in my path

"Why did you help me?" she asked. 

"You were in my path," he replied.

Those were the words uttered by the main characters in a movie I recently watched called, Land. More than anything else in the film, that snippet of conversation struck me, triggered me into thinking about everyone who has helped me survive and thrive in this life, particularly since Calvin's arrival. 

Countless people whose paths I've crossed came to mind—everyone from my husband and extended family to my childhood and college friends, teammates, and the swimmers I coached way back when. I thought of former boyfriends, colleagues, roomies and besties from Seattle, San Francisco and Maine. I considered my husband's colleagues and former students, Calvin's doctors and nurses, our lovely neighbors, and the clerks at the grocery store. As I write this I think of the friendly strangers I've encountered by way of this ten-year-old blog, and while driving the back roads during the pandemic. Every single one has helped me get through this difficult life of raising a disabled child with an impossible, chronic condition.

Perhaps it was you who held my elbow or hand while I laughed, wept or wailed. You might have silently listened to me grieve. You may have offered to do my shopping, cooked us meals or left goodies on the doorstep. Perhaps you've brought me flowers, written me kind and loving sentiments in a hand- or type-written letter, email, message or text. You might have hugged the breath out of me just when I needed it most. You may have unwittingly buoyed me in the fleeting moment you ran, skated, strolled, drove or biked past.

And then, of course, there is Calvin, my peculiar little boy who has helped me—bettered me (mostly)—in myriad and indescribable ways.

In return, I certainly hope I've helped you, friends, loved ones and readers, in some small ways, if only by a few written words or by something as simple as a photo of a field full of dandelions dipping into the bay.

the ice man cometh

This weekend, the current administration has plans to raid our communities in search of unauthorized immigrants to deport. This will inevitably mean that the families of some of our neighbors will be split and splintered. This means that good people who have integrated into our communities, who contribute to society, many who build our homes, care for our children, cook our food, clean our hotel rooms and homes, harvest our crops, package our meat, and who pay billions in taxes, will be torn from their loved ones and their homes. This means that people, some who have lived in this nation for decades, many who have American wives, husbands and children, and whose children are dear to our own, will be forcibly taken, put into detention and face deportation, their only offense having been to flee hunger and danger, to seek a better life for themselves and for their families, to have claimed asylum.

Keep in mind these ICE (Immigration and Customs Enforcement) agents will likely not be targeting undocumented European or Canadian immigrants. Why? Because this is a racist policy put in place by a racist administration targeting Black and Brown people who fled from nations south of "our" border. This is an example of White Supremacy. Beware, American citizens will also be swept up in these raids because of the color of their skin. Like this administration's proposed census question, its neglect of Puerto Rico, and its Muslim ban, racial profiling will be at work.

Once again, I am reminded of fascist Germany's Nazi raids of homes like mine, in the kidnapping and detaining of disabled, infirm children before going after other "undesirables"—Jews, homosexuals, Catholics, non-White Europeans. It can happen again, even in this nation, lest we forget our government's internment of Japanese Americans during World War II. Like some Jewish American activists are doing, we should be protesting these seizures and detentions of refugees. We should be shouting, "never again!"

And when it happens, these immigrant and blended families will be left in shambles. Their breadwinners and caregivers will be arrested, detained, deported. Their children will be orphaned. Their communities will be shaken. Their families may never be reunited. We should imagine their fear as our own, and condemn this administration's actions.

Keep in mind these immigrants and refugees who, study after study show, make our communities safer, have committed no crime by claiming asylum on land that was stolen from its natives by many of our White ancestors, its prosperity largely built by slaves stolen from their native lands. These immigrants and refugees are not "illegals." Ironically, their ancestors may have lived in what is now Texas, California, Louisiana. These people are human beings. They love and toil and grieve and bleed just like the rest of us. We have room for them. We'd do better, be better, if we welcomed them. Remember the quote at the foot of our Statue of Liberty:

Give me your tired, your poor, Your huddled masses yearning to breathe free, The wretched refuse of your teeming shore, Send these, the homeless, tempest-tost to me, I lift my lamp beside the golden door!

Yes, the ICE man cometh. He will wreak havoc, tear wounds in our communities, rip apart families with his sanctimonious contempt for those he sees as threats to his privilege. But know that he is ignorant. Know that he stands on the wrong side of history. Know that his power is withering, his reign limited. Still, beware his acts of desperation. Shelter, if you can, these innocents from the ICE man's chilling grip.

Photographer unknown

little trooper

When I found him he seemed barely alive. His eyes were still closed, his sleek, gray body scarcely bigger than my thumb. I wondered what had happened to his mother, where his nest was, how he ended up on the dirty garage floor and if she’d come for him. I tried giving him some milk and water from a dropper I’d saved from Calvin’s countless medicines. Without intending to, I got some on his nose—no bigger than a pin head—so I tried to dab it off as best I could. From somewhere behind me I heard a peep, so since he wasn’t taking the fluid, I decided to make him a little corner nest of dried leaves, hoping his mother was nearby and would come to his rescue. But I was bracing myself for the fact that he probably wouldn’t survive the night unless she did.

The next morning when I went out to the garage the mouse was gone. I thought maybe Michael had swept him up to save my feelings, but when I spun around I saw him lying in the middle of the garage having been squashed under a boot or a motorcycle wheel. I cried. I kept thinking of Calvin and how tiny and defenseless he was when he was born, how his eyes were closed, too, until he heard my voice. Like this little mouse, Calvin was feeble and without his mother to suckle, at least for the first week of his life when he lived in a nest by himself, not of leaves, but of wires and leads, bright lights, buzzes, tubes and Plexiglas walls.

As carefully as I could, I scooped the mouse into a shovel, took him out to the garden and buried him at the base of a tiny, white rhododendron I call Midge, the only shrub in the yard that has a nickname. I told Michael what I’d done.

“I found two others,” he said, explaining that, very regrettably, he had stepped on one. He led me out to the garden to show me where he’d put them so I could bury them with the other.

“That one’s still alive!” I cried, shocked that it had survived the cold night.
“Well, he’s a fighter,” Michael said, “Maybe you can see if he'll live.”

He picked up the tiny thing while I went to find a small box which I filled with tissue paper. I tried again to give the baby mouse some milk and water, clutching it gently in my fist. After trying a little while I was surprised that he grasped the tip of the syringe and suckled. He drank a lot then pushed it away like Calvin does, so I laid him in his makeshift nest, closed the slotted lid and propped it up under the warm bulb of the oven hood. Then I went online and read that in my haste to rescue him I’d made a mistake in giving him cow’s milk, which can make them cramp or bloat and sometimes die. I read that baby mice this young, less than three weeks old, need to drink diluted kitty replacement milk, a kind of formula, so I took Nellie for a walk to the feed and farm store while the little mouse rested alone.

Upon my return, the mouse seemed a little livelier and had pooped, which I took as a good sign, but when he breathed he made a little clicking sound, causing me to think he got fluid in his lungs. I tried to give him a little of the formula, but he pushed it away, so I massaged his eensy belly with my fingertip, trying to help him digest the cow’s milk and eliminate gas, like I used to do for Calvin. Every two hours I repeated my efforts, but the mouse continued to shun the formula. I held him in my palm for moments at a time and stroked his back. I was heartened when, every once in a while, he’d rub his muzzle with his tiny paws or work up enough spunk to crawl over my hand. Not wanting him to tire, I let him rest again in his box. By the time Michael and I sat down for dinner our mouse hadn’t drank in almost eight hours.

“What should we call him?” I asked Michael, “We should give him a name.” We'd done the same for Calvin before he was born having learned his health was greatly compromised and that he might not survive.

“Turkey?” Michael suggested, which is what we call Calvin when he’s being a turkey.
“Mousy?” I said, remembering that we called our orange canary, Birdie.
“How about Trooper?” I added, since he’d put up such a good fight, and Michael agreed.

We wondered about the spelling, so we looked it up and it appeared the “oo” and the “ou” version can both be used to describe someone who is dogged.

For the next several hours I kept checking in on our little Trooper, whose box we’d wrapped loosely in an electric blanket. I checked on him again at eleven-thirty when I awoke to Calvin’s cough, and by that time our mouse barely responded to my touch and still wouldn’t drink. I felt he was perhaps too hot and it seemed clear he was fading, so I turned off the blanket and left him alone for the rest of the night. By the next morning our little Trooper had died.

Why hadn’t I taken him inside the first night? I should've looked on the internet earlier. If only I hadn’t fed him cow’s milk. Why didn’t I get my glasses before I tried feeding him the milk so he didn’t get any on his nose and breath it in? I should’ve followed my gut about the electric blanket. I think we worsened his dehydration. Why couldn’t my sweet little Trooper have lived?

Like any mother of a disabled child might, I ask myself these same kinds of questions and have these same regrets when it comes to Calvin. I try my best but somehow, sometimes, my best just isn’t enough. Sometimes, no amount of conviction or research or effort or confidence or tenacity or positive thinking or anticipation or preparation or prayer from others seems to change the outcome of things. I just do my best and hope for good results, but there's no guarantee that my other little Trooper, Calvin, who, unlike most children, must deal with so much adversity, will remain healthy and thrive simply because I try.

Little Trooper resting in my palm

mr. sullivan's kids

Yesterday, I visited Mr. Sullivan's fifth grade class at Calvin's school. Each year, a handful of teachers take me up on my offer to come and speak with their students, grades two to five, about Calvin and epilepsy. To be honest, and though I know the teachers are uber-busy, I've been dispirited by the lack of interest, though quickly buoyed when I visit the few who take me in.

Upon entering, the kids gathered around my feet at the front of the room. By a show of hands it looked as if all of them know who Calvin is, even in a school of six-hundred kids. I started by telling them that he was born six weeks early missing part of his brain—some of its white matter—its super highway, I called it. I told them that it takes Calvin a really long time to learn things, which is partly why, at eleven, he is only now beginning to walk completely by himself, the other hindrance being the drugs he takes for epilepsy. I talked about those and mentioned the cannabis and went on about everything in between.

Then, I opened it up for questions, inviting them to ask me anything about Calvin and about epilepsy. Their questions were good. Here are just a few:

Is he allergic to any foods? What activities does he like to do? How long do his seizures last? How many does he have? Even though he can’t talk does he like to make sounds? What kind of music does he like? Can he do things with his bones?

I told them:

He’s not allergic to any foods though he is on a gluten-dairy free diet. He loves to walk and trike and eat and hug and laugh and get tickled and spin in his johnny-jump-up. He has about three or four seizures a month which usually last several minutes, though once he had one that lasted nearly an hour. He loves to make sounds and said, MAMA, once, before the seizures and the drugs. He loves upbeat music. His bones seem strong but he lacks good coordination, partly because of the drugs.

I mentioned that not all people with epilepsy are like Calvin, that in most cases you’d never know it unless they told you or you saw them have a seizure. I tried my best to define words like prevalence and stigma and debilitation and addiction and side effect.

When I told them that Calvin’s only sign is for the word hug, a sweet girl to my left squirmed with delight, twisted her arms into a pretzel and said, "That's so cute!"

Mr. Sullivan noted how Calvin's eyes appear much brighter in his baby pictures than they do now and he wondered if it was because of the epilepsy. I surmised that it's likely stupor caused by the drugs, then added that Michael reminds me often that photographs don't always reveal the truth.

I instructed the children on what to do if they see someone having a seizure: protect their head, clear away any potentially harmful objects, put them on their side in case they vomit and to never, ever, put anything into their mouth. I told them to point to a specific person and say, “You! Call 911!” because, if left up to bystanders, the call might never be made.

“But that might make that person feel uncomfortable,” one boy remarked.

I went on to explain that, in life, it isn’t bad for us to feel uncomfortable when we are faced with supporting a good cause or standing against something that is wrong—like defending kids who are being bullied—and that stepping out of our comfort zone often helps us grow.

As I said this, looking into the students’ eyes, I imagined other examples needing compassionate support. I thought about gay people facing sanctioned discrimination led by a bigoted Christian Right. I thought of black people oppressed by this country’s racial caste system, of sons and brothers, husbands and fathers being stopped and frisked, shot unarmed, imprisoned by legions, discriminated against in every aspect of life. I thought about the people with autism and Down syndrome who’ve been assaulted by security guards sometimes leading to their demise. I thought about women who are cat-called, misjudged, beat up, underestimated, patronized, ill-treated and systematically over-looked, underpaid and over-charged, their bodies regulated by conservative congressional men. I thought about the immigrant who is misunderstood and maligned and the fast food worker who is overworked and grossly underpaid and the homeless gents who are displaced, neglected, doused, beaten, burned and sometimes shot.

I ended by telling the students what I always do, which is that Calvin is the best person I know because of his his purity, tenacity and boundless reservoir of unconditional love. And as I left the class I thought, if just one of Mr. Sullivan's kids grows up to be a champion for others less fortunate than themselves, the world will be a better place.

gift of a song

You are my sunshine, my only sunshine
You make me happy when skies are gray
You'll never know dear, how much I love you
Please don't take my sunshine away

The other night dear, as I lay sleepin'
I dreamed, I held you by my side
When I awoke dear, I was mistaken
And I hung my head and I cry

While sitting with my girlfriend beside a rolling fire, a bourbon in my palm, I hear my son sputter, choke and gasp for air. “That doesn’t sound good,” I say, and I sprint upstairs to see Calvin having a seizure in his bed. Teresa comes up to join me and we crouch at Calvin’s side caressing his face and body. In the dim light I can see that his cheeks are flushed and patchy, and he whimpers and clicks and swallows and whimpers again before trying to suck his thumb.

Teresa had arrived just before I put Calvin to bed. From upstairs I’d heard her let herself in, so I called for her to come up. Once upstairs she rounded the corner, greeted me with a hug then joined Calvin on the floor of my bedroom where he was mouthing his favorite toy, a plastic singsong book with a big yellow light-up button that, when pushed, says, “Hi there! Sing with me!” I watched her kneel down, pat and rub his back while talking to him. Her fearlessness and ease impressed me. “Very few people engage with Calvin that way,” I told her. “Most keep at arm’s length.” She went on to explain that her comfort level was probably due to the fact she sees Calvin so frequently at school, but I know differently. It’s just the way that she is. Open. Loving. Unafraid. Compassionate.

After Calvin's seizure, as she strokes his head, Teresa begins to sing You Are My Sunshine in a soft, soothing voice. It’s as if she’s done it a million times before. As I hear her words, her gift of a song, I realize that Calvin is my only sunshine, my only child, and even though he’s tough to take at times I know it’s not his fault. When she gets to the part in the song where it says, “please don’t take my sunshine away,” I find myself silently saying it with her, knowing full well epilepsy can do that sort of thing, can take our children away. Soon, Calvin's lids become heavy and we watch him drift off to sleep under the netted canopy, under invisible stars, under the waning moon that hangs in the sky overhead and under a velvet melody as if written just for him.

sharing the load

As kids, one of the first things we learn from our parents is to share: to share our dolls, toy cars and Legos with our siblings, to share our favorite snack with friends, even to share time on the playground swing set with a stranger’s child. Then, as soon as we can speak we are taught to tell the truth. And when we enter school we are told not to cheat on tests, and even if we succumb to the temptation (I did a few times) we know in our hearts that it is wrong. In sports, we learn that an unfair advantage, such as steroid use, is unacceptable, and that everyone should have the same opportunity at winning the gold. And as I think about 9/11, its eleventh anniversary upon us, I remember the way that the people of New York—of our nation—came together, helped out their fellow man, the strong pulling the weak out from under the rubble when they couldn’t get out by themselves.

What’s so different today? I wonder. Where did these core values, these basic premises of human decency get so blurred, so skewed, so completely forgotten by some, by those so eager to get ahead that they'll stomp on the backs of everyone else along the way, never once looking back to lend a helping hand? I ask myself the same question over and over and over.

Readers sometimes comment on my blog, noting the theme of how it takes an entire village to raise a child. They understand that I find strength in friends and neighbors who sometimes help me with the burden of caring for my disabled boy. I’m better for it, and my friends tell me that they are too. I can see in their eyes the great reward in knowing they are helping me out. And they don’t have to; most have children of their own to rear, stresses of their own to face, problems to solve, desires to sate. But no matter who we are, we each have a gift—something special to offer. What a shame if we kept those gifts to ourselves, tucked them away into little boxes and shoved them under our pillow or to the back of a drawer for safe keeping.

Since Calvin’s epilepsy diagnosis over seven years ago, one of my greatest rewards has become helping other families whose children have just been diagnosed with epilepsy, Down syndrome or other debilitating neurological conditions. Through Calvin, I have learned that I, too, have a gift. I want to share it with the world. And what an amazing world this could be if each and every one of us shared a bit of what we have—whatever that might be—with others. If only we could think of this wonderful melting pot of a nation as our precious village, one in which we look out for each other, help each other out, lift each other up. I imagine Bedford Falls, the town depicted in Frank Capra’s film It’s a Wonderful Life where—because of one humble, honest, hard-working, self-sacrificing man—others who’d had a difficult start in life, who were down on their luck, could get a leg up. And those recipients in turn contributed and enriched the community with their talent, hard work, brotherhood, generosity, gratitude, hope, compassion and the jewel of a different perspective.

I think back to April 2012, to the time when Michael was away for over three weeks and Calvin was at his all-time worst behavior, screaming much of the time, not eating, yanking my hair and flailing wildly in his high chair. I couldn’t be sure of the source because he can’t tell me, but I blame his anticonvulsant drugs (and now I know it to be true.) In Michael’s absence, my dear friend, Akiko, flew up from New York to help me for a long weekend. On the heels of her departure my sister, Caron, came all the way from San Diego and stayed eight days. She watered the plants, vacuumed the house, dusted the furniture, washed loads of laundry, fed Calvin, changed his diapers, walked around with him, made me laugh and very simply liberated me. On each of the other weekend days after my sister left, different girlfriends came to help me take care of Calvin for an hour, or so, so that I could get some chores done and to give my shoulders, back and psyche a break. And, there is no doubt in my mind that if I had asked any one of my neighbors the same, they’d have done it too.

Camaraderie and support: that’s where it’s at: the reaping of the many rewards that bearing the load together brings, of being responsible to each other and for each other. So, how the heck do these ideals gets lost on some people? I can only imagine that when one hides something away for fear of losing it, it’s easy to forget that it’s even there to give.

photo by Lyle Owerko–Gamma

unforgettable

She says, with tears in her eyes, that he is unforgettable. I can tell that she loves Calvin. She tells me that he reminds her of our mother, something that I’ve thought before numerous times, although he’s got his father’s and grandfather’s clear blue eyes.

She's here to help and to learn and perhaps one day to watch our boy so Michael and I can get away for a night or two.

Her patience is long, longer than mine of late, enduring my grumpy cussing and sharp words, enduring Calvin’s hair pulling and occasional shrieking, his stubborn refusal to walk where we want him to go. In a swift move to avoid a catastrophic shit storm she grabs a wet washcloth and scoops up a handful of loose stool oozing out the top of his diaper and onto his pants, shirt and highchair and onto my knee. “Jeez, Caron,” I say, most impressed with her speed, finesse of the cloth and utter lack of repulsion.

Later, she gets on the phone with Mom, who lives three thousand miles away.

“I need you,” Mom says to her, and asks when she’ll be visiting.
“In a couple of weeks,” Caron replies, giving Mom her standard answer of hope, the endorphins of which will last in Mom’s brain for hours even as the memory of those same words fades.
“Goodie, goodie,” Mom pipes in a gravelly voice.

She hands the phone to me and I joke and quip to make Mom laugh while Caron plays with Calvin in the jumper. I ask Mom how the weather is and she does her best to tell me, “The windows ... the things are up ... and I can see there’s white up there.” I ask her if it is cloudy and she says, brightly, something like, “That’s exactly ... you know what it is,” and it’s clear that she knows and appreciates that I get what she is trying to say.

We say I love yous a couple of times over and as I hang up the phone I wonder, as I often do, if it might be the last time I’ll hear her tender voice.

Calvin is giggling in the jumper, wantonly pulling Caron’s hair. Before the moment is lost I grab my camera and snap a few, the results of which somehow remind me of my childhood days with Mom. And then I see a glimpse of my boy's smile and forget about my frustrations and lack of patience and think, like she, how truly unforgettable he is.

Calvin and Caron

tag teaming

The cardinals outside a downstairs window are working hard to feed three or four chicks nesting in the shelter of a large rhododendron. Rain comes down hard at times, and steady. I notice, out the window at the base of the stairs, that one of the chicks has flown the coop and sits puffed up like a ball of fuzz in the hydrangea awaiting its parents to feed it bits of food. The parents tag team, bright red father then brown mother with her day-glow orange beak. They seem to be trying to draw the chick from its perch, the little defenseless birdie with no tail to speak of.

Upstairs, and in Michael's absence, my lovely friend Lucretia minds my chick as he sleeps in my bed, dried vomit on his face and sleeves and on the towel I used to catch it. My robe is sour and stained, my hair tangled with the same pungent spit up. He puked up his seizure meds while in my arms not long after I gave them. I picked out the half-dissolved ones from the yellow, frothy, phlegmy goop, redosed them when he woke up and gave him an extra Clobazam just in case.

Lucretia arrived before eight. She hugged me and rubbed my back and brought me coffee and slept with Calvin and stripped the beds and made them up and hugged me some more and told me she could stay as long as I needed. I took a shower and put in a load of stinky laundry. We sat and ate warm oatmeal while Calvin recovered some in the jumper. My little bird still isn’t eating or drinking. The chicks outside are famished.

All parents work so goddamn hard, I think, harder even when their kids are sick, some impossibly so. Thank goodness for the tag team. Thank goodness for Lucretia.

me and Lucretia

motoring

"He's an outlaw, he's a One-Percenter, he's a rebel that gives good bikers a bad name.  He just wants to be free; free to ride without being hassled by The Man!"

—Steve Shake, Calvin's unceasingly humorous uncle, upon seeing a photo of Calvin riding his trike.

Oh, and he's really not the kind of one-percenter that you might think.

Scroll right or click on the photo to see entire image.

photo by Mary Booth

effort and empathy

When we stop doing things for ourselves and expect others to dance around us, we are not achieving greatness. We have made ourselves weak.

―Pandora Poikilos, Excuse Me, My Brains Have Stepped Out

Yesterday, my nine-year-old disabled son Calvin and I did something we've never done before. We went grocery shopping using a cart ... but this time he wasn't in it. He was pushing it.

I positioned his slender fingers and thumbs around the bar, in the center of which I snapped two reusable shopping bags to prevent him from biting or bonking it. Then, from behind, I held my hands on top of his so that he wouldn't release his grasp and fall off balance. We shuffled like this from the berries to the apples to the bananas to the avocados. We were slower than the slowest of slow shoppers. My friend Tahnthawan appeared and kindly asked if she could help get some of our groceries—all of them, in fact. I told her no, that this was something we had to do, that I had to teach Calvin how, otherwise I'd never be able to go grocery shopping unless someone else came along. I saw her pained, compassionate expression in the form of a slightly stitched brow, and she came around later and lovingly commended me for being a hard ass.

Calvin and I began navigating slowly through the aisles from the coffee to the milk to the paper towels. He was the most obedient and patient that I've seen him for a while and we eventually managed to get everything on the list.

Then for five or ten minutes we stood waiting in line at the pharmacy, something I do all too often because of his epilepsy. Calvin whined and careened and scratched and pulled for me to pick him up. He batted my face and rubbed his head hard against mine clearly wanting to get going. I remained patient, a new promise I've made to him and to myself, and told him what a good boy he was being. The man behind us, while fishing into his pocket, asked if Calvin liked pictures. I replied, "not really, but thank you." Calvin squirmed and fussed for another several minutes as I signed for the drug then commenced our escape.

As I set Calvin's hands back onto the cart again, the man, a rugged fellow probably in his late fifties with rough-cut, short reddish hair and a gold loop earring, raised his hand in a high-five. As I slapped it he said, "I was in the military for years," no doubt in my mind a remark on knowing hard work. "I don't mean to be patronizing," he continued, to which I replied, "Oh, no, not in the least. I appreciate it." I went on to say that my father attended the Naval Academy, perhaps explaining my work ethic, to which the man tipped his head in solidarity. And as I steered Calvin and the cart away from the man while passing a line of gaping customers, I held back tears of pride and joy, sorrow and effort and the pleasure brought by a simple stroke of human empathy.

photo by Tahnthawan Coffin-Gartside

nobody need wait

How wonderful it is that nobody need wait a single moment before starting to improve the world.

—Anne Frank

Anne Frank, June 12, 1929 – early March 1945

change the world

Never doubt that a small group of thoughtful, dedicated citizens can change the world. Indeed, it is the only thing that ever has.

—Margret Mead

photo by Valli Zampini

compassion

Compassion is an unstable emotion. It needs to be translated into action, or it withers.

—Susan Sontag

Senior Chief Hospital Corpsman Huben Phillips holds a young earthquake victim that he helped evacuate, on the USS Bataan, off the coast of Haiti, January 20, 2010. UPI/Kevin Dietsch

elephant man

It’s a beautiful, disturbing charcoal dream: a silent howling woman in a slow-motion blur of hair and teeth, groans of pounding gears and hissing steam, the haunting roar of an enraged elephant. It’s the opening scene of The Elephant Man, but the dream shares the gloom and rush of blood from a recurring dream I had as a kid, throbbing through my ears. In my dream a huge boulder thunders down a steep jagged butte headed for a tiny baby, sitting in a meadow at the base of the slope. A single hair on the top of the boy’s head plucks like a harp as the gigantic stone approaches; it’s looming shadow finally engulfing the infant’s oblivious form just as I wake up.

The film, based on fact and directed by David Lynch, remains an all-time favorite of mine since first seeing it nearly thirty years ago. In an outstanding performance John Hurt plays John Merrick, an abused, circus "freak" in late 19th century London, who is discovered by a physician, Frederick Treves, played by Anthony Hopkins. Merrick suffers from a congenital defect that has rendered him hideously deformed, crippled and dying.

Merrick is at first assumed an idiot, a simpleton. He lives behind a burlap bag with one oblong hole cut out to see beneath a slouching black cap. The rest of his body is hidden under a dark cape. He’s beaten, humiliated and abused by self-serving individuals throughout the film. He goes from being gawked at by circus goers, assaulted by his manager and nakedly scrutinized by curious physicians. At one point, Treves, who has taken Merrick under his wing, asks himself, “Am I a good man ... or am I a bad man?” for having subjected the innocent soul to the perverted ogling of some in high society. Yet, through all his tortures Merrick remains as grateful as one whose life had been saved, and indeed, his had been.

Watching, I found myself entranced by Merrick’s left arm and hand that appear and function normally. I was spellbound by his hand’s beauty and perfection revealed in shocking juxtaposition to the rest of his disfigured, monstrous form. For me, his hand became the oddity and I could not avert my gaze. And in his slender fingers I saw beauty and grace that mirrored itself in his gentle spirit, his kind heart, if not even in his perseverant, lopsided, dragging gait.

Midway through the film I heard Calvin whimper in his sleep. I ran upstairs to learn he had dirtied his diaper. Michael came to help. Half asleep, our sweet boy rubbed his head, stretched and writhed in a dreamy drugged-up stupor. His cheeks were pink, his hair tussled, his belly soft and smooth as dough. He’s so beautiful, I thought, so innocent, and I kissed his warm forehead. My heart winced with love as I realized, gazing at him, that my boy’s brain is as messed up as the elephant man’s contorted frame.

I wondered about that recurring dream; imagined it as some sort of harbinger or omen of what was to come, of some gigantic invisible rock that had smashed my boy’s brains to smithereens yet somehow preserved the utter perfection of his body. And I realized that these two innocent souls, John Merrick and little Calvin, are the same: both crippled, disabled, devastated, yet both filled with the kind of love and grace and beauty sometimes difficult to discern in the ordinary.

Joseph Carey (John) Merrick , August 1862 – April 1890

friday faves - aid of others

A while back Michael and I watched the 1946 film The Best Years of Our Lives. A beautiful black and white classic, it tells the story of three World War II veterans returning home from battle after their long deployment.

One of the soldiers, handsome young Homer, had both of his hands burned off while overseas. Each had been replaced by curved steel hooks, which he employed with great mastery, even striking a single match to light a cigarette.

The film beautifully explores loss, grief, desire, and transformation in a series of poignant scenes. One that deeply moved me was with Homer and his father. After supper, Homer goes upstairs to ready himself for bed. He takes off his coat then somberly calls down to his father saying something akin to “I’m ready, Pop.” Momentarily, his father enters the boy’s room and, in silence, helps Homer take off the leather harness supporting his prosthetic arms. He lays the hooked devices aside then assists his grown son into a pajama top. Homer, barely a man, swallows his pride, keeps his chin up and his eyes averted while his father slowly buttons up the front of his nightshirt. The intermingling of shame, pity, love, helplessness and gratitude are palpable, as the viewer understands that Homer is destined to rely on the aid of others to do simple and intimate things.

Often, when I help my eight-year-old son Calvin with dressing, my heart floods with these same emotions and my mind these same thoughts. Though I feel no shame, I am immensely sorrowful of the great challenges Calvin faces in doing the simplest of tasks. As an example, when I put his shirt over his head Calvin can pull it down over his face but then he needs help putting his arms through the holes. He seems to be improving on these skills—albeit slowly—and for that I am grateful, though I worry one day his development will plateau, or worse yet—and because of his epilepsy—regress.

Loving Calvin with the depth of my soul I would do anything for him, but that doesn’t stave off feelings of helplessness—that no matter what I do and no matter how many hours we toil at any given task—that Calvin will likely remain in a place where he too, will always be reliant on others to provide for his most basic needs. And at night, when my emotions run at their highest, comes a paralyzing dread as debilitating as any, which is my fear of the future and the great unknown it harbors, if perchance I can no longer be there for my boy.

But like the young soldier, my Calvin is loved beyond measure by those closest to him, and so will receive succor even in my absence. And perhaps too, as Homer did for his loved ones, Calvin can inspirit others to undergo a transformation toward selflessness, similar to that of my own.  By seeing Calvin’s desire to succeed in the face of great adversity, always exuding a most pure and humble spirit, I aspire to gain patience, appreciation and acceptance, not only for those who need help but for those who selflessly give of their own.

A version of this was originally published in January 2011.

Please share Calvin's story. Help bring us one step closer to a cure for epilepsy: http://www.calvinsstory.com

Give: http://www.calvinscure.com

Calvin with his friends Kim and her daughter Ellis

join the ranks

Nearly one hundred ravenous guests dined on uber-fresh maki rolls, salmon lox and cream cheese, fresh cheesy pizza, amazing Mediterranean munchies, mini savory quiches and piles of the best chips, salsa and guacamole this side of the Mississippi before moving on to homemade chocolates, the worlds best carrot cake and the most sinfully delicious profiteroles you can imagine.

Yes, a good time was had by all at last night’s fourth annual cure epilepsy benefit. We were all treated to live music by two talented local bands alongside an open bar serving beer, wine and bubbly water. All of the aforementioned were donated—the food, the drink, the bartender’s and musicians’ time, the help from my friends setting up and breaking down the joint.

To top it off, Michael’s parents flew in from Florida and surprised us both yesterday afternoon. They had me in complete tears. A couple of friends even came up from New York. I said to Michael that it felt like a grange hall wedding, looking out over a gaggle of some of my most favorite people crowding the warm, wood-paneled barn. My father-in-law even wore his shiny red rubber clown nose, having not done so at a gathering since Michael and I were married.

With only a few days left in this year’s campaign we’ve raised close to our $15,000 goal. We did it with the kind and generous support from all those who attended the event and many other benevolent spirits from both near and far. My ambition is to exceed that goal and we can do it, but only with your help.

Join the ranks—the superheroes—and please give what you can to epilepsy research on behalf of Calvin’s eighth spin around the sun (no small accomplishment) and the fifty million people and their families who suffer from this lethal, stigmatized, neglected, trivialized and grossly under-funded disorder. http://www.calvinscure.com

Superheroes Martin Mackey, (me), Jen Baldwin and Maura Bannon

do the math

On this, the day of our 4th annual CURE epilepsy benefit, this is all I have to share. You do the math:

National Institute of Health Annual Funding 2010: 

Affliction:                  Funding $$    Annual deaths:

                                        (in millions):

HIV/AIDS                     $3,160                18,000

Breast Cancer               $778                   41,000

Alzheimer's Disease    $458                   75,000

Epilepsy                     $137                  50,000

Please help level the playing field and donate to critical epilepsy research at: http://www.calvinscure.com

photo by Michael Kolster

friday faves - don't mess with this chick

I always wear a backpack, messenger bag or a satchel with a long strap over my head and shoulder. I never carry a purse. At first it was merely my preference, but now I make a habit of it.

One day, back when I was living in San Francisco, I was walking from work to the bus. I strolled along the Embarcadero, then veered onto a grassy path, which meandered through an office complex. Suddenly, a man rushed up behind me—I felt the air he pushed—and he swiftly hoisted my black knit skirt high above my waist.

Incredulous, I stopped dead in my tracks, my black leather zip-up high-heeled boots planted firmly on the ground, feet slightly apart, my wide backpack strap secured diagonally across my chest. I calmly asked him his name and, as if I had approached him in a smokey bar, he told me with a sleazy air of confidence. Then I asked to see his driver’s license, which seemed to snap him out of his illusion and into the reality of his crime. Simultaneously, I noticed a group of onlookers standing behind a large, full-length window a few feet away. The guy bolted so I lunged at him and, with one hand, snagged a belt loop on his navy corduroys and wrung the back of his shirt collar with the other. “Call 911!” I screamed at the bystanders, certain they could hear me through the thick glass.

The culprit freed himself, tearing his shirt collar and ripping off the belt loop, then he sailed down the path. I darted after him. As the villain approached the main street spectators started emerging from their offices. He turned the corner—out of my sight for a second—but was blocked by a young man carrying a portfolio. The crook began to act like nothing had happened, but all the while I was yelling the details of his offense to an attentive crowd that had formed. I positioned myself in front of him on the sidewalk to prevent his escape. As he continued to deny his crime a woman appeared and exclaimed, “he did it! I saw the whole thing and the police are on their way!” At that moment he tried to get past me, but I pushed his shoulders and shoved his chest hard, pinning him between the cars and another man who had stepped in to assist me. I continued to preach to the crowd, “if this guy gets away with this he’s gonna to do worse things” and then, to my assailant, “don’t mess with this chick.” He made a final run for it just as the cops peeled around the corner and cuffed him. Fortunately, I had been hands-free because of my backpack, but I couldn't have overcome him without the help of a lot of great people—all strangers to me, and yet my friends.

I never met with another nasty foe until almost six years ago. That was when Calvin was diagnosed with epilepsy when he was just two years old. At first, I had no idea what we were up against, but I soon learned that epilepsy would become my greatest adversary, and Calvin's too.

When it comes to finding a cure for epilepsy, this most violent offender, I cannot do it alone, not even in those kick-ass boots. Calvin and I need the help of others, of you—our friends—and of strangers. That's why I am writing the blog. It is why I am asking you to donate to epilepsy research. You will be nothing less than a superhero—Calvin’s superhero—and you’ll be bringing us one step closer to a cure for epilepsy, our only hope for arresting this hateful disorder.

Please donate to epilepsy research at: http://www.calvinscure.com

A version of this post was published in February 2011.

drawing by Christy Shake

compassion is a verb

Compassion is a verb.

 ―Thich Nhat Hanh

Lying in bed last night I got to thinking, the tangled lattice of gently swaying pines outside our window is good for that—mesmerizing. I began to contemplate what it is that motivates people to give charitably—or not to.

I wonder if people give to causes like cancer research, world hunger or disaster relief because they know someone who is personally impacted? Do they give because they know their friends give? Do they give because they truly want to make the world a better place? Do they give because they are compassionate, selfless and loving? Do they give because of their faith, their conscience?

On the contrary, what makes able people decide not to give? To ignore the meager tin cup with its begging coin slot sitting on the grocer’s checkout counter—you know—the one with the photo of the sick child? To walk unflinchingly past the homeless woman asking for nothing more than pocket change or food? What makes someone ignore appeals for aid when they’ve got ample resources to help? Is it fear? Avarice? Mood? Judgment? Apathy? Righteousness? Ignorance? Though, regrettably, I myself have neglected to give when I could have, I still can't claim to know the motivation of others. And although I am not a religious person, and as silly and cliche as it might sound, sometimes I find myself reflexively asking, what would Jesus do, albeit assuming he had sufficient funds?

The only thing I can figure is that those who choose to give charitably are either born with the capacity for compassion written deeply within their DNA or they have perhaps suffered some hardship of their own that has allowed them to more easily step outside themselves and to truly, deeply understand what it is to fulfill others needs; to be selfless enough to give without expecting something in return. Some call these philanthropists heroes. Some might call them saints. I call them exemplary, kind, noble.

In my campaign to promote awareness of epilepsy’s prevalence and scourge—and in turn to raise funds for research into a cure—I’ve been deeply moved by the charity of some. A woman I barely know, perhaps not at all except for her name and the fading memory of her beautiful teenage face, made a generous donation to the cause. In turn, a friend of hers kicked in the same amount. An acquaintance, who hasn’t displayed the slightest awareness that we even have a child—much less one who is very ill—gave a hundred dollars. Old friends, new friends, scores of compassionate folks living in our community have donated. People who’ve never met Calvin—who’ve never laid an eye on us—have given liberally. All have donated to help free our boy from the lash of seizures and the crush of drugs that continue to haunt his days and nights, and we are deeply grateful.

Yes, I think the Buddhist monk Thich Nhat Hanh is right; compassion is a verb. If you can't think of a reason not to give during this brief campaign to raise funds for epilepsy research and celebrating Calvin's eighth spin around the sun (which is a no small accomplishment) then, can I humbly ask, will you?
http://www.calvinscure.com

friday faves - to my peeps

If you are reading this I’d say you are quite probably a remarkable individual, at least to me. Since Calvin was born I have encountered, or re-encountered, some incredible people. You know who you are; you are doctors, nurses, therapists, authors, bus drivers, teachers, dietitians, one-on-ones, counselors, baristas, mothers and fathers, grandparents, nieces, nephews, cousins, third cousins and their kin, grocers, chefs, professors, EMTs, children, artists, musicians, students and former students, producers, new friends and old friends, shop owners, case managers, radio hosts, in-laws, phlebotomists, epilepsy advocates and founders, servers, deans, presidents, flight attendants, cooks, contractors, athletes, restauranteurs, siblings, mothers, fathers, caseworkers, ed-techs, contractors, recruiters, realtors, designers, managers, interns, security, dog owners, war heroes, department coordinators, pharmacists, technicians, alumni, entrepreneurs, directors, former teachers, actors, behaviorists, farmers, bartenders, coaches, caretakers, retirees, fishermen, clergy, swimmers, writers, gardeners, motorcyclists, lawyers, neighbors and former neighbors, salespeople, curators, quilters, kin, husband, movers and shakers.

You are all an integral part of my experience raising Calvin. Some of you I may never have met or sought out if it were not for him. Like Calvin, you have enriched my life beyond imagination. You have all helped shape me into the person that I am.

It is because of your love and support that I continue to survive my grief. It is due to your friendship that I haven't been beaten down. Your good humor, sharp minds, warm hearts and encouragement have kept me going even in the face of fear and darkness. But most significantly, the fact that you listen and are genuinely concerned is what energizes and inspires me to tell my story on behalf of Calvin.

So with this, I say thanks to my peeps. Keep on keepin' on sharing Calvin's story to help bring us one step closer to a cure for epilepsy.

A version of this post was originally published in November 2010.

Calvin with his one-on-one Mary