Justifying My Existence – by Daniel Silveria

I was born with Spinal Muscular Atrophy and, as a result, have been a quadriplegic for most of my 33 years. My mother didn’t know prior to my birth that I would be afflicted with this illness. I was diagnosed when I was two years old. There’s no way of knowing if she would have decided to terminate the pregnancy had she known in advance that her child would be disabled; if she’d have been overwhelmed at the prospect of maintaining an extremely dependent individual with a severely compromised immune system and a questionable “quality of life.”

The thing about life is that it’s a zero-sum game. In order for one’s quality of life to be examined and taken into consideration, one must first have a life. My basic thesis here is that I’m glad that I do. If I’d have been aborted it would’ve made this far more difficult to write.

So I’m writing this from the perspective of the unaborted fetus, a not at all disinterested third party in this third rail debate. There are compelling arguments on both sides of the issue. In fact, I’m pretty sure I would be accused of riding the fence, since, though I am in favor of choosing life, when it comes down to it, I am reluctantly pro-choice. This is because I’m very much a proponent of states’ rights, as opposed to a collection of any-way-the-wind-blows politicians in Washington deciding what’s best for Joe Schmo in Idaho. The brilliant P.J. O’Rourke once compared the concept to being married, saying you can argue with the people (your wife) all you want, but inevitably it’s just going to be, “Yes dear,” and let democracy have the final say.

However, I’m just as opposed to some uninformed “it’s my body, it’s my life” able-bodied activist deciding for me and my ilk that my life, such as it is, is expendable and essentially not worth living. “To be or not to be?” is my question, not yours.

Life is worth living. When reduced to its simplest capabilities, when merely existing and drawing breath while being able to contemplate the sensation of that breath, life is worth the ride. Give me liberty, but first give me breath. And I’m not the smartest being to ever not walk the face of the earth, but having the ability to think at all allows me to appreciate the richness afforded me by the five senses. I can watch the nightly news and marvel at the human condition and all its long winded shortcomings, ubiquitous brilliance, and interwoven storylines. Despite my condition, the beauty is not lost on me. The sights and sounds all around provide more than enough motivation to get me out of bed in the morning. And even when I can no longer get out of bed, I’ll find a way to supply myself with word of the movers and shakers and what they’re moving and shaking.

If I am one day reduced to a coma, visit me in my subconscious Shangri-La with a bottle of something expensive, and we’ll raise a coma-toast. If I’m alive, I’m not unconscious. My heart still knows where to pump the blood, my immune system still knows where to find the bacteria cafeteria. Consciousness is precious beyond any words I could put here in support of it. To say nothing of the visceral realm, which is sometimes background music, but sometimes makes the little hairs on the back of your neck stand in awe. Maybe it’s a consciousness higher than consciousness.

You might be thinking that someone like me develops an exceptionally fortified wall of denial as a defense mechanism. Da Nile ain’t just a river in Egypt, after all. I don’t see it like that, though. The game has merely been simplified for me by way of removing some of the extras, and appreciation of what is replaces focus from what is lacking. It’s all relative. Somebody that most people would agree has ideal circumstances in their life might be absolutely miserable because their focus is intensely on the few things that they lack. So the opposite is often true of someone who might be perceived by the consensus as having less than ideal circumstances. I’m not saying that I constantly see the world through the lenses of rose-colored glasses. I visit the doldrums every now and then. But there’s no shortage of people pounding the doldrums. Misery loves company, so pity parties are all the rage. There are human interest stories as far as the eyes can see, where the humans of interest have a tale of woe. And the more morbid the tale, the more spectators.

It seems we are obsessed with constantly reaffirming that life is not fair. I have a very profound response to this presumption:

Duh!

We hold this truth to be self-evident – and freakin’ obvious. You’re perfectly entitled to your childish notions of entitlement, but reality has a funny way of shaking the plate tectonics of your paradigmbag. How many times do we lab brats have to run into the electrified walls of “life’s-not-fair” and still be shocked and amazed by the maze? Pearls of wisdom are produced the same way actual pearls are: via friction and time. I have been pearl-lyzed, hallelujah!

It’s my belief that depression’s primary cause stems from the expectations and entitlement mentality running headlong into the Truth Train.

The brutality of reality gives its brand of tough love to the unsuspecting gamer. We all have a predetermined timeline arranged in our minds as to where we’re supposed to be at a given point in the midst of this mortal coil. Kind of a biological clock, but applicable to endless other rites of passage we presume to be part of the grand tour. “I should have 2.3 kids by the time I’m 30 years old;” “I should be able to retire by the time I’m 65;” “I should have a house in the Hamptons with a gardener, chef, and personal misuse who doubles as my doubles partner and caddie, and drives my Cadi while I’m in the back, swigging gin & Jack on the cell with my broker, who’s got me stalks of stocks socked away all by the time I’m sprouting grey hairs.”

“Happiness never lays its finger on its pulse.” – Adam Smith

You see, we have midlife crises, earlylife crises, and end-of-life issues. But what we really have is a beautiful collection of priceless moments. Moments are in the I of the beholder.

Two years following my diagnosis, my mother got pregnant again. Strangely, some highly motivated organizations caught wind of this and swarmed down on her like vultures, offering advice and support in preventing such a horrible misfortune from happening again. Because, you know, my sit-uation is genetic and there was a good chance that history would repeat itself repeat itself. This time she knew the risks, and come hell or sick toddler, was perfectly willing to accept the results. Baby brother Andrew came nine months later, happy and healthy.

No group elected or otherwise should have authority over another individual’s life or death, or in any way feel justified in evaluating that individual’s quality of life or value to the tribe. Social engineering cannot be acceptable ever. No matter how many pretty euphemisms you try to pin to it.

You might look at me, and compared to the rest, assess what you see as flawed. Look closer you’ll find a soul and a mind. I am a living expression of God.

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Published in: on September 15, 2009 at 6:10 pm  Comments (3)  

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3 CommentsLeave a comment

  1. You're the best Holls.

  2. You are a precious gift to this world. My son has SMA. I see your soul, not your immobility. You have no need to justify your existence. You are a child of God.

  3. It is certainly interesting for me to read that post. Thanx for it. I like such topics and anything connected to them. I definitely want to read a bit more on that blog soon.

    Best regards
    Alice Tudes


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