10.23.2014

may the light of your soul guide you

May the light of your soul guide you.
May the light of your soul bless the work you do with the secret love and warmth of your heart.
May you see in what you do the beauty of your own soul.
May the sacredness of your work bring healing, light and renewal to those who work with you and to those who see and receive your work.
May your work never weary you.
May it release within you wellsprings of refreshment, inspiration and excitement.
May you be present in what you do.
May you never become lost in the bland absences.
May the day never burden.
May dawn find you awake and alert, approaching your new day with dreams, possibilities and promises.
May evening find you gracious and fulfilled.
May you go into the night blessed, sheltered and protected.
May your soul calm, console and renew you.
 
~John O'Donohue

This poem was sent to me by a friend, a beautiful woman named Oceanna, whom I have yet to meet but who seems to know me.

photo by Michael Kolster

10.20.2014

so long benzos, hello cannabis

For years my gut has told me what my mind now sees as a truth: my ten-year-old son Calvin has, for years, been suffering a paradoxical reaction to at least one of his antiepileptic pharmaceuticals.

My kid was only three years old when his (now former) neurologist prescribed his first benzodiazepine, clonazepam, brand name Klonopin. It was meant as a bridge drug, to be used only for a couple of weeks while he titrated to therapeutic levels of two other anticonvulsants, one of which, if increased too quickly, can cause a life-threatening rash. Instead, Calvin remained on Klonopin for over three years and the only way he came off of it without suffering debilitating withdrawal symptoms, including scores of extra seizures, was to transition to a benzodiazepine derivative, clobazam, brand name Onfi, which he has been taking for over four years.

While on extremely high doses of three anticonvulsants, Onfi, Banzel and Keppra, Calvin’s behavior was often off the wall. Everything was difficult: sleep, changing his diaper, feeding him, walking him around, soothing him, even driving in the car. When he became anorexic, his behavior barely tolerable, I started weaning him from the Banzel and began investigating medical marijuana. After a year of research and persuading his neurologist to sign a letter of recommendation for the treatment (his pediatrician was already on board) I was finally ready to give Calvin a homemade THCa cannabis oil. And though Calvin’s appetite had improved after stopping the Banzel, his hyperactive, irritable, manic behavior remained off the charts. I knew in my gut that at least half of his problem was the benzodiazepine, which, though it is a sedative, can cause insomnia, restlessness, headaches, dizziness, irritability and mood swings. So, shortly after I began giving Calvin the cannabis oil—which seemed to spawn immediate improvements in his sleep patterns, focus and mood—I began weaning him from the Onfi.

Six-and-a-half months later Calvin is taking less than half the amount of Onfi he was taking last April, and it shows.                                  
_________________

It had been a while since I’d taken Calvin to the grocery store by myself. We entered, grabbed a cart and he began to push. He didn’t try to bite the handle. He pushed the cart all by himself for a spell. He stood holding onto the cheese case while I walked a few feet away and grabbed some pesto. While I tackled a thirty-pound bag of dog food he stood holding the shelf for a while, then began walking down the aisle all by himself. I wasn’t too fearful as he stepped beyond my grasp because it has been weeks, if not months, since I’ve seen him trip or fall off balance.

By the time we got to the checkout line Calvin was a little impatient. The cashier, one of the few I don’t know, leaned over to me.

“Next time, if you need, there are some special carts you can put him in,” he said kindly.
“Oh, thank you,” I replied, “but I like to make him do as much as he can by himself.”

“Well, it’s there if you need it,” he added with a smile, and I thanked him again.

The other day the nurse’s supervisor came for his biannual visit.

“It’s like I’m seeing a different kid,” he said, remarking on Calvin’s growth, his good posture, improved balance and his calm nature.

A few days later Calvin's teacher drove by just after he had gotten off of the bus. I waved her into the driveway and she jumped out for a hug and a short visit.

“Thank you for what you are doing for my boy,” she said, and I thought I noticed a slight tremble in her voice.
“I used to dread changing his diaper,” she went on, “and now I don’t.”

We both marveled at how much calmer Calvin is on the changing table and how much his balance has improved. She told me how well he focuses on songs, sits still in class and is quieter.

“It’s the benzo,” I said, referring to the relative lack of it in Calvin’s bloodstream, and I lamented that it is going to take another six to nine months to get him entirely off of it safely and without causing him too much suffering from withdrawal. And it's the cannabis, I realize, that is allowing us to wean the benzo.

We gave each other another hug and Calvin walked up the steps with a smile on his face because I’d praised him for doing such a good job.

Though it is going to be a long goodbye—which I loathe—so long benzos, hello cannabis!

Calvin in 2010 after having weaned completely off of Klonopin and having just begun a tiny dose of Onfi. Notice he is not wearing a kerchief around his neck, because benzodiazepines cause excessive drooling.

10.17.2014

fourth graders

Years ago when Michael and I first met in San Francisco, besides taking thousands of photographs, putting them into collage or varnishing them under a layer of wax, he had begun dabbling in paint. For hours he'd sit at a table in the center of his Mission District living room and put brush to canvas. One of my favorite was a series of three flash cards which he displayed together on one wall. Now, one of them hangs in our home and Calvin loves to bang on it with his drooly fingers. I think he likes the contrast of the large black shapes (he doesn't know they are numbers) against the white background.

Last week I visited Calvin’s fourth grade class. It’s a class he doesn’t spend any time with beyond recess, because the focus is on curriculum such as reading, writing and arithmetic, none of which Calvin has the capacity to learn. Entering the class, I wondered if the children still use flashcards to practice their multiplication. I'm fairly certain they don't.

I went to talk to the kids about Calvin, explain his disabilities, discuss epilepsy and answer their questions, which were many and varied:

can calvin talk? when do people get epilepsy? why doesn’t he spend time in this class? what is his favorite thing to do? if he gets to come off of the drugs, will his vision improve? can Calvin brush his teeth?

When I mentioned disability, one boy piped up and bravely shared with his classmates for the first time that he has autism. When another boy asked if Calvin rode the bus, I told him yes and explained that he could get up its steps all by himself, to which a girl across the room exclaimed, “That’s so cool!” She went on to say how great it was that disabled people can learn to do things.

I told the group that Calvin once said, “mama,” when he was eighteen months old, right before the seizures and the drugs began, but that he hasn't said it since. I mentioned that Calvin knows one sign using sign language, and I asked them to guess which one.

“Mama?” one girl asked.
“More?” another piped.
"To ask to go to the bathroom?" said one boy, and I decided not to mention that Calvin still wears diapers.
“No?” the teacher guessed.

Finally, I told them that Calvin’s one sign is for the word hug, and several of the children cooed, “Oh, that’s so cute!”

I told the students that not all people with epilepsy appear or act like Calvin, told them that they might not know if someone had epilepsy unless they saw them having a seizure. I explained that many people with epilepsy are afraid to tell others that they have it.

"Do you know why some people hide it?" I asked.
"Because they might get teased," one girl answered.
"That's right," I replied, "because they might get bullied."

I made sure, as I always do at these class visits, to tell the kids that Calvin doesn’t have a mean bone in his body and that he always tries to do the right thing. I tell them that Calvin is the best person I know. This time when I said it, though I felt the urge, I managed to hold back the tears. I went on to encourage the children to be kind to others who might look or seem different than them, like people who may wear glasses or have uncommon hair or who use a wheelchair or who might behave differently.

"Inside," I said, "we all have the same heart," and I thought of the Palestinians and the Israelis. Then I thought of the Blacks and other minorities in this country who are often vilified, demonized, harassed and killed, and I hoped my message would get through so these children won't grow up to be haters.

At the end, when students were readying to go home, a boy nicknamed TJ approached and asked me if I would give Calvin something.

“It’s a Pokémon card,” he said.

I asked TJ to sign his name on the back and thanked him for his thoughtfulness. He took care to write in neat letters. Then he gave it to me and smiled, and I knew Calvin would have one more friend, knew the world would have at least one more person to help make it a better place.

Michael's flash card hangs on walls with three photographs he's taken of Calvin

10.15.2014

tonic-clonic

Below is a video taken several years ago of Calvin having a tonic-clonic seizure. This one is similar to the seizure that Calvin had early Monday morning. It is hard to watch, but essential in inspiring understanding and compassion for people who have epilepsy. Epilepsy is a terribly misunderstood and grossly underfunded disorder which affects sixty-five million people world wide, many of them children. One in twenty-six Americans will be diagnosed with the disorder at some point in their lifetime. Every year, as many as fifty thousand Americans will die from epilepsy and related causes such as drowning.

This seizure's intensity was likely exacerbated by benzodiazepine withdrawal, a class of drug that Calvin has been on for several years. This is why I have become such a light sleeper. This is why I constantly search for new treatments. This is why I give my son cannabis oil which I make myself. This is why I write Calvin's Story, because Calvin's suffering is so senseless and, most regrettably, he can't speak for himself.

To donate to CURE epilepsy, click here.

If you cannot view the video below, watch in on You Tube here.

10.13.2014

too good to be true again

When my boy walked hand in hand with me all the way to the fields, then traipsed around on the turf all by himself, then marched home straight as an arrow, I asked myself, is this too good to be true?

Yesterday Calvin had an outstanding day. He was smiley, affectionate and calm. He ate well and walked further and better than he has in his entire life. I thought I was beginning to get a glimpse of what life might be like once he is completely off of the benzodiazepine that we’ve been weaning for over six months, though we’re only half way there.

Last night, Michael and I sat down in front of the fire with savory bowls of Scotch broth as we listened to The Moth Radio Hour on NPR. I had the baby monitor perched on my shoulder because something just didn’t sit right with how Calvin’s day had been and I wanted to hear every sound. Besides, it had been ten days since his last seizure, a recent average, so in my mind he was due. Between bites of salad, I heard a little peep, like from a cricket or a mouse, and I ran upstairs, tripping over my pointy boots and falling on the top step. Once in Calvin’s room, I peered into his bed to see his eyes wide open and vacant. He was having a seizure.

The seizure was flat, in that he didn’t convulse, shriek or gasp. I think it was a complex partial seizure, the kind he used to have several of in any given day that often culminated into grand mal seizures that would last over twenty minutes landing us in the hospital.

I had just given him his cannabis oil an hour earlier at bedtime, so I hesitated giving him more. Instead, I climbed into bed with him and when I woke just before midnight I went downstairs, loaded a syringe with a dose of the oil, brought it with me into bed, tucked it into the side of my sleeping boy’s cheek and squirted it into his mouth. At four o’clock he woke, but thankfully not to a seizure, and after thirty minutes of fussing and flailing, a diaper change and an ibuprofen, he went back to sleep in my arms.

Nearly dead to the world two hours later, I awoke feeling Calvin’s body cramp and stiffen around mine. I called to Michael that he was having another seizure. Calvin’s legs and arms were bent and drawn up the way I’ve seen in photos of corpses with rigor mortis. His entire body was convulsing, somewhat violently, the way he used to years ago before he began taking Keppra. While he spasmed I stroked his body and kissed his neck, felt my worried brow draw up into stitches. After the convulsions subsided I gave Calvin his clobazam early. He swallowed it and went back to sleep, then woke up crying thirty minutes later so we gave him an acetaminophen suppository.

I lament that I worry not only when Calvin is sick or whiny, manic or not drinking or when his balance is off, but also when Calvin is giggling just a little too much, when he is unusually calm, when he walks without balking as if he could walk for miles. I worry because this epilepsy thing just doesn’t let up, doesn't give us any slack. For better or for worse, I’m tuned into that, can almost feel it in my bones when something isn’t quite right, when a seizure is on the horizon. Sometimes I can even smell it on his breath and it sickens me.

Calvin is asleep again now. I’ll be listening with my bionic ears and watching him like a hawk today. Two seizures can easily mean there will be a third. I hear him rustling now. Off I go.

photo by Michael Kolster

10.09.2014

calamity of nature

Don’t tell me that the Lord works in mysterious ways.

I lick ice cream and cookie crumbs off the ends of each birthday candle, wash them and carefully put them back into their box for future use (for Calvin?) and as I do I think of the eleven-month-old baby boy whose death his parents are grieving and whose life and first birthday they’ll soon be celebrating, though without him in their arms.

Late last month the child, whose parents and grandparents live in our community and are friends of friends, choked on a pebble and died. Since first hearing of the tragedy I cannot get the boy and his parents out of my mind, and I bristle at the thought of well-wishers telling them that everything happens for a reason or that God doesn’t give you more than you can handle. I hope that his parents can survive, because part of them has died.

At the boy’s funeral, the reverend said that loved ones might never regard a pebble in the same way again. I cannot imagine them regarding anything in the same way because since Calvin's birth and subsequent diangoses most everything—people, places, things—has taken on a different significance for me.

Life is a crapshoot.

The reverend also urged friends and family to embrace the fact that the child had lived a full life, rather than simply seeing a life cut short. When a friend who had attended the funeral relays this message to me, my skin prickles with what feels like tiny icicles. I think of my son Calvin whose risk of death, because of his epilepsy, is three times that of most other people, his risk of accidental death twenty-four times greater. Despite knowing this I try, though I often fail, to keep fear at bay and focus on his quality of life—our quality of life—rather than his quantity of years.

The earth has music for those who listen.

When Michael holds Calvin on his lap and kisses him into a fit of giggles, I take a deep, satisfying breath as a smile creeps across my face. I feel grateful for my growing boy, grateful for my little family, grateful for my friends who tell me that they thought of me and of Calvin in the wake of the baby boy’s death. I am reminded that bad things happen to good people—for no reason—but the upside is that, over time, some of us can find purpose and goodness. We can choose to see the richness and fullness in our lives which are shaken by the uncontrollable calamity of nature. I hope that, one day, the same can be true for the mourning parents of the little boy who died.

photo by Michael Kolster

10.06.2014

disappearing

Sometimes I just want to disappear—disappear from chopping breakfast sausage, spinach leaves, chicken thighs and almond butter and jelly sandwiches into bite-sized pieces. Disappear from dicing strawberries and mangos, slicing and separating clementines and cutting grapes in half, from splitting pills for lunch and dinner, from syringing meds and mixing yogurt and making cannabis oil and from spoon feeding my ten-year-old boy at nearly every meal.

I want to disappear from the sleepless nights, from Calvin's whining and screeching and hyper-coughing, from his endless dirty diapers, constant drool, sopping bibs and grinding teeth—and from the seizures.

If I were to disappear I don’t know exactly where I’d go. Likely somewhere sunny with miles of beach and tropical drinks, dark bodies, decent waves, black skies, warm winds. Or, I’d go to a place packed tight with tall buildings, bustling streets, sidewalk cafes, museums galore, street vendors, live music, huge parks and passersby speaking familiar and unfamiliar words.

I’d disappear with Michael but without Calvin, who’d drag me down if it were even possible to bring him along.

I’d disappear to San Francisco or New York or Paris or Rome or Bali or Rio de Janeiro or Tokyo or Morocco or Mexico or Yosemite or Big Sur or Quebec City or Greece or The Cinque Terre or the French Riviera or Lisbon, most of which I’ve been to, others not. I’d sleep in, climb exotic trees, scuba dive, windsurf, hike, ride a Ferris wheel, take in a show or two, dance to some neighborhood Forró, ride a train, climb a mountain, sail an ocean, raft down a river and very simply get lost. I’d soak up art and music, theater and dance, drink wine at lunch, read an entire book, eat things I’ve never tasted before and have numerous animated conversations with people whose language I don’t understand. I’d sleep soundly in a comfortable room without a hissing baby monitor at my head and maybe wake up after sunrise to breakfast in bed or take it in by the side of the sea.

I’d do all these thing, but I’d come back to my Calvin who is alive and doing pretty well considering the circumstances, the drugs, the seizures, the fact that he can’t walk by himself or talk at all or use the toilet. I’d come back to his immense desire for hugs, his giggles and his dimpled smile when I kiss him behind the ear.

I’ve very recently, and long ago, heard too many stories of other parents who aren’t so lucky, whose babies have died, and I imagine these parents might also feel the urge to disappear. And although some of them I don’t know, I want to hold these doting parents in my thoughts—even in my arms—and take them, if only for a moment, to a better place, a place of their choosing that might be far away or, perhaps, very near.

Salvador da Bahia, Brazil