Lessons from Living, Dying and Living Again

Chapter 9 (preceding chapters are posted below)

Safe at Home

         That trip home from Mount Sinai, with John doing the driving, moving cautiously out of the city, as if I were a lopsided crate of eggs riding shotgun, took place exactly 18 months ago as I write these words. It was getting to be late fall in Connecticut, and I’d missed the annual burst of color (I’d missed summer, too, for that matter), but the other New England signatures – the rolling hills, stone walls, brisk mornings, the rich, intensely nostalgic smell of fallen oak leaves – were all once again a wonder to me. However, just because I was home again didn’t mean everything was the same as it had been. For the time being, my role would be different. I couldn’t yet do many of the things I had long been used to doing. I wasn’t yet driving, for example. Or taking out the garbage, or changing sheets on a bed, or vacuuming, or hanging a picture, or doing any number of other things that earlier had been routine, and, I hoped, soon would be again. But beyond the chores, I had changed, too. Before I’d left for my spell at Mount Sinai, I hadn’t needed a caretaker. Now I sort of did. Now I was wrapped up in myself, monitoring my every tremble and twitch. I was on daily doses of Acyclovir, Eliquis, Atovaquone, Cresemba, Losartan, Metoprolol, Pravastatin, Folic Acid and Cholecalciferol, and whatever cyclone of side effects they brought with them. At least at Hope Lodge, Marcia could come in for a week and then be relieved by someone else. Here, she was on duty every day and night, and it took some getting used to for her. Or maybe there was no getting used to it. She was there when I fell down the stairs, when I unexpectedly needed a ride to St. Mary’s for a blood transfusion, and when my shaking right hand needed help sticking a Zarxio needle into my abdomen. I not only had to be grateful, which I certainly was, I had to get out of my own head long enough to tell her I was grateful and that I understood and appreciated all she was doing. And she wasn’t the type to be shy about reminding me. Our moving forward could be awkward but it was never in doubt.

         There remained the question of food and appetite as well. Coming home had not restored my desire for food. Even a traditional Thanksgiving spread, normally my favorite meal of the year, couldn’t revive my old hunger. The need to put some weight back on was getting urgent. Finally, at one of my December appointments in Manhattan with Dr. Keyzner we discussed my frustrating inability to find something I wanted to eat. She put me on a steroid called Budesonide, often prescribed for Crohn’s disease, and the effect on my appetite was immediate. It seemed to me like a miracle that I suddenly desired food of all kinds. I went on a regimen of milk shakes, whole milk, big breakfasts, bread with meals and Italian cookies, and at last my weight began to come back. Even after I was gradually weaned off Budesonide weeks later, my hunger remained and my long dormant taste for chocolate and coffee and even beer returned.

Thus, my very slow recovery continued, mostly under the watchful eye of Alla Keyzner as well as Dr. Kert Sabbath and his wonderful nurses at Leever. I only fell down the stairs twice, up the stairs once, my hair grew back and it was far softer and even less gray than it had been before, I began sneezing like Matt does (two short bursts), my hiccups subsided, my fingernails regained their normal look, my platelet count got up to the 90s, I got back behind the wheel of my car, I put my cane in storage, and my 3-hour naps got back down to a more sensible length. In short, after all these months and years, I seemed to be making it through.  

“Now you’re ready for your second act,” someone said to me, and it made me think about that whole dubious trope. The “second act” has been a much-discussed concept for a long time, probably ever since F. Scott Fitzgerald scribbled in his notes for The Last Tycoon that “there are no second acts in American lives.” There appears to be some confusion about what Fitzgerald meant or what he was referring to. Was he saying that people usually don’t get a second chance at the spotlight and that creative resurrection is a myth? Or did he mean our in-a-hurry pace in America wants to take us from the theatrical first act (problem presented) to the third act (problem solved) without a contemplative, piecing-it-together act in between? It’s hard to imagine Fitzgerald intended the first interpretation since there have been and always will be thousands of examples of second, third and even fourth acts to the contrary (although Fitzgerald himself struggled mightily after his first flush of fame and died, broken, at 44).

In any case, my own second act, I gradually came to realize, wasn’t going to be something I was about to do or ever would do. Instead, it’s the story of what others had done for me. Through the long, long process of my illness and treatment, from the nightmarish lows to the ultimate triumphs, not a lot of the credit for the way it turned out could go to me. I was merely the guy on the slab, trying to stay alive. Instead, the real story was to be found in the enduring, continually called-upon love of my family; the extraordinary, sometimes surprising, warmth of friendships; the generosity of unknown blood and platelet donors; the brilliant, attentive doctors and medical staffs; and the extraordinary advances in science and scientific research that put all the rest into motion.

I think this is where I’m supposed to impart wisdom, but that’s something that doesn’t flow easily from me. The best piece of lasting advice I ever remember getting was at my 10^th birthday party at a downtown Waterbury bowling alley. I was bowling well, too well I guess, when my father took me to the side and said to me, “You don’t win the prizes at your own party.” That one has stayed with me over the decades and has been useful in any number of circumstances – and I happily pass it along to you.

But sometimes the lessons you need come with perfect timing from unexpected sources. While wandering around in YouTube not long ago, I stumbled upon a version of Our Town recorded in 1989 at Lincoln Center, and something made me stop to watch it. Have you seen Our Town? You really should – or maybe see it again. It gets staged a lot, probably because it’s so spare and easy to produce, and many high school drama teachers tend to think of it as sentimental and sweet. But it’s not. It’s as hard as New Hampshire granite, and this one, with its flinty Stage Manager played by Spalding Gray and a luminous Penelope Ann Miller as Emily Webb, had me spellbound from the very beginning. I won’t recap it, but I will say it’s about living, loving, dying and simply being in a small New England town at around the turn of the 20^th century. In a kind of miraculous way, it’s about nothing and also about everything. Someone in it gets to view life from beyond the grave, whereas I merely got a brief look from that general direction, but it covers much of what I would want to say at this point.

That life is fleeting and unpredictable and sometimes ends abruptly. We like to act as if this isn’t the case, but it is. We often take it for granted when that’s the last thing we should do.

That too many people go blindly from day to day, wrapped up in petty issues and dislikes, never noticing what is right in front of them – the small and simple beauties of our time here on earth.

That so many of us are too full of fear and anger and resentment and the thought that someone, somewhere, might be getting something they don’t deserve or that we’re not getting. If they could, the dead would call down to us: So what if they do?

And that a plain, simple day is a gift that we don’t value enough. This very day, this hour, this here-and-gone moment, this generous grant of life – well, it’s everything.

And right now, and forever, it’s all and everything for me.