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Can You Say That Again?

It’s been awhile since my last blog entry. I could perhaps claim laziness, or I’ve been overly busy with my songwriting (which has returned after a 15-year hiatus), or I’ve been binging too much TV, and they would all be true to a certain degree. But the real reason I’ve been gone is that when it comes to essays these days, I’m speechless. And that’s because I’ve been told by my doctors that I am going to die.

Yes, dear readers. After decades of medical torment due to an insanely rare blood clotting illness that has caused constant pain, long hospitalizations and all kinds of bizarre twists and turns, it seems the final chapter has finally begun, and I honestly have no idea how to play this hand.

When medical chaos has struck before, my inner warrior princess would wield her fiery blade, and I would somehow come out of things alive, if a little worse for wear. But this new diagnosis? It’s myelofibrosis, which is an extremely rare cancer of the bone marrow, whereby the marrow slowly scars and hardens until finally the day comes that it’s no longer able to make any more blood. The cancer is actually an outgrowth of my previous blood illness, essential thrombocytosis, where for decades my marrow spit out way too many platelets every single day, and now it’s just worn out, beginning to slowly stumble on the battlefield, no longer able to raise its weapon and suppress the insurgent blood counts and their eroding effects on this innocent villager’s peace of mind.

To a large degree, I suppose that could be a metaphor for my life, as anyone who knows me knows the hellish medical and mental illness I’ve suffered with since my childhood. While it’s true that life is fairly brutal for us all and we all suffer, it’s also true that some of us suffer more, and I’ve often been left scratching my head why my life has played out in this particular way. What could any creator have had in mind to make a gifted human being only to thwart her every effort to share those gifts with the world?

Naturally, anyone who has suffered senselessly asks questions like these, and there are never ever any answers. We all want to believe there is some inherent meaning to it all, but the bottom line is that it’s just suffering and it sucks. If we feel well or stable enough to give our suffering meaning, then that’s an added gift. But there’s just no way to know how a death sentence will play out, especially given my history, for it seems that every time I felt that my spirit was overcoming and thus exploding and expanding in joyous and creative ways, without fail some kind of mental or medical catastrophe would come along and stop everything in its tracks, often landing me in the hospital. And that’s exactly what happened this time, as well.

After fifteen years of radio silence in my songwriting, sometime towards the declining days of the Covid lockdown, the music lit up in me again in ways it never had before, and I was ecstatic, believing that I was one of those musicians who might surface late in life and finally have her moment in the sun just before it would set...sort of a breathtaking win across the finish line at the last possible second.

But with these ecstatic days also came the intense dread, wondering what the medical nightmare would be this time, never thinking it would be the words, “You have three years to live.” I would even talk to my therapist, Howard, about it all during the year before this diagnosis, saying that everything felt just so big this time—the joyousness was just so intense and constant—that God forbid the dark force that has always been trailing me wielded its hand once again...well, I knew the event would be enormous and more dangerous than it had ever been.

Naturally, Howard would try to tie this fear back to my childhood, when my dreams and confidence were consistently shattered, and I would go along for the therapeutic ride hoping he was right, but deep down I knew better. While I don’t believe in demons or the devil, I have to admit that something terribly strange has always been present in my world to intercept and tackle me just when it seemed like I was about to make the touchdown.

So when this new diagnosis came along, and I showed up one day at Howard’s at my usual Friday morning appointment with the awful news, he said that even he had to admit that there was a strange phenomenon operating in my life that just couldn’t be explained, and since then, we’ve been simply trying to plot and navigate this new and final path as it unfolds.

On a practical level, I’m now a patient at Cornell in New York City, as it’s the only research facility in the country, at lease that I know of, that is attempting to slow the progression of the illness using a combination of Jak inhibitors and interferon. In another essay, I’ll explain all this plus myelofibrosis itself in more detail, but for now, these are the words from my soul, not my head.

As I find myself on the ground again after yet another spectacular takedown,I wearily get to my feet and remind myself that this music isn’t going to arrange and record itself. I’ve spent about 18 months learning to record and mix these new songs in my home studio, so I have the means now to get it all down on my own timetable and at far less cost than what I would have spent years ago.

The trick, of course, will be to stay motivated as I feel the illness slowly get worse and create more intense symptoms of pain and fatigue. Sometimes, it’s all too exhausting to even turn on the computer, but conversely, if I can manage it, it can often infuse me with such energy and focus that I go to bed feeling much healthier than when I woke up.

I’m aware that all this, of course, is part of the battle we all struggle with, which is wanting to feel that somehow our lives upon this earth mattered, that we mattered, and with any luck we’ll leave a legacy that will be remembered, if only for a little while. Most people probably feel this legacy through their children, who will take their parents with them into the future not only through memory, but through genetics.

But as many artists and songwriters know, it’s the work that is our children if we do not have families of our own, so if we know we’ll die before the work finds its way to the world, there’s such a deep ache of loss and grief. In a songwriter’s case, the unknown songs are the children who never matured, who were known only to us for a short time, and we feel such sorrow at the squandered potential of a life not fully lived...which ends up being yet another metaphor that fits my world so well.

In my battles to win dominion over my brain and body, so much time and energy was lost, but had I not fought, I would have been dead long ago. And that makes this final chapter all the more poignant, because I fought so very hard to have it. Naturally, I knew that once I passed 60, I was in the last third or so of my life, and I was so excited by the adventures to come, wondering where these new songs would take me, as I’ve also known that they are all infused with something that was not there before in previous works.

They’ve also been coming to me much faster this time around (this was even before the diagnosis), which has altered my process in new and fun ways. In short, yet another new day had been born, only to be shot down yet again by this brutal force that’s intent on stalking me until the bitter end.

While I’m often tired and sad, I’m also pissed as hell, so the battle is on as to who will win this last round. Yes, I know we all die in the end, but in my case, I have advanced notice of my demise, so essentially I have a deadline, which is curiously an all-too-perfect word for this situation.

If I can perhaps focus less on the battle and more on my connection to the cosmos, it all might end up being an easier and more meaningful ride. Neil DeGrasse Tyson recently said in an interview that humanity is essentially “stardust that achieved consciousness,” as the atoms in our bodies are the same atoms that were released at the Big Bang...something like that. I was so moved by the very thought, that if my songs don’t endure (and let’s face it, no one’s songs endure forever), maybe my atoms will and become something entirely new that didn’t exist before, just like a song. That’s the mystery of creation really, how things consistently form and reform into something new, yet stay part of the continuum that never stops.

Still, though, I’m profoundly sad and feel so deeply alone. No one can come with me on this trek, despite genuine sympathy from loved ones. As I said earlier, it’s a hand I simply don’t know how to play yet, even though it’s fair to say this has become my new normal. I’ve no regrets whatsoever about the choices I’ve made in my life, but I’m so very heartbroken that this is where I’ve landed. I hope the next card I’m dealt will change my fortunes, if ever so slightly, with hope being the operative word. It’s in short supply right now, and I need it desperately.

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