Thursday, February 19, 2009

The Holiest Place on Earth

First I wish to apologize if I haven’t returned a phone call or email from you. Talking too much tires me and typing is tough. What can I say? It sucks to be popular. Please don’t give up on me though – I love hearing from you. Today I couldn’t do that mouth-pursing thing you do when you apply lipstick. The top left half of my lip wouldn’t do what I told it to do – I felt like Meg Ryan after the botched collagen job.

I feel lucky to find these things curious rather than tragic…mostly.

Ronald is settling in to our home. If I leave her alone and go to another room she yells “Hi” in a really loud voice then she tries to get me to count to 4 with her and when that doesn’t work she says “Fuck you” over and over again, punctuated by the occasional maniacal laugh. I love this damn bird!

Over the weekend, Mac, Jamie and I flew to Orlando to go to The Holyland Experience - a Christian Theme Park. The park boasts a “He is Risen” topiary, a gift shop with Bible highlighter pens and 7 dollar crowns of thorns ( a bitch to take in your carry-on –they’re pointy!), the kid’s “fun zone” where you get to be swallowed by a whale with Jonah and a number of sea creatures who speak ebonics for some reason (don’chu be listenin’ to that starfish now Jonah, mercy me it sho is dark in this here whale belly!) and of course the main event – regularly scheduled crucifixions.

Jesus is whipped and beaten with great vigor, regularity and yes, punctuality and in such a realistic way, Mel Gibson would be proud, though Mel might object to the lovely young black woman with the amazing voice who sang like Beyonce into a headset mic as Jesus got his ass handed to him. Mel would have at least had her sing in Aramaic. People wept as they watched Jesus stagger through the streets of….Orlando and their children hid their heads in horror as the Romans whipped Jesus and the red-tinted corn-syrup blood (please let it be corn syrup blood) sprayed off of his lash-torn back. Side note: Jesus had a full and hairy beard and no body hair at all. Jesus waxes!

I brought him (aka Him) a Valentine, which I hoped to give to him personally but they keep him under wraps. The man has suffered enough, I suppose. I had wanted to secure my place in fundamentalist hell by luring him with a valentine, getting him to hug the cripple then slipping him the tongue. It would have been my magnum opus. Instead I ended up trying to con a nice shepherd girl into getting me to him.

Let the record show I didn’t lie.

I told her we traveled across the country to see the Holyland. True.

I told her I really wanted Jesus to get my valentine bear and chocolates. True.

I told her I had ALS and that it was progressing quickly and I would die probably in the next couple of years. True.

Something happens to these events when you put too much of your real self in them. They get real. If you’ve seen the plays I write you know my pattern – get ‘em laughing so they’re off kilter then sucker punch the audience with a true moment. This time I did it to myself.

The shepherd girl embraced me, crying. She said “Bless you, you’ll soon be with our Lord.”

And much to my surprise, I cried.

I thought I was crying from guilt at attempting to manipulate this sincere woman.

Then I thought I was crying because “soon be with our Lord” is a euphemism for dead and that’s a tough one to hear out loud.

Then I realized that I cried because this devout fundamentalist and this foul-mouthed, satirical Berkeley-ite had reached across a vast divide and found a plane where both of our truths could momentarily fuse.

I cried because compassion can flow from the unlikeliest sources.

I cried because in the midst of plastic Jerusalem artichokes, canned religious musak, and “take your picture with Jesus” displays, I was forced to look at the layers of complexity at play, forced to put on the 3D glasses and see real people.

Ironic, huh?

I didn’t see Jesus, I just wanted to leave at that point.

We arrived at our cab 15 minutes late but the driver – half Greek Orthodox, half African Muslim, all agnostic said “ I told my dispatcher I will not keep the meter running. These are good people.”

Mac had told Jamie that every cab driver would tell me their life story and every crusty old man would go out of his way for me. No one proved him a liar. I was especially moved by the Moroccan Disney Shuttle driver, who was recruited by Disney to move from Morocco to Orlando to play his flute in a live show several times a day. Back in Morocco he had made his living by playing the traditional music of his region. Then they cut the Morocco show and switched him to van driver. The world is simply swollen with broken dreams.

Disneyworld (aka The Crappiest Place on Earth) was underwhelming. Wheelchairs go to the front of the line there but every line held a fucking fleet of them. The disabled Olympics don’t have that many wheelchairs. I felt like I was at murder ball tryouts. The sick part was that most of the wheelchair people could blithely spring from their chairs and dash to the ride to get the best car while Mac would grab me under the arms and Jamie would grab my legs and they’d sort of pour me into the ride. We did the rather disappointing Pirates of the Caribbean ride, It’s a Small World ( who needs hallucinogens when you have this ride) and the teacups (weeee!) That took the entire day.

The best part of the trip, however was hanging with Mac and Jamie. We had a great chemistry together and Jamie was nothing short of perfect as a helper. If you could only have seen the two of them hauling me in and out of cabs from the wheelchair, administering the seated Heimlich/assisted cough like old pros and causing me to laugh myself into choking fits. I had at least half a dozen pseudo bulbar episodes (uncontrollable and out of context laughing or crying fits) all of which were laughing episodes and they just laughed along.

Jamie lost her mom when she was barely pre-school age and she remembers asking her if she was going to die, just like Mac asked me before my diagnosis. It broke my heart to think of this sweet little girl asking such a grown up question. Like my boy, she has had to grow up fast and though it isn’t fair, they’ve both grown up pretty damn special. If she were my daughter I’d be mighty proud.

SO there I was on a funny trip that turned poignant with two cynical kids who really aren’t cynics at all. Why do we ever expect things to be like we planned?

I have more stories than I have strength to tell. Sometimes I wonder how I will get them all down. I won’t live on but dammit, I want the stories to be immortal – the sad ones, the funny ones and the ones I haven’t figured out yet.

And the ones I haven’t lived yet.

I leave you not with a story but with the image of a beautiful girl with kooky attire and an unsightly hoop through both nostrils wedged into an airport bathroom, hugging her crippled former teacher who is crying because wise and beautiful boys and girls shouldn’t have to grow up so fast.

Ironic, huh?


Anonymous said...

Even without ALS...the sheer size of your wonderful writings would tired (sp?) anyone else out...except someone on speed...hmmm!?!?

Anonymous said...


Do you realize how many strangers you draw love from? It truly amazes me what feelings of care and love you draw from my soul.

Thanks for being there, thanks for being the person and spirit you are. You craft stories of love, fun, adventure, tragedy that are timeless and touch all that read them.

love from another of your fans

Anonymous said...

rock on
tireless one
rock through
the beat and the drum
rock free
and you will forever see
the true meaning of
we, the people
who are there for you

Anonymous said...

beautiful. perfect.

Anonymous said...

I have never heard about the Holyland Experience Christian Theme Park. It sounds interesting. I am going to look into that.

Anonymous said...

Carla,it is so good to read your words. ALS sucks and being aware of what lies ahead of you sucks even more. Your words are beautiful...

your faithful museling,

Anonymous said...

You are an amazing writer my dear. And an even more amazing human being. Love, Joanna

Anonymous said...

I have been reading your blog for the past year - ever since my dear friend Moira (close friends since college) told me about your ALS and about your blog. I have known you for years though Moira's stories, but we never met. I wanted to comment many times but, despite my age, I have three young children (a 7 year old and 2 and half year old twins) and work full-time and most nights literally fall into bed. Thus, this is my first response. Enough introduction ... You are a beautiful writer. You capture so much of life's texture with words. You have given all of us such a gift; a reminder of what is important, funny and beautiful in this world. Thank you for that. I hope we get the chance to meet some day. (I live in London, so I missed the opportunity when you were here.) I do wish you peace and strength on this unique journey that you are on. Much love to you. Katy

Anonymous said...

Hi Sweet Girl,

What a gift you give to your Muselings. Your free-flowing thoughts about life and love, your insight into what Mac must be experiencing and the love you bring to all who read you. You truly are a gift from God, whomever your God might be. You inspire.

Love, Pat