Wednesday, December 23, 2009

In case you're not on my email list...

Dear Friends,

Well, it’s mid-December, and so it’s time for my third annual Holiday Letter. As I write this, I’m laying in bed. My trusty assistant, Louel, is typing for me. In the last year, there have been so many losses. I now do pretty much nothing for myself. Caregivers spoon-feed me, help me on the toilet, get me in and out of bed, dress me, and take care of all manner of Carla-maintenance. Some of these things are more difficult than others to handle, but you would be surprised at which ones are the hardest. Believe it or not, maybe the worst thing of all is not being able to pick my own nose. C’mon, you all do it. You just don’t let anyone see you do it. Or at least that’s what you think. When you’re stopped at an intersection, do you really think that your windshield and side windows are suddenly tinted? I see you with your index finger deep into your nostril up to your middle knuckle digging away. My problem is I can never be alone to do that. And can’t lift my hand high enough to get my finger into my nose. I think this is worse than not being able to walk. Scratch that. I know it is. And speaking of scratching, it sucks not to be able to scratch an itch.

So, here I am, in a wheelchair, unable to do anything other than talk (with a short of breath slur that makes people ask me to repeat myself a lot), think (which I do so well I can’t get to sleep), listen (which I love except when listening to somebody stupid enough to be stupid but not stupid enough to mock), and love (a renewable resource that grows exponentially as my ability to do everything else diminishes). I’m in hospice now and it’s pretty likely that I’m writing my last Holiday Letter. I don’t mean to get morbid, so I’m going to phrase the rest of this letter in groupings of fun facts.

Fun fact:

Losing things is important. All the major religions understand this. The Catholics have Lent, the Jews have Yom Kippur, and the Muslims have Ramadan. Voluntarily losing things or giving things up is a gift you give to yourself. Think about all of the things in your life that serve as some kind of itchy fiberglass insulation between you and your happiness. Imagine setting those things free, depriving them of their importance. Then imagine how liberating it is to be free of that dependence: just like how sweet it is to taste food after your lips have denied it.

I lose things all the time and it has made me a stronger, better, happier person. But none of these things were my choice. Religious ritual demands a conscious sacrifice, not one based on fickle fate. So I have decided to give up something that defines me. It has been the source of my confidence and my self-esteem. It has been the thing, more than all other things, that has distinguished me from the pack. I am giving up my hair, which I will donate to somebody who needs it. It’s the first voluntary sacrifice I have made since I got sick. The other night, I watched “My Sister’s Keeper,” a mediocre film with a central theme, which, while not fully explored or exploited, was worthy of a Greek drama. At a certain point in the film, the young girl who has suffered her whole life from leukemia says, “Just once, I want to look pretty.” And so her mother buys a beautiful red wig, the thickness, color, and curl of which is like my own hair (which, by some miracle, has not yet gone gray). It made me cry. And at that moment, I knew that I had to give somebody my hair.

We need to lose things to know what we have. And I have a strong feeling that when I am a short-haired person, I will be just as strong and just as loved as I was before. Plus, I get the joy of knowing that someone will have gorgeous red hair because of me. Plus, it will be much easier to puke.

Fun fact:

As I get closer to death, I believe that religion is everything and nothing at the same time. Religion has helped people I know kick addiction. It has gotten them through dark days and unbearable losses. It has helped them create some kind of container for the unanswerable questions that whirl around a taunting universe. Religion is also nothing because it doesn’t matter which one you choose. It’s kind of like going to Starbucks. No matter which one you go to, your non-fat mocha machiatto half-caf, half-decaf with extra whip will taste the same. “Oh really?” you ask. “What if it’s at a gas station on I-5 South?” Haha! Trick question. I happen to know that there are no Starbucks between here and Los Angeles along I-5 so my broad generalization about religion stands. In your face, lifers! (That’s what I call you healthy people…) Anyway, back to religion. It is absolutely irrelevant whether you pray to the East, don’t eat shellfish, or hide festively colored eggs in tall grass. Religion and death are both everything and nothing. If I die and discover that Oral Roberts was right all along, then I believe I will still go to Heaven because I’ve done no real harm on this planet and I’ve done a lot of good. If I’m kept out on a technicality, then heaven sucks because hanging out with Oral Roberts would be the ultimate buzz kill. There’s a wonderful quote from Arthur Miller’s play, “The Crucible,” when Elizabeth Proctor is asked if she believes in witches and she says, “I say, if I can live in this world and do only good and be named for a witch, then I say there are no witches in the world.”

Now let’s say the Buddhists are right and my lack of enlightenment causes me to be reincarnated as an ant, which concerns a couple of my loved ones. I’m pretty sure that if I’m an ant carrying a breadcrumb up a hill in a line with several of my ant colleagues, I will not be muttering under my breath, “Fuck. I’m a fucking ant.” That’s the Buddhist loophole. You have no memory of your old life, so who gives a shit? If the Buddhists wanted to encourage better behavior, they would have made us remember past lives so we could alter our behavior accordingly. That’s what you get for forming a religion before the creation of any of the Back to the Future films. Doc Brown and Michael J. Fox seem to understand a hell of a lot more about inter-dimensional behavioral consequences than Buddhists. (And no, I’m not talking about Michael J. Fox’s Parkinson’s. He, like me, is randomly lucky enough to be born Canadian and also like me randomly unlucky with the whole slow-debilitating-miserable-fatal-illness thing.)

Finally, if the Existentialists are right, and the after life is a vast, unremitting void—a black hole if you will—a place that is, by definition, the absence of awareness, then I’m not really going to give a shit, am I? Conclusion: People take death way too seriously. It’s really the transition that’s awkward.

So there are two things already that I don’t fear: Loss and Death. I told you this was going to be fun.

That doesn’t mean that there isn’t a tremendous amount I regret saying goodbye to. Numbers one through one hundred are of course Maclen, Maclen, Maclen. I heard my dear Dad talking to someone about the unnatural order of a child dying before a parent, but what about the unnatural order of a parent dying before their child has grown to be a man or a woman? I’m lucky because Mac is a man and if you read his recent blog post to me you know that he is also a wise man.

Not so fun fact:

I will miss so many events in his life that would have been major memories for me. I learned something, however, by reading his blog post (http://carlamuses.blogspot.com/2009/12/maclen-muses-happy-birthday-mom.html) as well as your blog comments about memories. I realize now that a lot of big events and a lot of major rites of passage happen invisibly. We don’t even know they are happening. A walk along the Embarcadero, a blown out bicycle tire, a knock on the door from an unexpected visitor. These moments are the major events when we open our minds and hearts.

Fun Fact:

When I was younger, I used to think that people who said “I love you” all the time were somehow disingenuous. I thought those words and those feelings were like the good china, meant to stay in the cupboard collecting dust waiting for special occasions. Now, I say “I love you” all the time and I mean it. I never did get good china, but if I had it I would use it at every meal. I remember my friend Moira’s dad testing the mighty Corelle Living Ware against the wall, which later inspired me to throw all of our Corelle plates against a wall with great passion and fervor. OK, so I was drunk at the time, but it was still this momentous thing like throwing the vodka glass into the fireplace or stepping on the wine glasses as the crowd shouts “Mazel Tov!” That’s the way we should tell each other “I love you” because all clich├ęs apply here. Our lives are as frail as the finest china but they need to be lived as though they are as durable as Corelle. (This blog is brought to you by the makers of Corelle.)

Fun fact:

The afterlife is only a concept. The things we value are only things. I look at my world and I look back at my life and it’s not the shows or the CDs or the degrees or even the fabulous shoes that matter. It’s you. And You. And You. And all of the people who have been my teachers, my friends, my accomplices and my family. My friend Kim has often compared me to George Bailey, from “It’s a Wonderful Life,” saying I was the richest girl in town. And isn’t that line why we watch that show year after year. Isn’t that why we wonder at the way we get choked up in the same spot as the crowded living room of friends and family sing Auld Lang Syne? Arundati Roy says that "the secret of the Great Stories is that they have no secrets. The Great Stories are the ones you have heard and want to hear again. The ones you can enter anywhere and inhabit comfortably. They don't deceive you with thrills and trick endings. They don't surprise you with the unforeseen. They are as familiar as the house you live in. Or the smell of your lover's skin. You know how they end yet you listen as though you don't. In the way that you know that one day you will die, you live as though you won't. In the Great Stories you know who lives, who dies, who finds love, who doesn't. And yet you want to know again. That is their mystery and their magic. ..."

We watch Peter Pan because there is a part of us that mourns growing up as we would the death of something pure and we clap louder than our kids when Peter asks “Do you believe in fairies?” There is a part of us that hopes every time that Romeo finds his true love dead, she will suddenly awaken and say “Don’t take that poison you dumb shit, didn’t you read the fucking letter?” You and Maclen have been my great story and until I stop breathing, I will marvel at the good fortune I have had to know so many amazing people and to have given birth to the most amazing guy I have ever met who is not just my son but my friend.

From now on, I will tell the story of how the worst shit storm rained down upon me and how the shit transformed into chocolates and butterflies, great friends and caregivers. I will tell the story weaving in the other great stories. I will tell the story that keeps being told again and again since Lou Gehrig referred to himself as the luckiest man alive of how a very bad thing couldn’t touch a very good life. Ha ha ALS, you suck, I win!

So in the words of Romeo, “Eyes look your last, arms your last embrace” and to paraphrase Frank Capra’s ZuZu, “Do you hear that bell? Teacher says that every time a bell rings, an angel is getting laid in heaven” and I leave you with my favorite line from Peter Pan:

“To die would be an awfully big adventure.”

Thank you all for being so good to me and Mac and happy whatever-the-fuck you celebrate.

Love Carla Bailey-Pan

Ps: Buy the damned calendar! Dying request here!

https://alwayslookingsexy2010.alscommunity.org/GroupSite/tabid/54/albumid/278/view/ViewAlbum/Default.aspx

27 comments:

Synolve Craft said...

Carla:
Thank you for giving this gift to the lifers. I needed it. I have struggled with the "idea" and impact of loss my whole life...holding too tightly to things that were never really mine. Thank you for your words. You have helped to heal something inside me....Now, when you get to heaven, tell Gabriel I said, "Hello." Namaste Synolve

Anonymous said...

Peace be with you and yours, Carla.

Kim's mom

Anonymous said...

Dearest One
We have never met Carla, and yet I wake up most mornings and go to your blog immediately to see if something new has been written. I keep you in my prayers, wish for happiness, ease and grace to surround you, and thank you daily for the tremendous gifts you have given me, by sharing your journey and the amazing, unbelievable courage you demonstrate, every day of your life. You have brought so much to me, have reminded me of gratitude for all things, have helped me embrace my own difficulties and losses, and have caused me to marvel at your humor, wit and views on just about everything. You have deeply, deeply touched me.
So, know you held fiercely in my heart. Whatever grace is named, may it always surround, embrace and hold you...
Love, another Canadian Sister
( Montreal- home of the most amazing Bagels, Cherry Blossoms and Smarties)
nance

Vicky said...

Dear Carla: I bought the damn calendar - it's the least I can do. I am taking your Holiday Comments to heart. Bless you for your wit and wisdom.

With warmest wishes and thanks for taking so many of us along for the ride,

Vicky (Alison's friend)

gsbuck said...

You're right as always - not being able to pick one's own nose really sucks

Anonymous said...

Your friend Leslie just pointed me in the direction of your blogspot. I met her a bit ago at the starbucks that was indeed not anywhere near I-5. I have read your current post and I felt the need to say "thank you." So, thank you.
I don't know how to express to you that your son, Mac, will be well looked after, noticed, loved, and 'held up in the highest.' (That's a phrase that my Grandma used to use, and would actually bother me, but now I understand it much more acutely.)
I hope sometime soon to run into him, buy him a cup of over-priced joe, and send him on his way to continue to be that wonder that he already appears to be.

Much love,
Yvany P

Anonymous said...

It's Christmas Eve, I should really be sleeping right now, but I have to thank you for your wisdom on letting go of all the itchy fiberglass insulation, setting yourself free, not being dependent on all the unnecessary bullshit in our psyches, lives, whatever and whoever. Once again, your descriptive, cutting and edgy words have hit the nail on the head. Thanks for the gift of your writing, Santa Carla.

Claudia said...

Carla...thank you for being my incredible inspiration and tear duct cleaner-outer; you are amazing. I appreciate you and my life and my children in ways I wouldn't have dreamed possible. Your frankness in the face of death is astonishing and beautiful and inspiring and funny and great and I love you for it all.
Thank you. My regret? That I never really knew you for real, never got to hang out with you, get drunk with you, do dastardly things with you...get into trouble with you. You are a kindred spirit and I treasure the little connection I have of you. And I love that some person somewhere will have the most glorious red curls on the planet because of you. We redheads are an awesome breed.
love,
Claudia

Claudia said...

And, yes, I have my calendar on my wall already! AmaZing!
Claudia

Daria said...

Beautiful Carla ~

I have found this blog of yours on Christmas morning.
Whatever importance that date may or may not have, I am grateful beyond words.

I knew you for a very short time, on stage and in the dressing room of Threepenny Opera at College of Marin.
You were inspiring to me then and yet more inspiring to me today.

Your words are a finer gift than any one could possibly receive Christmas day or an other day of the year in eternity.

I am going to go read your son's blog now.

Thank you, Carla.
Miracles are everywhere on earth and in heaven and everywhere else, as well, and you are one, more than grand.

Daria Bauer

Anonymous said...

Dear Carla, Happy Boxing Day! lovely post! Annemarie

Anonymous said...

Dear Carla Christmas day thinking of you and your post and the thought of losing you and I haven't come to terms with that and can't bear to think of you unable to do the most basic things. (Can't imagine it because you are in my mind the most capable of people). Please feel the love I want to send you on this snowy cold New York day. So grateful to you for making me appreciate the things I have and wish I could give them to you.

You are so generous to give your beautiful red hair. You will look cute with short hair though. And like another poster my tear ducts are cleaned out, wet and fresh.
much love xxoo forever Nancy aka: Rockislandred

maggie said...

stopped by today to say have a blessed holiday season. Thinking of you and sending love your way.

peace,
Maggie

Kathy said...

Dear Carla,

I can’t remember where I found your blog (SFGate maybe?), but I’ve been reading it since shortly after your diagnosis. I was shocked to learn you are in hospice. I’ve been paying attention here, so I don’t know why I should be. But I knew I had to send this note, whether it gets read to you or not. I couldn’t let you go without telling you that I, like many of your muselings, have laughed with you, cried with you and for you, and checked in every day for your next missive. Thank you for sharing this journey with us. You have come into my life and changed me in ways I likely have yet to discover, and I will never forget you. You are an amazing person, with an almost-equally amazing circle of friends, and an incredible son. I am certain I wouldn’t be as brave as all of you are in the same circumstances. I feel like I am losing a beloved smart, funny, wonderful friend, and wish I had actually known you. I will miss you, Carla.

Kathy in Colorado

Erin said...

I just wanted to let you know I bought the calendar for my step-father who was diagnosed in July of this year. I gave it to him for Christmas and he absolutely LOVED it! Of course January was his favorite picture and “my cock still works” was his favorite caption! Thanks for putting it together; you put a big smile on his face!

Anonymous said...

As a red head, I can truly appreciate not only the sacrifice you are making for someone else, but I also know the joy that red hair - your gorgeous, lushious red hair - will bring to the recipient. What an amazing, selfless gift. I'm so sad for your losses during this last year (and the prior years as well). I am so thankful for the lessons you have taught me, though. I hope the new year brings you all laughter and no tears (unless they are for joyous things).

--lisa o

Sara said...

Carla:
I recently stumbled upon your blog and have been blown away by your brutal honesty and willingness to expose your vulnerabilities to the world. Your inner beauty, ability to find humour in living with ALS, strength and enormous talent shine through your words (and vlogs). You are an inspiration and have shown your readers how to face a debilitating illness with strength, compassion and courage. Sara

Anonymous said...

This show is so informative in what Carla's body AND THE REST of us are dealing with. It is an amazing documentary:

NOVA: What Darwin Never Knew

http://www.pbs.org/wgbh/nova/beta/evolution/darwin-never-knew.html

Annotated Margins said...

I've been following your blog for a few months. Your posts have been brave, honest and courageous. Thank you.

From a Buddhist who does not think that you'll become an ant, I enjoyed this post, and I agree with Peter Pan. I think death will be a big adventure, and afterward, I think, will be the biggest adventure of all.

From one musician/performer to another, it would be cool if you could help me get a gig when I meet you afterward.

Angel said...

My calendar arrived last week and it was AMAZING. I laughed and I cried, just like I do every time I read your stories.

Gail Hildebrandt said...

Dearest Carla; I wish I had wonderful words in my head that could come to print and let you know how touching your words are. Just saying that doesn't seem enough, my vocabulary is unfortunately limited. You are so right that it is not being dead that hurts - it's the dying that is hard. I don't know much about Buddists or Muslims but being a Christian I know we have no idea what is on the other side. It is what you do while you are living that makes the difference and you have done so very well. So many people have learned from you and been affected by your presence and that is what is meant by living on after death. You have been an inspiration and a delight to know through your written word. It is only natural that you will leave a large void in the hearts of your parents. You will also be always on their minds and their memories will be full of wonderful moments. As for your son, you are in him and will always be a part of him and someday he will probably have a little person who has red hair and is as vivacious and out spoken as you are and he will look at that person and see you.

Anonymous said...

Carla, speaking of Starbucks:

156 Countries Sing Together for the Starbucks Love Project

http://www.youtube.com/watch?v=Nh7D2g5v-Sg

This seems like something you would appreciate...the music and the people.

-a

Anonymous said...

It is January 1st TWENTY-TEN...I bet few of us growing up thought about the years past TWENTY-HUNDRED. Carla...amazing isn't it.

Claudia made comments about you being an inspiration and her regret of not knowing you when you were younger. I think many of us that read your blog, hear the stories about you from others feel the same way. Whether we are men or women we all know it would have been a peak-life experience to hang out with you. I suspect that your muses feel that way now.

I honor you past, your present and your future in whatever unfolds. You are what makes life so valuable. All that you experience, the good and bad you capture in your words and share with the rest of us.

I can't put it into words how much pure human love I have for you and your world.

Anytime I write a comment for your blog I just don't want to stop the flow of feelings.

JOYOUS NEW DAY seem more appropriate than NEW YEAR.


Namaste

Anonymous said...

January 1, 2010

Dearest Carla,
Just to let you know I am thinking of you and Maclen today. May you have peace in the days ahead.
Namaste,
Janice

Anonymous said...

"How does one become a butterfly?" she asked pensively.
"You have to want to fly so badly that you are willing to give up being a caterpillar."
"You mean to die?" asked Yellow.
"Yes and no," he answered. "what looks like you will die, but what's really, you will live."

Anonymous said...

You are magical! I have loved each and everyone of your posts.....Godspeed and I wish your transition is spectacular.....many Irish Canadian Blessings, Maureen

Anonymous said...

I love you...