Am I being too positive?

Back when I was a student my middle was a dark place of pessimistic nihilism shrouded in impenetrable angst. Life was devoid of meaning, and always would be. Just to make sure that the fact wasn’t lost on people, I wore a very long, black coat that had a velvet collar. That collar was a little bit ticklish, but on the whole it was a small comfort that I could always turn to as I wandered through those late teenage years of unspeakable weltschmerz and uncertainty.

Somewhere along the way the angst got forgotten. I think that the bank’s relentless requests for me to focus on my overdraft and concentrate on making it an underdraft somehow removed much of my world pain. The Smiths split too. Morrissey got all stylish and The Cure seemed happier somehow. By ’92 they’d be doing this. Everybody was either emigrating or getting a job at home and I just couldn’t keep the dark moodiness going on my own. You need time for that kinda thing anyway.

But change is the only constant, right? And the last twenty years have seen plenty of it. Ups, downs, sidewayses… Mostly though with sunny side up. I saw Leonard Cohen in June this year, and he was sublime. I knew he’d be damn funny too when early on in the gig he said he’d tried lots of different religions, ‘but cheerfulness kept breaking through.’

And that expression got me to thinking. Cheerfulness keeps breaking through with me too, but of late I’m sensing that it can cause upset to others. I’ve been dealt some lucky cards in my time. I’ve gotten some real jokers too. Now I’m wondering, is my natural proclivity for seeing the positive resented by others?

I was involved in a group discussion recently where someone was having a hard time with themselves and their expectations of and hopes for their DS child. Perfectly normal on any given day. My commentary, as is often the case with me, was upbeat and positive. Another voice in the discussion said words to the effect that if you don’t have regrets for your child with DS then you’re not progressing.

The comment stung me at that moment. I personalised it because, in the eight months or so that Jacob has been with us, I did not ever wish that he didn’t have Down syndrome. I had become immediately immersed in the special needs of my boy, but the thoughts of him not having DS, or the idea of wishing there was a cure, never entered my mind.

With that one little comment, I felt like I’d run into that Wile E. Coyote fake tunnel painted onto the cliff face.

Does this make me a bad parent, not wishing for better for my child? It seems so, in a courtroom drama sense at least.

Prosecuting lawyer adopts chummy elbow-on-bench pose as he addresses the jury.

‘Now ladies and gentlemen, are these the actions of a caring father, a father working towards the betterment of his dreadfully disabled son? No they are not, ladies and gentlemen. No they most certainly. Are. Not.’

Open and shut. Let’s all go home. But hold on a minute. Hold on there a minute. Just hold on a minute. I’m here a wee while. I’m beginning to know myself. I’m not Captain Hip Hip Hooray, but on the whole I am a cheerful guy. Glass half full of lemonade made from the lemons, yeah? Jacob came as he is. I took him as he was. There was no more to it. His day has a slightly different structure now than his brothers did at his age, but once the physio, slower feeding and sign language etc have been factored in – and even as they are BEING factored in – I do not see the difference. Occasionally it is brought home to me. Like when I see his cousin, who is slightly younger, easily surpassing him with milestones. Or when he has a particularly square-jawed downsie look. But I cannot imagine ‘fixing’ him.

I have been chided once or twice by she who is nearest and dearest to me about my optimism. She’s right, because sometimes it is inappropriate. On more than one occasion she has said that ‘If it was up to him, EVERYBODY would have a kid with Downs.’ Not PC enough for you? Probably not. But on those occasions, when my heart is overcome with the straightforward, no-strings-attached love that funnels between him and me, I wish this for everyone. Yes I do. Maybe I don’t know enough about the future and its trials. Maybe I’m a naive fool. But right now I do not care that his Leaving Cert results will not matter in quite the same way as mine did, or that his career trajectory will not be stellar in the Wall Street sense. I do not care. And if I am lucky I will not care later either. His life will have its own worries. Whose doesn’t, exactly? Much of what he does will be judged on a different scale. As I look back from the (hopefully!) half way mark I wonder whose will be the better quality scale when the final courtroom verdict is in. I’ve seen one or two judges in my time make one or two fool judgement calls.

I’ll deal with the problems of the future when they come to find me.

The judge peers over glasses and under bushy eyebrows to address the jury.

‘Gentlemen and ladies of the jury, you are directed to deliver a verdict in the case of A. Cheerfulidiot. What say ye?’

Death before disability!

So. Take an average 100 US citizens aged between 35 and 44. Ask them which would they choose: death or severe disability. 63% of them will say death, according to Forbes.

I have a healthy scepticism when it comes to research generally, but this poll makes for an interesting overview of our American cousins. It reveals that the better the education, the less tolerance for the thought of living with a disability. 57% of college-educated people would rather die, but only 30% of people who didn’t finish secondary school felt the same way. Who’s the smart one?
Could it be that life tastes sweeter when it’s tougher to maintain? Curiously, Southerners believe that life is worth hanging on to more than their West Coast counterparts do, even if it means – gasp! – living it at a disadvantage. I’m not local enough to draw any firm conclusions from that clich├ęd sounding nugget, so I’ll keep my counsel.
Of those 63% death wishers in the 35-44 age bracket, I ask myself how many are technically obese. There have to be some. I would consider obesity to be a disability. Either minor or major, but debilitating nonetheless. I can’t see them killing themselves to be rid of the debilitation. Well, maybe very slowly.
Ask a person a question and they’ll give you an answer most of the time. Might not be a terribly sound one, but they’ll open their mouth and an opinion will issue forth. ‘Oh God I’d rather DIE than live in a wheelchair!’ Oh really? Oh… really… ? Somehow I don’t think you’ve thought this through, Citizen. Life’s worth hanging on to, and never more so than when it’s dangling by the slimmest.
I am fortunate not to have a major disability. My wife will not vouch for that, but my frequent inability to process the simple information she relays through me does not qualify as a major handicap. (No dear, it does not.) But I stand close enough to one who has a comparative disadvantage. So close that my perspective has changed utterly. And the idea that life is less worth living for my ‘disabled’ son is so ridiculous now – on an emotional, rational, instinctual, practical or whatever-you’re-having-yourself level – that I find it difficult to contemplate even as a theoretical exercise. I am different now. That is all.
I would like to think that if I found myself suddenly blind, for instance, I would still want to maximise life as much as I do now. I cannot be sure, but I am sure that I wouldn’t want to kill myself in preference to at least exploring the options. Why would I? Because of the struggle? Struggle is everywhere. Yes, life in a wheelchair is struggle. And on kidney dialysis. Ataxia. Needing a new heart. Having Alzheimers. Anorexia. But life without any of these factors is struggle too. The older I get the more I see struggle, real struggle, etched on the faces of impoverished children. It still doesn’t make them want to leave the greatest show on earth.

Life is sweet. Even at its bitterest, life is sweet.

So you think you’re normal

If I am to hold with one definition by the Merriam-Webster dictionary, then normal means ‘occurring naturally.’

Well that’s Toyota Corollas out. You just don’t come across them growing new in the fields. And cream buns definitely don’t grow on trees. Nothing ‘normal’ about Charles Gounoud’s Ave Maria either, I reckon. Shame. I like cream buns and Toyotas and I sure do like a little bit of that Gounoud spread on some of that Bach toast.

If that means I have to give up normality I think I’ll take a chance.

Jokes aside for a minute. If, say, between seven and ten percent of people are afflicted by a ‘difference’, so that people will ridicule them, treat them with prejudice and socially stigmatise them, are the normal people right? Is the minority wrong for being different (through no fault of their own by the way, just a quirk of genetics)? Is it not enough that this minority already has to deal with enough practical difficulty every single day? That the things others take for granted, like driving a car or handling most sharp implements, are already more difficult for them? Do they have to be historically judged as deviant too? Just too far off the beaten path to be wholesome. (Sinister, in fact, was the Latin word that applied to these people for centuries.) Add to that the statistical nugget that these poor sods are going to live, on average, NINE YEARS LESS than us lucky normal ones, and you’ve got a simmering, righteous stew of not fair.

Want to know the real surprise? This group of poor, abnormal freaks is right under your noses and you don’t even notice them. They don’t stand out like, say, people with Down syndrome do. Nope. They just happen to be ‘unlucky’ enough to use their left hands in preference to their right. Lefties.

CRUCIFY THEM!!!

Ok. I hold my (right) hand up. I led you down the path maybe, but I’ve told you no lies. I just used poor, misunderstood lefties to highlight a very important fact. I could’ve used any number of groups with statistical oddities. Check these out. Completely random.

  • Between 40 -45 million people worldwide are blind
  • 1% of the UK’s population suffers from chronic coeliac disease
  • Countless millions are prisoners to panic attacks
  • Some people cannot walk on pavement cracks
  • Some people have a morbid fear of air travel
  • Four out of every 100 people have red hair
  • It’s estimated that up to 60% of people cannot swim
  • You will be, or have been at some time, only two steps removed from a suicide victim
  • Millions pay money yearly to sit exposed in cancer-causing radiation from our sun

Here’s the truth, peeps. The world is populated by abnormality. It’s full of the freaks. Watch out, they’re everywhere! And the bad news is, by the time you’ve assigned everyone to their category there ARE no normal ones left. And if there are, how abnormal must they feel? Christ in Heaven, some people buy Celine Dion albums!! We’re all weird, except for me and you, of course. And I am very unsure about me.

Incidentally, it’s important to remember two things about statistics. One is that 87% of them are made up. And, as a lamp post to a roaring drunk, they’re usually more useful for propping up an argument than they are for shining any useful illumination.

Catch you later, weirdos.

Fantastic, fantastic news

Yes, the news you’ve all been waiting for! After a ten day period when I got absolutely NO running done I managed to squeeze in a quick twelve k today! Yes yes, I know! It’s wonderful! You may cheer and rejoi- Excuse me? You don’t give a hoot about my running?

Well fine.

Be like that. It doesn’t really do you justice as your mothers would’ve hoped. But if you insist on looking for more news then I suppose I could throw out that JACOB CAME HOME TONIGHT!!

WOO HOO!!

He lay stretched out on Christopher’s bed at story time, looking at the poster of pirate flags, as Chris and Andrew tried to find Wally (Waldo to the US crowd) and everything assumed a delightfully normal chaos once again. Let us hope that it lasts.

Chris reunited with his wee brother

Guess who’s back. Shady’s back. Yes he’s back yes he’s back yes he’s back yes he’s back…