Entry 824 – Wondering How I’d React . . .

The more I drag Rob outside to places and the more he resists trying something at first, the more I wonder how I’d react if I was in his position.  I’m just gonna copy and paste something I was talking about in an IM with someone yesterday.  Then of course my thoughts on all of it afterward, cuz I didn’t get them all in the IM.

Long story short, I’ve been aware of epilepsy since I was little because I was always a fan of Abbot and Costello and Abbot suffered seizures.  Then, my junior year, I met this guy named Shaun who has it.  He and I became really close for a time there, and I admit, the first time I saw him have a seizure, it scared the Hell outta me.  But after that, it sorta became a joke between us.  He’d have one, it’d last for all of seven seconds or so, it’d end, he’d say "Damn!  How long was that?"  I’d tell him and he’d usually say damn again.

Then there was the time he had one when walking up to the teacher’s desk.  He fell backwards and was complaining for the rest of the day that his ass hurt because he fell on his wallet.

Well, Shaun and I stopped talking for a while, only recently regained contact, because he moved out of state.  Since then, I had no contact with anybody epileptic, until Rob.  And he had what are called grand mal seizures, basically the most serious kind.  (Where the person does lose consciousness and all that.)

Anyway, Rob takes medication of course, and he hasn’t had one of the grand mal seizures from what I’ve heard in years.  Petit mal, however, which are basically seizures where the person freezes, he still has occasionally.  The last time he had one, he told me, was a couple months ago.  And I’ve always been the kind of person, my entire life, I’ve loved going outside, wandering around in the woods, climbing trees, walkig on fallen trees like they were balance beams, etc.  Rollerblading and roller skating were huge parts of my life growing up.  They still are.  So’s something like swimming.

Rob, on the other hand…

He didn’t always have seizures.  His epilepsy came out of dormancy because of a head injury when he was twelve.  Before that, and even for a few years after that, he was a lot like me, I think.  He’s told me he rollerbladed, he biked, heck he took martial arts at one point.  But as his seizures got worse, (he wound up in the hospital after hitting his head because of one,) his parents started restricting what they’d let him do.  They said no more rollerblading, no more biking, etc., so he got used to just stayig inside and watching TV, or movies, or playing video games.

Heck, I have no idea why they let him come ice skating with me in December.  I mean, they didn’t know me then.  For all they knew, if he had a seizure, I could’ve freaked out and never wanted to come near him again, you know?  I’m definitely NOT that kind of person, but they didn’t know that.

Anyway, since he and I’ve been hanging out and especially since we’ve gotten together, he’s told me I help him feel like he’s just another normal twenty-four year old.  And I love that.  I mean, I bring him rollerblading with me, I bring him places that I know I like going to and think that he’ll enjoy, too.  That’s just me being me, you know?  But I can’t help feeling . . .

Well, yesterday, I brought him to this park where schools used to bring the kids and there were all these single/group challenges to attempt.  And there are these logs there set up in sort of a square shaped balance beam.  I kept telling him to just try doing that and even before attempting, he’d say he couldn’t, he has next to no sense of balance, etc.

Yet I’m able to do all those things with a fair amount of ease.  I admit, I’ve got a sense of balance/reflex/coordination that is above most normal people’s . . .

But I almost feel like… like by bringing him to these places that are so normal for me, and where I’d be bringing him to give him a sense of the "normalcy" of my life, I can’t help feeling like I’m showing him how different he really is.

Does that make sense?

I hate it, too, because I’m quite certain, don’t ask me how, it’s just something I see in him, that he could be just as good at this stuff as I am.  He could rollerblade just as well, he could follow me on those beams just as well, he could do any number of physical things just as well as I can, but because those are all things that were taken away from him, it’s like he’s afraid to try and get them back… maybe because he remembers how he was and doesn’t want to know how far he’s fallen?

It’s just so frustrating, though.  I mean, I see where his parents were coming from, stopping what he did physically, but… I don’t agree with it.  I never will.  I see their reasoning, but I’d never be able to do that to my kid.  I’d definitely have restrictions. I’d tell them flat out to not do these things alone, always have a friend with them who knows what to do.  But I could never stop them from doing whatever it is completely.

It honestly does get to me, too, when I hear him say how he can’t do something as well as I can, because I hear this undertone of, "and I never will."

Heck, his dad has been the one to tell him that he can’t do certain things because "he’s got limitations that other people don’t."  Which once again, drives me nuts, because they should be encouraging him to test what his capabilities are, not sheltering him to this point.

I did talk about most of this with Rob later on yesterday.  He did confirm one thing.  That part of why he was so resistant is that he doesn’t want to see how far he’s fallen in ability.  The rest was that he doesn’t want to fail.  Or disappoint me because he can’t do something.

To which I said flat-out that he wouldn’t disappoint me by not being able to do something, the only way I’d be disappointed is if he didn’t try at all.

When we were at that park the day before yesterday, I remember I was sitting on one of those square balance beam thingies and he was standing a few feet away in front of me.  We were going back and forth once again with basically the same old stuff.  Why doesn;t he want to try this and yada, yada.  And he told me about how everything physical that he used to do was taken away from him, that he can’t do that kind of stuff anymore.

That wasn’t something new to my ears.  He’s told me about his parents doing that before and him believing that he can’t do this stuff now.  What was new was his tone of voice.  He was angry.  Now whether it was at me for making him say that, or if it was at the fact that these things were taken from him, or perhaps a combination of both, I don’t know.  But that’s the first time I’ve heard him sound truly angry about . . . anything, really.

I remember, one of the things I mentioend to him that day was that I didn’t understand why, when someone is trying to give back to him what was taken away, he isn’t jumping on the chance to embrace it.  But I was thinking about it today and I think I arrived

at an answer.  If I was in his position, yeah, I’d be grateful that someone wants to give me back what I’ve been missing out on for what amounts for him to be years, but I think I’d also be resentful.  Not of the person trying to give these things back, but just resentful of the situation.  Undoubtedly for me it would bring up feelings of, ‘this stuff should never have been taken from me in the first place.’

I don’t think it should have been taken from him.  I know if it was me, I’d have fought tooth and nail to be able to do stuff outside and to keep what I loved doing.  But I know, he’s not me, and we definitely have two very different sets of parents.

When you see how good a person can be at something, though, how can you help but push them towards that goal?