Thursday, March 05, 2009


1 year ago today, her world was totally rocked. RRRRRRRRRR--OH---cKed.

she'll never forget:

waking up wondering why she was taking a nap on top of her clean laundry, on her husband's side of the bed, when she needed to get to lunch with a friend.

staring at herself in the mirror, touching her head with her middle finger, not understanding that she was in pain and that she was swollen.

her feeling of panic: where are my children? what day is it?

her husband responding after a disoriented phone call

k-larS coming to her aid.

not wanting to throw up everywhere in the waiting room at the hospital.

feeling startled at the repeated questions: are you pregnant? did your husband do this?

listening to her two roommates, one who was old, ailing and could not communicate with English, one who was an actor/dancer, with major spine issues, telling her story over and over and over again, so much so that she actually googled her when she got home....

family sending greetings, heather bringing her ben and jerrys, jen sending her a book, sara a care package, the cards, emails, phone calls, the genuine concern.

standing at the nurses' desk on day 3, telling them she would stand there and wait until they discharged was her baby's birthday,: I WILL BE GOING HOME NOW.

And then she went home.

her mom spent a week with their family. She helped them so much. She loved her daughter, talked to her about everything but the head bump. It helped her to be treated like she was normal, and not disabled.

she cried to sleep a lot.

she remembers Easter weekend. she had an allergic reaction to her first medication, and she didn't take meds for 2 days. That was the last time she felt FULLY herself.

Picking up her cell phone in Times Square, hearing that her MRI showed that her brain had a bleed that was healing. Having to think through that news.

Some firsts:

feeling physically sad

24-hour EEG

driving restricted

driving resumed

brain buzz

new perception of where exactly things are

explaining her condition, being met with full understanding 100% of the time






high medical bills

pill case

a break from work

feeling rage

reversing things: notes on a music staff, birthdays

holes in her thoughts

weak muscles

falling asleep if she sits too long

She wonders, is 1 year being seizure-free a celebration? She has had a handful of experiences that might pass for mini-seizures, so is she really seizure-free? Is it a major accomplishment or a small tick?

one year. and now presenting, the rest of her life.

She reflects on the cycle of the past year:

confusion-surprise-sadness-survival-pushing-fighting-struggling-breaking down-grieving-mourning-accepting-finally accepting

She feels more like the new her.

She misses:

finding words easily

She wishes that more of that would be part of the new her.

She has hope that it will return during the second year. Year 2. Seizure free? she hopes. Epilepsy free? nope.

brain cupcakes anyone?


McKay said...

mmmm, I loves me some brain cupcakes. Could there possibly be a more appropriate dessert for you today?!?! I mean, we all know how you feel about cupcakes...

Love you. You've gone to so many new places in the last year (and I don't mean physically) and you're doing great. Keep fighting the fight, right? That's how life works. ;-)

hdknowles said...

She will find those things that are missing in her life right now: finding words easily, adrenaline,
energy, laughing, fun. She's made amazing stides, she still has family and friends who love and care about her, and she's learned that life is about making adjustments. Life is a journey and we never know what turn it will take. Things will be different in her 30s. She will get through this.

Jen said...

You've come along way, baby....since that day a year ago!
I'm very proud to be your friend.

kj said...

You have been brave, strong, inspiring, patient, courageous, crazy and loving this past year. You've had to overcome fears and dealing with med reactions all while being a wife and mother. You are the heart of your family and the most special woman in their lives. You are a blessing in my life and the lives of many others. Celebrate each new day.

Chloe said...

That was a terrible day a year ago - I remember Carrie calling me and feeling paralyzed for a moment I was so worried for you. And look at how far you have come! Onward and upward - you can do it :)

kristie sessions said...

oh my Big K.... you are still that other woman in so many ways. Love to you and courage for another year.
your little k.

Zinone said...

You have had quite a year! You seem to be doing better everyday and we are so glad! May you never have another seizure... may you continue on the up and up and get back to feeling your old self soon!
Love you.

Linz said...

You've handled the effects of HB08 admirably. You continue to inspire me.