It's hard for me to choose a gift for a dying person. My mother-in-law, Mar, was dying of pancreatic cancer when the family assembled on Christmas Eve 2000, and I had tied myself in knots beforehand thinking through all angles and implications of what she might need, or want, or be able to use, and what it would feel like to look at the new thing I'd carefully chosen once she was gone. 

So I wrote Mar a letter, the first and last one I ever wrote her. And whatever else was wrapped in paper under the tree, the gift she gave us was to get out of bed one more time, and laugh and smile with us.

I wrote Dad a letter for my last gift to him. I reprint it here in its entirety.


December 23, 2012

Dear Dad--

To paraphrase Amanda, the difference between taking care of you and taking care of a baby is that the baby doesn't say “Thank you” when you say goodbye.

I don't know when I'll have to say goodbye to you for good, so I wanted to say thank YOU now for taking care of ME.

Thank you for picking me up when I was little. I forgive you for stopping when I got too big.

Thank you for singing to me, for reading to me, and for playing the recorder. Thank you for taking me to movies, plays, concerts, and dances. Your deep love of the arts inspires me.

Thank you for taking wonderful photos of me and other family members.

Thank you for trying to get me to stop eating lettuce and grapes to support farm workers' rights. Thank you for joining the March on Washington. Your liberal values have helped guide me through life.

Thank you for supporting me, emotionally and financially, even when you saw little of me. All around, of the all the divorces I've heard of, yours seems to have done the best at maintaining civility and love amongst a family divided.

Thank you for your good humor and tolerance for change, and your amazing adaptability. You have helped me understand how to communicate the important things better. You've taught me how to age with grace.

Thank you for letting me take care of you during this amazing time, this gift of days and hours. I will always treasure the relationship we've created out of what the Dalai Lama calls “the daily experience of hardship.”

I feel there is no way to say what I need to say completely enough, so I'm grateful I can share yet more time and love with you.

Love, Pearl


Postscript: After Christmas Adam, I noticed the letter lying around, unopened. I didn't know what to say to Dad about that, and there were a lot of other pressing matters (like hydration, and positioning, and bed-bath scheduling and hospice personnel visits). Eventually, Carol and Amanda mentioned that he was nervous about what was in the letter, and that he wanted me to read it to him. I did, and he smiled and thanked me.

When — despite the radical contingencies, the happenstances, that you know have determined so many aspects of your life, beginning with your very conception — you start trying to shore up its fragments into some kind of organization and meaning, your memory, despite its notorious unreliability, provides the most important information. It has already verified and falsified and winnowed the past in a way that begins to form, for you, patterns and through-lines.  — Daniel Menaker, My Mistake 

The question arises: Did my father act the way he did because of his symptoms or his personality? He died of a rare genetic disorder called Adult-onset Polyglucosan Body Disease (APBD). Symptoms of APBD include "gait difficulties" and "sensory loss predominantly in the distal lower extremities" as well as "mild difficulties in cognition (often executive dysfunction)." By the time he received this diagnosis last fall, it hardly mattered. He'd begun to have strokes after a year of other, often mysterious reasons for hospitalizations, and it seemed most likely he would die of a stroke. 

The ABPD diagnosis followed 20 years of "no-diagnosis-means-no-prognosis" uncertainty. The only thing that seemed certain about his disease was that it was a progressive neuropathy, meaning that over time, more and more nerves died off, and he became less and less capable of moving his lower extremities. 

What seemed less certain was how much of the Dad's behavior was due to his disease. Dad was a renowned slow talker, and before he got a wheelchair, a painfully slow walker. I referred to him as "Our father who walketh ten paces behind us." Would I have mocked him if I'd known his nerves were degenerating for a long time before he displayed more dangerous symptoms, like falling off his bike? 

His speech could be so deliberate that at times I forgot what question he was answering. During his year of repeat hospital admissions, medical personnel would remark his slow speech, and I'd respond that he always talked that way. He was a mathematician, and enjoyed logical, precise, specific speech. Once he complained about people using "numeral," "number," and "digit" interchangeably. He maintained that he was truly confused by the colloquial blurring of definitions.

In the rehab center he went to after a storm of strokes, he had exercises where he was asked to name a set of objects. I held my breath as he stared at a pen, willing him to name it. After a long pause, he came up with, "Papermate ball-point pen." We laughed, his audience, in relief that he got it, understanding that he needed to show complete mastering of naming. Today, I thought, we have the naming of parts.

There were times when I wasn't sure if he was having trouble hearing, mentally processing, or being serious. He had a habit of repeating back nonsensical mishearings, and I told him firmly that it was important to me to know whether he was having trouble hearing or thinking. He persisted in what seemed like perverse cuteness until I asked the speech therapist in his rehab facility for help, and she suggested he use the prompt, "Say it again, please." Mostly, he did this. Mostly, I do it with my kids--except when I think it would be hilarious to repeat back the weird thing I thought I heard them say.

Symptom, or personality?

Pearl: Were the Olsens Jewish? 
Steve: Is, is Naomi Jewish? 
Pearl: I’ll have to ask Naomi. 
Steve: You’ll have to ask Naomi? 
Pearl: Yeah, if she’s Jewish, but, uh... 
Steve: Well, you’ll have to explain what it means.

The Christmas season for my family includes 3 days of celebration. My mom has dibs on Christmas, my in-laws get Christmas Eve, and my dad and stepmother--a non-Jew and a non-Christian--have hosted "Christmas Adam" every December 23rd for 30 years. 

Last year was Dad's last Christmas Adam, and it was the first year that my sister Amanda and I happened to tell Carol, our stepmother, that it was our favorite holiday event. Christmas Adam was always mellow, low-key, delicious, warm. The year before, when Dad was not very well, Amanda and I made it clear that we needed Christmas Adam to happen, and we'd be happy to do all the preparations. That was a sad year because Dad was exhausted from multiple hospitalizations in the months before and from the compounded problems those hospitalizations both discovered and created.

Last year might have been a little sad, but it was more truly a celebration. Per the Latin root of celebration, it was "numerous, thronged, and renowned." Everyone was present who could be, and we took a series of family photos centered on Dad in his hospital bed in the dining room. He was happy. And he was dying. He lived nineteen more days.

This year, we "bravely" went forward by recreating all the necessary elements of Christmas Adam: an evening gathering, multiple orders of our favorite antipasto plate from a local restaurant, cookies galore, a big pile of presents for the children and tokens passed between their parents. The antipasto was augmented by simple dinner items. As in years past but not last year, we sat at the table and ate too much.

What we didn't do is acknowledge the big hole, the space Dad filled. We didn't do or say anything special or formal or ritual or spontaneous. Carol did buy some of the almond bark Dad liked. She made sure to put it on a separate plate from the peppermint bark because Dad wouldn't have liked them to mingle. She mentioned him a couple other times, and I heard her, and I nodded, and I said nothing more. None of us took the opportunity to toast or tell stories or cry in the corner. I hugged Carol and Adam, my half-brother and the namesake of the event, longer than usual, trying to silently communicate something I couldn't figure out how to say.

So in a way, we succeeded, and in a way, we blew it. Amanda and I--especially Amanda--put a lot of energy into other ritual moments in the past year, and it felt to me like celebrating Christmas Adam was a triumph of joy over sorrow. Actually, in the weeks leading up to the 23rd, I envisioned a sad and subdued version, and after indulging my imagination for a while, I decided that I would just live in the present and not anticipate what sadness might come. While I ended up feeling pretty good about the evening, I also ended up feeling the loss of moment, the lack of a decisive, overt marking of the first year without Dad.

We'll have another chance, though, lots of other chances. Amanda read something in a grief resource that pointed out that just because we didn't figure out a special ritual this year, or this day, doesn't mean we couldn't recover from that in the future. It doesn't mean we couldn't say to each other and to Carol that we wished it had been different. It doesn't mean that next Christmas Adam can't be different, more attended to and aware and ritualistic. 

It means there was a silence, and there will be another chance to make our noise joyfully. 

There have been moments in the past couple weeks when I think everything is current, copacetic, under control — and then there are moments when I'm re-living every Christmas from the past 47 years and I go completely infantile. 

Luckily, I have my family to keep me going. Sometimes I just keep on going and sometimes I go too far. They help keep me from going off the edge though as I find myself going blank or going mad I can't help wondering if I'm the source of all problems. I am the mother, after all.

Let me introduce my cast of characters, my supporting cast, my support system.

On the bed, PEARL KLEIN begins to move: throwing off a sheet, moving intently to a sitting position without using leg or abdominal muscles, taking off the hat a navy-blue pullover shirt that seems to get stuck a couple times. The sense is of effort and imbalance: will she fall?

The reading ends in mid-verse. Pearl's demeanor shifts, and she springs up from the bed. She lays the blue pullover carefully across the bed, arms spread wide.

PEARL
(to audience)

Relics. Photographs, letters, voicemails, birthday cards. Manila folder tabs. Pencil lines spidering across miniature lined notebooks.

When my father was dying, I was afraid he wouldn't leave enough relics. I recorded our conversations, and his conversations with visitors, and one side of his phone conversations. I recorded him reading his favorite poems: "The Love Song of J. Alfred Prufrock," "The Walrus and the Carpenter," and "The Old Sailor."

Dad spent the last months of his life revisiting the relics he had kept for decades: photographs of his beloved Aunt Gert, letters from his first girlfriend, Nancy Behr, books, movies and TV shows he treasured.

Today, nearly a year after his death, I locate Dad in relics. When I hear his voice reading a poem, or read a letter he wrote to his brother in the '70s, his inflections and sentence structures become more firmly lodged in my memory, replacing the time we spent together with a document of time together. Each relic begins to gather its own dust.

Last fall I invented Stand-up Tragedy. I was unable to focus on work, so I started to wonder if I could make money from what I did easiest: crying. In Stand-Up Tragedy, those people who can't cry, those who marvel at how easily I can cry, might benefit from watching me cry. Or by crying themselves. So I had to decide: Would I tell the stories that made me cry or made the audience cry?

While I was working this out, I practiced by going home from a day with Dad and telling my son the saddest things I'd heard that day.

PEARL returns to the bed and sits on the edge. As she becomes STEVE, she retakes his posture.

(to Steve)
How long were you and Mom separated?

STEVE
Let's say April.

And Amanda, who was two, sometimes stood at the window and said, "Daddy, come home." Which had a, a profound effect on me. I was in the car. Driving, about to drive off. She doesn't know when it was. She doesn't remember it.

PEARL
(to audience)

This relic belongs to my sister, Amanda. She may remember it or she may not, but no one alive remembers the funeral of Pearl Klein, my father's mother, my namesake. We asked,

(to Steve)
Do you remember anything about your mother's funeral?

STEVE
Of course. I mean, one thing: Aunt Gert broke down and leaned on her tombstone and cried, and my sister Laura com-for-ted her.

PEARL
(to audience)
Something similar occurred at my father's father's funeral:

STEVE
My stepmother Anne was crying, and Tante Rose told her not to cry, and, I thought that Anne should be given the freedom to cry. And I don't know, I don't know whether I defended her or, you know, or stuck up for her.

(responding to a question)
Becauss it wasn't dignified.

Pearl rises from the bed and returns fully to her own embodiment.

PEARL
(to audience)

Now that Dad is dead, I decide for him what he would or wouldn't want. Dad wouldn't want me to cry over money. Dad would want me to read his letters. Dad wants me to be happy when I think of him. The truth is, how the hell do I know? I'm looking for answers in the conversations I recorded with him, recordings which share a quality of photographs: What is recorded narrows down what is remembered, moments that endure while unrecorded moments dissipate.

The unrecorded moments dissipate. That's why I used to prefer movies over live performance. You could see the same thing again and again, and while your memory might shift, the images and sounds would maintain integrity. But you can't see the same thing twice, whether looking at a recording or not. The thing you see is different when you see it a second time. Except when you have dementia. Dementia makes everything old new again.

Dad is dead. I still have a lot of important questions. Though as Dad would say when he declared a question important, "Why is it important?"

Pearl moves back to the bed and takes Steve's position.

STEVE
So, we, we're, we're uh trying to date things. '52, ah. Now, don't forget to note it's an American Airlines DC-6, uh, direct to LaGuardia, with stops in... hah... at Dallas-Ft. Worth and Cincinnati.

PEARL
(to audience)
Some questions can be answered through research. "Where did the DC-6 to Long Beach refuel?" or "What's the address of the Hebrew Home and Hospital for the Chronic Ill?" These things are in the historical record. Somewhere. Somebody else can remember them.

Dad and I talked about who would "actually" know and about who can tell you the truth and about fact-checking, but, the truth is, to me, what's true is that in the story of our lives, the perception is really significant.

STEVE
Ah, I was talking about that to Nancy Behr! In 1957. About the photogra - ph-photographs. I told her that, it wasn't necessary to take uh, photographs. Don't, you don't take photographs for documentation, you take photographs for art.

Pearl lies on her stomach as a teenaged Nancy Behr.

NANCY BEHR
As soon as I wrote you about the taking of pictures, I convinced myself that you were all wrong. I brought my camera the next day but I did not have a chance to take any pictures. But I will.

Pearl returns to her feet, addresses the audience.

PEARL
I have Nancy Behr's letters and I have a recording of me reading the letters to Dad; he recalled this argument -- "you were all wrong" -- from when he was a teenager. Instead of a relic, we only have the reconstruction of the conversation that was obsessing Dad, not the letter Nancy received from him. But I know Dad's philosophy of photography: Once you frame a moment in words or images, the pieces left outside of the frame tend to disappear, or at least become less bright and clear, fading as the image replaces them.

Dad took photos of his kids as a way of engaging with us. He saw his photographs as collaborations between himself and the subjects. I am still collaborating with him. I am capturing pieces of him in the frame, and soon the pieces will become Dad and Dad will be in pieces.

And committing myself to paper makes that come sooner, though it also acts as a fixative on the images I do have. If I commit everything I remember to the page or perform it here for you, then Dad will live. Once I commit everything I remember to the page or the stage, Dad will only live there, and in that way.

And I will be responsible.

And the responsibility paralyzes me.

And no matter my responsibility, Dad will always be dead. And Dad will always live.