I will not kill myself. Instead, I want to remind you, Floris, while you still have the capacity to understand this, that there is healing and insight in being a forgetful being.
I feel empathy towards the main protagonist in the film Still Alice and her reaction to her diagnosis of early onset Alzheimer’s. I understand why she recorded the video to her future self, reminding her to kill herself once she perceives she’s lost all dignity. I get it. It was hard for Alice to let go of her self-concept as a high flying academic.
Remember, Floris, in Still Alice when Alice in the late stages of the disease got distracted by a video recording of her former self instructing her to take an overdose and commit suicide? Wasn’t that a powerful scene?
My first thought was that Alice’s suicide attempt was a tragic failure. I wonder though, did she really fail? On deeper reflection, the Alice with late stage dementia was so other to how she once was, she could no longer retain information long enough to commit suicide, let alone understand why the promise to her former self mattered in the first place. The truth is, Alice was so horrified of who she would become with late stage dementia, she was imposing her will to end her life upon her future self. Alice could not let go of the person she so valued, in order to leave any space to be the person she would become in the later stages of the disease.
Floris, can you accept your future self with dementia? As I understand it, dementia is a process. It is, to demystify the medical label, a slipping into a world of forgetful being-ness. I’m already experiencing memory loss at my age now, and it can be both comforting and terrifying. In my letter to you, I’d like to talk about the comfort and the terror of being a forgetful being.
Let’s start with what’s comforting about forgetting. Forgetting is entangled in remembering yourself in a new way. Forgetting yourself is really about letting go of the person you’ve been clinging onto; so the phoenix of your new self can rise from the ashes. This form of letting go is a kind of forgiving of the self remembered.
Remember, Floris, when you were a young boy? How much you craved to have people laugh at your clowning about at school? Perhaps you confused being popular and making people laugh for being loveable?
Remember, as a young man, Floris, when you wanted a brilliant career as a philosopher? You wanted to be someone of consequence. Perhaps you were still looking for worthiness outside of yourself? I will tell you something that you didn’t know then: you are enough, and always have been.
If I can forgive my past in the present, why can I not forgive my imagined future self with dementia? What about the terror of forgetting yourself Floris? What of Still Alice?
I have one reason for you to feel consoled by the terror of living with dementia; and more that should give hope.
The terror of dementia, what I call the blank, is forgetting it all. Is that really so bad? Because once you forget everything, remembering will no longer matter. Before that happens though the distress of forgetting will come and go.
The second thing I have to offer you is the hope of love. I don’t mean this in a sentimental sense, like I remember the kind and adventurous person you were before your dementia took hold. Or, more authentically, the kind person you may still occasionally be as the disease progresses. I’m sure the Floris before dementia will shine through from time to time, but I don’t want to ‘soft soap’ you; you’re going to be ‘pain’ and challenging to others who live alongside you. You’ll get embarrassed, frustrated and angry. Towards the end especially you may feel really confused and scared at times. What can I say to that? Set up a habit of being kind to yourself and others before you lose your memory in any significant way. It’ll perhaps help later on by rubbing off on how you treat yourself and others around you.
Most of all, surround yourself with kind people who understand they don't need to take your forgetful behaviour personally. The language of love, is about acts of service and appreciation. Find loving carers who innately know that understanding is love. Forgetting is not a failure, it is just another way of being.
The final thing I have to offer you Floris, is the hope and wonder in the present moment. The present moment is all that you ever have. This means you cannot lose or forget it.
The antidote to forgetfulness is presence. It is possible that if you should ever end up with dementia in a care facility, you will periodically touch the present moment in art therapy, or in a piece of music played for you by a loved one. To appreciate the present moment is your connection to being and feeling alive as you are, right now! Dementia cannot take this away.
My initial response to writing this letter was to console and give hope to my future self living with dementia. I have thought of my present self as somehow separate from my future demented self who I have been addressing throughout in the second person as ‘you’ and Floris. On reflection this is another way of separating myself from my possible dreaded future self with dementia. The more I think about the enormity of the present moment, the more I realise how limiting this is.
I know that past and future are already there in the present moment. But when I have dementia my present will not contain so much of the past or the future in it. That'll take some getting used to. Dread arises if I imagine my future self as othered; separate and alone from those that I remember love me. I realised I don't need to imagine this because I have lived with my father who has had vascular dementia. My dad with vascular dementia is in me – in my love for him, and there regardless of his forgetful being-ness. My love for him has set us both free.
If I think about my dad, I remember how angry I was at his re-marriage near the end of his life. I witnessed his new wife re-arranging their joint affairs to her advantage, betraying any long-standing promises made to me and rest of his family. He was not yet so forgetful then. Any righteous indignation I held on to so ferociously then, I began to let go of at the end of my dad’s life.
I vividly remember sitting in a restaurant near his home in Deventer (in the Netherlands) laughing, laughing, about something that only he and I found funny. The joy I felt with him transcended any historic bitterness I still held towards him and his new wife. As for my Dad, once he had late stage dementia he’d pretty much forgotten it all anyway; his young boy was much freer than ever.
In that moment we were both so young.
Floris Tomasini is a hypnotherapist and applied philosopher.