospital tell me my job when I got home was two fold: eat and sleep, so I guess I’m doing alright. Unfortunately I’m also suffering from my bad back – the herniated disk didn’t like the lack of movement.

I was in the hospital for 22 days! That’s a long time. It was a mixed experience like any canoe trip. I was given the big poison shortly after my arrival, followed immediately the next day with my own stem cells which had been carefully stored away. Then followed 5 rather surreal days when nothing much happened. The water was smooth, the sun shone and I had a variety of visitors. The autologous stem cell unit is very interesting. Because infection control is one of their chief tasks, all patients have their own rooms, the nurse to patient ratio is very high and the nursing staff are superb – very knowledgeable, caring and compassionate. All this seemed like overkill in those first few days. Then, right on the schedule, the water got rough and the weather turned bad. I won’t get too graphic here, but suffice to say that that the high dose chemo kills the lining of the GI tract as well as my bone marrow. So both ends of the GI tract were out of control for a few days. Very nasty. I didn’t get mouth sores (fortunately) and I only had a mild dose of difficulty swallowing – something other people get in extremis. I also suffered from very high fever. So those rapids lasted about 5 awful days. Then things got better and I was all set to go home, when I developed another high fever. I had to stay in hospital for another 5 days. Somehow this was the hardest part of the journey. I was dying to get of there by then. Overall, though, I was well looked after in a very well run unit. I also had a nice bonus. Outside my window was a beautiful garden made of huge glass flowers in a variety of colours. Very magical and full of whimsy. I loved watching how they changed as the light moved thru the day.

Thank you for your many many emails and cards full of poems, canoe trip stories, good wishes, encouragement, and love. They helped the journey tremendously. I’m sorry I’m not able to answer you individually. And many of you have written since I returned home asking how I am doing. Please take this letter as your response as I don’t have lots of energy.

If anyone wants off this list, let me know. Meanwhile I love your responses, but don’t expect individual replies back.

So I’m at home healing. I thought it would be hard to go slow, but so far, tiredness and weakness make that easy. I look forward to slowly building myself back up. Meanwhile, sleeping, reading, knitting and sitting in the garden with the dog seem to be the main activities on my To Do list.

Love,

Diana

 

 

Cancer Update #8

August 9, 2015

Dear Friends & Family,

I finally received The Call today from Princess Margaret Cancer hospital. They have a bed for me. Unless the last remnants of the mild cold I have sends me home, I will be checking in later this afternoon. Then I begin The Ordeal – the stem cell transplant for my myeloma cancer. I anticipate being in hospital for 2-3 weeks unless I have a bad infection, in which case it could be longer. I expect to have a slow recovery afterwards.

Please do not come and visit me in the hospital. I gather that there are 5 days or so of this process which are ghastly. I will not be a pretty sight, nor will I have energy for anything except survival. Once I’m home, I might like visitors in very small doses.

I loved getting all your letters after my last update. I fully intended to respond to them, but somehow it never happened. Don’t feel any pressure to write; on the other hand, know that I love feeling a connection with you via your letters. Again, you may or may not hear back from me.

I’ve added a few new people to this list. If you don’t want the letters, let me know & I’ll take you off the list.

How do I feel? Like I’m about to head out on an Outward Bound course minus the beautiful Northern wilderness. But that feel of a journey. I put on that hospital gown and hand my flesh over to them. New people, big rapids, canoe might flip and I hope I have enough safety gear to survive.

Wish me luck.

Love,

Diana

Cancer Update #7

May 26, 2017

Dear Friends & Family,

This is kind of creepy, so skip the first part if reading about medical procedures is too icky for you.

I’ve finished the first part of my cancer treatment – 16 weeks of Induction Chemo, aka Chemo Lite. Now begins the Stem Cell Transplant. It is divided into 3 parts – harvesting cells (called mobilization (really?!! military language?)), killing the cancerous cells (& the rest of my bone marrow, hair growing cells and the lining of my GI tract) and then replanting the harvested stem cells. Part 1 has begun. Later this week I’ll be given a drug which makes my stem cells leave their happy bone marrow home and head out onto the blood vessel highway. After a few days of this treatment, the blood vessels will be crowded with stem cells and I’ll be attached to a dialysis like machine. This will take my blood out (& put it back!) and separate out the stem cells. They will be frozen and stored until needed. Enough stem cells for 2 transplants will be harvested. Once the harvesting is done, I have a slight break. Peter, Rui & I are off to see Brenda, my 96 year old mother, as well as some old friends. On June 22 I have something called a Hickman line put in. It is a semi-permanent in-out IV port. And on June 23 I begin waiting 2-6 weeks for a hospital bed. Once I’m in hospital, I’ll be given the really high dose chemo, known affectionately in our household as Agent Orange. That’s the horrible stuff (hair falls out on Day 12, sores in mouth, GI tract unhappy, more ghastly excitement yet to be revealed). Then a few days later my stem cells will be replanted. The danger in all this is infection, as I’ll have no infection fighting white blood cells. I’ll also be very weak as the red blood cells take the longest to grow back. I’ll be released from the hospital once my blood counts are at an acceptable level. And then a long slow recovery as the system rebuilds.

There was some debate as to whether I’d be in-patient or out-patient for parts 2 & 3. Initially I had thought that out-patient sounded good – loving Peter at my side, nice garden, my own bed, real food and the bouncy Rui dog. But then someone who had been through the whole process described it to me and I realized I wanted to be in the hands of experienced nurses. When I’m vomiting, needing blood transfusions and truly miserable, I want nurses who can tell me that this is all quite normal. And much nicer for Peter not to have the burden of care. However this in-patient, out-patient decision wasn’t up to me. It was looking like out-patient as I live close to the hospital and have lots of support. Fortunately (or unfortunately) my lousy kidney situation qualified me for in-patient. So I’ll be in hospital for 2-3 weeks sometime this summer. The down side of in-patient is the twiddle-my-thumbs wait. I need to have my bag packed ready to arrive at the hospital within 3 hours. Not too many out of town adventures this summer. While hospitals aren’t the best places to get a good night’s sleep, I do find the culture endlessly curious.

So how am I doing with all this ahead of me? Well, I’m afraid. No other way to say that. I feel that there is this vast cavern of darkness and spiders in front of me. Pain, ickyiness and unknowns loom. I console myself with the thought that recently I was very afraid of going off the steroids (as per The Treatment Plan) and having all my debilitating lower body pain return. Some of it has returned, but the great work I’ve been doing learning Mitzvah techniques is paying off. I’m finding new ways to hold my spine – transforming my motion – no mean task at age 61. I’m also learning to meditate – why is this so hard to learn? And most of all the next art series has begun, working title The Cancerous Body. I’m onto some exciting new visuals and madly reading the theory and history of illness. So while I sure wish I hadn’t drawn the cancer card, it’s the one I got. I’m using it to unfold the body and spirit into their next forms – maybe that is all we ever do with the cards we are dealt.

As always, please feel no obligation to reply. If you want off this list, let me know. If you do reply, I may or may not reply to you as my energy is quite limited.

Love,

Diana

 

 

Cancer Update #6

Monday, April 20, 2015

Dear Friends and Colleagues,

The group show at Humber College was a great success with a buzzy opening and lots of people in attendance. For those of you who didn’t see it at the show, I have finally put the new work, Mortal Selfies, up online.I’d love for you to have a look at it:

http://www.dianameredith.com/gallery_mortalSelfies.php

The files are fairly large, so patience please as they load. In the analogue world, the viewer can move around the objects; here I’ve given you close-ups instead so that you can read the text.

I’ve also used this opportunity to update my website in other places. There are three more new galleries, other than Mortal Selfies. If you have time, have a look at them too:

My MFA thesis work is here:

http://www.dianameredith.com/gallery_age.php

The ink drawings which led up to Mortal Selfies are here: http://www.dianameredith.com/gallery_inkDrawings.php

And an older project about my neighbourhood which is only now getting itself online:

http://www.dianameredith.com/gallery_theNabe.php

I’m in Week 12 of my Induction Chemo. Mostly I have no side effects from it. One of the weirdest ones I do have is that my sense of taste is altered. Some days everything tastes like cardboard; other days I can only taste strong acid, sweet and salt. I find myself wanting to add salt to everything and then remembering that it is my taste buds, not the food that is the problem. I realize, sadly, how much pleasure I normally take from good tastes. In general, though, I am in much better shape than I was prior to my diagnosis. I have more energy because I’m not so anemic; my back and legs don’t hurt all the time because of the strong steroids I’m on and I’m no longer in a state of abject terror wondering what on earth is going on with my body. Cancer is scary, but the unknown was even scarier. I am worried about my back (a herniated disc) post steroids. I’m addressing this by doing Mitzvah. It is a body alignment modality akin to Feldenkrais and Alexander Technique. I’m hoping this work will alleviate my back pain.

Meanwhile I’ve joined a cancer support group and connected with a Toronto Myeloma organization. It is great to talk with other people who have gone through cancer treatments. This coming summer I will be having the next phase of my treatment – Stem Cell Transplant. I’m not looking forward to it. I’m trying to learn as much as I can about it now to lessen the mystery. This is when the high dose chemo happens. It sounds as if there is a long recovery period required afterwards. The medical team recommends not going back to work for 3-6 months with many people needing another 6 months after that. With those time lines in mind, I have decided to permanently leave teaching at Humber College. They need to find someone to take the digital courses to the next stage. And I’ve decided it is time to give myself over to my art more fully. I’m sad to leave teaching, but also ready to move on.

I’m about to start the next cancer art series. I can’t say too much about it yet except that I’m excited about getting it going. I’ll keep you posted. Of course I’d love hear what you think of the new art; however I may not give you much of a reply as I’m in Art First mode. Also, for those of you also on Face Book with me, the silence is about to end. I’m about to announce these galleries there, so FB will know about the cancer. Lastly, if you want off this list, let me know and please feel no obligation to reply.

Cheers,

Diana

 

Cancer Update #5

March 3, 2015

Dear Friends, Family & Colleagues,

My first series of cancer art works, Mortal Selfies, are almost finished. It has been a very exciting push to get them done. The side effects from the chemo – nausea and tiredness – have been present but not overwhelming. I have felt quite energized by the task of shaping visual pieces that speak to this early experience of cancer. As I move through the treatment stages, I hope to continue finding forms that speak to my journey  I’ve written an artist statement about the work which I’ve pasted into this email. I will be getting the work up online sometime soon…

Meanwhile, I’d like to invite those of you who are nearby to come and see the new work in a faculty group show, RUBRIC,  opening next week at Humber College. I’ve attached the invitation below; however there is an additional opportunity to see the work.

Reception:

Thursday March 12 – 6:30-8:30pm

Guelph Humber Art Gallery – GH 123

Exhibition Dates

Tuesday March 10 – Wednesday April 1

Monday to Friday 12-5pm

I’ll be at the reception. The gallery will also open on Saturday March 14 from 12-4pm. I will be there and would love to see some of you then.

The Guelph Humber Art Gallery is at Humber’s North campus, off Highway 27 just south of Finch. If you are driving, take Highway 27 to Humber College Blvd. It is a bit north of Rexdale Blvd. I’m attaching a map of the campus where I’ve marked the building with the gallery in red. If you are coming by public transit, go to Kipling Subway station and take the 191Highway 27 Express.

Cheers,

Diana

Diana Meredith: Artist’s Statement

We learned that, “The personal is political,” from the feminists of the 1970s and 1980sI count myself among them. My artwork is informed and shaped by using personal experiences, especially of the body, as sources for my artwork. Mortal Selfies is a first investigation of my recent experience of multiple myeloma, bone marrow cancer.

Each image begins with a photo I took of myself – the contemporary ‘selfie’, which is used, in turn, as the photo reference for an ink drawing. The image is then brought into the computer and visually fractured. The fractured image reflects the experience of cancer diagnosis, treatment and identity in a variety of ways. Myeloma is a disease of the blood cells. These are tiny pieces of self that have fractured from the integrated body and have turned on it. Contemporary cancer treatment involves a massive use of pharmaceuticals – those fractured pieces of biochemical science targeted at particular cells. Finally, identity as a cancer patient embraces a multiplicity of fractured identities. Donning the iconic hospital gown and moving through the rituals of medical testing and oncology clinics, as well as ingesting the futuristic drugs of chemotherapy, advance one through a series of constructed identities. At the same time, the high tech of cancer science is counterpoised against the personal sensations of the diseased body and the flood of community support. These different kinds of identities fractured together to construct new facets of identity.

Before I went to graduate school at age 57, I would not have included text in a work of art. My initial art training took place within the framework of Modernism which espoused form over content. The visuals needed to speak for themselves and language was a separate entity that had no place in visual art. The ideas behind Contemporary Art changed my thinking on the use of text.  I realized that text was both a visual element as well as a site of meaning.

The four pieces that make up Mortal Selfies explore different aspects of the personal and public text that surrounds us in contemporary European-American society. Loss looks at the diary – a site of personal reflection and private exploration. Numbers reflects the experience of the modern cancer patient in treatment. Frequently, at times daily, blood tests tell the cancer narrative far more sharply than that out-moded measure, “How do you feel?” Creatinine levels, kappa light chain proteins and hemoglobin are some of the numbers that define my treatment plan. At the same time the numbers of prognosis inevitably raise the spectre of mortality on a profound level. The third piece in the series, Chemo, investigates the pharmaceutical industry. While the miracle of chemotherapy cannot be denied, the high price of cancer drugs does beg the question, “Who is making all that money?” The series ends with Cherish, a homage to the outpouring of love, support and wisdom that has come my way since my diagnosis. I use hand written text to reflect the personal nature of these emails.  Finally, each piece is defaced with that most illicit of public texts – graffiti.

Through text in various forms, fractured ink paintings and the dance between the manipulations of digital processes and the materiality of analog, I have found a visual form to encompass the early stages of cancer diagnosis, treatment and identity in contemporary, urban Canadian society.

_____________________________

http://www.dianameredith.com