“When you are ill or disabled, do not feel that you have failed in some way, do not feel guilty. Do not blame life for treating you unfairly, but do not blame yourself either.” –Eckhart Tolle, The Power of Now (218)
For the past few weeks I’ve been reading bits and pieces of Eckhart Tolle’s The Power of Now. I appreciate the ways in which he brings together anecdotes and parables from various religious and philosophical traditions in order to illustrate his arguments about surrender and presence. I suspect this is why his books have been so popular, and why he received the ringing endorsement of someone like Oprah. For the most part, he also manages to stay away from the sort of woo-woo, new age-y stuff that reaks of pseudoscience.
I will be the first person to agree that pain and suffering are separate but related phenomena, and that the stories we tell ourselves about pain (physical, mental, or emotional) amplify our pain and lead to suffering. I also recognize that one of the only ways to short circuit this process of amplification is to try to be mindfully present at all times. For me, the best way to manage the physical pain of autoimmune disease is by staying fully present with that pain as it is– not the story of how the pain is like or unlike other pain, not the story of how the pain is never going to stop, or is only going to get worse, or how my life would be so much better without it, and definitely not the story of how the pain is the single most defining characteristic of my life. It’s taken me a long time to get to that point, to accept that the things my ego wants (“identify with the pain!” “be a victim!”) work against my chances for finding a lasting sense of peace and contentment.
So why am I left with a bad taste lingering in my mouth?
First, it’s all well and good to stop identifying with pain, but what happens when that pain is caused by circumstances that could be changed, either right now or in order to benefit someone else in the future? I think about the battles those of us involved in patient advocacy fight every day: better access to healthcare and prescription drugs, more research on rare and chronic diseases, appropriate compensation and benefits for doctors who go into unpopular specialties like rheumatology. Individually, we do not have the power to make the systemic changes that would improve the lives of patients. But collectively, we can fight those battles by telling our stories to people who do have the power to make changes: elected officials, scientists, researchers, insurance companies, and clinicians. How do we tell the story of our pain–and yes, suffering–without identifying with it? How do we use the power of our individual and collective narratives without become overwhelmed by them? Where is the self-help book to teach me about that?
More importantly, whether it’s Tolle, or someone like Lynn Grabhorn, many of the teachings that seek to lead people away from suffering fail to take into account the very real physical pain of chronic illness. Despite statements like the quote from Tolle that I open with above, many authors who write about mindfulness and the alleviation of suffering have accepted and re-purposed subtle and not-so-subtle cultural and religious messages about chronic illness in their work. They say that people “attract” illness to themselves; that illness is the natural outcome of negative feelings; that we need to try harder at being more present, more aware, more at peace, and then our illnesses will go away because they’ve taught us the “lesson” they were there to teach us. I am always shocked when I see these messages, sometimes subtle or implicit, sometime overt, mixed in with what is otherwise very helpful advice. Certainly, it’s more likely that someone will get sick with a cold or minor infection when they scrimp on sleep and eat a diet lacking in necessary nutrients (often as a result of “stress”). But that kind of “sick” is very different from cancer or autoimmune or genetic disease. And it tells me that these authors–like many physicians– have never had to deal with a persistent chronic condition, and find it difficult or even frightening to empathize with someone who has. Are we really still retracing the steps of the disproved “Cancer Personality” hypothesis or the “repressed anger” stereotype of the “Rheumatoid Arthritis Personality”?
I guess it just comes down to “take what you need and leave the rest.” I shouldn’t expect people to “get it,” even if they seem otherwise enlightened. In the meantime, if anyone is interested in an excellent book about mindfulness and chronic illness, I highly recommend How to Be Sick by Toni Bernhard.
Sometimes people are offended that I didn’t tell them when I was sickest, that I kept the fatigue and the pain to myself for months and months. I say, “it was a dark time, I didn’t really tell anyone.” This is not exactly true. But it comes close enough, and I still find it hard to explain what it feels like to be inside a body that is closed in by great pain on all sides. Then, as now, the narrative collapses—there is no form, no genre, no model to give hints about what might happen next, and the energy of accepting the pain, trying to soothe it, or worse, resist it, takes all that is left of the self. The disease attacks the cricoarytenoid joint of the larynx and my voice cracks. I am rendered mute from pain. There is no energy, no voice left for storytelling.
In retrospect, whatever kernel of “truth” emerged from the experience sounds hyperbolic: the stuff of melodrama. Freckles upstaged by a whole galaxy of palpable purpura that climbed like angry spiders up my feet and legs. Fingers, toes, wrists, knees—all swollen into unrecognizability. Vials of bright yellow liquid and boxes of syringes. The bargaining and shaky hands of the first few self-injections. Fatigue that hit me like a linebacker and pinned me to the ground. Waking in the middle of the night to the sensation of a knife slicing through my lower abdomen. The daily lattice of hair in the shower drain and the shock of white where my scalp was exposed.
We have stories about cancer, heroic stories of resistance and remission, and sad, or sometimes uplifting, stories about those who do not make it. We do not have stories about those who face great pain with no identifiable foe, pain that will dog them for the rest of their lives, pain that is the result of the body turning against itself, permanently. I will spend whatever years I have left trying to both accept and outrun this pain, with an arsenal of needles and pills as my only weapons. There is no “lesson” here except that life is random and parts of it are miserable. Some people face the misery earlier, and some later. Sometimes the pain comes from within, and sometimes from without. Whatever mindfulness and compassion I have gained are not a result of the pain—they are my last defense against it. Pain is not a teacher, it is a torturer.
When you spend a lot of time trying to talk your body out of being in pain—or ignoring the pain as best as you can—eventually you reach a point where you stop being able to distinguish your body’s basic pleas for attention. You start to get angry or frustrated or tearful and you can’t tell why. Some minor task goes awry and you become infuriated. You ask yourself, “Am I hungry?—because I don’t feel particularly hungry…” but you eat something anyway. Or “Am I thirsty? I don’t think I’m thirsty, but I guess I’ll drink some water.” And then “Am I tired? Because I don’t feel any more tired than usual. Do I need a nap?” And then you notice the throbbing in your hands—or your feet, or your knees, or your head—and realize, “Oh, right, I’m in pain. Still. Again.”
This morning, Gretchen Rubin, author of The Happiness Project, posted the following question on her Facebook feed:
Happiness Question: Do you consider exercise to be a treat or a chore?
While I might have considered exercise a chore in my life before my Lupus/RA diagnosis, it is now definitely a treat. While once-upon-a-time my aspirational images came from glossy fashion magazines, I now gaze longingly at the running, stretching, dancing, and climbing women in magazines like Self and Women’s Fitness (the same smiling women who can be out in the sun without a hat, long pants, and long sleeves). I flip through the Athleta catalogue, mourning the days when I had enough energy to run 12 miles and go to three yoga or dance classes in a week– which is to say, meet the guidelines for 30-60 minutes of exercise per day. I have the schedule for my local dance studio open in my browser, just on the off chance I feel up to a yoga or ballet class (this actually happens about once every six months.). I’m lucky that I haven’t gained more than a couple of pounds on prednisone, but that doesn’t stop me from grieving from the active, capable body I used to have.
Those of you who have been following this blog for a while may remember my cranky response to a small study on exercise and RA patients that received a lot of media attention last winter. The conclusions of the study authors seemed to suggest that RA patients as a whole were less active than the general population, and that this was the result of their attitudes and beliefs about the benefits of exercise, not their pain level or ability to exercise. The mainstream media took these conclusions and ran with them, trumpeting headlines like “2 in 5 RA Patients Sedentary.” This is, in my opinion, a gross oversimplification of some complex findings. One, RA patients, when grouped by age, are only slightly less active than the general population. Two, the findings in the study are skewed by a large number of older patients, a population that a) tends to be less active in general; and b) includes many individuals who received an RA diagnosis during the 1980s (or earlier), when the general consensus in the medical community was that exercise was more harmful than beneficial to joints affected by RA. So rather than trying to shame all RA patients into more exercise, which downplays the fact the many RA patients continue to deal with pain and fatigue, even once they reach so-called “clinical remission,” I think the study suggests that older RA patients need outreach to encourage them to be more active. The rest of us who want to exercise and can’t? I don’t know what the solution is, except better treatment options and access to those treatments, less reliance on broad-spectrum immunosupressive drugs like methotrexate that sap energy, and more access to gentle exercise modalities like swimming and tai chi.
I’ve always been an active person, if not an intensely athletic one. I played soccer as a child until I was sidelined by arthritis in my ankles and knees in my teens. I continued to dance, on and off, into my late 20s, and I took up running and hot yoga during a particularly energetic period in my mid-20s. But now fitting in exercise requires a complex balancing of my time and energy. In order to find the energy to spend 30 minutes on the elliptical machine or in the pool at the gym, or attend a gentle yoga class, I have to take into consideration that it will probably sap the rest of my physical energy for the day. I weigh questions like “If I go to the gym, will I have the energy to prepare myself food, or catch up on housework when I get home?” “Will the benefits outweigh the inevitable pain?” Most days the answer is no, and I must prioritize my basic needs above exercise, which has become a luxury. (I have begun to count “doing laundry” as a form of exercise—there are two flights of stairs involved). While I have had peaks and valleys of energy during the past two years, my average leans more toward “fatigue”. I hope some day I will find a treatment that allows me to return to the realm of the athletic. In the meantime I eat well, but I wear my yoga pants at home and gaze longingly at the Athleta catalogue from the couch.
How do you stay fit with chronic illness?
“The wolf, I’m afraid, is inside tearing up the place.” —Flannery O’Connor (from a 1964 letter)
So after about five magical weeks of feeling like my functional pre-MTX (but not necessarily pre-lupus) self, the fatigue has descended again. I’m sure the time change is part of it, but I could feel the creep of the fatigue all last week. I wrote it off as lack of sleep and excitement/stress from starting my new job, but now the gnawing has started up in my wrists, and I know it’s the inflammation stirring again. (Wren calls the pain of RA her “rheuma-dragon,” but I think of my joint pain as the arthritis wolf. I’m sure that’s partly the power of suggestion—”lupus” = “wolf”— but it’s just such a gnawing pain that I can’t imagine it being anything else. And we still don’t know for sure whether it’s lupus, RA, or both.)It’s hard to give myself permission to be tired, to say to myself: “Rest! Your body is telling you that you need to take care of yourself!” rather than to chide myself for being lazy. Because it’s always possible to push a little further, force myself to go a little bit longer, forego more sleep than is comfortable (carry one more load of laundry or recycling up and down the stairs…). But eventually I crash, and then what do I have? Well, I morph from chronically ill to acutely and chronically ill. And that helps no one.At my last appointment with my rheumy she asked me to try to wean myself off my ibuprofen habit, and we also increased my Plaquenil dose to 600mg (visual field test here I come). I tried—and succeeded!—to reduce the ibuprofen, but in the past couple of days I’ve been in the kind of pain that just laughs in the face of Tylenol and Tramadol, so I’ve had to undo all the careful calibrations I made last week. Back on the NSAID train. One step forward, two steps back.Now where have I put all my spoons? I need one for my writing, one for my Wednesday swim, one for each day in the office, and about fifteen for the friends who are coming to stay with me this weekend…
I’m not lazy, I’m sick. And I’m doing the very best that I can. It feels pretty heroic from my vantage point.