Writing, Respite and Denali

I'm still here in beautiful rural Washington. There's not much to do but relax and listen to the birds, putter around the beautiful house, wander outside and chat with the goats, read novels (Tommy Orange's There, There and Ottessa Moshfegh's Eileen), read some poetry (Marie Howe's Magdalene), eat a plum, eat a peach, let a corner of a chocolate bar melt in my mouth, suck on a Tootsie Pop and gaze at the Bird Photographer.

I haven't written much, but I've arranged and re-arranged my hundreds of pages into a sort of order. It took hours and hours to do that much, but a structure is finally, literally, at the tip of my fingers. My plan is to finish up in the next day or so and then, when I get home, re-type the whole lot and send to the editor as a rough -- extremely rough -- draft.

The Pacific Northwest in the summer is perfection. It was here -- or up in Victoria -- where I spent a week by myself only four years ago, a recipient of the magnificent Heather McHugh's organization, Caregifted. That week changed my life and opened me to the possibility of and hope for more respite from the life of caregiving that, while enormously rewarding and filled with grace, has also drained me of myself or the essence that keeps me vital. I realized then how important it was to seek respite in whatever way I could, to open myself up to the possibility of replenishment and to work just as hard to get that as I do to take care of my daughter. While I am aware of the enormous privileges I've been granted that others just do not have, I also remember the nearly twenty years without significant respite. I remember what it was like to have no hope for it.

We caregivers must get back to ourselves as if our life depended on it because it does.

photographer: Carl Jackson

Listen to the latest Who Lives Like This podcast -- a rousing discussion of nurturing the self with Paige Figi, the director of Coalition for Access Now and the mother of Charlotte of the famous Charlotte's Web cannabis oil. Jason and I interviewed Paige just a week before she climbed Denali, the highest peak in North America. Here's the link:

Who Lives Like This?!

Yeah. I know. Not all of us will climb Denali, even if we desired to do so. Yet, still, there's joy to be had no matter how you choose to find yourself.

As my friend, writer Chris Rice said the other day, Your book is your Denali.


Onward.

The Awareness of Birds

Toes of sneakers on a dirty sidewalk with a silhouette of a crow blacked into the concrete.*

I think I told ya'll about my new gig, over at Cerebral Palsy Foundation. I will be writing, I think, monthly about various topics related to disability. CPF consults with the television show Speechless, a hilarious sit-com that very accurately portrays a family who lives with disability. The show features a terrific actor, Micah Fowler, who actually has cerebral palsy. Minnie Driver plays the mother, and I have to say that if it weren't for her being incredibly thin and glamorous with a British accent, the part could be mine.

In any case, this writing gig is awesome, and my first short piece is up on their blog. It's called The Awareness of Birds. March was Cerebral Palsy Awareness Month, so the topic for the month was "awareness."

Check out the Cerebral Palsy Foundation website, too. Poke around, donate, increase your awareness.











The Awareness of Birds













*I'm learning about how to caption photos for the vision-impaired. I'm bummed that I haven't been doing this all along, but I guess that means that even the most aware of us need to constantly improve and learn and listen.

The New Job

Woman Writing
Picasso

I've alluded to The New Job during the last couple of months, so here it is. I'm writing for a company called Weedmaps and their websites: marijuana.com and cannabis.com. I'll also be helping to edit other material. It's full-time. I'll be posting several times a week -- interviews, columns, interesting stories that are all related to medical cannabis and human interest. The marijuana.com website is up and running and is an important resource for all things marijuana-related. The cannabis.com site is a work in progress, and eventually my writing will primarily be featured there. I can't begin to express how grateful I am for this job to have come my way, how perfectly it works out for me both financially and flexibly. I will work from home. If Sophie has a bad day and needs to stay home, I can still work from home.  Praise Jesus and hallelujah! Or shall I say praise Cannabis! The irony isn't lost on me that I am still a person who hasn't "partaken" in nearly thirty years, that I got this perfect job because of the often torturous path to healing for Sophie, that I can now parlay my skills into educating and inspiring other families to look at cannabis as a healing plant.

My first article, an interview with a wonderful writer, mother and dear friend and compadre is up today. You can read it here:

Making THCa at Home: An Interview with a Mother


Please leave a comment on the site if you feel like it. And I'd really love it if you'd give me some ideas and suggestions for future interviews, articles and so forth that I could work on. Like everything else in life, it's a grand collaboration, and I wouldn't be here if it weren't for you.

We Shall Be Changed

I woke this morning in a groan as a woman in Edwardian dress with a little child stood at my door, two ghosts, dark and terrifying silhouettes. Wraiths.

This morning I am busy, getting ready to drive down to Orange County for a meeting. Before I go, though, I wanted to share this with you because it made me cry, the dream a faint hangover dispelled.

Work Blessings

I felt a surge of happiness this morning as I sat on my bed, my glasses tipping off my nose. I was going through my copy of Gabriel Garcia Marquez' Strange Pilgrims, marking off passages, taking notes, re-reading the stories that -- dare I admit it -- thrill me? I'm getting ready for my inaugural literary and food salon this Friday evening. I have ten people coming to Books & Bakes, and another ten in two weeks. The menu is planned -- a sampling of Colombian and Mexican specialties -- and tomorrow I'll shop for the ingredients that I'll prepare on Friday. While the cooking will be a pleasure, it's the reading, the delving in, the excitement of sharing what I love with others, and the anticipation of discussion with a group of intelligent people that makes my heart surge. That burst of happiness is related, too, to the blessing of work -- to doing what one loves, no matter the compensation. It's the word on the page, the feel of the book, the thrill of entering the writer's imagination so effortlessly and then sharing it.

Buche Wiped

Red Velvet Buche de Noel with
Peppermint Buttercream

I'm wiped out from baking and frosting and decorating but am grateful for the bit of work. I need more work in 2015, okay? Universe?

Red Velvet Cupcake with Peppermint Buttercream

Remember this photo from a few years ago? It's so silly and makes me happy:

Merry Christmas Eve, lovely readers!

How Not to Figure Things Out

dedicated to Mary, Tanya, Heather and my Mom

It occurred to me the other day that I'm not going to figure things out. I probably use that expression many times a day in various forms -- I can't figure it out, You'll figure it out, Figure it out! I need to figure it out, Just figure it out! -- and certainly popular culture is filled with tips on how to do it or on how other people have done it. I can figure out a math problem or how to work my new phone or what to do about Oliver's schooling or how to help Henry navigate high school, but there's no figuring out the really big life things. I'm not saying that things just happen without effort and thought, but it's a rare big life thing that is figured out in the sense that one comes to an answer in a direct way. Does this make sense? Because there's a lot that is unbloggable now in my life, I might sound vague, but what I can draw an analogy to is my early years with Sophie, right after she was diagnosed and probably for the next ten years or so when I was always trying to figure things out. This meant many active hours of brain anguish, of being on all the time, in the event I'd miss something. When I say that, I mean it quite literally. I spent conscious and unconscious hours worried that if I didn't do something or think something or research something or talk to someone about something, I'd miss the chance to fix Sophie. In other words, I would miss figuring things out. I remember with an almost PTSD-like intensity the cover of a Time Magazine article about child development and the brain, how at age three, a window shut on language. I believe that has been debunked since then as we've discovered the brain's capacity for amazing feats of regeneration, but the sound of that window slamming haunted me for years. I spent a lot of time trying to figure things out before that window slammed and well afterward.

When I sat down to write this morning, I looked at the collection you see in the photo and realized that I'd made a sort of shrine, and that gazing often blankly at these things helps me to center myself and channel all the energies I have in me and outside of me to create and to write. There's a card there at the back that a blogger friend who's become one of my best friends sent me. There's a little jade statue of the Buddha, and a tiny tin of holy dirt from a shrine in New Mexico that my friend Tanya brought me. There's a bit of driftwood from the beach in Victoria where I spent a week last year, a week given to me by Heather McHugh and her organization Caregifted. There's a little house behind it with the words A house without books is like a room without windows. These objects sit on a box of postcards from Penguin that replicate one hundred book covers, and in front is a glass coaster that my mother gave me years ago with a sweet saying. I always feel joy and content when I write, to tell you the truth, and that's true for both online and off-line writing, but particularly so when I sit in a sort of reverence and allow it to just happen. I hesitate to use the word channeling for all its over-used weight, but I'm not sure what else to call the release of fingers on keys, the rush of language and words falling into place. I'm not figuring things out, though, and it's not about me.

I get a lot of emails and telephone calls from people with little children who are new on the path of disability or epilepsy. I'm always struck by their bravery and by their sense of urgency as much as by their anguish. I recognize all of their emotions because I've had them or continue to have them. When I cast my memory back to my own early days with Sophie, I remember the visceral details of trying to figure things out, but I don't remember much of who I was or how it happened, or even how I did it. I want to say, sometimes, you won't figure things out, but even twenty years later, I don't have the wisdom -- or presumption -- to do so.

If I could, I'd tell them how not to figure things out, but I haven't figured that out either, other than to treat with reverence and love this place inside of me that persists in opening to possibility.

Korean Spas, Catholics, Epilepsy, Stigma, Seattle and Other Astonishing Things

So, I did a little work today for the non-profit that helps kids in foster care. I commented on a friend's article on a Catholic mother website and veered off topic and then regretted it. I think it was the Catholic part that set me off. I also went to the Korean spa for a scrub, and when I was finished I told a friend to remind me to do it more often. Honestly, it's like being reborn. Speaking of Korea, I just read an article about South Korea changing the name of epilepsy to cerebral electric disorder. "They" are doing this because of the stigma surrounding the word -- and the condition. In Korea, epilepsy has been considered the result of "evanescent spiritual forces and even demonic possession." I'm not sure what I think about changing the actual word and how much it might remove the stigma. I do remember, though, back in the day, when people would ask me what was wrong with Sophie, and I'd tell them she had a seizure disorder. It's not EPILEPSY, is it? they'd inevitably answer, and then I'd sigh and tell them yes. Back in the day, I'd also tell them the statistics and how epilepsy is the most common neurological disorder in the world, that anyone can have a seizure at any time in the life-span. Blah, blah, blah. If the person asking me was utterly clueless, they might add, But can't they give her something for that? or the even more clueless She'll probably grow out of it, right? I'd politely answer the questions, make them feel better and then scream in my mind.  As for the demonic possession part -- well -- there are certain types of seizures that perhaps warrant that description, especially if we didn't know any better. When Sophie had atonic drops, she could be standing up or even sitting on the edge of her bed, and in the blink of an eye -- or even half-blink -- her face would be planted on the floor. I don't think I could have pushed her any harder or quicker if I'd put my hand on the back of her head and slammed it there myself. The fact that it happened, sometimes, upwards of a hundred times a day warranted demonic as a descriptor.

Speaking of Catholics, there's the medieval case of Christina the Astonishing, a woman who lived from 1150 to 1224 and whose seizures were understood to be her willing submission to demonic torments to provide much needed respite for those in purgatory. The medical abstract I read about Christina stated that her case was unique in that she provides an ingenious link between the demonic and divine explanations of the disorder. Oy. Catholics! Neurology! (You can watch Nick Cave sing her life here)


Anyhoo.

Well, that was certainly an irritable rebirth, wasn't it?

Sorry.

I'm a bit wired up having been in terrible traffic all day. The dang Academy Awards are on Sunday, right up the street from where I live, so streets are closed and helicopters are circling and it's hard to not be a hater and feel it's all bullshit. On the plus side, I'm getting ready to fly to Seattle tomorrow to attend the Caregifted benefit. I'm excited because I've never been to the rainy city, and I think Heather McHugh's foundation is one of the most outstanding in the country and certainly deserving of donation. You can visit the site here. Heather told me that she'll be showing the Extreme Parenting Video Project at the benefit, so many of you will make the party virtually! If you haven't seen the video and would like to do so, go over to my right sidebar and click on my picture holding up that sign. I'll be leaving Los Angeles just as some rainstorm of the century hits it, and word is that Seattle will be sunny. What are the chances of that?

I might not be posting very much over the next few days, but I promise to get out of this irritable mood and rebirth myself.

Delirious Sex, Intense Happiness, Tiffany Box Cakes, and Beautiful Moye

I've got a red velvet cake in the oven and nothing of import to report (im and re), except that I'm tired of inspiration and putting one foot in front of the other and gratitude and sayings like Shoot for the moon. Even if you miss the stars. The cake is an order that will be assembled with cream cheese frosting tomorrow and then made to look like it's a Tiffany box. There will be pictures, although this is the first cake I've made in a few months and I'm praying that the old hands won't be stiff and rusty. Sophie is home, sitting in her wheelchair and lethargically playing with beads and an old hairbrush. She had a number of seizures today, so I landed up giving her Diastat (rectal valium) and kept her home from school. This meant that I had to cancel my other plans which included a job interview and a visit to The Woman in the Quiet Room, but I have a babysitter coming soon who will relieve me so that I can go on my Californian rounds and pick up my sons from their schools. The photo above is of a charming piece of art, created by my Oldest Not In Years But In Time Known Friend, Moye Thompson, whose work I've featured before. She is a remarkable ceramist, and yesterday, when I visited her new show, I was once again struck dumb by her beauty and the beauty of her creations and her, herself. The show is called Shelter, and if you're in the area, you should stop by Bergamot Station in Santa Monica and check it out. Here are some more pictures, and then I'll put a copy of the poem that you see above (a poem that I've posted many a time on the old blog that always makes me laugh). And just so you have an idea of her ingenuity, she carved those tiny little letters into clay and then fired the cylinder that you turn with a tiny little twig so that you can read the whole thing. Over the top, Moye.

The poem:

Success Story

My clothes are perfectly contoured
to my body. my shoes & socks
fit just right. My cat is a delightful
intelligent animal. My apartment
is great. The right location,
cheap rent. I eat the best food.
My friends love me. I adore them.
My lover is terrific & beautiful.
The sun is shining. There are trees
even in the slums in Washington.
I have tons of money & a gorgeous 
air conditioner. Great art hangs
on my wall. I live a spine-tingling life
of delirious sex & intense happiness.

Terence Winch

Saturday

Oliver is selling lemonade at the corner today for $.75 a glass. He squeezed the lemons last night at 11:00 and made simple syrup with The Husband. He wondered if Henry might go door-to-door and take orders and then deliver, but Henry, being Henry, said, Nah, I don't like working like that. So, he's in his room, playing video games or watching violent movies with lots of sex.

Just kidding.

Sophie is having a sleep-fest which she does periodically and which I believe is her body's way to cope with a period of particularly brutal and multiple seizures. I periodically poke my head over the door and watch to see whether her chest is rising and falling, and then I feel somewhat sheepish to still be doing that and then I realize that it's perfectly reasonable given our situation and Sophie's troubles and then I wonder, for a bit, if I'm irrevocably damaged and then I realize that we all are in one way or another but that life just keeps on blowing its breezes and throwing its lemons and pushing out mint.

It's another beautiful day in Los Angeles. I'm going to finish The Interestings and start on The Mouse-Proof Kitchen by Saira Shah. It's a novel about a couple living in southern France with a disabled child, and I believe the writer herself has a child with seizures. I know that someone (maybe here?) told me about Saira Shah a long time ago, and I pre-ordered the book on Amazon. It was downloaded to my Kindle the other day, and just this morning I read a review. I also might finish spray-painting two metal chairs that I picked up at a yard sale and that I'm working on, slowly, ever so slowly, because, really, I'm more like Henry when it comes to that kind of thing and would rather say Nah, I don't like working like that. As for sex and violence, I prefer the former.

Reader, how is your Saturday shaping up and what are you reading?

A gratitude post from your resident carmudgeon

The Husband took Sophie out this morning to the Santa Monica Farmer's Market, where they purchased some of the above apricots which were then sliced and brought to me on a plate while I whiled the hours listening to federal grant review talk.

The apricots were a high point.

I am grateful for work, for The Husband's flexibility today, for near-constant sunshine, for funny friends, for Oliver's upcoming semi-final baseball game (who knew their losing team would make it this far!), for Henry's eighth grade graduation tomorrow, for my Duet bike which will soon be ordered and delivered, for the friends who made it happen, particularly Missy B., and for apricots, golden yellow with a blush of pink.

I'm on the phone

There'll be scant blogging on a moon, worn as if it had been a shell over the next few days. I'm sitting at my desk, on very long conference calls, doing some bizness for the government. And, no, I'm not wire-tapping or eavesdropping or figuring out how to be a whistle-blower and gain sanctuary in Russia. I am in my pajamas, drinking coffee and trying to concentrate on Some Very Important Initiatives. During my down times, I might post some poetry, so please come back.

I am wondering whether you

would rather see the pile of papers in my filing box, papers that I need to go through and make sense of, insurance claims, etc., that reach all the way up to suicidal Virginia Woolf's nose:

or,

see what I made myself for lunch today, smoked lemon pepper salmon with cream cheese on a toasted bagel, positioned in front of hydrangeas and roses?

or

listen to the poet Frank O'Hara read An Airplane Whistle (after Heine) which is not from his collection titled Lunch Poems.

Work and Planes

I'm not sure why I look so distorted in this photo, but here I am at a grantee meeting, getting ready to participate on a parent panel discussing Project Access, an initiative to improve the access to and healthcare for children and youth with epilepsy. Before the parent panel, I gave a presentation that I've given before, titled "Reflections with the Spice Island Queen." Some of you might remember the wonderful exchange we had here on the blog with a young medical student who was considering applying for medical residency in pediatric neurology. She contacted me with a request to ask my readers what sort of doctor they wanted for their children, and when I posted her plea, you answered in droves. You can read that post and the comments here. If I could figure out how to do it, I'd give you a link to see my Power Point, but I'm not that computer or blog savvy, so if you'd like a copy, please email me and I'll share it with you!

I used that post for a presentation and have now shared it with over 100 professionals in the epilepsy world. It's a testament to the power of our community that this one exchange has inspired a whole bunch of people to not only continue their work improving the lives of children with epilepsy and their families but also helped to spread and sustain the whole concept of "family centered" care.

My trip was a whirlwind one -- barely 24 hours from Los Angeles to D.C. and back, but I caught up on New Yorkers on the plane, gazed for hours at my seat-mate's arms that were covered in the most interesting tattoos (and restrained myself from stroking his arm as it was so smooth and decorative and sexy), watched with interest when the same seat-mate pulled out a lined notebook and began to draw incredible flowers with colored pencils, went back to reading MORE Magazine (for women over 40), closed my eyes and jolted awake with my mouth hanging open, mortified that I had perhaps snored and the man with the beautiful arms had perhaps heard me!, surreptitiously ate a package of cherry Twizzlers and finished a memoir on my Kindle.

I'm home now and have much to share with you about an event this Saturday in Los Angeles, but I'm going to bed, my own bed.

1/2 Hour Break

 

I'm sitting in my pajamas and robe at my desk with a glass of water and a sleeve of Girl Scout cookies, on a break from a job that entails being on an open conference call for nearly six hours. I wanted to tell ya'll really quickly that I've actually had a wonderful discussion with a friend of mine who is a Libertarian and that she might have convinced me to come to a community meeting of an LA mayoral candidate who is a Republican. All cliches are welcome here as comments.

I'll start:

May wonders never cease.

Henry and I went to our neighborhood village (yes, we have a village in our neighborhood, right smack in the middle of the Big City) this afternoon, and he got a haircut and I went to the bank and then we sat at Peet's and drank goofy coffee drinks. Oliver is in daily rehearsals for the musical OLIVER! and I admit that it's kind of nice to go out with the eldest son and just hang out. Bless that youngest boy's heart.

That's all I've got for this afternoon. I'm heating up leftover pork tenderloin in some kind of creamy mushroom sauce that The Husband made, Sophie just had a big seizure in her room while playing with her beads (overstimulation?) and it's very gray and very cold outside on this February night. I have to read gigantic federal grants because I'm on a review panel next week, and this post is a way to forestall the inevitable, so thank you for your time.

Project Access Learning Collaborative: A challenge

So, I'm feeling bright and chipper, a far cry from my earlier-in-the-week self when I nearly died on the airplane coming home from a business conference. I swear it wasn't hyperbole, either -- I must have had some sort of near-deadly 24-hour virus.

Anyway.

I work part time as a Parent Lead for a group that participates in a collaborative called Project Access. Teams from across the country, funded by grants from the federal government, participate in unique projects to improve the access to and quality of healthcare for children with special healthcare needs. Project Access works on quality improvement for children with epilepsy and their families, and these teams meet three times over the course of the grant, all together, to identify and work on strategies to not only improve care for children and youth with epilepsy, but also to foster the spread and sustainability of their efforts beyond the learning collaboratives as health care reform evolves. Each team is required to have parent and youth participants who are equal and integral partners, and my job is to help ensure that the parent and family voices are heard (I also do a fair amount of talking myself, as you well know!).

Here's where YOU come in.

Do you remember the astounding Spice Island Queen, the medical student who asked those of us with children with special needs for OUR OPINIONS? The post was titled Blog Call, and the response to this wonderful doctor's request for our help in guiding her as she continued her residency in Pediatric Neurology was enormous. If you didn't check back and read the comments that poured in after that post, please do -- they're all quite moving and very powerful. I knew that it was going to have to be my presentation at the collaborative meeting, so I asked my friend Cara's thirteen year old daughter to help me make a Power Point out of it and a subsequent conversation that I had with the Spice Island Queen -- a true collaboration. I think I can honestly say that my presentation, and the Parent Panel that came afterward, made up of several of the terrific parents on the teams present with our wonderful leader, Christy, was the hit of the two day brainstorm. If I knew how to post a Power Point slide show, I would, but I don't, so I won't.

But enough self-congratulation. I also want to highlight parts of the conference that drew my attention, in particular, and ask YOU, once again to help in our spread and sustainability efforts. If you find these interesting (and I know many of you will), please check out the links and send them to others in your circles.

Next week, I'll post the first of a short series of highlights of the conference and the work of the teams.

Carry on, Readers, with your own work! I have some exciting news that I'm posting later today!

Hitting the ground, staggering

Gustave Leonard de Jonghe

At some point on the plane ride home last night, I felt like I was dying. I'm actually not exaggerating, although I'm prone to drama. I had been feeling exhausted all day and attributed it to too little sleep and jet lag, two days indoors, the relentless gray skies of D.C., but around hour three of my flight, I felt that tingly feeling all over my body -- not a good tingling but a kind of warning that you're getting sick or you're already sick. I pushed it off for a bit, denied it but it kept coming and I nearly whimpered when I stood up to go to the bathroom. Halfway down the aisle, I stopped and turned around to go back to my seat because I knew I was going to faint. I made it to my seat and closed my eyes for the next few hours, feeling miserable and like I was going to die and I didn't care.

So, I'm home sweet home and have, perhaps, acquired the flu, but maybe only a mild version as I feel slightly better this morning and will, hopefully, live. I'm crawling into bed and staying there. I miss writing on my blog and I miss reading and commenting on yours. Hopefully, I'll be able to tell you about my trip and the great work being done for children with epilepsy and their families, but it's not going to be today.

I don't know whether it's jet lag compounded by too little sleep the last two nights or the two days spent under interior lights or Seasonal Affective Disorder triggered by the leaden skies, but I'm California dreaming and will wake up in six or so hours, there.

Inside all day, even hallways are tricky

REDRUM