Questing and Questioning
Albert King -- Everybody Wants to go to Heaven, But Nobody Wants to Die
I’m kinda missing the bad old days in Cancerland when medical advice was, “nothing you did led to this and nothing you can do will make a difference.” The bad old days when the American Cancer Society called diet, exercise, yoga and visualization “unproven methods”. And when Bernie Siegel’s best selling Love, Medicine and Miracles was treated as scandalous by the medical establishment…because if there’s nothing you can do beyond the prescribed treatments, then it’s patient-blaming to suggest there’s something you can do to become an Exceptional Cancer Patient.
Ah, those bad old days when success and failure were measured by tumor size, spread, aggressiveness, not by checklists of things that patients needed to do or not do to conquer cancer.
Bernie was so East Coast, so 1980s. Cancer and the medical treatments were shameful, deadly, fearsome and hidden.
In 1991, when I was diagnosed with cancer in both breasts, I was working in a Northern California natural foods market and firmly ensconced in natural healing. There was no integrative or complementary medicine, only alternative medicine – a big bin of “unproven methods” that I rummaged through looking for cures. There were the healers who assured me of cure through their psychic, spiritual, psychological, hands-on, expressive, dietary, herbal, movement, mind-body or other methods. There were elaborate rituals and pilgrimages to healers and healing places.
There was exploring, seeking, finding, losing and resuming the search.
It was my quest.
Now there is no end of advice, advisors, checklists and cancer coaches. There are maps and navigators, GPS and cheerleaders at every online corner. There’s a route to take and when you pop out at the other end, you get to walk, run, bike and celebrate survival. Your adventure is even color-coded by disease type. (1, 2)
You can shop till you drop, unless your religion is decluttering, then you gotta confront all those unread books, unused supplements and unworn ribbons. And those yellow wristbands everyone wore until Lance Armstrong fell off his pedestal.
It’s become an industry and I’m not so sure I want to buy the products being pushed. Nor do I want to buy the modern mindset.
The new story goes something like this, “In addition to medical treatments, follow these guidelines and you’ll soon be back to normal. Insert story of inspirational survivor. Of course, you can’t go it alone, so get a cancer coach and round up your social support for this brief intermission in your life.”
A branching story goes, “A fine mess you’ve gotten yourself into with that bad diet, lack of exercise, use of hormones, exposure to toxins and STRESS-STRESS-STRESS. Now it’s up to you to unmake that mess and make a new life that has no room for cancer. If you’re lucky, you’ve got the resources and it’s the life you’ve always wanted. Never mind your career, mortgage, kids, relationships, resources – they must have led to this, so renounce STRESS and get out now.”
Then there are the stories I read at cancer blogs, where writer-patients have sworn to tell the truth. And the whole truth, nothing but the truth, is often chaos – in the beginning, the middle and the end. Well, in the end, the writing usually falls off and when no posts have come for 6, 12, 18 months, I sorta figured the writer-patient died, but it’s hard to tell. Maybe there was a miracle and she has a new life in the tropics and is just too busy releasing stress to write home.
I doubt it.
No, death is still shameful, deadly, fearsome and dangerous.
Cancer? Well, it’s been polished up quite a bit. It’s a war effort and we’re winning. We’ve got the marches, military might, research dollars and dedication to beat this disease.
Do we? Have we?
Then why are my friends still dying? Declining? Becoming disabled?
Why are we still suffering, if everyone knows a way out of this mess we’re in?
Has the way out been charted? Can everyone follow it?
What I miss most is the Quest. And, I think/feel/believe that the more newly diagnosed are missing it too. Only they don’t know it, because they’re being told that the way out of cancer has been found. That the medical steps weren’t enough, so they need to do more, so much more.
What if cancer were an initiation, a call into a new and different way of seeing/being in the life you already have?
What if you need to pull out something old, something new, something borrowed, something blue, because you are in effect marrying this next stage of your life for however long it lasts?
What if it’s a life-death encounter, not an interruption in the life you had planned?
What if it’s complete metamorphosis? If death isn’t failure?
The 'Ring Theory' of kvetching is “comfort in, dump out.” (3)
Dear friends, I’m kvetching out to you today, because you might find comfort in my words. So many of you are dealing with cancer yourselves – directly or through/with loved ones.
I can’t be an inspiration or authentic, if I have to amputate the uncomfortable portions of long-term survival.
My truth is that cancer, my rare genetic disorder, pain and living with the awareness of death is transformation. It is a quest. I want an end to blaming and shaming, winning and losing, warring and fighting. I want us to re-imagine and re-create Cancerland, so the next generation finds themselves not in a commercialized, consumerist, survivor storyline, but with an orientation of wonder and awe for the possibility of love, even in this suffering.
I want wholeness, especially in brokenness.
And hands reaching out to catch one another as we tumble into the abyss.
I want this.
(1) Fight Back Fundraising Ideas
(2) Shop By Cancer Color or Cancer Type
(3) How not to say the wrong thing
It works in all kinds of crises -- medical, legal, even existential. It's the 'Ring Theory' of kvetching. The first rule is comfort in, dump out.
Susan Silk and Barry Goldman
April 07, 2013