Thoughts of the Day and a Photo of Marcello***

When I opened my back door this morning to let the dog out, I was surprised to feel that the impossible heat had broken. I could almost hear the cogs of my little brain working, freed from the apocalyptic stasis of the past few days. I might even cook tonight.

Wasn't it just a short time ago that the NFL thought that the admission of gay players into its hallowed, manly ranks would bring it down? I hear the tinny sounds of dirt hitting a coffin, a grave being dug, and I can't help but think hmmmmmmm.

My friend Jeneva Stone, the brilliant writer, poet, advocate and mother of a severely disabled young man, wrote a post on her blog the other day that is living inside me. You should hop over and read it at Busily Seeking 2.0.  Oh, it has nothing to do with football.

Jeneva's post made me sit up in my own bed where I'd been lying, yellow wallpaper in my mind. I am strengthened, galvanized. I was also made whole by the incredibly generous favor from my friend Cara. I can't reveal what it was, but it came along with a tub of Lalicious Sugar Kiss Extraordinary Whipped Sugar Scrub that I dragged myself out of bed for, took a shower and slathered all over my body. When I slipped into bed, I was reminded, again, of how small the measures are that one must take to feel replenished.

Absent anything interesting to binge on as far as television, I've been on a bit of a reading frenzy. I finished Anthony Doerr's All the Light We Cannot See, and am making my delighted way through We Are Not Ourselves by Matthew Thomas. Next up is Tana French's In the Woods, a genre that I generally don't like but recommended by my friend Vesuvius whose taste is impeccable and for whom, despite our age difference, I aspire to be more like. This morning I discovered newly crowned MacArthur poet Terrance Hayes' poetry and can't wait to read more of it.

Christy Shake, a beautiful writer and advocate, my soul sister in Maine, has been making THCa oil to give to her son Calvin whose seizure disorder is as devastating as Sophie's. She wrote a letter to her doctors this morning that ya'll should read, too. Here it is: Dear Docs: Calvin and Cannabis.

It's amazing what a bit of cool air, literature, poetry, feminism, NFL-bashing and freedom from seizures can do to one's little brain, isn't it?








***I'm going to see La Dolce Vita tonight on the big screen for the first time since college. I am so excited I can hardly bear it.

Sunset Over Ralph's

dedicated to Robert as he recovers and Jeneva as she forges on

When I moved to Los Angeles sixteen years ago, I thought the name Ralph's for a grocery store chain was ridiculous, and I guess I still do. Yesterday -- or maybe it was a couple of days ago, I snapped yet another photo of the sky over Ralph's parking lot, and as I scrolled through those photos in my phone, I thought about how the ordinary and the extraordinary are right here, right now, nearly every moment of every day. Then I thought about the ability to hold contrary thoughts and feelings, how that ability is honed over the years when your life experiences dictate it, and how that ability is so difficult to articulate. I spoke at length this afternoon with a friend who is helping me to get my "book" up and off the shelf where it's languished for years. Our conversation ranged from the intensely personal to pure editorial business, but at some point in it, I tried to convey how my life is at once horrible and perfectly all right. I meant -- or mean -- to say that it's not horrible. It's fine. It's fine even being horrible. When Sophie was a tiny baby, newly diagnosed with her hideous seizure disorder, when we were just stepping onto the path of a very different world, I was taken to an Orthodox Jewish holy man somewhere in the Bronx. I rode in a limo up to the hospital where this holy man was convalescing after suffering a stroke. I walked down a hallway, clutching Sophie to me (she was not even three months old), escorted by a few bearded men and led into a room where a man sat in a wheelchair, his head resting on his shoulder. He had the most piercing eyes I had ever seen, and I had to almost look away. He said a few things to me in Hebrew, and the men who had escorted me translated them to me, words that made me stop cold as they were things that no one, no one at all, should have known in that room. He lay his hand on the baby for a blessing or something, and he looked up at me with his eyes (his head on his shoulder) and he said, She will be all right. Your baby is all right. He gave me an ordinary little medal with a Hebrew symbol on it and told me to pin it to her clothes, near her skin. I did that every day for years, I think, and now I don't remember when I took it off or what I did with it. It doesn't matter, though, because despite everything, Sophie was going to be, she was all right. She is all right, and so am I. Ralph's is a ridiculous name for a grocery store chain, but damn, sunsets sure look as good over Ralph's as they do anywhere else.

Day Two: Gratitude Posting

Yesterday, I joined my friend Jeneva who had posted on Facebook that she was going to salvage the last six days of the second worst year of her life with gratitude. I told her that I'd do it with her on yesterday's post.

I'm grateful today for the card that Ms. Moon sent me of the Airstream trailer on the beach that now graces my blog. That card appeared at just the right moment and is a testament to those people in my life who truly know me and who share their lives and allow me to share mine.

Now, who'll join me in the Airstream and gratitude?


1. I'm grateful for my strong and healthy constitution.
2. I'm grateful for the card that Ms. Moon sent me of the Airstream trailer on the beach that now graces my blog and that is testament to our friendship.

On looking for a job, unease, and more Jeneva Stone

So, I've been waking every morning with a vague sense of dread, and it's not the usual will Sophie have a lot of seizures today? Will Sophie be alive this morning? Will Oliver be in a good mood or bite my head off? Will Henry make it through high school without sex, drugs and rock and roll? or Will I make it at all, today? Yes, that's the usual, a million worrisome thoughts that generally disappear by the time my eyelids are fully raised and my cheery morning self slips into my body. Lately, though my dread has continued on into the morning, and that's because I'm looking for a job. The work that I've been doing for many years has come to an end -- no more federal dollars for the projects that I've participated in, and the non-profit I am currently under contract with has little to no steady work. The problem with getting just any job is that I have very little flexibility and need flexibility. I have to be ready to deal with Sophie if she has a bad day and can't go to school. I have to make at least $20 an hour to break even and pay for childcare for her to begin with, and then there's Oliver who is at a time in his life where he needs me to be with him, particularly after school. Given the amount of stress in our home -- some of it bloggable and some of it not -- and the ongoing struggles that siblings of the disabled face, I feel that it's paramount that I am readily available for my boys. While I'm perfectly aware that we're fortunate to have one decent income and have had some help from my parents and my up to now steady part time work, I'm also perfectly aware of what I might have earned, might have contributed, might have been doing if my first baby hadn't developed this devastating disorder and been so disabled by it. Let's face it: I'm the CEO of Sophie, Inc., and it's a volunteer position that has reaped many, many rewards but it has also made it extremely difficult to do anything else.

Better minds have grappled with this and are better able to articulate it, and one of these is my friend, the writer Jeneva Stone. Here's an excerpt of her most recent thoughts with a link following to the complete post.

This bit of data changed my self-narrative. I had been grateful and continue to be grateful for the medical assistance Robert receives and the nursing care for which we're now eligible. But had these supports been available sooner, I might have been able to earn more money, pay more taxes, spend more and stimulate the economy, participate at my child's school, and otherwise enrich my community. 

 Instead, I had been cowering and avoiding reading the comment threads that follow news stories about children with disabilities--comments that blather on about families and choices, children who are burdens to society, people who don't want to pay for the needs of disabled children because their parents chose to have them and foist them on the rest of us, people who are concerned about their tax dollars being wasted. How to respond to this? Whine about paying for the incarceration of children some of you out there abandoned and/or failed to parent properly, or your ER costs because you won't pay for health insurance? Hmmm. 

But now I know that by being a responsible parent, I saved taxpayers $7 million dollars at tremendous cost to my family's financial well being. I feel good about that. I've made a real contribution to society, even if unrecognized. Now, please, stop talking trash about me, my kid and my family. 

Jeneva Stone, from Busily Seeking 2.0: The Costs of Caregiving 

Read the rest of it, here. 

Reader, if you are the primary caregiver of a disabled child or children, how do you balance work (the paying kind) with your duties (the non-paying kind) and if you don't balance them, what does it look like? If you are not the primary caregiver but, rather, an innocent bystander, I'm interested to know what you think about this dilemma.

LARB, Heather McHugh, Jeneva Stone and Getting through a Saturday

Heather McHugh, Butchart Gardens, Victoria, Canada 2013

Imagination makes me large. The constraints of duty make me small.

Jeneva Stone

This morning, the telephone rang too early and the voice of my Saturday caregiver gave me the death knell words that she wouldn't be able to come in today to take care of Sophie. I confess to irritation. I confess to snapping. I confess to internal dramatics -- the I can't go on and I hate my life and This is only the beginning -- before I pulled myself together and got out of bed with a big, grandmotherly sigh (Pray that I die, my Italian grandmother used to mutter, while fingering her rosary beads. Pray that I die). When I later opened my email and saw that my friend, the great caregiver and writer Jeneva Burroughs Stone, had an essay published in the Los Angeles Review of Books, and that this essay was a tribute to Heather McHugh, the extraordinary poet who gifted me with my recent respite week in Victoria -- well -- I took it as a sign. While my literal week away in Canada, when I was taken care of with exquisite attention to detail  -- good food, beautiful nature, the ocean, cultural excursions, solitude, real rest and sleep, massage, baths, brilliant conversation, (the only thing lacking, sex) -- is receding, the memory of it is clear, and that clarity is a glass door that leads to possibility. Because of Heather and Caregifted, I now know that respite and the concomitant return to my self is possible, my self is indeed intact. That glass door might be closed to me today, and I might walk around fingering my rosary, pray that I die, but I can certainly look through it. I'm also going to make a peach pie.

Read Jeneva's essay here.

A Dog with Two Bones

That would be me, of late, the first bone being Ann Coulter's use of the word retard and the discussion that cropped up around it, the second being the looming threat of a Romney win and his promised repeal of the Affordable Care Act.

Some dogs chew more effectively on their bones, though, and my friend and fellow writer, Jeneva Stone is one of the big dogs. She re-posted one of her best this morning on Facebook, and I think it's not only required reading, it's imperative reading. I so wish the 24 people on my Facebook page who've checked LIKE on Mitt Romney's page would read Jeneva's essay. I wish many of my relatives would read Jeneva's essay. I hope that those of you indifferent to the Affordable Care Act will read Jeneva's essay and ponder on it a bit.

Here's an excerpt, but please read the entire, brilliant and impassioned plea.

A few years ago, I read most of T.R. Reid's book, The Healing of America, in which he suggests that universal healthcare arose in other countries through some sense of national commonality or other community sensibility: the Brits pulled together after WWII, the Germans rallied round the idea of the common German man (or person, I suppose), and I don't recall what drove the other countries' reasoning. Fairness, I suppose. Cost savings. Desire to improve quality of life. You know, all that reasonable stuff.
Well, not here. In his first chapter, Reid says, "Americans generally recognize now that our nation's health care system has become excessively expensive, ineffective, and unjust." Note that word "unjust." Read the status update above again. "Unjust" because, apparently, that's the way we like it. In his conclusion, Reid notes that "the American reliance on private, for-profit health insurance companies for the bulk of medical coverage is in accord with American values of capitalism and freedom."
As Americans, we value not only capitalism and freedom, we also value merit and "hard work." Because our health insurance system developed as a jobs benefit, we have become accustomed to associating access to health care with the ability to hold a job. People who can't hold jobs don't deserve "benefits" like health care. Because they are lazy, apparently.
Or at least that's the way Americans tend to think when we think at all. Most of the time we're too busy being independent pioneers and starting our own businesses and raising our children according each to her own individual belief that we really don't have time to think. Or when we have time to think we mostly think that Americans who whine about health care are lazy or have government jobs, otherwise known as "sucking on the government teat." Or some less polite spelling. I see that in comment threads all the time, which my husband constantly tells me to stop reading.

As my little sister says, I hear you barking, big dog.

Chuck (Yeager) and Jeneva

Chuck Yeager

My friend and fellow parent of a child with disabilities, Jeneva of Busily Seeking...Continual Change is really one of the best, if not the best writer out there in the big, wide world. She's wickedly clever, a poet and essayist in a grand tradition. Recently back from a prestigious writer colony where she worked on an upcoming book, she has begun blogging again, and I'm just riveted, as usual, to what she's writing about and how she does it. Here's a snippet to whet your appetite:

I remember writing last year about the Blackbird, the plane built to fly three times the speed of sound, the plane whose turns had to be planned 200-300 miles in advance. And how that made me think of Phoebe Snow and her disabled daughter and the risks we're forced to take, the flights we buckle ourselves in for without understanding how powerful the ride will be.

That is life with Robert, flying faster than my skills allow, hoping I can make the machine accomplish what it was meant to do: fly faster than the insurance companies can head us off, out-race ungenerous predictions of Robert's future, outrun this insane political climate in which ingratiating smiling jackasses simultaneously invoke American exceptionalism and poor-mouth the possibility of a shared effort and responsibility in accomplishing what this nation needs to do for us all--to prove the point, that is, that we are an exceptional and unique people (if that is indeed, the hegemonic and ultimately obnoxious point we'd like to make). I am, frankly, worried that under either a Romney or an Obama administration we will see Medicare vouchers tossed casually to people like my son. Because asking Romney to fly this sleek beautiful craft we call the United State of America is like strapping a black lab on top of the cockpit and Obama doesn't seem to want to get into the cockpit at all right now (hey, what gives with his no-show in Wisconsin?).

Is your appetite whetted? Go read the rest of that and more.

Quote of the Day

LBJ [Lyndon Baines Johnson] wasn't nice and he didn't care about consensus. It's time for a mean, vindictive SOB on the Dem side.


-- my friend Jeneva on her Facebook page

It's not acceptable

Along with Robert Rummel-Hudson's brilliant piece on it, and my friend Jeneva's recent blog posts, HERE and HERE, the television series Glee is getting in on the campaign to end the use of the word retard. I have friends who still use the word around me -- apologetically, of course -- but they just don't seem to get it. Maybe this will help:

SOTU IEP

If you'd like to read an amazing, unorthodox observation of last night's State of the Union Address and how it pertains -- or doesn't -- to the world of children with disabilities, click


HERE. Jeneva is one of the best writers that I know of on any subject relating to disability.