Last Writes

Bill became a writer at 64.

It wasn’t poetry or long-form prose. Not short stories, which he loved to read, nor song lyrics, which he loved to sing. Not essays and certainly not blog posts. Bill wrote notes.

Most were practical. Several were reflective. Some were funny. A few were heart-breaking.

It wasn’t by choice. It was the only way he could make himself understood to people other than me. As it turned out, I think it also helped him understand. Or at least reckon with what was happening to him.

I have changed a lot. Mentally and physically. Bill note 2

Bill’s Porter Hospital nurses gave him a clipboard and legal pad on July 15, 2014, the day after 11 hours of surgery to rebuild his jaw using bone and tissue from his lower leg. It became his voice with the staff … and sometimes me … during four more hospitalizations over 30 of the next 90 days. That and a couple of small spiral-bound notebooks he had me buy.

Can I get up before Dr.stops by? I will not let him catch me in bed. Hopefully they will be able to give me a new dress (aka hospital gown).

Ever prideful, Bill insisted he was up, presentable and sitting in a chair when Dr. Campana made his early morning rounds. This was the request each of the 30 days he was in the hospital. Long before pre-cancerous spots and radiation and photodynamic therapy and cancer and surgeries and PET scans, Bill would say, “Even if you don’t feel good you can look good.” He always did.

At times, most times in fact, he worked hard to keep things light.

I was a bit anxious last night, but I didn’t try to escape. I’ll start drawing a floor plan!

I want designer scrubs with shoes.

Fun is the name of the game. 

I’ve been building a pillow fort at night.

I just had an oxy(contin) shower.

And again,

Good morning! Walk? Have to be up before Dr. 

At times, he was philosophical, including commentary on the declining newspaper business.

Now the newspaper looks like somebody who has been through chemo … thin, unsteady and knowing the inevitable could only be held off for so long.

Because he was on a mostly liquid diet, food became a focus, including watching America’s Test Kitchen marathons on the tiny, fuzzy hospital TV.

I think about Peru and chocolate for the kings.

Maybe we can go to the Boulderado for clam chowder to go.

Do you remember the Chunky Bar?

Chris Kimball (host of America’s Test Kitchen) called this pork tenderloin the French cut.

I will see if I can find the New Yorker restaurant review that had tiramisu with black cherries in a parfait glass.

Then there were moments of despair, which broke (and still break) my heart.

This is beating me. 

I won’t be coming home for a while. The pain gets no less. Let’s be realistic. Where does this end?

Jill … best thing that ever happened to me.

Nowhere I’d rather be. With you anywhere. We can do anything.

As we approached our trip to Hawaii, the notes became hopeful … excited, even. But then Bill developed thrush, a mouth infection that’s a common side effect of radiation, about a week out. Thankfully our hospice nurse, Anita, was able to beat it back in time for the trip. In addition to meds, though, treatment involved swabbing the mouth with vinegar every few hours.

1-15-15 (15 days before Bill died) …

If I stay ahead of pain, I’m OK. One problem is painful swallowing. This is hard to eat. Lidocaine is very short term. I need something to “coat” the swall(ow) area. When not in pain, my life is almost normal. I don’t’ even think about it.

Then a few days later …

Tried on swim trunks last nite. Tight as draw strings would go, took two steps and they fell off! Ordered smaller from Speedo. Be here Fri or Mon. Got 2 day ship for more $.

I hope this pain is a non-issue when we get there. Won’t even think about it! I won’t let it drag me down.

And during one sleepless pre-Hawaii night …

3:30 am:

Now that burned those tiny hairs around my hiney! “Vinigga!” Tell me I don’t need pain meds! Got to keep up. I feel almost normal sometimes, but I always have a feeling it’s looking over my shoulder.

4 am:

Much organizing: c-on (carry-on) or check baggage. Just did some Lidocaine to cool mouth. At this time I feel normal. I have a tendency to tinker, detail, fix, clean, after hours when I don’t have pain.

5:30 am:

The joke went past me when you and Laurie came in and you had my slippers in hand! “Now sit here by me feet, and put another log on the fire …” It’s cause you are so sweet.

5:30 am (again):

Swabbing with vinegar. Will xxxing thrush limit mucus build up in mouth and sinus?

7:15 am:

Coffee. I’m leaving in morn!

7:45 am:

I made a mistake when I said time doesn’t matter. Just the opposite. It’s all I have left, and it isn’t much.

A few weeks after Bill died, I found this note, buried in the legal pad, from October 20, 2014, just after Dr. Campana told us the cancer was unstoppable.

I think this is the beginning of the end, best friend. Things didn’t work out the way we wanted. I’m totally responsible for this.

I hurt to my core when I think about the guilt and responsibility Bill carried about his cancer. I always hated that he smoked, and I made no bones about it. I also knew that for some people like Bill, smoking is an insurmountable addiction. But none of us lives without internal struggles. We do the very best we can with what we’ve got.

If Bill can see and hear me now, I hope and pray that he sees and hears me thanking God, the universe, my lucky stars and anyone else responsible for bringing him into my life and giving us 27 years of trying to figure life and love out together.

If an all-knowing, all-powerful being had come to me a year or two into my relationship with Bill and said, “You can love this Armani plumber (see my earlier post, Big Things Come in Small Gestures, to understand that reference) mightily and be loved mightily back for 10 (or even 5 or 7 or 12 or …??) years and then it ends, or you can cut and run now,” I would’ve signed up for the bet. In fact, I did, and I got more than I ever could’ve imagined possible at the time. I can’t be sad or angry about that.

Bill was a badass, for sure. Brave and strong, and as he grew older, that strength allowed him to feel and show love and tenderness in ways that alluded him earlier in life. Even with all of that, one of the biggest lessons Bill taught me, sometimes begrudgingly (on my part), was that finding humor in even the toughest of situations made life more bearable if not outright, out-loud fun. He demonstrated that in spades throughout his life and even more impressively in his last seven months of surgeries, pain, struggle and the pure, deep sorrow of a terminal diagnosis. As evidence, here’s one of the last notes he wrote to me (with a wry smile and a twinkle in his eyes, I’m sure).

From Garrison Keillor … Lena, you’ve stuck by me when the crops failed, a tornado leveled the house and barn and now my cancer. I’m beginning to think you’re bad luck.

Bill note 1

 

 

 

 

 

 

One thought on “Last Writes

  1. Last night I posted my ‘finished’ first installment of my Meditations on Emerson’s ‘Nature’. I begin it with a ‘(Phor)word of Explanation’ and I begin the foreword with the following quote from Dostoyevsky’s Notes from the Underground: “Gentlemen, you must excuse me for being over-philosophical; it’s the result of forty years in the underground! Allow me to indulge my fancy.”

    The following paragraphs come a bit later in the foreword:

    Maybe, just maybe, I am now really ready, after forty years underground, to say a couple things about Notes and Nature and Nietzsche and other things, things which are not merely clever and not devoid of life. Neither to myself nor to you will I promise this. Emerson considered every day a judgement day. Well, then, I’m about to be judged.
    And how will I be judged? Here’s how: either I need to emerge from my underground and write about Emerson’s Nature, in which case a god will smile gladly upon me, or I’m doing this willfully, not really needing to do it, but just wanting to do it, maybe to seek flattery (from myself, from others) or to pretend I’m doing something meaningful, or just to have something to do with my time other than play solitaire. When the pompously pedantic Polonius asks Hamlet what he is reading, Hamlet responds: “Words, words, words.” Unless I am writing because I must, because I need to write, all I am doing is writing words, words, words.
    Jill posted something very special to our blog. It was about and very much from the love of her life, her deceased spouse Bill. He died of a cancer in his mouth. Treatments eventually resulted in his not being able to speak, which is something he did happily and well; truly a huge loss for him. Jill begins the post with: “Bill became a writer at 64. It wasn’t poetry or long-form prose. Not short stories, which he loved to read, nor song lyrics, which he loved to sing. Not essays and certainly not blog posts. Bill wrote notes. Most were practical. Several were reflective. Some were funny. A few were heart-breaking. It wasn’t by choice. It was the only way he could make himself understood to people other than me. As it turned out, I think it also helped him understand. Or at least reckon with what was happening to him.”
    It wasn’t by choice! He chose, of course, what to write, to whom, when, how. But he didn’t choose to write. And this not by choice made him a great writer. Go look at the blog, see (directly) for yourself.
    In Richard Wagner’s version of the mythological Germanic/Norse Nibelung saga, the hero Siegfried wants to kill the giant serpent (Wurm, worm; more on this to follow) named Fafner so that Siegfried can grab the golden ring being hoarded by Fafner. But only he who can wield the sword named Nothung is able to slay Fafner. Siegfried, it turns out, is the one. Nothung comes from the German word Not, need. Only he who truly needs to slay Fafner, can do so. It wasn’t by choice that Siegfried slew Fafner, but by necessity.
    So, like Bill, I’m becoming a writer, though I’m not quite (three months yet to go) sixty-four. If it turns out what I write finds real connection to life, I will then gratefully dedicate this to Bill, my exemplar.
    Everything hinges on whether I truly need to write this. Men and women, young and old, not so long ago, used to be so frightfully needy. Now many of us get our needs met so easily, so regularly that we hardly really need anything any longer. Entire systems (they tend to be ism’s such as capitalism or socialism, individualism or collectivism, conservatism or liberalism or radicalism, or, or, or … ) have been put into place to keep our needs satisfied, one way or another. Only when a real crisis disrupts our secured lives (cura means care, se-cura free from care, carefree, as in the name of Frederick the Great’s summer palace in Potsdam, called Sanssouci, French for ‘without a care’) do we find ourselves back in a state of need. If and only if I am writing my way out of a crisis, will I live up to Bill’s example. I’m not yet sure I am.

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