Saturday, August 27, 2016

like every lark who lifts his life



Yesterday morning, Sophie picked her cup off the table and,  just like that, began drinking. I'm not sure what happened over the past week, but I really was thinking that the regression was the new normal. I even bought multiple Honey Bear bottles with straws in them on the internets on the advice of another special needs healthcare mother.




Sophie also looked directly into my eyes, and I could swear she said What kind of shit was this past week? 

Then, like the phoenix, she rose up leaving me, a pile of ashes.

The picture above is Sophie with former NFL football player and now medical marijuana spokesperson Eben Britton. Ya'll know what I think of football but -- well -- ummmmm, hmmmmm, yeah. He's a writer and passionate advocate for medical marijuana. This was a Realm of Caring/Faces of Cannabis event with one of my heroes, Ray Mirzabegian spearheading it with the incomparably talented Colorado photographer Nichole Montanez.

She did not take these pictures -- I did, and I was suitably flustered.

Would you like another one?




Sigh.






It's my 53rd birthday today, and my friend Chris sent me this poem, one of her favorites and now one of mine. It's by e.e. cummings




Wednesday, August 24, 2016

Violins and A Sodden Bouquet of Carnations

Horizontal Curl


I'm loathe to tell ya'll about making sure Sophie gets enough to drink and how it gives me agita or even what might be mild anxiety attacks. I don't know why she can't purse her lips and suck on the cup. She's either forgotten how or bruised something or maybe it's the after effects of the eight grand mals or maybe it's the wind. I'm not prone to anxiety attacks, but I suppose an accelerated heartbeat, feeling of doom and shallow breathing constitutes one, as does the constant pricking at the eyes of tears. Sophie has had no more big seizures other than when she woke up this morning, but that one was quite mild and nothing to worry about. I've girded my loins, thrust off the I'm sick of this shit except when I look deep into hers and she is totally saying I'm sick of this shit, so I say, Yes. Me, too. Then I place the violin under my chin and make a grand flourish with the bow before playing us an appropriately plaintive tune.




I can't get this poem by Laura Kasischke out of my head. I have a book of her poetry, but this is a new one. It's in The Kenyon Review which I receive for free because I submitted something to be published and was rejected. The reason why my piece was rejected was because they publish poems like these. I know it's a long one, and I don't know why I am so drawn to it, but maybe it's because there are lines that seem lifted from my own experience, particularly my experiences in the last century even millennium in a small house in a suburb called Sylvan Park in Nashville, Tennessee. I have no idea either why that happens, how a poem or a piece of literature written by a stranger is pulled in tendrils from your own brain and set down in another century to be read on an afternoon when you'd just as soon hear violins.


The Whole

The surgeon peels the man
away from the man
to get a look at the whole
throbbing thing of him. The slick

little change purses, the seaweed. His
featherless birds
moistly dreaming. The rubied globes, but also
the mossy blades and edges. The rotting branches hanging
low with soggy leaves. And then

one velvet tail curled around a pulp-pink stone, right
next to the fetal totalitarians, their shallow breathing. The sticky
eyelids of a forgotten kitten. And that girl at Woodstock — too
young to be there, it seemed — lost

in the rainstorm in the dark among the demons, so that
the faster she ran the faster the tentacles sprang
out of the mud to snag her ankles. Her

skinny thighs, slippery with blood and spit. The rose

bloated in the bowl at the center of the great-aunt's table.
A cockroach crushed beneath the bridegroom's heel.
A pearl fallen off the wedding dress, swallowed by a baby girl.
The stippled button, snipped from the suit coast of the eldest
son in his coffin, pocketed by his brother. Then

the shameful, rubbery secret at the center of all of us, which
for this man long since slipped into the gut of an iridescent
fish (faceless) floating
here now in this thickened ocean between

today's patient's gray-eyed tumor (eyelashed, blushing) and
his liver, mucus-gleaming. The whole of it

just trying to be polite. As when
the in-laws would arrive on Saturday mornings, unannounced, in
their church clothes at one o'clock in the afternoon while we
were still sleeping off the night before. The door

opening very wide ("Hi!") as if none of it
has come as a surprise. Because

nature simply couldn't figure out another way
to make us, frankly, there being
so many things that no one wants to see.
The gallbladder, for instance. The spleen. The

intestines gathered as
a sodden bouquet of carnations some days, and
a toiling nest of shining snakes on other days. Or

the cook in the kitchen pinching the skin off the surface
of the scalded Hollandaise
with his filthy fingernails.

Oh, the waitress knows, and ladles the sauce over
your eggs Benedict anyway. And
the surgeon knows.
Sews you closed.

Laura Kasischke


Monday, August 22, 2016

Seizures and the Full Moon



I realized this morning that I hadn't posted a follow-up to Friday's dire post about Sophie's seizure clusterf*@k. I expressed my gratitude on Facebook toward all those people who sent us such loving and encouraging words, but I neglected to do so here, so thank you, thank you, thank you for buoying me. Sophie hasn't had a day that bad in a couple of years, and I have no idea what prompted it. I have several friends in the seizure world whose kids had particularly difficult days last week and over the weekend, too. We all did the dance that I alluded to in my last post, and we all, in our weak attempts at control, tried to figure out why. 

Was it the full moon? Possibly, as many of us are convinced that full moons exacerbate seizures despite there being no "scientific evidence or correlation." The fact that our kids seize regularly and more violently during full moons is generally reduced to anecdote by the great and almighty Science Community. We of the tiny little mother minds™ are apparently just howling at the moon in between wiping our children's brows, preventing their limbs from banging into furniture as they seize, agonizing over whether or not to administer rectal Valium (because the after-effects are so awful), syringing liquids in them because they've forgotten how to swallow between the seizures and the drugs and weeping on the sides of beds at the goddamn relentless of it all.

So, Sophie is home from school today, recovering. I hope. She is refusing liquids -- or not exactly refusing but rather having difficulty taking them. She reaches for her sippee cup and brings it to her mouth but doesn't seem to remember how to suck out of it or how to swallow other than in gulps. I am, basically, force hydrating her, dropping 1 ml syringes of liquid into her mouth and rubbing her cheeks and throat. Last night at dinner,  I compared myself to the British police force-feeding the Irish Catholics and suffragettes. The boys were horrified. Every now and then, the instinct to purse her lips seems to come back, but then she flings the cup away. I've resorted to looking in her eyes and threatening the hospital and IV liquids if she doesn't get it together. This is, of course, in my mind. I don't actually say it. People love to say that extreme parenting teaches you to not sweat the small stuff. It's been my experience that the small stuff is often what breaks you, and this weird liquid strike has the potential to break me every single moment. OK. I broke and wept this morning after getting 4 ounces into Sophie and wondering for one impossibly long moment whether she had permanently forgotten how to drink and swallow. It's happened before, though, so I'm hoping that she'll regain the skill as the drugs leave her system and things calm down with the waning of the moon.

My friend S who is no stranger to extreme parenting (and far more extreme than I despite her son being less than a third of Sophie's age) gets the grand prize of cheering me up the most.  When I shared that my tiny little mother mindin its dogged attempts to control the situation, believes that the full moon might be the cause, she revealed that her son had had a brief and unusual seizure with the full moon but had never heard of that theory.  Here's a snippet of our texts:




But her best comment -- the one that released me from my angst and made me laugh long and hard was this:





We both agreed that the whole thing is particularly frustrating because we -- well -- love the moon.





I'm a little giddy from the loss of sleep and Force-Feeding of Liquids. Can you tell? Saint Mirtha is here, though, to relieve me, so I'm going out with Oliver. Thank you again for all your love and support. I could never, ever do what I'm doing without it.


Saturday, August 20, 2016

My Tango With The Dark Side



Sophie had a hideous day yesterday and suffered through multiple tonic clonic (grand mal to the uninitiated) seizures. I have no idea what caused the downturn, and so far today she is much better -- basically sleeping off the drugs. I gave her Diastat (rectal valium) and extra cannabis.

Last night I had some full moon thoughts, though, did some dancing with the dark side in the lead until I was bent backward, his hand bruising my hips, my hair and arm trailing the floor.

How much can a person take? They will do nothing but pump her up with drugs in the hospital and to what end? Why is there no one to turn to during these times, a professional that I can trust? When has there ever been a professional that I can trust? 

When released, I cried on the edge of the bed with my head in my hands because I'm sick of this shitty dance.

If the dance were a tango, imagine me quickly turning my head here, swiveling my hips and leading the dark side in another direction.

Sophie can take a lot. She will continue to take it until she can no longer. I have been traumatized over these past couple of decades for good reason and have a unique constitution that is repelled by the practice of traditional medicine. I do not want hospital intervention for my girl. 

I sat on Sophie's bed, brushed the hair from her forehead with my hand and murmured soothing words to her. I told her how much I loved her. I dissociated from the terror by acknowledging and then inviting it to stay. I called a friend and told her that I was afraid.

It's amazing how terror dissipates when it's acknowledged, when I don't push it away.

Yes, I am afraid that Sophie's small body won't be able to take these bad days. Yes, I am afraid that she will die.

Her small body may not take these bad days. She may die.






The thing is, her small body took that bad day. She is very much alive. Not because of my thoughts, of course, but because of the dance, her own dance, the one that I can really not control, even as I dance along, the one that I can only love.



Wednesday, August 17, 2016

First Day of the Last Year




I dropped Sophie off for the first day of her last year at school. I'd like to say that the years have flown by, but they haven't, and I felt choked up as I watched her aides wheel her inside. I don't know if it's sorrow or gratitude prickling at my throat, heavy. Am I weightless or weighed down, is the road straight or does it wind? Abide or endure?



I may lose at any moment through the play of circumstance over which I have no control, anything whatsoever I possess, including those things which are so intimately mine that I consider them as being myself.
Simone Weil 

Tuesday, August 16, 2016

Holland Outliers (a rewrite)

Joshua Tree in a Dress, California, 2016

Truth always rests with the minority, and the minority is always stronger than the majority, because the minority is generally formed by those who really have an opinion, while the strength of a majority is illusory, formed by the gangs who have no opinion — and who, therefore, in the next instant (when it is evident that the minority is the stronger) assume its opinion… while truth again reverts to a new minority.

Soren Kierkegaard




The vaccination posts keep popping up again, faster than I can delete or hide them. Children sent home from school for not being fully vaccinated, cheers! it's about time! the gloat, the confidence. Erasure. When minority voices are made quiet, darkness prevails. 

I'm not going there, the old familiar sickening quickening.

(a re-working of an old post)

We're tribal people, and many moons ago I read a signature piece for the parents of the disabled called Welcome to Holland that I keened toward for about one moon back in the darker days of the last millennium when things were passed mouth to ear, a paper from hand to hand, and then crumpled up as I crumpled, lit it with a match, burned a few animal gods in sacrifice and threw it to the wolves. My tribe left Holland behind and ranges loosely at the borders, howling at every moon whether full and shining or slivered, letting in only cracks. Sophie's summer school teacher sent home a progress report one year, something I'd normally only glance at in scorn because, really, what's the point? Our tribe resists the denial, doesn't welcome false blessings, looks for grace in contrast. Somehow, this small report of A: Produces markedly superior work and E: Excellent citizenship meant something. Under Teacher Comments: A pleasure to have in class!, the exclamation point seemed merciful. I fell back from the tribe for a moment, long-shadowed, the moon's pull, the tide washed over me, outlier.

Alison Piepmeier, A Meteor

Night Sky, Perseid Meteor Showers
Joshua Tree, California
photographer: Carl Jackson


When I drove out to the desert on Thursday with a friend to watch the Perseid meteor showers, I knew that my friend Alison Piepmeier was dying. Alison was a beautiful woman whom I met online many years ago and with whom I spoke several times over the years on the telephone. She was a badass and a kickass professor of women's and gender studies at the College of Charleston. Her delightful blog Every Little Thing chronicled her life as an academic, a lover of Star Wars, a mother to her darling daughter Maybelle and, of late, her struggles with cancer treatment and death and dying. She had an infectious smile. She was working on a book about the high incidence of abortion of fetuses with Down Syndrome and worked passionately to "change the game."  Her daughter Maybelle was the delight of her life, and I think that child will be held with love in the minds and hearts of tens of thousands of people who were fortunate to know her a bit through her mother's writing. Alison appeared in the Extreme Parenting Video Project that I made years ago, her smile brilliant and her hair thick and curly. She was a dogged and passionate advocate for the disadvantaged and the disabled. She wrote a brilliant and moving essay in the final weeks of her life that will tell you everything about what kind of soul she possessed.

She died of a brain tumor in the early hours of Friday morning, surrounded by her husband and family and friends. She was 43 years old.

I saw many meteors on Thursday night and into Friday morning, light shooting across the sky, one after the other, the desert still and vast, implacable. I thought of Alison and her passage from this world to the next, how grateful we were to have her here and how much we will miss her.















Listen to and read these:

Down Syndrome and Equality

Thank You For My Beautiful Life

Sunday, August 14, 2016

The Rescheduling Cannabis Desert

Sophie and I in the desert, 1998, when I didn't realize that it would be another 16 years and as many drugs before we'd find relief from Sophie's seizures


There's been a bit of hullabaloo in the medical marijuana world this past week, so I thought I'd chime in and give ya'll an update. The United States Drug Enforcement Administration announced that it will expand the number of growers of research-grade marijuana, but will not reschedule the drug. In case you've been living under a rock (and that's ok because, frankly, I wish that I lived under a rock in some other galaxy, far far away), marijuana was classified as a Schedule I substance in the last millennium, along with heroin and cocaine. That means the plant is deemed unsafe, highly addictive and of no medicinal value. That also means the process by which universities and other researchers can grow the plant and study it is still severely limited, and I won't go into how frustrating it will continue to be for people who live in states where it's still restricted to have access to the medicine.

Basically, if you're a Sophie living in a state that doesn't have laws making medical marijuana legal for epilepsy, you're screwed and will continue to be so until the plant is rescheduled. I don't feel like telling you all about the U.S. patent on the plant which is in, of all places, conservative Mississippi, but you can read about it on the CNN site or watch Sanjay Gupta's video. 

At risk of turning this post into a rant, I think I'll just do a question and answer kind of thing and then go pour myself a shot of frozen vodka and scream up into the heavens.

1.     What does this mean for Sophie and your family?

Well, not much in terms of access to the oil. We live in California and have relatively easy, albeit expensive access to the oil that has helped her seizures so dramatically for the past 2 1/2 years. We can't travel out of state with the oil, though, or send it anywhere. Thank god we live in California with access to much beauty, but it makes me sad that Sophie never gets to really go anywhere outside the state.

2.       Aren't there some CBD-only laws that are being passed in various state legislatures and even the U.S. Congress? What do you think of those?

Yes, there is much lobbying and ongoing controversy concerning CBD-only laws in various states. I have decided opinions on this and will try to make it short and snappy. Some people deplore CBD-only laws, believing them to be ultimately detrimental to the ongoing efforts to make whole plant medicine legal in every state. Others believe that getting CBD products to those who need it is of paramount importance and that the legislation is just a baby step toward the larger goal of making medical marijuana (including THC) legal for everyone. While I understand the concerns of the former, I'm also acutely aware of the difficulties inherent in lobbying ignorant, biased and very conservative politicians. While we do so, people are literally dying or seizing their lives away with no opportunity to even try cannabis. What I've chosen to do is support CBD-only legislation at the federal level AND continue to yell, shout and write about the need for full, comprehensive whole plant cannabis legalization.

3.       Why do you think cannabis should be legalized in general, including THC products?

Well, I think that can best be explained by Sophie's story. In December of 2014 Sophie was one of the first twenty families in southern California to get off the Charlotte's Web CBD waiting list and took her first dose of cannabis. That product was very high CBD and very low THC. At the time she was also on maximum doses of both Onfi, a powerful benzodiazepine, and Vimpat, a powerful anti-epileptic. She had been on both drugs for nearly eight years, and despite them being DRUG #21 and DRUG #22 that she'd tried, she continued to have as many as five tonic clonic (grand mal) seizures and hundreds of myoclonic clusters A DAY. She had never had a day without seizures in her life. She was nineteen years old.

Within a week of trying the high CBD product, Sophie had her first seizure-free days and within two months, she was going several weeks without a single one. We did not adjust her medication for nearly four months and then began to slowly wean her from the Onfi. What happened over the next several months was a lot of tinkering and adjusting to try to get the best response and the most seizure-free days, even as we began the arduous process of weaning her from one of the most damaging and addictive drugs she's been on. About six months in, we decided that we needed to add in a small amount of THC because we'd heard that some kids with refractory seizures needed it to get better control. That seemed to do the trick, so her regimen was the high CBD product three times a day with a small amount of THC added in at night. 

4.        Where are you now with Sophie's regimen and seizure control?

Sophie has about 90% fewer seizures than she had before she began taking cannabis in late 2014. She will go a few weeks with minimal seizure activity and then have a couple of "bad" days that are dramatically less "bad" than her best days pre-cannabis. She is on approximately 75% less medication, too. She continues to take a high CBD strain called ACDC three times a day at a very low dose (we figured out that she does better at a lower dose) and a bit of straight THC oil at night or as a rescue med on her "bad" days. 

5.         Why do you think the government is so stubborn about rescheduling marijuana? 

You know what? It's so ludicrous, and I'm so sick of it that I'm going to call a spade a spade. I think Big Pharma has everything to do with this clusterf@*k, and that they want the whole pie. I think our legislators -- both right and left -- have been bought off in what we call "politics." I think it's about money when it isn't about plain old ignorance and even stupidity. I don't want to turn this post into a rant, so I'll leave it at that.

6.          Do you think that even recreational marijuana should be legalized?

Absolutely. 

7.          What do you think of Big Pharma studies and the general tone of physicians regarding the need for more research and caution?

I've always had a problem with authority and don't give a damn about what the medical community thinks. I'm not going to apologize for that. I long ago lost faith in Big Pharma and am perfectly aware that I'm unreasonable and biased.

8.           What and who guides you then when you have to make changes in Sophie's regimen?

I trust in my own role as a mother/healer and in the wisdom and experience of many other parents of children like Sophie. I believe in the power of the whole plant, pure and simple. I have worked very hard to channel my frustration in how Sophie and tens of thousands of other children have been treated for decades into confident advocacy for cannabis, but it gets damn difficult sometimes, and I'm not entirely confident that we're going to "win."



Now I'm off to the freezer for that shot of vodka. If you poke your head into your freezer, you might hear my screams.


Thursday, August 11, 2016

Fixing Chariots




Sophie has a wheelchair that we received after about nine months of wrangling with the various agencies and insurance companies. It cost just under $10,000. All the paperwork is in a file that I labeled Sophie's Chariot.  Yesterday, I spent about thirty minutes trying to thread one of the straps back in so that she could be secure. I used tweezers. I fixed the Chariot.

I had an interesting discussion on Facebook the other day on a thread responding to Florida Senator Rubio's assertion that he wouldn't support abortion for those fetuses affected by the Zika virus. Since I've basically weeded out or hidden all my "friends" that have right-wing viewpoints (in the name of sanity during an election year), the comments were predictably liberal-minded with much derision toward Rubio. Given that the man also believes that a fetus should be carried to term even if the woman has been raped or in cases of incest, I was not surprised by his vehement response.  I should make my own assertion here that I am, of course, utterly "pro-choice" and do not believe anyone has the right to tell a woman what to do with her body, including the fetus, should she become pregnant.

Marco Rubio can go f*&k himself before telling me about the sanctity of life.

Where I get squirmy, though, is the talk about aborting children with microcephaly.

This is a post about some squirmy stuff. I don't want to argue and will just present what I'm thinking about when I hear people talk about Zika and microcephaly and abortion, and before there was even knowledge of Zika, these would have been the same thoughts regarding abortion and any sort of disability.

Again, I am decidedly pro-choice and believe unequivocally that it's the woman's right to make decisions regarding her body and that, should she make the decision to have an abortion for whatever reason, she has full and equal access to the procedure with her doctor.


Here are a couple comments from the Facebook thread:


  • So. He's planning on putting through legislation that ensures these children have life-long free medical care, schooling, aides, wheelchairs, dental and all things they will need for the next 50 plus years, RIGHT?
  • In that case, little Marco and the so-called "pro-lifers" should adopt, raise, and continue to support indefinitely each and every one of the severely handicapped children that are born of Zika-infected mothers.



My first thought is how everything -- literally everything -- is reduced to economics -- or how should I say it? -- worth and value. These children, born of women infected with the Zika virus, are not just a great burden to their families but also to society. This kind of reasoning reminds me of how people argue against the death penalty by stating that it's "more expensive to kill people than to house them in jail for a lifetime." Again, I'm just throwing out some of my thoughts here. 

What if we shifted the whole paradigm and asserted the primacy of the vulnerable, how the disabled bring a certain light to the world and evoke the best in the rest of us. I'm not implying that there's a reason for suffering, a plan or some sort of divine imperative. I don't believe in God that way. I believe more in chaos and, perhaps, meaning wrought from it.Sophie is not here to teach me through her seizures and silence, but I am here to learn what it is to truly love.



Here's another comment:

Anybody ever tell these 'interventionists' about the kids that won't be born, because the one they compelled to be born will take the time, energy and finances of the potential kids a couple might have had, were they not over-burdened with the deformed child an abortion could have prevented? Seems to me, there are more potential children condemned to "death" than the fetus the anti-abortionists insist on bringing to term.

Cartoon thought bubble:

Hard as it might be to believe, over the last couple of decades, I've had several people ask me whether I would have aborted Sophie had I known she would have refractory epilepsy and severe developmental disabilities. The hard to believe, for me, is the audacity of the asking, not the answer. I have learned to literally live the questions and not the answers. I have no answers. I've said it before, but I hold opposing thoughts and ideas at once. My hands, you know, are large and strong. When I was pregnant with Henry, I declined an amniocentesis because I already knew that we never know. I was thought a fool by those who advised otherwise. Fools never know. When Sophie was diagnosed, I mourned for what seemed like lifetimes. I mourned the loss of the baby that I thought I had carried and then brought into the world. I thought that she had been replaced by a new baby until I realized that she, Sophie, was always who she was, had been so since spark and stardust and love created her. The mourning never stops, but neither does the love.

Remember hands, how much they carry. It is both terrible burden and incredible honor to care for Sophie. I couldn't do it again and I'd do it again, And not but.


Sunday, August 7, 2016

Notes On Whale Watching




I was literally awestruck on Saturday when I went out on a boat for a seven-hour whale watching tour with some friends off the coast of Ventura. I don't think any amount of writing could do justice to what I saw, so I'll post some notes I took off and on, in-between sunning and rocking and gazing out into the blue. I took over 700 photos, so I'll post a few of my favorites. We saw at least 18 humpback whales, one blue whale, one Minke, multiple sea lions, more than 6,000 dolphins,  countless birds, including several rare species and a bait boil where birds flew around feeding amongst a pod of dolphins and multiple humpbacks. It was wild.








The tell-tale (tail?) stench of whale breath: invisible, fishy, something rotten
The story of Jonah who was swallowed and coughed back up.
Had he displeased God?







On the ocean, my capacity for wonder is as large as the blue whale -- the largest creature on earth.

Memories of sitting with Sophie as a baby under the blue whale in the main lobby of New York's Natural History Museum. Back in the days of constant crisis, the shadowed space below the hanging whale was one of the few where I felt at peace, where Sophie quieted down. We both looked upward in blue light. 

Twenty-one years out, and I'm in the ocean with one.
.
Four breaths and then the tail and then the dive back down. Ten minutes later, four breaths and then the tail and then the dive back down. 
Over and over








Cloud hovers low over the arches and monoliths of Anacapa Island
How does condensation take so many forms and so much emotional weight?




Van Morrison's "Purple Heather" an echo 
A lonely wooden tower, there you go, lassie go











This morning. Gray blue light of dawn bleeding into room. 
Hesitation. The rhythm of what will come is set by passivity. 
I am drawn to patience. Like held breath
like water




The color blue
cerulean
sky into sea
blue bleeds into blue
Does blue bleed? 




So I don't forget
I can contain my desire despite it seeming uncontainable
The rocking of the boat is constant, and I am never sick.
It's like love
the making of it.

The female body as container.
Desire
The space inside that is filled.
The whale tail and the female uterus






Slick as a dolphin
No amount of cliche could contain it
A container for desire







The audacity of the sea lion








The body as water
The body as vessel, as container, as passageway
The grounding of rock and ancient arches 
My tilted sense of wonder










Friday, August 5, 2016

Twisted Fairy Tale



My Italian grandmother walked around the house in her old age and her old age was the only age that I can remember, whimpering. I've written this before, but I carry her in my cells. Pray that I die, she muttered in her thick accent, pray that I die. She fingered rosary beads. True. She was always of old age but not always old. She also pinched the skin on the top of your hand and played a sing-song game whose words I've forgotten as they were in Italian. I knew the Lord's Prayer in Italian, but I've forgotten it. For a moment I forgot the Lord's Prayer in English, and lord knows her meatballs and spaghetti were hallowed. I twist language to avoid what I avoid. It's unbelievable that I still can't deal with Sophie's bad days in a way that I believe I should be dealing after twenty-one years. I leaned over and wiped a drop of drool off the floor, a trail of drops from her bedroom. I had walked her out and down the hall to put her in her chair. I propped a pillow under her fragile elbow so that she didn't bruise her arm. She has tiny bruises on her arms and legs, the skin so fragile over bone. My grandmother was strong in body but looked soft. She carried bags and bags of groceries through the streets of Harlem and up the stairs to the apartment over the firehouse. She had burns along one arm. We were told they were scars from tomato sauce that had spattered while she stirred it as a child in Calabria. She never went to school. She was illiterate. I look soft but am strong in body. I read all day long for a living and because it keeps me alive. I read an article today about a black firefighter in upstate New York whose home was torched and burnt to the ground along with everything in it, including the two family cats. The man, his wife and two children weren't at home and are alive. The arsonist was a racist, a fellow fireman who had written him an ugly note a few days before. Niggers are not allowed to be firefighters. No one wants you in this city. And so forth. What do we do with this information? Who are these people who live amongst us? I feel a whimper at the back of my throat, and it burns. I felt it earlier when I leaned over to wipe the drool off the floor, the trail of drops like crumbs, my grandmother's rosary. I have scars, but you can't see them. Why do I feel fragile, like skin over bone? Why can't the drops of drool be crumbs that I can use to find my way back?

Tuesday, August 2, 2016

Erasure



Where is the outrage? It’s limited, at best (see “No hashtag”). Why? The messages that society sends and accepts again and again form a drumbeat of “better dead than disabled” and “disabled = less than fully human.” Hard to get outraged when you can’t see someone as fully human in the first place.
via Forbes Magazine, Emily Willingham's article This is What Disability Erasure Looks Like 

I know some of you took notice when you read about the guy who slaughtered 19 people and left 26 injured in one of the worst attacks on the disabled in history. The worst, of course, would be the Nazis' extermination of them. That the latest massacre happened on the same day that we here in the United States were "celebrating" the anniversary and progress of the Americans with Disabilities Act (passed in 1990) and collectively freaking out over the circus that is our election season is ironic, at best. At worst, the relative lack of attention to this horror is -- well -- entirely predictable.

Do we know the names of these disabled people who died at the hand of a person who worked there, whose intent was evidently known by police authorities. I don't know who they are. I haven't seen a single photo of any of them, either. According to international newspapers, no names or photos or descriptions of lives were published.

These disabled people were, basically, erased.

I got a lot of reading done during the week I spent in Hilton Head.  I finished Claudia Rankine's remarkable book Citizen: An American Lyric, a collection of essays and prose poetry that is unlike anything that I've ever read and that quite literally blew my brain up in a million bits only to settle down in what is, perhaps, an entirely different formation. It's a book about race and erasure, about resignation and what happens to the body, the body of color, specifically, when it is continually thrown against -- literally and figuratively -- a white culture. The essay about tennis player Serena Williams should be required reading for every literate citizen of this country.

You begin to think, maybe erroneously, that this other kind of anger is really a type of knowledge: the type that both clarifies and disappoints. It responds to insult and attempted erasure simply by asserting presence, and the energy required to present, to react, to assert is accompanied by visceral disappointment: a disappointment in the sense that no amount of visibility will alter the ways in which one is perceived.


I also finished a new novel titled Pond, by Claire-Louise Bennett. It's a strange and haunting piece of fiction that is wildly eccentric, intensely interior and difficult to describe, but I loved it. Here's a passage that I marked immediately, not realizing until later why it resonated so much with me:
I feel quite at a loss for about ten minutes and it's a sensation, I realize, that is not entirely dissimilar to indifference. So, naturally, I handle it rather well.

I thought of both passages immediately when I read Emily Willingham's brutal article This Is What Disability Erasure Looks Like that appeared in Forbes on July 27th.  Read it and come back.


A man prays at a makeshift altar in front of the Tsukui Yamayuri En care centre for the disabled in Sagamihara, Japan.Photo: The Asahi Shimbun


I thought of Rankine and Bennett's passages immediately after reading the Willingham article because of my own experience raising Sophie. If you've been reading this blog for a long time, you know what I'm talking about. Here's what I'm talking about. Every casual gesture of a physician, every failed treatment, every fight with an insurance company, every IEP meeting, every I could never do what you do, or would you have had an abortion if you knew? The what a waste her curls are, aren't they? and she'll never be a model so we won't reset her broken leg, Is this medically necessary and Would you consider putting her in a home? Erasure.

What, exactly, do you not understand about love of your child? No matter.

Anger and the necessary energy to make presence known morphs, eventually, at least for me, into resignation, a seeming indifference, a handling well. I handle well. I handle well. In dreams I am a dragon on the edge of a dark cave, my tail a trail behind me, its scales hard green, an accumulation of years.

Swish.

 

Monday, August 1, 2016

Hilton Hell and Heaven*




It's hard to know where to start when I haven't been on the old blog for over a week. The boys and I were on Hilton Head Island, South Carolina. It was beautiful there, but hot. Oppressively so. I am not so good in the heat. I'm an admitted wimp when it comes to humidity, and I prefer the cold shock of the Pacific to the bathwater of the southern Atlantic. I also hate jellyfish, mosquitos, roaches and the fact that it never cools down, even at night. Did I mention that it was oppressively hot? On the positive side it's always a joy to see the nieces and nephews and my own children running around together, enjoying the beautiful ritual of this summer week that my incredibly generous parents have provided for so many years, and lord have mercy, but they're a bunch of beautiful children, inside and out.



We celebrated Henry's 18th birthday down there. I'm struck speechless that my first son is that old. He's the same preternaturally joyful kid he was on the day he was born. Gratitude for him and his presence on the earth over and over and over.

Cugini on Henry's birthday, only missing Sophie


Now I know you're dying to know whether we watched the Democratic National Convention all together, passing the popcorn and gently jostling one another, respectfully acknowledging our differing viewpoints yet exulting in the fabulous speeches and moving moments.

Um, no.




We're divided as a family, basically, into tribes, and the heads of one of the tribes are essentially the Bosses of the Land, so they determine pretty much everything, and we DON'T TALK AT ALL ABOUT THE DEMOCRATIC CONVENTION OR ABOUT DRUMPF OR CLINTON. I'll have to admit that it's the sanest way to operate, particularly in the oppressive heat of South Carolina. We did make conversation about what was for lunch or dinner or how hot it was or how beautiful the view was or how much we love one another despite not being able to converse about truly substantive things every four years or so. My sister and I resorted to watching the convention on a tiny television from the last millennium in her bedroom. I have no idea for whom the leaders of the other tribe are voting, but I know for sure who they're NOT voting for, and that's the first woman to receive the nomination. While it can be tense every now and then, I did make some sort of crack about how we were being denied our first amendment right to assemble peacefully and watch the dang thing in the living room and actually got a laugh from one of the chiefs of the other tribe.



Anyhoo, as they say.

I'd also like to mention the very large Drumpf sand castle that was built on the beach by a group of very white mid-westerners. Nor will I mention how members of our tribe got into it a bit and were called by the Drumpfers "liberal loons." In fact, they even etched a warning into the sand underneath the tower.

Yikes.

I'm proud to say that some of our tribe actually did knock down the tower later that evening -- or maybe it was just the tide?




I'll also mention that when the boys and I walked off the plane in Savannah, Georgia, we saw this ad, featured prominently in the waiting area:

The welcome ad displayed prominently at the Savannah airport


Hot blonde with great legs despite the camo and really cool boots, out for a little adventure with a killing machine thrown casually over her shoulder. I bet she feels safe as Hilton hell! And ready for some fun! I told the boys that we weren't in Kansas anymore (on second thought, things are probably pretty much the same as far as gun fun in Kansas) and that people are truly more afraid in these parts, even of one another, have strange and mysterious ideas about liberty and feel obliged to not only protect themselves but adventure with guns that have been manufactured solely to kill the maximum number of people as quickly as possible.

Did I mention how hot it was there? And relaxing?





I think that's enough for one day. I still have to tell you about the loggerhead turtles that we saw hatch and migrate to the sea one evening -- truly one of the most exciting and moving experiences of my 52 years on the planet.










*The levity of this post is in no way an entirely accurate representation of my thoughts regarding the election. While I tried to remain calm, cool and collected, I felt disgusted -- enormously so -- by the gun ad in the airport and the fact that middle schoolers would actually erect a sand tower to that man. Plus, I was hot.

Sunday, July 24, 2016

Sunday Sermon From the Church of the Batshit Crazy



I know I've got some readers out there who are doing so. Please tell me how and why you can. You can even do it anonymously on my blog if you're too embarrassed to be honest.


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