Wednesday, January 17, 2018

VNS: Very Nerve-Wracking Shit or Virtually No Science*





Blind belief in authority is the greatest enemy of truth.

Albert Einstein



Back in the dark days of the last century -- let's say, 1999.

Sophie attended a wonderful preschool over at UCLA. There were two kids in her class who also suffered from refractory seizures. The two kids were just a couple of years older than Sophie, and their mamas were rocking brave and powerful. When they heard about a new medical implant device called the Vagal Nerve Stimulator, or VNS, they researched it and talked to their neurologists about it and ended up flying to Ohio, I recall, where the company that had created the device, Cyberonics, was implanting it. I remember that not many children had gotten the device yet, but it looked promising, and we in the Refractory Epilepsy World were  quite used to having treatments thrown at us that were, if not experimental, than approved for use in adults or whose mechanism of action is unknown. I'm only telling you this part because I want you to know how long I've known about the VNS -- since its earliest use, even -- and how this whole thing that we call the treatment of refractory epilepsy works.

We are strong and brave and desperate people.

I learned over the years that while the VNS could be helpful, the efficacy rate wasn't that great (the usual 33% noting "improvement" statistic) and, combined with the possible side effects, I never felt any compelling reason to try it on Sophie. I think I was quite sick of the whole shebang by the time it came around, but not quite at the point where I vowed to never try a new drug unless Jesus Christ offered it to me.  I never had a good feeling about the device, never really spoke to anyone who had gotten it (and I knew A LOT of people who got it) and was glad to have done so. I was probably also overwhelmed and lazy about it, too. I heard some horror stories, but there are horror stories for literally every single epilepsy treatment, including the ketogenic diet (which was a horror story for us, too).

Oh, wait.

There is one epilepsy treatment that I've never heard a horror story about, and that's cannabis, but that's another post.

Not a single neurology appointment passed without mention of the VNS. I'm dead serious. I laughed off or declined the VNS suggestion every single time it was trundled out by both beloved and barely tolerated neurologists over the twenty or so years that device had been around. Most recently, I learned that Sophie's old neurologist, whom I used to call The Neurologist before I fired her, has been paid by the company that manufactures the VNS which was an explanation, I guess, for why she suggested it in every single appointment we had with her. Honestly, if you go over to the right side bar and search for the VNS, it'll come up numerous times as part of my conversation with The Neurologist.

These folks are throwing darts.

Try this.

Try this.

Try this.

Where am I headed?

I was also going to tell you about my oft-irrational but actually hard-won and some would say earned distrust of the Medical Industry (emphasis on the word industry, so don't jump in here with your exclamations of all the good and wonderful caregivers in the medical world), particularly when it comes to the authority of the CDC, the almighty FDA and other Powers That Be. I had a bit of a tiff over on Facebook (like a fly to shit) about the flu vaccine. I object to the mainstream media pushing vaccination policy as a morality play. You know what I'm talking about, and I'm not going to belabor it here. Some woman with whom I was engaged in this ridiculous Facebook discussion finally had the last word with a patronizing Okey Dokey, and I let it go. Because, you know, Science is infallible and The Powers That Be are to be trusted, and if you don't you're anti-science and a crazy person.

Wait. Where was I headed? I'm off track.

So, this is where I was headed:

Are Implanted Medical Devices Creating 'A Danger Within Us'?

If you can't listen to the whole segment, read or at least skim the transcript because it's mind-blowing.

Especially the VNS and epilepsy part.











* or the Vagal Nerve Stimulator




Tuesday, January 16, 2018

Re-Cap



I sort of panicked when I logged in to the old blog and saw that I hadn't written a post in over a week. I don't know what's happening to me, but I'm finding it difficult to get the words down and out. I feel a sort of pressure to write well here -- to write something meaningful, to exercise the muscle for the offline writing, but that takes so much out of me. I used to come here and just gab on some days, and I kind of miss that. Do you? I feel that we have a whole lot of gab to deal with nearly every single moment in the clusterfuck that is our country right now. Why should I add to it?

Here's some gab: Henry was home for nearly a month and is already gone and back to college. It was wonderful to have him home and weird, to tell you the truth. It was like he never left. The fighting with his brother, the piles of clothes on his floor, the empty cereal bowls and crusty spoons left out, the boxers on the floor of the bathroom -- shall I go on? But left he did indeed -- back in August and now again, last week. I actually remember what that experience was like -- to leave for college and then to come home. To have your parents still -- your parents. I cringe at how I probably was insufferable then. Not that Henry was insufferable -- to the contrary. There's a certain amount of angst, though, that comes with the age. We live in weird times and seem so much closer to our children than we were with our own parents. At least I think.

In other news, I did a reading on Sunday with a couple of dear writer friends. We were part of Diane McDaniel's Backyard Literary Salon and read from works-in-progress. I had done a podcast with Diane a few months ago, and she invited the incomparable Chris Rice and Tanya Ward Goodman (who also did podcasts with Diane) to read, too, along with her own writing. We had a really great turn-out of about sixty people, got over our jitters and stood up there and rocked it. I think the others would agree that it was glorious. There's something awesome about expressing yourself in amazing company -- I felt galvanized to keep at it -- to finish up MGDB*.

I so rarely like to post photos of myself all alone, but the inimitable Carl Jackson, Bird Photographer Extraordinaire and love of my life (!) took these and I actually like them. I'm trying to shed some vanity in 2018 and get over my snaggle tooth, my chins and roundnesses. I'm trying to consume less and create more.

Hold me to it.













*My Goddamn Book

Monday, January 8, 2018

Tiny Little Mother MInd™ Report



Sophie walked down the street today -- nearly the whole block -- and back to our house, leaning only lightly on my arm. She hasn't walked that far in months, and I'm going to say that it's because she has been taking CBDA for over a month (since her last hospitalization), and I've reduced her Onfi again. She's now down about 50% from the amount she was taking last year at this time, and we're going to keep on going.

The backdrop to this is, of course, the recent roll-back of Obama-era marijuana rules, a "return to the rule of law" according to Attorney General of the Disunited States of America Jeff Sessions who is, in my tiny little mother mind,™ one of the biggest PsOS now running the country. He is correct that the federal rule of law maintains that marijuana is classified as a Schedule 1 substance and is of no medicinal benefit with that designation. Reader, I'm not going to write about this all over again. You can put medical marijuana or cannabis into the search engine over there on my righthand side-bar and pull up dozens of posts that I've written over the last five years or so.

What I am going to tell you about tonight is the SIT-U-AH-SI-ON we here in California face now that our state has passed a bill legalizing recreational marijuana.

Check this out:

Here's the thing. Sophie's medicine will be taxed at 34.5%. We will save 9.5% in taxes on her medicine if we make a trip to the Medical Marijuana Program in Baldwin Park, CA to get her a Medical Marijuana Identification Card (as opposed to just the regular doctor's recommendation), but we'll still be paying a 20% tax on her medicine each time we make a purchase. To put that into perspective, consider that the pharmaceuticals that have poisoned her for more than two decades are tax-free purchases. With legalization in California, cannabis is now subject to so many regulations involving licensing and shipping that we're sort of scrambling with shortages and access to products.

What does this mean? I imagine you're wondering, isn't making marijuana legal a good thing? Isn't that what we've been fighting for and working our asses off to get? Won't it be a wonderful thing to fill up the California coffers with cash?

Sigh.

Honestly, I don't think the California legislators or the general population that voted to make recreational marijuana legal give a flying foo-foo about cannabis as medicine. I imagine that most don't even believe the claims of medical cannabis patients or even experts. I had sort of a PTSD response to that tax chart the other day, when Dr. Bonni showed it to me. It reminded me of this drug Sophie was on back in the clueless days of the 20th century when I was desperate enough to try anything that The Neurologists suggested. The drug was called Topamax, approved for migraines in adult patients in late 1996,  but we gave it a whirl. Sophie quickly became, literally, anorexic as well as that neurologist-generated euphemism called irritable (meaning psychotic screaming all hours of the day). I'm only telling you this story because I can't tell you how many times I heard about people with migraines using it successfully and staying on it for extended periods of time because they loved the weight loss factor! Maybe only the seizure folks out there reading this will get what I'm saying, understand why I kind of broke out into a sweat when I looked at that tax chart. The tiny little mother mind™ is disturbed as well that after giving one mighty fine speech last night at an awards show, Oprah Winfrey is being extolled as a presidential contender.

Holy moley. This is where we are now?

Many do care, I guess, about cannabis medicine being affordable and accessible to everyone, but many don't. I imagine those legislators, with a few exceptions, just buckled to the Powers That Be, with dollar signs lighting their asses, and that's not a cynical thought. It's borne of experience. The whole shebang is a clusterfuck of gargantuan proportion.

Honestly, my tiny little mother mind™ is stumped.




Friday, January 5, 2018

Anger and Scythes

Illustrator Micah Caudle, seen on Pediatric Cannabis Support


I'm no stranger to anger and have perfected the art of the Tongue Scythe over a lifetime and particularly during the last 23 years.  During this time of Terrible America,* when dinosaurs run shit, as my friend Allison Ray Benavides noted today, my anger, exhausting itself, is inexhaustible.

Attorney General Jeff Sessions announced today that he would be rolling back the Obama Administration's "hands-off" marijuana federal guidelines. You can read about it anywhere on the internets, and the good jesus lord knows I've talked enough about cannabis medicine for the past five years that even the tiniest of your tiny little mother minds™ knows that it's a plant that not only improves lives but also saves lives. You also know that many of us have been working our asses off as activists to make this medicine accessible to everyone in this country, that we've been fighting ignorance and stupidity and greed and power and have made incredible progress. 

Jefferson Beauregard Sessions, a dripping moniker for a man who I could cut to pieces with my tongue.

Cue anger and the scythe.





We can all sit around and throw out the reasons why the AG has made this announcement today:

  1. Jeff Sessions is a racist who has a vested interest in the Profit Prison business. Generations of men -- primarily African-American -- are incarcerated in these prisons.
  2. Big Pharma wanting the whole damn pie, working their tentacles around literally every single aspect of the cannabis industry, including the government
  3. Jeff Sessions is a willfully ignorant fool who has never bothered to read anything of scientific value about cannabis, is unaware still that cannabis is not a gateway drug and has no interest in the lives of tens of thousands of people who are helped by it as medicine
  4. It's a great diversion from the other shit going down
  5. It's a great way to make the big liberal states squirm
but it's probably much simpler than any conspiracy theory. Jeff Sessions and the POSPOTUS and the majority of the Republican party are hell-bent on undoing everything that the Obama administration did just because they can. 

Where does it end? When does it stop?  I'm going to keep raising my voice in anger and frustration but also with honesty and truth and compassion. I'm raising my voice in anger against the lying, greedy motherfuckers who are running this country into the ground and against those who support them, even still.

You know who you are.

Shame on you.


#RESIST









* The name Terrible America is the poet Rebecca Loudon's genius




Monday, January 1, 2018

Bring it On


Happy New Year, stalwart Readers!

It's as good a day as any to post a couple photos of Sophie, the source, the inspiration, for so much of my years, my art, my life.

I hesitate -- as always -- to jinx it, for isn't it the height of egotism to imagine that we have any hand beyond the obvious in the course of events even as we emphatically insist that we do?

Sophie is well. She hasn't had any seizures to speak of since we got back from the hospital. She's incredibly alert and responsive, although she still can't walk well and has lost a lot of her motor (both fine and gross) planning abilities. There's no miracle here, I don't imagine, or even conspiracies of the gods. There is the reduction of Onfi that I began again the day after we got back from the hospital, and a resolve on my part that is quite literally pulled up out of the deepest and darkest recesses of my being where fear masks mystery. There is the addition of CBDA that Dr. Bonni suggested* when I appealed to her to help, again. And again she helped and I leapt into the unknown and it seems that Sophie is responding to the cannabinoid.

What is CBDA? Cannabidiolic acid is a chemical compound found in the resin glands, or trichomes, of raw cannabis plants. "Raw" means unheated and untreated. It is fresh flower and leaves taken directly from the plant. It's the precursor to CBD. Sophie takes it in tincture form, a tiny, tiny amount, along with the CBD and ACDC that is part of her daily cannabis medicine regime.

This is what Dr. Bonni told me:

There are only a few studies of CBDA and of course none in humans (seriously, this has got to change), but it appears to be a "key" for the 5-HT1A receptor, one of our serotonin receptors. Studies show potent anti-inflammatory effects by blocking COX-2 enzyme that produces inflammatory compounds and anti-nausea/vomiting effects through 5-HT1A receptor. CBDA also blocked a certain breast cancer cell from migrating by blocking chemical signals sent by the cancer cells. Interestingly, the 5-HT1A receptor when stimulated can affect the vagus nerve. Maybe it is working for seizures as a natural vagal stimulator? Based on what we know 5-HT1A receptors do, CBDA as an activator of this receptor, should be anti-anxiety, anti-depressant, reduce fatigue, decrease appetite, decrease blood pressure and more -- maybe we all need to juice this plant with our kale!



I don't know about ya'll, but I'm going to consume less in 2018 and create more. I hope to be more patient with darkness, to not despair and be more grateful for light, not take it for granted because both are ephemeral.

Bring on 2018, Readers!

Happy New Year!












* If you haven't yet, order Dr. Bonni Goldstein's book Cannabis Revealed. It's an excellent resource for all things related to cannabis medicine. Disclosure: I get a small percentage of the proceeds as I helped Dr. Bonni with the stories of her patients.

Friday, December 29, 2017

Riding Ferris Wheels With Men

Sunset with Ferris Wheel in Distance


I rode a ferris wheel with the man I loved in the parking lot of a strip mall somewhere in Nashville, Tennessee.  It was the last century. It was the last millennium. The air was still dense with humidity even after the sun sank,  a pale disc that had hung baleful in a colorless sky for months. The Chinese restaurant where we ate beforehand was dark and cold. We ordered hot and sour soup and shredded garlic pork that came with rice. We read our fortunes. Men trip not on mountains, they trip on molehills. I know I threw my head back later and laughed into the sky, my hair damp on my neck, drops of sweat in the small of my back, our fingers entwined, legs dangling over the parking lot far below. I couldn't bear to look down. The bench creaked when we shifted. He always made me laugh. Did we marry later that summer? Did I betray him less than two years later?

That dizzy dancing way you feel.


Men watch football and they watch baseball. They watch basketball. When they aren't in the kitchen, men watch cars going round hairpin bends in foreign countries. The sisters of men watch football, too, and they watch basketball and crack nuts in their new teeth, crunch like the bodies on the screens. The girlfriends of men watch football in their team's jerseys, screaming at home on the couch or in sports bars, lunging toward screens, so many screams. I'm a girlfriend of a man who watches football and who watches basketball, but I don't watch. I can't bear to watch.


I was delighted to find myself swept upwards and downwards at such speed. But the wheel turned round so rapidly that a Greek who was sitting near me couldn’t bear it any longer, and shouted out “Soni! Soni!” (enough! enough!)

Pietro Della Valle, a Roman traveller visiting Constantinople during a Ramadan festival in 1615, riding what was known as a "pleasure wheel"



Sunday, December 24, 2017

Merry Christmas Eve Resistors!



I tossed and turned last night and dreamt of moths. No anxiety dream, though, as I went to bed reading about moths. They build scaffolding, web-like things, lurk in dark closets burrowing into grains and stained clothing. They've been flying around our house like they own it. I've done the clean out the cupboards and throw away the open boxes, spray down the shelves with vinegar. I dislike their papery wings, their longing for water and light.


I figure baking and writing go hand in hand.** I've baked ten gingerbread forest cakes and am working on my fourth coconut cake this morning. My cottage industry gig, Everyone Needs Cake,™ has helped to fund Christmas this year. If there's a grosser phrase than help to fund Christmas, write it down in the comments because what's grosser than Consumer Christmas? My tiny men-children and daughter will reap the benefits of my returning to my pastry roots, and so has my writing. I wasn't writing at all the last few months, not so much paralyzed as overwhelmed and disgusted by the meaninglessness of all of it. Not just my writing, but the whole full catastrophe of Terrible America, fueled by the POSPOTUS* and his band of billionaires and Eddie Munster and The Turtle and all the rest of the Kochacracy (that's you, Susan Collins, and Murkowski, too, with the selling off of the Alaskan Wildlife Refuge to oil).



Anyway.

The writing and the baking go hand in hand, here in the gingerbread forest with confectioner's sugar snow, papery moth wings, and coconut clouds on the pale blue dot of home in the vast galaxy around it.

Merry Christmas Eve, resistors!





#RESIST




















*Piece of Shit President of the United States. Yeah, I know it's Christmas Eve and all is hallowed, but the acronym still stands.

** No moth infestation in the products used for Everyone Needs Cake™ -- just in my dreams.

Saturday, December 23, 2017

The Things We Carry

The view of the aftermath of the SpaceX launch last night

We carry empty syringes, sticky acrid sweet on our fingers later brushed on lips, inadvertent reminders, the yellow-gray soaked-through diaper balled up, the navy blue sleep pants with the red stripe at the cuffs, soaked in the seat, the home-stitched sheet-covered pad that she lay on, her socks and the sippee cup of juice left at the bedside. We carry these things down the hall, through a life, to let them go, but first we veer off into the bedroom and open the back door where the dog has been scratching and barking impatient to get back inside








The Coming of Light

Even this late it happens:
the coming of love, the coming of light.
You wake and the candles are lit as if by themselves,
stars gather, dreams pour into your pillows,
sending up warm bouquets of air.
Even this late the bones of the body shine
and tomorrow's dust flares into breath.

Mark Strand

Thursday, December 21, 2017

White Elephants




Last night, the wind was whipping around the Los Angeles streets, cold for these parts. We had been at a white elephant party, a silly affair with beloved friends. Sophie has been good. She can't walk too well but she's seizure-free for the last ten days or so and is preternaturally alert.  Maybe even more but who's counting? I weaned her a bit more from the benzo, so who knows when the withdrawal seizures will kick in. I have also added CBDA to her regimen of cannabis medicine. Maybe she'll never have another seizure and live happily ever after. The boys helped me to bring her in from the car, and maybe it was a let-down from the party and maybe it was how difficult it is to maneuver her around (I mean really difficult despite her weighing only 72 pounds), but one of them had her and one of them worked on hauling the wheelchair from the back of the car and I fumbled with the white elephants and Sophie's bag and then the alarm and the door, and I heard Oliver say Hey Henry aren't you glad to be back from college? and there was rue in his voice and maybe it was the fuckery of the day, and maybe it was the wind but it gave me a jolt and everything everything that I am and made was wrapped in rue for as long as it took me to disarm the alarm and usher them into the house.

Listen to all, plucking a feather from every passing goose but follow no one absolutely, goes a Chinese proverb. 


Wednesday, December 20, 2017

Smashing the Plutocracy



I'm not saying anything else about What Happened Today in Terrible America, other than the plutocrats have successfully passed their tax scam on the backs of the vulnerable, bending over backwards with their proverbial asses for the ruling members of the Kochacracy.

I'm an angry caregiver and mother who knows only a bit about a certain kind of struggle but enough to respond.

Here's a statement from The Arc, an organization whose mission is to promote and protect the rights and dignity of persons with cognitive and intellectual disabilities.



The Arc Responds to Senate Passage of the Tax Cuts and Jobs Act “Each vote in favor of this bill was a vote against constituents with disabilities”

Washington, DC – The Arc released the following statement in response to Senate passage of the Tax Cuts and Jobs Act:
“Today both chambers of Congress rushed to pass an irresponsible tax plan. By reducing revenue by at least $1.5 trillion, the Tax Cuts and Jobs Act increases the pressure to cut Medicaid and other programs that are critical to the lives of people with intellectual and developmental disabilities. Each vote in favor of this bill was a vote against constituents with disabilities and sets the wheels in motion to quite possibly go back in time to an era when people with disabilities had little opportunity to live a life of their choosing, in the community.
“The Tax Cuts and Jobs Act was crafted behind closed doors and the final draft of this bill was only released publicly on Friday. The rush by the Senate to pass this bill mere hours after the House of Representatives vote makes it clear that the architects of this bill were trying to hide something from the American public.
“This year the disability rights community has endured ongoing Congressional attacks that could have jeopardized the health and well-being of individuals with intellectual and developmental disabilities. And now, thanks to the enormous revenue losses that will be created by this bill, we must prepare to protect critical programs like Medicaid which will likely be on the chopping block in 2018. We are grateful to the Members of Congress who stood up for their constituents with disabilities by opposing this bill and we look to them as our greatest allies as our fight continues. While this bill must return to the House of Representatives once more, it is expected to be signed into law. Passage of this bill will not change the resolve of The Arc’s network. As we have shown time and time again, we are a force to be reckoned with. We will remain active in our opposition to attacks on the basic rights and health of people with disabilities and their families,” said Peter Berns, CEO, The Arc.


In these dark times, when each bit of news is more debilitating than the last, when those of us who have fought lifetimes to not just keep our children alive but to maintain their dignity in the face of a culture that would deem them less than human -- well -- the only thing that helps is to keep going and not give up, to be angry and to be brave in showing that anger by continuing the work to improve this goddamn country.

You can get involved by supporting the Arc's activities here. When citizens help to protect the rights and lives of their country's most vulnerable, they are a great people and members of a great country. I really believe that otherwise they are damned, slaves to something rotten.

Tuesday, December 19, 2017

This Is Still A Blog



For how could one express in words those emotions of the body?

Virginia Woolf, To the Lighthouse



I would like to be the Milky Way, star-stretched and caught by your eye, a lens made vigorous by my streak of starlight. Beheld. I would like to be that bird, hover point, my beak just above the water, the moment your eye blinks the shutter my shudder which is either from your shot, captured, or from the expectation of flight and freedom.


Wednesday, December 13, 2017

What I'm Reading

Me reading, 1974

this interview, again, with Claudia Rankine by David Ulin in The Paris Review, Winter 2016:

Rankine:

I think people forget that white people are just people, and that we're all together inside a system that scripts and constructs not just behavior but imagination.

Interviewer:

The imagination first, don't you think? The imagination dictates the behavior.

Rankine:

Right. Ours is a structural and institutional problem. It's complicated because of the vast amount of privilege white people are allotted inside the system, but nonetheless we are a society, and if people are walking around feeling fearful based on imagination, an imagination put in place by a white-supremacist understanding of the world, that's a problem for everyone.





If you haven't read Rankine's book Citizen, you should order it right now and read it.

Monday, December 11, 2017

Christmas-Time Caregiving Extravaganza

Hint: This isn't Sophie. Read on.
Suspense, right?

Sophie has been home from the hospital for a few days, but we're still recovering from the latest We Don't Know What's Wrong With Your Daughter But She Doesn't Have Pneumonia And This Will Cost Approximately $125,347, Part of Which Will Pay For The Care She Received At This Particular Medical Establishment But Mostly Will Go Toward Padding the Pockets of The Plutocracy or Terrible America.*

Here's Sophie in her nest:



Here's me, eating a spoonful of lemon curd, left-over from an order for a Gingerbread Forest Cake with Lemon Curd.**



Oliver had surgery this morning on his finger. He had a benign bone cyst that needed to be removed, so we rose earlier than the sun this morning and made our way to Santa Monica where the nice receptionist charged us $934.56 for THE DEPOSIT, and the nice Anesthesiologist and the nice Orthopedist and the nicest Nurses prepped Oliver for the surgery. He woke in the Recovery Area quite nicely, and in the car on the way home waxed rhapsodic about how his former fears for anything medical had disappeared and I often overthink stuff and am so glad to release these fears and thoughts. Honestly, Readers, it was like the usual fabulous Big O, without the EDGE. I'm contemplating a nice propofol drip for all of us.

Here he is in his nest:

His cheeks are not that full. He's just eating a bagel and watching something dreadful on Netflix.

In lieu of propofol, I'm continuing to eat spoonfuls of lemon curd.

















*Terrible America is an apt expression coined by the great Rebecca L, poet extraordinaire. I think we can safely say it is a Terrible America that is run by a POSPOTUS and a repugnant political party that is actively supporting its sexual predator in chief as well as a pedophile Christian judge running for Senator of Alabama.

**Everyone Needs Cake™ is my new gig. I make cakes for people. I use the money I make to support the Medical Industrial Complex. Please help me to use it for shoes or make-up or something. I'm getting old and would love this really large cozy blanket I saw on the Johnny Was website.


Wednesday, December 6, 2017

The Grace of Caregiving



I'm typing this from Sophie's hospital room in Santa Monica where we arrived yesterday early afternoon after a visit to the pediatrician turned into a ride in an ambulance with Sophie struggling to breathe and a possible diagnosis of pneumonia.

Here's the good news: She doesn't have pneumonia.

Here's more good news: The care she received from the pediatrician, from the paramedics and all the ER docs and nurses as well as those attending her in the hospital has been impeccable. I just finished speaking with her attending doctor who stopped the oxygen and is refraining from giving her any more antibiotics as she is absolutely certain that there is no sign of infection. We might even get to go home later today or this evening.

Here's the bad news: This is the second time that Sophie has gotten into trouble with the increased secretions that are a side effect of the benzodiazepine that she's been taking for the last decade -- let's face it -- her entire life, more or less. Coupled with her reduced motor ability, she doesn't have the same capacity to clear the secretions and is probably aspirating more often than not. SO, I've been in touch with her neurologist and her regular doctor to tackle the problem. We are talking mechanized vests, oxygen for home and perhaps a palliative doctor. For those of you who might gasp at the word palliative, it's not the end-of-life kind of care but rather the kind of care that improves life quality as much as possible when you're dealing with a chronic condition. The fabulous attending physician is going to give me a referral to one, so we'll see how it all plays out.

It's been a hard few days. Ok. It's been a hard few weeks. Ok. It's been a hard few months. Ok. It's been a hard few years. Ok. It's been a hard couple of decades. Sophie is as resilient as hell, and that gives me strength. You know that I don't believe in an instrumental god that is directing the show, that is making things happen for good and for bad. My supplications are not directed toward that sort of help, and while I appreciate the prayers of others as good intentions, they do not comfort me nor do I believe they change the course of events. I am hard-pressed to even describe the incredible lifting of weight and sorrow and darkness from my mind and heart. When it happens it seems miraculous. I imagine it to be a kind of collective unconscious -- the love directed our way from family, from friends and those who come into and out of our lives -- a love that is in turn reflected outward.

I don't know why I am able to hold incredible sorrow and even despair along with joy and optimism, but I think it has something to do with what I call grace.

I feel much gratitude for what I believe is the imposition of grace, bestowed on me by Sophie and the years of caregiving, the relinquishing of false notions of control and illusion. Does that make sense?

As I've typed, Sophie's had several large seizures. It's not easy. Grace has nothing to do with being cured or even being "normal." I know next to nothing in the end, nor do the doctors, nor do the prayers or supplicants. Bad things happen all the time to very, very good people. Death is a certainty for all of us, and suffering, at some point in our lives, if not all, is as well. Grace has everything to do with healing, though, and when it collides with love -- well -- we're good. We're healed.


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