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.

How We Do It

When I feed Sophie oatmeal, I put one hand on her forehead and with the other coax a spoonful into her mouth. Then I put a finger on her chin and will her to keep her mouth closed and chew. Then I quickly scoop up the drool and any food that isn't chewed up and put it back in her mouth. I keep my hand on her forehead the whole time so that she doesn't drop her chin and let it all fall out. This routine is the same at lunch and dinner and I am patient on the outside, mostly, but dying on the inside. Her physical abilities are changed, too, but I don't feel like going into those here.

Do you want me honest or do you want me inventive?

I only have theories as to what's going on and actually don't welcome yours unless you've been helping me out for years or otherwise get it. I am taking the necessary steps to make sure that this is not the new normal. 

Yet, Sophie is incredibly alert and responsive and is having very few to no seizures and for that I am grateful.

I remember talking to my friend Erika years ago when she was struggling intensely with her daughter's cyclical vomiting and simultaneous seizures. Her daughter has a rare genetic defect that causes her countless issues, and Erika was in the full throes of it. I'm talking vomit and suctioning and seizures and more vomit and no sleep and no washing machine in the apartment to wash the soiled linens. No nursing, either, and a dear husband who had to get up early in the morning and go to work. It sounded, frankly, completely insane, yet she was living it and laughing with me over the insanity.

For a while, my friend Jody repeated this to herself and to me, "it's impossible," and I felt released from any burden I might be carrying.

I've walked into Sophie's room numerous times and found her seizing, sometimes safely on the bed and other times splayed in various positions on the floor. One time her head lay in a soft box filled with toys, another time she was on her knees, folded over on the mattress, her arms stiff, as if she were crucified. Honestly. Inventively, she was a prostrate supplicant, a postulant, perhaps (I was once a Catholic and was dutifully obsessed with these things). If you saw this stuff, you would, I imagine, cry or panic and certainly express that you couldn't do what I do. I suppose the rush of adrenaline gets you through, or maybe it's dissociation that comes, ironically, in like a flood. It's only occasionally that I think how not normal it all is, how fucked up. And the fuckery isn't just the seizures and suffering. It's the living it.

Do you want me honest or do you want me inventive?

Imagine a scene in a movie where someone has suffered heartbreak or someone has died, and the streets are filled with women in dark dresses, tearing out their hair as they walk down the street together, always together, and wail. They will eventually stop and eat together somewhere, certainly bread and maybe cheese. They'll brush one another's hair and lie curled up on beds with white sheets, their fingers trailing down backs lightly and laugh, always laugh.

It's NaFaCaMo, Folks!

I'm actually a day late to inaugurate the National Family Caregivers Month series of blog posts that I plan on writing in November. My friend and fellow Family Caregiver, Sandra, likes to call it NaFaCaMo as a sort of twisted take on NaNoWriMo, when writers the world over write a novel over the thirty days of November. There might be some NaNoWriMo folks out there who are also celebrating NaFaCaMo, but let's call a spade a spade and admit that if you are doing both (writing a novel and being a family caregiver) -- well -- we don't believe you. Despite the fact that President Obama wrote a very nice proclamation for this significant month (you can read it here), and I'm basically a sucker for everything that man does, including being recognized as a full-time caregiver of a disabled family member, my interest on the old blog is to tell it like it is and is means uniquely slanted (biased) toward the dark-humored, the rueful, the cut through the inspirational crap about being a full-time caregiver.

In the dark days of the last century when the internets were just a kernel of rice in the brain of Al Gore, my friend Jody, whom I had met in a mothers' support group at New York Hospital in that other big shitty, turned me on to a newsletter for mothers of children with significant disabilities. It was called MOH, or Mothers From Hell, and it was a perfect antidote to the treacly Mothers From Holland that was de rigueur at the time.  

Don't get me wrong. There are a myriad of blessings that come with being a full-time caregiver, and I've written literally hundreds if not thousands of posts here that testify to what I say is the honor of caring for someone who is entirely dependent on me.  I can tell you about resilience and virtue and strength and a community of human beings that are, without doubt,  the most courageous people on the planet. A designated NaFaCaMo calls for some levity, though, because -- well -- just because. I've just come out of a particularly grueling couple of months with Sophie in a sort of perpetual crisis that culminated in a fairly useless hospital stay that cost nearly $70,000 (so far, and I'm not joking). It took her approximately three weeks to recover from that stay and whatever was going on before she was admitted -- three weeks of barely being able to walk, of losing weight, of near-constant seizures in the early hours before dawn, among other atrocities. I'm thrilled to say here that she's turned a corner and is back in school with a spring in her step. It seems that the combination of increased Onfi and a new version of CBD and THC is doing something good, at least for now. I don't want to jinx it, though, so let's not dwell on this perhaps temporary hiatus other than to give thanks. Thanks!

It's taking me longer and longer to recover from these downturns, though, and can I tell you that it's not really Sophie -- or her disabilities -- that takes its toll. It's what we call the systems of care -- or lack thereof -- and the culture in general that makes our lives so difficult, when they're difficult. 

Hopefully, I can touch on some of these issues over the next month. I'd also love for you, dear Readers, and especially you dear Caregiver Readers, to tell me your stories. I want to know what your personal record is for changing wet bedsheets in the middle of the night or the greatest number of calls you've made to your insurance company about a particular charge. I'd love to know what outfits you've worn to IEPs (I myself wear a leotard and do a tightrope walking act) or your methods of dealing with constipation. How about doctors who refuse to acknowledge the efficacy of CBD or who downplay side effects of anticonvulsants? How about commercials for pharmaceuticals and making a case for medical necessity when you have to renew prescriptions at the drug store? What's the longest you've gone without a full night's sleep -- months? Days? Years? How about the siblings? How resilient are they? Did they learn how to buckle themselves into a five-point harness before they knew how to walk? How do you deal with the phrases of the well-intended -- the I don't know how you do its? the God knew what he was doing when He gave you [insert the name of your child], the God never gives you more than you can handle, or my personal favorite There's a reason for everything, and your daughter must be teaching you so much.

Let's hear about the marriages and the divorces -- hell, let's hear about the affairs. You spend a lot of time at home! There are no judgements here during NaFaCaMo! If you're a woman have you turned your home into a convent or cloister? 

And, here's the golden question that I know you've been asked at least two million times:

Are you TAKING CARE OF YOURSELF?

Where've You Been? and My Marijuana.com Link-A-Rama

Berkeley, CA

I flew up to the San Francisco area for the weekend and spent some wonderful time with one of my oldest and best friends, Jody. We sat in her kitchen for hours talking and laughing so hard that I now feel positively purged of any bitterness, fatigue, confusion, despair, encroaching old age, neuroticism,  dedicated overthinking, anxiety, sadness and melancholy. What we talked about is entirely private, but Reader: Laughter.

On Sunday night we met Sally and Lisa in Berkeley, ate a delightful dinner (my favorite mussels and fries, along with a cocktail made with bourbon and lemon and jalapeno) and then went to Zellerbach Hall to hear Billy Collins and Aimee Mann do a really interesting and unique performance of music and poetry. It was the first time that I'd ever been to Berkeley and quite thrilling. I've long held fantasies of going to school there and am a bit gobsmacked by its hippie history. I didn't really get a chance to see much of it, but I loved the name of that bookstore and my favorite site was a man sitting on the street, cross-legged with a MacBook on his lap that was plugged into the building behind him. His belongings appeared to be scattered around him, including clothes and toiletries and foil-covered food containers. I have no idea whether he was a student, homeless or just a Berkeley hippie of the twenty-first century.

What else?

The Virgin terminal at the San Francisco airport is exactly what I imagined the future to look like when I was a child. Really. Exactly.




This is my last week at Marijuana.com, so I'm tying things up and will have a new interview posted at some point. Below you'll see a list of the articles, features and interviews that I did while at Marijuana.com -- such a great opportunity while it lasted, and a somewhat devastating and certainly unexpected end. I don't feel free to discuss those details, but it's Big Business, ya'll. Marijuana is officially Big Business, and you know how many of us who frequent a moon, worn as if it had been a shell feel about that:

Better go down upon your marrow-bones   

And scrub a kitchen pavement, or break stones   

Like an old pauper, in all kinds of weather;   

For to articulate sweet sounds together 

Is to work harder than all these, and yet   

Be thought an idler by the noisy set 

Of bankers, schoolmasters, and clergymen   

The martyrs call the world.’ 

That's a bit of Adam's Curse by William Butler Yeats, the great Irish poet. It's one of my favorite poems and the reason for the blog's rather cumbersome title. Check it out here if you need diversion, but please come back and read the next line.





I am now officially LOOKING FOR A NEW JOB.

Did you hear that?

I am now officially LOOKING FOR A NEW JOB.

Are you Ten Thousands Minds On Fire? If you send me a lead, I will be of service to you in some significant way.


Cannabis Medicine and Autism: An Interview with Ana Maria Abba
How to Talk to Your Teenager About Marijuana: An Interview with Dr. Bonni Goldstein
Vaccination Injury, Seizures and Cannabis Medicine: An Interview with Georgia Smithson
The Literal Beating Heart
Keeping Monkey Neurons on Their Toes: An Interview with Allison Jackson
Purple Day
The Wisdom in the Room: A Cannabis Community for Women
Cannabis as Totem and Connector: An Interview with Allison Ray Benavides
A Passionate Mother's Reluctant Path to Lobbying
The Beginning - March 8, 1995
Making THCa At Home: An Interview with a Mother

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.

Moles and Beauty Marks

It's another Actor weekend, and last night's show was, once again, a blast. I told some friends that I'm having literal FUN when I do this show, and it might sound pathetic, but I can't remember the last time I had such a good time. Maybe it's because I'm hanging out with a bunch of women who I don't know and who don't know me -- it's a release of sorts. During the last six months, due to things unbloggable as well as the relentless grind of seizures, I've sort of morphed into my Italian grandmother who was known to walk around the house in her black house-dress with rolled-down support stockings, fingering her rosary beads and muttering pray that I die, pray that I die. I don't wear black all the time or stockings, and I sure don't finger rosary beads, but I've been on the edge of a constant whimper, if not a praying to die and I have the moles to prove it. With the show, I've lined up enough childcare to get away and have a glass of wine or my favorite beer each night with either the women in it or my beautiful friends who've come to support me. Last night, I sat in the car with my friend Jody for nearly an hour after the show talking and laughing about nearly everything under the sun, suffused with the warmth and horror of our shared experiences. Today I'll be running around with The Athletes (my sons), but later on I'll dress in my black shirt and pants, put on more makeup and drive to Burbank where I'll meet some friends for wine and dinner before getting back out on the stage and doing my reading. I do believe I've been replenished doing this performance, so perhaps on Monday, when it's all over, I'll stop whimpering and shout How lucky am I? And when I pluck the errant hair from my mole, I'll just be thankful that I have so many beauty marks.

I swear to you, there are divine things more beautiful than words can tell.

Walt Whitman

A long time ago

My friend Jody sent me this photo. It was taken in New York City, a million years ago. I'm glad she sent it, because when I picked Sophie up from the grass in my front yard last night when her one millionth seizure had subsided, I was hard put to feel much joy. The photo made me remember that there's probably more joy than not to remember.

Thank you, dear Jody. I love you very much.

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.