Updated: Apr 25, 2021
It's the time of coronavirus, and we're deep in the thick of it. In Hoboken, NJ, where I live, it's even deeper as we're 53,000 people packed into a square mile. That means one is never EVER alone when one goes out, and so we all stay in, fearing that the sheer density of this tiny but enormous city on the Hudson has Covid swirling through the molecules at every street corner.
In my own case, I fall into two dangerous categories. Technically, I'm a senior now, although I can't really bring myself to state my age, which is odd, as age has always been a non-issue for me. Yet there's something about being this age that has that irrelevant ring to it, like, "Oh, she's 61 now. She's starting to crumble, and funny how we all look right through her. Is she even there?" (Note that I can say my age only when a fictitious character says it.)
Oh, I'm here alright, and I feel every minute of it due to my second dangerous category, which is that I have a severe blood clotting disorder that can turn the most insignificant health issue into a three-week stay in the hospital. And it causes pain. Sometimes severe, relentless pain. I'm pretty sure that contracting Covid would ensure my untimely demise, but is it so untimely when one passes 60, really? Wouldn't the world say that I'd lived a full life, that at least I didn't die young, that I'd had enough time here on this earth?
Well, the answer is no, you fuckers. No matter what age anyone is, death is never timely, because I can assure you, when the end is near, everyone wants more, and that's coming from someone who has had a shitty disease nearly all of her adult life. In fact, that may be the very reason I WANT more time...because I've been robbed of so much of it.
This whole stay-at-home thing has brought on two very strange twists in my life, the first a glorious period of relentless creativity, and the second, an exacerbation of pain that has me spooked. I ordinarily live with daily facial pain that is the result of a long-ago jawbone infection (brought on by the blood disorder), but last year a new pain joined the team after I took interferon for a few months to control my counts that were skyrocketing. (The drug I'd been taking for twenty years had finally stopped working).
The interferon put me into a type of half-remission, meaning I haven't had to take it in seven months, but it has left me with the most bizarre pain attacks that can strike my entire body two or three times a day. They can get so bad that I can literally scream and moan until enough Advil is taken to bring it down. (Even morphine doesn't touch it.) While a year of ibuprofen has taken a toll on my stomach, it can at least take the pain away completely until the next attack hits.
As usual, no specialist can tell me what's going on, tests have revealed nothing, and no magic potion they've prescribed works as well as plain old Advil, and lots of it.
But then this week started and the pain seems to be there all the time now in a low-grade way, with either a persistent headache or a mild throb in my lower back after the screeching pains subside. I've occasionally been struck with the horrifying thought, "Christ, what if this were to set in in a more permanent way?" It's not like it hasn't happened before. Seriously, what would I ever do? I'm going to hope it's a freak, passing thing and just get on with all these new songs I'm writing and recording. I'm also making lyrics music videos for my older songs that I'm putting up on YouTube until the new tunes are ready. And of course, I'm painting. And making tutorials in the hopes of building an online business. I've been busy.
But I'll be honest. I'm frightened.
Thanks to this odd period in our history, I've taken to sleeping when I feel like it, eschewing the clock almost completely when a creative endeavor is going particularly well. That means I'm sleeping in four-hour shifts here and there, and just awakened from one earlier. I'd been attempting to watch TV all evening but kept drifting off during two very good movies, the second of which was "Stranger Than Fiction."
I kept going in and out of it, until the very end, when author Karen Eiffel (Emma Thopson) decides to keep her book's protagonist, Harold Crick (Will Ferrell), alive instead of killing him off to great fanfare. In doing this, though, there's serious potential that changing the story's ending will destroy the masterpiece of her career. But when she realizes that a real-life person is intersecting with her writing, she knows she just can't do destroy this character, and so rewrites the entire book. At its end, she says this:
"Sometimes, when we lose ourselves in fear and despair, in routine and constancy... in hopelessness and tragedy, we can thank God for Bavarian sugar cookies. And fortunately when there aren't any cookies, we can still find reassurance in a familiar hand on our skin... or a kind and loving gesture... or a subtle encouragement... or a loving embrace or an offer of comfort. Not to mention hospital gurneys and nose plugs... and uneaten Danish... and soft-spoken secrets... and Fender Stratocasters... and maybe the occasional piece of fiction. And we must remember that all these things, the nuances, the anomalies, the subtleties, which we assume only accessorize our days, are, in fact, here for a much larger and nobler cause: They are here to save our lives. I know the idea seems strange. But I also know that it just so happens to be true."
It was a stunning and beautiful piece of narrated prose, the kind that can pop up in works like "My Brilliant Friend" or "The Shawshank Redemption," when ordinary viewing is interrupted by prose that reads like poetry, and we are elevated.
But was I elevated by this piece of writing that I knew to be so gorgeous, or was I heartbroken that so much illness and pain has often gotten in the way of the accessories of which she speaks? So often in this life, I have been relegated to the realm of the inconsolable, where no words or touches of any kind can reach me. I pray to God that this new and thrilling period of creativity will not once again be felled by the Mighty Awful that can have a way of sweeping down upon me with the blunt instrument of complete and cataclysmic destruction. I do not think I could bear that to happen even just one more time.
When the film was over, I watched the credits to see who wrote it, and the name was Zach Helm. As I thought about his moniker, I imagined that he would be an extraordinarily young and handsome man with dark hair, and holy hell, when I looked him up, that's exactly what he looked like. He's 45 now, but as "Stranger Than Fiction" was written almost twenty years ago, that would have made him 25 during its creation, making this already incredible story all the more extraordinary in having been written by someone so young.
I read his IMDB credits, which were what one would expect from one so talented, but I have to admit, I felt envy--not at all that he has achieved but at his robust health that is largely responsible for this incredible body of work. How different would my life have been had I not been so ill and had I not had the father I did, whose cruelty almost assured that my body would break at some point. A person cannot withstand a parent like that as a child and expect to live a normal life in adulthood. Despite my valiant efforts to make repairs of every kind, some losses are permanent as it's been awhile since I remember feeling the accessories of which Helm speaks.
Part of that is my own fault, of course, as I learned early to keep things on the down-low, which means two things: one, that caring loved ones often don't know just how much trouble I'm often really in, and two, it all comes out in the work, sometimes in a fury of expression that is as much a birth as any living child. In the end, truth can never really be held back, for if it is, you die for sure.
And so, in these dangerous times, both societal and personal, I'm in a rush now to get it all down before some Karen Eiffel out there decides to write me off the page. I started feeling that even before Covid hit, that's there's a growing urgency now and I cannot take my days for granted, not that I ever have, but well, I'm older now and the blood illness is worse. Anything can happen at any moment, but oh what I wouldn't give to be Harold Crick who is given a reprieve, and who at long last finds love.
I'm not going to fool myself that there will be time left for love, but maybe there's time to get it all down. Or as much of it as I can, anyway. Not only do I feel urgency, but also that looming sense of danger, which has been there as far back as I can remember. At our core, we're all a mix of genetics and of the events that have shaped us, which has been true for Helm, as well. When I reflect on his prose, where he says that the gentle gestures of life are "here for a much larger and nobler cause," that being "to save our lives," I smile that he lived a life that could have yielded such beliefs as certainties.
At my age, which I still can't say except in third person, truth is a bit more fluid and a whole lot sadder than that. And yet I'm also aware that right now, at this very moment, despite everything, I'm living some of the happiest months of my life. Creativity, despite its dogged challenges when filtered through the mind of a perfectionist, can be tough. But it also gives my life meaning, and in the end, meaning is really everything, even though I'm aware I've been gypped of so much.
If anyone's life has been stranger than fiction, anyone who knows me will tell you that it has indeed been mine, with peril and trauma of all kinds being the consistent theme. Yet there's been no great narrative to my story, no sweeping arc, and I doubt I'll get the Hollywood ending that Harold Crick does. But I still do hope, always, just as a state of being, but in this case, I hope to have an unexpected and unusually happy exit when that untimely day arrives. I just pray the Advil keeps working until then.
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