falling down

The greatest glory in living lies not in never falling down, but rising every time we fall.
 

—Nelson Mandela

photo by Michael Kolster

dear miss christy

December 5, 2013

Dear MiSS Christy,

I think Calvin is a very kind boy. He is the second best singer I have ever seen. He is a really good walker. Thank you for comming for a presentation.

Sincerely,
N—

Dear Miss Christy,

Thankyou for coming into are class. I learned a lot it was fun hearing what Calvin can do and what he can’t. It was fun learning about epilepsy.

From,
J—
 

Dear Miss Christy,

Thank you for telling us about epilepsy. I hope that Calivn will learn some new words soon! I hope he is happy.

Sincerely,
A—
 

Dear Miss Christy,

Thank you for coming to our classroom. I am really happy for you talking about your son.

Sincerely,
A—

Dear Miss Christy,
Thank you for coming to our classroom. I thingk it must be hard to do all that work. You certainly know a lot about epilepsy. I also think you know a lot about Calvin!
From,
I—

Dear Miss Christy,

Thank you for coming in. I would like to know more about Calvin. Thank you I enjoyed it.

From,
E—

Dear Miss Christy,

Thank you for telling us about him can we learn more about Calvin? And I can tell he likes to sing And he is alot better at walking.

From,
K—

Dear Miss Christy,

Thank you for comeing to our class. I think Calvin is really nice. I learned a lot from you. I enjoyed it.

From,
K—
 
Dear MiSS christy,

Thank you for coming to our class room. I learned alot about epilepsy and Calvin. I learned that epilepsy can make you not know alot of stuff.

From,
R—

Dear Miss Christy,

Thank you for coming to our class and teaching us about epilepsy. I realy injoyed it. I hope Calvin learns how to talk, read, and wright.

From,
T—
 

Dear Miss Christy,

I really liked when you came into our classroom and did a presentation on Calvin and how it is hard to comunicate for him. I really liked how you spended you’r time coming in. I really understand how it is hard for Calvin. I really enjoyed when you were talking to us. Because it was fun listening to you. I feel really bad for Calvin that he has a disability of walking and understanding other people. I have a person on my bus who has a disability of some things too.

From,
A—

Dear Miss Christy,

Thank you for coming to our classroom to talk about Calvin and epilepsy. I learned a lot about epilepsy. I really enjoyed the time.

Sincerely,
J—

Dear Miss Christy,

Thank you for helping us to learn about epilepsy. You showed us that actualy we all have disabilities. I hope you find new ways to help Calvin comunicate.

Sincerely,
C—

Dear Miss Christy,

Thank you for comeing I relley liked haveing you here. I want to lern more about epilepsy and Cavlin was in my class in Kindergarten.

From,
S—

Dear Miss Christy,

Thank you for coming to my class. I really enjoyed you telling us about Calvin. I hope he outgrows his epilepsy.

Love,
M—

Dear Miss Cristy,
Thank you for comeing in to our class and talking to us about epilepsy. I learned alot. You are very nice just like Calvin.
Your friend,
H—

Dear Miss Christy,

Thank you for coming to our class. I really liked learning more about how brains work. I really liked getting to know more about Calvin. I love his singing! I hope more classes get to hear your important message.

From,
Mrs. Wilson
Grade 3
HBS

grade schoolers

The boy in the back raised his hand and asked, “You said Calvin stops breathing during his seizures; can people die from epilepsy?” Soberly, I answered, “Yes,” and described how during prolonged seizures the body can shut down, the heart and lungs can stop working. I made sure to explain that there are rescue medications for these situations, but chose not to underscore that sometimes they don’t work.

“Do people with epilepsy die earlier than other people?” another fifth grader asked. I did my best to explain the definition of the term mortality rate and added that those with epilepsy have a mortality rate three times higher than the general population. Then I talked about epilepsy's history of stigma, of its misconceptions of being demonic possession, of being contagious, of being the fault of the person who had it. I mentioned how people with epilepsy used to be put in prisons and institutions, and that as recently as the 1970s people with epilepsy couldn't get married and were not allowed to have children (forced sterilization). I noted what appeared to me as surprise, not only from the children but from their teacher, who sat to the side behind a desk.

For thirty minutes the children peppered me with questions and comments about Calvin and epilepsy:

Can Calvin say any words?

Will he grow out of his epilepsy?

How do you get epilepsy?

I think my dog had seizures.

I stare off into space sometimes; is that epilepsy?

My grandfather's hands shake; does he have epilepsy?

I told them that some people do grow out of their epilepsy and that in 70% of the cases the cause is unknown. I mentioned that epilepsy can be the result of genetics, traumatic brain injury, stroke or viruses like meningitis, and I underscored the problem with the drugs and their side effects. They asked if there was a cure. I said, “No,” and pointed out how the girl sitting in the front had helped raise money for Calvin and for epilepsy research at a carnival two summers ago.

That was yesterday.

Today I visited a third grade class and was happy to see a friend’s son along with several other children from Calvin’s past classes.

“How many of you know Calvin?” I began, and the show of little hands surprised me. “How many of you are his friend?” About half of those with raised hands kept them up. Two little boys sitting in front reminisced about my visit to their class last year and went on to tell the other students a bit about Calvin. Another former classmate of Calvin’s reminded me of the time she and her mother visited us bringing fresh berries for Calvin. One girl asked me if, in the event Calvin stopped having seizures, he might learn to talk. I said that I didn’t know for sure, but that I didn’t think so, and went on to explain the flattening of the learning curve as we age. They told stories about other disabled children they know, of ones who can’t talk or walk but can do sign language or use a computer to communicate.

When the questions dwindled I ended by saying how Calvin is the best person that I know, that he hasn’t a mean bone in his body, that he tries hard at everything he does and is a hero for persevering in the face of significant struggles with his health. I told them that they can be an example to the other kids in the school—even to the fourth and fifth graders—by treating Calvin with respect and by being his friend. Then the children came up to say thank you. Some of them reached in for hugs. A few gave me knuckle bumps. Others walked away shyly. I felt good, felt—as in similar class discussions—that I’d done something right, that perhaps I’d inspire these kids to treat others who are different from them with kindness and respect, reminding them, as I always do, that inside we all have the same heart.

Calvin, two years ago, with his wonderful one-on-one, Mary

contemplations

What the hell went wrong? I sometimes think, looking down upon my son’s thick head of hair and stroking it. We painted his room when I was pregnant, but I wore a respirator. I swam a mile almost every day. Was it the chlorine that soaked into my body, my lungs? I drank bits of wine here and there, like the Europeans, but not enough to dizzy a mouse. I ate well—not too much—slept well, relaxed, moved my body and felt happy. How did that one sperm, strong enough to break into that one egg, turn into Calvin, into a boy so weak and compromised who lacks the balance to walk completely by himself, the coordination to manipulate objects, the ability to understand the abstract, the words to tell us how he feels or the capacity to do most anything?

Then came the seizures. All that was before the seizures and the drugs. How does he withstand it? How do I? Do I? Barely, it would seem of late.

From all of this—and what accompanies—I seethe, at times loathing more than just my life, wondering where I am going, pondering my mortality and Calvin’s. Will I be taking care of him for the remainder of my life? What will happen to him after I die? What if he dies before I do? Will his seizures ever stop? Will I ever be able to literally let go of him and walk unencumbered by his side? Will I be able to get the hell out of here and do the things that I want to do, go where I want to go?

But, like so many things, there are no answers, only slow time. So, instead of thinking of tomorrow or next year or five, ten, fifteen years from now, I think only of tonight, of the glass of wine and the bit of sushi I’ll be nibbling with my friend Vivian, which is a long overdue and most thrilling engagement to contemplate.

photo by Michael Kolster

patience

Adopt the pace of nature: her secret is patience.

—Ralph Waldo Emerson

photo by Michael Kolster

one little universe

One house, in Maine, shrouded now in rain and clouds. One loving, mangy, grizzled shit-for-breath dog who sleeps most of the time these days. One husband-cook-photographer-professor-lover-friend-companion who makes me smile and scowl and laugh and dream. One crazy-ass nine-year-old kid who drives me nuts with his drugged-up torturous cough-whine and flailing limbs, but who also melts me into a heap of love and tears. One entire downstairs space sectioned into smaller ones adjoined by open passages and lit with natural and incandescent light warming my soul. Eight vials of rectal valium placed in various inconspicuous, conspicuous spots awaiting the arrival of one big, bad seizure. One bookcase, one table, one pair of shutters, one tray all scraped, worn and stained from years of our son’s gnawing and drool. One guitar standing alone against the wall waiting for Michael to play his one, decade-old original song, Why Did I move to Maine?

One yard, which I gaze out on dreaming of spring, now quenched and glistening and likely strewn with bits of Rudy poop. One strand of tiny lights framing the windows around my desk. One desk with one working laptop and another busted. One camera, one lamp, one back-up hard drive, one calendar scrawled with appointments and highlighted orange on seizure days. Two clocks ticking off the slow minutes of this oft monotonous life. One industrial-strength johnny-jump-up splitting at the seams, draped with ragged chew toys and twisted bandanas resembling, at times, Tibetan prayer flags. One child buckled into said jumper incessantly poking his eye rendering the distinct possibility of another corrective surgery.

One kitchen with the lingering smell of coffee, its refrigerator crammed with yogurt, fruit smoothie, mango and papaya, cheese and olives, chicken sausage, turkey soup, sour cream, stuffing, salad greens, red onions, avocados, mayonnaise, mustard, milk, wine and beer. Two empty bourbon bottles sitting on the counter near a half-full pan of fudge brownies. One drawer packed with Keppra and Onfi and magnesium citrate and multivitamins and aspirin and pill cutters and a bottle of unused Omeprazol and acetaminophen and ibuprofin and melatonin and deglycerized licorice and unused prebiotic and rags and bibs and syringes and pill boxes.

One library chair cradling one leather backpack stuffed with clean kerchiefs, a stack of rubber-banded hospital cards, Chapstick, a vial of rectal valium and one 1990s Nokia Tracfone for urgent use only.

Every single wall in the house stamped with dirty little handprints yea high. Every rug woven with dog hair and crumbs. Every waist-high window dappled with dried drool. Every wooden floor laced with little dust bunnies.

One upstairs room packed with diapers and wipes and suppositories and thermometers and latex gloves and pain killers and salves and creams. One crappy stethoscope. One equally crappy oxygen-saturation monitor. One baby monitor receiver hooked into the netted canopy above Calvin’s bed. One wall flanking his too-small changing table scarred with blackish kick marks. One dresser brimming with Salvation Army-bought size six and seven clothes for my nine-year-old boy. One mini flashlight for peaking in on him in the dark. One wooden stepping stool to help me reach and reposition him at night.

Two new neighbors and their parents, who all seem to be very nice, thankfully fixing up the dilapidated house next door. One small town with nice restaurants and their wonderful owners in which to drink and dine with friends.

One mother, three-thousand miles away, with advanced Alzheimer’s, but who usually still remembers my voice and, while on the phone, asks me every few minutes, “When are you coming to see me?” Four brothers, all in the West, one who doesn’t speak with any of us anymore. One semi-retired sister bobbing from coast to coast, sometimes making it up to Maine. One nurse who loves my son and makes my life so much better.

One fifty-year-old body softened by hours of writing and no real exercise to speak of, except this morning when it danced itself into a sweat to some wicked acid jazz. Ahhhhh. One face beginning to show its age, though not to worry. Several grey hairs pleasingly frosting one head. One psyche eroded by worry, weary from lack of sleep, aching from want. One memory full of travel to distant places, of fearless adventuring, of living at times amongst strangers who became friends, of another life, of old friends, of swimming in the Kenyan sea, of climbing mountains, of surfing naked in the Golden Gate. 

One quest to stop my son’s seizures and to help him feel, at the very least, a little bit better while he’s here on earth. One international village, several-thousand strong, which helps me do it. One small family who mean more to me than the world itself. One mind to write and research and to keep going strong, to never give up. One extraordinary boy who inspires me to be the best person that I can. One little universe within a larger one from which I can see a billion stars at times and dream of the endless possibilities simply because I can.

photo by Michael Kolster

stumbleupon

Today's email message sent to me from StumbleUpon:

Hi christyshake,

We've gathered a personalized selection of web pages we think you'll like. Enjoy!

Oliver Sachs: What hallucination reveals about our minds

Etymology of Neuroscience: Greek and Latin Roots of Neuroscience Words. Neuroanatomical, Neurophysiological and Neuropsychological Terminology

Ouch! It's a disability thing (blog) 

CRAZYMEDS: Finding the Treatment Options that Suck Less: for Depression, Migraines, Bipolar Disorder, Epilepsy, Schizophrenia, & Assorted Other Brain Cooties

And when I clicked on the StumbleUpon logo at the top of one of the pages, I got the image below.

Reality can sometimes be a major slap in the face.