“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.
There is, I hope, a thesis in my work: we may encounter many defeats, but we must not be defeated. That sounds goody-two-shoes, I know, but I believe that a diamond is the result of extreme pressure and time. […] I am saying that we may encounter many defeats—maybe it’s imperative that we encounter the defeats—but we are much stronger than we appear to be and maybe much better than we allow ourselves to be. Human beings are more alike than unalike.
– Maya Angelou, from The Art of Fiction No. 119, the Paris Review
Earlier this week, the writer, teacher, composer, filmmaker and exceptional human being Maya Angelou died at the age of 86. I remember watching TV during the 1993 Presidential Inauguration, spellbound as she recited “On the Pulse of Morning.” I was only twelve years old, but I knew I was witnessing something awesome, in the sense of breathtakingly impressive. I now grieve her death, but I also recognize that she has left behind an extraordinary legacy, a legacy that lives on in her creative works and the influence she has had on multiple generations, myself included.
But it isn’t Maya Angelou’s death that makes my heart heavy. It’s the news that two women from the online arthritis community have died, one from heart failure, and the other from an untreatable infection. I want to say that I didn’t know either of them personally, so my grief isn’t one of personal loss, and I do not want to encroach on anyone else’s sorrow. Yet I can’t help but feel the rage and sadness begin to boil up inside of me: these deaths should be preventable. Autoimmune disease shouldn’t have shaved 60 or even 16 years off of these young women’s lives. Yet too many doctors fail to identify early autoimmune disease, and then after diagnosis they fail to “treat to target,” insisting that if joints aren’t visibly inflamed, then everything must be OK, dismissing patients as hypochondriacs when they report symptoms (like fatigue, weight loss/gain, and chest pain) that point to the violent damage that autoimmune disease is doing to internal organs and the vascular system.
Among competing hypotheses, the one with the fewest assumptions should be selected. (Occam’s razor) “Whenever an affirmative proposition is apt to be verified for actually existing things, if two things, howsoever they are present according to arrangement and duration, cannot suffice for the verification of the proposition while another thing is lacking, then one must posit that other thing.” (Chatton’s “anti-razor”) “Patients can have as many diseases as they damn well please.” (Harrum’s Dictum)
Medicine has its own little collection of aphorisms–pithy sayings that often get trotted out to try to explain or discount patient behavior. These aren’t limited to variations on Occam’s razor, but they often work to suggest that the simplest explanation is best. On more than one occasion, I have been subjected to a paraphrase of Dr. Theodore Woodward’s directive: “When you hear hoofbeats, think of horses not zebras.” This is generally taken to mean that the physician should consider the most common diagnosis first, rather than an exotic one. I suppose this is good advice for the medical intern, or the harried ER doctor, but what happens when it is a zebra, and not a horse? Or two zebras? Or a herd full of zebras? Or an albino zebra?
All of this is on my mind today because I saw my rheumatologist earlier this morning to discuss my unsuccessful attempts at tapering off of prednisone. I had hoped Kineret would be my magic bullet– and it has been for my inflammatory arthritis (which meets the diagnostic criteria for RA, but is likely a variation of TRAPS and/or AOSD). However, as it turns out, lupus is still lurking in the shadows, and was all too happy to make an appearance once the prednisone shield came down. So back up the prednisone dosage goes.
At this point, I wish I were better at grappling with uncertainty. If nothing else, chronic illness forces you to relinquish the illusion that having a diagnosis is an end point. It’s really just the beginning, and always subject to revision. As my doctor said today, my symptoms could be entirely different in five years. So I do my best to focus on now, and on what will allow me to have the best quality of life–to flourish–now. If it means prednisone today, it means prednisone today. Maybe later it will mean Imuran, CellCept, or Benlysta. Maybe research into autoimmune and autoinflammatory diseases will reveal new causes and new treatments and I will end up with an entirely different diagnosis altogether.
It’s so easy to be discouraged, but then I think back to how miserable I felt when I was first diagnosed, then when I was on methotrexate and Arava with the added trauma of losing half my hair (and sometimes what felt like half my mind), and it’s easier to see how far I’ve come. A few milligrams of prednisone isn’t the end of the world. Diagnoses are a means to an end. It doesn’t “please” me to have more than one rare disease, but if I’m a zebra, I’m a zebra. I didn’t choose to be the exotic one, but really, who would choose to be a horse when you could be a zebra instead?
The link above goes to a press release about a study by the Arthritis Research UK Centre for Genetics and Genomics at The University of Manchester. This kind of work is really important, and I suspect we will see major changes in the diagnosis and categorization of autoimmune and autoinflammatory diseases in the next decade. But it brings up some interesting ethical dilemmas. For example, knowing that there’s no cure, would you live your life differently if you were told your had a “RA gene” and that a viral or bacterial infection could bring on full-blown disease?
Abstract and full paper here.
Those of you who have been following this blog for a while may remember my post about not making New Years resolutions last year. While I haven’t really made any resolutions for this year, except to continue my (un-)resolution from last year of being kinder to myself, I have spent the past few months thinking a lot about food, and sugar in particular. I read Gary Taubes’ Why We Get Fat a few months ago, and it’s really changed my thinking about nutrition. I’m going on vacation next week, and plan to be as indulgent as I like because, hey, it’s vacation! But when I get back, I’m thinking about making some significant changes to my diet, though not for the reasons you might expect.