robisons

If you would like to hear my take on an article that fascinated me, read John Robison’s “An Experimental Autism Treatment Cost Me My Marriage” and then come on back.

If Dar can ever write words that approach anything like John Robison’s coherence, it will be a full-blown water-into-wine miracle. As a parent of a severely autistic child, I hear from people at John’s approximate position on the spectrum and I sometimes think – and I’m not proud of this – “oh, well, that’s not so severe, big deal.”

Not in this case. John fascinated me. I’d be happy to read more of what he has to write. He has a Hemingway-like gift of not wasting words and getting right to the scary point. I can see why his 2007 memoir “Look Me in the Eye” is a best-seller.

Even before the moment in this 2016 article where Robison wrote “I felt this push to use my new superpower,” he reminded me of Matt Murdock, a.k.a. Daredevil, whose latest batch of TV episodes just dropped on Netflix. Comic-book fans will know that as a child, Murdock was blinded by a radioactive isotope, which also heightened his other senses. John’s passages seemed straight out of some of Stan Lee’s prose:

It sounds like a fairy tale, but the next morning when I went to work, everything was different. Emotions came at me from all directions, so fast that I didn’t have a moment to process them…

The signals I now picked up about what my fellow humans were feeling overwhelmed me. They seemed scared, alarmed, worried and even greedy. The beauty I envisioned was nowhere to be found. Seeing emotion didn’t make my life happy. It scared me, as the fear I felt in others took hold in me, too. As exciting as my new sensory ability was, it cost me customers at work, when I felt them looking at me with contempt. It spoiled friendships when I saw teasing in a different and nastier light.

There’s been something about Marvel’s blind lawyer that has brought out the deepest pathos in comics. It gets dark – in more ways than one – and we fervently pray for the light.

John Robison saw the light. Only to lose his friends and child and wife.

I thought about the recent movie The Theory of Everything, where Stephen Hawking and Jane Wilde find a good life together…until he gets his superpower of a speech device. Now, I’m over-simplifying it, but viewers of the film will know what I mean. It’s also related to the material in the play, and movie, Children of a Lesser God. Will we still love each other if I don’t have this disability? And why does it have to be such a “dis”ability anyway?

That’s why I have a lot of respect for John Robison’s article. That he didn’t just sit on his laurels as a best-selling author – he began the treatments in 2008. That he could face this and still force himself to change: “My wife, my son and my friends liked my unflappable demeanor and my predictable behavior. They told me I was great the way I was, but I never really agreed. For 50 years I made the best of how I was, because there was nothing else I could do.”

And then he starts the treatments, and his wife and son become estranged. (Though it’s hard for me to tell if this 2011 article was written during the estrangement; his son seems to have no problem hanging out with his Dad.) And that he can recognize and name depression for what it is. (I have five family members, at least as close as uncles, who committed suicide, so I know how hard it is to even name the condition.) A cynic might say that this guy was trying to get out of his marriage, or wanted the limelight after his son seemed to take it. I see a disabled man with the breathtaking courage to become the best version of himself.

These get to existential issues. What’s better, being happier or healthier? Is there a difference? Disability can throw off everything you thought you knew about your ethical system. Kind of like being a conservative and seeing Donald Trump rise to the top of your chosen party.

If there was some kind of “miracle cure” for Dar, would we take it? We’d certainly think very seriously about it. We’re thinkers. We’re planners. We’ve had the sterilization conversation. We’ve had the rewrite-the-will conversation.

I always think of that Paul Simon lyric from the song “Proof”: “People go crazy on you, they say, that’s not the deal we made, I got to go, I got to go.” Perhaps this sounds tautological or obvious, but I really think that’s the #1 reason that marriages break up: that’s not the deal we made. And disability is such a deal-breaker, such a wrench thrown into those gears. Recovering from it, being victimized by it…I think of an Australian movie that absolutely nobody has seen called Lantana, where Geoffrey Rush, breaking up with Barbara Hershey, yells at her “we lost a child!” and she answers with tremendous conviction, “That could have brought us closer.” She doesn’t convince Rush, but she convinced me.

In my blessed, blessed life, losing Dar to disability – or damn close to it – has brought me closer to my wife. I cannot stop thinking how lucky I am for that, every minute of every day.

Thanks John Robison, for another reminder. And I sincerely wish you the best of luck being who you genuinely are.

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