More Little Lacie

Bee Gees Song of the Day: Love Never Dies

To God above i swear
I only wanna live in the shadow you make
the soul never lies
but love never dies it goes on forever

Little Lacie of the Enormous Brain got some fabulous news. Her insurance company has approved her brain surgery at the premiere institute for her diagnosis. I'm happy. I'm scared. She's scared for herself; this is brain surgery. It's getting closer and more real than ever.

My tiny little friend is strong though. She continues to try to live a life as normal as possible amidst her symptoms; dizziness, crushing headaches, brain fogginess, sensitivity to sounds. She's pretty successful at it; and I think mostly, people tend to forget she is struggling.

We chatted today. "I have been a fighter all my life. I watched my brother die right in front of me ~ I could have fallen apart ~ but I soldiered on. I had two hip surgeries with six weeks in a body cast both times. I had to learn how to walk again ~ twice . I was told I would always walk with a limp and not be athletic, so I threw myself into sports; swim team, soccer, pep squad, ran, rappelled down mountains, climbed peaks. Now it's just brain and spinal surgery. I've always stared down challenges in my life. I don't know how to do it differently."

Lace just wants to be normal again. She "hates being so self absorbed" (can you imagine?) To combat this, she has made friends with other sufferers of Chiari. They seem to want to meet her, to flock to the light that radiates from her. She finds this astounding – because she feels like she fakes her clarity most of the time. It makes sense to me - they need her warmth, her strength and her faith.

Holding other people up is a big responsibility – she's a little thing and now she's this brain tail stuff sticking out of her cranium, but she's still holding people up. She's still working out. She's still going to her daughter's cheer competitions. She's hosting sleep overs for 18 giggly girls, she's still working full time.

But sometimes, people forget that she has needs too. She gives until she's got nothing left to give. She leaves nothing for herself. I think that during the day, the seams start to tear, in her little bag of sanity she keeps so close. The she furiously sews the bag up at night so she can get through the next day.

The reality of her surgery is shoving its face into hers. And it's scary. I don't want her to be scared, or tired, or struggling to keep it all together. I just want her to be better. So we can see the new X-Files movie together when it comes out. So we can just go out for lunch. So we can go to Tibet (we have that all planned out, she'll climb the Himalayas, I'll ride on the back of a little sherpa).

So if you are reading this, say a little prayer for Big Little Lacie. Please. And thank you.

Little Lacie of the Enormous Brain

Bee Gees Song of the Day: Alive

I ain't lost and I ain't searching.
But then you know me very well.
And I can't change the wind and make it blow the other way.
I'm a fool and I can tell .

My friend Lacie has this ginormous brain; so big, it oozes out of her skull. Lacie is this teeny four-foot-something “Tixan” (Texan for the right-speaking people of the world) and I tower over her at 5’2”. My first signal that she wasn’t quite right was within hours of meeting her eight years ago and she commented on my “Tinnis shews” (Sneakers, again for the right-speaking people).

I joke, but my friend has a condition called a chiari. Simply put, as I said, she has a bit o’brain sticking out from the bottom of her skull. She made me aware of it almost as soon as she was diagnosed. I’ve seen pictures and she has allowed me inside her year-long struggle with the progression of her condition, the fights with her insurance company, and the requirements that she get second, third and fourth opinions from hot-winded upstate New York neurosurgeons who think their name is spelled g-o-d. Jerks.

She’s facing brain surgery, if the scum-sucking bottom-dwelling pieces of sh*t at her insurance company will approve it already. Eff-sticks. Give me a phone, and get me the address to the New York State Attorney General, the Albany Times Union, and the NYS Insurance Department. A strongly worded letter will be sent to the Insurance Company Eff Sticks (and I work in the industry, can you imagine??) with cc’s to everyone that matters.

Lace won’t let me.

Interesting the individuals we meet on our path. Eight years ago, after cruelly mocking her twang and posting a vocabulary lesson outside my cube, we found out we both had an inordinate affection for the X-Files and soon discovered that we were kindred souls. Lace came to my house and saw dead people, I went to hers and hung out. (Dead people apparently shun me, though my house was teeming with them, they chose not to reveal themselves to me.)

When I went through one of the most difficult periods of my life ~ my separation and subsequent divorce ~ I tried, but was unsuccessful at keeping my anguish in. I didn’t say a whole lot in the office, and without a word, every few days or so, a beautiful biblical passage would wind up on my desk before I got in the office in the morning. Lacie knew I was in pain, wasn’t going to intrude, but she was there with her unspoken support. It was invaluable. In her uniquely beautiful and creative way, she made me collages, printed out pictures of Duchovny, made cards; anything to make me smile and let me know she loved me.

I live 400 miles away now, but it doesn’t stop us. We chat nearly every day. I rejoice with her on her good days and pray for her on her bad days. I’ve taken her to task for running/jogging/walking when her doctors have told her to cease and desist, but I encourage her freedom of spirit at the same time. She knows my most obsessive secrets and she delights in them. She’ll tell me I’m weird, but she makes it sound like a good thing.

She has even taken my dvds of “Emperor of the Sea” with Song Il Guk and hopes to watch it some day. That’s my definition of friend, right there.

More importantly, as she faces an enemy that would make me want to shrink inside myself (not the insurance company, but you can insert that here if you like, the stinking *&^% $#@!+* pond scum), she meets it head on with a strength, courage and profession of faith that astounds me. She stumbles, but gets back up. She sees hope in all things and rejoices. She feels comforted and strengthened in her weakness.

I am humbled by her in every way. I just wish I could do more.