Sometimes I forget that this is my personal blog and that I am free to express my thoughts and opinions. For a girl who is an habitual over-sharer and perpetual optimist, I really struggle to stay objective and talk about the dark truth. I find myself ruminating quietly about the challenges of Alzheimer’s disease- political policy, research, education- and the millions of people affected by the disease. It feels heavy and hopeless. But I don’t “go there” with you. I want to be a champion and a light source, the trainer in your corner. Nobody likes a Debbie Downer.
But when these thoughts percolate long enough, I feel like I could bust under the emotional strain of towing the proverbial p-c line. In my profession, I tend to tread lightly around the complexities of dementia and try to keep my personal opinions out of the mix. Because after all, there is no one to shake our fists at. We must deal with the cards we’ve been handed… make the best of the situation… find the bright side in the ugliest of circumstances… focus on the here and now… right?
I suspect that such a tender approach may not serve the best interests of my clients, or my future clients for that matter.
Alzheimer’s is an emotionally charged journey. Fear, frustration and hopelessness can be the biggest obstacles to overcome. But me? I am a bottomless source of encouragement, easily inspired by Alzheimer’s warriors and eager to share the tiniest ray of hope. Or at least I used to be.
In all honesty, I spend my days applying Band-Aids to a gushing hemorrhage. Like you , I am either sitting on my hands or folding them neatly in my lap, patiently waiting for a breakthrough cure. Perhaps I shouldn’t be tiptoeing on eggshells, afraid to misspeak or cause undo angst for someone traveling down the Alzheimer’s path. Because, after all, we are all just doing the best we can. Hmm, I wonder…
Perhaps a little brutal honesty and outright anger might not be a bad thing, especially if it rattles the status quo. And maybe if we all shake our fists and beat our drums, the universe will finally bend its ear. At the very least, it can’t hurt a damn thing.
This is as good a platform as any to generate dialogue- and emotionally fueled, heartsick, and judgment-free expression is welcome here.
So should I begin my truth-telling admissions with my thoughts on the advocacy process? Or the ego-stroking required to get a researcher to listen? Or how sick I feel that some of my readers are early-stage Alzheimer’s victims learning of their destiny at my despairing words?
To be clear, I like sunshine and puppies and rainbows and happy endings… and I would prefer to illuminate the silver-lining highs over the knuckle-scraping lows. But I think it’s time for me to get real.
I do believe The Dementia Queen is having a mild existential crisis.
Alzheimer’s is winning, and I am really not the queen of anything.
Keeping it real,
PS- Feel free to “keep it real” here. I get it.