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.