lithe and long, crooked and clawed

Cool air flows inside my denim trucker and through my gauzy shirt as I step into the North Yarmouth Academy ice arena. The ice is gone, revealing a polished cement floor perfect for trikes and go carts, which children are piloting like bumper cars at a carnival. One of them is my ten-year-old son Calvin, who I am surprised to see wheeling his way around the vast arena on a durable, red, chopper-style tricycle. The speed and finesse he exhibits astonishes me, though not as much as his apparent ability to steer the thing (for the most part.) It’s not an adaptive trike, but his physical therapist has outfitted it with Velcro foot straps and a safety belt so he can cruise with little risk of injury. I approach Calvin, who is with his one-on-one Mary. I call his name in a way he'll recognize, and by the time I swoop in for a hug and kiss he’s sporting a big, toothy smile. It has only been in the last year or two—perhaps three—that I’ve felt confident that Calvin knows who I am, and even then I’m sure he recognizes me by my voice more so than by my form or face.

Today, a community of disabled children and young adults have gathered for part two of the Special Olympics, this one an indoor version with various stations for the participants to enjoy. There’s a basketball hoop short enough for someone seated in a wheelchair to make a dunk, a bowling station complete with dense Nerf balls and pins, and a sensory table equipped with cause and effect toys that light up, vibrate, buzz and bark when the user touches them in a particular way.

A few minutes after my arrival, a flood of neatly dressed children stream through the door and into the arena. As far as I can tell they look to be in their early teens. Handsome boys wear shirts with ties and slacks. Some are wearing sweaters. Long-haired girls are dressed in skirts and leggings, skinny pants and boots, blouses and cardigans. All are quiet, serious and watchful.

The Academy students, of which there seem to be between fifty to a hundred, are here as volunteers to assist in the Special Olympic activities. They first form a large ring facing outward, around which the disabled youths parade alongside their teachers, aides and therapists. The prep-schoolers applaud my son and his classmates as they pass by, the din of clapping and cheers ricocheting off of the hard angles of the space and the wheelchairs, trikes and braces. I watch all of the children and marvel at the contrast between smiles and grimaces, between lithe and long arms versus crooked or clawed, between calm, thoughtful, intelligent minds versus seizure-racked and broken brains. I wonder what these "typical" kids make of my son and his classmates, of the contorted bodies and faces of the young adults being wheeled by, of the disabled flock that they have come to honor at this event.

From the opposite side of the glass I see a man, perhaps my age, weaving his way through the crowd of kids. He's tall and slender, dressed in a dark suit and I imagine him to be one of the teachers, perhaps the principle. He has a kind face and demeanor and when he glances my way we both smile. I want to thank him and his students for their time and concern, but when I head out onto the cement rink to find him, he is gone.

Off to the side I see Calvin having a try at bowling. With help, he pushes the Nerf ball down a sloped track and knocks down all but one pin. He tries again and knocks down all but two. A third attempt spares but one, and when the surrounding group cheers he doesn't smile, which makes me worry. The pins make me think of his seizures, how no matter what we hurl at them, a few remain steadfast.

I gather Calvin into my arms and kiss him all over, making him smile, which relieves me some. I can feel the Academy students watch us—perhaps as a spectacle, though hopefully with plain curiosity for their expanding universe. I wonder what they think about this mother's show of deep affection for her awkward, legally blind, wordless, drugged-up, messed-up kid. I wonder if they think of themselves, wonder if they think of their own mothers, wonder which ones will take this experience and run with it, and which ones will simply run away.

Calvin on his trike at last year's Special Olympics at the North Yarmouth Academy Arena

mother's day blues

Like any other, the day started painfully early, but the weather, grey though sixty, offered me a little hope. After breakfast, the three of us took a drive out to the beach. It had been months since we'd been there as a couple, who knows how long since we'd brought Calvin along. Waves lapped the sloping narrow beach, and as we walked hand in hand with Calvin under an emerging sun he stared at the burning orb, twisted and whined, cackled and dropped to his knees simply refusing to walk.

A few yards down shore we stopped to rest on a sun-blanched driftwood trunk. Michael took our impossible kid into his lap while I sat on the far end weeping tears of despair and frustration. We didn’t linger, and on our way back to the car Calvin kept up his maddening antics until Michael picked him up. I watched them pass a mother carrying her infant in the exact way Michael carried Calvin, who appeared as a giant compared with the tiny baby. With furrowed brow, I spit obscenities at my kid. I cursed the world and its ruinous start to Mother's day.

Back at home we tried taking naps, but just as I was drifting off I heard Calvin begin to whine then cry. I dragged my weary body into his room only to find him strangled in the netted canopy of his bed. He’d poked his head through a small gap at the end, its cords wrapped around his gills like a fish. Tears streamed from his eyes and, untethering him, I noticed ropey, red welts at the back of his neck. I held him close and wept again.

Finally Calvin napped, as did I. The much-needed sleep brought its healing properties to my psyche, enough so to put Calvin in the stroller in search of sweets at the little red ice cream shack across campus. Once there, a ridiculously long line of students convinced us to abandon our quest, so we made our way back home, coaxing Calvin to walk on his own. Just as he had at the beach, though, he balked, contorted and fussed. At the edge of the campus quad I took Calvin from Michael, encouraging him every few steps. Once we arrived at the dorms, which Calvin seemed to recognize, he was much more compliant, so I praised him for his efforts and told him we were almost home. In the end he made it a great distance, perhaps as far as ever, albeit stubborn and pigeon-toed most of the way.

Shortly after our return, thirsty in the late afternoon heat, we broke into the absurdly large bottle of Maker's Mark that Michael had given me. The Hallmark holiday was beginning to look up. I spoke with my mother-in-law on the phone, who at times lovingly calls me Sweet Pea. My sister called and I talked with her and my mom a bit, and though it’s getting harder and harder to have a conversation with Mom, I was still glad to hear her voice and to wish her a happy Mother's Day.

Michael and I ended the day toasting twenty-four days since Calvin’s last evening seizure, more convinced now that the THCa cannabis oil might be helping, though suspicious that it is driving his seizures into the morning hours; we gave Calvin a few extra drops before his bedtime.

Having been the first warm evening of the spring—one without bugs—we pulled the coffee table outside to eat Michael's herb-encrusted barbecued rack of lamb with wild rice and salad. As dusk settled in, we reclined in cedar chairs sipping red wine and watching a few bats silently circle above our heads, an indigo sky their backdrop. At times I thought I'd caught the scent of the white magnolia blooming in the garden.

Before bed, I checked my email and found a Mother's Day message from my friend Jessica:

There are so many different versions of having a mother and being a mother. On this day of thinking about such things I am thinking for the moment of you and of how your version is really something quite special. Thanks for posting those beautiful photos from the Special Olympics—love those smiles. I'm quite sure if there were a Mom Olympics you would be gathering all sorts of gold.

The day that had started out so poorly had made a 180 degree turn. With a little nap, the help of Michael, of family and of friends, and with the unconditional love of a goofy little kid, I went to bed happy and more certain than usual that anything might be possible.

blue ribbon boy

My core competitive nature makes me very proud of Calvin for winning a first place ribbon (for the second year in a row, mind you) in the assisted-walk event at our regional Special Olympics. By the looks on their faces—watch lane 5—I think he and Mary had fun.

double whammy

I don’t even know how to start or what to say except that I am weary of writing about seizures and it would appear that I’ll likely forgo writing about them long before they stop.

Calvin was hit with a double whammy early Monday morning. I heard the first one at 3:30 a.m., heard that unmistakable gasp when the seizure releases its grip on his lungs. At his bedside I watched his wide-open eyes search for nothing. I considered giving him an extra dose of cannabis oil even though the seizure was over, thinking he might have another, but I regrettably ignored the niggling voice telling me that I should. Never ignore the niggling voice.

After two hours of fitful, post-ictal sleep, as I feared, he woke to another. This time, I ran downstairs, got the vial from the refrigerator, went back up, dropped five beads of cannabis oil under his bottom lip and rubbed it into his gums. Almost immediately he gasped for air, the seizure seeming to come to its end earlier than usual, and before his hands turned blue. He slept soundly for another couple of hours, waking only for his other morning meds.

Michael and I decided to continue increasing his cannabis oil dose, which had been about 0.5 mg per pound of his body weight. We think we could go as high as 2 mg per pound, though just like pharmaceuticals, it will depend upon emerging side effects—if any—and efficacy. If, on a higher dose of my homemade THCa cannabis oil, Calvin’s seizures don’t seem to be diminishing, then I plan to start him on a high CBD cannabis oil, the kind that many children in Colorado seem to be benefiting from. There are enough high CBD strains available in Maine now that, if I wanted to, I could grow my own and/or make my own oil again. But I’ve found a source for growing, extracting and tincturing who is ready to jump when I say the word, which, to say the least, eases my worry some. I just hope that, when the time comes, he can jump high.

My worry is that Calvin is simply one of those people—thirty percent or more of those with epilepsy—whose seizures will quit for nothing. But maybe, just maybe, a little double whammy of THCa and CBD will kick the shit out of his epilepsy once and for all.

inhumane

I know what it’s like to feel a being die in my arms, to assist in the taking of a life, the life of a thirteen and a half year old, arthritic, lame, nearly deaf, visually impaired, incontinent, well-loved companion: our dog Rudy. I know what it's like to see the pink poison bleed from the syringe into his vein, to hold his happy head in my lap until it is lax, to sense his breathlessness and to be told that he is gone. It’s miserably sad, leaves a hole in my heart and a sour pit in my stomach. I miss him. Yet, it was the humane thing to do for an old dog who spent his final days in much pain. Still, I hesitated, it was not an easy thing to do, and my melancholy lingers like smoke from dying embers.

When I read the news of last week's botched execution of Clayton Lockett in Oklahoma, I literally felt sick to my stomach, my mouth watering as bile rose in my esophagus. Though his crime was indeed heinous, I was reminded of how loathsome it feels to live in a country where capital punishment is still legal, while the rest of the civilized world has banned its inhumane use, and in the face of overwhelming evidence that the barbaric practice is no deterrent to crime, of mounting proof of its innocent casualties, of the tremendous monetary cost to society as compared to issuing life sentences without parole.

“We live in a vindictive society,” Michael says to me, and I ponder the hypocrisies of some—not all—who claim to be pro-life but might gladly strap a fellow human being to a gurney and shoot him full of lethal drugs, or lash him to an electric chair or stand him before a firing squad or hang him at the end of a noose or lock him in a gas chamber; all methods still used in this country. And though I’m not a Christian, I find myself wondering about the fate of the accused in a majority Christian nation, and I think I know the answer when I ask myself, what would Jesus do?

I can’t say how I’d feel if I were the mother or the sister or the daughter of a murder victim, but I hope I wouldn’t elect to snuff out the life of another as a way to teach society that murder is immoral, as a way to right a wrong, as a way to get even. What message does that send to our children? There is no justice in that, particularly when studies are beginning to reveal the significant number of death row inmates who are innocent of their crimes, a disproportionate number likely being black.

When I looked at some statistics, I learned that men favor capital punishment over women, conservatives over liberals, the less educated over the well educated, the old over the young, the states of the South and Midwest over the East and West. Still, it's difficult for me to understand anyone advocating for the taking of another human being's life in an attempt to make things right. I wonder, too, how victim’s families feel when the accused are executed. Do they really feel better? Do they feel vindicated? Righteous? Do they sleep at night? Can they live with themselves? What are their fears? What makes some of us so vengeful, so eager to delight in others' suffering, so ready and willing and justified in taking another human life?

And then, as always, I think about Calvin and about people who'd consider themselves suitable to decide whether children born like Calvin should live or die. I've heard them talk on the radio, their voices always sounding the same—boorish, small-minded, big-mouthed and vile—and I hear them cast aspersions on the innocent, hear them damn select groups of society, hear their hateful vitriol, and I wonder if they ever had someone—anyone—die in their arms, how might they feel?

photo by John Thurston

looking back

In May of 1995 I was thirty-one and living on Ashbury Street in San Francisco, a block and a half up from Haight. I’d just dumped my compulsive liar boyfriend of five years and moved from a tiny downtown Murphy-bed studio into a gorgeous, empty 1400 square foot Victorian flat with my dear friend Seti. It was one of the best years of my life. I had black hair and clip-in extensions, wore a little lipstick, was in some of the best shape of my life living in a city meant for me.

I’d just taken a thrilling five-day paddle-boat expedition down the raging Colorado River in the Grand Canyon, had begun realizing a lifetime dream of designing clothes, was driving a 1967 Ford Mustang 289, living footloose and fancy free below a couple of goofy guys—artists both—whose apartment adjoined ours by way of a backyard garden staircase that lead up to a deck overlooking Golden Gate Park to the blinking red tip of the Golden Gate Bridge and out to the Pacific Ocean.

Yesterday, Seti’s former boyfriend, Tunç, sent me some old video he’d taken of her and I that May walking from our apartment down Ashbury Street toward a favorite Haight Street restaurant called Cha Cha Cha. Watching the video cracked me up, seeing the two of us ham it up for the camera, seeing the love I had for my friends, for the city, for life.

Weekday mornings, just like everyone else, I had to wake up, get dressed and go to work, after which I’d take an outdoor swim, come home and cook dinner, eat it, with or without Seti, but always with a glass or two of red wine facing a rolling bedroom fire on a fake Flokati rug. Then, I’d put on some jazz, sit down at my drafting table and sketch until at least midnight. I had no other responsibilities besides paying the bills. I could come and go as I pleased, travel when I wanted to, visit family on a whim, go off adventuring with newly befriended strangers, stay up all night if I wanted to. My weekends were free to dine out or stay in with friends, host parties, browse vintage stores and flea markets, nap in Golden Gate Park, hike Mt. Tamalpias, snake along the coast to Stinson Beach, dress up in a sleeveless, plaid polyester pantsuit to dance with a bunch of buff, shirtless men in the back of a flatbed truck during San Francisco’s Gay Pride Parade, ride out to Ocean Beach, sunbathe nude at Baker, drink wine and listen to live music at the Beach Chalet or Yoshi's or EOS or Firefly, eat Indian and Ethiopian and Italian and Thai and Dim Sum and Mexican and French and Cajun and Californian Infusion cuisine.

After watching Tunç's videos while icing a sore back, I took my tired self upstairs. I grieved the loss of my former life to Michael. “You’ve got a lot more to take care of now,” he said softly. I looked at my nude body in the mirror, which has thickened some since then. I asked myself, had I known then what I know now, would I have wanted to have children?

As I write this, having just spoken to Seti on the phone from Los Angeles, I realize I still have the important stuff of life, even if I don't have some of the luxuries. I have Seti, I have Michael, I have Calvin—the best person I know—I don't have my dad but I have my mom, at least the essence of her, I have my siblings and a new family, I have love and laughter and my health and a beautiful home, wonderful friends near and far, a great community, a gorgeous garden, a place to make art, to write.

Perhaps I'm just trying to make myself feel better, to justify away my sadness at the loss of such freedom, but maybe that freedom was somehow hollow, or contrived, or stuffed with things that didn't matter, like hair extensions, fast cars, tight bodies, fried calamari. (Okay, nix the fried calamari from that list.)

Looking back, maybe I've just traded what was a broad life for a deep one. And, hopefully, nineteen years later, I'm still mostly me.

hazards

I just got back from doing a few errands, thinking that my back, which I strained the other day planting some large arborvitae, was feeling a little better. My daily lifting of a nearly fifty-pound kid likely predisposes me to hazard, especially as he grows bigger and I grow older.

My first stop was a visit to Lucretia at her farm. She’d slept over one night in March when Michael was gone and Calvin was sick, and she’d left a library book on an upstairs chair. Finally returning it to her, I found her out in the fields planting seeds in rows of mounds on this brisk, sunless day. Cupping my hands, I called hello to Muriel, one of the farm's beloved interns, out tilling a far field. I looked out over the land and saw Lucretia's 800 pound pig rolling in the mud behind an electric fence, and some littler ones nearby. It's almost impossible for me to see electric wires without thinking about things like EEGs and seizures and vagus nerve stimulators and deep brain stimulation—an occupational hazard of moms with kids who have epilepsy, I'd guess. The sky darkened, I shoved my cold hands into my pockets as I bid farewell to the two farm girls gracefully carving the earth clad in canvas coveralls and boots. I wondered when it was going to start raining.

From there I drove with the heat on full to the Firehouse in the next town over to return an overflowing bag of unused, expired Diastat vials—rectal Valium. As I handed the fireman the awkward bag, several vials spilled onto the polished cement floor. Picking them up, I mentioned to the man how nice it was that my son Calvin hadn’t needed to use them. It occurred to me that Calvin has had to use Diastat as an emergency measure to stop a seizure only once in almost seven years, and even then he might not have needed it since these days his seizures, though long, stop on their own.

My back beginning to ache, I decided to head home to ice it before grocery shopping. Once home I checked my messages, and came across this comment from a blog reader:

I have been in the hospital with [my daughter] for 4 days now. She had 80 grand mals in 4 days and it got to where we could no longer home manage it ... there are no answers. I wept in front of the neuro team this morning, unable to comprehend their suggestion to put her back on topomax when at 250mg/full strength two years ago we had a hospital visit and a year ago on topomax at 150mg we were here as well. Now, when we've weaned her off, that seems to be [their] answer? I wish things were easier, too. Thank you for writing about your frustrations. It eases my mind, and validates my own feelings. Sending you strength today and hope you're getting rest. xo

Comments like these are not uncommon, often tearing me up, a risk of writing the blog that I'll gladly face as long as I can help others. After reading it I realized that Calvin has not had to go to the emergency room for almost seven years. I don’t take this for granted, because I remember and loathe the days of frequent hospital visits, and I know that epilepsy can perilously burn out of control at a moment’s notice. We’ve simply been lucky, which is a strange word to describe our situation with a ten-year-old kid in diapers who can’t talk, is too dizzy and unbalanced to walk without a spotter, is at times manic and restless because of high doses of medications that don’t work to stop his seizures but do a fine job of impeding any progress he might otherwise enjoy.

My friend Elizabeth called me yesterday. It was a treat to hear her soft southern drawl, which I think she forgets she still has. She urged me to get Calvin onto a high CBD cannabis oil ASAP; her daughter has had near miraculous results on a strain called Charlotte's Web. I told her I was working on it, indeed might be days or weeks away from starting him on it. I sat on the porch in the sun regarding the back yard which is finally greening up, and as we spoke of cannabis and clobazam, diastat and neurologists and seizures, I realized how much of my life—even doing simple errands—is consumed by this hazard called epilepsy.