“Going Beyond Patient”
By Matt Ellison, MFA, CSM, Patient, Novelist (Return to Independence Basin), Technologist, and Lover of Playing the Bass
“There’s no ‘I’ in ‘Team’”… The Darla Corollary: “When ‘I’ is replaced by ‘We’… even ‘Illness’ is changed to ‘Wellness’”
I’ll start this story with another, told to me by a colleague I hadn’t seen for a couple years. It began with her undergoing a difficult hip replacement that traced back to an untreated childhood abnormality. Her recovery stalled, and after months of enduring pain, she learned the reason: a diagnosis of Rheumatoid Arthritis. More suffering ensued, compounded by a fruitless search for treatment and relief. This story had a happy ending, complete recovery and return to health and wellness, physically, psychologically, spiritually. I won’t spoil it for you, you’ll have to read Abigail’s Year of Return to New Self for yourself… it’s lucid and inspiring and helpful.
What I want to pick up on is a conclusion my friend made about her ‘story’: that a disease can be a life-changing opportunity. In so many words, she allowed that it was the best thing that ever happened to her. In actual words, she writes “… the sudden onset of RA… rearranged my priorities… when something powerful brings confusion and devastation [and] reminds you that you’re going to die… [it] changes everything… I’m grateful for this… disease… it forced me to start supporting myself.”
I could only agree. I understand how making use of your illness can transform your life in conjunction with recovering from it.
I admit to being fertile ground for this perspective. When I was diagnosed with chronic lymphocytic leukemia in 1999, it was not my first acquaintance with powerful reminders that life is, ultimately, terminal. My younger brother was 8 when the pain in his knee—first believed to be Schlatter’s Disease (which my pre-adolescent mind formulated as ‘Slaughter’s’ Disease)—was determined instead to be acute childhood leukemia. In 1964 that was a “death warrant”, as I wrote in an ‘extra credit’ paper my 7th grade biology teacher assigned me. And in fact, Tommy lived only 2 more years.
I was 47 when I got my own “notification”. Of course I was freaked—scared, angry, sad, depressed, despairing about my imagined departure and even more so about my son’s (age 2) and daughter’s (age 6 months) future without me, crying quietly at movies with absent fathers like The Lion King that at best all I would be for them was a star in the sky.
Nearly 18 years later and counting, it hasn’t entirely escaped my attention that I’m still around. That I have been privileged to experience all those very moments I feared (more than once) I would never see: birthdays and booboos, report cards and graduations, vacations and college and, hopefully, a wedding or two, a grandchild or three, and maybe more.
Remarkably, I’m not special, one of many in this same rickety canoe paddling our way forward into the unknown. So many more of us now are kept afloat by hardworking support communities and health workers and fundraisers and donors and researchers and practitioners. What they have wrought since the dark ages of my brother’s illness has yielded possibilities unthinkable 50 years ago. As a beneficiary, I have to think, I want to help too. From there, it’s a short oar-stroke to realizing with illness comes opportunity. And a reason to Go Beyond Patient.
Not that I am thankful for my leukemia. I’m not. Not that I’m thinking I can save myself by saving others. Not that I believe I can cure myself by changing my outlook. By being ‘pathologically optimistic.” Recovery for me may not be complete. For some of us, recovery means not succumbing, keeping going, making the best. If you’re reading this, you know. It’s our full time job—one of them—every morning, you (or someone you care for) gets up and goes to work recovering, knowing that will be our life here on out. It’s out of this ‘patient experience’ comes the D’uh moment: the urge to turn illness to advantage. When you open your eyes and see so many others who have encountered this urge and stopped ignoring it. It’s not just being oh so self-sacrificing, it’s just admitting the obvious: you help yourselves on the path to wellness by using your adversity to help everyone else on the same path. And even for the healthy, wellness is not an absolute. Life itself means we’re all of on always doing ‘maintenance’.
If you haven’t started, here’s how I did.
A friend and supporter, who undertook to start a team in the Leukemia Lymphoma Society “Team in Training®” marathon program badgered me into sharing ‘my story’ at support rallies held to build up enthusiasm and more support. I was one of a few, and even after my first time, it was clear how I could be useful. Just standing up shows everyone what success actually looks like.
It’s an easy and rewarding and health-stimulating way to begin. Stand up and tell your story. Downs as well as ups. Whatever it is. However it changes. It’s not about just you. It’s about us. At one event, the organizers presented us with comfy work-from-home sweatshirts that I just realized I am wearing as I write this. On the front is written “Hero”, on the back is written: “A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.”
“Hero”? No. Not me. I know what heroes really are: People who put others ahead of themselves… then annoyingly thank everyone but themselves for their sacrifice.
Shortly before he died, my friend Pete, an 88 year old WWII bomber pilot and reformed alcoholic shared with me a little precept he learned in AA: Take any group of people in a room, have each make a list of their life issues and toss their list into a hat, then have each draw back a list from the hat. You will find that most everyone would very happy, once they see them all, to get back their own. A useful reminder that none of us, least of all me, have cornered any of the many markets in suffering.
I’m not a hero nor am I looking to be. I am lucky where many are not. Not everyone diagnosed in 1999 is still with us. Many more are far from cured. Some never will be. No one, most of all me, should take this lightly. Minimize the brutality of illness and disease. Each day the unwell are shadowed with reminders of a mortality more imminent, more in your face, than is the norm, whatever our ages. In between the uncertain periods of quiescence, we succumb to myriad agents of infection, ubiquitous in our everyday increasingly poisoned environment, viruses and bacteria that an uncompromised immune system would swat off like gnats. Our second home is in line at the pharmacy. We are in and out of hospitals, our veins are IV exhausted, we begin yet another treatment before the previous is completed. We hold out for miracle cures that are always just around the corner, endure setbacks when they don’t go well, suffer significant and permanently damaging side-effects, to our vision, hearing, heart, lungs, our entire psychic stamina. We are vulnerable to the early onset of other opportunistic diseases, the pneumonias and the anemias and the weight loss and muscle deterioration and heart conditions, all given wide opening by our weakened resistance. Not to mention the non-medical misfortunes, financial ruin and job loss and expensive mold remediation and cognitive diminishment and… and while none of us mind a certain level of skinniness, cancer treatment is not a diet plan I can recommend.
Yet here we are.
So let’s share our story. Everyone. Why? Because we’re all in this together. In the grand scheme, no one person’s story is less important than another’s. No one of us will live forever; all of us will eventually depart from this mortal coil. Our story(s) are small steps for us, building the superhighway of the larger story, of progress and success, inch by inch, mile by mile. Provider, nurturer, sufferer, friend, family, fellow traveler—we have this in common: ‘We’ are how diseases become curable, and where not curable then reduced to manageable conditions that are no longer death sentences. More like inconveniences. And inconveniences? I can live with those. After all, don’t we all?