Unreachable

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My father’s parents both died before he turned ten years old. He essentially grew up as an orphan, and yet he was the happiest person I’ve ever known. At the age of seventy-nine, he simply refused to believe that the cancer eating away at his jaw would ever claim him. “A bump in the road” was the way he softly described the recurrence of his illness to me on the phone.

Five days before his death, he got out of his hospice bed, wobbling as he put on his pants, and announced that he needed to “go back to work.” I still believe he went to his death pissed off that he didn’t get one more day.

My former husband was raised by two of the most brilliant and charismatic parents I’ve ever known. They were movie-star gorgeous and equipped with languages and experiences I could only imagine. David traveled the world, ran a successful building company, and earned the most profound love of his life, our daughter. He skied, hunted, and fished. And he killed himself at the age of fifty-three.

What makes one person fight for every breath and another take his own life? Brain illness. There are a lot of theories about why people experience brain illnesses. In my time searching for answers, I’ve heard neurologists discuss disruptions in the brain while naturopaths point to an inflammation of the gut. I’ve seen behavioral therapists declare it is the result of a lack of meaningful relationships and a flawed, negative thought process. Psychiatrists talk about past traumas and a problem with chemical regulation.

I’m not a doctor, and I don’t pretend to know which of the disciplines will eventually be proven right, but I have a hunch. They are all right. As human beings, we are holistic beings. The interconnectivity of our genetics, our diet, our sleep patterns, and our past traumas create a delicate and sometimes disastrous dance. Everything I’ve read suggests resilience comes from a healthy lifestyle, meaningful relationships, experiences like yoga and mindfulness that draw you inward, and a dedicated perspective that allows you to believe things will get better.

My father’s body was racked with disease when he joked with me about who should control the remote. “From now on, I watch what I want,” he laughed. “I have cancer. You have to be nice to me.” When his oncologist flatly told him there had been a mistake on the tests and he’d better start putting his affairs in order, it was as if my father suddenly developed hearing loss. He refused to believe anyone was going to end his party.

David pulled away from us in the early stages of his brain illness and refused to share concerns about his lethargy, irritability, and confusion. He was, after all, a dignified man who rarely asked for help. When he was finally diagnosed with Bipolar II, it was as if his family, his work, and any semblance of a life that might have sustained him through his illness no longer mattered. He simply couldn’t bear the darkness that descended on his brain.

What mechanism allows one person to fight for every breath, even as their body is racked with a biological illness, and the other to end their life before they even get gray hair? I’d love to hear your thoughts.

“Look to the living, love them and hold on.” Douglas Dunn

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10 replies
  1. Lee Weinstein
    Lee Weinstein says:

    “Brain illness” is so much better than “mental illness.” We know so little still about what causes illnesses like David’s — and the 26.2 percent of Americans who suffer from brain illness. One in four adults: we are all around each other. We need to get this in the light and talk about it and improve our care and understanding.

    Reply
    • Sheila hamilton
      Sheila hamilton says:

      Lee,
      Thank you for being my partner in compassion on this one. Love you and that beautiful wife of yours.

      Sheila

      Reply
  2. Tina L Jaynes
    Tina L Jaynes says:

    Dance indeed…….I agree with you that it is all of the above and it is balance but to get to the balance and have yourself intact is indeed the dance. Fear of losing, fear of gaining, fear of darkness and fear of the bright light, up, down, over and over you tumble until you see, sometimes holding your eyelids open yourself. I honestly do not know to this day that I understand my brain but I am in charge, that I know, not an organ who can flip on a dime, sink in an instant, or tempt me to leave this beautiful place. I am 57 years old and I consider that to be a gift, it has taken patience, patience, patience and learning to accept my emotional being as part of who I am but not in charge of who I am. Yoga, meditation, walking, having a journal, having a therapist, being honest with myself and those around me, retreating when I need to, blossoming when I am ready to, just pushing through the extremely complicated pathways and enjoying the ride for what it is! :))

    Reply
    • Sheila hamilton
      Sheila hamilton says:

      Tina,

      You describe the work of being a fully alive human being so eloquently. Thanks for sticking around and getting through the hard stuff.

      Sheila

      Reply
  3. Marlene Carlson
    Marlene Carlson says:

    As one who works for a hospice organization in Oregon, and with family members who truly suffer from brain illness but have not yet opted for suicide, I have experienced the paradox you describe in this blog. We have no choice but to hold these very different end-of-life situations simultaneously, recognizing that there is commonality between a death from suicide and one from natural causes. The common outcome for us as survivors is loss and grief that lingers and informs our own choices. There are now studies being conducted to determine if grief itself should be treated as a disease. We are all searching for clarity because, quite simply, dying matters. Dying informs how we live, how we understand/integrate choices in our lives that allow us to make the rest of our life count. Last week, I came across an obituary written by a 44-year-old woman just prior to her own death (from cancer). I’m linking it here, but the paragraph that stood out for me provides a very precious perspective: “…cancer does not care who it takes, who it hurts… It comes into your life and starts to break the threads that hold you and you are left to see pieces of yourself slip away and dreams fade. We were clung only to each other with pure love and faith binding us. In the end is when the most amazing thing happens–cancer loses its strength and grace appears. We need to see it. We accept it, and go with it. Grace and love win, not cancer.” http://www.legacy.com/obituaries/telegram/obituary.aspx?n=beth-orourke&pid=174657268& I’m wondering if those whose brain illness causes them to contemplate/complete suicide would also speak of “grace and love winning” in the end? My personal belief is that we should afford the person who takes their own life with the same dignity and respect that we give to the person who “fought a brave battle” before dying naturally. Lots of random thoughts here, but wanted to respond to your very thoughtful and thought-provoking piece.

    Reply
  4. Jennifer O'Brien
    Jennifer O'Brien says:

    Sheila- You’re doing a beautiful job of making sense of this terrible disease. So glad you’re so brave and sharing your story. And so glad to hear “brain illness” term being used. Keep on….

    Reply
  5. Wolf Bailey
    Wolf Bailey says:

    Hello Shelia,
    I sometiimes wonder at how we are directed to some place in time amd space that we probably would have never traveled to on our own. I feel that is what has happened to me tonight in finding your blog. I have a brain tummor that I am weighting the options or havimg risky surgery or not. I live in Oregon and here we have a law call the Death With Dignity Act. It allows a person, when the pain become to great to bear, that person can choose to have a “cocktail” attached to their I.V. and the ill person is ready he/she pushes a button and it is over. I had until two days agoj opted to have the surgery and take my chances. But over the past year my entier support system fell apart. Two of them died of cancer, two moved away, leaviing me with one person left to talk and discuss thimgs with. I am a introvert and have a fear of getting to close to people. as when I was in the Nam I lost every buddy I went over there with and it badly scared me and I dom’t let mamy people get close. A few days ago, what I felt like what was my last, best, and most trusted friiend and I for some reaosn ended up in a serious disageement. I must have hurt this peron really badly as she knows my condition, knows that she is the last person in my support system and yet she told me through her husband that she did not every want to see me again or to hear from me again. You wondered about sucide, I can only tell you from my stand point right now, that it seems the lesser of two evils. I feel totally alone in the world, that I have no to turn to and even feel that God has turned His face away from me. I have truly and finally understood what Christ meant when hainging from the cross he turned his face towards the heavens and uttered, “My God, My God, why has thou forsaken me”? Sucide thought for me, is the fear of dying alone, no one there to pat my head and say to me,”it’s ok Wolf, you can let go now, it’s time”. So I consider ending my life before I have to lay on a hospital bed, in an empty room, alone, no God, no family, no one. And that makes sucide on my own terms seem less frightening.
    I know that I may not have expressed myself ver well here, as I am quite emotional, but wanted to give you some insight from someone who is truly at that point and …. thanks.

    Reply
    • Sheila Hamilton
      Sheila Hamilton says:

      Hi Wolf,
      I’m not a therapist, nor a doctor, but I’m human, and your life matters. Lines for Life in Oregon has a special line for Veterans, with loads of resources to be able to help you. Would you please call 800-273-8255 (273-TALK) Praying for you and telling you recovery is possible.
      Sheila

      Reply

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