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 #12

Sept 9, 2016

Dear Friends and Family,

On Wednesday I began the Treatment Phase (it is like that – capitalized) of my breast cancer. It was surgery – a lumpectomy and removal of 4 lymph nodes. I am surprised at how well I feel now, less than 48 hours after the experience. I kept calling it, “getting chopped up” before hand. It didn’t feel like that. It was very intense as I was moved from one preparatory procedure to another until I finally reached Surgery. It is as much about negotiating all the different people who deal with you as it is the particular hole they punch into you or the wires, radioactive markers, or blood products they insert. I work very hard to learn their names and some piece of their story as well as understanding the medical proceedings. I asked the young woman handling my breast as she set me up for the first mammogram of the day if it was interesting seeing all the different breast shapes. She said that at first she was embarrassed touching people so intimately, but then she realised that every breast was different, like hands. Once she understood breasts as hands, she felt easy handling them. The hospital is an amazing system, some of which works very well and some which doesn’t. The timing of the day hit some snags early on which put pressure on other parts of the day and the people who were responsible for them. Sometimes pressure brings out the less attractive parts of humanity, myself included, but sometimes the more creative parts appear. The operating room was an A team, all dressed in blue. They were very smooth and graceful as they moved from job to job. The big guy gave a summation of the task at the beginning in just the right tone which focused the whole group. They were tuned into me, so when I cried out, “Oh, won’t someone hold my hand and tell me it’s going to be ok?”, three warm hands were extended immediately and they said just the right thing. Then there is that strange experience of anesthetic. The anesthetist says she has just given me a needle of something and I’ll feel dizzy. I say, oh this is a sweet high and then abracadabra, I wake up somewhere else. Not Oz. I was very groggy and trying to put together where I was and what happened before here. My glasses continued to be 15 vulnerable floors away with my clothes. But by squinting I could make out the giant clock which told me 2 hours had disappeared. The surgeon came to tell me all had gone well.

Then a very strange thing happened. I got talking in my groggy, rising-to-the-surface way, to a recovery room nurse. She asked what I did and I told her I was an artist who made art about bodies and cancer. She looked astonished at the idea that someone could make art about such a thing. She pulled her iPhone out and went to my website, looking at the images and reading the text out loud. The she turned to me with tears and told me how cancer was touching her own life, separate from being an oncology nurse. It was so intense, like a fire, to feel my art feeding her, taking her beyond all this medical construct of the experience, even as we were conducting ourselves through that medical theatre. Some might think that she overstepped boundaries in a professional setting. I think we stepped together through the boundaries to a place of much deeper meaning and connection. It buoyed my healing immensely.

So I feel as if I am shifting gears. August was a very tough month. When I got the diagnosis of Cancer #1, I was thrown into the experience instantly – diagnosis, hospital, induction chemo, cell harvesting, hair loss, and finally stem cell transplant, with its long, slow recovery. I’d had to absorb the whole experience just as the next wave crashed over me. For Cancer #2 I’ve had time to take in this new diagnosis and it’s ramifications more slowly, before most of it starts (though there were some brutal, even-complain-about-them, tests). We did get to Miami for Peter’s annual family reunion. I was able to snorkel and see that lovely underwater world briefly. There were real connections with people I like. But then in mid-August we were all packed up to go to a cottage in Northern Ontario, canoe on the car, dog ready to go when I received a call from my Cancer #1 oncologist at 9:30 PM. She advised that my low blood platelet counts made it dangerous to go to a cottage in the wild. I might have ignored her advice, but I woke up on leaving morning with a cold on my chest. Not an auspicious start, so sadly we cancelled the trip. Instead I spent the week crying and Peter joined me for some of it. There was the loss of the cottage, but somehow that just took the first box off the shelf and then all the other losses of illness came tumbling down on top of me. The world narrows. One faces the fact that there is less time, yes, but there is also less energy. That’s the hardest part. I’m not languishing in bed, but I have to carefully choose every day what I spend my energy on. If I walk the dog in High Park at 6:30 AM (oh frabjuious joy, I can still do this!), I can’t stand and cook later in the day. If I go to hospital appointments (there is an infinite line of them), it is hard to do other physical tasks the same day. And even quieter tasks, reading, writing, drawing, require focused energy. There are the losses of possibility and agency in the world. Losses of dreams. But we all lose them eventually, it just comes at different times for each of us. Mortality. Cancer brings Mortality tapping its clipboard and raising its eyebrows, even if the timelines aren’t clear.

As always the art and the writing give me a place to open towards. If I’m going to have a body riddled with cancer, then let me understand its meaning for me, the recovery room nurse and anyone else it speaks to. So I feel as if I am shifting gears out of August’s fear of being “chopped up” and losses, now into a new phase. Healing from incisions and preparation for the next part of treatment – radiation and maybe chemo. And Art.

The usual provisos apply for my cancer letters: I’ve added some new people. If you don’t want to get these letters, let me know and I’ll take you off the list. I love getting your wonderful, loving letters, thank you so much.  I love hearing your stories and perceptions. There are too many of you for me to answer (energy, time and all that). It’s okay if you don’t write. I want you to know what is going on. Feel free to share my name and the letters with anyone else who might find them useful. I’m still not mentioning the breast cancer on FB, so please don’t refer to it. And I still don’t want information about ways of treating cancer, though I deeply appreciate you caring about me.



Cancer Update #11

July 27, 2016

Dear Family and Friends,

It is with great sadness I break this news to you – my cancer journey has opened a new chapter. I was diagnosed with breast cancer on Monday. Somehow I have become one of the two cancer people.

The lump was found through a routine breast cancer mammogram. I’m part of the Ontario Breast Cancer screening program, so I get a mammogram every other summer. The test was clear two years ago. Once the mass was seen on the mammogram, they did a biopsy and ultrasound to confirm diagnosis. A nearby lymph node was also tested and showed cancerous cells.

Fortunately the day after the diagnosis I got in to see the first expert in what is going to be a long chain of breast treatment specialists. Peter and I met with a surgical oncologist and some of his team yesterday. In 4-5 weeks I will have day surgery to remove the lump and infected lymph nodes. When that heals I will probably have radiation. Because of my delicate kidney situation (from cancer #1), as well as the kind of breast cancer it is (determined from tests after the surgery) it is not clear yet whether or what kind of chemo I will have. That’s the short version, so far, of what lies ahead medically.

How do I feel? A hundred things at once: Like I’ve been run over by a truck. Grateful to have quick access to good medical care that is paid for. Horrified by my situation. Mortified that Peter’s life is as swamped by this as mine is. Sad that this is the life that I now have. Amazed at the resilience that rises up to face the new beast. Overwhelmed by all the new information I have to absorb. Curious about the new part of the medical system I’m entering. Intrigued about how this will deepen my cancer art. Grateful for all the love and support that is already coming my way.

I am reviving the previous Cancer Update list that I used last year for cancer #1 to keep you up to date on my situation. I’m operating on the premise that I’d want to know if it was you. I’ve added some new people to this list. If you don’t want to be on this list, for whatever reason, please let me know and I’ll take you off. There are many of you on the list. Your loving responses mean so much to Peter and I – they keep us afloat. It is an intense time as we find our way through this – I am not able to answer all your emails. For now please do not send me breast cancer information of any flavour. I know that there is a lot of it out there and I need to slowly find my way through. Feel free to share this information with anyone who knows me. At this point I’m keeping it off Face Book.

You know by now how I ‘do cancer’. My way is try and speak the truth of my experience – I hope without overwhelming my listeners. I try and tell my story through my writing and art. That is how I stay alive with what is now my life. It is also the life of many other people – you may be one of them or you may love someone in this situation. I view this as a cultural phenomena as well as a personal journey.

Fortunately the timing of my upcoming treatment means that I still get to go to Miami next week for Peter’s family reunion – lots of people I love there and I hope to snorkel off the Florida keys while we are there. Later in August Peter and I are going to a cottage in Northern Ontario, near Cobalt, a geography we love deeply. We’ll be able to canoe and swim in that spare and healing landscape.