friday faves - live another life

To see my little boy suffer relentless seizures year after year and endure heinous drug side effects—all of which make him slip further and further from his potential—while knowing that so much more can be done in search of a cure, pains me to no end. It doesn't have to be this way if more people would simply choose not to avert their eyes, but instead to get off the sidelines, as so many have done for other causes, and use their power to incite change, promote understanding and spark compassion all in hope of finding a cure for epilepsy, which kills more American’s every year than breast cancer, including our children.

I often wonder if some people stand motionless because they think they don’t know anyone who has epilepsy or are somehow embarrassed by it. But the truth is that we all know someone who hurts from epilepsy, though so many hide it, which is one reason it doesn’t get the attention that it deserves. I aim to change that, but I can’t do it alone. If everyone could just step out of their own worlds for a moment and slip into someone else's shoes who has a loved one with epilepsy—live another life for a moment—perhaps they could find empathy.

Epilepsy is a misunderstood, underestimated, grossly under-funded, stigmatized and neglected disorder. In honor of epilepsy awareness month, I invite you to step into our shoes and encourage others to do the same by sharing Calvin’s story. Help bring us one step closer to a cure. It’s as easy as pushing a button.

Originally published 11.27.11.

In honor of international epilepsy awareness please share.
Give to cure epilepsy: http://www.calvinscure.com

photo by Michael Kolster

such a good mom

I thought to myself

I’d be such a good mom to a normal kid

Like the two I babysat as a teen

How I loved them so

The girl with freckles and sparkling eyes

The towheaded boy with long lashes and dimples

I think they loved me

Those two old souls

And I had enough for them both

Even though they weren’t mine


I said to myself

I’d be such a good mom to a normal kid
 
Remembering my coaching years
 

Adoring children huddled at my feet

On the warm pool deck

One or two sitting on my knee

Gazing out over blue water and churning limbs

Others braiding my hair with little hands

What extraordinary, ordinary kids

Enough love for the lot

Even though they weren’t mine


I cried to myself

I’d be such a good mom to a normal kid

Peppering bedtime stories with silly sounds

Riding bikes down the street side by side

Wind and sun in our faces

Dancing in circles to crazy happy music

Teaching him all about this beautiful universe
 
And that he should hold fast to his dreams
 
—never let them go—

Even though they might not be mine.

photo by Michael Kolster

allie's story

Written by Becky Daniel, Allie's mom

My daughter Alexandra—Allie—now seventeen, had her first grand mal seizure when she was nine years old. We had embarked on a family trip driving up to Prince Edward Island through Maine. Allie was sitting in the back seat next to her two older sisters watching a DVD movie. Feeling drowsy, Allie nodded off. It was around 6:30 in the morning and we’d been on the road for over an hour. Suddenly, her sister Hanna, who was seated in the middle, felt Allie trembling. Allie began struggling for air and her eyes rolled back into her head. Hanna started screaming, crying and yelling Allie's name. My husband and I were jolted by the noises coming from the back seat. Immediately, he pulled off to the side of the road and ran over to open Allie's car door to see what the hell was happening to her. I was in shock, having never seen a seizure before, frightened that my daughter must be dying for some unknown reason that I couldn't imagine. We laid her out on the ground watching her arms and feet flail. She appeared to be choking on her tongue and she was drooling. Her eyes were blinking over and over and rolling back into her head. Crying and scared, I was holding her and talking to her, trying to let her know that I was there, that it was going to be fine, though not really understanding what was happening to her at all. My husband cradled her head so she wouldn't keep banging it on the ground. Hanna, still in shock, sat in the back seat crying while my oldest, courageous daughter, Aimee, grabbed the cell phone and called 911.

Thankfully, a nurse on her way to work at the Calais hospital noticed all of us huddled on the embankment. She pulled her car up behind us and offered to help. What seemed like a lifetime was really about a three to four minute seizure. We scooped Allie’s limp, lethargic body back into the car and follow the nurse to the hospital.

In the emergency room, after hooking her up to a heart monitor, giving her an IV and observing her while she woke up, they concluded that she’d had a grand mal seizure. They sent us out with a prescription for Trileptol and a recommendation to see a neurologist for continued testing in hopes of learning why this happened to our daughter.

We cancelled our vacation plans, packed our family back into the car, turned it around, and switched seats sending Aimee to the front while I cradled my exhausted, lethargic daughter in the back seat and consoled Hanna, who was still worried about her little sister.

Once home we watched Allie continue to have fifteen to thirty partial seizures a day for which she tried many, many drug combinations. She was admitted to Maine Medical Center and traveled by ambulance to Boston Children's Hospital for a long-term electroencephalogram (EEG), PET Scan, and several other tests. After almost two weeks of tests trying to answer why Allie suffered so many seizures so quickly, we got no definite answers. We came home with a drug combination that helped to control most of her seizures.

After living with this for several years Allie had another set of breakthrough seizure clusters and had to be readmitted to Boston Children's Hospital for more long term monitoring, again with no answers. Allie's doctor then asked her to try an experimental MEG test for additional answers. Again, we could not find any root cause for Allie's seizures, and this is where we find ourselves today.

Allie’s seizure's now are mostly controlled by a drug combination of Depakote, Lamictal and Vimpat, and we feel very lucky that she hasn't had a breakthrough, grand mal seizure since 2010. Although she continues to have focal seizures a few times a week, her meds seem to be working fairly well.

Please share this story in honor of international epilepsy awareness month.
Give to cure epilepsy: http://www.calivnscure.com

Lovely Allie

beauty and terror

Let everything happen to you. Beauty and terror. Just keep going. No feeling is final.
 

— Rainer Maria Rilke

photo by Michael Kolster

the wisdom i see in leaves of grass

This is what you shall do; Love the earth and sun and the animals, despise riches, give alms to every one that asks, stand up for the stupid and crazy, devote your income and labor to others, hate tyrants, argue not concerning God, have patience and indulgence toward the people, take off your hat to nothing known or unknown or to any man or number of men, go freely with powerful uneducated persons and with the young and with the mothers of families, read these leaves in the open air every season of every year of your life, re-examine all you have been told at school or church or in any book, dismiss whatever insults your own soul, and your very flesh shall be a great poem and have the richest fluency not only in its words but in the silent lines of its lips and face and between the lashes of your eyes and in every motion and joint of your body.

—Walt Whitman, from the preface of Leaves of Grass

Read the entire preface here.

photo by Michael Kolster

this little enigma of mine

Every weekend feels much like the previous one, like in that movie Groundhog Day, only things don’t seem to get better, we don’t learn what we can do differently to improve our lives or figure out this little enigma of ours that we call Calvin. For years it’s been the same old same old monotonous weekends during which the most exciting thing we do is to get lattes at the coffee shop up the road and go for a scenic drive. Calvin is nearly impossible to take anywhere without running into his stubborn refusal to walk where we want to take him.

“Let’s do something fun this weekend,” Michael says to me over scrambled eggs and toasted bagels.
“Like what?” I reply, sipping my lukewarm coffee.
“I don’t know.” He adds.
“I don’t know either,” I say, resigned, noting Calvin’s crazy behavior that makes already difficult outings even harder.

Calvin had enough energy this morning to power a rocket to the moon or, in my case, send me to hell and back. What I mean to say is that he was beyond hyper, like some three-and-a-half foot crack addict. His manic behavior has continued throughout the morning and into the afternoon, with bouts of hysterical laughing, coughing and hyperventilation followed by odd space-outs and catatonic staring at his hands.

I wonder if my son is becoming schizophrenic, wonder too if he is haunted by his behavior as much as I am. I feel a seizure coming on even though it is only day five since his last one, only 1/16th as long as he went between seizures in late summer.

He’s in his johnny-jump-up right now, spinning, laughing, screeching and cracked like a nut. He’s getting stronger, he’s getting bigger and I am beginning to wonder how I am going to manage this kid in a few more years, after a he puts on a few more pounds and few more inches. As it is right now, when he is in what I think might be distress, he yanks my hair so hard he twists my head. Sometimes he grabs my throat and I fear he’ll choke me. He clutches my head and drags his teeth hard and painful across my face, though so far I have escaped serious injury. I figure he’s just trying to tell me something—perhaps that he feels a seizure coming on—but, alas, there is nothing that I can do beyond trying to remain calm, which much of the time I find difficult to say the least. That's when Michael comes to the rescue like some superhero.

The kid is a tangled mess of nerves, a puzzle missing most of its pieces, a little brain and body awash in seizures and drugs. Calvin: my humpty dumpty kid. All I wish for is to be able to put him back together again, this little enigma of mine.

readers rock my world

If Calvin could somehow choose anyone in the world to be his mom, there is no one else on the face of this entire blue marble that would be a better nurse, a more conscientious caregiver, a more fierce and committed advocate, or simply a more profoundly loving and patient mom than the one he has tonight. And I honestly think he knows that. You should probably also know that doing what you do also helps some of the rest of us find something a little better inside ourselves. So thanks.

—Jim

My husband and I just spent the morning at my daughter's neurologist's office trying to find out why there seems to be only three states of being for my girl: having seizures, bat-shit crazy because of the meds, or a zombie because of the meds. I hate them all. I miss my pre-epilepsy daughter. And I'm sick of it. I wish you and I had other options.

—Lisa

Wish I were there to bring up inappropriate topics at the dinner table and make you laugh ... for just a minute or two. Thinking of you here in SF.

—John

Listening and holding you close at heart ... your honesty, raw emotion and COURAGE blow me away. Wishing you moments of peace and grace.

—Sel

Oh, dear. Time to stop lurking and 'fess up—I am listening too, from Zurich. I am the mom of three n/t (neurotypical) kids and here I am, fascinated, terrified, moved, by what you write. My kids see me reading and I explain to them why and what I am reading ... so we are all listening.

—Danielle

Even though you may feel alone, you are not. I get it. I understand your words. I am here for you any time, any day.
 

—Karen

I'm listening from far away and feeling. ciao

—Federica

love you dearly. I am grateful for the richness and depth you have given me.

—KIM

I had a friend who [had uncontrolled epilepsy] so I have great empathy. She "looked" normal, so she had to deal not only with the idea she was "disabled" and gave up a lot of her dreams (she'd been accepted to John Hopkins to study nursing, her lifelong dream, couldn't drive because of the nature of her disease's presentation, she couldn't hold a job) but also had to deal with people who questioned her disability (until they saw her seize.) Education helps everyone and you are one of the educators.

—Agy 

I awoke at 2 am in a terrible nightmare so I went upstairs to snuggle in Cole's bed. I still could not fall asleep so I pulled out my phone and read some of your older posts. Well, I was finally able to fall asleep and I had the sweetest dream about Calvin, in my dream he was happy and snugly and was trying to tell us that he was happy. It was so dear and I didn't want to wake up so I continued hitting the snooze button on my phone. I told the boys about my dream because they ask me regularly how Conor's friend Calvin is doing. it is very sweet. We lift you all up in prayer every single day, Cole loves to pray specifically for Calvin when he goes to bed. He couples Calvin and Conor in the same prayer, that they would both be able to walk and one day talk and just be happy with no struggles.

—Emi

Thank you to all of my readers. You give me strength and help to make my world go round.