My Whole Expanse I Cannot See…

So, there seems to be a huge split between people who only read the Times article and those who saw the TAL episode.  Basically, people who just read the article tend to see me as some kind of sad, pathetic, kind of unrealistic, tragic figure with a clearly deranged girlfriend.  These people say things like, “I think my family knows that if that ever happened to me they better pull the plug,” and “I’d be friends with him in a heartbeat. I’m impressed by him…totally. But G/F means more than friends, it implies romance and physical interaction which they obviously cannot have…so what would be this girls motivation to be considered his “girlfriend”? I think that is more what we’re all questioning.”  They assume I can’t even leave my room let alone date and make love to a woman.

However, people who actually saw the TAL episode see me as a regular fellow in an unusual situation with a really kick-ass girlfriend.  They say things like, “Well, Mike, it was an absolute triumph!  WOW.  I must admit I was not sure what to expect—perhaps some effort to make you either pathetic or a superhero (the latter being closest to real, of course), but instead I feel like the show really captured you as a complicated, irreverent, loving, independent, evolving, witty, determined, realistic, romantic fellow.  A fellow I know mostly as a boy who has become a man.  Remarkable, really, that less than an hour of film footage could capture all that.”  

I just want to shake people who read that stupid article, vigorously, like a martini. I also appreciate even more the work that Ira and the rest of the TAL crew did.

I love that in just two scant posts my blog has turned X-Rated, but the Internets made me do it!

The profound wrongness of this thread was so astonishing that I had to post the following reply.

It’s amazing to me that some of you seem to know absolute facts about my life. Still, let me just clarify a few things.

First, I’m definitely grateful to my mom and family, of course I am. She’s done lots of work to keep me alive. Yet, I was raised to feel like a pretty “normal” person, with no real difference between me and my younger brother save for the fact that he can walk and I can’t. I was never coddled or sheltered from anything. I was raised to know that I’d never climb trees or drive a car, but so what? There’s an entire world of other things to do, but sometimes I’d have to do them differently. It was never instilled in me that I couldn’t do just about anything. I was raised like a typical son, really. So, I think it’s natural that I want to leave the nest.

Secondly, I can’t imagine wanting to “pull the plug.” I like the plug right where it is, plugged in and with a back-up battery. I like my life, I don’t see it as a bunch of losses. I never walked, so I don’t miss that. Any other “losses” have been so gradual that it’s easy to adapt. Honestly, the only difficult thing about my disability is not being able to talk, because that happened quickly and unexpectedly. Still, I’m adapting to that too.

Next, I’m not trying to live “alone,” I’ll always need assistants. Those assistants just won’t be part of my family.

Lastly, Sara and I are together because we have lots of fun. We go to movies, clubs, restaurants, things any couple does. We flew to Boston last December to see an Aimee Mann concert. We have practically everything in common. I courted her and we fell in love. Oh, if sex is “NOT” a possibility for us, then I have absolutely no idea what we were doing Sunday morning.