Tuesday, May 3, 2016

After a Big Seizure and Before Dressing



There's something about pulling a sock over Sophie's slender foot that brings tears. It's a tug at the heart, at the eyes, at the arch in her foot that resists. I'll jerk it over some days, frustrated. Help me out, I'll say. Sometimes, goddamnit. I'll gently work it over on other days, a whimper in my throat.

It's difficult to defend the integrity of another person who can't do it for herself. It wears on the soul. The wearing, though, is like clothes. A garment to mask vulnerability. The wearing is from the outside, not her. It's from you. We shouldn't have to defend or even wear the clothes.

To be naked is to be true.

You would know this if you did this. Pulled socks over feet.

(But what does she actually do? She doesn't really learn, does she? I think I'd rather not be alive. I don't want to be a burden to my children. We aborted the baby because of the defect.)

All life while alive has value and the value is not something measured. There's no counterweight to balance.

I can whimper, shed tears, be impatient. I can also feel honored. All of it. Honor in the doing.

Do you get that?

Monday, May 2, 2016

During my absence here on the old blog,




my parents were present for four days. We had a lovely time, catching up, visiting LACMA, the beach and just hanging out.  I had probably one of my top five star sightings at LACMA where we visited the Robert Mapplethorpe and Reigning Men exhibits. Look who was walking out of the Mapplethorpe:



I locked eyes with her and then proceeded to get all fluttery and goofy. She walked away, and I begged Oliver to give chase and take a photo. He came back with the proof. I then had to sit on a bench and explain to my parents who she was, what she did, why I was acting so goofy. It's Patti Smith, ya'll, looking exactly like Patti Smith.

I don't know where to start as far as catching up. At risk of too much shameless self-promotion, here's an interview I did with Amy Silverman on her wonderful blog Girl in a Party Hat. Amy is the writer who I am meeting with (or with whom I am meeting) to "engage in conversation" this Friday night at our local independent bookstore. She's written a wonderful memoir titled My Heart Can't Even Believe It. She's so generous to have promoted me on her blog by asking me some questions about blogging and my own writing.

Speaking of. My own writing. Lordy lord. I have got to get going doing it. I'm in a distracted slump. I've got short story ideas piling up and the manuscript that I worked on over the summer on my Hedgebrook residency is languishing, to say the least. The thing is I am distracted. Some of the distraction is heavenly and some is just plain laziness. My job at Marijuana.com has come to a grinding halt, too, so I really, really need to drum up some bizness. If you can think of anything, let me know.

Here are some photos that I took over the weekend. I'll be back with more words soon.















Thursday, April 28, 2016

Heads Up for a Conversation Between Amy Silverman and Me




We'll be talking about writing, parenting our Sophies (yes, they're both named Sophie!) and most importantly of all, promoting Amy's wonderful memoir:

My Heart Can't Even Believe It


If you're in the neighborhood, come on out to hear us. If you live elsewhere, buy the book at your independent bookseller or order from Amazon!

Tuesday, April 26, 2016

I'm in the mood for




Elizabeth Bishop*:


Sonnet
I am in need of music that would flow
Over my fretful, feeling fingertips,
Over my bitter-tainted, trembling lips,
With melody, deep, clear, and liquid-slow.
Oh, for the healing swaying, old and low,
Of some song sung to rest the tired dead,
A song to fall like water on my head,
And over quivering limbs, dream flushed to glow!
There is a magic made by melody:
A spell of rest, and quiet breath, and cool
Heart, that sinks through fading colors deep
To the subaqueous stillness of the sea,
And floats forever in a moon-green pool,
Held in the arms of rhythm and of sleep.






*Thank you, Verna!

Monday, April 25, 2016

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

Friday, April 22, 2016

How We Do It, Part LIX in a series


We live on a markedly diverse street with people of all races, nationalities, religious and sexual identities. African American, Caucasian, Korean, Philippino, Chinese, Orthodox Jew, mixed race, mermaid. Until this morning I have wondered whether we ever really see one another.

"I admire your courage, dedication and great love, " my neighbor said as I walked across the lawn, lifted Sophie into the car and twisted my head toward him to avoid her head banging mine. I had already loaded the wheelchair, bashed my head once. My tail of years glinted in the sun blue green. Swish.

The sea. To see.


He was in his pajama pants, an older African-American man walking his very old and very slow dog. He has chastised me in the past for not keeping my own on a leash. I see him daily. 

"Thank you, " I said.




That's really all it takes, good people, to see us through.

Wednesday, April 20, 2016

Berries in a Bowl and a Report From the Final IEP



I know I'm supposed to be grateful for drugs, but I'm not. Berries in a bowl are beautiful. When I open a new bottle of Onfi, the smell assails me. Milky. Sweet. Touch your finger to it and lick it. Acrid. Poison. When Sophie was a baby, I gave her the drugs and never felt grateful. I felt like I was giving her poison. I never could get out of my head giving drugs. Even today, when I pushed the syringe adaptor into the top of the new bottle, I wanted to gag at the smell. I didn't feel grateful.

Which has been said more?

1. Berries in a bowl are beautiful.

or

2. Drugs are poison.






Speaking of drugs, please visit and give some love to my article on Marijuana.com. I'm only going to be working there for another week or so (will explain when my contract is officially over) and would appreciate your enthusiastic response to it, if you're so inclined. It'd be like berries in my bowl.


Thank you to those asking how the Final IEP went. It went -- well -- finally. The "well" is an aside and not an adjective. An Assistive Technology person showed up for the first time ever and acted surprised that no one ever had before. When she said something about a box being checked off properly, I came down from the wire where I'd been doing my thing up in the air so high, ducked my head under the table and took a swig of my Bloody Mary. I leaped back up and did a little twirl. The OT said that Sophie didn't really need services but that she would continue to come in for a 30 minute consult once a month. I did a pirouette, a graceful dismount and took another swig of the Bloody Mary. I might have told her that The System had failed my daughter before jumping off the table into a handstand on the wire. The PT was a woman but spoke like a mansplainer. I learned about Sophie's need for weight-bearing and exercise. Despite a particularly excellent somersault off of the tightrope, I took two swigs of the Bloody Mary when she described a new bathroom contraption that she'd ordered only after I'd objected earlier in the year to the discovery that Sophie's aides were changing her diaper while Sophie stood up because there was no changing table in the bathroom. The P.E. teacher expressed satisfaction that The District had finally responded to her request to not give Sophie an F in P.E. because of scheduling difficulties. When I offered her a swig from the flask, she declined but said that when she's retired in two years, she'd meet me out for a drink. We all ate donuts, and when it was finished, I took a bow.

Monday, April 18, 2016

Unlace Yourself


to C

Who else out there lives in a house where just as the teakettle lets out its maniacal scream, the mistress is backing her car out of the driveway so one of the princes can depart for adventure, and the princess stirs in her sleep, perhaps seizing and prompting the other prince to wake and shout, "What is going on?"

What is going on?

Think renaissance. Think elegy. Think nineteen and ministers who write poetry.

Today is April 18, 2016 and I am off to my eighteenth and final annual Individualized Educational Plan meeting. I am contemplating a mimosa or Bloody Mary in a flask but will probably only bring donuts and a bit of extra resin so as to impress the crowd below with my dogged prowess. Teakettle, seizures, a drab table, a box of donuts, an array of pawns. Eighteen times.



Off with that girdle, like heaven's zone glistering,
But a far fairer world encompassing.

from John Donne's Elegy XIX: To His Mistress Going to Bed

Tuesday, April 12, 2016

Dazed and Enraged



A friend forwarded an article from the Wall Street Journal today about the Israeli chemist, Dr. Mechoulam, who is considered the pioneer researcher in the field of cannabis medicine. I scanned the article because I know all about him and his work, but just before I was going to click off of it, I read this:

And we found that those 7 or 8 patients that were getting the [cannabidiol], 4 out of them had no epileptic attacks for three or four months and three others had much less and only one was not affected at all. By contrast those that did not get cannabidiol continued their attacks. We published that and I thought something would happen. But nothing happened for 30 years, and I was kind of disappointed… [There is now an ongoing] major clinical study with cannabidiol in epilepsy. It’s a shame really that one had to wait for 30 years when these facts were in the literature.
The operative words here are, obviously:

It's a shame really that one had to wait for 30 years when these facts were in the literature.


I'm not going to mince my words. If I had a dollar for every time I've either read or heard from the lips of countless doctors and researchers and politicians and all manner of human beings that constitute The Powers That Be the words WE NEED MORE RESEARCH  -- well, I'd be a millionaire.

We need more research is smoke and mirrors with money behind it.

When Sophie's seizures improved dramatically after giving her cannabis, there was a tiny part of me that wanted to kill myself for the regret. I'm a person who practices mindfulness, who believes for the most part that things happen in the right time, and I was able to allow that tiny thought to sit there but not overcome my larger joy. Since that time I've spoken at numerous events and told my story here, to consortiums of epilepsy professionals, to neurologists and Epilepsy Foundation board members. I've shared the stories of others in the epilepsy/cannabis world through my work and on this blog. I've been applauded and thanked, but my tiny little mother mind™ has also been openly mocked and dismissed.

We need more research is smoke and mirrors with money behind it.

I am upset and angry that I might have had this treatment for Sophie when her brain was more salvageable, when her life, my own life and that of her father and brothers had not been so irrevocably changed by the experiencing and witnessing of tens of thousands of seizures every single day for nineteen years.

Yeah, I know there are some of you out there who visit this blog and bemoan my anger, and I should probably not document any of it in real time, but sometimes it's the first step toward peace.

Regret, Anger, Peace.

Peace.


Sunday, April 10, 2016

Book-struck






I'm having a hard time writing about Sunday. Getting the long hollow feeling of Sundays. No mail and faraway lawn mowers, the hopelessness.

from Lucia Berlin's short story "Point of View" in A Manual for Cleaning Women: Selected Stories



Have you read these short stories? I have been making my way steadily through them -- so clear, precise and weird. Here's another favorite line:

I've never understood how so many barely literate people read the Bible so much. It's hard. 


My Sunday has actually been relaxing, a kind of pajama reading in bed and hanging out day. Two girlfriends came over, and I told them everything. Wouldn't you like to know?

What are you doing?

Friday, April 8, 2016

How We Do It, Part LVIII



The liminal is a transitional period and carries a sense of ambiguity and disorientation. I feel it most acutely during the dark hours before dawn. A threshold, an open door, that strip of wood that marks one room from another, and I am on the other side.  I hover there at the liminal. Sophie had about six small seizures that we call big this morning. They came as she slept, a jerk, a groan, a stiffening of her arms and then the rhythmic fold, unfold, fold, unfold. She thrashed this morning when the jerking stopped, out of beat, and then smiled, a grimace before she lay back, limp. Seven times. The threshold of sleep and wake, death and life. I hover there at the liminal. Disoriented, even as I thrust one foot over, receive a blow to my face from her errant arm. The space between us liminal, too, where she ends and I begin. Having crossed over, she ate raspberries and cinnamon toast for breakfast while I sipped coffee. I drove to something new the other day, an open road, release. I entered the highway on a short ramp, slowed to avoid something that lay across the road, a broom, yellow stick and chopped off bristles, dropped there I supposed, by a witch who was done with flight.

Thursday, April 7, 2016

I'm in the mood for


Lucille Clifton. 



listen,
you a wonder.
you a city
of a woman.
you got a geography
of your own.
listen,
somebody need a map
to understand you.
somebody need directions
to move around you.
listen,
woman,
you not a noplace
anonymous
girl;
mister with his hands on you
he got his hands on
some
damn
body! 








Thank you, Lori, for sending me this poem! Lori Brozek and Jeneva Burroughs Stone and I had the best conversation the other day about what it means to be a middle-aged woman. We talked about bodies and sex and things both licit and illict. We talked about inhabiting fully our own. All three of us are writers, and all three of us are mothers of young adults with disabilities. Both Lori and Jeneva, as well as my friends Erika and Alicia, work on and put out a beautiful literary journal called Pentimento. You should check it out sometime. Buy a subscription. Support them and people with disabilities and artists with disabilities. Here's the link: 

Tuesday, April 5, 2016

Basketball Agita and a Punch to the Gut



So ya'll know that I am the world's least able athlete, have an antipathy toward football that rivals one toward Drumpf and am otherwise bored out of my mind by sports with two exceptions: when my sons play anything, I'm into it and I am a Tar Heel basketball lover of the nth degree.

So, yeah. Last night. I have a friend who can't watch the Heels play anymore because he's afraid he'll have a heart attack. I felt some serious agita last night, lying on my bed with Henry sprawled next to me and the laptop open to the final NCAA championship game. Oliver is on the east coast with my parents, but when Marcus Paige shot that 3-pointer to tie the game, I called him and before I could scream in exultation, The Big O screamed back at me that VILLANOVA WON, MOM! VILLANOVA WON! And Henry and I looked back down on the little screen which evidently was a second or two behind the regular broadcast and watched Villanova make that final shot and wow. Just wow. Or should I say holy shit. And then I just expired, as did Henry.

Anywho.

On another note, I was up most of the night with Sophie. We're going through another weird period, and I'm just barely keeping it together. So many of you help me to keep it together, and I am continually reminded of the grace that lives in this world. I'm frustrated and pained at what's going on -- not just in my literal world but in the world at large. Being able to channel that frustration and anguish into writing keeps me quite literally alive, and my post over at marijuana.com today was like a reverse sucker punch.  Please visit it, give it some love and share it if you feel like it. Here's the link:

The Literal Beating Heart

Monday, April 4, 2016

Going Back to Sleep with Stevie Wonder



You're up at five because you might still be on east coast time. You meditate and feel a wash of gratitude for the day you spent with friends from the east coast, for Sophie's dry palms (you'd felt them earlier), for something new in your life, for the beautiful morning. You do some work for The Job That Might Be No More. You make an egg and toast for Henry and refrain from telling him that last night you looked through his school papers and read on his leadership application that you were his mentor and most admired person because you take care of my sister and never give up and  she is always there even immediately after she's mad at me. You also refrain from telling him that your eyes dripped tears on the copy machine. After he leaves, you begin the process of getting Sophie ready for school. You're out of coffee (significant for what follows). Sophie has actually been up for hours, making your east coast time wake-up slightly less painful because you'd be up with her anyway, but you refrain from giving her CBD because you believe that she has reached saturation and that might be the reason for her inexplicable turn for the worse over the weekend. You have been stifling distress about this, but this morning her palms are dry and warm as opposed to clammy and cold, so you feel relief and wonder whether you'd better start yet another strain of the CBD or keep to this one at a lower dose. The only trouble is that the new one costs about five times more than the old one, and now that you have The Job That Might Be No More, you're definitely not going to be able to afford the new one. You'll think about that later and all the implications of Cannabis Capitalism as you've had no coffee and you forgot to buy some more for the third day in a row. You make Sophie's lunch and pack it in her backpack, then toast some bread and spread peanut butter on it for her, slice some strawberries and prepare her meds. You bring her into the kitchen and feed her. She seems much better, but by the fourth bite or so, she goes into a slow-motion dance, her arms bent at a weird angle, her fingers fluttering and her head turns to the left instead of right which is strange. You call her name and try to get her attention but she is elsewhere. You dissociate. In a couple of minutes she begins chewing whatever was in her mouth, and you finish feeding her. You bring her into her bedroom to change her for school, and she lays back on her bed and falls asleep. You turn on her iPad and curl up beside her listening to Stevie Wonder. Don't you worry bout a thing. You fall asleep because you've had no coffee and in your dream you are young and someone you loved is in the dream, but it's ok to wake up. It feels delicious today to have gone back to sleep, to then wake up.

They say your style of life's a drag
And that you must go other places
Just don't you feel too bad
When you get fooled by smiling faces.

LinkWithin

Related Posts Plugin for WordPress, Blogger...