Chronic Not Curable

Of all my favorite heresies, mental self-determination probably tops the list. I am what I choose to be. Most of the primary spiritual experiences of my life had been framed in that language: I had made a saving decision. I had answered the door when Jesus knocked. I had remained steadfastly annoyed by my Reformed friends who wanted their God to choose them before the foundations of the earth were laid. I was a Christian because of the power of my own mind to turn it toward heavenly matters and allow God to begin a work on me. Nor, as a Canadian, was I immune to the American Dream which tells us that our fate lies in our own hands and that we can take destiny by the scruff of the neck and give it a good shake until we get what we deserve. But after my cancer diagnosis, the word “choice” no longer had the same allure. Rogue cells in my body were multiplying without my consent. I was not the dauntless self-determining captain of my ship that I had imagined myself to be.

On the Everything Happens podcast, we have been developing language to understand those things in life which we don’t choose. We are now launching the Everything Happens book club with John Green’s Turtles All the Way Down which introduces us to Ava, an adolescent girl with Obsessive Compulsive Disorder and severe anxiety. Her story will ask us to consider the truth of the Arthur Schopenhauer quote which begins the novel: “Man can do what he wills, but he cannot will what he wills.” Turtles All the Way Down is a book for people who have been gifted with a life-altering curse, for those people—family, friends, therapists—who try to succor them; and, of course, it is a book for the rest of us, to help understand the challenges faced by the neurodiverse people we encounter in our own lives. Virginia Woolf was right in saying that when it comes to describing pain, we are always at a loss for the correct language, and Green’s work gives us a chance to imagine the constant tormenting presence of a thorn in the mind of a sufferer. “Please just let me out,” cries Aza. “Whoever is authoring me, let me up out of this. Anything to be out of this.”

What is like to be unable to control your thoughts? How can one live, perpetually at the mercy of obsessive and self-destructive notions that come unbidden? How can a girl in the throes of adolescence handle grief, first love, friendships, and school while enveloped in a never-lifting cloud of anxiety? There are no easy cures for Aza, or for most of us carrying a burden we never asked for.

The novel speaks to the profoundest questions we ask as Christians—who are we, really, in this universe? To what extent are we are own mental masters, able to choose our deeds and thoughts? This is a particularly compelling issue for those who are suffering memory loss or sliding into dementia or whose bodies and brains are altered by disease or by the drugs and treatments we undergo to fight these diseases. Who are we—really—when a pill makes us act like somebody else? Is there a genuine Me, known and preserved by God, even though I may be clinically depressed, raving, or lost in the depths of Alzheimer’s? To what personality will I be restored when I have run my earthly race and, at last, have been embraced by my Master?

So I hope you’ll consider joining me in reading along for The Everything Happens Book Club as we weigh the things we carry, and look for the love we need to carry on. Click here to find discussion questions, bonus resources, and more.

If you’re reading alongside us (or even if you aren’t!), I’d love to have you answer this question in the comments below:

Aza says, “You think you’re the painter, but you’re the canvas” (2). Do you ever feel that way? How much control do you feel you have over the narrative of your life?

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13 Comments

  1. Thanks for that interview with John Green. It was wonderful. As a person whose life was dramatically altered from a brain injury, I can really relate to so much of what the two of you said. The “only way is through” posters should have a picture of blackberry brambles and thigh high juniper bushes. That is more of what it is like. I’ve been kind of afraid to read “Turtles All the Way Down” but now I will read it . . .

    1. Elisa,
      Thanks for your kind words and and hilarious solution to the “only way is through” poster. Blackberry brambles and juniper bushes sounds about right! I hope you can join us in reading Turtles this month. Your experience will surely add to the breadth and depth of the conversation.
      Best,
      Kilpy
      Team Everything Happens

    2. Lynette,
      Thanks for your thoughtful response to Kate’s article. It sounds like you have encountered and carried some things in life which have given you perspective on control (or the absence of it!). It’s helpful to hear your take and I hope you keep contributing to these conversations.
      Best,
      Kilpy
      Team Everything Happens

    3. Daniel,
      I’m really grateful you shared a part of your story with us and offered up your own questions with such vulnerability. It’s wonderful to hear how Kate’s book and the Book Club pick have both been helpful for you. I hope you will stay plugged in and continue to offer up your wisdom, continuing to amaze us all with your lovely British vocabulary!
      Best,
      Kilpy
      Team Everything Happens

  2. Thanks so much for starting this book club. Your own book was massive for me in working through coming to terms with my ME diagnosis last year and making sense of a failing faith.
    I’m so glad you introduced me to this book (turtles all the way down). It certainly wasn’t the sort of book I’d have chosen to read as a bloke, but I find myself reading it in about 30 hours!
    As a social worker who has ended up doing a lot of work with teenage girls, I found that the author had captured Aza so well.
    My ME has meant that I cannot work and have become a stay at home dad. My condition seems to evolve with new symptoms arriving.
    Over the last couple of months I’ve developed tremors in my hands, arms, legs, face and head which come and go.
    I’ve thought a lot about this sense of losing control of my own body. It may mean that I have to stop driving.
    For your arm to shake, but not be able to tell it to stop is disconcerting and opens up wider questions about free will and determination.
    To see Aza wrestle with these same things but in a different context was very timely for me. I’m learning to rest into the questions and live in the present more, accepting that I don’t have the answers I’d rather freeing.
    Thanks again, from Northern England.
    (I spent a year in Winnipeg in 2000. Your book brought back a lot of memories!)

  3. Control is something my own anxiety is always fruitlessly grasping to get a grip on. Whether the long ago unexpected loss of my mother when she was only 57 to the diagnosis of severe mental illness my son received over fifteen years ago, control is an illusion and all we can do is work on our own response and try to keep moving forward

  4. ‘face the darkness’, #2: critique of optimism/idealism-as-Neoplatonic/prosperity: the goal is total impartiality, free of sentiment (index, p. 135) and affectivity (index, p. 146-52). p. 164, “I construct an ideal image in order to be able to pronounce a judgement the need for which I feel beforehand. The SUFFERING which my temporal limitation inflicts on me awakens a doubt concerning my ‘being’, and releases the need of evaluating myself, of judging myself; and thereafter releases the process of constructing an ideal image-criterion that I shall be able to copy, hoping thus to obtain my absolution. …the suffering within my temporal limitation… that I ought not to be temporarily limited….I pretend that I should never be denied by a Not-Self [e.g., illness ‘out there’]…I doubt my pretension…I construct an ideal image I can copy in order to obtain my absolution,” Supreme Doctrine, Benoit, 3rd, 1960. Even worse, as head of a cult, I become this ideal image for others.

  5. ‘face the darkness’, #2: critique of optimism/idealism-as-Neoplatonic/prosperity: the goal is total impartiality, free of sentiment (index, p. 135) and affectivity (index, p. 146-52). p. 164, “I construct an ideal image in order to be able to pronounce a judgement the need for which I feel beforehand. The SUFFERING which my temporal limitation inflicts on me awakens a doubt concerning my ‘being’, and releases the need of evaluating myself, of judging myself; and thereafter releases the process of constructing an ideal image-criterion that I shall be able to copy, hoping thus to obtain my absolution. …the suffering within my temporal limitation… that I ought not to be temporarily limited….I pretend that I should never be denied by a Not-Self [e.g., illness ‘out there’]…I doubt my pretension…I construct an ideal image I can copy in order to obtain my absolution,” Supreme Doctrine, Benoit, 3rd, 1960. Even worse, as head of a cult, I become this ideal image for others.

  6. ‘face the darkness”, #3, the goal is to suffer without ruminating, p. 144: In the Catholic confessional, the ‘sin’ is felt with strong emotion, as if paralyzed by it, then is ‘given up’. In AA ’90 meetings in 90 days’, each day I sincerely feel ‘I am an alcoholic’ and ‘give it up’ to the group-as-confessors. In Scientology I grasp 2 wires for 100 hours and emotionally relive a trauma until its energy = motion has been exhausted. “without perpetuating my suffering, I SACRIFICE my suffering” and store up the now-freed energy I have been wasting in rumination. Goal: the suffering is no longer OPPOSED with ‘will power’ (with false optimism). Instead: ‘thy will be done’. Personal hope changes to impartial Hope. In practice I let the tiger eat me. I am safe only in its jaws. I freeze a river flowing in me by immobilizing myself as on a cold, hard couch, with my inner attention fixed on totally being the problem, not opposing it. Poverty cannot be opposed, it must be embraced. In Dzogchen, Li is the cold, dark, immobile ‘ground’, Rigpa, in the ROOT of the tree. There can be no escape ‘up’ (= idealism) to light, warmth, or prosperity–the secret of St. Teresa and the seemingly morbid Christianity of her time.

  7. My life doesn’t feel like something that has been controlled by me, and it never has. I see so many folks around me who have been dealt a crap hand, and forced to ‘make do’ as best they can with the burdens of ill health; where is their control? A recent experience of multiple deaths in a short span of time in my immediate family have brought that subject to the forefront, and left me questioning “Am I next? How soon?” Which makes it very tempting to stop aspiring to anything but getting through each day. This can be somewhat terrifying. Kate’s sharing in dealing with her own struggles is inspirational, just knowing others are dealing with unpleasant stuff helps a little. Life is tough, a daily battle… if we really did have control, I don’t think it would be this hard.

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