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The Great Divide

As copy editor for a magazine/podcast combination, I sometimes get the chance to preview podcasts as a way to edit an article before we publish it, but more often than not, we publish articles as the author has written them, with little outside input. I was catching up on the latest podcast episode, one that I had been looking forward to hearing, having enjoyed the previously published article written by the guest speaker. I had to stop the story midway through, confused, thinking, “Wait a minute, is this the same person who wrote the article we published a few months ago?” I walked over to my copy of the mag, and reviewing the article again confirmed it was indeed the same person. But as I continued the podcast, I couldn’t help but marvel at how different the speaker seemed from what they had presented in the article.

Later that day, I began to wonder, do we really see ourselves clearly at all? How great is the divide between the stories we tell ourselves, how we present ourselves to others and how others perceive us? Those of us who use social media regularly cultivate a picture of who we are through the stories we share, and the memes we post. Some of us use our accounts to share carefully prepared essays, snippets of our lives, what we are thinking, how we feel about the world around us. But how much of what we share is true, and how much of that is pre-packaged for consumption, an effort to present a picture of the person we think people want us to be, or the person we feel we should be, rather than who we truly are?

Taking inventory of the qualities I think I have vs the qualities others have expressed they think I have bears some weight. Some items I resonate with, and others I just think, “Oh, if you only really knew me...” I was paid some very high compliments recently by a friend that I have come to respect very much, a woman who is caretaker for her husband with early onset dementia, as I was for mine. She said to me, “You are such a dynamic, caring and open person, so brave in your decisions, so willing to put yourself out there. I just enjoy being around your energy. You make me want to be more confident, and it encourages me to put myself out there, too!” She said it with such enthusiasm, and I was so taken aback, I don’t remember if I even thanked her at the time, but thinking about it later, I was really pleased to know that I am projecting positivity that is actually landing true, at least for some people.

In reality though, I am feeling pretty lost, broken and really damaged by the caretaking experience. Losing my husband to a dementia that took him away from me long before he died has shredded my soul, destroyed my confidence as a woman, wondering if the love we shared was ever real, or if it was just a manifested symptom of his FTD/ALS, his brain lying to him as it was slowly dying, anxiously going back in time to try and pinpoint the time where this disease actually began. I don’t FEEL dynamic, I don’t FEEL confident, I don’t FEEL brave. I feel very small, and alone and frightened in the knowledge that in the blink of an eye, everything we think we know can change. The life we think we are leading is an illusion that can shatter in an instant.

I realize this is only a small piece of the puzzle that is me. Growing up with me as their mother, my children have known me to be volatile, impatient, explosive. My friends view me as a fun-loving go-getter, generous with my time and knowledge. My coworkers know I can be confusing at times, less precise than their learning minds need me to be when we are troubleshooting issues or developing procedures. My aging brain and the trauma of the past few years means I don’t have the instant recall I once did, and the imposter syndrome kicks in mightily when I realize my younger co-workers are much sharper than I, have better memories and are more technically adept than I. Still, wanting to impart my greater experiences, I push them, encourage them and (probably over-share) knowledge with them, in an effort to prepare the way for them to become the stars I know they are. But do they see me as an inspiration? Or do they see me as the nagging mom-type, lecturing them about their obligations, repeating knowledge they already know, holding them accountable for their work? I may never know if I hit the mark with them, or if they will just file the memory of me away as just an unneeded distraction in their career.

When you or a loved one is faced with a terminal disease, it tends to strip away the noise, paring you down to the bare bones of who you are and what your life is about. The important things change – no longer are physical beauty, conventions, or perceived successes a priority. Time is encapsulated, our circles become so much smaller. Making sure our loved ones know how we feel about them is critical. Making changes that will smooth the way for people who come after us becomes our obsession. Pushing our kids to their successes and happiness is paramount. Being KNOWN is really all we have left in our limited time.

When you are left behind after the death of a spouse you take stock, take one step, and then another, walking towards a future you never would have imagined, leaving behind all those things that just don’t mean anything anymore. And, hopefully, begin to know yourself better, and show yourself better to the world around you. I would entreat you all to make sure your friends, and your kids, and your spouse really know you – the real you, the good, the bad and the ugly. Don’t only tell them all your stories, make them part of your collective story. For in the end, the stories people tell about us will be all that matters.

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31 août 2023

Elina, these lines speak for all of us living with ALS: “I feel very small, and alone and frightened in the knowledge that in the blink of an eye, everything we think we know can change. The life we think we are leading is an illusion that can shatter in an instant.”


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