The Accidental Thanatologist

That is my dear friend Jody and her daughter Lueza. Jody was the first friend I made after Sophie was diagnosed with infantile spasms in 1995 in New York City. Jody's daughter Lueza was only a few months older than Sophie, and she, too, had been diagnosed with infantile spasms and severe cerebral palsy. Jody and I walked the city streets with our girls in carriages and strollers. We placed our babies next to one another in cribs, played music for them, held them and one another. We went to a mothers support group at the hospital on the east side. We despaired and we exulted and we laughed with rue about our new lives. Jody sent me a subscription to a newsletter in those pre-Internet days -- it was called Mothers From Hell -- and was obviously geared toward our sort. Dark, funny, dramatic, despairing and resilient. We both moved to California, her to the north and me the south. We had more babies, she a daughter and me, two sons. We had long spaces and distances but stayed friends, talked for hours and hours on the phone, laughed more often than cried, loved one another and our beautiful daughters and sons.

Lueza died unexpectedly on April 4, 2011. I was driving up Fairfax, crossing Beverly Blvd when I heard from Jody, and I took a sharp right into a bank parking lot, drove down the ramp into darkness, sat in my car and wailed for a half an hour. Whenever I pass that corner, that bank, that ramp into darkness, I think of Lueza and her tremendous light.

Jody is an immensely talented actor, singer and writer. She is adding pieces to her blog, The Accidental Thanatologist, that you must read. It is, as she says, a walk through love and catastrophe.

I love you, Jody and am grateful for your constancy. And your writing is smashing.

Group Therapy

group therapy on The Bob Newhart Show

Who in the special needs world doesn't hate group therapy at a certain part of the proverbial "journey?" Is there anything worse than listening to people from different tribes drone on and on about their experiences coping with whatever messed up situation has befallen them? Is it just me that would rather hash it out, ad nauseum, only to those in my tribe -- especially when things really fall apart? You know: misery loves company, et al. I'll always remember the zing of recognition I felt when I read People Like That are the Only People Here: Canonical Babbling in Peed-Onk, the great short story by Lorrie Moore that I carried, crumpled in my purse, for many years as I trudged around New York City with Baby Sophie. 

A beginning, an end: there seems to be neither. The whole thing is like a cloud that just lands and everywhere inside it is full of rain.

The first person I met back in those days was my friend Jody whose daughter Lueza had suffered a traumatic brain injury at birth. We participated for a bit in a local support group for mothers of children with severe "issues," but it was our shared sense of dark humor that bound us together. During the dark days pre-internet, it was Jody who told me about a newsletter called "Mothers From Hell" -- a sort of antidote to "Welcome to Holland." She was (and is) the sort of friend who Moore so perfectly described in her short story in one of my favorite passages:

She loves her friends, especially loves them for coming,

since there are times they all fight and don't speak for weeks. Is

this friendship? For now and here, it must do and is, and is, she

swears it is. For one, they never offer impromptu spiritual lectures

about death, how it is part of life, its natural ebb and flow,

how we all must accept that, or other such utterances that make

her want to scratch out some eyes. Like true friends, they take

no hardy or elegant stance loosely choreographed from some

broad perspective. They get right in there and mutter "Jesus

Christ!" and shake their heads. Plus, they are the only people

who not only will laugh at her stupid jokes but offer up stupid

ones of their own. What do you get when you cross Tiny Tim with a

pit bull? A child's illness is a strain on the mind. They know

how to laugh in a fluty, desperate way-unlike the people who

are more her husband's friends and who seem just to deepen

their sorrowful gazes, nodding their heads with Sympathy.

How exiling and estranging are everybody's Sympathetic

Expressions! When anyone laughs, she thinks, Okay! Hooray: a

buddy. In disaster as in show business.

So, I'm back for less than twelve hours, and Sophie is having one of her days. She's already had five giant seizures, and I've had to pull out the Diastat and administer it. She's going to miss her first day of Communicamp, and I'm going to spend the better part of the day probably worrying that this is it, the beginning of the end. That's what I do on days like this, that and laundry.

Pulling through is what people do around here. There is a

kind of bravery in.their lives that isn't bravery at all. It is automatic,

unflinching, a mix of man and machine, consuming and

unquestionable obligation meeting illness move for move in a

giant even-steven game of chess--an unending round of something

that looks like shadowboxing, though between love and

death, which is the shadow? "Everyone admires us for our

courage," says one man. "They have no idea what they're talking

about."

I'm not in a support group, anymore, at least not like the olden days, but I do have you. And you and you. I'm grateful for that.

Take Notes. In the end, you suffer alone. But at the beginning

you suffer with a whole lot of others.

***All excerpts are from Lorrie Moore's short story. You can read the whole thing HERE.

Far from the Tree

I haven't read the book, yet. I told a couple of friends who asked that I feel like I've already read the book. I haven't read the book, but I think I'm living the book. I've read so much about it; I've read excerpts; I've read blog posts of those who have read it. I've even discussed it as if I've read it which I know is sort of ridiculous. I bought a copy, and it's sitting in a pile of books by my bed. Last week, though, I had a disturbing conversation with a mental health professional who had some disturbingly old-fashioned ideas about disability, about what it means to have a disabled child, a disabled sibling -- the toll it takes on a family, the horror, the horror. This conversation temporarily undid me until I had a few conversations with my people. The people of my tribe, those whose children have fallen far from the tree. I was lifted by those conversations from weariness to power, so now I might read it.

My friend Jody, who I've written about here many times, is of my tribe, and she has a gorgeous piece of writing on the community page of Andrew Solomon's Far From the Tree website. Please read it. And then read it again. And then think it and live it and then share it.

I'm home again in Los Angeles after a perfect weekend in San Francisco and just outside of it. I spent most of the time hanging out at my dear friend Jody's house. I wore my pajamas until noon, and she lay on my bed and we talked and talked. Her husband made delicious coffee. We went to a ridiculously fancy restaurant on Friday night in San Francisco and ate tiny portions of too-rich and fussy food. We went to a beautiful benefit for a school for kids with severe disabilities -- the school where our darling Lueza attended -- and I sat next to Jody and cried when the slide show ended on her soulful face. Despite the sorrow of Lueza's absence, and it was palpable, the love that surrounded that child fills her home still, and I can honestly say that I have not felt so relaxed and happy and at ease in years. Thank you, Jody and Jacek, for your warmth and hospitality, for your beautiful home and for being such steadfast friends.

We woke up this morning and visited Jody's good friend, ate the most amazing homemade biscuits and orange marmalade (honestly, I could have eaten a jar of it) and sat out on a high porch in the hot sunshine, laughing and talking. After that, Jody drove me into the city to my blogger friend Sally's house where the famous Maggie lives, and after listening to Maggie's jokes and chatting a bit in their wonderfully quaint San Francisco home, Sally drove me to City Lights, where I raptured in the poetry room upstairs and purchased a small stack of black and white postcards of poets and a copy of Jack Gilbert's The Dance Most of All.

Sally and I walked to North Beach and ate eggplant parmigiana sandwiches at a corner bar and continued a conversation that lasted all the way through lunch and to the airport several hours later when she dropped me off and we decided that meeting one another was exactly what we had expected and that we'd known each other forever. 


Reader, I've a perfect score on melding my real life and my blogging life as every single blogger I've met personally has been an unequivocal pleasure. I'm awed by this and very, very grateful.

Where my heart is today

Today is the one-year anniversary of Lueza's death. My heart is with Jody, her mama and one of my dearest friends. I am so grateful to have known Lueza, to have held her in my arms and loved her. I miss her.

What's given and what's handled

Is the ability to hold two opposing feelings and/or thoughts something that one is graced with or something that comes with time and experience and exposure? I don't know the answer, but I see it all the time in those who share the experience of caring for a child with disabilities or who have lost a child to illness. I can look at Sophie and grieve for the loss of "normalcy," but I can also exult in her being exactly the way she is. I can sorrow over the absurdity of changing a near-seventeen year old's diapers and marvel at the gift of intimacy that entails. My friend Jody's beautiful daughter Lueza suffered from severe cerebral palsy due to gross medical malpractice when she was born, and she died unexpectedly nearly a year ago at the age of sixteen, but Jody told me the other day that it was such an honor to have cared for her daughter so intimately for so many years. I'm not talking here about all that unconditional love blather, although trite expressions are trite for a reason. I'm heading toward an understanding of openness -- of what it means to be truly open to experience, to the relinquishment of false notions of power and control, to, dare I say it, Love. I wouldn't be able to live, one person might say, hearing of the death of someone's child.  I could never do what you do, another says, I just couldn't handle it. 

Contrary to what some might say, we're not given what we can handle. We're opening to handle what we're given.

Blue blue windows behind the stars

Neil Young and his wife Pegi held their annual Bridge School Benefit on Saturday, and I thought of my dear friend Jody and her beautiful little girl Lueza when I saw this clip of the man himself and Arcade Fire singing that blue blue song Helpless. I know Jody was there with her family and Lueza in their hearts.

Sunday Reverie

Up early with the light to make frosting and decorate cakes, I see that the Earth has tilted just so on its axis and the light streaming into the windows, this second day of October, washes over the table in a slightly different way than it did yesterday. I blink and it tilts again; I close my eyes and think of Lueza, the seventeenth year of her birth, her smile in my mind's eye, the tilt of her head, and I am spinning with her memory, different than yesterday.

Lueza

The first friend I had in New York City when Sophie was a baby, newly diagnosed with infantile spasms, was my friend Jody. Her daughter, Lueza had suffered a brain injury at birth and subsequently had severe cerebral palsy. Jody and I strolled the streets with our girls, our first children, sometimes crying, sometimes bitter and witty, and most always laughing. Not long after we moved to southern California, Jody and her husband with their two girls moved to the west coast as well, to northern California and through all these years, we have stayed in touch, visited one another and talked on the phone for hours.

Beautiful, joyful Lueza died this morning, suddenly, and we are all heartbroken.

Despite the unholy knowledge that Jody and many of us have, that we might possibly outlive our children, it is still shocking when it happens. Unbearable actually, at least in this moment.

I will miss Lueza, her smile, her light, and I am grateful to have known her and to know her beautiful parents. They gave her life and more life and so much love.