Wednesday, February 24, 2010

If I Never Knew You

If I never knew you
I'd have lived my whole life through
Empty as the sky
Never knowing why
Lost forever
If I never knew you.
--If I Never Knew You, Stephen Schwartz

How do you convince people that life is better than no life at all?
That all lives are worth living, no matter how painful? 
For some can't.
I've written about this a few times here. But today brought it into a painful and stark perspective. There are people out there who think my life, and that of hundreds of thousands of others, is not worth living. 
Today's Dispatch held this example. I'm posting the whole letter instead of linking to it. 
My emphases in bold:

Pre-birth testing foe needs context
Wednesday,  February 24, 2010 2:51 AM
I respond to the Friday letter "Hitler would approve of pre-birth testing" from Thomas R. Marco. He references the killing of babies and asks "is reducing the statistical percentage of abnormalities worth such horrific acts?"
My answer is: You better believe it's worth it. Before others judge, they should know a little more about the "abnormalities." My daughter was born with Tay Sachs. My wife and I watched her suffer for just under three years.
We watched her slowly die and live a difficult and very uncomfortable life.
We watched and listened to her scream in pain and frustration for hours at a time. We watched her as she lost the ability to sit, to eat, to hear, to see, to do anything but suffer. Then we watched her die while she was in my arms. I carried her out to the hearse.
If any child can be spared that by pre-birth testing, then I am all for it.
Better yet, parents should have genetic testing prior to trying to conceive so that everyone's moral sensibilities can be assuaged.
Until Marco has spent a minute with a child whose short life is filled with suffering, I suggest he be more careful with his Adolf Hitler references.

So--his daughter's life wasn't worth living? 
He would have 'spared her' by not allowing her to be born at all.

This is MY letter to the editor. I sent it this morning, not sure if it will be published. But I want to share it with you anyway.
To the editor:
I was disturbed by Kevin Levine's "Pre-birth testing foe needs context" (Letters, Feb. 24, 2010). He states that "...if any child can be spared [suffering] by pre-birth testing, then I am all for it." I am sorry for the death of his child, and the pain that his family endured. But his logic is simply faulty.

Mr. Levine is essentially saying that I should not have been born, because that's the only way I would've been "spared."  I am twenty-seven years old, and was diagnosed with cystic fibrosis (CF) when I was 11. Since then, I have spent months in the hospital, had a two-week visit to the ICU, undergone countless tests, and, at the age of twenty-three, had a double lung transplant. Before my transplant, most of my days were spent sleeping. I hadn't the energy to do anything else. Even simple tasks such as brushing my teeth took enormous energy. I was in almost constant pain from the lung infections and scar tissue that are part and parcel with CF.

But I have never considered my life not worth living. I love my life.  I am a college graduate, am working on a Master's Degree, and have a good job. I have wonderful family and friends and an 11-year old godson. I have been under the care of brilliant doctors and nurses who have worked tirelessly to save my life. If I had not been born, I would have certainly spared myself and my family much suffering. But the joys of life would not have been mine, either.

My CF has made me who I am today, and I'd like to think that's a good thing. No matter what the challenges my life may have handed--and continue to hand--me, nothing is more precious than the gift of life.

Suffering cannot be avoided in any life. It's part of being human. Just because a person has to suffer doesn't mean that her life is not worth living. As Robert Louis Stevenson said, "Life does not consist in getting a good hand, but in learning to play a bad hand well." 

How can anyone--especially a parent--say that someone's life was so filled with suffering and tragedy that it wasn't worth living? How is that not monstrous?
My parents have watched all those things too, Mr. Levine. And I'm pretty sure I'll die before they will. They've had 26 years of it. 
Would I have saved my family money if I'd not be born? For sure.
Would I have saved them lots of emotional pain? Definitely
Would my brother and sister have gotten more attention? Absolutely.

Will you decide what men shall live, what men shall die? It may be that, in the sight of Heaven, you are more worthless and less fit to live than millions like this poor man's child. Oh, God! To hear the Insect on the leaf pronouncing on the too much life among his hungry brothers in the dust!
--Charles Dickens, A Christmas Carol

Would they be better if I hadn't been born?
I can't answer that. If you never knew someone, how do you know what you're missing? 
But I know--and no matter what price I have to pay, it was worth it. The entirety of it.

I realize then that we never have children, we receive them. And sometimes it's not for quite as long as we would have expected or hoped. But it is still far better than never having had those children at all. 'Kate,' I confess. 'I'm so sorry.'
She pushes back from me, until she can look me in the eye. 'Don't be,' she says fiercely. 'Because I'm not.' She tries to smile, tries so damn hard. 'It was a good one, Mom, wasn't it?'
I bite my lip, feel the heaviness of tears. 'It was the best,' I answer."
--Jodi Picoult, My Sister's Keeper 


Valerie said...

Oh, Em - this brought tears to my eyes. As you know, Sara has suffered, too, from the ravages of illness. Her life to me and Cam is SO infinitely precious. God blessed us with a daughter, and He gave her to us because he knew we were the ones who would watch over her suffering, pray for her, attend to her needs, and be grateful for her presence every single day of our lives. I'm sure your parents feel the same way about you! Thank you for having the courage to write this to the editor! Love, Val

Romans 8:31 said...

em, this is amazing :) i love you so much and you know what? you having CF has given me the passion for being a nurse and I can't thank you enough for that. You have showed me empathy in a way that no "Potter and Perry" textbook could have. I love you