My outwardly cocky attitude helps me get through the average day, but in the depth of the night, during those occasional moments of wakefulness that people of my non-tender years suffer, I admit to myself: I’m afraid.

Do I fear the Big Sleep? Of course I do, but no more than I did before my diagnosis. Before it became a less, ahhh, distant concern. That’s something we all must deal with, anyway.

I’m afraid of encroaching paralysis, that slow death of a thousand little cuts. I’m afraid of the eventual morning when I can no longer take a shower... shave myself... stand up from the Porcelain Throne... roll myself out of bed... count out my assortment of pills... brush my teeth.

I am afraid of losing my physicality, piece by piece.

Walking is a massive chore now, but I fear the day I will be forced to give it up. Falling is not an option: It is waaaay too hard on my Thinky Parts. Oops - something else to worry about.

I can eat just fine today, thanks to a (mostly) trainable left hand. But there will come a day when my arms and hands become too incompetent for the task, and I will have to depend on others to pack my pie-hole with provender. Already, Dee must cut my steak for me, it being a job for two hands. The idea of being unable to eat unaided terrifies me... and when my capability to swallow becomes compromised, that’s when the real horrorshow will be upon me.

Losing independence. Losing agency. I fear these things. I can drive now, but how much longer can I do it safely?

I am afraid of being a non-person, someone who can no longer look at others performing the myriad actions of work, of leisure, of life, and think: I can do that.

Yes: I am afraid.

But I have too many things to look forward to. And as a good friend has said to me, pain is the sensation of fear leaving the body. Perhaps fear is the sensation of pain leaving the body.


  1. I do not believe you will ever be "a non-person." While care for you in this new way will be daunting, being a part of your Jupiter-sized support network is tantamount (in my mind, at least) to 1,001 aliyot. What an honor, for me, and for anyone who knows you, to be able to do anything that would help you in some way.

    1. My thoughts exactly :-)
      Thanks for saying them...

    2. I'm with Erica. We're all with you. In fact, I've been with you since we were just a couple of years old; when the consciousness of family and cousin-hood dawns on us humans. So never feel alone. I'm glad you are writing this blog

  2. Steve, your personal choice to share this journey has made a hard impact on me. At 64, I have become more attentive to my autumn years. A “Now or never” sort of panicked fear.
    Life is inexplicable, all sorts of mysterious shit without any clue on how to proceed.
    You and Donna have strong community of friends and family. While we can’t walk it for you, we CAN walk it beside you.

  3. “Other than this, how was the play, Mrs. Lincoln?”
    (Because I understand your humor....)

  4. I wish we could take away the fear. We all have it, me especially, but we push it away because it is abstract. You will NEVER be a non person to any of us, but your feelings are valid...and I’m so sad I can’t help.

  5. Hi Steve, this is Rita Breier. Just wanted to let you know that Russ and I are thinking of you! You are a special person and have always enjoyed the times we have spend together in the past. Looking forward to seeing you soon.

  6. Steve:

    We first heard Pete Townshend's words in Tommy in 1972:

    Sickness will surely take the mind
    Where minds can't usually go
    Come on the amazing journey
    And learn all you should know.

    Now you are enabling me to get their true meaning.

  7. You aren't the first person I've known who has taken this trip. But you are certainly the most elequent.

    My other friend was an intensely private person, and didn't want to share what he was going through with anyone (likely he didn't know how).

    If there is a teeny, tiny silver lining here it is that your lifetime of uninhibited exhibitionism - at least in writing - has prepared you for the act of sharing what you are thinking. And your lifetime of shul affiliation has given you the tools to contemplate your mortality.

    Apropos of prayer, I was once told that the repetitive, formulaic nature of prayer is a type of exercise. Most days we really don;t need to pray because things are neither good or bad enough to bother. But daily prayer keeps our hearts and minds fit for times of need... when we really need to pray. Think about the poor, uneducated, unaffiliated Jews who find themselves without the ability to say kaddish or participate in a wedding or circumcision ceremony. Prayer is the vehicle that aims and refines the primal screams and joyful elation of our souls.

    Your lifetime of prayer (regardless of the doubts) - particularly asher yatzar - has made you acutely aware of how delicate and precarious our existence is. You enjoyed good health for many years... but prayer assured that you didn't take it entirely for granted.

    But those who don't know how to pray are rendered inarticulate or mute in the face of joy, pain or fear. They never acquired a template for considering their delicate nature or their mortality.

    But you, my friend, with your regular shul attendance and penchant for oversharing, have inadvertently trained your entire life to enunciate your mortality and reveal your true feelings in a considered and thoughtful (albeit irreverent) manner.

    Just one more thing to be thankful for.


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