5.22.2018

poor little messed-up child

Minutes ago, Calvin had his third grand mal seizure within sixteen hours. It was the first daytime grand mal in months, if not far longer. He had one just after falling asleep last night and then woke to another at four-thirty a.m. He's been crying all morning, his source of misery assumed though unknown. The only thing I feel okay about is that this third seizure occurred while he was napping rather than while he was awake, something the THCA cannabis oil seems to have prevented for years. It would seem he is getting sick again, having just recovered from a nasty cold that is going around.

He is in bed right now. I write this while sitting on top of his changing table with the shade drawn, listening to Baby Mozart, and wonder if he is going through a growth spurt and has outgrown his Keppra dose. I wonder if he needs extra THCA at night. I wonder if now is the time to try the CBDA cannabis oil that was made with him in mind. I wonder if he is still suffering from benzodiazepine withdrawal.

I'm grateful that Calvin's partial complex seizures have virtually disappeared these past couple of months, but it seems as though some of them have been replaced with grand mals; Calvin has had six or seven grand mal seizures in each of the past two months or so. Most folks will tell you that a single seizure is one too many.

For several years I've dreaded Calvin turning fourteen; I know too many parents who have lost children with epilepsy around that age—parents of Kevin, Matthew, Tyler, Kellie, Cyndimae. I wonder if Calvin might be the next to expire, the result of pneumonia, a prolonged seizure or perhaps SUDEP: Sudden Unexplained Death in Epilepsy.

For now, though, I'll hold Calvin's face in my hands, his body in my arms. I'll sop him up since we can never know what tomorrow might bring. I'll hold my breath and hope he doesn't have any more seizures for awhile. But I remain afraid, watchful, exhausted, despondent. My sweet impish boy. My poor little messed-up child.

5.19.2018

coping

For years my son Calvin woke up every morning crying. There was no consoling him, and he'd wail for an hour, sometimes more. I guessed that his misery had to do with the high doses of three anticonvulsant drugs he was taking, one of them being a dreaded benzodiazepine. I imagined they gave him raging headaches. His distress was exasperating, disturbing, worrying and terribly sad. I'd go to sleep each night trying to forget what I knew I'd wake up to the next morning.

This past week, I visited four social studies classes at Calvin's junior high school to speak about disability and difference, to tell the students about Calvin and to answer their questions about him and epilepsy. A thoughtful, curious, dark-haired boy in the front row wondered how I coped. I told him and his classmates that I have an amazing husband who does all of the cooking every single night, and that he is a good enough chef he could open an excellent restaurant. I added that I try to take naps, that writing has saved me, and that our beloved friends and community support us in various ways tangibly and emotionally.

What I think I may have forgotten to mention is my love for gardening, which draws me outside in all kinds of weather and is most glorious in the early morning and early evening hours when the light casts long shadows over the lawn.

Since just before Calvin was born I've ripped out several straggly shrubs and planted scores of others, many of them gifted to me, including several dwarf conifers and small trees. Most of them, however, are flowering rhododendrons and azaleas which remind me of my youth. I made over a ratty, neglected part of the yard back by the screen porch that Michael built, putting in some stone paths. I revived two perennial gardens that had succumbed to grass and weeds, then added a third, edging the larger ones with low rock borders. I limbed-up some huge sickly spruce trees, restoring them, then planted an understory of large and leggy rhodies, scattering forget-me-nots amongst them.

The shrubs are beginning to grow and mature, and as they do I dig up ones that are becoming crowded and relocate them or gift them to friends. Thankfully, most of them survive my thirst for control, but not all.

This morning, the day after Calvin suffered a grand mal, was one of those dewy, gorgeous mornings I'm so grateful for, and more so having yesterday mowed the lawn, as that seems to make everything else pop.

Considering our son's circumstance, I think I'm coping well, but I should mention that he doesn't wake up crying anymore—hasn't for years—which feels like a cure-all in itself.

click on any photo to enlarge.








5.17.2018

difference in an insular world

A sharp girl in the front row asked me how long Calvin's longest seizure was. She and some of her classmates gasped when I told them it lasted for forty-five minutes. I went on to describe how, because the emergency medications meant to stop the seizure hadn't appeared to be working, my husband and I had thought our son might die. Calvin was two years old. As I panned the classroom, what I saw looking back at me were fresh, young faces wrought with deep concern and empathy.

The sixth graders' other questions were varied, thoughtful and many, curious minds a sign of intelligence:

What was Calvin's first word?

Does anyone else in your family have epilepsy?

Will Calvin ever be able to have a job?

Does Calvin have any siblings?

Who helps you take care of Calvin and do you have a job?

How many kinds of seizures are there?

How do you make a seizure stop?

Will Calvin ever grow out of his epilepsy?

How does Calvin communicate?

I had come to talk to the students about disability and difference, and to answer their questions about Calvin and his epilepsy since he can't do so for himself. When I spoke about cannabis, telling the students how the oil I make from the herb has virtually eliminated Calvin's daytime grand mals while also helping him better endure and complete a four-year-long benzodiazepine withdrawal, one student asked me why marijuana is federally illegal.

There was not sufficient time left in the social studies class to go into much detail, so I summarized by saying that marijuana was outlawed a long time ago (in the 1930s) because of greed and racism. Had I time to explore the nuance I'd have mentioned the corrupt government officials who leveraged fear and racism to justify making marijuana illegal. I would have said that cannabis remains illegal because these same forces are still in play.

I wish I'd had time to delve deeper into marijuana's history and tell them the truth about the deceitful, racist head of the Bureau of Narcotics, Harry Anslinger. I wish I'd been able to tell them about the pressure and collusion from DuPont and Hearst who feared hemp as a rival to their plastics and paper. I wish I'd been able to explain how wrong the War on Drugs is, how hard and unjust it has always been for People of Color and their communities, how criminal it is for our government to falsely insist that cannabis is as dangerous as heroin, claiming it possesses no medicinal properties, while simultaneously holding a patent on cannabis for its neuroprotective and anti-inflammatory properties. I wish I could have told them that the worst people in government and the private prison industry are hell bent on locking up folks—particularly minorities—for low-level drug offenses like simple marijuana possession, and keeping the millions wrongfully languishing behind bars from getting out.

Though I was unable to school the students on the history of cannabis, I hope I may have planted a seed in their brains about an amazing medicinal herb that has gotten a bad rap. I hope, too, that I got them thinking about disability and difference. Perhaps I inspired them to go a step beyond tolerance—because tolerance is not good enough—by befriending and embracing those like Calvin and others who may look, act, sound, dress, speak, live, love and worship differently from themselves. I hope I sparked inside them the desire to stick up for the bullied and disenfranchised and to openly and unabashedly condemn the cruel, unjust and hateful whether they be adults or children.

The night before my presentations, Michael and I watched the film Son of Saul. From its first scene I was gripped and unsettled, witnessing a grim cinematic account of the inner workings of Holocaust concentration camps. I'd seen horrific photographs and films taken of the camps when I visited the Holocaust Museum in New York last May. In my twenties, while backpacking solo through Europe for seven months, I'd visited Dachau. And yet, scenes of Jewish men scrubbing the human mess that awashed the gas chamber floor nauseated me. Still, I clenched my teeth and fixed my eyes on the screen, feeling I should bear witness to their suffering, my own discomfort but a whiff of what Holocaust victims and their families endured. Had the sixth graders already studied the Holocaust I would have told them that children like Calvin were some of the first scapegoats to be rounded up and killed by the Nazis because they were deemed a stain on the Aryan race.

Frighteningly, this world is still rife with this kind of hate and savagery, our own nation led by an insecure man who incites fear, denigrates and scapegoats immigrants, dehumanizing them by calling them animals, a man who maligns People of Color, shows contempt for the poor, mocks the disabled, and enacts policies harmful to every kind of human save the straight, White, wealthy few.

For an hour I spoke to each class of sixth graders fielding their thoughtful questions, their faces gazing at photographs of my son on a dry-eraser board. At the end of the second session, a girl with dark braids and features which I took to be a beautiful blend of races, hopped off of her chair and embraced me. She hadn't asked me any questions, but it seemed she grasped my message, which was one of trust, love, worth and understanding of difference in an insular world.

Photo by Michael Kolster

5.14.2018

one world

Calvin's epilepsy—the suffering it causes, the challenges it creates, the sorrow it provokes—often gives me pause to consider bigger things, incites me to contemplate life and all of its complexities from different perspectives. Sometimes I peer from the inside looking out, at others I gaze from the outside in.

Today, when lamenting the killing of so many Palestinians who were protesting the opening of the US embassy in Jerusalem—their sacred city for thousands of years along with Christians and Jews—and what that signals, I recall and embrace these wise quotes regarding war and peace on this shared home we call Earth.

Alex Churney, A Milky Way Shadow at Loch Ard Gorge 
How vast those Orbs must be, and how inconsiderable this Earth, the Theatre upon which all our mighty Designs, all our Navigations, and all our Wars are transacted, is when compared to them. A very fit consideration, and matter of Reflection, for those Kings and Princes who sacrifice the Lives of so many People, only to flatter their Ambition in being Masters of some pitiful corner of this small Spot.

—Christiaan Huygens, The Immense Distance Between the Sun and the Planets, 1698


Associated Press


When you're finally up at the moon looking back on earth, all those differences and nationalistic traits are pretty well going to blend, and you're going to get a concept that maybe this really is one world and why the hell can't we learn to live together like decent people.

—Frank Borman, Apollo 8, December 1968


The world looks marvelous from up here, so peaceful, so wonderful and so fragile. Everybody, all of us down there, not only in Israel, have to keep it clean and good.

—Israeli Air Force Col. Ilan Ramon, 29 January 2003

5.12.2018

and now for something completely different

Reposting this for some of my friends who we hung out with last night. Cheers to Steven Wright.

In the effort to keep things just a tad bit lighter, here are a few quotes from one of my favorite comedians, Steven Wright:

I'd kill for a Nobel Peace Prize.

Half the people you know are below average.

82.7% of all statistics are made up on the spot.

A conscience is what hurts when all your other parts feel so good.

A clear conscience is usually the sign of a bad memory.

All those who believe in psycho kinesis, raise my hand.

If everything seems to be going well, you have obviously overlooked something.

When everything is coming your way, you're in the wrong lane.

I intend to live forever ... So far, so good.

What happens if you get scared half to death twice?

My mechanic told me, "I couldn't repair your brakes, so I made your horn louder."

If at first you don't succeed, destroy all evidence that you tried.

Experience is something you don't get until just after you need it.

If at first you don't succeed, skydiving is not for you.

Steven Wright

5.10.2018

vistas

a hummingbird pokes its nose into the throat of a purple rhododendron. spring has sprung. calvin has a may cold. he seized this morning in my arms. screamed. stiffened. convulsed. i slathered lavender oil on his toes and souls. squirted cannabis oil in his mouth when it was over.

skies are white. pine fronds roll in the wind. it looks cold outside. my back is slightly better today, having recently done a number on it transplanting a large shrub that is really a tree. things are finally getting green.

college students amble by at ungodly hours. drunken, some of them. they are through with their classes. my son will never be one of them. he can't even push a doorbell on his own. at night he bangs his head so hard on the padded side of his bed i wonder if he could give himself a concussion. wonder if his brain could be any worse than it already is. he's my sweet, drooly boy. my insufferable son. my enigmatic child.

there's that back twinge again. i hope it doesn't seize up on me.

from the base of a spruce a gray squirrel ogles me through a warped window. an animal more capable than my son. until it gets run over by a truck.

dirty water shimmers in a sunflower-shaped birdbath. so much to be grateful for. so much to lament. going nowhere fast. somewhere, light bends through a half-full vase. the world looks different through discrete lenses. we ought to constantly seek other vistas.

the artist, song, his moves and frames replay in my head. genius. yes. for some, this is america. will misguided whites ever wake up? attempt understanding? make reparations? change? what is with people? still. these days. so lacking in humanity. such ample conceit, contempt, fear, denial, deceit, greed.

perspective. sitting here inside on a now-beautiful day. san francisco both a distant memory and a dream to one day behold again. i'll be back for you. your endless friendly faces, spectacular parks, beaches, vistas, cozy alcoves.

here now. wind still blowing. bees buzzing. child stomping. song repeating. back breaking. heart aching. is there a difference? limited existence simultaneously rich. looking through different lenses. seeking unfamiliar vistas and faces.

Photo by Michael Kolster

5.06.2018

how it goes

At two o'clock this morning I woke to my restless son needing to be laid back down and covered up because he can't manage to do so by himself. Just before falling back to sleep, I had to get up again half an hour later, then at three and three-thirty. Calvin's diaper was wet, so we changed it thinking it was the source of his restlessness. But with a dry diaper on, he remained antsy, so I crawled in next to him and put him in a "mama lock" (my leg over his legs, my arm over his arms with his head resting on the soft spot between my chest and shoulder) hoping this kind of body swaddle might ease his agitation. It didn't, and neither of us fell back to sleep until Michael rescued me at five-thirty when I managed to get a bit more shut-eye.

I wish I could say this was an unusual night, but I'd be lying. In fact, the lion's share of my nights are similar, at least when it comes to waking often to reposition him, which is why I am chronically sleep deprived. It's just how it goes.

While lying awake next to Calvin, I pondered the various remedies we've attempted to thwart his seizures and reduce his restlessness, plus some remedies we haven't yet tried. It occurred to me that I ought to look into making a second THCA cannabis oil by using an indica strain rather than a hybrid, for giving to Calvin at bedtime, since indicas are relaxing while sativas and hybrids are thought to be somewhat stimulating. Nearly five years ago I had chosen a hybrid cannabis strain called Chemdog because I wanted to avoid sedating Calvin during the day, and it has helped to quell virtually all of his daytime grand mal seizures. Now, however, I am wondering if the Chemdog, in the absence of the CBD (which we eliminated some weeks ago because it appeared to be triggering some of Calvin's complex partial seizures), might be causing some of his insomnia and restlessness. Up until now I was wholly convinced his restlessness and insomnia were the product of benzodiazepine withdrawal (I've read about this sort of thing happening) and while benzo-as-culprit still makes the most sense to me, perhaps I should be open to the fact that it could be something else all together, or a combination of factors.

So tomorrow I'll call Remedy dispensary and see what they might have in terms of a high THCA indica strain. Little doubt they'll be able to help me out, and if so, I'll make the oil, give it to Calvin at bedtime for awhile and see if his sleep and/or seizures improve. If not, my next strategy is to introduce a CBDA oil that I've enlisted someone to make for him.

As always, I'll let you know how it goes.

Making my THCA cannabis oil