Living "Flowers for Algernon": What would *you* do?

This morning, I was exercising my secret sin… browsing political blogs. (Shameful, I know… please don’t spread it around.) An enigmatic, just-posted entry on DailyKos caught my eye: ” A short diary, but a question on life.”

The author (with an intriguing nick of BFSkinner) asked rather eloquently what we would do if diagnosed with a disease that would inevitably rob us of our minds? A disease that would steal our very self, a disease that can be treated to slow but not stop the progression, a disease which, in the end, will win. How would we approach living the tale of Flowers for Algernon - the story of a mouse and a man who, having had their intelligence artificially enhanced, then watch that intelligence fade, along with their life?

Predictably, the question stirred me. I mean, heck… that book probably helped shape my fascination with improving and maintaining the human brain. Instead of contributing a quick comment and moving on, I decided to write here, instead.

Because there’s just no way I can explore this briefly.

Here’s what I hope I would do:

Reminders.
And Buying Time
(as an investment)

I‘d post reminders everywhere that buying time with treatment is important. That it’s not just buying time for me, but for family, for friends, for anyone whose life I might touch in that time. That it’s buying time for neuroscience to make some more of it’s frantic leaps forward, for medicine to find ever more ways of extending that time, and, potentially, finding other treatments and cures.

I would post reminders of those exceptional people who have only been diagnosed with diseases like advanced Alzheimer’s after their deaths — and yet who showed no symptoms while alive. Reminders of artists whose creativity was freed as their dementia progressed. Reminders that neuroscience still knows too little about many of these diseases to accurately predict much of anything about them.

And I’d try to make sure Those-Who-Cared had frequent reminders of these things, too. Maybe through a scrapbook of collected information. Maybe through a book-book. Maybe through a series of time-delayed emails, or post cards. I don’t know.

But I’d buy time to figure that out.

And I’d Write.
And Think.
And Paint.
And Document.

Because that’s what I do. It’s a big part of what makes me, me. And it’s something that I could keep doing even as other parts of “me” fell away.

Partially because I’d like to imagine that my documentation, my thoughts, my transparency would somehow contribute to a deeper understanding and even appreciation of the condition - for medical specialists, for other patients, for loved ones of other patients.

And partially because I’d hope that a certain poignant beauty could be seen in the results. If my suffering and loss could somehow impact the world, that thought is a comfort.

I’d Prepare.

Prepare for the worst. Plan for future care, for funerals, make arrangements for living wills. Prepare friends and family emotionally, financially, prepare my home so I could stay in it as long as possible, prepare mementos and bits of history that might serve as bridges back home, even on days when my brain might falter.

I’d Indulge.

Maybe that would mean taking the world by the horns, and doing all of those “someday” things that frighten or intimidate me. Maybe it would mean luxuriating, being a harbor seal, or just curling up in my own mind and treasuring the time spent with myself.

It would almost certainly involve strawberries, shortbread, and chocolate.

I’d Apply…

Everything I’ve learned about brain health, neuroplasticity, cognitive reserves, and building up the brain so that it was in the best shape I could get it in. That means exercise, both mental and physical. It means reducing stress. It means eating well, and mindfully. It means sleeping, companionship, hydration, and staying engaged.

And I’d experiment - I’d work to strengthen those parts of my mind I most treasure… not just memory and spatial ability, but personality, compassion, empathy. I’d struggle to learn more about the parts of the brain, and explore how the parts I most value might be best exercised and built up. I’d probably adopt a discipline of Buddhist meditation towards that end, as well as what follows…

Even considering…

My (admittedly layman’s) grasp of modern neuroscience, how the thoughts shape the brain, the brain shapes the thought, and the intricately intertwined nature of self and synapse, I’m not convinced that dementia, Alzheimer’s, or strokes erase the self.

I think about Josephine, and my great-grandmother (both gems who I discussed Living with Alzheimer’s, A Spark Of Self and Humanity, on Brain Fitness for Seniors) and I think that it’s the interface between self and the world that is damaged… not the self itself.

The photo’s of Josephine’s art installations touched me so deeply that looking back over them today, I’m more inclined than ever to believe that the self is more than just wiring connections, programming, bits and bytes. She’s passed on now, and her loving daughter Annie is grieving - but the photos still speak of Josephine’s reality, even as her disease progressed and robbed her of so much else.

You can view many of them here, on Annie’s blog, under the category Art of Alzheimer’s. Be gentle if you visit, please.

So All The While…

I‘d be unable to help but ponder the concept of self, and the loss of it, and who I am and will be. I’d probably approach it as the contemplation on dismembering identity that I’m so fond of. And I’d consider the importance of expression of self, and how much that does, or doesn’t matter.

And I’m sure I’d be philosophical, recognizing that, if things progress as expected, I would eventually have the answer to ” Am I my brain, or something more?” … even if in the end I might not understand that answer.

Somehow, I find that very humorous.
I’m a sick puppy.

But Sick or Not..

I hope that like Algernon’s friend Charlie, I can leave flowers for those who go before me. Maybe in the form of words. Maybe in images. Maybe just in thoughts.

But I hope, and believe, they will bloom.

What would *YOU* do?