White Sheets

Sophalette Silhouette
May 2018
Los Angeles

to Allison, Heather, Christy and Bonni

This morning I lay on my back in my bed barely woke, my son rummaging around the bathroom on his way to work out and then the sound of Sophie seizing from her room and his bark Sophie's having a seizure! even as he walks out the door (the quotidian) and my sigh and hobbled walk (I'm working out, still) down the hall at no great speed because I've done this before and again and again. That I was lying on my back thinking about seizures and Sophie and what to do next and how very tired and sick unto is irrelevant, redundant, mundane and tedious. I settled my girl and climbed back into bed with my thoughts, my incessant thoughts, what to do, how to do, a kind of solipsistic world except that it's not me my mind but, literally, Sophie, her mind. Or brain. Or not -- the solipsism, that is. Then the world broke through. I had conversations right then and there, as we do in the world's mind, that vast space that some call unconnected but we know better, conversations with a friend in Maine and a friend in Colorado, both of whom struggle with their sons' seizures, both of whom know everything there is to know about cannabis in addition to seizures, both of whom fiddle and adjust, grow and learn as they go, as we go. The world broke through the way it does (the universe is abundant) in the form of these women and another who spoke to me from Greece, and another from San Diego who was the last person I spoke with the night before and who figures in my dreams. In the moment of the morning, flat on my back in the bed, post-ictal, I willed myself toward signs, out of the pull of darkness and toward light and lightness, acknowledged in my mind the miracle of these connections, our wisdom, these women. I made my bed. I lie down in it. We lie on our backs in these beds, this bed, next to one another, I feel them there, white sheets, these women, and we are connected and everything is ok. It's going to be okay.

Benignity and Trickery

I'm going to tell you about what might happen to siblings of kids with complex medical needs. No matter how conscious you are about giving them equal time, things slip through the cracks, stuff is blown off, "little stuff" is overlooked. Oliver complained about pain in his finger for a year. I acknowledged it, but I also blew it off. I blamed it on diet or inflammation. You need to stop eating junk, I might have said. How bad could it be? Both Oliver and his brother Henry are strong in every way. They are strong and sensitive. They are honest and funny as hell. Like their sister, except they haven't gotten as much attention. It turned out that Oliver has an aneurysmal bone cyst. Benign but tricky. Today he had a second surgery to remove it as the one in December didn't work. The tumor came back, began eating into his bone. Hopefully, today's intervention will last. I sat by the bedside in the recovery room for hours, running my hand through his hair, watching my nearly grown boy sleep off the drugs they gave him. He made jokes in his sleep, smoothed all my rough edges worn thin by time in hospitals those weird hours ticking by. Precious child. Brave children.

I'll be catching shit for the "inflammation" and "too much sugar" talk -- but that's okay. We all need to be humbled and set straight.

Power to the siblings.

Shedding Tears

I've decided to be fully present during each seizure and shed tears, at least afterward. The word shed.  Dutch and Germanic, Old English root: to separate out, to scatter, to divide. I remember watching a scene in a movie -- maybe Zorba the Greek -- where a bunch of women are wailing in the streets about something or another. I can't find the scene, though, so I might have made it up or perhaps reached into my cellular wellspring where the Middle Eastern and southern Italian histrionics lie embedded. The word histrionic. The dictionary states that its origin is the 17th century, and I imagine some Germanic guy or Anglo-Saxon with the whitest of skin took the Latin root for drama and acting, twisted it into something unfavorable, applied it to women, in particular.

I have a friend whose adult son is schizophrenic. She's done things like cleaned his shit from the walls of his apartment. She and I recently sat in a car outside her house and discussed how we imagined ourselves screaming in the streets with other mothers, other women. Tearing at our hair and wailing, rending our garments.

How fitting to shed --  to empty oneself that way.

Watching a person twist and jerk and grimace over and over, in minutes and then years, helpless to do anything but watch and abide in the moment -- surely this calls for tears afterward as much as efficiency or quiet?

Are there enough tears?

There's nothing to be thankful for with seizures.

I don't believe in prayer and would as soon as stand on a pew and wail then beg.

There's gratitude, though, in tears.

I bought some daffodils the other day. The buds were tight, the stalks like paper. I stuck them in water and watched them unfold into yellow.

The Full Catastrophe

Learning Not to Swear (Do I Really Sound Like This?)

Hey ya'll! This really cool guy, Ted Lyde, asked me to come and have a conversation with him. This morning we talked for over an hour about all sorts of things.

You can listen to it at this link.

Secular Sunday

Huntington Beach, CA

Prayer During a Time My Son is Having Seizures

Finally I just leaned on the door-frame, a

woman without belief, praying

please don't let anything happen to him.

Don't let him stand there and his gold

jaw lock while he watches the burning

mountain falling slowly through his mind and

no word comes to him.

Don't let him stand there like a tree with its

green branch lopped off and

falling slowly away, the tiny

amber cones already darkening,

don't let him fall like the lip of a 

cliff coming off, a heavy tuft

stuck with white berry blossoms

sliding down the raw bluff of his life,

don't let him stand on the curb watching his

mind get hit by a blue car

over and over, there is nothing he can do about it.

Don't hurt him, I cry out,

don't take his thoughts away as a 

kid will rip toys from another kids' hands,

don't go up to his small dazzling

brain in spangles on the high wire

and push it off. There is no net.

Don't leave him in a wheelchair drooling into

cereal, not knowing the dark

holes are raisins. And yet if that's the

only way I can have him, I want to

have him, to look deep into his face and

see just the avenues of light,

empty and spacious, to put on his bib

as I once did, and spoon brown sugar

into the river of his life.

I'll change his dark radiant diapers, I'll

scrape the blue mold that collects in the creases of his elbows,

I will sit with him in his room for the rest of my days,

I will have him on any terms.

Sharon Olds

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.

How to Figure Out What's Wrong With Your Non-Verbal Child 233***

***This is an advanced class, designated 233 for the number of months said child has been non-verbal. If you have not advanced through How to Figure Out What's Wrong with Your Non-Verbal Child 1- 36, you may not find this class relevant to your life. You can read on for random stimulation but might find the contents upsetting or completely boring. In any case, the above photo is from the other day, during a brief respite from shallow, heaving breathing.

1. Take note of extreme number of seizures on one particular day, but figure it's the lower ratio CBD oil or the moon.
2. Wonder if the extreme number of seizures is actually a portent of an earthquake.
3. Take note of earthquake happening in home state but dismiss as reason given how far away earthquake is from home city.
4. Ponder why child is breathing shallow and hard, constantly.
5. Ask oneself: Is she breathing like this because she is having an asthma attack? Place head on chest and try to discern wheezing. Is she breathing like this because she is now more alert and thinks it's fun? Tell her to stop it right now because the breathing thing is driving everyone insane. Is she breathing like this as a sort of seizure? Observe that after getting higher ratio CBD, the seizures actually stop yet the breathing continues. Notice that she's particularly alert and happy and is once again having no seizures. Is the breathing self-stimulating? Decide that there's no way to tell.
6. Ponder why child is reluctant to drink anything. Force child to drink by dripping liquid into her mouth.
7. Obsess about hydration and constipation.
8. Start worrying about having to call The Doctor.
9. Tell oneself that every time you take her to the doctor, it costs hundreds of dollars, and it's probably a virus. 
10. Last night, during a coughing fit, observe the child to really be struggling to breathe and coughing up some pale yellowy mucous. Observe that she is very agitated and uncomfortable.
11. Worry that she might have aspirated something or have pneumonia. Think about the interaction of CBD and Onfi and wonder if it's all going to kill her.
12. Calm down when she calms down after you apply some Baby Vick's Lavender Vapo-Rub, but call the doctor anyway and make an appointment to take her in the morning.
13. Take the child in to the doctor and try to answer all the pertinent questions despite not being able to really tell the doctor what, exactly, the child feels. Be reminded that the last time the child was on an antibiotic, she was less than three years old when speech was still a viable hope.
14. Help hold the child down so that nurse can get a throat culture to check for strep. Nurse, doctor and you talk in calm and determined voices as you hold the child down on the floor and dodge her flailing legs and arms.
15. Stand up with child, look her in the eyes and firmly tell her to calm down, everything is all right. 
16. Cry a few tears when she throws her head into the tiny Buddha necklace that digs into your clavicle in just the right spot to cause obliterating momentary pain.
17. Feel grateful for the physical pain that can mask the emotional pain of the whole freaking situation.
18. Repeat above steps so that doctor can listen to lungs, heart and get a pulse oximeter reading.
19. Try to explain to doctor what you think might be the problem, and because doctor is so wonderful and states that since she never sees Sophie because she's always so healthy, she agrees and orders an x-ray of her lungs to check for aspiration and/or pneumonia.
20. Feel relieved and grateful that the quick strep test is negative but listen with sorrow to the doctor explain that her throat looks pus- y and that we shouldn't rule out strep until the culture is fully grown. 
21. Feel extra sorrow because this is why she hasn't been drinking. Her throat is sore, and she's unable to tell you.
22. Drive to x-ray place and curse oneself, silently, for not bringing the wheelchair. Apologize out loud to child who is sitting in back seat, less agitated but still breathing heavily.
23. Fill out forms in x-ray office with one leg over child because she won't stay still and you can't tell her to do so.
24. Go into the back of the office, don a lead apron and help the technician to hold the child while another technician operates the machine. 
25. Keep talking to extremely agitated child who doesn't understand what's going on, other than that she's wearing a heavy lead skirt, is being asked to raise her arms and stand in one place without moving.
26. Cry a bit inside.
27. Feel grateful when technician is finished, they get clear x-rays and she helps you to dress Sophie.
28. Feel tearful when the technician kneels down and puts Sophie's shoe on her foot.
29. Feel momentarily irritated when technician says God only gives you what you can handle! like you've never heard that statement before and actually might welcome it, but realize just as quickly that she is a goddess of a technician and who cares what bullshit she says so kindly?
30. Receive the news that the lungs are clear and feel nearly orgasmic with relief.
31. Walk back to the car and feel nearly tearful with gratitude for the valet dude who helps you to put the child in the car.
32. Drive home wondering if you'll figure out what the hell is wrong with child, knowing that she probably just has a virus.

The day after the day I rested

I dragged myself out to Pasadena this morning and began the proceedings to formally divest Sophie of her rights as a self-determined individual and become her guardian. I am, evidently, a "self-represented litigant" in this process and had the great fortune to be referred to a wonderful organization that will help me along the way. I filled out the beginning paperwork this morning while coughing discreetly into my upper arm and felt almost grateful for not feeling fully up to snuff. Had I been my usual feisty and iconoclastic self, I might have had reason to see irony in every sign that crossed my path and every box that I checked. Should I check YES or NO as answer to the question Does conservatee wander and get lost? Or how about Is conservatee confused and forgetful? We won't even get into Is conservatee able to make decisions about his or her sexuality? I thought for a split second about the women in North Dakota and Mississippi, and how their rights to reproductive freedom are not just being chipped away but, rather, hacked at the roots, while an hours old embryo is perhaps going to be considered a person there. Way to go Mississippi and North Dakota -- so very advanced of you. Such is the way my mind generally wanders and it might have been for more than a second if I hadn't felt so run-down from this dang virus. In any case, I finished my appointment and then drove back home where I walked around in circles in my house for a few minutes and even attempted to reach Medi-Cal for direction regarding Sophie's Drug Acquirement Troubles. If you can believe it, when your identification number has a LETTER in the string of numbers, instead of just pressing the corresponding number on the phone you have to do this convoluted thing where you press STAR and then the corresponding number and then STAR again and then a number that says which number the LETTER comes on that button. I'm not kidding you. That's what the lovely Medi-Cal voice tells you to do, and you know what? I couldn't figure it out. I started to cry a little and then giggle a little and then I realized that I need to get back into bed and watch some more episodes of House of Cards. So that's what I'm doing.

To my Expressing Motherhood friends

Last night was the last show of Expressing Motherhood, and while I'd grown a bit tired of my own story, I was sad to say good-bye to this beautiful group of women whose stories entertained and moved me so much over the past two weeks. I sat with many of them, none of whom I knew before this experience, and shared intimate stories of my life and theirs, a profound experience of community and commonality. Most of the other mothers were younger than I, some much younger with very young kids, and I was struck by how many of them professed anxiety about their children, about their worry for each of their futures. It made me reflect on my own experience raising Sophie, how consumed by worry I was when she was born and diagnosed and treated over the years, yet how that worry and anxiety finally succumbed, for the most part, to a sort of acceptance and resignation only tinged with true terror every now and then. As for Henry and Oliver, I don't remember ever being really worried about them beyond the trivial and certainly not in the way some of my fellow performers professed. I couldn't pinpoint how or when this happened, how suffering and anxiety and worry transform through surrender, and I wouldn't pretend to dole out advice on how to achieve this equanimity (after all, it was sort of imposed on me), but I thought of Pema Chodron's words:

Whether we’re seeking inner peace or global peace or a combination of the two, the way to experience it is to build on the foundation of unconditional openness to all that arises. Peace isn’t an experience free of challenges, free of rough and smooth—it’s an experience that’s expansive enough to include all that arises without feeling threatened.

 I remembered that I had written about this before and thought I'd re-post it here, as a sort of homage to my new mother friends. Thank you, ladies for a wonderful two weekends, for the laughs and the ease and for being so brave to share your experiences both on and off the stage.

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.

The Extreme Parenting Video Project

Here it is! Finally, here it is!

I've got nothing to say but thank you. Thank you to those beautiful people who sent me their photos. Thank you for always supporting one another. Thank you for helping me to feel deep gratitude for this path that we share. And thank you to Phil Konya for putting the slides together and adding the music.

Now, please watch and be struck by so many beautiful, soulful eyes -- it's the eyes, here, true windows to the soul.

And please share the video, particularly with those who might have just stepped on the path. Let me know if you have any ideas on whom to send it, where to send it, etc.