Just Say No

I have no other photos from last night -- the Shebooks reading in Eagle Rock -- than the one above which cracked me up, unless you want one of the great Denise Emanuel Clemen, author of Birthmother, and I about to plant a big smack of a kiss on one another's lips for a mutual friend who couldn't make the event. I'll spare you that sight, though, and just say that the event was wonderful. I'll post the links to the short memoir and fiction of the other writers and mine, so if you're hankering for some awesome writing and have an extra $2.99 lying around, go for it!

On another note, I'm currently in the business of just say no, with a sort of twist on Nancy Reagan's ridiculous admonition so many years ago. The twist is that the advocacy is in the field of medical marijuana and getting lawmakers to ease up on the laws. There's a formidable group of women and men who work diligently on all of this, and I've done my best to publicize their efforts here on the blog and on my Facebook page. I was, at one point, one of the designated advocates to work on the issue in California, but this morning I decided to just say no. To be honest, other than writing religiously here about the issue, particularly as it pertains to Sophie, my efforts have been minimal. I am comfortable with what I've shared -- our personal experience -- and believe passionately that every single child in this country should have the same access to a medicine that might help their own child with refractory seizures or other diseases. I also believe that marijuana should be legal -- yes, even the stuff that makes you high. Period. However, I just don't have it in me to do the non-profit foundation stuff anymore. I don't want to be a part of an "army" with all that entails -- the war imagery, the in-fighting, the politics, the politics, the politics. I really don't have it in me. I've told myself that wimping out is my perogative -- after all, I've been doing this for nearly twenty years, and many of the people working on this current "campaign" have very young children, have no inkling of the toll it takes on some people, year after year. I feel that toll, and I'm actually not ashamed to admit to it.

So, I'm just saying no. When I stare at that sign about walls, I think, of course. I am a wall in many ways, very strong and built of peasant stock. Many people lean on me, have leaned on me, continue to lean on me, and that's good. I'm grateful for my strength and grateful that I have the wherewithal to provide support. At a certain point, though, I will fall, and just as I realized very suddenly one day long ago that I was in charge of Sophie and that the medical world was not going to help us, I realize that I am in charge of me and have to minimize some of the leaning. Does that make sense? I'm not saying that I don't want to help anyone anymore. I'm just saying that this campaign is just too much for me right now, and I'm backing out.







Here are the Shebooks links. You can also buy these titles on Amazon!

Elizabeth Aquino Hope for a Sea Change
Denise Emanuel Clemen Birthmother
Laura Fraser The Risotto Guru
Mona Gable Blood Brother
Zoe Rosenfeld Owl in Darkness

On Being a Pariah On Facebook and the Ice-Bucket Challenge

At this point, if you don't know about the ice-bucket challenge that is circulating on social media, you are either living under the proverbial rock or you're just very, very lucky. I was "challenged" quite early on and declined to dump the water over my head, not because I'm afraid to get cold or because I'm a hater or a spoiler, but because there was something about the whole thing that got on my nerves. I wondered if it was my own ego getting in the way of having fun along with millions of other people, many of them my own friends and family, including my sons. I wondered if it was jealousy, because I've been trying to raise money and awareness for epilepsy causes for the last two decades and, most recently, for medical marijuana. I figured it might have to do with my general dislike and growing mistrust of the non-profit world, its ties to pharmaceutical companies, the vast amounts of money being exchanged with ever dwindling amounts directed toward real research and cure. I wondered if it was just my own crotchety contrariness. Maybe it was all of those things or none of them, just that weird instinctual feeling that I am hard-pressed to articulate.

In any case, I watched a few of the videos, pretended to enjoy a few more and then quit clicking. Then I read this, posted by a friend, a survivor of breast cancer and, evidently, a fellow ice-bucket challenge pariah. It's a statement by the Breast Cancer Action Group who has also admirably argued against the whole pink ribbon campaign, arguing that the vast marketing machine that these "campaigns" fuel works against research and cure.

We are approaching illness and healthcare assbackwards if we continue to determine which diseases get critical research and support dollars based on the appeal and fun factor of their fundraising campaigns! This is a mad way to confront illness and disease. In this new world of philanthropy by popularity contest, the future looks very scary. Only diseases lucky enough to be the beneficiary of a viral, “fun” campaign will capture public attention and funding. Savvy marketing, motivated self-starters, random acts of kindness will determine who gives a toss about people dying and the disease or illness they are dying from.This haphazard approach to healthcare and research funding isn’t the solution. No single life-threatening illness is more deserving than another. But all this wonderful generosity from a caring public willing to embrace the cause of the day serves as another nail in the coffin of a different kind of solution to illness, disease and ill-health—a solution that requires government funds, public money not private giving, that ensures people everywhere are able to access quality healthcare; that makes decisions about the allocation of research dollars based not on cyclical fads or randomly successful, social media campaigns but on evidence-based needs and outcomes.The #IceBucketChallenge is well-intentioned and has raised a lot of money for the ALS Association. But this disease-by-disease popularity contest approach to funding research is not a sustainable way to confront illness and disease and pushes responsibility for public health onto the private sector. This takes us in the wrong direction. We all deserve better.

Thank you, Yvonne, for turning me on to this, for helping me to figure out just why I couldn't do the "challenge" and for educating me about breast cancer and efforts to treat and cure it.

You know, some people are going to read this and think, at best, that I am a Debbie Downer and very short-sighted. At worst, they'll think I'm arrogant and just putting people down that choose to do the challenge. Even my sons gave me a hard time. But that's ok. I get it -- I get both points of view.

For the record, I made a donation to ALS, a horrific disease that has claimed the lives of several people I know and love. I sure hope they figure out how to cure it soon, and I hope we as a culture and a country can move toward more communal values -- maybe more lasting and comprehensive than filming ourselves dumping ice-water over our heads or buying pink Kitchen-Aid mixers.

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.

What Heather McHugh, Caregifted, Molly Ringwald, Robert Pinsky, Poetry, Respite, Seattle and I have in common

Victoria, 2013

That's me and Heather McHugh, the extraordinary poet, MacArthur Genius Award winner and founder of CAREGIFTED, the organization that sent me on a week-long respite trip, all expenses paid, last June in beautiful Victoria, Canada. Keep reading the rest of this post to learn about an upcoming benefit for CAREGIFTED in Seattle right around the AWP conference. I'll be at the benefit and would love to see any of you there! Please share if you're a caregiver or a Seattlite or just know of people who might donate to this worthy organization.


via Heather McHugh's Facebook page:


PRETTY IN PINK star Molly Ringwald not only won hearts by doing John Hughes movies, but she also sings JAZZ! She'll be coming to Seattle on Feb 28 to do just that, a performance for CAREGIFTED caregiver respite-- and so will emeritus US POET LAUREATE Robert Pinsky and world-touring jazz pianist Laurence Hobgood-- all three are taking time out from their own tours in order to come to Seattle to perform for the benefit of the weariest souls on earth-- and it'll all happen at the eye-boggling Chihuly boathouse (a private venue). Only people who get their tickets at this link can come!

http://www.strangertickets.com/Browse#search=Chihuly%20Boathouse

With more than 10,000 writers due to come to town for the AWP conference that week, and only 175 tickets, the slots will get swallowed up-- so if you have an interest in caregivers or if you already live in the incomparable Pacific Northwest, you might want to grab your tickets BEFORE the announcement is posted elsewhere this week to all the out-of-towners making their own plans for a week here.. ALL proceeds go to respite for the weariest of family caregivers-- these are the ones who have spent a decade or more giving up opportunies of their own in order to take care of someone who can't take care of him or herself. And they do it until one of them dies. Talk about love. No better Valentine's day gift than this one, for you or anyone else.

Caregivers of the kind CAREGIFTED serves are saving ALL OF US billions of dollars of institutionalization costs-- and they are invisibly working day and night in every extended family, every neighborhood. Most people turn away, if they notice at all. But the fact is, these caregivers can teach us the truth about love. Our first single dad caregiver (of a severely disabled teenager) is taking his CAREGIFTED getaway in 2014-- he and another caregiver who will be at this Chihuly Boathouse Benefit Soiree and both are featured in this clip: http://www.youtube.com/watch?v=iZ78gHne0LM

(The other is the woman who MADE the film clip, the cherishable Elizabeth Aquino). At the event Feb 28 (5 to 8:30) you'll be able to raise a glass to both of them, and 8 other CAREGIFTED awardees, and also see what Adam Larsen has been doing lately with our CAREGIFTED documentary (he just appeared on POV on PBS).

Not to mention a chance to bid on rare art works like a signed Samuel Beckett novel's first edition, and a signed Linda McCartney photograph, holidays in Whistler and Vancouver Island, and more...

This event ain't cheap, but includes all these amazing people, artists, performances, food, drink, and a location that you'll never see anywhere else-- one-of-a-kind, a real dazzler-- and your choosing THIS for a Valentine's Day present to someone who can be in Seattle Feb 28 will ensure we can go on giving our all-expense-paid weeklong getaways to these most desperately-tired caregivers from all over the country.

This is MY Valentine's gift to YOU, letting you know before the rest of the world does. Now pass it on, yourself, for love!

http://www.strangertickets.com/Browse#search=Chihuly%20Boathouse

Respite: The Greatest News Ever

via travelwalls.net

If you cup your ear and lean toward the west, you will hear a big ruckus coming from California. If you lean a little further, you will hear some squeals of surprise and pleasure coming from the Southland. If you lean even further and perhaps nearly tip over your chair, you will hear my tiny yet inexhaustible voice nearly shouting with happiness.

You see, I just received word from Caregifted that I am going to Victoria, British Columbia for a seven-day all-expenses paid trip of rest and relaxation.

!!!!!

What more can I say? Heather McHugh, the esteemed poet who also received a MacArthur genius grant, founded Caregifted as a non-profit organization that aims to bring respite in the form of all-expense paid getaways to full-time life-long caregivers of severely disabled family members.

When I applied for the respite week and wrote about my life and history caring for Sophie, I told them that after nearly eighteen years,  a week-long respite specifically awarded for long-time caregivers seemed more like a dream than a reality.

Good grief. I'm near speechless.

Team Sophie and the Walk to End Epilepsy!

The sky was a brilliant blue and the Pasadena sun relentless, but TEAM SOPHIE gathered at the BRAIN NOW bus at the Rose Bowl to walk together to help END EPILEPSY.

Here's our STAR: Gretchen  of Second Blooming who RAN a 5K for Team Sophie and raised more than $500! I adore her. Thank you, Gretchen!

Here's our INSPIRATION, Sophie in front of the Brain Bus. Those teams who raised the most money got their names on the bus. Thank you, everyone who donated!

Here's one of my best friends -- Cara -- who with her husband and girls triumphantly completed the 1K Stroll with us!

She has always been Sophie's and my biggest supporter, and I adore her, too.

Thank you, Cara!

Here's the whole TEAM SOPHIE -- friends, relatives and Sophie's caregiver, my friend Carmen with her entire family!Thank you to each of you. 

I'm not sure how much you realize what it meant to us to have you there, walking alongside Henry, Oliver, Michael, Sophie and me.

I just loved these ladies and their hilarious tee-shirts. As you all know, it's incredibly difficult to

keep calm during a seizure, and those of us in the trenches, dealing with it daily just want epilepsy to END.

 See you next year! 

If you missed donating, you still can! Visit Team Sophie on the End Epilepsy Walk page here.

The Helper Syndrome

I posted a few light words about working for non-profit foundations over at Mama Manifesto and then weirdly  read these words this morning by Ezra Bayda:

Often our efforts, even for a good cause, are made in the service of our desires for comfort, security,and appreciation. Such efforts are still self-centered because we’re trying to make life conform to our picture of how it ought to be. It’s only by seeing through this self—the self that creates and sustains our repeating patterns—that we can move toward a more life-centered way of living.


You can read the light stuff HERE.


You can read Ezra Bayda HERE.


I'd love to start a discussion about non-profit organizations, the mechanics and need or otherwise of fundraising, what your experiences and thoughts are.