the good the bad and the ugly

the good is all in my boy. his flawless soul, fair skin, oceans for eyes, hair the tone of autumn leaves. his toothy smile. his hearty giggle. he’s pure to the bone, not a malicious one in his body. he’s dutiful even in the face of bitter pills morning, noon and night. he knows no want beyond hugging, eating, sleeping, venturing outside—weather permitting—then going back home and taking a bath. he is not greedy or mean or power-hungry or spiteful or racist or bigoted or hateful. his world is, at once, small and boundless. he is only good. good. good.

the bad is just that. a nightmare. the seizures. the years that pass as if decades. the fatigue, the sleep deprivation, the worry, the drugs, drugs, drugs, drugs, drugs. the side effects. the irritability. the relentlessness. the tension. the lack of resolve. everywhere i look there is a problem without an answer like a month without sun, a thirst without water.

the ugly i feel is inside me. it spews out in red and white-hot flashes, stitches my brow such that its creases and folds feel coarse and immalleable like scars. my shoulders draw into my neck like they do in the cold of winter. this ten-year winter is forever and i’m brittle and hardened. its ugliness my pathetic impatience, my harsh language, my unforgiving white-knuckle grasp.

things like these

It's things like these—one of which happened around 6:30 last night—that send me into spirals of despair. 

He's having seizures more often lately—the still, silent ones likely steeling him away in the dead of night as I sleep nearby unaware of their presence. I'm racked with angst over them, and the dread I feel compounds my worry about his extreme pigeon-toeing, his incessant eye-poking that, defying a previous surgery, has turned his right eye inward again, his loose joints, his fractured teeth, his persistent chin rash from fountains of drool caused by the clobazam, his chronic constipation, his anal fissures, his painful gas, his poor balance, his interrupted sleep, his lack of focus and increasing agitation which no doubt have to do with the high doses of antiepileptic drugs he has to take that still don't stop his seizures.

The medical marijuana dispensary I've been consulting with has encouraged me to make the THCa cannabis tinctures myself. They say it might be my best option if I want it immediately, made to my specifications, and for the lowest price. But it's not the best option considering I've got none of the equipment and little spare time what with my writing, holding down the fort and taking care of a kid who can't walk by himself, is still in diapers, won't play with toys for longer than a few seconds or minutes, can't feed himself, and whom I can never take my hands off of except to confine him to a johnny-jump-up (in which he pokes his eye) or in his safety bed (in which he sits on his shins exacerbating his toeing-in problem.)

So the decision is not an easy one. I feel the need to do less, not more, of taking care of Calvin business. But my desire to start him on the medical marijuana is intense. I can't go on living this way and, though Michael reminds me that this tincture will be no silver bullet, we've got to find a way out of this insane cycle of things like these I've mentioned that are slowly but surely driving me insane.

The video below may be difficult for some to watch. If you cannot view it, click here.

warming trend

Saturday evening we enjoyed a bit of a warming trend: thirty-seven blessed degrees just before the snow began to fall. Michael hauled out the barbecue that had rusted a bit having not been used for months. He brushed the hot grill then slapped some thick shumai burgers on it, searing the shrimp-sausage-cilantro-ginger-scallion-habanero slabs on both sides. Luke and Sarah brought homemade steak fries tossed in olive oil and herbs which we baked to a golden crisp. For one night we managed to quench our seasonal affective disorders, slathering our burgers in garlic guacamole and mustard like we do in summer, slurping beers and bourbon on ice and, for a time, mostly forgetting about our disabled sons.

The week before I’d been shocked back into winter having spent several days out west in seventy and eighty degree weather. The relative calm I’d experienced sleeping in, seeing girlfriends, spending time with my mom and siblings—child free—was, once home, yanked out from under me by my whiny, hyper, stumbling kid. The one thing that kept me from losing it completely was the thought—the hope—that a tincture of medical marijuana was just days away from melting into my son’s mouth and dissolving away his seizures and his irritability and, thus, my angst.

But, like a carrot dangling in front of my nose, this medical marijuana thing has become frustratingly elusive, this spiraling forward motion that I sense is mere illusion, one that appears to be moving in a direction but in reality is static. It’s vexing, because day by day Calvin grows, and as he grows he outgrows the doses of his two pharmaceutical seizure medicines. I don’t want to increase them because the hope is to eventually decrease them if the medical marijuana tinctures work.

A few days ago I visited Michael in his photo studio. He showed me the huge prints he’d made for a friend and client. They laid on top of a large worktable, their silver tones shifting and swirling in the flat white sky and silken water of a reservoir and its dam, the chemicals used to make the photograph eerily alike the toxic blend that once was the polluted river itself. As we were leaving I noticed a large cardboard box on the floor. It was overflowing with amber bottles and plastic bags, urine test strips and foil blister packs, remnants of some of the drugs Calvin has ingested during the eight years since his epilepsy diagnosis. Michael means to continue photographing the junk, the awful paraphernalia strewn like pollution in the wake of repeated seizures and vicious side effects, of EEGs and blood draws, ambulance rides and emergency room visits, IVs and intubations.

And then I think about the plant—cannabis—growing in some warehouse all tall and beautiful, lush and green, drinking in all of our carbon dioxide and breathing out life-sustaining oxygen. This plant is there for the taking—for the tincturing—but certain folks ignorant of its uses and benefits are attempting to make it more difficult, perhaps even impossible, for children like Calvin to access in Maine. And, so, I’m frozen in this static winter of ice, paralyzed and fearful of giving Calvin a treatment that might be whisked away at any moment, rendering him with little to no chance of thriving from its benefit. Then I remember what I recently told another mother in a similar situation: that there is nothing to fear but fear itself. So I’ll move forward, pull on my ass-kickin' boots. Gonna go out and kick some major butt. There's a warming trend coming and I'm going to melt the frigid grip of ignorance, testify against the bill prohibiting kief, because without it there will likely be no medicine for my son. Anyone wish to join me?

photo from web

save the date

This year's annual CURE epilepsy benefit will not be held in February, as in past years. Super storm Nemo put a pretty big dent in the number of guests who were able to dig out of the snow to attend last year's event, though we still managed to raise over $22,000 for epilepsy research. So, this year we are going to have a go at it in April instead, while still keeping in mind the original intent of honoring Calvin's birthday, this year being his tenth spin around the sun.

So save the date, Saturday, April 12th, to dress up, dance, dig deep and donate to epilepsy research. There will be delicious food and drink, enough to help you get down with your bad selves on the dance floor. And for those of you who can't make it, please simply join us virtually by donating online at http://www.calvinscure.com and help us surpass this year's goal of raising $30,000 to find a cure for epilepsy.

It's still a long way off, but I am already looking forward to it! Hope to see you there.

rally cry

It continues to be a huge undertaking, this pioneering of the right type of medical marijuana for Calvin and for kids like him who suffer from intractable epilepsy and live in Maine.

Nine months ago I knew little to nothing about this topic. Now I understand that we must procure and grow the right strains of cannabis high in cannabidiol (CBD) and low in tetrahydrocannabinol (THC) so as to avoid the psychoactive qualities in resulting tinctures. I've discovered that high CBD strains are not the only strains that have proven effective for treating medically refractory epilepsy, but that a tincture of THCa, in its acidic, non-psychoactive form, can also help. I have learned things about pest control and soils and fertilizers and growing conditions and clones and decarboxylation and liquid chromatography and tincturing. I've come to understand that it is illegal to transport plants, seeds, clones or tinctures across state lines. I've grieved the death of a handful of children with Dravet syndrome who died from prolonged seizures before they had a chance to get medical marijuana. I've heard that over 100 families have uprooted themselves and moved to Colorado to obtain the kind of medicinal cannabis, yet unavailable in Maine, that will likely lessen or stop their children's seizures, improve their overall well-being, even save their lives. I've read about the corrupt history of marijuana prohibition and have witnessed, first hand, the ignorance of some who would blindly prevent our children from obtaining what might be the only kind of medicine that can help them thrive.

We are so close to getting medical marijuana for Calvin that I can practically taste it. I have been given the recipes, our chosen dispensary has the appropriate strains growing, I'm holding my medical marijuana caregiver card and Calvin has his patient card. I am reading and writing and raring to go.

But just yesterday, I learned of a bill recently introduced to the Maine legislature that will prohibit the sale, use and possession of kief, the resinous substance extracted from the cannabis flower which is used to create various highly therapeutic tinctures that can be precisely measured, titrated and administered to our children without psychoactive side effects.

Calvin, who is now suffering weekly seizures and who has pretty much hit the ceiling with regard to the doses and side effects of his two antiepileptic pharmaceutical drugs, will likely benefit in myriad ways from tinctures of medicinal cannabis, medical marijuana. Calvin cannot smoke marijuana, nor would I want him to. Besides, heating the bud by smoking or cooking it is what renders it psychoactive, in effect turning non-psychoactive THCa into psychoactive THC. Ingesting it in its raw form would not allow for the consistency and minute titration that epilepsy patients require. The only option for Calvin, and for kids like him, is to put it into a tincture that is made with kief.

So, my new battle is to ensure that this bill does not pass, or if it does, the language concerning the banning of kief gets eliminated. I'm contacting our state representatives (you can too) and the folks at our Department of Health and Human Services, who are likely ignorant about the bill's restrictive and harmful impact on our sick children. I'll also be meeting with Senator Angus King (Independent, ME) on January 31st to see if we can rally his support on important federal legislation regarding medical marijuana.

Readers, this is a rally cry. What can you do?

http://www.mainelegislature.org/legis/bills/bills_126th/billtexts/HP124501.asp

synthesis, beauty and light

Jasmine fills my nostrils each time I enter the room, which is painted mustard and is mine for three days. My sister-in-law has left a pile of tiny laminated cards resting in a porcelain bowl at my bedside. The first one I choose says, Power, the second, Truth and the last has the word Patience.

I wake to the sound of a foghorn skipping across the San Diego harbor. During past visits barking seals have broken my sleep and in my brain’s morning fog I’ve mistaken them for the sound of Calvin seizing. When I open my eyes I see a string of Tibetan prayer flags hanging across heavy white linen swags. Sitting up, I can see out the sliding glass doors to the boats in the marina which are floating in glass. The city beyond, though laced in fog, stands sharply against a body of blue mountains, Mexico in the distance.

Tonight I leave all this behind, leave the lusciously warm weather, the rumble of airplanes, the caw of green parrots and the chirp of songbirds, the lush foliage, the restful sight of a big western sky, of dolphins and pelicans, of city lights and the feel of Mom’s silver head, soft hands and loving smile—and family.

Back at home it’s been snowing again and will dip down below zero tonight. My boys are likely cooped up inside. I can imagine Rudy traipsing around behind them all day dragging his claws across the hardwood floors. As I write this I realize I’ve been having bad dreams about them, and the ache to get home deepens. I wish I could bring them here or simply lasso the West, with its sun and calm and expanse and repose, and drag it out there to Maine to melt off all of that cold and ice which makes me draw my shoulders tightly into my neck.

But, I still have today to soak my body in the sun and sop up as much of my aging mother as I can. Whenever I leave this place I never know whether I’ll be seeing her again. Bit by bit the Alzheimer's is melting her into this California scene, dissolving her into its purple and gold wallpaper days. I turn three more cards over—for my mother—and the words that appear are Synthesis, Beauty and Light.

simply mom

She gets littler and littler each time I see her. In so much as it’s her frame shrinking over time, it is also her being, her mind.

Scott and I approach Mom on the grass and swoop in for a group hug. Her downy, white head buries into my chest, her longish arms wrapping around our waists. Though she might not remember our names she seems to know she’s being cradled by her adult children and I’m sure she’d embrace us forever if she could.

We take Mom to the San Diego YMCA to watch Scott swim. In the shade I feed mom pieces of a Subway sandwich and some blueberries, dolling them out one by one so she doesn’t eat too fast and upset her digestion. Just like Calvin, I think. The skin around her watery eyes is red and irritated from rubbing or allergies or both. After lunch I set her down on a lounge chair, thinking the slap-slapping of swimmers arms will help her to rest. I offer her a stick of gum that she attempts to put in her mouth, paper and all.

For a good part of an hour we sit there on the deck. I’m taken back to my days as a child when I spent nearly every day at the pool. Some things don’t change. There’s the lifeguard wearing red and white sweats sitting behind sunglasses, under a visor and atop a tall sturdy white wooden chair. A man on the deck teaches swimming lessons to a couple of grade school kids. One of them, the boy, swims like a spider the way so many of my swimmers did when I was a coach. He’s telling the boy, who is about Calvin’s size, though younger, to reach with his arms and I find myself smiling. Then I find myself crying. I want to be transported to a place and time where I’m teaching my kid how to swim, telling him to keep his chin down, kick his feet and keep his elbows up. I long to see his little scrawny body move down the lane inch by inch until he reaches the deep end where I shower him with praise.

I see Scott in the next lane over, his own long arms tanned and toned from hours spent in the pool every week. He moves through the water like a serpent and I wonder if my stroke looks at all like his, and I am aware that my own boy will never grow into the same kind of man that my brother is, that his father is.

After the swim, at my sister’s condo, we lay Mom down for a nap. She falls asleep hard, then jitters and shakes and I wonder what is going on in her brain. Thirty minutes later she wakes to go to the bathroom. I take her in to help her and as she’s washing her hands we look into the mirror at each other. With my arm around her I tell her that I love her. Looking into the reflection of my eyes and smiling, she replies, “I love you. Really. No kidding.”

photo by Scott Shake