7.15.2018

cautiously optimistic

Lately I am feeling cautiously optimistic about the promise of Palmetto Harmony, the new CBD cannabis oil we started giving to Calvin a few weeks ago. We had discontinued a different CBD oil several months ago thinking it might have been exacerbating Calvin's complex partial seizures. But in a slight a panic over more frequent grand mals of late, I remembered hearing years ago that finding the right strain of cannabis can sometimes take a bit of trial and error.

Since Calvin's first dose of Palmetto Harmony, Calvin has consistently slept more soundly and had an easier time of falling asleep. He has also been calmer and is smiling more. The most profound effect I've witnessed was a couple of days ago when he exhibited almost every one of his seizure harbingers—eye poking, extreme agitation, mania, restlessness, dreadful butt rash, completely amped up behavior, repetitive humming, pacing, mad finger-stimming, dropping down, shrieking, warm skin. Suspecting an impeding seizure, I increased his CBD oil, which we give him only at bedtime. Calvin was asleep within half an hour; the seizure never transpired. The next day Calvin was back to baseline and has been a pleasure to be with since.

So, though it is still too soon to tell, I am cautiously optimistic that this new CBD oil is working to calm Calvin's brain and body. Hopefully it will help to reduce his seizures, but if nothing else, at least I can delight in a few days of a compliant, fairly calm, happy child.

With his Gpa last year ... Calvin's looking more like this of late.

7.12.2018

shitshows

Everyone needs something to laugh about, particularly in these days of shameless bigotry, of families being painfully separated, infants "defending" themselves in immigration court, White folks calling police on Black men, women and children for rightfully swimming in pools, barbecuing in parks, entering their own homes, mowing lawns and selling water in their neighborhoods on hot summer days, in these days of a POTUS eroding our alliances while cosying up to tyrants, his administration attacking our clean water, clean air, reproductive rights, human rights, health care, free press, and diminishing our standing in the world as a reasonable, ethical, dependable, faithful nation worthy of respect.

Yes, the cartoon below made me laugh, giving me a brief reprieve from the shitshow going on around us these past eighteen months.

Like politics, life with Calvin has its ups and downs and exacerbating in-betweens. I'll be the first to admit that taking care of him is the most difficult challenge of my life, and it tests me daily. Caring for our tiny teenager who in reality is much like an infant on the verge of walking—he's non verbal, still wears diapers, can't really feed himself, suffers poor balance, has occasional tantrums—has been hard on my mind, body, spirit, and psyche over the years. It turns out, for whatever reason, I'm up for the challenge. But don't tell me that it's because God chose me to be Calvin's parent due to my strength and patience. Don't tell me everything happens for a reason which, if you break down that theory, it means that some divine entity—the likes of which I don't and could never believe in—put Calvin here on Earth in the fucked-up and suffering condition he is in only to teach some twerp like me a lesson; I am not worthy of my son's suffering. No one is. And don't tell me that God doesn't give folks more than they can handle, because my response to that will always be, "if that is true then why do people off themselves?"

Nope. Calvin is very simply here. And I am simply the mom who birthed him. And his brain is messed up because something in nature went awry or simply didn't develop. And I choose to find purpose in the shit that happens to him and to us, in great part because I must've been born an optimist, I believe deeply in the power of gratitude, I am strong, patient and resilient, and I luckily inherited my mother's effervescence and my father's sense of humor and cynicism.

So, world, turn up that shitshow dial to eleven if you must. I—and the rest of us—can take it, even if we're sometimes weary.

7.09.2018

earth's oppressions

A blast of sky presses down on me, humidity's weight lingering in my lungs and limbs. Sweat gathers at the nape of my neck, collects under my breasts and trickles between my ribs. The morning air is sometimes white with moisture, its blades of grass beading up beneath my feet. At times I feel it's hard to breathe.

Plodding along I think of Earth's oppressions, not in terms of weight or mercury, but in time and space and lives: bawling babies hastily taken from their mothers' milk; frightened fatherless toddlers teetering between strangers, on the brink of depression and detachment disorder; refugees fleeing untold dangers crammed into rafts and trucks and tiny, frigid cells awaiting ... what?; young boys trapped in a flooded chamber, monsoons coming, oxygen waning; women and girls enduring, suffering, lamenting the control and abuse of sordid men—some they trusted; Whites calling cops on Blacks who are just minding their own business; truth and virtue under fire by diabolical despots and their cronies, here and abroad.

I hang with my boy Calvin who cannot speak, his monthly seizures holding steady just under ten. For now, he seems happy, is smiling a lot and sleeping well; a week ago, the reverse was true. I've been here before, the place where time and space expands luxuriously only to be compressed by increasing seizures. The new moon is coming, its gravity waxing oppressive.

I think of those stranded boys in Thailand, trapped in a cave, exhausted, feeble, unstable, afraid, by now blind as bats to light. What if one were like mine? He couldn't hold a regulator in his teeth; wouldn't know how to breathe. Couldn't swim or scuba dive, unable to escape the watery tomb alive.

And so, as always, Earth's oppressions lead me into weeping then to gratitude—grateful for my time and place, grateful for my non-verbal, incontinent, legally blind, uncoordinated, intellectually- and physically-disabled, autistic, enigmatic, epileptic child.

Calvin, photo by Michael Kolster

7.03.2018

joy ride

Red-eye flights are aptly named; mine came in this morning at just after seven. I returned from a short trip to Seattle, having stayed up past midnight one-too-many days. It was good to get away, though I had too little time to see everyone I wanted to see, and re-entering the atmosphere that is all-things-Calvin has proved a bit trying, particularly when it is his third day in a row of seizures, humid, and ninety degrees.

My trip was relaxing and invigorating. I spent some time driving around my old suburban digs—the pool where I spent all of my summers, the brand new high school, the house I lived in from the age of two until twenty, which now seems a dwarfed and somewhat dilapidated version of the one I remember, the pond where I used to catch frogs. The place had changed and yet, in ways, had remained remarkably the same.

I dined with dear friends whom I've known most of my life and who have kept in touch with me, noshed on homemade Indian food and pizza. I rented a car and cruised south to my nephew's wedding, met his new bride, sat and shot the shit with my brother Steve whose wit and humor I so appreciate. On Sunday I sipped a sidewalk bourbon at the Pike Place Market, ate roasted octopus and gigante beans in Adirondak chairs on the shores of Lake Union, strolled past sleepy Capital Hill mansions and—one of my trip highlights—rode the ferris wheel on the wharf drinking chilled white wine from a sippy cup. My other nephew and I scored some tasty shawermas on Broadway, satisfying a craving I've had since having left San Francisco seventeen years ago.

And though all that is a distant memory already, I'll still have etched in my mind forever the faces of people I love deeply, and the joy ride I took on a cool summer day in June, Seattle style.


from Christy Shake on Vimeo.

6.29.2018

rule number one: do not obey in advance

I'm away from home having traveled nine hours to attend a wedding. My time is not completely my own, which is why you have not heard from me. I should tell you that Calvin is doing okay and has had some of his best nights of sleep since adding a nighttime dose of Palmetto Harmony CBD oil last week.

When I woke up this morning while the others slept, I read my dear friend Elizabeth Aquino's blog, a moon worn as if it were a shell. She, like I, writes about her disabled child afflicted with severe epilepsy, intermingling her stories of despair, frustration, gratitude, perseverance with more than a smattering of the politics of social justice; she is a kindred spirit.

Her post is so powerful, expedient, and cogent I had to share it here:

Rule Number One: DO NOT OBEY IN ADVANCE
by Elizabeth Aquiino

Sophie got a new wheelchair yesterday, thanks to her private insurance which is governed by the Affordable Care Act's protection of pre-existing conditions and her qualification to receive Medi-Cal which helps to pay for any out-of-pocket expenses. I am filled with gratitude for these things and well aware of my immense privilege, particularly as these things are not afforded to everyone and are now under threat for everyone.


The week after Trump was inaugurated and became the POSPOTUS in 2017, my therapist (I know, LA, and all that stuff) gave me two pieces of paper stapled together, titled Twenty Lessons from the Twentieth Century.* Written by Tim Snyder, an American historian of Central and Eastern Europe and the Holocaust who is a professor at Yale, the list draws on the experience of those who lived before, during and after the rise of Fascism in Germany and Communism in the former Soviet Union. I think we're well past the rise part in Trump's America and into the fascist part, so I'm reviewing the lessons and was struck, especially this morning, by the first one:

Do Not Obey in Advance

Much of the power of authoritarianism is freely given. In times like these, individuals think ahead about what a more repressive government will want, and then start to do it without being asked. You've already done this, haven't you? Stop. Anticipatory obedience teaches authorities what is possible and accelerates unfreedom.


Despite the ease of it (for those who are privileged like myself), caving to despair or cries of how fucked we all are, we just can't. I know that I have "obeyed in advance" many times during my life, have handed power or agency over to not just institutions but to people in my family and even people that I love. Part of that is due to deep cultural influences, to patriarchal systems, to my own apathy or cynicism. It's a slow process toward acknowledgement of that anticipatory obedience, even in my privilege, yet having a child with severe disabilities has pushed me along that path of self-awareness and agency a bit further. 


When I heard yesterday that Justice Kennedy was retiring, handing the POSPOTUS the chance to ensure a draconian legacy of conservatism on the Supreme Court, I did feel despair, particularly about the threat to women's reproductive rights and the Affordable Care Act's protection of those with pre-existing conditions. My despair shows itself in biting humor which isn't funny at all. I imagine Sophie driving a car, proving her "worth" in lieu of getting "free hand-outs" through Medi-Cal, yet unable to get insurance to pay for the drugs and treatment of her life long epilepsy. I imagine her getting raped by some free enterprise private contractor in an institution for the handicapped and not able to have an abortion because it will be illegal. I crack sick jokes because it helps me to cope and perhaps jerks people out of their malaise and into action. 


Here's the thing.  I am thinking that we're entirely not fucked, that we're actually in a fight and that we have to stay in it. We have to stay awake. We can't succumb to despair. We can't obey in advance.


It will be me, maybe, actually driving that car with Sophie in it and any woman or women who needs to go to a state that still guarantees their reproductive freedom.** Sophie is very quiet and capable of holding great secrets. I am very loud.


*  You can easily look up the lessons, but I typed them out on the bloHERE
**Here's a list of things you can do if or when Roe v Wade is overturned.


Photo by Elizabeth Aquino

6.24.2018

palmetto harmony

This morning it looks like we made it through another of what friends who read the blog often call a rough patch.

In the wake of Calvin's second grand mal seizure Friday—the first one being only one of a few that have happened while at school—I gave him an extra dose of my homemade THCA oil hoping to avoid a third fit. As is typical after a grand mal, he fell back to sleep promptly, but then rose half an hour later quite restless. Our kid was completely wired for hours, slapping the wall, banging his head and perseverating—finger stimming, hyperventilating, humming—like mad. Over five hours later, he was still at it. Despite my exhaustion stemming from Calvin's previous night's migraine-type episode, plus the cumulative effects of a decade or more of sleep deprivation, I racked my foggy brain for some remedy to ease his agitation and misery so that we could all get some rest.

In an epiphany of sorts, I remembered an unopened bottle of Palmetto Harmony CBD cannabis oil that its maker had sent to me several months ago. We had taken Calvin off of his former CBD oil at the first of the year because we thought it might be the source of some of Calvin's complex partial seizures. I hadn't switched to the Palmetto Harmony CBD because I was waiting for them to make Calvin a CBDA oil instead. I remembered, too, when first researching cannabis oil nearly six years ago, hearing that finding the right strain of cannabis can sometimes take a bit, or a lot, of trial and error. I thought to myself, perhaps a different CBD oil could work to help reduce Calvin's seizures.

I was fairly certain that giving Calvin the Palmetto Harmony oil wouldn't hurt him; he had taken CBD oil for years with no disastrous effects. So I crept downstairs, took the bottle from the fridge and drew up half a milligram of the clear, amber oil. Fifteen minutes after giving it to my wild kid he was sound asleep.

Regrettably, the oil did not prevent Calvin from having a third grand mal a few hours later, though I had given him a tiny dose. Nevertheless, while in his darkened room yesterday watching him rest and recover from the effects of the seizures, the lack of sleep and the rectal Valium we used to stop the seizures from continuing, I did a bit of strategizing in my head.

Though I had hoped our next move would be to try a CBDA oil from Palmetto Harmony's maker, life got in the way of its making and it is not available yet. And though there are several new drugs on the market, I am loathe to try another pharmaceutical antiepieptic because of Calvin's past resistance to so many, and because of their scary side effects. So yesterday morning, I contacted Harmony's mother, Janel, who makes the CBD oil which has helped so many children have fewer seizures, some who have achieved seizure freedom. She kindly and promptly answered a litany of my questions including how the oil is extracted, why she thinks her method is superior, and what strains she uses, then she forwarded me the cannabinoid and terpene lab results. Last night I gave Calvin his first of what will be a regular nightly dose of Palmetto Harmony CBD oil to see how it affects his seizures, sleep and mood.

At midnight Calvin sat up and banged the bed. It was unclear if he was having a partial seizure, but since they are common after a grand mal, I gave him another dose of the Palmetto Harmony oil and a few minutes later he yawned and fell back to sleep.

This morning he seems to be nearly back to the little turkey we know and love.

Beginning any new treatment for Calvin is scary, but I have vowed not to make—or balk at—any decision strictly based on my fears. And from what I know about cannabis, I think the possible benefits to Calvin far outweigh the risks. Suffice to say I'm cautiously optimistic and hoping this new CBD oil could be the silver bullet that I've been searching for over twelve years, one that my husband insists does not exist.

As in everything, I'll keep you posted. Until then, and as always, cross your fingers and knock on wood.

6.22.2018

longest day

The longest day of the year was followed by one of the longest nights of the year for Calvin and for me and Michael.

A few hours after I had come home, giddy from attending my dear friend Lauren's annual summer solstice party, Calvin began to whimper and stir. I got up to give him his second dose of THCA cannabis oil having earlier expected an impending seizure. Within half an hour he was beginning to writhe, rub his head and cry. I gave him a tylenol, then when that didn't work, I managed to get him to swallow an ibuprofen. Despite my efforts to assuage his pain, he continued to thrash and cry and scream. In bed next to me, he pulled my hair, scratched my neck, pushed my throat, whacked my head, kicked my legs again and again and again. Somehow, I was able to maintain my composure as he flailed for two-and-a-half hours, promising him in whispers and kisses that he'd feel better soon and that I wouldn't leave him. 

It was then that I again thought about the Central American child refugees separated from their parents, some of them infants, others toddlers, left crying alone with no consolation, children who don't understand or speak English, don't understand why they've been marshaled away from their parents by strangers, children who might never be reunited with their momas and papas for weeks, months, years—if ever—the damage and suffering being done in haste by a president and his administration without a plan of action in place.

Yesterday, I heard an audio of young detained children, one of them crying "Papa!" repeatedly, until his/her little voice became hoarse. Hearing their cries made me weep.

Finally this morning, my boy calmed, though never went back to sleep. We eventually got him up, fed him some breakfast, packed his lunch and sent him off for his last day of school. A few hours after we had put him on the bus I got the dreaded call while paying for a special cake I was about to bring to his support staff at his school: Calvin was having a grand mal seizure. His ed tech's voice was trembling as she described how he had vomited during the seizure, fearing he might aspirate. I told them that I'd be there soon. 

On my way I stopped by home and quickly filled two syringes with cannabis oil. Thankfully, the junior high school is less than a mile away, so I was able to give him the oil within minutes of his seizure, a tactic I take aiming to prevent further seizures.

As Calvin slept, his teacher and aides sat with me in the dim Zen Den, named for its bean bag chair and strands of calm yellow lights strung on the walls. As we watched my boy sleep, I told them of past seizures, most notably the forty-five-minute grand mal he had when he was just two. I described how Michael and I had thought he might die that time since none of the emergency meds had appeared to be working, but that it had finally stopped when we began kissing on him.

After almost an hour's sleep on a spongy floor mat, Calvin stirred and awoke. I gave him his lunchtime Keppra, chasing it with a couple of sips of water, then picked him up and carried him out to the car to go home.

Now, as I sit at my desk writing, I can watch him spin in his industrial-strength johnny-jump-up. He is poking his eye, humming, and bubbling up foamy drool. My gut tells me he isn't out of the woods yet, and I wonder if I'll ever get my seizure-free boy back from where these sinister meds and fits took him years ago.

Then I think again of those innocent migrant children separated from their parents, every day their longest day, every night too, their lives likely ruined by the mistreatment this neighboring and prosperous nation has subjected them to. I wonder about the hundreds who have epilepsy (nearly one in one-hundred of us do), wonder how they will fare without their meds, wonder who will hold them when they seize, wipe the blood trickling out of their mouths from bitten tongues, wonder who will whisper away their fear, their pain and tears. I wonder how the reckless president sleeps at night, he who has told his citizenry legions upon legions of lies, the worst of which, perhaps, denies the real grief and suffering these children are having to endure. The potus (the guy is not deserving of all caps) may not sleep well, but he doesn't sleep on a mat or a cot with a mylar sheet under banks of cold florescent tubes in a cavernous, cement-floored, fenced-in holding cell. But I bet he sleeps alone.

And as I wrap this up, my sweet innocent boy rolls into another grand mal, but in the safety and love of his mother's arms in a place we call home.

Calvin after a seizure