The Cult of Optimism; or, Openheart

Optimism when chronically ill is like a cult. You just show up one day and decide to be optimistic. Because you are optimistic, everyone around you is also optimistic, and for a while, that makes it seem like things will be fine. Optimism is a reflex when presenting with a protracted, terrible situation. It is a defense mechanism, a sort of emotional shock that allows us to move forward.

But optimism is also a distraction, a slight of hand. It draws your attention away from the seedy underbelly of this type of thinking. When we are alone, we sit with the nameless fears we don’t share lest we shatter this illusion of positivity. You’re not supposed to talk about the bad things that could happen when you’re part of this cult.

A lot of us are worse off than we tell people, sometimes even people close to us. There are words we can’t give shape to. A sentence we type and delete.


And over.

When things started getting bad, I decided that I couldn’t control what happened, but I could control people’s expectations. I think I will be fine, but that doesn’t mean I will be. The wrong med during surgery, undercooked egg whites, a bad car accident that triggers anaphylaxis. The night is dark and full of terrors, and all that.

Believing I will survive won’t make me live longer. I can’t control that. But I can control whether or not people are surprised if something happens to me, and I don’t ever want them to be surprised. I don’t ever want anybody to say that they didn’t know how bad it was. It’s painful for me to lay it all out for them, to say the words, to share the risks. But not doing this feels like treason.

We live in a world of secondhand information, where people so often don’t remember how they know things. It makes so much of medicine and disease impersonal, removed. When someone wonders about what it’s like to live with chronic disease, I don’t want them to read emotionless facts and statistics. I want them to read this and feel my heart bleeding across the screen.

I want them to know that we’re optimistic while being scared, that being optimistic makes it easier to be alive with a disease like mine. I want them to know that optimism is a sort of bet, borrowing against a future we know might not exist. I want them to know that optimism doesn’t save lives.

A couple of days ago, a friend of a friend died as a result of chronic illness. He had many heart surgeries throughout this life, so many that he was known as Openheart Dave.   He was in this cult of optimism, too.



4 Responses

  1. Kathy January 17, 2015 / 5:58 pm

    I guess I am an eternal optimist. In a room full of poo, I’m looking for the pony. And I have some strange Mast Cell thingy which causes me to have random attacks of anaphylaxis IN SPITE of trying to do everything right. Oh, well. Most of the time, I’m not in pain. I might be tired, but I don’t hurt. I’ve had “that” discussion with my family. So far, I’ve survived my attacks, thanks to the fine makers of epi-pens. But one day, I might not. I remember thinking very clearly during my first attack, “I’m dying”…and I was OK with that. It is, as these things go, fast. Easy. And if I do go that way, I want my family and the people I love to be happy for me. I hope it is a ways off, though. There are still a few things I would like to do with this life. Hey, I am hoping to participate in a protocol at the NIH on Idiopathic Anaphylaxis. I’ve sent them my records, and have had several phone and email interviews. It looks good! If selected, I get to go to Bethesda and be poked and prodded, and even get a Bone Marrow Biopsy! If I don’t have mastocytosis, or any other definite condition they can pinpoint as the cause, I get a 50-50 chance of being a human guinea pig for whatever med they are testing. It might work! It might not. But if I can somehow be a step towards figuring out this confounding condition, I want to be that step.

    Thinking good thoughts for all my fellow strugglers.

  2. Camille January 18, 2015 / 10:11 pm

    So very, very true. I’m the same. I try to go day by day. Don’t focus on what ifs but honest and open. Just focusing on what has to happen today to keep moving forward. I’m trying to keep up. Trying to at least maintain my level of not-so-healthy but every year I slide a little further back. Sometimes it is a landslide back sometimes it is subtle but never as good and never once better since my train became unhealthy went completely completly off the tracks. I’ve adjusted realty that I’ll never get back to where I was… That ship sailed away a decade ago…

  3. Yvonne January 20, 2015 / 12:11 pm

    Your words are so powerful and cut so quick to the truth.
    I lost an uncle and due to my optimism he died without saying goodbye. That was my first lesson long ago, with the cult of optimism.
    I am trying to be less dismissive and acknowledge the bad. I have to say that it has greatly improved the quality of my life. Since by acknowledging the bad, we can then try to change or adapt. This is the second challenge and sometimes feels fruitless. But eventually I think people may find some peace. My mother in law has ALS and she is a model of finding peace and yet is living her life to the maximum. She is wonderful.
    I hope you find peace and yet strive to the max!

  4. Sean-Michael August 18, 2015 / 12:11 pm

    I hear you. And I am glad you are being open and honest. I do want to say that I think some positivity and hope and even optimism does have its place. Denial is where people get into problems. Many times people use a fake optimism as a form of denial to themselves and others that we are as sick as we are. Some people want this. They don’t want to hear “this surgery is normally quick and easy but is potentially life threatening in my case. They don’t want to hear our truth.

    That’s a sad form of denial some people use to cope wether they are another mast cell patient or not. I wish people would sit with that truth when I share it rather than denying it or cutting me off. I’m not being pessimistic when I say it, I am facing reality and entrusting them with my truth. The truth I and others like me live with daily. Any new medication, any surgery even “minor” procedures can be life threatening.

    So I would add that although I am in general an upbeat and positive person, I’d Like people to sit with that truth when I share it. Don’t brush it off or interrupt me to reassure me with false platitudes, sit with it. Acknowledge my truth, and listen because usually the reason I am sharing it is because I have something I want to say just in case I’m not around to say it in person later. No one wants to hear those words, but if I died in surgery or from some random anaphylaxis or what not, they would wish they had let me finish my sentence and tell them how much I love and appreciate them. Or however that conversation was intended to go.

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