arrived

Dear Readers,

Have arrived in San Diego safe and sound. No wifi in Philly today so could not post. My apologies.

xoxo,
Christy

totally spent

I’m spent—totally spent—exhausted, fatigued or whatever you want to call it when you have to take care of an obsessive-compulsive eight-year-old boy who—because of anticonvulsant drugs—drools waterfalls, flaps like a chicken with his head cut off, screams at the top of his lungs and one who must be watched like a hawk for any sign of a seizure. At times Calvin seems to have the strength of a giant and at others he wobbles around the house pigeon-toed and bauble-headed as if his shoes were tied together and his spine were rubber. I get sooooooo tired of having to put at least one hand on him or his harness, practically at all times, to prevent a bad fall. He's like Raggedy Andy or Pinocchio and about as cute, though at times, when I'm taxed and overtired, he does a good job of disgusting me.

I need a vacation. Badly. And tomorrow I'll be getting one ... sort of. I’m going out to visit my 82-year-old mother who has Alzheimer’s. She lives with my brother Matt and his wife. Like Calvin, Mom needs hands-on help while she walks and takes stairs. She might not understand a lot of what I am saying and will have trouble expressing herself. I’ll need to make sure she doesn’t eat the wrong things or eat too fast, to ensure that she chews her food well and doesn't put inappropriate things into her mouth like rotten fruit or packets of sugar as she’s been known to do. And at times I’ll help her get dressed and undressed, just like Calvin. Man, my brother Matt and I are living strangely parallel universes as caregivers of two big babies.

I’m at my wits end, and it’s pretty frazzled there. Not only is my hair slowly sprouting gray (though I like it) I’m also losing strands of it in Calvin’s tight little fists. My hearing is going too, because lately—since the last couple of antiepileptic drug increases—Calvin has been shrieking so loudly that my eardrums rattle. I kid you not. I think I’m going to have to wear earplugs all day long just so to hear myself think.

And lately I’m pretty sure I suffer from seasonal affective disorder. The gray skies and blinding snow (which Michael likes to call radioactive fallout) are hanging around way longer than feels healthy for this west coast body and mind. I need warm. I need green. It doesn’t help that Calvin cannot manage walking in boots much less on icy terrain or in a few inches of snow. So he and I are housebound much of the winter allowing a serious case of cabin fever to bubble and spike in my psyche.

But at least the days are getting longer and generally warmer. Last week I noticed some daffodil shoots coming up through the soggy ground. Soon Calvin and I will be traipsing around in the back yard. Perhaps this summer will be the one I’ve been dreaming about for years, a summer when he can frolic outside without need of a harness or a hand to hold. I’ve got major doubts about that happening, particularly as long as he has to take serious doses of three antiseizure drugs. But at least I can dream, that is if I'm not too pooped to just slip into some sort of coma.

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Give: http://www.calvinscure.com

photo by Michael Kolster

completely retarded

We step up to the blue deli counter where Seth greets us with a pencil and small order pad in hand. “I’ll have an Ethanwich for here,” says Michael, as he grabs a Diet Coke from inside the refrigerated case.

We sit at a table against the wall watching customers come and go while waiting for our order. A familiar man reels through the door, his oversized winter coat draped lopsided on slouching shoulders so that one cuff hangs over his knuckles. Waving from across the room I say, “There’s Lloyd.” He sees us and awkwardly makes his way over, shuffling and wobbling in that unmistakable cerebral palsy way. Lloyd stands at the end of our table with a bewildered expression on his face, his eyes set between a pair of wrinkled parentheses like some Peanuts character. I smile up and say, “Hi Lloyd.” He tilts his head and with an open mouth makes a kind of happy growl. I give him a thumbs-up. After a slight pause he does the same with a warped hand that somehow mirrors his contorted body. We do a knuckle bump and he smiles.

I point to Lloyd and spell out his name using sign language. He smiles again and says, “Arrrrgh,” at which I gesture to Michael and spell out his name, too, with fist and fingers, though momentarily forgetting the sign for the “h”.

“You know sign language? When did you learn that?” Michael asks.
“I learned it as a kid, you know, because my uncle is deaf and retarded ... but just the alphabet and a handful of signs,” I explain.

Then I remember how my friend Monica and I used to sign to each other in church just to make it through the long, boring-ass services without slipping into a coma, how sometimes we'd practically pee in our pants trying not to giggle.

Lloyd ogles us as if we’re aliens from outer space, though I know we are familiar to him, then saunters over to another couple seated near the windows. The man greets him warmly though the woman seems less sure. After several minutes of Lloyd’s unrelenting stares they kindly say, “We’re going to eating our lunch now,” hoping he’ll get the hint and shove off. But he remains, fixed. They repeat themselves, perhaps unaware that Lloyd sometimes uses hearing aids and, even so, it’s unclear if he understands what is said to him. After a long awkward moment Lloyd releases his captives and moves on.

Seeing Lloyd reminded me of a scene in the matinee Michael and I had watched the previous day called The Descendants, starring George Clooney.

In the scene Matt King, played by Clooney, is driving while his teenage daughter Alex and her friend Sid sit in the backseat. Sid says something quite perturbing to Matt, who slams on the brakes and leans back to address the couple:
 
MATT (to Alex)
Your friend is completely retarded. You know that, right?
SID
Hey, my little brother’s retarded. Don’t use that word in a derogatory fashion.
MATT
Oh.
SID
Psych!  I don’t have a retarded brother!
ALEXANDRA
You suck, Sid.
SID
Speaking of retarded, I wish they would just hurry up. Sometimes I wait for them to cross the street, and I’m like, come on already! But then I feel bad.

I winced and laughed through the scene, found it amusing, pathetic and sad. I flinched at Clooney’s use of the word retarded. I chuckled when Sid lied about having a retarded brother. I winced again when Sid mentioned that he wished they’d hurry up, even though I understood his perspective, perhaps akin to those who watch and wait as Calvin and I slowly stumble hand-in-hand across streets and parking lots. And finally, I appreciated Sid’s regret at his own sorry feelings.

What a perfect scene, I thought, running the full gamut of emotions because of a single, seemingly innocuous word—retarded. Like Lloyd standing at the nice couple’s table as they first engaged and then waited—perhaps even miserably hoped—for him to hurry up, to disappear. I myself remember times in public, when struggling with a drugged-up manic, shrieking, drooling, hobbling Calvin, I wished that I could simply disappear, and then—like Sid—deeply remorseful for having had those thoughts.

Please share Calvin's story with the world. Help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com

photo by Michael Kolster

family circus

Lately I feel like I’m a member of a bona fide family circus.

Calvin, our precious little “freak” screams like a raving lunatic much of the time, especially when a seizure is brewing and/or when we’ve had to increase his anticonvulsant medication. Even I find myself gawking at him in disbelief half of the time. He’s also a good contortionist, getting his foot into his mouth quite easily from almost any position. And he could rightly be labeled Beaverboy having been known to bite the bejeezus out of cups, socks, slippers, glasses, toys, windows, cars, books and pieces of furniture.

Then there’s Rudy the dog who performs stunts like eating the corn-based cat litter and the chewy little surprise treats that are buried in it. We nicknamed him Corndog after he ate enough of the crumbly, dusty stuff causing him to drink copious amounts of water, which in turn made him poop and pee on the rug, then barf on the floor several times before going outside to retch some more. Later he proceeded to lick up his frozen puke off of the snow. We could perhaps take him on the road like some carnie. I can see it now, in neon lights or chipped paint on a carved wooden placard right next to the 14 inch woman: Rudy, aka Corndog, world's stupidest dog. Or simply, Chowderhound. If it were easy to do I could change his show name on a whim, depending upon my mood, and switch Chowderhound to Nincompooch, Dimwitdog, Bozo the Dog, Numbnuts, Jughead or Lamebrain, all of which I love the sound. But seriously, Rudy is the best dog in the world and we love him dearly.

Our recent addition to the family is Neko, the kitty who showed up on our doorstep about a month ago and kept coming back. Recently she’s been in heat, writhing all over the floor like Shirley McClain does for Peter Sellers in the bedroom scene of Being There. She sticks her butt up to any and all things including furniture, Rudy’s meathead snout and Calvin’s spinning, stomping feet. Let’s see, what could we headline her as ... World’s Horniest Pussy(cat)? Yeah.

And I haven't forgotten about the biggest freaky geek of us all: me. Although I'm not much for biting off the heads of chickens I could go on the road as any number of aliases: The Bearded Lady (since discovering a few chin hairs of late;) Christy Pipes (an alias I’ve been known as in reference to my bulging biceps, now due to the constant lifting of Calvin;) Grumpy Gertie: girl with the most furrowed brow; Madame Moody: "She’s up, she’s down, she’s up—wait ... she’s down again;" or Military Mama: "She spits bullets, she hurls profanity like a flame-thrower, she drops F-bombs like hot potatoes, she launches obscenities as if it were raining missiles. Duck!"

About the only one who seems sane around this carnival of a home is my husband Michael. He jumps through hoops, carries us on his back like an elephant. He soothes the savage beasts, feeds his clan popcorn, acts the clown to make us laugh, keeps the big top over our heads, paints smiles on our faces, brings up the lights when it’s too dark, cheers us on and very simply keeps this circus of a family on the road and working like a well-oiled, albeit slightly insane, machine.

Please share this story to help bring us one step closer to a cure for epilepsy.
Give to cure epilepsy: http://www.calvinscure.com

blood draw

One of the countless blood draws that Calvin has had to endure because of his epilepsy.

If you cannot view the video go to: http://www.youtube.com/watch?v=CHXbw0W5QS4

 Please share Calvin's story and help bring us one step closer to a cure for epilepsy.

Give to cure epilepsy: http://www.calvinscure.com

friday faves - shifting gears, changing course

In autumn of 2010 when I was on an Alaskan cruise with my sister and my 81 year old mother, who suffers from Alzheimer’s, I met another octogenarian and her husband. I had joined her during the busy breakfast rush, since there were no open tables left, and we talked and talked until her husband arrived and then the three of us talked some more.

We made such a nice connection, joking, laughing, sharing witticisms and hugging, and we have kept in touch. The other day she wrote telling me more about herself. She sent me one of her poems and talked about her writing group. She told me that in the spring she and her husband were going to be great-grandparents for a second time, and she went on to say:

As I write, I realize this may be a hard kind of news for you to read, and I almost deleted it. But then I decided I should leave it there because it is part of life, and you are forced to be a realist.

It is true, having a severely disabled child changes the course of one’s life in ways unimaginable until it happens. I find myself drifting off and dreaming of what the future might bring, and what it won’t. Of course there’s what seems obvious: Calvin won’t be going to college, may never have a job and most likely won't be able to live independently. It’s not even clear if he will ever be able to speak any words or communicate in some other fashion. And though I continue to have high expectations that he will walk by himself, I was certain he would have learned by now (I have no doubt that the anticonvulsant drugs, as much as the seizures themselves, have prevented him from meeting this milestone.) I realize that a serious relationship is improbable, if not impossible, for him and in any event not one that might produce offspring. What I worry about more, however, is Calvin simply getting the essential human touch—particularly in my absence—that all of us need as children and as adults. And yes, I have accepted the truth—but not without great sorrow—that I will never know the joy of being a grandparent.

But, as my dear friend said—and I am glad she didn’t delete it—it is a part of life, and I must deal with the cards that I have been dealt. So I change course—shift gears—to a slower, meandering, hilly path where the steep grades are difficult, though at times I can coast. This path of mine is obscure at times and holds surprise, both delightful and frightening, around every curve. But it is my path, and I’ll follow it, hand and hand with Calvin, with curiosity and wonderment until we meet the end.

A version of this post was published in December 2010.

You'd be amazed at what just one share of Calvin's story can do for epilepsy awareness. Please do.
Give to cure epilepsy: http://www.calvinscure.com

some kind of trouble

It was 1975, the start of seventh grade when I sewed my first purse cut from a pair of broken Levi’s. On it I hand embroidered a peace sign and a smattering of flowers using thick shiny thread. I could cram a lot inside of that purse and enjoyed swinging it around like a tetherball at my brother Matt or at other approaching enemies (perhaps certain boys I had crushes on.) I wore it slung over my head and shoulder, the long denim strap crossing the middle of my flat chest.

Before school I’d slip into a dress or a skirt and blouse, knee high socks and brown, wavy-bottomed Famolares. My favorite pair of bell-bottom jeans, Swaby’s, got rolled up and stuffed into my purse. I’d toss in my brush and a pair of dangly red and purple beaded suede earrings. Wielding a blistering hot curling iron, I’d form perfect waves in the thin shiny hair framing my face. More often than not I’d burn my neck and a few friends would later tease me about sporting a hickey. I didn’t know what they were talking about.

As soon as I left the house I’d duck behind the large fir tree at the top of our gravel driveway, cast off the skirt in exchange for the jeans, which were sleek and tight in a way that made me feel confident, perhaps even cute. On with the earrings and I was ready to board the steaming yellow bus headed for junior high.

I felt like an impostor, aware that no one but my closest friends might guess that wearing jeans to school, even nice ones, was strictly verboten by my parents. The offense made me nervous and jittery, like I’d had too much coffee, but more importantly, I felt cool. That was the year Lidia and I became bosom buddies, the year we both had Mr. Nudo for art. His class met way out at the edges of campus in one of those flimsy portables with a wooden ramp. Mr. Nudo, one of our favorite teachers, was a hippy dude with a big sandy-brown Afro and an earring. He wore denim overalls and soft suede chukka boots spattered in paint. From the corner of the room a transistor radio broadcast songs by The Beatles, America and Bread while we all made groovy art out of clay, acrylic paint, fabric, wax and dye. For me, and perhaps for Lidia, Mr. Nudo embodied a mild rebellion against the status quo (our strict parents) and I think that's why we liked him so much, wanted to be like him.

It was also the year that I got caught by the janitor drawing cartoons on a friend’s locker; had to stay after school to scrub down the entire bank. I had no idea I’d done anything wrong, had seen other kids doing it, too.

Before gym class we’d get suited up in our gear—t-shirts, shorts, sneakers. I envied the many girls in the locker room who were sporting training bras while I was still cringing in hand-me-down t-shirts that my dad made me wear under my blouse. So my friend Becky, sensing my shame, gave me one of her bras to keep. It was one of the coolest things I’d ever seen, all cottony and soft with mildly dimpled seams traveling across the cups, which weren’t really cups at all, just padded pieces of fabric the likes of which could hold a dollar-sized pancake, which was more than I boasted at the time. I proudly wore it home that day.

At the dinner table that night my dad rattled off his customary queries and demands: "Did you brush your hair? Wash your hands? Let’s see your fingernails. Put some shoes on." And then, "Are you wearing a t-shirt?"

With a total poker-face I replied sheepishly, “Uh-huh,” knowing he could see through my fib if he was paying any attention. I was shaking in my sneakers, had no idea what punishment I would meet. But alas, nothing happened and the next day I worked up enough nerve to ask my mom for a training bra.

When I reminisce about my childhood I usually come around to wishing that, one day, I could tell Calvin funny stories about being a kid, about his grandpa and grandma, his aunts and uncles, my friends. I wish we could laugh about the silly, rowdy, mischievous ways I’d get myself into some kind of trouble or another, like putting french fries into my coach's glove fingers or stealing pocket change out of my mom's purse. And, inevitably I wonder and dream about what kind of curious trouble Calvin might be getting into now, if only things had turned out differently, if only he were a healthy child.

Please share Calvin's story to help promote epilepsy awareness.
Give to cure epilepsy: http://www.calvinscure.com