aqilokoq: softly falling snow

 Part of me just assumed I would get old and die a grandmother, a great-grandmother.  I would be old and small and round, and bake cookies and write poetry and insist upon certain grammar rules.  I would magically have a house by the sea, and I would die in a magically white bedroom, with the white linen curtains blowing in the gentle wind, and the sound of the waves breaking on the sand.  I wouldn't be worried about climate change and no one with the last name Trump would be president.  

Before I got sick, I tried to think my worries into protection--I bet you do this, too.  If I could conceive of it, that would somehow protect me and my children from "it" actually happening.  If one of the kids was late coming home in high school, I would lie in the dark and imagine how their inevitable death by [drunk driver, serial killer, choking on a large piece of apple (I can't quite lose my anxiety about this one, despite the fact that my youngest are now certainly old enough to manage apples, and my eldest is 30)] would play out--the knock at the door, the phone ringing in the night.  I would imagine telling the other children, my parents.  I would imagine my strength at the funeral.  It was a disturbing habit, but I engaged in it because somewhere in me I thought if I imagined it, I could protect all of us from the worst.

Unfortunately, I never imagined stage-four cancer, which I guess proves my method wasn't complete madness.  Or perhaps it just demonstrates a dearth of imagination.  I just wasn't paying attention to cancer, until cancer paid attention to me.  

Now that I'm a full-on, card-carrying member of cancer world, I sometimes end up in conversations with other cancer people about how non-cancer people just don't get what we are going through. Everything happens for a reason.  You got this. You will beat this.  You're a fighter. God doesn't give us more than we can handle.

Some of that is just the pure, definitional human problem of not being able to see beyond the boundaries of our own bodies, souls and minds.  You can't be in my shoes, no matter how many times a parent may have admonished you to try.  You can empathize, you can go through something similar--I think that last one helps.  I think experiencing great loss, grief, chronic illness, sudden and tragic death, lands you in a big, empathetic club.  But it turns out there are also all these further narrowed clubs--the club of people who have lost a child, the club of people who have lost a mother, the club of people with Alzheimers, the club of people whose parent has Alzheimers.  We can't know the specific pain and grief and fear and terror of another person any more than we can understand how they fell in love with Joe, or mothered Hannah.  But we can approximate if we have traveled through the vale ourselves. We can get close. But we are ourselves, after all, in the end.

Some of the communication trouble stems from the warrior model of fighting serious illness that dominates our discourse.  Well-meaning people we love talk to us of fighting, of not giving up, of being strong and beautiful and fearless as we head off on our horses to the cancer crusades.  When someone tells me not to let cancer beat me, I wonder how optimism and hope got so intertwined.  I know what my diagnosis means, which is not to say that I don't hope for more novel treatments, for more walking and talking and reading and loving, or that I don't hope for things larger than myself--like climate recovery and regeneration, like income equality, like less violence.  But I can't say I'm optimistic, really, on any front.  I know I have six months, or a year, or two years to live, and I know that it is not. in. my. power. to beat cancer.  No amount of carrot juice, positive thinking, turmeric supplements, religion, or best choices are going to stop cancer for me.

Some of it is that we don't have enough words for pain, for fatigue.  I want words to describe the heaviness in my bones, the fogginess of my thinking, the loss of the schedule and the narrative panic, the weariness of simply moving my body. Bone sleep. Brain moss. Purpose murk. Quicksandedness.

I've become a little stuck on worrying about fatigue of late.  Worrying that when I lie down in the middle of the afternoon, or fifteen minutes after my last nap, or go to bed at 6 pm, that I am being lazy.  Or, perhaps worse, perceived as being lazy.  I'm still defining myself [I'm trying to redefine, but it's impossible to escape the language within which I was born, the system, the panopticon, for Pete's sake] in terms of productivity and efficiency and energy and goals.  And damn it, what do I have to show for myself at the end of the day? (It helps when I bake, because I can point to an actual object.  There.  Six-grain bread.  That's what I have to show for myself.)  

You know the thing they say about Eskimos having thirty-two words for snow (or is that fifty words for snow and thirty-two flavors of Baskin Robbins ice cream)? There is jet-lag tired.  There is post all-nighter tired.  There is hangover tired.  There is newborn baby tired.  There is cancer tired.  

Cancer tired cannot be alleviated by rest.  It's a fatigue that is bred in the bone, deep roots, don't ask me to stand up tired.  I really want my closest people to understand cancer tired so they understand why I am taking a nap after my nap, when children need to be fed, and dogs need to be walked, and the dryer panel has this light named d80, which is an error message meaning your clothes are weighted too much on one side or the other and you need to move stuff around and curse and turn the dryer back on.  Where is Tracy? Sound asleep.

Really, what I need is to trust myself and know that my loved ones trust me.  They know I'm not trying to get out of the quiz by putting the thermometer near a hot light.  This is for real.  This is for all the marbles.

Maybe all the sub-clubs aren't the most significant clubs.  It's true that I am held by my metastatic support group in ways that I probably couldn't be held by people in the stage 1 or 2 breast cancer group because there is no end to the chemo here, no bell to be rung at the end of treatment, no scans every year, then every three years.  This version of cancer is intense, until it isn't. But there is a fellowship of pain most of us belong to and if we have traveled through loss and grieving, whatever the sort, we may have emerged with the understanding that there is very little to say to fix anything; instead there is a kind of generous listening, the showing up not once but again and again, the practical help of sending groceries or driving to pick up prescriptions or taking the boys camping or bringing hydrangeas or walking around the bog again and again, or texting at midnight and three a.m. and 7 a.m. on a tough night.  A kind of calm, open, loving way of being present and staying present that is beyond the specifics of any kind of cancer or tragedy. 

You know who you are.  You are a blessing to the people you love.

The war on cancer was formally declared in this country when I was five years old.  President Nixon, in his 1971 State of the Union address, said: "I will also ask for an appropriation of an extra $100 million to launch an intensive campaign to find a cure for cancer, and I will ask later for whatever additional funds can effectively be used. The time has come in America when the same kind of concentrated effort that split the atom and took man to the moon should be turned toward conquering this dread disease. Let us make a total national commitment to achieve this goal."

Oh, Nixon.  Oh, us. What can we get for $100 million and the correct mind-set?  

A lot, actually.  I can't imagine what we have spent, but so many of us have been given a gift of time, and of relatively pain-free time at that, specifically because of medical research, because of dollars. Wild profits and insane drug prices and unfair insurance practices, and inequity between people, yes. 

 But oh, the time.  The lives.

It's not a war, where doctors are the soldiers and people with cancer are the dead and malignant wild cells are the enemy.  After all, cancer is me, gone terribly awry.  After all, my role is not simply to thrive or fail under certain medical treatments.  After all, we all die.  We can't win a fight against death because death is what gives life to living. And we are all paddling down the same river, going home.  But we can give up chasing futures and turn our attention to the life we have: I can stop mourning my plans for grandmothering and combing my white hair by the sea, which is not to say give up hope. The life I have is the lodestar for the life I will live.  A redoubling of attentiveness to the ordinary life I have been gifted is called forth--the goldendoodle, the beloved quirky children, the six-grain bread, the unfinished sweater, the evening walk tonight under the waning harvest moon.