It's just impossible

Seizure days. ESES days. How do we get through them? Still, I have no idea. Still. Still! What would it look like to get through them? Is there some sort of chant for it, a manifestation? How does Buddhism work when your daughter has a bad seizure day?  It's just impossible, my friend Jody once said about her own situation, and I think about that often. It's just impossible. I think about Paloma and Calvin and Michael and Robert and Zaki and Charlotte and FlyBoy and Sophia and William and Emily and -- well -- all of them. It's impossible.

Listen. We had Dr. Bonni Goldstein on the Who Lives Like This?! podcast this week! She educates everyone about the endocannabinoid system and how cannabis medicine can right the balance for so many disorders. She talks about caregiving for caregivers, but her advice is really for anyone who wants to learn about how imbalances in the endocannabinoid system can manifest as disease or insomnia or anxiety or depression, etc. She has advice and suggestions. Check it out here. You can listen right from the blog post or from iTunes directly.

You don't need a weatherman to see which way the wind blows

10.  Practice corporeal politics. Power wants your body softening in your chair and your emotions dissipating on the screen. Get outside. Put your body in unfamiliar places with unfamiliar people. Make new friends and march with them.

Timothy Snyder, Professor of History at Yale University, from On Tyranny: Twenty Lessons from the Twentieth Century 

Disabled activists put their bodies into the fight and were literally dragged from the arena and told to shut up by those who work for them. Others who work for them did nothing, and I imagine that is because they were disruptive, shrill, out of control. 

The activists were called a sideshow.

What have you done to help disabled persons and the families of medically complex children fight for proper healthcare for everyone?

We are doing this for you, too.

Yes, it's a drag to have to beg, to applaud even those who waffle around about doing the right thing, but we're the sort of people that know fatigue and disappointment in ways that you might not imagine. We're stronger for it.

Help.

Make calls.

Put your body -- your healthy body -- into it.

Be shrill.

Be disruptive.

See the way the wind blows.

My Tango With The Dark Side

Sophie had a hideous day yesterday and suffered through multiple tonic clonic (grand mal to the uninitiated) seizures. I have no idea what caused the downturn, and so far today she is much better -- basically sleeping off the drugs. I gave her Diastat (rectal valium) and extra cannabis.

Last night I had some full moon thoughts, though, did some dancing with the dark side in the lead until I was bent backward, his hand bruising my hips, my hair and arm trailing the floor.

How much can a person take? They will do nothing but pump her up with drugs in the hospital and to what end? Why is there no one to turn to during these times, a professional that I can trust? When has there ever been a professional that I can trust? 

When released, I cried on the edge of the bed with my head in my hands because I'm sick of this shitty dance.

If the dance were a tango, imagine me quickly turning my head here, swiveling my hips and leading the dark side in another direction.

Sophie can take a lot. She will continue to take it until she can no longer. I have been traumatized over these past couple of decades for good reason and have a unique constitution that is repelled by the practice of traditional medicine. I do not want hospital intervention for my girl. 

I sat on Sophie's bed, brushed the hair from her forehead with my hand and murmured soothing words to her. I told her how much I loved her. I dissociated from the terror by acknowledging and then inviting it to stay. I called a friend and told her that I was afraid.

It's amazing how terror dissipates when it's acknowledged, when I don't push it away.

Yes, I am afraid that Sophie's small body won't be able to take these bad days. Yes, I am afraid that she will die.

Her small body may not take these bad days. She may die.






The thing is, her small body took that bad day. She is very much alive. Not because of my thoughts, of course, but because of the dance, her own dance, the one that I can really not control, even as I dance along, the one that I can only love.

Two Tigers

We're in our separate rooms. I'm lying on the bed, puny and pathetic, my cells distracted by some invader that's made me lurch when I get out of it. She's in her room, pacing in circles, bending gracefully over to pick up the toys she loves to mouth. Music wafts out and down the short hallway, sometimes eclipsed by her moans. She might be agitated. She might be vocalizing. I don't know. I tell myself that she's happy or at least content even as she's stimming away. I push away the thought that if I opened the door, she'd walk out and away. We're in our separate rooms, like tigers in cages. Her cage is purple and cream, lined with mermaids and music, swaying palms through glass, a padded door. Mine is my thoughts, the restless guilt, the never enough, the loneliness, the overwhelming fatigue, the whimper. I've told you about tigers before, way before there were tiger moms, way before when there was only Blake and what was burning bright. Here's that post from 2009.

I'm not Chinese. I've been leached, drained of my tiger-ness, like that old story about the little boy in the jungle, the tigers who spun so fast around the tree that they melted into butter that he put on his pancakes and devoured.

LARB, Heather McHugh, Jeneva Stone and Getting through a Saturday

Heather McHugh, Butchart Gardens, Victoria, Canada 2013

Imagination makes me large. The constraints of duty make me small.

Jeneva Stone

This morning, the telephone rang too early and the voice of my Saturday caregiver gave me the death knell words that she wouldn't be able to come in today to take care of Sophie. I confess to irritation. I confess to snapping. I confess to internal dramatics -- the I can't go on and I hate my life and This is only the beginning -- before I pulled myself together and got out of bed with a big, grandmotherly sigh (Pray that I die, my Italian grandmother used to mutter, while fingering her rosary beads. Pray that I die). When I later opened my email and saw that my friend, the great caregiver and writer Jeneva Burroughs Stone, had an essay published in the Los Angeles Review of Books, and that this essay was a tribute to Heather McHugh, the extraordinary poet who gifted me with my recent respite week in Victoria -- well -- I took it as a sign. While my literal week away in Canada, when I was taken care of with exquisite attention to detail  -- good food, beautiful nature, the ocean, cultural excursions, solitude, real rest and sleep, massage, baths, brilliant conversation, (the only thing lacking, sex) -- is receding, the memory of it is clear, and that clarity is a glass door that leads to possibility. Because of Heather and Caregifted, I now know that respite and the concomitant return to my self is possible, my self is indeed intact. That glass door might be closed to me today, and I might walk around fingering my rosary, pray that I die, but I can certainly look through it. I'm also going to make a peach pie.

Read Jeneva's essay here.