Progressive Memory Loss

Progressive Memory Loss - Using progressive eyeglasses, Robin botie of Ithaca, New York, photoshops multiple images of storyteller Regi Carpenter who suffered memory losses before her decent into mental illness.“I TOLD you these progressive glasses would not be easy to get used to. DON’T you remember?” the woman at the optician’s sounded defensive.
“Well, I have no memory of-,” I stopped. I couldn’t argue. “Thanks anyway,” I said curtly, and left before I could explode.
The truth is anyone can tell me she told me something, anything, and I would not be able to say for certain whether she did or did not. The only things I remember for sure are the blue veins like tiny trees on my daughter’s lavender eyelids as she lay unconscious in the ICU four years ago. And her red-painted toenails. And the invincible feeling that Marika could endlessly pull off miracles each time she almost lost her life. And then I remember the crushing words from the doctors that finally compelled me to put down the Ken Follett novel I was reading and memorize my daughter’s face instead.

“I don’t remember any of it,” I said to Jill Swenson, book development agent, a year after my daughter died, when I’d written a long love-letter to Marika thinking I was writing a memoir about our journey through the wilds of cancer.
“If you can’t remember the facts of what happened, you can’t write a memoir,” Jill said, smiling incredulously. Then, queasy with headaches, I kicked myself to read through my daughter’s blog posts, paperwork from the hospital, my sister’s weekly email newsletters from the bleak days of cancer, and my own daily-calendar books, to whack my memory back. Soon there were enough memories to fuel three years of writing, 200 pages, and 60,800 words. Ratted-up tissues littered the floor and my eyes turned red as all the things I wanted to forget rewound and replayed in my head.

Recently I attended Snap!, a true story of a young woman’s decent into mental illness, written and performed by Ithaca storyteller Regi Carpenter. Before she got locked up in a state mental hospital, losing chunks of her memory was Regi’s first sign that something was wrong. So sometimes I wonder if I am losing my mind.
I am not afraid of being crazy. Writing down what I want to remember now, I am not afraid of forgetting what I ate or what I read or was told. What I AM afraid of is being hurtful to another. Because I’ve learned that what life throws at you hurts enough without people adding to it.

“I will make these work,” I stubbornly tell myself, repositioning the progressive eyeglasses and my chin over tiny print. I’ve survived the death of my daughter. I’ve been through hell and back; I can do anything now.
Warning: I will walk out on you if you say to me, “DON’T you remember?”


Is memory loss a symptom of grief and does anyone else suffer from this?

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12 thoughts on “Progressive Memory Loss

  1. Lynne Taetzsch

    Robin, I experience plenty of “memory” problems. Just yesterday I lost a check a few minutes after writing it and swore it was nowhere in the house–until I found it this morning.

    I kept journals when Adrian was going through his Alzheimer’s and other problems, and when I started to write a play about our experience, I went back to those journals to find the facts. The emotions were all too present, and it was painful reading through the experiences again in the journal.

    I’m glad you found a way to remember so that you could write your memoir–it’s a gift to the rest of us.

    1. Robin Botie Post author

      Oh Lynne, I can hardly imagine the pain of reading your own journals from Adrian’s difficult times. My own daily-calendar notes showed little of the emotions I was experiencing during “the times.” Just reading the cold facts in the entries of where we were and what we were doing on those days was enough to trigger heartache. You were REALLY brave to go back to all that. Did you ever finish the play? Count me in if you ever want to share or have a reader or even act out the play. Inviting pain, maybe daring the pain, is healing. But I think you know that. Many thanks.

  2. Elaine Mansfield

    I won’t say a word, Robin. I have a few people I call when I need to remember when something happened or where I was when that thing happened. I think I’m still not altogether here, not al the time. Sometimes one foot is on the other side trying to be with Vic and one here in this hazy way. Sending us both love, clarity, and patience.

    1. Robin Botie Post author

      Elaine, you said it so perfectly. As you always do. “One foot is on the other side…” is something I can relate to. Love, clarity and patience to you too. Especially in this season where it takes a lot of bravery and special glasses to see and hang onto these.

  3. Suzanne Anderson

    Robin, What a touching statement. One with which most of us bereaved parents can strongly identify. Of course, memory loss is a symptom of grief, and most of us go through serious self-examination wondering if we are prematurely demented or truly losing our minds. Even presenting yourself with the task of writing a memoir about your experience is such a brave undertaking! And reading through all the painful reminders of those days, the impersonal lab test results to the email correspondence, is also a courageous endeavor, and, though agonizing, one that will probably reward you richly. Remember those eyelids, though, they will remain with your forever and connect you to Marika for the rest of your life! And good luck with those glasses!
    Love, Suzanne

    1. Robin Botie Post author

      Thank you so much, Suzanne. Sometimes I wonder: when the memory goes, what will be the last things we remember? I’m sure it will not be the names or the dates or even the stories. But the images, like those eyelids over the eyes we watched and knew so well and loved, will probably be with us to the end. So I’m putting my glasses on and plan to watch carefully now – all the rest of the beautiful world around me.

  4. Jill Swenson

    Memory is a tricky thing, Robin. I don’t remember smiling incredulously or saying those words in that way. Perhaps I did. It’s your memory, not mine.

    In that first year of grief after losing a loved one I remember how difficult it was to sort through facts and feelings surrounding death. I do remember being deeply touched by Marika’s story and your pain. I do recall suggesting perhaps your push toward publication might be premature and that grief has its own calendar.

    Keeping what is near and what is far away in focus are what progressive lenses help you do. With a period of readjustment your new glasses will be your new “normal.”

    1. Robin Botie Post author

      I have a lot to thank you for, Jill. You are the one who taught me to write memoir. Before I met you I didn’t understand what a memoir was or could be, let alone how to construct one. Also, I didn’t know that my words could move someone who never even met my daughter. And mostly, because of your words and the look on your face after you read my first draft, because you made me see that what I had written was a long letter to my daughter (and definitely not a memoir), I kicked myself to go back to all the resources I’d been afraid to face, to find the facts of what had happened. In addition to allowing me to write a real memoir, this has helped me to heal. With or without my glasses on, I know who I owe my progress to. Cheers to you, Jill.

  5. Nicole

    “I am not afraid of being crazy”

    “I can do anything now”

    I love how honest you can be through your writing now. How emotional and raw. Well done.

    1. Robin Botie Post author

      Thank you, Nicole. This is something I’m working on and it’s so hard. So it’s cheered me to get your compliments. Many thanks.


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