Friday, February 20, 2009

Velveeta Fortune


You know me, I don't believe in meant-to-be, but I do believe in irony, and coincidence.

Let's preface this by saying, life has been tough lately, not normal tough, but tough with a capital T that rhymes with P that stand for Pseudomonas.

So like all beginnings to a story with irony or coincidence, I'm sitting in a Chinese restaurant slurping hot and sour soup and reading a book called "Stumbling on Happiness," by Daniel Gilbert. The author is explaining how these conjoined twins Lori and Reba swear by their happiness and confess they would never want to be separated. The author says that most "normal singleton" people when hearing of conjoined happiness, justify it by stating, ---Oh, they only say they're happy because they don't know any other way, or ---They're not really happy, they're just happy with the crap life they've been given.

We assume these woman are merely making lemonade out of conjoined lemons, or they're delusional about what happiness truly is. They've settled for Velveeta, because they've never tasted brie.

And without giving away the entire book, because you really should read it... he says, who are we to judge happiness, ours or someone else's? Maybe those conjoined twins are living a more fulfilling life -- having a partner, someone who understands exactly what it is like to be in their body, someone who has been there from day one. Isn't that what we are all looking for in life, someone who truly understands what it is like to be YOU? A person who gets it, who can finish your sentence, wipe your tears away and laugh the loudest at your jokes? They may not have a spouse or children, but they have this perfect replica, a mirror image, a friend who no matter what will never leave.

Many a year ago, I was part of the deaf community in Los Angeles. And before that I studied American Sign Language and Deaf Culture in college. One of the difficult problems my deaf friends faced was not their lack of hearing. It was their parents' inability to accept their deafness --because as hearing parents, they couldn't imagine their deaf child's happiness in a silent world. So instead of immersing them in deaf culture, and people who shared a common, visual language, parents main-streamed their kids, keeping them away from other deaf people in the hope their child would learn "how to be happy in a hearing world." Being happy in a deaf world wasn't an option. The parents assumed that deaf-happy was not the same as hearing-happy. And as you can imagine, these kids were incredibly lonely, felt misunderstood and longed for a community, where someone understood them. It's hubris isn't it? Assuming that only we "perfect ones" could understand happiness?

I haven't finished the book, but I've started thinking...

I'm jealous, green with envy of people who have healthy kids. Sometimes I think potty training and pacifier weaning and all of those 'normal' milestones that parents fret over are silly. It's hard to relate. I think, if Froggy were normal, if she'd never been diagnosed with CF or Epilepsy, if we were just dealing with these silly little frustrations, we would be happy. But because of these diseases, because of the struggles, we weren't given a fair shake at happiness. We were screwed, short-changed. What chance have we at the SAME kind of happiness our friends enjoy? With what we've been given, do we have a claim on happy? When our kiddo has hours of respiratory therapy, chronic diarrhea, when she has seizures that aren't controlled, when we are struggling financially, when we are exhausted beyond exhausted at the end of the day with our pharmacy runs, medicare calls, insurance woes, when just keeping our kiddo alive is a full-time-draining job, where is there room for happiness?

So I finish my meal at the Chinese restaurant, my garlic chicken, soup and rice and I open my fortune cookie. And it says: "Look around; happiness is trying to catch you."

I dropped my chopsticks and sit there stunned. I think "if only, if only, if only...." and that's the thing. There isn't an "if only." If only doesn't exist. And it doesn't matter. Because it's an illusion, a trick of the eye, an aberration. We don't need 'if only' to be happy. We can say if only Froggy were healthy, but it doesn't change a thing.

I'm not underestimating the sorrow of CF. I cried today hard for Froggy's lab results. Her dad and I are having a hell of a time struggling through the mucky waters of CF life. But there in the Chinese restaurant with my book and my fortune, I thought, "even with a shitty diagnosis, even with shitty lab results, even with Epilepsy, and no money, and a scary California economy, I think that in the midst of it, HAPPINESS, like a bull dog, a missile, a hug, is still trying to catch us.

I'm beginning to think that 'perfect' has absolutely nothing to do with it.

I'm not going to lie, our life is more Velveeta than Brie...but honestly, I hate Brie. That's right, it tastes like a musty basement, like an old man's dirty socks. And Velveeta, well, it's smooth and sweet, like butter, like happiness... like life. It may not cost a lot, but smear it on a Saltine and it's as good as oysters and caviar. It's just perspective. That's all. And maybe that's all you need to let go and let happiness catch you. Who knows, but I'm tired of running.

13 comments:

PwD-SD said...

I believe as humans this is our downfall. As we are always looking in the wrong places for happiness. We look at others and say boy they are so happy. But do we really know what happiness really is? Do we look through an eye of a child? As most young children See's happiness differently then we as adults.

As a person living with a disability and not all my life I went through the why me phrase. As I think we all have done from time to time as well. I guess it basically made me grow into a better happier person for I can understand things in a different light.

Angela said...

I'm running to buy that book!
This is a great post.

DutchMac said...

Amen! Everytime I catch myself feeling jealous over what one friend or another has, I find out something in their lives I'm grateful to NOT have. I get fooled by the apparent perfection in their lives, only to be shown later that they're just as tarnished as us, even if not visibly.

And while I may live in the land of clogs, windmills, and cheeses the size of truck tires, there's nothing as good as tortillas dunked in Velveeta-n-salsa. Screw the posh European fine-dining, I'll take Midwest comfort food any day.

Mieke said...

Have I ever mentioned what a wonderful writer you are?

Cara said...
This comment has been removed by the author.
Cara said...

This was a beautiful post.

Personally, I'd take Velveeta over stinky Brie any day. I think it has more fatty deliciousness. :)

Julie said...

Thanks for this post. It was wonderfully written.

fleetfeet said...

Happiness=gratitude for garlic chicken, for sweet and sour soup (yum!), for fortunes, for Velveeta, for specialized CF centers, for TOBI, for Cipro, for Froggy, for family, for love. Sending love and gratitude for YOU from the Midwest...

Infidel Rooster said...

Perfect is the enemy of good.

Julie said...

Hi Elise - I met you last summer at the CFF brew ha ha. My 7 yr old son Jacob has CF. I have checked in on you blog a couple of times and stumbled back across it today. I can relate to some of your sorrow. We are not currently fighting PA (although I am waiting for a call back on his latest cultures) but on his last cultures we were introduced to MRSA. Just when you get comfortable with the old... Jacob has really begun to struggle with the emotional aspect of having CF. He doesn't want to be different. I try to explain that everyone has their own issues. What he hears is blah, blah, blah. He wants to have a friend with CF. Sometimes I get so jealous of the old time CFers that got to roam the halls with each other when they were in the hospital. I too sometimes have to remind myself that there is happiness all around me. Then I close my eyes and listen to my children laugh so hard that they literally can't speak. Anyway, I'm not sure where I'm going with this other then to say I can relate. I really hope things calm down for you.
Julie Malchus

jessicagv said...

Thank you for posting this. It is so true, so perfect and just what the majority of this world needs to read.

Anonymous said...

i want to print this out and read it every morning. gosh...what a beautifully written post. i have tears. hugs. jcn

Anonymous said...

You are such a wonderful reader. I am sorry for the yucky news on her culture. I hope those bugs leave quickly. Keep us posted and thanks again for the post. I have often felt envious of others because they have a child without CF but your post has started me thinking about being happy with the wonderful and beautiful child I am blessed with now.