Sunday, March 28, 2010

Goodbye, Goodbye, Goodbye: Jim Steinhardt’s Eulogy

Today, Sunday March 28th, we held a memorial service for my father, Jim Steinhardt, who died two weeks ago.  We celebrated his life of nearly 93 years, and we said goodbye. Family members gathered, some who hadn’t seen each other in eons, since childhood or a landmark event long ago, when we were all younger and skinnier.

My many mommy friends came to offer support, bear witness; and so did my Mother’s last few remaining ones: tough old birds and goats who, like my folks, had lived long and had the white hair and softly leathered faces to prove it.  Anyone who wished to share a memory of Jim was invited to speak.  First I read an abbreviated version of my blog post, "Nearly Finished Business" written in early March, when it was clear it was near the end of Dad's life.  And then I read this eulogy:

Well, Dad, you broke your word: you always told us that you were going to live forever.  You had too much to do, no time for this dying stuff.  Like Woody Allen you preferred to achieve immortality through not dying, but barring that, you certainly wanted to do it through your work living on. And it will.

What a body of work it is.  My father had quite an eye, and wasn’t afraid to use it.  He thought his taste was better than anyone else’s and he was usually right.  He was an artist through and through: a painter, a sculptor, but most of all a photographer; he used his camera to show us the world we looked at every day, but never saw.  

My father was a loving and generous, though not perfect man. I know that the father of my childhood was a very different one than my sister Lois and my brother Bruce had, and then the father of my adult years was different still: more present, more connected.  In the same way, he was a very different husband to my mother than to his first wife, Janet, those many years ago.

My parents had a love match that lasted fifty one years. I can only hope to be so lucky.  They met in summer, at a resort in the Berkshires called The Music Inn, each having recently come out of a relationship; my Dad a marriage, my Mom… not quite a marriage (they were shacking up).

They liked each other fierce and found out they lived mere blocks away in Greenwich Village.  Vowing to play it cool and go slow, they then proceeded to see each other every day, becoming inseparable as soon as they got home to the city. 

My father knew that my mother’s previous boyfriend had asked her to marry him many, many times, and she had held off, knowing he just wasn’t quite the right one.  Hopelessly smitten and hoping that he WAS the right one, my father soon proposed, saying  “I’m only going to ask you to marry me three times, and this is the first.”  She said yes, of course, (who could resist such a handsome and charming man) and the rest, as they say, is history.

One thing my parents had in common, was that they had both spent many years in and out of psychoanalytic psychotherapy.  A therapist Dad went to late in life spoke to me with amazement that a man in his 80’s was looking to change and grow, become a better self.  And that was my Dad: wanting to do more, go further, an explorer to the end, his openness to transformation one of his most admirable qualities.

My father struggled with feelings of worthlessness, mixed, of course, with an overblown sense of entitlement, a not uncommon brew.  As a child, he had felt inferior to other boys who had present fathers, when he did not. His own father was barely there, sporadically coming and mostly going, leaving Dad a lost boy, fatherless.  At 92 he still felt the sting, still cried at the memories. 

He told me the exception to this was at camp where all the boys were temporarily fatherless, like him.  Shy and receding at school, at camp he excelled, becoming captain of the basketball team, a lead actor in plays -- directed by the camp’s drama counselor Julie Garfinkel, known to the world as John Garfield.   Later in life Dad grew more and more into this, his camp self, and that was more the man I knew, confident in his decisions; a man who knew what he wanted and made things happen.

So, Dad was not one of those silent, cipher type fathers.  He was a great story teller, self reflexive; the stories he told - of childhood, his first marriage, his working life - were not just descriptions of who, what, where.  He told his stories from the inside, sharing thoughts and feelings, analyzing the ways past events had cascaded down through his life shaping and shading the present.

So I can say that I truly knew my father. And while nothing makes the pain of his loss disappear, it does lessen it, because I have all these stories living on fully inside me. 

One of the stories he told me was of a pivotal moment, one of those junctures which mark a sharp “before” and “after” forever on our personal timelines.  This moment came to him while folk dancing.  And Dad came to dance through my mother.  She had been an International Folk Dancer in her youth, and was she ever graceful, (still is).

After I had left home for college, and my parents had their evenings once again to themselves, my mother found a regular folk dance group nearby, and since they were that kind of couple, she took Dad with her.  Not a natural joiner, he came along a little reluctantly at first, and then with blooming enthusiasm. 

Dad told me that back in his earlier days, he had always felt very separate from other people, more of an observer than a participant.  He confessed that he had in fact, been somewhat of a snob.  Considering himself an intellectual, he felt different, superior to the common folk of middle America (his passion for football notwithstanding).   He would resist engaging in conversation with strangers, thinking, “what could I possibly have to say to them, or they to me that would be of interest”. 

Then one day when he was beginning to dance regularly with my mother, he stepped into the circle to begin a dance.  As he took the hands of his fellow dancers on either side and began to follow the steps, he felt something new: he felt himself move out beyond the borders of his skin, to flow into the person on his right and his left and then he felt them all becoming one circle; the dancers becoming the dance.

It felt like community, that thing he had never known: a joining with others vastly different, yet the differences not mattering as he danced in step with these other humans.  He suddenly knew that what connected him to other people was larger than what separated him from them. This was a visceral and completely spontaneous moment of revelation for him.  And he said it changed him forever.

This wonderfully coincided with the beginning of my parents’ period of grand travels.  For twenty years, they explored the world together. Mom and Dad took trips to Greece, Hungary, Italy, Turkey, Alaska, Mexico, Trinidad, and Israel, to name a few places on their expansive itinerary.

And these were not your standard touristy tours of national monuments.  Because my father was a photographer and because my parents were now both people-engagers, which my mother had ever been, they went deep into the hearts of these places, seeking out the spots the locals frequented, letting themselves enter into the “is-ness” of a place.

Dad photographed seine hauling fishermen on a beach in Grenada bringing in the catch, and then grabbed the rope to help pull.  My parents wandered into a village, deep in the upcountry hills of Bali, where preparations for a wedding were taking place, and they stayed the day, joined the wedding party, and Dad spontaneously became their wedding photographer.

Even when they took tours, these were folk dance tours, and they involved going to small villages, learning the local dances from the people who lived there, then joining hands and joyously dancing together with them. 

What afforded them these wonderful trips was that the business Dad had owned since he quit advertising photography in 1963, the Steinhardt Gallery, had finally become an incredibly successful gallery, mostly of American and International Handcrafts (that international part allowing them to most conveniently - and truthfully - write off most of their trips as business expenses.)  My father and mother ran it together by then, and the 1975 move from Westbury to Huntington was perfectly timed to coincide with the resurgence of Huntington’s downtown.

While Dad had never set out to become a businessman, he ended up as a happily successful one.  And a big part of this is that he ran the business like a family, in a good way. Everyone who worked there, and all the artisans they dealt with were treated with fairness and respect, and, always, warmth and humor.

There was this feeling growing up that the gallery was another entity, the fourth member of our nuclear family.  I was in on it since the beginning, as a young girl spending Saturdays there with Mom and Dad, crayon coloring on matte board scraps.

By the time I went off to college I was a full time staff member: sales clerk, assistant buyer, gift wrap specialist (I was good with the odd shapes).  Working with my father brought a collegial familiarity that anyone who hasn’t grown up in a “mom and pop” shop doesn’t quite get.  And I’m so glad that I got to have that.

Some time after my parents sold the gallery and retired to Florida, a private collector of photography found my father and bought a body of his work, a big fan.  And this reawakened in Dad a burning desire to have his photographs not be forgotten.

My father often told me that he never became a famous photographer because of a nearly Shakespearean series of bad, unlucky breaks combined with a retiring personality.  He said “I wasn’t good at self promotion, something always held me back.” 

Anyone who has spent time with him in these last years of life knows he has now made up for that.  He became fond of telling anyone and everyone in earshot what a great photographer he was.  And he was not wrong, his best photographs are astonishing.

We who have lived with these images for many years have maybe developed an over familiarity with them and are used to their beauty and lyric vision, that amazing eye Dad had.  But looking over his work recently, preparing for this memorial, I was again stunned by their power.  He does belong in that pantheon with the “greats” and it is my one regret that I could not muster an all out campaign to bring him to an even larger audience in his lifetime. 

And in his later years he so enjoyed the recognition, basked in the spots of bright light that came his way as he was being rediscovered by the photography community.  B&W Magazine, a high end, high gloss, fine art photography magazine did a lovely four page “spotlight” feature on him.

His work now sits on the walls, and in the vaults of some major players: The Jewish Museum, The Brooklyn Museum of Art, The De Young Fine Arts Museum of San Francisco, Eastman House, The International Center for Photography, The Museum of the City of New York, and I could go on.

Just last year, The National Art Gallery in Washington, D.C. acquired a body of his work for their permanent collection, and it made Dad very happy to be considered a national treasure.

In 2006, a photograph of his from the Metropolitan Museum of Art’s permanent collection was chosen to hang in the wonderful Susan Sontag tribute show “On Photography”, illustrating a paragraph of text about finding beauty in the mundane, the discarded.   We didn’t find out about this until the very end of the show’s run, as the curator had only my parents old Florida address and it took months for her letter to wend its way North to the senior residence on the Riverdale / Yonkers border where my folks were then living.  But as soon as we knew, I rushed my parents into the city to meet the curator and see the show, just in time.

Dad’s health was in a bit of a downturn at that moment, so he was frail and needed to use a loaner wheel chair to visit with his photograph in a gallery on an upper floor.  Still, seated in front of it, he had the singular pleasure of looking at a photograph of his hanging on the wall of the Metropolitan Museum of Art.

As he sat there, some young European tourists approached him and asked if he were not indeed the photographer, Jim Steinhardt.  It turns out they were German photography students, had studied his work at University, and were thrilled and honored to meet him.   Dad glowed like the sun that day, in spite of his infirmity.

And throughout all the ups and downs the roller coaster of his health has taken in the years since, one thing has remained constant: whenever, however he could, Jim would work; planning books on his themes: children at play, men in the street, the abstract beauties of ordinary objects.

Looking over his photos, he was visiting with old friends: the cement worker, shirtless, sporting six pack abs – that always sells well in his San Francisco gallery; 4 year old Bruce enduring a haircut; Lois, a living doll far cuter than the windowful behind her; a man’s crooked arm, hand clutching cigar, dangling pearls; inside the protective embrace of a giant stone eagle, a woman reads a book, absorbed; a faded doyenne seated at a sidewalk café, contemplates the abyss; a bespectacled Santa reading the paper, sips a cup of java.

Dad went through his old negatives again, finding hidden gems, wondering ”why the hell didn’t I print this the first time?” 

And there was, of course, that other constant in my father’s life, my mother, Sylvia Heimer Steinhardt, whose love and support made all Dad’s work possible.  And then, at the end, when even the work had finally drifted away, there was still my mother, their love.

When he still had words, he would tell her over and over how glad he was to have her, how much her love meant to him. It was not easy to care for him in these last, plummeting, months, when he would senselessly rage, as well as praise. But Mom made sure to only curse him out when her back was turned to him so that, deaf, he would have no idea. 

At the very, very end, he hated to be parted from her for even a minute, knowing that she was all that he needed. And there was my mother, holding Dad’s hand, softly rubbing his back; his beacon against the coming darkness.

Through the magic time machine of Facebook, I have recently reconnected with a number of childhood friends that I had not spoken with for decades.  As I had posted a notice of my father’s passing, a number of these friends have reached out to me, and it has been wonderful to hear from people who knew my Dad in his prime.

He has been slowly fading for so long now, that most of my current friends have only ever seen the shadow father, deaf and weakened with only occasional sparkle. I’d like to read a note here, from Alice who was a friend from 3rd grade on through high school.

“Dear Varda,
Joan sent me the message about your father’s upcoming memorial service. I wish to extend to you my deepest condolences for your loss. I always remember both of your parents with fondness. Your father was warm and funny and your mother always open and loving. Your mother called me ‘Alley Cat’; it made me feel special that she had a nickname for me. What I remember most about your father was his free, artistic spirit, which made me think anything in life is possible.
With best wishes, Alice”

Dad I like to think that you have passed on your “free, artistic spirit” to your children, your grandchildren and all whose lives you have touched, if ever so tangentially, like those German students at the Met.

I remember when I was a teen and you were teaching photography at a college – a feat you were so proud of, having never made it beyond high school yourself - you had gotten your feedback evaluations and it made you so happy that your students had loved you, had written glowing reports of how encouraging and inspiring you had been to them.  It was important to you to feel that you were passing on, handing down to the next generations something of import; you couldn’t give your students your incredible eye, but you could help them to open up their own and teach them to see like photographers. 

It is a legacy to be proud of.  You were a father I could be, and have been, proud of.  You will live on, both as a person in the hearts and minds of those who have known and loved you, and as an artist: the beauty and depth of your work astounding and inspiring a multitude more.  Goodbye, Dad.  I love you.

Thursday, March 18, 2010

Why, Oh Why?

An old Pete Seeger children’s song* has taken up residence in my head. It goes: “Why, oh why, oh why, oh; why, oh why, oh why? Because, because, because, because. Goodbye, goodbye, goodbye.”

This is the perfect personal funeral dirge for my father for oh so many reasons, not the least of which is that my father in his older years bears an uncanny resemblance to Pete Seeger. They are both of them old men of an age, with oversize glasses, thinning white hair, slightly scruffy white beards, significant noses, intense blue eyes, and weathered faces of good humor. And it’s not just their faces, it’s body type, and even more, an overall physicality, the way they hold themselves, gestures, nearly unnerving in similarity at times.

And then there’s more than just the physical, it’s the spirit: strong willed, iconoclastic, full on artist down to the bones.  A resemblance so strong that when I met Pete in person, I almost called him Dad, that when Ethan peeked over my shoulder at Pete on the computer he said “Let me see that cool picture of Grandpa.”   I know that when next that lovely Pete Seeger documentary comes on PBS, I’m going to bawl my eyes out, seeing Daddy, Daddy, Daddy.

So it’s all there in that song -- the ultimate question, the ultimate answer, and the ultimate. Why? Because. Goodbye.  Do I even need to say more?  Obviously I do, because I am going to.  My husband, Danny, calls it “long form” when describing why a conversation with someone went on for hours, and yes, obviously, I’m prone to it.

So this is my refrain now: “Why, oh why?” and it’s nothing to do with why he had to die.  That’s my poor mother’s broken lament; bereaved and bereft, she has had half her heart torn asunder.  I know how old and worn his heart had become, the unfair gift of living beyond the years our bodies were originally engineered for; the parts are past warranty and sometimes they just go. Ninety-three is a goodly long time and I would feel greedy for wanting more, a fact often pointed out to me by my husband who lost his father as a teen, never to see him grow painfully old.

So my big “why?” is not to the universe, it’s internal; for me, to me: Why did I get on a plane to Vermont on Friday morning when I knew there was a 50/50 chance my father wouldn’t make it till my return Sunday night?  And any answer I can come up with for that is dicey. It reeks of the clear vision of hindsight.

The full on truth is that I do not know what propelled me to continue with my plans for the Vermont trip, whose significance will be spelled out in a bit.  After I went and then returned in a hair raising, white knuckle airplane ride on Saturday through a huge nor’easter, my friends all comforted me with the common wisdom that while parents will often wait for an absent child to return before they die, they will also often wait for a present and care-giving child to leave before they feel it’s OK to go.

We can’t know what Dad’s process was in all this, his thinking folded under the veil of his infirmity.  But I do know this: on Thursday night my sister Lois, Dad’s other daughter, was coming up to New York to be with him.  Before I left I stood beside his bed, took his huge, gnarled, but amazingly still strong hand in mine, put my face inches from his and looked deep into the blue blue of his eyes.  I knew he was lost in there often, but for that moment he swam up to meet me, not quite at the surface, but close enough that I knew he knew I was there.

I told him I was leaving and Lois was coming, that I would be back in two days.  I told him my brother Bruce, his son, was coming on Saturday.  I told him that I loved him, that I knew he loved me. I thanked him for always believing in me and always supporting me.  I told him he was the best father a girl could ever have.  Even if not 100% true, and my 20 year-old self would have howled at all this, it was enough true that at this point I could say it and mean it and give that to him. 

I asked him to wait for me, but told him that if he couldn’t, if he had to go before I came back, that I understood.  And I kissed him, and I kissed him again, and I left.  This was the last time I saw my father alive.

My cousin Jessie says that among her many friends who were at her gathering in Vermont, when she told the tale of my absence, she heard many similar stories: of parents who would not die, who clung to wracked, wrecked, pain filled bodies beyond all sense, until their children signaled it was OK to let go by taking leave for a bit.  The theory is that by telling my Dad I was going, I gave him permission to die.

I’d like to think this is true, that after all the being there, clear eyed, for every gruesome thing on this journey, I hadn’t just bounced into a bubble of denial.  Because when I left on Friday morning, after calling the hospice to see how his night had gone, to see how he was doing, I really thought he was going to wait for me, that he would still be there Monday morning when I would waltz back into his room.  There were, actually, some reasons to believe this. 

He had arrived at the hospice terribly dehydrated, having not taken much of anything in for two days prior.  And besides the fluids flowing into his veins through the IV, he was actually eating and drinking a bit now, too. A half cup of juice here, a few slurps of soup there, even a whole bowl full of applesauce, twice.  And he did indeed have a good day on Friday: he recognized my sister, Lois and kissed her. Three times.  He recognized my mother and opened his arms and hugged her.  He ate a bowl of soup with gusto.  But it was not to last.  We have been calling it, half jokingly, the New England Clam Chowder of Death, because not long after dinner Dad had a crisis that turned the tide, and then by midnight, gone.

All this was relayed to me by phone, Vermont not the getaway that it was supposed to be, but instead a series of phone calls, intercut with a few moments of rest, food and family.  But in those few moments I was loved and nurtured in a way that allowed me to come home and do all the rest, the sad and ongoing tasks of cleaning up after a life lived.

And now, the “Why?” of the Vermont trip: this is the year I turn fifty, the big 5-0, half a century, officially middle aged (if I’m planning to live to a hundred).  My cousin Jessie turns all our ages 4 months before me, my personal herald, paving my way into the next year.  And since so many of her friends also turn 50 this year, she wanted to make her birthday special, planned a weekend party for just us fiftyish females at a winter lodge up the mountain: a Saturday afternoon of cross country skiing and snowshoeing, then an amazing potluck dinner followed by a giant slumber party at the lodge and brunch the next morning.  Heaven.

There is not room, nor is this the place, to go into why my cousin Jessie is so special and important to me, why my bond with her, in spite of our sometimes not connecting for busy busy months on end, is spider silk strong and permanent. Our lives are intertwined, her children dear to my heart, mine to hers.  I have come to stay with her often enough that I know her friends, and to spend this time together would have been deeply significant to me. 

The other leg of this thing is that this was going to be the first time since the boys were born that I had gone away alone.  In all these years I have never had more than a few hours to myself, have never taken even a train ride, no less an airplane trip by myself.  For 48 hours I was not going to have to take care of anyone.  I had been looking forward to it as if my life depended on it, feeling that it did, telling everyone I was finally getting away. Big mistake.

When Jessie told me date of her party in January, a chill went up my spine, but I ignored it.  I joked about it: “What do you want to bet that Dad decides to pack it in that weekend and there goes my trip?”  But I didn’t think it was actually going to happen, what were the odds?  But really, when I booked the flight I should have just picked up a pen and written in that square on my calendar “Jim Steinhardt to die today”.

It’s like my boys’ birth date.  One pregnant morning in January, when I knew I was having twins, but not yet the gender, and when I certainly had an accurate due date, their being conception known down to the nanosecond IVF twins, I awoke with a vision. Well, that’s not exactly the right term, since there was no startling image involved.  It was more like this, these words bubbled up into my consciousness as if read from a book: “The twins will be born on July 29th.”  And I then went about the rest of my pregnancy with that date stuck in my head, announced it to anyone who asked, even planned my parents’ trip up from Florida with it in mind. 

By mid June, heaving my torpedo shaped belly onto the sofa to splay under the air conditioning, a beached whale, I thought “This is insane, I’m never going to make it to July 29th, that’s 39 weeks, there’s no way I’m lasting more than another month like this!”  But read my boys’ birth certificate: July 29th. 

So even though I never thought Dad would last this long, and even though I simultaneously and conversely thought he was holding out for his 93rd birthday on March 25th, there was this nagging feeling that March 13th was the day, painted like a nasty red target, because on that date was scheduled the one thing big I was going to do, entirely for myself, in seven and a half years.

And so, why? Why, oh why, oh why, oh why; why, oh why, oh why?  The only answer: “Because,” and then, well, “goodbye.”

This song was actually written by Woody Guthrie, and if you want to Google it and hear it, you’re probably going to get Woody's version. It’s lovely, but the one in my head is Pete’s from his 1964 Prague concert album from my childhood.

Monday, March 15, 2010

Jim Steinhardt: March 25, 1917 - March 13, 2010

Right around midnight, as March 12th was slipping into March 13th, my father, Jim Steinhardt, cast loose his final earthly bonds and died.   He chose a quiet moment: my sister in the bathroom down the hall, ill; my mother asleep upright in her vigil chair, a half played game of solitaire splayed on the table before her; me not at the hospital, not even in the state  (but that story I’m not ready to tell yet.)  Lois said a wave of heat and nausea engulfed her in the bathroom, then passed, and when she came back into the room, she saw that our father was gone.

As per my father’s very atheist wishes, he will be cremated. There will be a memorial service for him, convenient on March 28th, so those coming in for Passover can visit with present family and ghost alike.  We will celebrate his life, his amazing body of photographic work, and maybe the birthday he nearly made it to.

I will tell more tales of before and after, soon. I have many half written entries lurking in my computer; also paper scraps covered in badly spelled, semi random phrases, proto-passages hastily scribbled lest my fleeting thoughts flee and leave my memory lacey and bereft.  These will all be carded, spun, woven into thoughtful posts, by and by. But for now this is all I am ready to say.  I am scrubbed clean by grief and exhaustion. And always, too, by the care of young children, which does not stop, not even for death.

So this will be my shortest post for a long and wonderful life. 

Rest in peace, my beloved father.

Tuesday, March 9, 2010

What’s the word?

My father has lost his words.  They have fallen out of his brain, all meaning sifted out.  Left is the dross, the building blocks of words stripped of their meanings, sounds, almost words: Ginnnggg, wishta washtra waaah, burnfurgr shtupf, gaaaaaaah!.  My father sounds like a gibbering demented old man because he is a gibbering demented old man.

And it’s the truly, fully, saddest thing in the world to watch my once intellectual, eloquent, full of ten dollar words father unable to tell us that he is in pain.  We have to look for the signs: his body tense and guarded, shifting around on the bed un-restful, his eyes weepy, his voice burred, the tone of his proto-words pleading. Then, yesterday, finally able to dredge around in his mind to find one true word: “Help!”

And yes, now it’s a lot like caring for a pre-verbal infant.  A while ago, after my father’s first big collapse, on December 17th, 2007 our family’s personal day of infamy, when he fell apart in my apartment, unable to breathe, drowning in heart failure, and 911 came in the nick of time, he had a rather awful hospitalization.

This was the day of my parents move back to Manhattan from the wilds of Riverdale.  Six blocks from my house, so I could keep a closer eye on them, so they could have a grocery store and diner and drug store mere feet from their front door, no longer confined to manicured grounds, dependent upon the whims of occasional aides and cabdrivers or the available time of their daughter to venture into the world. 

What I had not calculated was that the ambulance would feel it necessary to bring my father to the closest hospital where he had no connections.  All my father’s doctors at that time were still up North, but I was told that even though the EMTs had stabilized him with lasix and nitro, time was of the essence. 

If I had had a moment to think things through I would have pointed out that Mt. Sinai was really just as close, as the trip through Central Park is such a quick one, but I was clearly not thinking clearly, in the rush of my first brush with “oh, my God my Dad just almost died”.

And while they might have decent cardiac care in the ER, the ward my father was put into was just terrible.  Since he was stable, he did not go into the ICU, and because of his age, he was placed on a geriatric unit, where the nurses really didn’t give two shits and didn’t want to be bothered with an angry old man in pain.

So when the narcotic pain killers they gave him caused him terrible constipation and they just didn’t care, when they handed me a pair of gloves and told me they wouldn’t be able to get around to removing his impacted stool until some time tomorrow but I could have a go at it if I wished, what could I do but dig in.

This was my first bout with cringe inducing, dignity stripping physical care of my father and it was a doozy.  My big revelation after that was that while cleaning the poop off your baby’s bottom is a loving act full of joy and promise, cleaning the poop out of your father’s bottom is a loving act full of sorrow and pain.

So my father is in a post-verbal state, which is like and so unlike my children when they were pre-verbal; situationally parallel, but oh so emotionally disparate.  You always remember your developing child’s first words, but what about your deteriorating parent’s last?   How can you know that you’ve heard it, and that there truly are    no             more             words                           to                                            come?

When Jacob was a little babe, he had all the earmarks of becoming a language learner: he cooed, he babbled, he goo-gooed on time, he could and would mimic words with perfect diction. One time he reached up to grab my hand while I was changing him; “Careful” I said and he repeated it back to me, clear as a bell.  But then it didn’t happen, he froze there, he wasn’t talking.

As he got older and the specificity of his issues were becoming apparent, I realized how un-hooked speech is from language.  Language in all its human-making glory, requires communicative intent and Jacob had absolutely none. 

As time went on he could label like a champ. Hold up a cup he said "cup", show him a running faucet and he said "water', but when he was thirsty he would just cry and cry.  The parts of his brain that needed to engage to know that these wordy things could be used to communicate his needs, his wants, his feelings; those connections just hadn’t been made yet.  The first time Jake made a request, found words to be of use and not just a neat parlor trick for labeling stuff, I cried and cried in relief.

Ask anyone what makes us human, what separates us from our animal cousins, and one of the first things they’ll say is language, the ability to communicate thoughts and feelings.  As we learn more about animal communication and how they sometimes can do even that, the distinction is often further refined, drawing the human line at the concepts of abstraction and self reflection, our ability to ponder and pronounce upon the parameters of our existence.  All this, my son Jacob eventually gained, and my father has now lost. 

However, this is all such a simplification, since my father, though stripped of his ability to communicate through words, though un-moored in time and space, is still quite thoroughly human.  Those of us who have known and loved him when he was still who he was, can still see the Jim in him.

This is why we have struggled so hard to keep him home, with support from caregivers who knew him when.  If we were to put him in a nursing home, all they would see, all they would know is the gibbering demented old man he has become, and it is much harder to give loving care when that’s all there is.

My sister Lois, who works in the field of elder care, has said that Dad is not ready to die yet, because he is still processing something, even though we can’t know exactly what.  We have to trust that he’s there in his brain somewhere, doing just that, the final work of his life, getting ready to go. 

I also think of all the non-verbal Autistic children, communicating through their behaviors, communing with the infinitesimal and the infinite that we, too busy, often overlook.  These children whose loving parents know how fully human they are, who hold unknown universes inside themselves, are so often treated so shabbily by the world, cast off because they have no words to trade. 

I think how thin the line is between Jacob and his non-verbal brethren; I think about the time before words, when we did not know if they would ever come, if he would ever understand us, or live “self directed” for the rest of his life.

It’s called the autism spectrum because it stretches so far across many sometime divides, and connects us all.  As parents of children on the spectrum our hearts stretch, too, take us to places we never imagined, never needed to imagine in the time before.

And so I go about my daily life. I pick Ethan up at school, try to look like I understand as he proudly shares his latest Pokemon conquests.  I gently correct Jacob yet again when he calls the female cat “he”.  I hold my father’s hand as he mumbles and raves.

I sit down to write about it all, using words like tiny lifesavers, keeping myself afloat, here in the choppy waters of my little pond, my wavelength of the spectrum, my slice of life.

Thursday, March 4, 2010

Groundhog Day

I have been gnawing at the big thoughts again, wondering how we decide what is of value.  I grew up in a family that emphatically valued experiences over things.  Money was tight.  We drove cars until they died, we re-covered an old sofa so many times I can date family photos by slipcover era: “oh, there’s the green and blue abstract amoebas, it must be 1968 to 72.”

But we went to the movies every week, museums constantly, theater and live music regularly, and took a modest vacation every year.  It is easy enough to say that was good.

Although the world we live in puts a premium on the material, no one would question that building memories is as important as building buildings.  Memories may be ephemeral but count as real, and potentially more lasting than things themselves.  The twin towers are gone, but who among us who have walked in their shadows cannot call them up at will?

But what happens when memory is gone? When the ability to lay down new memories erodes, and the mind sieves everything out every few hours so that all that remains is dust and ghosts, thin wisps of almost memory.  This is the state my mother finds herself in, and it is breaking my heart. 

Today, we were visiting with my friend Elizabeth in her lovely sun filled apartment.  My mother comes to her building weekly to see her therapist, who helps her hold the burden of her nearly unbearable sadness.  I shepherd my mother to all her appointments these days, she cannot negotiate the city on her own.  Too many moves in too few years with a memory deficient brain means she is constantly unmoored, needs steering. 

One time this summer, when Dad was still going out, their lovely and loving aide, Mina, had taken them both to his doctor’s appointment.  Mom didn’t want to go into the exam room with Dad that day, and chose to sit in the waiting room.  Bored and hungry there, she decided to go out to find a nearby blueberry muffin and cup of hot cocoa.  An hour later, Mina, canvassing every coffee shop, finally found her blocks away, wandering, wondering where it was she was getting back to.

Can't you just see it: the irritated calls from the doctor’s office about my increasingly agitated father left alone in the waiting room; Mina panicked, searching; me frantically hunting a sitter so I could come join the fracas, deciding if it was time to get the police involved yet. Oh that was a fun day, let me tell you.

But back to today: after my mother’s appointment, we have a tradition of having a light bite together.  Our regular haunt was the Hot & Crusty around the corner, common watering hole of old ladies and toddlers with nannies.   This suits my mother just fine, as she loves little kids and she is an old lady.  But lately we have been going to visit with my friend Elizabeth and take our tea in her apartment.

Elizabeth is fond of my parents and has known them the best of all my newer, Mommy friends.  Her own family is far, far away in Australia, and she is happy for grandmotherly company.  When I ring her to ask if we can come by this week, she says yes and adds with a laugh “And your mother can admire my apartment again and ask how many children I have and look at their pictures and tell me how lovely my family is again.”

I love Elizabeth because she takes lightly and in stride the fact that despite having met her dozens of times and spent hours in her company, my mother only vaguely remembers my friend, smiling politely at her on the street when they run into each other.

My mother’s ability to record new memories is now so deeply compromised.  Trying to give people a snapshot of what that’s like, I resort to movie metaphors: ”It’s ‘Groundhog Day’” I’ll say.  ”She lives a whole day and when she wakes up in the morning, it’s wiped clean, like it never happened.”   And no, not completely, not 100 percent, but close enough.

Two days home after my father’s disastrous hospitalization that nearly consumed him and us, after spending countless hours with him in the intense and unhappy cardiac ICU, I make a reference to it and she asks: “What operation?  Was Jim in the hospital?”

And I suppose, in some ways, that works for her.  She doesn’t have to remember our holding my father’s arms down as he screams “Stop them, they’re hurting me, make them stop!” to keep him from clawing at the doctors and nurses who are saving his life by applying hard pressure to the pumping, spurting blood vessels in his groin that he had ruptured by standing up and trying to walk away from his bed with a tube still inserted.  This is a precious memory I alone get to keep.

So my mother and I are at Elizabeth’s and although our visits usually coincide with nap-time, this time her two and a half year old daughter, Caroline, is awake.  My mother finds nothing more delightful in the world than an engaged and engaging toddler, and so she is in Grandma heaven.

Since all Caroline’s actual grandparents live many oceans away, she, too, is delighted to have the complete attention of someone who is happy to play peek-a-boo games with her for a length of time that would make most people droop.  My mother is completely in the moment, completely charmed by this adorable little girl, having the time of her life.  When she gets home she will even tell Mina about her how much fun she had today.

I feel very contented that I have provided Mom some most excellent distraction from the deep and abiding sadness that fills her life with my father now.  But I know that next week she will ask Elizabeth if she has any children again, and this takes bites out of my happiness.

This is yet my corollary to those old zen questions; besides that tree in the silent forest, and the one clapping hand: did it mean anything to give my mother this happy moment if it does not become a memory, if it dissipates into synaptic dust?

My father, now curled up inside his mind, will not know, will not remember what we have done, are doing for him.  But we will know.  Ethan, at 5, observing me getting ready to go out on another parent related mission commented: “And when you and Daddy get old I’ll take care of you like you take care of Grandma and Grandpa.”  Yup, kid, you get it.  And like the old saying goes, may we live long enough to become a burden to you.

My sister in law, Bern, went through all this a while ago, twice in rapid succession with both her parents.  She recently wrote me a lovely note and shared this:

“One day, during the time my mother was sick, I was helping her put on her shoes, kneeling at her feet. She looked down at me and said, ‘One day you'll be glad you were here to help me.’ I said, ‘I'm glad now to be able to help you!’ But I understand now what she meant. Because while you're going through it, you're feeling more pain than satisfaction. But one day, I did indeed come to feel how much that caring meant to my mother and thus to me.“

So I guess that has to be the answer for me, that even though my mother will not remember it, I will remember that I gave her this bright, happy moment.  And that will have to be enough.

Monday, March 1, 2010

Nearly Finished Business

My mother and father in 2008
Today is March 1st, my parents’ 51st anniversary.  Not a happy one this year.  My father is 92 years and 341 days old.  Sometimes I think he is holding out for March 25th, his 93rd birthday, to die, like Shakespeare: appearing and disappearing on the selfsame day.  Although I doubt he actually knows what day it is anymore.

But today, for the first time in two weeks, he recognized me!  He woke from a nap and I heard him stirring, I went into his room and sat beside him, cupping his head in my hand.  He turned toward me and his eyes connected with mine and I saw the spark, there again, if just for an instant.  He lit up, he smiled.  “Hi, sweetie”: the first clear words I’d heard from him in ages. 

It was only for a moment, I lost him again a few clock ticks later but it was enough for today, maybe forever. 

When so much is lost, tiny things become huge, a singular moment containing in it a lifetime of love that is still there, inside of me, inside of him.  He may never find it again.  For me it will remain always.

When his worn out and straining heart finally, fatally stops, the rhythm of our lives, our love, his fatherness to me, my daughterness to him, will go on in mine.  I suppose this is why we have children, to pass on the love that is too big for one old heart to contain.   

People have asked how I can so calmly and sanguinely go about this strange business of helping my father out the final door.  How I can talk about it and even make jokes, how I seem able to be ready to let go.

It’s because I no longer need my parents to be my parents.  There is nothing more I need from them, other than just to be, until they can no longer do that.  I don’t even really think of them as parents, more like these sweet old people that I seem to find myself lovingly taking care of; my strange, large, extra children.

Years of therapy, becoming a parent myself and time, just plain old time, has wrung all the angst out of my relationships with them.  I have un-made my hot buttons, they can no longer be pushed. 

We have no unfinished business, my parents and I.  What ever my parents may have done or not done, all the unforgivable moments of my childhood have long been forgiven (except for them giving up a rent controlled classic 8 room apartment on Riverside Drive, and I’m almost over even that).  I am not waiting and longing for withheld love to come un-dammed, or explanations that have not yet and will never come.

They are who they are, they did the best they could, they loved me with all their hearts, and now we are this: a daughter taking care of her childlike parents, who need her now as much as she needed them then, as a mewling babe. 

I don’t think I could have done this, in this way, if I had not myself become a mother some years ago.  Holding my infant sons, holding my frail failing father, is all of a piece somehow. 

It is such a cliché to talk about the circle, the cycle of life, until you are deep inside it, and then it is clear.

The circle is a sphere, it rings like a bell, it beats in rhythm, the rhythm of a heart, many hearts; some new and giddy young and strong, some old, enlarged, faint and fading: the hearts, the hearts, the hearts of my family.

Soon we will be one less.

Soon we will go on.