We had been brought up to notice, to take “life as it is” and turn it on the spindle of compassionate action to make it more like “life as it should be.” This is resistance (Shem, 2002, p. 934).
When short term goals of care were achieved, I was discharged by my inpatient physical therapist, with a referral to continue therapy in an outpatient setting. During a month-long hospital stay, I graduated from a wheelchair to a walker; in fact, my first mode of transportation following brain surgery was a wheelchair equipped with a plastic tray to hold my weak left arm to prevent my hand from falling limp onto the spinning spokes of the wheels while clinicians transported me from my room to the cafeteria or the therapy gym.
Slowly but steadily I practiced shuffle steps between the parallel bars in the gym, using my hands for balance and added support. Then with a bulky knee brace to prevent my leg from hyperextending, risking damage to my knee, I scooted along with a walker. Finally, I was discharged with a cane to build up my mobility over time but instructed to use a walker around the house and use my wheelchair outside of the home.
Assistive devices are often associated with a decline in function and independence, but for me, walking only with the use of a cane was an achievement. Now, I cast my cane aside when playing outdoors with our boys, but summed up recently by Whitney when I jogged several paces, “well that was awkward.” Not to mention the last time I attempted to walk our energetic two year old, 55lb dog, he brought me to the ground. “Are you OK?!” A nearby neighbor shouted. “Yes, I usually have a cane…” I began, but I let the words fizzle out after realizing the explanation for a fit-looking mid-30s year old taken down by a happy dog required more than just “I usually have a cane.” I waved off the concerned neighbor and struggled to my feet.
See, there is life “as it is” and life “as it should be,” observes Samuel Shem, the pseudonym for doctor and author Stephen Bergman, whose 1978 cult classic House of God, describing the brutality of medical residency, continues to be a must-read for medical students. The book, following a class of young doctors beginning their art and practice of medicine, exposes the reader to the horrors of the healthcare system, but Bergman does so with dark humor. In a 2002 article, “Fiction as Resistance,” from which the epigraph for this post is taken, Bergman shares more about his commitment to fiction as a guide to understanding.
As it is, or as it was in the summer of 2016, I celebrated when I was able to transfer to the toilet without assistance, and how it should be, the recovery of my agency and independence to use the toilet on my own, and also, bathe, dress, and tie my shoes became my act of resistance to the locked brain trauma unit that was my home during this time of partial recovery. The content of my journals during this time serves as the foundation of this blog, but more than share my stories with others, my writing is (was) also my guide to understanding. Fact can be stranger than fiction, and Shem (Bergman) and I have at least one thing in common: our tools for examining the world are pen and paper.
“Other than my brain cancer,” I joke, “I’m in pretty good shape.”
As it is, I confront my health every day. Will I have a terrible headache? Do I have the familiar seizure onset symptoms, or “aura”? Does my left foot tremor when I set it down to take a step, signaling that fatigue will be problem? Does my head float, seemingly detached from my body?
I wrote a blog post recently addressing the “you might as well” sentiment: you have brain cancer, have some ice cream, you might as well. In that post I resisted the idea that serious illness affords an anything goes attitude. Paradoxically, perhaps, I suggest that the opposite is true: serious illness demands more rigor and discipline.
I rewrite my to-do list weekly, and I am happy to report, that list continues to fill with conferences, speaking, invited guest blog posts, and advocacy events. There is so much I have yet to accomplish: the book that is sitting incomplete on my laptop’s desktop, the three draft academic philosophy papers that need a little more attention before they are ready for submission, and the reformatting of my CV to seek more opportunities to tell my story.
My boys deserve the most able bodied dad they can get before his body falters and fails. Whitney deserves the maintenance of my health for as long as I can sustain before her spouse and care partner roles continue to bleed together.
What if the most punk rock thing I can do is get a good night’s sleep? What if rebellion in the face of illness is to decrease or eliminate those extra glasses of wine? What if my greatest act of resistance to terrible disease is prioritizing health?
Health, as resistance.
What if that’s how I take life as it is and make it more life as it should be? What compassionate actions might you take? What gap between “is” and “should be” will you close? What is your greatest act of resistance?
Shem, S. (2002). Fiction as resistance. Annals of Internal Medicine, 137(11), 934-937.
5 responses to “Health as Resistance”
I am struggling with this as doctors’ decide if the spot on my MRI is a recurrence or not.
My resistance to life’s challenges were to lean in and work harder. But that is not currently working for me and GBM. I am back at work, full time, doing the SOC religiously, to the minute, on Optune for 94% of the time, until I couldn’t anymore because of skin irritation, had a 100% resection to begin with, and have been taking some supplements. “Such a good patient!” The radiation techs complemented me for never moving.
But now, nine months out, looking at the terrible outcome of recurrence or “treatment effect”. So I’m completely average. And exhausted. And I cannot work any harder at this.
And I’ll keep going, and will most likely react by becoming more disciplined – less sugar, no alcohol instead of the one beer that I have been having. But it makes me wonder if I will feel like I missed out. Controlling my life does not control my tumor. Yet it keeps me getting out of bed every morning.
Emily, you raise a crucial point that I was too careless to address in my post: our self-accountability to health and self-care should not be conflated with patient non-compliance/non-adherence that is all too common in our healthcare system. It is not your responsibility to plan your care, that is the partnership between you and your care team, and you should never feel “guilty” or average for acknowledging that patient burnout, distress, and fatigue are near universal symptoms of serious illness. I am happy to hear you affirm that getting out of bed every day is a good thing to prioritize, for as long as you can, but when you can no longer–when both of us–can no longer, that is not guilt or failure, that is only a difficult fact of brain tumors and many other serious illnesses. Thank you for helping me clarify my sloppy thinking on this, and let’s both of us move forward in solidarity doing the best that we can, that is right for us.
I just found your blog. We are 3 days into this. He had seizures on Tuesday, diagnosis on Wednesday and it’s Friday morning, and I’m his mother. No surgery yet, but it’s scheduled for Tuesday. He doesn’t really understand at all what is wrong with him, and believes he’ll be back at work within a week of surgery. He does not have your life–no wife, no children, a blue collar job, and a good day is 12 beers and watching a football game at a local bar where he knows everyone while smoking a pack of cigarettes. I want him to know the truth, except he’s a touchy-feely guy, and one who is not an intellectual like you or me. There is no “care team” just a collection of people some with more information than others, in hospitals and medical offices, in his work place and church and in our family. And so far, no one has considered the “talk,” the “truth.” His personality, always fun loving and volatile, has been impaired by the seizures. We are 80, we have no say and no rights; we can only cry and at least try to get him to our lawyer to sign for power of attorney. That’s our big goal for today.
I got my first brain cancer diagnosis in ’01 at 22 years old. It was a low grade tumor that wouldn’t respond to radiation, so they did a resection as best they could and promised me it’d be back. They stamped my life, like milk at the grocery store, with an expiration date of 2006 at the latest and sent me home to my dismay. I joined a brain tumor support group with between twenty and thirty membersand as the other patients’ families invited me to one celebration of life after another it stopped being of any support at all. I’m the lone survivor from that group of patients.
When I started having seizures again it was ’07, and I was a single mom of a beautiful four year old boy. Life has a funny way of packing in the beauty when it could be shorter than hope reaches. I was diagnosed at that point with GBM.
I hadn’t meant to maybe die on my sweet boy, but I couldn’t just give up on all of my dreams. I had to give up so much already. I gave up sugar and alcohol and caffeine and eating meat and my job and the people who stressed me out and totally renovated my life when I got sick that first time. As you may notice, it’s been longer than the standard five year “survival” expectancy. My oncologist keeps telling me that whatever I’m doing to keep doing it. He reminds me of “how lucky I am” and I suppose that is my quiet resistance. I would like to use my survival in a more visible way to give encouragement to others, but I flatly don’t have the know how. I am interested in ideas.
Phoebe, that is great that you are looking for ways to use your survival to help others! I do most of my volunteer work with National Brain Tumor Society. Through NBTS you can volunteer in ways big and small: signing letters and calling congress, organizing local events, or even traveling to Washington D.C. for the annual advocacy day, Head to the Hill, each year in May. You can learn about these opportunities here: https://braintumor.org/take-action/volunteer/. Let me know if you have any questions! Thx, a.