on NOT dancing

Many of you, and I myself, have been amazed at how well I’ve been doing through the chemo treatments so far. I’ve even gotten concerned communications from a few of you, reminding me that it’s important to give space and attention to sad & angry feelings. (I appreciate the concern, and want to reassure you that I do have practices, based in Re-Evaluation Counseling and a variety of coaching and meditation techniques, to help me do so). You & I have also been amazed at how much I’ve been committed to and able to keep exercising, and at how much Don & I have been able to ask for and be open to receiving help.

Well, I’ve hit a rougher patch, where, for one thing, vigorous exercise is clearly not an option. My hemoglobin count had been gradually declining during the treatment, and I’d been feeling the effects; now I’ve reached the point where one flight of stairs or walking around the block makes my heart pound and makes me light-headed enough to be concerned about fainting. I’m expecting to be given a blood transfusion after chemo on Tuesday, unless we decide I really need one before then, and I hear this will make me feel much better. For now, though, I am getting the opportunity to experience feeling quite sick and incapacitated.

It’s a little depressing to not have energy to even do some of the small things that bring me pleasure – e.g. there is a brand new farmers’ market that’s at Edgewood High School on Sunday mornings that’s a mere 3 minute walk from our front door, but I’m sending Don to it without me this morning. While I probably could make it there & back without passing out, the stress and worry and risk that I might not are probably not worth it and would certainly diminish the pleasure.

Of course, if this were another “new normal,” without relief on the horizon in a few days, it might be different. I’d gradually learn, perhaps by pushing my limits, what my new limits were. And I’d perhaps learn another level of slowing down even further, and taking pleasure in even smaller moments. Right now, it feels like the main lesson is unpredictability. I have 3 or 4 things on my calendar tomorrow, and I’m not sure whether I’ll be able to do any of them.

Speaking of “new normal,” I’ve been thinking a lot lately about the differences between my “journey” with cancer, and the experiences of people I’m close to who have chronic physical and mental illnesses and disabilities. And, by extension, the differences between acute and chronic illness more generally, between crisis situations versus ongoing / slowly unfolding tragedies, and between scary but non-stigmatizing illnesses versus ones with more stigma.

I’ve been aware that, because Don and I expect my breast cancer to be a curable case that plays out over an intense but relatively short time period, it feels easier to ask for help than it would if we expected this to be a chronic condition. My loved ones with chronic pain and fatigue, where the causes and prognosis are unclear, are not asking for or receiving the level of help I am. It reminds me of the difference in our collective societal response to a hurricane or tsunami, compared to chronic, long-standing issue like poverty in a country. The tremendous outpouring of support after a disaster, generous and well-meaning and often community-building and sometimes effective, tapers off and trickles to nothing as our attention moves on to other things. Hopefully, it is enough to help those affected recover.

When the problem is not acute, however, but something like long-standing poverty and all of its attendant impacts on health and well-being, there is no such outpouring of help. Perhaps it’s because we don’t know how to help. As with a disease like chronic fatigue syndrome, the causes and the solutions are complex and unclear. Perhaps we are also afraid of getting dragged down and burnt out by too much need. It’s one thing to make a single meal for a friend, or even do so several times over the course of several months (a deep bow of gratitude for the meals we are receiving!!); it’s quite another to feel like a friend (or a whole country?!) depends on you for their meals on a regular basis. As a very wise advisor of mine Judith H. said recently, giving can be a deeply satisfying gift to the giver; the exception is when there is so much “taking” going on that there is no room to be “giving,” to feel and act on one’s own generous impulses. And perhaps it is simply harder to ask for help when there is no end in sight to the need, because we don’t like to feel dependent, especially if we feel we may be unable to return the favor. Our default mode with chronic disability is to handle the needs with paid staff support – perhaps a good solution in some ways, but also problematic, especially when drastically underfunded as it is for most of our society.

I think it is also a ton easier to ask for help when there isn’t a stigma attached to the illness. Cancer used to be a stigmatized disease. The work of Susan Sontag, who wrote the extremely influential book Illness as Metaphor in 1978, helped to change that. As one reviewer says, “Sontag shows how the metaphors and myths surrounding certain illnesses, especially cancer, add greatly to the suffering of patients and often inhibit them from seeking proper treatment.”  While there is still some thinking and language that implies that it could somehow be my fault I have cancer, (e.g. the naturopath who offered to work with me on exploring what conditions could have led to my cancer and how to change those conditions), for the most part I don’t feel people are in any way blaming me or shunning me or scared of me. There is nothing socially unacceptable about getting cancer; it is a “legitimate” form of suffering for which I “deserve” support. Sontag later wrote about AIDS, and my impression is that the stigma of that disease has eased significantly as well.

I don’t think Sontag tackled the stigma of mental illness, and it is unfortunately still very much with us. Perhaps this is because it is still relatively poorly understood; the problem of not understanding causes and solutions makes it hard to know what to do about it, and in the face of that helplessness (and fear of contagion) some of us avoid dealing with it as much as we can. Also, with the widespread Cartesian mind/body duality in our culture, we seem to feel we should be able to “change our minds” easily, whereas the body and its difficulties seem more legitimately obdurate; as a result I think we feel people are more to blame when things go wrong with the mind and emotions than with the body. I am aware that these kinds of beliefs and assumptions operate within my own thinking and behavior a lot of the time, despite my critique of them.

Well, at least slowing down even more physically gives me the time to write about all of this stuff which I’ve been thinking about for a while. And, writing does bring me pleasure. I’m not sure what the implications are of all these musings, though. I know they fall in the category of feeling privilege and gratitude that the illness I’ve come down with is one where it feels relatively easy to ask for and receive help. And as a result of this experience I definitely can empathize more with friends and family who have other kinds of illnesses and disabilities, while recognizing the differences. I wish I could say to them, just follow my lead and ask for more help, but I know it’s not that simple. Maybe the main thing I want to say is, it’s okay not to be dancing.