3.28.2015

givin' and gettin' some sugar

Tonight's the night for givin' and gettin' some sugar.

Michael and I are hosting our seventh annual and final CURE epilepsy benefit. In seven years we've raised over $100,000 for epilepsy research, and we couldn't have done it without the love, support and funding from friends and family—some who live close to home and others far away—including some compassionate people whom we've never even met.

This year we're expecting over one-hundred guests, at least that is how many have responded. I hope we don't run out of booze ... or maybe I do!

I want to take this chance to thank everyone who has contributed their time and energy, their money and their love. I want to thank all of the wonderful people in our community—you know who you are. You make me blush with gratitude. I want to thank the twenty-two local establishments who have contributed amazing appetizers, desserts and gift certificates galore, and to sell me the wine and beer at cost. I want to thank the men of String Tide who've sung and played their fiddles, piano and guitars for the past five years. I want to thank my friends who pickup food, set up the space, manage the buffets, greet the guests, tend the bar, collect donations and help clean up the mess and to Calvin's nurse, Beth, who stays up late watching over our son.

And thanks to all of you who have donated in honor of Calvin, to all of you who have given whether you attend the benefit or not. So far this year we've raised over $16,000. I hope to get past $25K. It's not too late to join us if you can! Visit the invite here.

So, one last time, in the spirit of giving some sugar, please donate what you can if you can to CURE epilepsy at: http://www.calvinscure.com

Getting some sugar from Lauren at last year's benefit

3.26.2015

day fourteen

At four o'clock I heard him gasp.

"Here it is!" I called to Michael, whipping off the covers to get to my boy.

I grabbed the syringe of concentrated THC cannabis oil that I'd brought upstairs the night before, in expectation of this nighttime seizure, then I squeezed the oil under his bottom lip and rubbed it into his gums. Michael said within ten seconds the spasms stopped.

After a few minutes Calvin was asleep, his tummy grumbling and his body shivering in the wake of the fit. But by four-thirty his body had calmed and he was breathing deep and slow, my arm resting on his hip.

A year ago Calvin had a seizure as we were leaving to set up for our annual CURE benefit, which we are hosting this coming Saturday. For years he had them exclusively between five o’clock and six-thirty in the evening, hardly ever in his sleep. Since starting Calvin on a homemade THCA cannabis oil a little over a year ago, Calvin has not had a daytime tonic-clonic (grand mal) seizure for almost seven months even though we’ve reduced his benzodiazepine by seventy percent.

Maine Health and Human Services once tried to characterize Calvin’s condition as stable. We went to a hearing hoping to educate them, telling them that there is nothing stable about epilepsy and that, even though Calvin hadn’t been to the emergency room in a long time, there was no telling when he might.

Just last month we spent twelve hours in the emergency room watching Calvin seize and be pumped with four powerful sedative medications meant to make them stop. If they hadn’t stopped when they did, we would have been transported to the Maine Medical Center where they’d have given him an IV of Depakote, a drug that when he was two began wreaking havoc with his liver, and if that didn’t work he’d likely have been put into a medically induced coma, from which some kids never return.

Today is Epilepsy Awareness Day. You should know that epilepsy is prevalent: one in twenty-six of us will be diagnosed with epilepsy at some point in our lives. You should know that epilepsy can be lethal: it is estimated that fifty-thousand Americans with epilepsy will die this year from seizures or related causes such as drowning. You should know that epilepsy can be elusive: over thirty-percent of people with epilepsy continue to have seizures despite the medicines they take. You should know that epilepsy is stigmatized: nearly one in one-hundred people have epilepsy, though many still choose to hide it for fear of being ridiculed or victimized. You should know that epilepsy is chronic: there is no cure, so its sufferers must live their lives taking powerful medications that can cause horrible side effects, some of which can be lethal. You should know that epilepsy can harm development: repeated seizures and drug side effects can impede development and cause irreversible cognitive delay. You should know that epilepsy can be painful: seizures can result in serious head injuries, broken noses, lacerations, broken bones and burns. You should know that seizures can feel scary: seizures can cause dreadful hallucinations including the fear of dying.

Calvin bounced back okay from his seizure today, likely because of the cannabis oil. But there is no doubt in my mind he's in for more and, without a cure, my little boy may suffer them as long as he is alive.

Please give what you can, if you can, to CURE epilepsy at Calvin’s Cure.

The video below may be difficult to watch. If you cannot access it here, view it on You Tube here.


3.23.2015

all the little children

Though still icy and white outside, for some reason the world looked black to me this morning. Perhaps because it was so goddamn windy, the temperature still hovering around nine degrees. Or, perhaps because of Calvin, the reason I can never sleep in past five o'clock these days. Maybe it was because I hadn't had my caffeine or that I’m weary walking circles with my disabled boy, of spooning in his seizure medicines and of wiping away his drool.

When I finally sat down and read the news about seven siblings who perished in a Brooklyn blaze early Saturday morning, it made me think of what Michael had said earlier, hoping to ease my way: things could be a whole lot worse.

After Calvin left for school, I downed my coffee, had a bite to eat, then bundled up to take Nellie for a walk. I strolled slowly, studying the pitted frozen pools at my feet. I kept imagining all the little children, ages five to sixteen, and wondered how their parents and their sister are going to cope.

As I walked, I held a kind of silent vigil for them and for all the lost children whose parents I’ve known. I first thought of Kari, a bright, most beautiful girl whom Leukemia claimed when we were both teens. I thought of Jennifer, who at seven lost her battle to cancer, too. And of Rainier, who, in the wee hours after entering the world early, couldn’t hold on. I recalled Lily and Rose, flowers of girls who never breathed their first breath, and of little Katie, too. And of sweet Kelli who epilepsy took when she was just fourteen. At twenty-three my friend Martin went down in a plane along with his dad, and the maid of honor at a wedding I was in lost her nine-year-old girl to a bullet at Gabriel Gifford’s ordeal. Childhood friends lost their young son to kidney failure, others lost their children to drug overdoses while still others took their own lives.

When I got back from my walk I remembered last night on the futon when a smiling Calvin was smothering us both with hugs, Nellie by our sides. I had said to Michael that we have a nice family. As I cleaned up this morning’s dishes and hung sopping bibs to dry, I considered my boy Calvin, who, though he will likely never utter a word, is here now, and is as pure as the rain which I hope will soon be melting away this icy cold.


3.20.2015

the promise of spring

If it weren't five degrees outside this morning with a couple of feet of crusty snow still on the ground I might begin to think it's spring. Alas, with daytime highs expected in the twenties and thirties for the next several days, the glaciers that surround our house are not about to recede any time soon.

And yet, as I keep reminding myself and the friends I meet on treacherous frozen paths, we are heading in the right direction; inch by inch, degree by degree, we are leaving winter behind.

The promise of spring, for me, is simple. It means being able to take Calvin outside in the backyard or down the sidewalk and to the fields. It means working the earth and seeing green. It means catching the first glimpses of flowers from bulbs I planted last autumn: tulips, crocuses, narcissus. It means longer days and warmer nights and barbecues, shumai burgers and bare feet. It also means giving Calvin less and less of his wicked benzodiazepine and seeing gradual improvements in how he walks, stands, behaves and sleeps. And it means he'll be getting sick less and, with luck, seizing less often, too.

Spring is a new beginning—a time to realize dormant dreams and, after such a long, hard winter spent mostly indoors, it feels as though I've done my time. So, I'm sitting here, most impatiently, aching to be set free.

3.19.2015

dear friends: this is your chance

This is a special shout out to my childhood friends, high school classmates and college buddies, but also to all of the remarkable people I've had the privilege of knowing and loving and partying with: If you've donated before, please give again if you can. If you've never donated, this is your chance! Join us in spirit (I know you can't join us in person) by giving what you can when you can if you can.  CURE epilepsy at: www.calvinscure.com

3.16.2015

crossroads

I can barely talk with her anymore. It's clear, on most days, that once she figures out how to use the phone she usually doesn't know who is on the other end. She's distracted, can't answer most questions and sometimes she simply disappears. It's what's happening to her. She's disappearing, dissolving really.

I'm struck by the fact that my son and my mom, who are seventy-four years apart, are meeting at a crossroads. While Mom is losing her ability to communicate, Calvin seems more and more present and responsive, though I doubt he'll ever talk, his brain's open window to speech likely having closed soon after he began having seizures and having to take so many drugs. While Mom is gradually losing her ability to walk, at this point shuffling and taking baby steps, Calvin is walking more steadily and with less assistance. More and more my mother is being spoon fed, while Calvin's body, as we reduce some of his medicines and increase his cannabis oils, is calming down enough, perhaps, to some day use a spoon again. Both of them require a spotter standing behind them on the stairs, my mother becoming more feeble, Calvin gaining strength.

Mom and Calvin are like two ships passing. They met briefly, but have continued on their paths, each trajectory opposite of the other, while I stand in the middle watching, vastly unable to affect either course except to embrace it, and hope for them a soft landing.