Rambling on Venice Blvd.

Venice Blvd

I drove out to Santa Monica this afternoon for my annual mammogram. I had gotten a babysitter for Sophie and turned down some plans to meet with a friend for this appointment. I wanted to get it over with, particularly since very recently one of my best friends got diagnosed with breast cancer from a routine mammogram. I know five people who've recently been diagnosed with breast cancer, and at this point, we all know that lightning can strike twice, that bad things happen to even the beleaguered or women like me who have, already, a lot on their plate. Sometimes, I imagine what I'd do if I got a cancer diagnosis, and I can't come up with anything more than well, of course I do, and that's not to evoke pity or even because I'm pessimistic. I think I've just learned to expect that things can go wrong or crazy, in the snap of a finger. Anyway. I hit a bunch of traffic traveling -- it's summer, and so dang beautiful outside. I imagined all the cars were going to the beach. The imaging clinic has free valet parking. I've always been struck by the meticulous care women's clinics take for their patients. It's in stark contrast to the various neurology clinics, even pediatric ones, that I've frequented over the last two decades, where it's like one horror show over the next. I checked into the office, updated my personal history and sat in a chair to wait. A woman in scrubs came out with a clipboard in her hand and called my name. She sat down next to me and told me that the mammogram machine was down, that she was sorry but that I'd have to reschedule. I almost didn't understand what she was saying and might have said What? and then listened when she told me The mammogram machine is down and you'll have to reschedule. There's not much you can do, is there, but sigh and walk up to the receptionist and reschedule your mammogram. Do mammogram machines really go down? Is there only one mammogram machine at this very prestigious imaging clinic? The thought crossed my mind, later, when I was sitting in the godawful west to east traffic that it wouldn't surprise me if a celebrity in need of a mammogram had come in some back way and they'd closed the place down for her. Musing at a standstill in my car on Venice Blvd, the route I'd chosen over the freeway, I told myself that if that thought just sprang into my mind in that moment, apropos of nothing, it must be true. That sort of thing happens in this city, and I'm one of those people that believes if you can conceive of a soul, there must be one. Does that make sense or does it just sound crazy? It's sort of like a psychic hit -- the kind of thought you have like a bolt of lightning, completely irrelevant to the situation at hand. I have them periodically -- you know, when I suddenly know that the guy behind the counter handing me my prints at the photo shop is a pedophile, or the woman standing at my window in the carpool line is going to tell me that she's pregnant. I probably do sound crazy. I sat in traffic on Venice Boulevard at a near-standstill for a really long time, thinking about these things. I also looked out my window and tracked a woman in a blue-spangled robe and head covering. I wondered whether she was Muslim or a nun. There were the sequins, though. She walked faster than my car moved, and at one perfect second, when the car next to me moved forward and a space opened up, I took her picture. She was on her way home, had some flatbread in her bag, would tear a piece off and eat it once she got inside, wait for her son to call. At least I think so, but I'm pretty sure.

Thoughts and Actions After Leaving Your Heart at LAX

1. Thought: Does my life have a purpose outside of the beautiful boys and girl that I've brought into the world, the children who order my days and nights?
2. Thought: What will I do if a missile hits their plane, and it goes down? Will I become a vengeful, crazy woman intent on destruction? Will I be a domestic jihadist, maybe even a conservative? I know this sounds insane, but I'm nothing if not honest. Notice that the above photo is a selfie when the boys landed in Atlanta, so you can disregard any thought of your yellow dog becoming a member of the armed forces. You can tell they were thrilled when I placed my order via text.
3. Action: Try the new bakery on the way home and around the corner from the empty house. Order an incredible croissant with roasted tomato, bacon and Gruyere and some coffee for there and a Paris-Brest to take home. Sit down at a long table and pour coffee into beautiful mug from a silver carafe. Drink coffee, eat croissant, page through an actual copy of The New York Times, which feels good in the hands but is so filled with horror that you must push it aside. Gaze at the to-go box with Paris-Brest inside. 
   
4. Action: Decide that it can't wait and eat Paris-Brest -- all of it.
5. Thought: Know that some friends would call this taking care of yourself and others' emotional eating. As you lick the insides of the box, where the hazelnut cream is smeared, think I don't give a damn about anything in this moment.
6. Action: Get home and wander aimlessly about the quiet house, waiting for Sophie to get home from a bike ride with her father. Straighten up boys' room, make beds lovingly, still mournful of their inhabitants' absence. Notice, suddenly, that elder son's clear retainer is lying in the folds of the navy bean-bag chair. 
7. Thought: I wonder if he's been wearing this thing at all over the last month or so? What the hell? Where is the case? Those $5,000 teeth are probably getting crooked as we speak. Decide to have a few words with the kid as soon as he lands.
8. Action: Work for a couple of hours on the project that my friend M gave me. I am so grateful for this work, and it's something so worthy that the work is a pleasure.
9. Action: Make barbecue chicken for a friend in the hospital using the broiler in my 1928 oven for the first time. 
10. Thought: Who knew the broiler worked and was so great? I've raised three children and never made barbecue chicken with the broiler. What the hey?
11. Thought: Are we as a culture evolving into persons who will all have breast cancer and autism? It seems that way as five people I know have recently been diagnosed, and I know countless children with autism.
12. Thought: I don't make a big deal about the womanly cycles, menstruation, or The Change, but really -- I'm nearly 51, and there don't seem to be signs of it, and I definitely don't need to have any more children, and -- let's face it -- buying feminine hygiene products for 38 years is a drag.
13. Action: Take Sophie for a long walk to fend off the blues which are associated, I guess, with the two boys being gone and #12 above.
14. Action: Send the elder son a text about the left-behind retainers that were found in the folds of the bean-bag chair.

Reader, tell me what sort of thoughts and actions you're having and doing today.

Sophie and Me in Blue

When I was a small Catholic girl like most small Catholic girls I was enamored of the saints. I knelt in church (and sat and stood and sat and kneeled and stood and sat and kneeled) and stood and saw spots or tiny lights and then I'd blink, sweat would bead, roll down the nape of my neck, the priest's voice a drone, I think I'm going to faint, I'd think and blink, my hands smooth and brown on the pew in front of me. Helen who carried the cross will be my name, I said when I was twelve. Twelve! I'd kneel then and think of the saints. Yesterday afternoon, I was drifting, I was angry, I was drifting and angry about the day, the day after the show about weed and seizures, the day that began, again, with seizures. I was angry about my cousin, my age, dying of cancer far away, a cousin who I loved in my childhood, who loved to read like me, who wrote me letters sealed with a kiss. Her name is Maria. I drove my car to the bank in the little village just down from the church where I used to go (to stand, to kneel, to sit, to stand, to kneel) and I was angry when I got out of the car and walked, a beautiful day, it's always, always a beautiful day, and four beautiful people sat in front of a restaurant and spoke what was that? Italian? Yes, Italian. Italian rolling off their tongues like saints. Jesus Christ, I thought, this town is impossible. I walked into the bank and then out and the Italians were getting up from their table and walking, walking in front of me, two women and two men, all beautiful, the Italian still rolling off their tongues like saints, one woman had a band of smooth brown skin, naked above her ass, and I was still drifting, angry, when I got into my car and drove back home. At a stoplight, I looked over into the car next to me, a woman in full Muslim garb, her head covered, sat at the wheel, her daughter in the back seat covered as well. The light was still red and I was still angry, and the daughter was young but not young enough to sit in a booster seat. She looked ridiculous in the booster seat, stupid in her veil. Take off your bullshit cloak of modesty, I might have hissed, your daughter is too big for that car seat. The light turned green, I looked away, I drove away. When I got home I sat with Sophie, I stood with Sophie, I stood and sat and kneeled. I blinked, a bead of sweat rolled down the nape of my neck and down my back, I was wearing a blue dress. I am not a saint.

Two Things and Final Call

Federico Fellini directing a film

I've got two things for you this morning:

First, please send me your photos of yourself for my Video Project. Please send them to me as soon as possible as I'd like to put the video together by the middle of next week. Here are the instructions or you can click on the link above:

1. Write down on a piece of white paper or poster-board advice that you would give to yourself, that long ago self, when your child was diagnosed.
2. Have someone take a picture of you holding the poster
3. Email me the picture at elsophie AT gmail DOT com
4. If you want to send more than one, feel free. I'll use them all.
5. Spread the word to your friends. MEN, please participate!
6. I'm setting a goal of finishing this by May 15th, so please help me and send yours in (if you haven't already!) as soon as possible.

Second, have you seen this beautiful video? Set aside your distractions, turn up the volume and be happy:

The Best Giveaway Ever

Last night, I finished reading Because of Katie: A True Story by Karen Gerstenberger, a woman who I am proud to call friend and grateful to call a deep inspiration and source of wisdom, spiritual advice and compassion. Karen's daughter Katie and my daughter Sophie share the exact same birthday (March 8, 1995), so I've always felt a kinship with her. I literally began to read the book when I ripped it out of its wrapping, standing at the dining room table. I continued to read it through the late afternoon, lying in Sophie's room when she came home from school, even holding it as I cooked dinner. After the children were in bed and I'd finished catching up on email and blogs last night, I finished the book in bed, around 11:00 and quickly got up to send an email to Karen, thanking her for sharing her story with the world.

The book is an honest and quite searing account of the journey Karen's family took when their eleven year old daughter, beautiful Katie, was diagnosed with a particularly gruesome and rare form of cancer. The writing is gripping, harrowing at parts, but always informed by Karen's grace and honesty and courage. I believe it to be not just an important personal story, a courageous and honest portrayal of what happens to a tight-knit family as they cope with a grueling treatment plan, but also an important primer for people in the healthcare profession. There is little to no anger in this book -- only the right raging of a mother whose child is dying -- but Karen is generous in pointing out how "the system" worked and how it didn't. As a person who has worked quite extensively in the "quality improvement" area of children with special healthcare needs, I know that this book should be shared with all medical students, doctors and people involved in the care of children who are sick or disabled, and I hope it will be.

From a personal standpoint, although my own experience caring for Sophie for the last seventeen years is quite different than Karen's for Katie, I found renewed strength and inspiration reading Karen's account. I think her descriptions of her family's, particularly her own, growing and intense intimacy with Katie as her treatment progressed and then later when they knew she was going to die, resonated with me the most. I realized that my own family has a startling intimacy with Sophie, and while it might be overwhelming at times, it is, essentially, a gift.

Thank you, Karen, again, for sharing your story with the world, and I hope that everyone has a chance to read this beautiful book.

To begin to make that happen, I am thrilled to offer TWO autographed copies of Because of Katie to two of my readers. Please leave a comment here to enter the giveaway -- perhaps a word of support for Karen or for those who might need support in their own journeys caring for a sick or disabled son or daughter. I will announce the winners on Monday, February 20th.

THE WINNER OF THE GIVEAWAY IS: Taylor's Healing Arts. Please send me your email address ASAP!


I FORGOT! THE SECOND WINNER OF THE GIVEAWAY IS: se (Please send me your email address ASAP!