How'd it go?: a memoir of disease, family, faith & hope

Author

Chapter 1:

Present day

Sunday, October 4

(first day after diagnosis)

H ow’d it go?

And just like that I am no longer Dr. Young, but transported through time, back to simply being Paul . . . a twelve-year-old boy walking through a field with my Dad and dogs. It’s hot and humid, typical for an early July day in rural New Jersey. The hills are gentle, flowing up and down, peaks and valleys, tall grass tickling my ankles. I’m walking fast to keep up with his long stride and break into a sweat.

I’d returned from Camp Dudley that morning and want to share it all. I start from day one: getting off the bus, meeting new kids, sitting cross-legged in the shade while Chief told us the rules. As an anxious new camper, the first day had seemed to last forever, but the rest was a blur of campfires, canoeing, hiking, and telling stories, until we were saying good-bye and walking back up the well-worn steps of the bus.

I pause for a second, remembering last night’s bonfire and the kid who yelled out, Please don’t let it end! We all cracked up because just before, another kid was sharing a memory, but needed to stop and compose himself. It was a release, an awkward moment that didn’t affect me much at the time, but while relating my adventures today, I’m surprised to be a bit emotional. My voice breaks. I don’t want my Dad to see me like this, so I look away and pretend to clear my throat. When I turn back, he has disappeared. It’s strange to have just been together on this summer day . . . because he has been gone nearly seventy years.

* * *

I love this field. I love this field. I love seeing my dogs so happy—how they stop for an interesting smell, dropping behind before sprinting ahead. It’s an enormous space, but they stay together: fits and starts, fits and starts . . . We’d gotten the little dog first, a three-legged mutt I’d found wandering around the beach. Mom made me put up signs, but fortunately, my halfhearted search was unsuccessful. A few weeks later, the other dog showed up, so we took him in too. Those were the war years. It was 1918, and Dad was somewhere across the ocean; Mom feared she would never see him again.

I still wonder if those dogs had previously run together; for years, I’d imagined their unspoken lives. Supposedly, dogs have an awesome sense of smell . . . or maybe it was just coincidence, we’ll never know—but they certainly got along well.

As my dad drove down that dirt road, they whined with anticipation, pawing at the window, barking with excitement so loudly it made my ears hurt. Dad turned and yelled, Quiet! but it was futile; the noise only stopped when I opened the door. They jumped over me, scratching my legs with an undefined canine urgency and then stopped a few feet from the car to smell a rock. So much excitement for that? Dogs . . . who can figure them out?

* * *

I keep my eyes closed so the memory won’t fade, trying to recollect every detail, but it’s gone—the dogs having barked their last too many years ago to count. I have a lifetime of memories to choose from, so I try to find another, but my mind drifts back to the present. I open my eyes, but remain still in my bed, not speaking, nestled in a bedsheet-cocoon, hoping neither my family nor nurse will notice. I want to let this moment last just a little longer.

* * *

Fifteen years ago, with the anticipation of the turning of the millennium, there was an article about me in the paper. Funny, because I didn’t do anything to deserve it, I just stayed alive . . . and kept working. It’s pretty much what we are all trying to do; it’s just that I was lucky and did it for a really long time. The reporter’s name was Penny, and she came to my office and asked me all kinds of questions. She asked me what advice I had for others, as if there were some secret only I had discovered. I might have told her: eat more yogurt, eat more fiber, take vitamins, don’t take vitamins, have a lot of sex, don’t have any sex, but we all know the real secret: luck. The more difficult job is to remain present with the fact that you are still alive.

* * *

Sometimes the hand of fate is kind, but more often it is not so generous. I’ve seen it with my patients: good people who walked down the aisle with their young brides and grooms, worked the same jobs for forty years, played with their grandkids until they could no longer live safely alone, then were banished to a nursing home with infrequent visits from busy children. How tragic to see a sharp mind in a fading body or a strong body with a useless mind. Either way, it’s better to be lucky than smart.

Penny had asked me, Tell me about Paul Young, but try as I may, I just can’t remember my answer. It was another lifetime, one of trying to navigate the daily routine of work, family, meals, and life in an aging body.

I guess my answer doesn’t really matter, but if she asked me today, I would tell her the opposite; I would tell her who I am not. I would tell her I’m not an old man trying to be brave for his kids; that I’m not avoiding eye contact with my daughters as they mist up; that I’m not 104 years old, lying in bed, fading in and out of a morphine haze, and attempting to give each memory a last gasp. I would tell her that I am not an old man on his deathbed, waiting to see his bride again.

If I could speak with that reporter now, I would say: Although my daughters’ skin has changed and their hair is now white, the sparkle in their eyes is still the same. When I look at them, I don’t see sixty-four-year-old grandmothers, but young girls running to meet me at the door after work, arms outstretched, their mother behind them with a smile on her lips . . . kids who can’t wait to hug their daddy.

* * *

Since returning home from the hospital this morning, it is sinking in that yesterday’s diagnosis will necessitate a good-bye not only to my girls, but my grandkids, the ones I watched while Grace and Sandy were at work, the ones who are now in their forties with kids of their own—and my great grandkids. I have great grandkids? Me? How did that happen?

I close my eyes and see my mother again. She is young and beautiful, full of passion and life, running across the grass with her arms extended. My father is behind her, walking fast to keep up. They are both so excited to see me; I’d never been away for so long. I hop off the steps of the bus and start a quick pace, excited for their embrace. Mom has forgotten to slow down, and her running hug almost knocks me over.

I smell her hair, feel her tight squeeze; she is ‘home’ and comfort and safety... And then my dad is there. He wraps his arms tightly around both of us. It is hot and they are both hugging me so hard, excited to see me and hear about all the adventures I’ve had since I left. I don’t know where to start. Mom pulls her head back so we can see each other. With her arms extended, our eyes lock, as she asks me simply, How’d it go?

Chapter 2:

Present day

Monday, October 5

(second day after diagnosis)

When the first light appears at the window of my home, I realize I have survived another night. It seems a miracle that I’ve been given the gift of another dawn. The family is gone; it’s just me and the night nurse. I don’t stir, but open my eyes halfway to observe her. She is reading in the corner, only a table lamp illuminating her book. I lie still, not wanting conversation to ruin these most basic feelings: the covers heavy on my chest, a quiet that permeates every nook and cranny, the feeling of air moving into and out of my lungs. Rhythmic. Defined. Eternal.

My family begins to filter in after the sun is up. Subscribing to the no news is good news philosophy, they must have been waiting all night for a call that did not arrive. I have walked many a patient through these end of life issues, only now realizing my understanding was superficial and cerebral. Sandy is still holding out hope that I will have a change of heart and call the nephrologist to consider dialysis; I wonder if she will make one more attempt to sway my opinion.

I greet them with a faint smile as they assume positions in the room, Sandy on my left with a worried expression on her face, her hand resting on mine, anxiously jerking her head forward each time I shift in the bed. Grace and her husband, Carl, are across the room with matching electronic tablets on their laps; they are the voices of reason: stable, dependable, rational. It’s amazing how twins can be so different, but I have a suspicion about the root of their divergence. I take a deep breath in, feeling the muscles in my chest expand, and then let it out slowly. We are all here, waiting. We are all here, waiting, for me to die.

I look out the antique, drafty windows to see the sun has just peaked over the trees in the yard—big, solid oaks that were mature when I arrived at this old Ohio house so many years ago—they will be standing long after I’m gone. I don’t recall them growing an inch since I moved in over half a century ago.

There’s never been a more beautiful early fall sunrise as this morning’s. The news says there will be frost tonight. I look outside, but there’s not a cloud in the sky. Will today be my last or will I wake tomorrow to see the sun melt the crystals from the grass? Of course, when you are 104 and have a hospice nurse by your side, there’s not a lot of mystery. It’s hard to control my thoughts. Is this the morphine talking? Does it even matter?

Grace is lighting a fire in the living room. I hear her open the grate to the grand fireplace, the same one that has provided so much warmth through the years. I can see her through the doorway. She arranges the wood to allow adequate oxygen, strikes a match, and then bends to her knees to blow against the crumpled paper, creating a rush of flame with each exhalation. Grace has approached our fires pragmatically. Sandy has chosen to remain at arm’s length.

I can smell wisps of smoke and hear the crackles as kindling catches. Sandy is at my bed side, and I ask, Honey, go fetch your sister. There is something I need to tell you. Always the dutiful daughter, she obliges, standing and walking into the other room to find her twin. I look up at the hospice nurse, an invited chaperone. It is just us two now; she looks down at me and smiles, but I do not return the exchange. I am nervous.

I have been holding a secret so tightly—a lifelong gestation; respected, protected, nurtured—a narrative which has taken a life of its own—but is now the time to reveal it? Over the years, I have come close: after a second glass of wine at a family dinner, when my daughter Sandy gave birth to her first child, when I was recovering from that hip fracture ten years ago, but inside I’ve always known it would not be until the very end. It needs to be done delicately and deliberately, between doses of morphine when I am coherent.

I can see the jumping shadows of my girls reflected against the wall as they stand in the center of the living room, conversing in hushed tones, momentarily delaying their return. It is obvious that the end is near. I can feel it, like a dog that crawls under a porch to die.

I close my eyes and wonder how does death happen in the wild? Is it different if the animal is young and injured, or if they are dying of old age? Maybe it’s easier when your life was lived outdoors in a constant struggle against predators and the elements. There must be a resignation to the inevitable, a trait that we humans lost somewhere along the way.

As a child, I read To Build a Fire. It’s amazing how Jack London created such an intense and long-lasting feeling merely with words. It was so cold that when the main character spit into the air, his spittle froze before hitting the ground. It’s hard to imagine that depth of temperature. The main character had a second chance, which ended when the snow fell from the branches above as he struggled to build back his fire. That was when he knew. That was when he accepted the inevitable. In the end, he didn’t feel cold, there was no struggle, he simply lay down to sleep . . .

I am that character now; my fire almost extinguished, I am simply waiting. Perhaps there are neurons deep within our brains that remain latent until the very end when they are activated and secrete the ‘acceptance of death’ chemicals. Intellectually, that feeling is here now, but emotionally it is still hard to grasp. After all the time I have spent on this earth, will I really close my eyes and never wake up, never see my room, never feel these sheets, never see my family again?

From the corner of my eye, I see my girls return. Sitting down next to me, Grace’s hand is now over mine; Sandy’s face a mask of sadness and apprehension. I look up with mist in my own eyes and start my story: Girls, do you remember the house we lived in when you were born? It is hard for me to remain measured now that I have started, so I take a deep breath, and push on. You were so young. It was just the four of us; your mother had set up a playroom upstairs . . .

Grace, always the calm and measured one, interrupts, Dad, you don’t need to do this. She looks to Sandy and then to the hospice nurse, who is probably guessing she will hear the typical requests of a dying patient: take care of your sister, be kind to others . . .

The hospice nurse is trained to sense pain, but she fails to understand that mine is more emotional than physical. As I struggle to remain composed and continue my story, she stands and approaches the bed with determination in her eyes. I go on quickly, One morning when you were young . . . My words are rushed: Your room was down the hall. My eyes sting with the memory, and I wonder if I’m having another delusion, but I can see both girls in my peripheral vision. I turn and see they are rapt. I swallow hard and try to carry on, but before I have a chance, the nurse pushes my pain pump. Within seconds the morphine kicks in, creating a whole-body warmth and sensation of release. As I go under, I pinch my leg and feel bodily pain; I am still here. And so is my secret.

* * *

I have always been fascinated by reading the obituaries, more so this year. I tell myself I’m more interested in the behind-the-scenes lives of famous movie stars, politicians, and athletes; in seeing their time on this earth from the beginning to its end. But if I am honest, reading about the deaths of others, brings me a voyeuristic satisfaction; maybe it’s the confirmation that their time has passed and that I am still here. I will not have a New York Times obituary, and even if I did, how could it tell the truth?

Sandy has been helping with my pet project, stopping by before work and humoring me with interesting obits she has found: printing, cutting, and pasting them into an album I keep on the living room table, a growing collection of friends whose only requirement is that we can never meet in person. As I contemplate the story of my own life, I can’t help but compare it to the adventures of these strangers, brought to life by faceless biographers.

Though the stories of the rich and famous are interesting, as I get more into this curious and morbid hobby, I find the most engaging are about lives of which I was unaware. A few years ago, I read an obit about The Great Joe Rollino. It claimed he was the world’s strongest man; he could bend a quarter with his teeth and lift over 600 pounds with one finger. His end came suddenly when he was 104 years old. Some things we have in common, others not; as it turns out, one day he went out for a walk, and was hit by a car.

I have thought of ‘my friend’ Joe often these last few days; as a young man, I would have thought him lucky to be able to even walk at that age, but I’ll bet he didn’t feel that fortunate when he saw the approaching car. Was he going to lunch or planning which friends would join him for dinner? Or maybe thinking about a great-granddaughter in the hospital ready to give birth? Maybe he never even saw the vehicle coming... did he have a few seconds to wrap up his thoughts before he realized they were about to end?

My mind is straying all over the place; maybe those long dormant neurons have decided to activate and the ‘death chemicals’ are finally being released. More likely it is the meds in the hospice nurse’s syringe: so strong, so powerful . . . so welcome.

I see her at the foot of the bed, the day nurse who has been with me the whole week, but I can’t remember her name. She doesn’t exactly have a bored expression on her face; more distracted, far away, vacant . . . Does it get easier for her with each passing patient? Is she thinking about her own life or the countless others she has assisted in their quest for death with dignity? How many fathers had steadfast wives by their side? How many mothers worried about who would care for their young children? How many centenarians in a first-floor bedroom, trying to remain coherent and strong for their two grown daughters, who maintain a sentry-like watch by his side?

I look up to see her watching me. I have been staring, but before I can look away, I realize I am ‘busted’. She returns my gaze with a gentle smile—a warm expression that is at once both kind and knowing, compassionate and understanding. She’s back on the job—well done! A look that is reassuring and tender, a face which lights up the room in a way only youth can. Does that peaceful expression change when her children fight? Does she get frustrated at red lights when she’s late for work? Does she bicker with her husband?

I try again to remember her name, but am unsuccessful, and it doesn’t matter. We have a deeper connection. We are soon to be united for eternity; a patient, and the nurse who helped him die. She seems competent; I haven’t even had to ask for medication. Funny, in some ways I wish she would give me less, as I struggle to remain present with each