The Worst Loss of All

I’ve often wondered how people feel when a movie or a book touches a raw part of them. What it might be like to watch or read a story that cuts into you with a searing hot blade. Now I know.

For months, I avoided watching the movie. The mere idea of it was anguish-inducing. I’d watch the trailer from time to time and be both fascinated and repulsed by it. It was hitting too close to home.

The movie*? Still Alice. The story is about Alice Howland, a woman who has it all. Alice is a world-renowned fifty-year-old university professor specializing in linguistics. She and her equally-successful husband have three grown girls. And she has early-onset Alzheimer’s. The disease quickly robs her of faculties, her relationships, and of her identity as a teacher, a mother and a wife.

Too Close To Home

Alice is my mother. The parallels are unsettling: my mother was a very bright woman with a love of language. She devoured books, was an avid crossword puzzle solver—cryptics were her favourite, she was unbeatable at Scrabble and she excelled in a field few can master: simultaneous translation. She found her work stimulating and exciting. And she was diagnosed with early-onset Alzheimer's in her mid-fifties. 

I’m proud of my mother’s accomplishments. Now age sixty-two, my mother is still with us in body, but her spirit is quickly vanishing as her mind becomes increasingly riddled with disease. She can be kind and she can be cruel. She can be lucid and she can be confused. She can share our reality and she can be suffering from paranoid delusions. She can feel happy and she can feel anguish. 

Watching a person you love lose her sense of self is agonizing. What makes it worse is that she was diagnosed at an age when she was supposed to reap the rewards of having built the life of her dreams. I can only imagine the torture she feels, knowing her abilities are vanishing at an ever-quickening pace. She’s witnessing the essence of who she is slip away and there’s nothing she can do to stop it. 

Some days, she can’t find the right words to express herself. Other days, she doesn’t recognize her husband of eighteen years or her own home. Others still, she believes that strangers and loved ones are stealing everything she’s worked hard for over the years.

I wish I could take the fear and anxiety away. I wish I could convince her that the delusions aren’t real. I wish I could offer a solution, that I could make the pain disappear. Instead, all I can offer is an ear, a hug, a kind word—when I can bring myself to be there at all. I feel powerless. And I feel fearful.

She's all I have left of my immediate family and I fear the day I’ll lose her—the day I’ll no longer be able to connect with her in a meaningful way and realize I won't be able to really say goodbye. 

Closer Still

Selfishly, every time I think of my mother, I’m also worried that her reality might eventually become mine. The fear, guilt, anxiety, helplessness and anger could eat me alive if I let them. 

The condition—if it is my fate to experience it some day—regularly drops by to remind me of my potential vulnerability to it. It comes to pour poison in my ear. It softly whispers “there’s no point in planning too far ahead”, “are you forgetting little things already?”, "is that more than just a bit of brain fog?", “don’t bother learning, you won’t know it for long”, "what's the point of taking care of yourself, you're screwed", “those you love will leave you, you know”, “you’ll become an embarrassment, a nuisance”.

Thankfully, I usually manage to fend it off sooner than later. Still, it’s impossible to say that it doesn’t have an effect on me. Some days, it fuels me to be my best, most purposeful self. Other days, it feels as though it could render me listless, though it yet to be successful.

I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived. I did not wish to live what was not life, living is so dear; nor did I wish to practise resignation, unless it was quite necessary. I wanted to live deep and suck out all the marrow of life…
— Henry David Thoreau, Walden

The pace of that trickle of sand in my hour glass does feel like it’s quickened. It’s not only because I think about the possibility of dying an early death, as I started to when I lost my father. That seems a more desirable option by comparison. Now it’s because I fear losing my self. It’s created an immediacy that’s gone beyond merely not putting things off "because you never know". It’s created the desire to experience life not only by doing many interesting things, but by doing them with a depth and awareness I didn’t know was possible. It makes me wonder how much further there might be to go in "sucking the marrow out of life" at our most vital, when we can really take it all in and appreciate what it is to be alive. I may not find out but I doubt I’ll regret the effort.


*I’ve since learned that, as often is the case these days, the movie is based on a book written by Lisa Genova. One step at a time. I may read it, I may not.

November is Alzheimer's Awareness Month. For more information on Alzheimer's, and dementia in general, you may like The End of Memory by Jay Ingram. You may also appreciate the Stuff You Should Know podcast episode on dementia, which was released on November 4, 2015.


Image credit/copyright: Tuomas_Lehtinen/freedigitalphotos.net

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