Sunday, January 31, 2010

Saint Dymphna


I found this folk plaque in the Albuquerque airport on my way home the other day. I always understood that Valentine was the patron saint of epilepsy and had never heard of Dymphna, but she actually looks a bit like Sophie, and I was thrilled to spend way too much money for a cheap, hand-painted piece of wood.

Here is St. Dymphna's story, as depicted on the back of the plaque. It's interesting to see how epilepsy and mental health are linked together. This is an old fallacy, perhaps perpetuated by me buying it and hanging it on a wall.

I do love a talisman, though.

Santa Dymphna - invoked aginst mental illness and epilepsy - patroness of mental health workers and asylums


Dymphna fled Ireland with Father Gerebran, an old and holy priest and her father's court jester and his wife in the sixth century. Her father, in his grief at the death of his wife, demanded that Dymphna fulfill her mother's role as his wife. Her father eventually found her in a hut in Geel, Belgium where he demanded that she meet his perverted demands. She refused, whereupon her father slew her with his sword. At her gravesight miraculous cures of the mentally ill and epileptics have taken place. One of the world's largest and most progressive hospitals for the mentally ill is built on the site of her martydom.

Saturday, January 30, 2010

Ditto to What's Below (and why I've no comment on the latest Obama speech)

Jeneva, a brilliant writer and mother to a child with multiple disabilities, has written such an excellent and eloquent blog post, that I asked her permission to cut and paste it onto my own blog. I didn't want to run the risk of anyone NOT clicking over to it. She posts regularly at Busily Seeking...Continual Change


Thank you, Jeneva, for articulating what is so very difficult.


A few months ago, I answered a fundraising call from the DNC (Democratic National Committee). This was during a period when Majority Leader Reid seemed to be looking for any excuse to bury healthcare reform. The DNC representative urged me to give money so that the Democrats could "fight" for me. I pointed out that the Democrats were doing no such thing at the moment, that my husband and I paid out close to $15,000 every year, despite what is considered to be top of the line insurance, to care for our severely disabled son. When they did something about insurance coverage, I said, perhaps I might have money to give.


The man from the DNC and I got into a heated argument, during which my position was, I'll give you money when you prove to me you're serious, and his position was, we can't do anything unless we have your money. In the end, he hung up on me, mid-sentence.

And, despite some encouraging rhetoric from the President in the SOTU address, that about sums up healthcare reform for me: initiated by a party that keeps raising the bar on what it might take to give them permission to govern such that I expect them to argue soon that only the second coming of Jesus himself will give them the authority to act.

And, most importantly, a party that is content to exclude the sick and disabled and their caregivers (mostly women) from having a voice in the formulation of healthcare policy. Even in SOTU, the President emphasized the need for wellness and preventative care, without really addressing what it means to be living at the other end of the spectrum in Non-Covered-Medically-Necessary-Item Land. Every year. For us, it will be 17 years total in the end (Robert will quality for Medicare at 18)--unless states get more Medicaid funding--the waiting list in Maryland for various services for disabled kids is close to 2,000 people.

All others have been brought to the table: health insurers, big pharma, labor unions, economists, business leaders, and the like. Time has been wasted on Republican Senators like Olympia Snowe, who is content to fiddle while her own state burns at the mercy of big insurers (the State of Maine is suing Blue Cross, which has a monopoly in Maine, to prevent them from raising premiums). Joe Lieberman, who is no longer a member of the Democratic Party, is suddenly the most powerful person in the party. Max Baucus and Ben Nelson, who seem to care only about their futures sitting on the boards of insurance companies and collecting the big bucks, have wrung the justice and human compassion out of what could have been real reform. Economists shrug that only a small number of people will have negative outcomes under the Senate bill, glossing over the fact that it is the sick and disabled who will suffer under "reform" compromised further each day.

And yet we stick with 'insurance' rather than moving to 'healthcare.' What I have seen over the years is a health insurance industry that is dying because it cannot deliver what insurance really is, coverage in the event of catastrophic loss, and sits content to gut catastrophic care in favor of $10 office visits and free generic antibiotics. Essentially, these companies are, to some degree, culpable for the economic decline of the last five years, as culpable as banks that made irresponsible loans. Making people pay for a policy that will not adequately cover their expenses in the event of major illness is as craven as encouraging people who cannot possibly cover a mortgage to undertake that debt. But both industries survive, despite irresponsible behavior, because they are propped up by Congress, lobbyists, and big investors will to run up short term profits at the expense of long term sustainability--in other words, to make a quick killing (literally) on the stock market.

But the message to those of us who care for sick and disabled family members is to shoulder more personal responsibility--this is the message of the "Cadillac" plan tax, and, often, these plans are the only remaining comprehensive insurance plans on the market today. There are people in the U.S. who've taken jobs for lower pay or are afraid to leave their jobs and develop their careers because they've managed to land a job with a company that offers stellar health benefits. The difference between leaving such a job and pursuing your own dreams is in the form of personal bankruptcy.

Or, we're told that the rising costs of health insurance are the fault of people who need 'frills' covered, like medical supplies (as Harry Reid is alleged to have said), or who aren't making good choices about costs to begin with. Listen, when your employer chooses your benefits, you can't shop around. And when your child needs to go to certain specialists, especially if they're critically ill, you rely on the advice of the doctors already treating them. Taking care of a sick kid isn't like reading Consumer Reports to buy a car or a blender. And when your insurance company only includes one in-network medical supplier and you call the benefits people and they don't understand what enteral feeding supplies are and, therefore, don't have a clue about what other companies might provide those supplies--um, you really can't shop around.

On top of that, people like former Obama campaign manager, David Plouffe and various Senate aides have been stirring up fear by implying that it would be a jolly compromise to restrict lifting the pre-existing condition issue to children only. Which begs the question--how on earth are you supposed to care for your kid when both of you have pre-existing conditions, and you're the adult, and you're supposed to maintain your health so you can keep a job?

The bottom line is, the Democrats (like their Republican counterparts) who are formulating policy have little feel for or interest in how social policy really affects people. It's all a numbers game; it's all super-jock economics. Really. In a policy world in which the foreign affairs people are the BMOC, the equivalent of the star football players, and 'domestic' policy makes many male legislators cringe as though they were being asked to handle a used tampon, how can people count? In a world where David Brooks is still trying to pound his gender-based theories about mommy parties and daddy parties? Please. Can't we stop dividing the policy world into little buckets of gender-phobia? Aren't we all just 'parental' one way or another, 'parental' in that we all assume some responsibility for the working of society?

But, yes, my point, personal responsibility. For over 10 years, my husband and I have put aside our own needs to chase down ever-receding 'good' health insurance policies, switch jobs to avoid hitting life-time limits, and argue with unscrupulous companies like Cigna and Kaiser. Readers of this blog may remember that Cigna assigned us a case manager who verbally abused Robert's physical and speech therapists, trying to bully them into denying Robert care--the case manager who said, oh, Robert doesn't need to learn to eat because he has a g-tube. Kaiser denied coverage for the tube-feeding 'button' that acts as a port for food and water--without which Robert would be dead--it wasn't in our contract. When I pointed out how medically necessary this was (what is more medically necessary than the line between life and death?), the representative said not everything medically necessary was covered. He expressed regret for the possible outcome of Robert's death, but said that, on the bright side, the extension tubes for the button were covered.

And yet the talking heads, the legislators (Republican & Democrat alike), the president, his advisors, and the economists continue to talk as though insurance premium price increase can be solved if we just give people incentives to move to lower-cost plans--which are, as I know only too well, lower-benefit plans. Cover the healthy, abandon the sick.

You know, I worked hard all of my life to attend a good college, get good grades, earn scholarships for grad school, develop a positive and responsible work ethic, and I am, in the end, a highly-skilled individual. But this country's 'domestic' policies are designed to minimize my ability to support and care for my son, minimize the contribution I can make in the work force, and minimize my ability to keep my own independence. 'Go broke,' was the advice of one of my friends, a friend who worked on Capitol Hill for a long time, 'that's what most people have to do.'

Personal responsibility matters not a whit if that's the policy answer. Hey, I'm here, I'm working, I'm contributing, but the costs that I'm faced with, both social and economic, are beyond the scope of normal human endeavor. And that's the case with so many of us who struggle with educating and medically treating our disabled children.

When faced with the worst crisis of our lives, our son's sudden descent into life-long disability and illness, my husband and I did not shirk our duties. We stood up and fought. And we keep fighting, even though it feels like a losing battle at times.

And I want to know when the President I helped elect, and the congresspersons I voted for are going to do what's right, with no compromises to the insurance industry. I want to know when they're going to take their responsibilities seriously. SOTU is a start, but it's still just rhetoric.

Friday, January 29, 2010

Physical Hope


I went to the door today and picked up my mail, including a small, soft package. Inside, I unwrapped the mysterious object above and the following note from my blogger friend Kathleen at the beautiful Hill Country Mysteries.

Dear Elizabeth,
This is a sea-heart. I found it on the beach in Miami after a storm.
It's the seed of the liana vine that grows along rivers in Central and South America. The seeds fall into the river and are carried out to gulf/sea/ocean, where they float in the currents. A seed may float for 18 months, two years, or more, through hurricanes, and no rain, burning sun, hundreds sometimes thousands of miles before working up on a shore.
I'd hold the sea heart in my hand and think about that journey, how far and how hard. And I'd think that if a little seed could make that trip, I could make the next day. Then I'd put it in my pocket and wrap my fingers around it when I was discouraged. Physical hope.
I'm hoping for health for Sophie and the best for you and your family too.


Is this not the kindest gift?

Thank you so much, Kathleen. From the bottom of my heart.

I have physical hope, now.

Thursday, January 28, 2010

Home Again, Home Again, Jiggity-Jig


Like an idiot, I thought I was going to the DESERT and didn't think that it's actually COLD in New Mexico since it's HIGH DESERT and, in fact, there was snow on the ground and less than forty degree temperatures. I did bring socks, though, and wrapped my two Los Angeles wraps around and around me when I walked the streets of Santa Fe. I looked HUGE but I felt warm and cozy. Santa Fe is beautiful and very brown.




I sat in a restaurant with my friend Janet who knew all the places to go and what to eat.


Janet tried to get me to order something with the red and green chili, a local specialty, but I wanted the cheesy grits and eggs. When I asked the waiter whether I could get some plain toast with it, he said that the grits dish was a massive amount of carbohydrates and while he didn't look directly in my eyes when he said it, I got the point and declined the toast.


We walked around Santa Fe all morning and into the afternoon. I bought little things for the boys and a beautiful wooden angel for Sophie. I bought some turquoise studs for myself that a round Native American woman had made herself.




We went into the most beautiful Catholic church whose name I can't recall right now, but the art inside was magnificent. Simple and strong --





It was so different than most Catholic cathedrals, and while most of the European ones I've visited are magnificent, there was a certain joyfulness in this one that eluded formality.


I love the use of the word Constantly.

When I opened the door of my room at the inn where we stayed, a painting of the Virgin of Guadelupe greeted me. I loved the flames shooting out of her.


I was going to fib and tell you that there was some sort of significance to that flash of light on her dress, but I didn't see Jesus or Mary there. It's just a flash of light.

We drove from Santa Fe to Albuquerque for our conference (more on that tomorrow or the next day), and the scenery was gorgeous. I stopped to take a picture on the shoulder and pulled behind a minivan. A woman got out of the car with a small mat in her hands. She was dressed in traditional Muslim garb, and when she saw me with a camera she looked hesitant. I smiled and tried to seem friendly as she laid her rug on the asphalt and began what I imagine were prayers toward mecca. New Mexico, home to one of the largest Native American populations isn't called The Land of Enchantment for nothing.


We had time before our meeting in Albuquerque, so we decided to go into one of the new casinos on the way. I've been in casinos before and I actually hate them. They're ugly and profoundly depressing, and this one was as bad as anything in Vegas. There were a lot of old people shuffling around and many had oxygen tanks that they pulled along with them. It was incredibly smoky and while we're talking about all things spiritual, I have to admit that the few times I've gone into a casino, I think about Sodom and Gomorrah. I'm not against gambling or anything and wouldn't assume any sort of moral authority, but seriously.... 

It was my first time actually gambling, though, and we did the slot machines. I told Janet that I consider myself lucky but would only spend $10. This is what I have left.


We did spend two days working on improving the healthcare quality for children with special needs, including those with epilepsy and deafness. I'll tell you about that later.

In the meantime, on the way home I looked out my airplane window, right outside of Los Angeles and saw this.


When I got off the plane, the air was warm and the sun was setting, all pink and glorious in the sky. I love Los Angeles. I really do.

Monday, January 25, 2010

Monday Travels




I'm off to New Mexico and right on time this arrived in my mailbox from Gratefulness.org:


To travel hopefully is better than to arrive.

-- Robert Louis Stevenson

Sunday, January 24, 2010

Fight Like Hell



O.K. So I'm a flip-flopper these days. Just when I'm ready to wrap a white turban around my head like my fellow yogis,



denounce the bullshit that is American politics and the Republican party




and call it a day, I read something that maybe, just sort of, galvanizes me. Now this article isn't inspirational in the way that Buddhist thought is, or even a particular poem (and notice in the photo above, that I, as a boxer, am smiling at my opponent). And it doesn't allay my disgust and mistrust in the state of the oligarchy. But it gives a certain energy and lifts the cloud of taking things too seriously, getting bogged down and forgetting to be mindful. You can read it here.


I'm off to New Mexico tomorrow, anyway. I've mentioned the job I have as the Parent Co-Chair for the National Institute to Improve Children's Healthcare Quality (NICHQ). We've been working for years to improve the quality of and access to healthcare for children with special needs, in this case, epilepsy and deafness. It's difficult and sometimes frustrating work but, above all, it has shown me that the country is filled with those who truly believe that healthcare reform is not a luxury but a necessity, not a commodity but a human right. These people that I work with are behind the scenes, doctors and nurses and academics and administrative staff, literally toiling away at improving the lives of tens of thousands of children with diseases and disabilities. They work in a system that is embarrassingly inefficient yet manage to make incremental changes that make a difference. I might add that the work is funded by the BIG, BAD government that so many in our country villify. The Department of Maternal Child and Health provides the money for the grants that seven states use for the improvement efforts. This is the second collaborative that I've worked on in almost five years and since then, improvements have been ongoing in California, Wisconsin, Washington, Oregon, South Carolina, Mississippi, Massachusetts, New Hampshire, Maine, West Virginia, North Carolina, Florida, Colorado, New Mexico, Nevada, Illinois and New Jersey. The work is slow and sometimes tedious. But it's worthy, and I'm going to keep on doing it.

Switzerland will have to wait, I suppose, its beautiful peaks and valleys and comprehensive healthcare coverage for all, a beacon if our own is snuffed out.

Saturday, January 23, 2010

Saturday Thinking


William Blake


I have to remind myself to let go of all the bad energy, the anger, the clinging, the swearing, the despairing. Frankly, I don't know what I'm talking about half the time, but it sounds good in my head and feels NOT so good in my stomach. I read a couple of conservative bloggers yesterday whose posts made me sick and angry, but I realized, too, that mine probably do the same to them, and if I can go round and round with them, so goes the world.


I read this today and it reminded me of the dangers of dualistic thought -- maybe dangers is not the right word -- it reminded me that everything goes round and round.


We will not have a new worldview as long as people live inside the dualistic mind, because we will always be accusers of others.  Remember the very word “satan” literally means the accuser.  The constant satanic impulse is to try to change others instead of changing ourselves. -- Richard Rohr

Friday, January 22, 2010

Further Ruminations on the State of the Oligarchy




I hope that we shall crush in its birth the aristocracy of our monied corporations which dare already to challenge our government to a trial by strength, and to bid defiance to the laws of our country.


--Thomas Jefferson





Post Number 502




I just now realized that this is my 502nd post! The photo above is comprised of random words from my blog that are scrambled and, I think, artfully displayed. It's from a cool website called Wordle.

 I think I'll use today's post to thank all of you who have read my blog, who have commented, who come back over and over, who sustain me and support me and make me laugh and inspire me.

Thank you!

And today's the last day to delurk yourself if you read the blog and never comment. I mean it's not the last day you can come and read here, but I posted a few days ago that for every lurker who leaves a comment on my blog by Friday, January 22nd, I will donate $1 toward Partners in Health for the victims of the Haitian earthquake.

Humor me on the 502st post and comment.

But if you really, really don't want to, I'll still donate, so no worries there...

Now onward to 1000!

Thursday, January 21, 2010

Tumbleweeds, Homer and Rain


We're having some serious WEATHER right now in Los Angeles -- wind, rain, hail, etc. My good friend D, who I've known since college, told me that as he drove on the freeway tonight in a torrential downpour, an enormous tumbleweed came barreling down the road and passed him. We love to share traffic stories (especially the ones you hear on the radio, the reports of four lanes blocked by mattresses and watch out for the fast lane on the 405 because there appears to be a fistfight happening with spectators, etc.) -- this is Los Angeles and it's crazy anytime but especially nutty during a storm.

I was reading the Sunday paper tonight as the rain pelted down (yeah, I haven't gotten to it and it's Thursday) and got to the book review. After deciding that I need to read Joshua Ferris' new novel The Unnamed, I read an article about a poet named Don Thompson, a largely unknown and obscure poet of the central valley in California. The article was intriguing because the poet is evidently quite distinguished and little published and virtually unknown. He works as a teacher in a local prison and was encouraged early in his life by e.e. cummings. Here's one of his poems, from the chapbook Where We Live, published by Parallel Press in 2009.

I don't know if it's the iteration of Homer or the wild beauty of it on this rainy night, but I really, really like it.

Edward Thomas, Homer, Rain


Who knows how long it takes a raindrop
to make it home from the mud to the clouds.
Those charts in the textbooks with arrows
flowing clockwise, uninterrupted,
don't tell the whole story
anymore than dotted lines on a map
show us the travels of Odysseus.


This is the epic of rain:
not reincarnation, not purgatory,
but something like a thousand years
waiting in line at Disneyland
just to leap from a cloud
and free fall, bursting with joy
against stone or leaf.


Who's to say the rain on my window
didn't thin the blood of a poet
somewhere in France at Easter, 1917.
And who's to say one drop
didn't splash on Homer's tongue
when he lifted his face,
tasting what he'd never see.

Wednesday, January 20, 2010

Learning to Yodel

****UPDATE (I should probably clarify the following post by letting those who don't know already, that The Husband is Swiss and three darling children have Swiss passports -- I didn't just pick Switzerland randomly as a possible alternative country!

Amden, Switzerland - Winter 2007


This morning dawned gray and rainy and it wasn't only the weather that gave me the blues. After dropping Sophie off at school and beginning to attack the pile of paperwork on my desk which includes five statements of benefits from Blue Cross denying one thing or another, I was doing my best to sort of ignore the headlines of the paper, the comments on Facebook thanking Massachusetts and my own rising feelings of anger.

Breathe, I told myself, keep it at bay. There's no use feeling anxiety about things you have absolutely no control over. Breathe.

Thoughts crept in:

Maybe Michael should sell his business and we really do move to Switzerland. He could get a job easily there. The kids would have a blast living there for a while. I could write. Most importantly, we could give up the American rat race and Sophie's healthcare needs would finally be taken care of.


You need to keep on fighting for what is right in your country. Even if you're not proud of it right now, you are American.


Why do you live in a country where people actually argue over giving to the most destitute persons on earth?


It's too much of a strain to live here. I can't keep doing it.


I'd miss my friends. I'd miss my family. I don't speak German.


The Healthcare Reform Bill was a bunch of shitty compromises and it's going to crater because of that. Stand firm with your belief that in a country as wealthy as ours, universal health coverage is the right thing.


To paraphrase my friend Mike, the conservative movement is genius at organizing people to band together against their better interests and consistently aid the top 1/2 of 1% of this country.


We don't live in a democracy anymore. It's an oligarchy.


It's cold in Switzerland, though, and there's lots of snow and I hate snow. And then there's that silly minaret law that the ultra-right passed (any better than the evangelicals here?)


Sophie will get healthcare coverage and respite for the duration of her life in Switzerland.


I was always good at languages.


Those were the thoughts and then I talked on the phone to my friend A in D.C. whose husband works for the FCC and she said that he was happy because the FCC is really helping down in Haiti. And then I realized that my life is good on so many levels and an incredible strain in others. And moving to Switzerland might actually be a good option and I'm blessed and fortunate to even have an option.

And then I saw this and laughed out loud.


1982 Centerfold for Cosmo Magazine


Despite the doom and gloom, this makes me laugh and if you know me, I have one dogged sense of humor and that, folks, is what sustains me.

Delurk for Haiti



I know you're out there -- you readers who come here faithfully and read whatever it is that I'm saying or ranting about or showing or screaming. And I thank you for your readership, because let's face it -- bloggers do like an audience. And I love seeing that there are hundreds of you each day. That astounds me and encourages me and I couldn't even begin to explain what the community has meant to me (and I'm speaking, too, here, to those of you whom I know and love and share so much -- you know who you are!).

There is such a thing as Delurking Day which in blogger parlance means that you're encouraged to come out of the closet and comment. The word delurk is somewhat unsavory, though, and I think I missed the official day, so here's what I'm going to do.

If you delurk with a comment on my blog from now until Friday, January 22, I will give $1 to Partners in Health for relief efforts in Haiti. Partners in Health is the organization started by the amazing Dr. Paul Farmer over twenty years ago.

So delurk yourself, write a comment (you can use a fake name if you're really shy!) and contribute to the Haitian relief efforts! 


( Even though I'd love to know who's out there, I'll be donating anyway!)

Tuesday, January 19, 2010

Knocking Holes


Robert Louis Stevenson with his mother


When I was a child I loved the poet Robert Louis Stevenson and still remember being holed up in my bed with pneumonia, a copy of his A Child's Garden of Verses in my hands. 


I read this over at SecondSister Suaviloquy and loved it so much that I had to post it here. It was heard on an interview on NPR on Martin Luther King day.


It is said that Robert Louis Stevenson was a man who never enjoyed good 
health. He spent a lot of time in his room even as a child. He was always looking out the window. His nurse asked him one day, Robert, what are you doing? He said, I'm watching that old man knock holes in the darkness. She said, what are you talking about?

He would climb up the ladder and light the light, come down, move the ladder to the next pole, climb up, come down, move the ladder. And everywhere he would light a light it appeared to him with his little quick mind that a hole was being knocked in the darkness.

And so I'm suggesting that those of us who have the strength and the ability, we should be knocking holes in the darkness. So, Martin Luther King came to Memphis - it was a dark place to come, but he came and he came knocking holes in the darkness. 

Monday, January 18, 2010

A Tutorial




I write about my daughter's epilepsy a lot, and most of that writing is very personal. Sometimes people email me with specific questions, and I realize that there is very little on this blog that is educational in the specifics of epilepsy. I might have posted once, a long time ago, what you should do if you see someone have a seizure (and I can't find that post), but I don't think I've given many statistics. So this post will be useful, I hope, and a bit dry, but I'll probably manage to put in a few personal bombshells. I hope it's a little shocking.

Here are some statistics:

1% of the general population has epilepsy. That's a heck of a lot of people, no?  You can have a seizure and develop epilepsy at any time in your life. Epilepsy is more common than parkinson's disease, multiple sclerosis and cerebral palsy, combined. That doesn't mean very much, and it certainly doesn't take away the seriousness and tragedy of those other diseases, but a point should be made that the research money allocated toward epilepsy is woefully below that of other, far less common illnesses that affect far fewer people.


Of that 1%, about 70% have good control of their seizures through medication, surgery and/or lifestyle changes including diet.


Over 30% of people with epilepsy struggle to control their epilepsy and are resistant to current medications. That's the population that my Sophie is within and her epilepsy has been refractory to eighteen drugs and the ketogenic diet. She is NOT a candidate for surgery. In fact, infantile spasms, the rare form of epilepsy that Sophie was diagnosed with at three months of age, is still treated in much the same way as it was fifteen years ago. Despite a few new drug advancements for the disorder, the outcome remains quite bleak. That's depressing and frustrating. 


In the almost fifteen years since Sophie was diagnosed we have seen amazing technological developments in our world:

The Internet/World Wide Web
Broadband 
CDs and DVDs
Cell Phones
SmartPhones
Digital Television
Tivo and DVR
The Prius
Etc.


For the past fifteen years, children diagnosed with infantile spasms are treated in relatively the same way as Sophie was -- unsuccessfully. I speak, at least once a month, to parents of children with either newly diagnosed seizure disorders or who have had uncontrolled epilepsy for years. Many of these children are on multiple drugs and are still seizing.

I find this unethical. We have chosen NOT to continue to drug Sophie when those drugs don't work. This is not acceptable to many doctors and to many parents. Fortunately, Sophie doesn't have the type seizure that goes on for "too long," (the type seizure that can cause severe brain damage and death). We have had to balance the two evils: seizures and side effects. We have often chosen seizures.  


Epilepsy in America is as common as breast cancer and kills as many people. I'll type this very, very small because I can be very, very superstitious, but SUDEP (sudden unexplained death in epilepsy patients) is more common in patients whose seizures are not controlled and who are on more than one medication to control those seizures.
                             
Do I sound frustrated? I am.

I work part time with an organization that strives to improve the quality of and access to healthcare for children with special needs, and children with epilepsy are one of our main concerns. These children and their families are legion, and the disease has been neglected for too many years, probably due to stigma and its often grim prognosis. The work this organization does is noble and much progress is being made.

I am also on the board of the Epilepsy Foundation of Greater Los Angeles, and our chapter is doing a lot to improve the quality of life of those who live with epilepsy and their families.

More must be done, though, and awareness is where it all starts.

Saturday, January 16, 2010

Public? Private? Charter?



I'm over at LAMoms Blog, posting about education, economics, goods, services, plumbers and third grade. I'm not kidding.

Click HERE.

Friday, January 15, 2010

Contemplative Prayer



Each morning I get an email in my inbox from Richard Rohr's Center for Action and Contemplation.  I've been thinking so much, of late, about prayer and contemplation, about suffering and compassion. After a week where I managed to get to a yoga class and meditate three times,  but a morning where I held Sophie as she seized, yet remained aware of the sufferings of others (the Sophies in Haiti, for example), I was particularly struck by the lines from today's email:


We should be an illuminated and honest people who have learned how to see reality in depth -- capable of recognizing self-serving “truths” and cultural lies -- what we might call a “wisdom culture” that acts as a leaven in the larger society.


As we will see, the path of honest inner prayer seems to be the only non-reactionary light that can lead us through this darkness.


Without it, most of us will sell out to group pressure and group think, or our responses will indeed be reactionary instead of pure, positive action.


--Father Richard Rohr


I'm going to do my best to try.

Thursday, January 14, 2010

Wow



I feel, a bit, as if I've sullied my blog, particularly the beautiful Haitian proverb that I posted yesterday, by posting this. But perhaps those who still think fondly of the two men excoriated in the video might think differently? Hopefully?

Wednesday, January 13, 2010

When something is incomprehensible


Mountain in St. Marc, Haiti


Dèyè mòn gen mòn.


Beyond mountains, there are more mountains.


-- Haitian proverb

Corner View - Holiday



It's Wednesday and Corner View is back! Started by a terrific blogger, Jane at Spain Daily, Corner View is made up of many bloggers all over the world who post on a particular theme each Wednesday. It's a lot of fun for me to be part of this amazing group of photographers, writers and artists, and I look forward to reading their blogs as well! For more Corner Views, click on Jane's site.

I admit to groaning at the thought of posting Holiday photos -- I just took it all down and am actually loving the peace and quiet post-holiday, but here goes:



A rare dress-up for Christmas Eve mass






No, my children are NOT spoiled Christmas morning -- why do you ask?














Oliver helps Sophie with her gifts.





The Blue Mermaid













Snow (soap flakes) in Los Angeles





Peace from my Corner to Yours in 2010!

Monday, January 11, 2010

Gasped



Who isn't fascinated by the story of Helen Keller and her teacher Annie Sullivan? As a little girl, I watched the movie and read the book or read many versions of Helen Keller's story. I was obsessed with her and everything about her.

A while back, I opened the paper and saw the photo I've copied above and gasped. The photo was previously unknown and was believed to be the oldest photo of Helen Keller in existence -- 120 years old, to be exact (and I guess now it would be 122). That such a fantastic photo of the real Helen Keller, as a girl, existed was exciting enough to a helenophile, but that profile, to me, looks almost identical to Sophie's, especially when she was about eight years old.



I forgot all about it until I started organizing my desk this morning...

Saturday, January 9, 2010

Something I grapple with


Jacob Wrestles with God -Gustave Dore


The same night he arose and took his two wives, his two maids, and his eleven children, and crossed the ford of the Jabbok. He took them and sent them across the stream, and likewise everything that he had. And Jacob was left alone; and a man wrestled with him until the breaking of the day. When the man saw that he did not prevail against Jacob, he touched the hollow of his thigh; and Jacob's thigh was put out of joint as he wrestled with him. Then he said, "Let me go, for the day is breaking." But Jacob said, "I will not let you go, unless you bless me." And he said to him, "What is your name?" And he said, "Jacob." Then he said, "Your name shall no more be called Jacob, but Israel, for you have striven with God and with men, and have prevailed." Then Jacob asked him, "Tell me, I pray, your name." But he said, "Why is it that you ask my name?" And there he blessed him. Genesis:32


I went on a walk the other day with one of my closest friends and at some point during the walk and the talk of husbands and children and life and movies and books and weight and exercise and Sophie, I said something to the effect of how Sophie's life had lifted and enriched mine in ways that I couldn't always articulate. I think I said something like I'm not sure what sort of woman I'd have turned out to be if I hadn't had Sophie and, specifically, the troubles (a phrase I'm especially fond of with all its understatement -- I believe it's how the Irish referred to the Catholic/Protestant issue so I usually say it with a faux Irish accent). I'll say right now that I'm plenty aware of the grappling with identity that comes with motherhood. I've got three children, two who are as typical as can be. But this is a different sort of grappling, a different sort of identity thing that is probably best understood by those who've experienced it or something similar. And what I meant by that is NOT that Sophie's life, her seizure disorder, the fact of her existence has meaning only in and of itself -- that she was sent here by God for a specific purpose and that I have successfully figured that out. I don't believe that Sophie's seizure disorder has any meaning whatsoever. I think bad things happen, all the time, to most people. I don't believe Sophie's life's purpose is to show me or any of my friends or family anything at all.

I believe in the randomness of fate.

I do believe her life has purpose but that purpose is her own.

This is what I grapple with (and please allow me to be presumptuous enough to compare myself to Jacob wrestling the Angel Michael or God or whomever).

Jacob was alone, in the dark, wrestling with God. That's a pretty damn intimate thing to do, to wrestle with one's spirituality, in the dark. and to come out blessed.


Thursday, January 7, 2010

That I, a really, really good speller, would pass the gene down is not a given

A Manifesto, written for Veteran's Day in November and brought home from school today:





Translation:

May the land of America be blessed and to all of the fighters in the U.S.A. They deserve to have a break. The fighters are men and women that fight to protect me and you. They play this song at games. It is sung like this Oh, say can you see by the dawn's and all the rest.

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