One of my favorite movies of all times was Awakenings. It was my favorite for several reasons. It was based on a semi-autobiographical novel written by Oliver Sacks, a neurologist and brilliant writer. I knew his work well as I spent 38 years in neurology. I also loved the movie because it featured Robin Williams as the co-protagonist, one of my favorite actors, a favorite due to his versatile and deep talents. Robert De Niro also did an excellent job, although his roles tend to be more monochromic than Williams.
The story itself was inspiring and intriguing. It was about a group of people who had suffered neurologic catatonia for decades. The condition being caused by a brain infection called encephalitis lethargica (aka sleeping sickness). In this condition, you lose the ability to move . . . at all. You are statue like, but with a sound mind. This type of “locked-in” scenario has to be one of the most nightmarish things a human can experience.
But then the Robin Williams’ character, a brilliant and imaginative neurologist, Malcolm Sayer, starts to experiment with ways to help these, previously considered helpless, patients. He stumbles onto L-Dopa, a precursor to dopamine, a powerful neurotransmitter. It worked! These people who had been like statues for decades began emerging from their granite sarcophagi and becoming normal again. It was challenging for them to re-enter society after spending thirty years warehoused in a nursing home, no more animated than a piece of furniture. However, after a brief window of weeks of normalcy, L-Dopa started to lose its effectiveness. Raising the dose helped at first, but then the side effects became unbearable. Eventually, each of the individuals had to be taken off of the L-Dopa and drifted back to being encased in stone . . . somewhat like Han Solo in Carbonite, never to arise again.
I feel this kinship with these patients, of returning to a bit of normalcy after a period of hell on earth. And like them, at least toward the end of their freedom, realize that one day the window will close yet again. There’s a time bomb within my marrow. But it could not be for weeks, months, years, even decades. You can’t live within the shadow of that fear, because what if it were decades before I become seriously ill again? What a waste it would be to fret about that now. It is the realization that living in the movement is our only choice because living in the future, the “what might be” is too horrible to live with now. But, that is true for everyone, isn’t it? That is everyone who worries about the future, at least sometimes?
During their wonderful reprieve from catatonia, Leonard Love, the De Niro character, loved to dance. He took the other patients out to dances where they had a wonderful time, dancing the hours away into the small hours of the morning, within the utopian window of recovery. They were emotionally naked, without pretentiousness, didn’t know it was only a window at that juncture . . . thinking it was a door.
From Jan 2019 until about Nov 2020, my life was a living hell, so awful that I don’t even want to mention it now.
As I said before, now, I feel like dancing. The sky has never been bluer, the trees greener, Greta’s fur softer, fresh rainbow trout tastier, a down sleeping bag warmer, a long lost face of a friend more consoling, Denise’s love more faithful, air more rich with oxygen, the smell of black earth more rich, more organic, the blue mountains dipped in lacy icing more grandeur, and the soft yellow sun more comforting than it is now. Euphoria. Few blessed people ever enter hell . . . and leave again. Dancing in this window of time, the respite, the oasis from suffering. But there’s a dilemma.
During the worse of my experience, I reached out to an online Multiple Myeloma support group. In many ways, it was a breath of fresh air. There were some people who started just like me, just as grave, and now they were alive and doing okay years later. But it was the other people in the group that forced me to leave. No, not bad people. Good people. Well-meaning. Honest. There were two types of these people that I could not handle.
The first were those who were doing remarkably well, whose MM was diagnosed by a routine blood test and had never suffered symptoms. No broken bones, no renal failure. They were climbing mountains, traveling the world, starting businesses, preparing to run marathons. Shut the fuck up! I don’t want to hear about your damn wonderful life! Stop with your photos breaking the tape at the iron man finish line! Do you not understand I can’t walk to the car without assistance! A month previous, I was preparing to trek across Greenland. That’s the trouble with all social media isn’t it. People can show you a side of themselves that’s built in magical thinking. I know, selfish . . . profoundly selfish on my part to not want to share in the sunlight of their moment of glory.
Then there were the others, those who suffering was clearly WORSE than mine. Fractures in their cervical spines, quadriplegics, in severe unrelenting pain, locked up in an ICU bed or nursing home at age 55. I remember one woman describing her husband, who had been her hero, the bravest man she had ever known, screaming at the tops of his lungs, bawling day and night because the ugly cancer had invaded his brain. She was praying for his death . . . and that he could find a window once more. That could be me?
I pulled the plug on the support group.
So, while I’m not running marathons . . . yet, I am getting quite close to normal. If it were not for the 10 weeks of diarrhea and side effects from the steroids, which I’m taking to treat the diarrhea, and the diarrhea a side effect itself from chemo, I would be normal. Hmm, maybe it’s the steroids that adding to my euphoria? But regardless, I feel fantastic in body and soul. But here’s the problem. While I’m now in the glorious window of the normal, basting in glory of my own sunlight, for others I know, that window is closing. They are suffering. I feel this guilt. “Who the hell am I to relish in that warm yellow sun when others cannot?” Why don’t I shut the fuck up? Even others who come to this blog are suffering more than me right now, some, much more. I can’t feel their pain, truly, but well enough.
I feel things deeply. Always have. It is a gift and as Monk the homicide detective with OCD would say . . . “and a curse.” I don’t want to lose it. If I have any hope of becoming a decent writer at this age, it is because I feel profoundly and with great empathy for the experience of others. They say that if you as a writer don’t cry when you write, your readers never will. Compassion made me a good pain PA. It gives me some redeeming character as a person . . . a little. Yet, how to I merge this window of feeling so good, personally right now, with the brokenness I feel for the suffering in the world . . . and do it without guilt? I pray for them. I wish I could throw them a rope and pull them into my window . . . and we could dance together, emotionally naked, and hoping for a door.