Entry 826 – Admission Time

The night before last, Rob slept over again.    I love it when he does that.  When we woke up yesterday, we had some food and then watcehd Alan and Naomi.  And I’d gotten the mail and discovered how gorgeous it was outside, so I dragged him outside after the movie.  We went back to that park with all the balance stuff and whatnot.  He is getting better.  It was so cute, there’s another set of those stump thingies, but these don’t go in a circle.  There’s a bigger platform and then six sets of four stumps that go out in different directions.  So Rob’s all like, "Okay, I shall conquer these!"  And every time he walked down one, turned around, and walked back to the bigger platform, he was like, "Ha!  I have conquered you.  Now I shall conquer . . . this one!" and he’d point at another one.  It was so cute.  I just stood off to the side on stumps that he wasn’t on and watched him.  He wondered on the look on my face at a couple of points cuz he couldn’t figure out my expression.  I didn’t know quite what to say, but I figured it out later that night.  I was proud of him.

He’s told me before that because of the medication he takes, his balance is affected.  He’s told me his doctor told him that, that it’s one of the side effects.  And I’ll give him this: I looked it up, and yes, loss of coordination is one of the side effects of phenobarbital, which is one of the medications Rob takes.  However, I say, "Okay.  So does that mean you’re not going to work to correct it?"  And I brought up something else the night before last.  What’s he gonna do?  Automatically believe what a doctor says based on statistics, or believe proof he gives to himself?  And when we’d come back to the house after a bit of rollerblading, I looked at him and said, "Don’t be a statistic."

Now, before anybody jumps on me about what medications can do to a person, I know it’s not always a matter of "mind over body" or some such, or that believeing you can do it will take away the reality of any losses in whatever that medication can cause.  However, I do believe that someone shouldn’t just automatically believe ‘okay, I’ve got these limitations on me because the meds will do this.’  That’s selling yourself short and I refuse to let Rob do that to himself.

I think that soon enough, I’m gonna write down my complete theory on epilepsy in here.  I want opinions once I do that.  I want to know what you people think are good ideas, are reasonable, are ridiculous, etc.

Well, speaking of admissions . . . and since this is a diary, so to speak . . .  This is something I wanna talk to Rob about, because he should know I feel this way.  I just haven’t been able to bring it up to him yet.  I don’t want him to get the wrong idea.  But sometimes . . .  Sometimes it scares me to death that I’ve gotten so close and care so much about him.

My mom once said, in regards to Ryan who’s Obsessive-Compulsive and Attention Defecit, that the one who goes out with/marries him would have to be a really special girl to be able to deal with those two things.  Cuz Ryan does have his odd quirks, in addition to a couple of rather scary things, one of which I saw happen to him.  He has that under control now, but even so . . .

Anyway, my mom’s words have been coming back to me more and more lately and honestly, I’m seeing how right she is.  I still haven’t determined which I think is worse, epilepsy or OCD.  I had an answer at one point, but honestly, I don’t know which would be worse.  They’re both debilitating conditions, (or can be anyway,) that, especially at their worst, can take over a person’s life.

I guess the bottom line is that I haven’t even admitted to myself how much his epilepsy truly scares me.  I was able to see Shaun’s as a joke to a degree because as close as I ever got to him, it wasn’t anywhere near a romantic sense, and he helped make it funny.  Plus, he didn’t have the same kind of seizures Rob does.  Has.  Can have.  Blah, I don’t know.

I do know that I want to tell Rob I feel like this.  Heck, feeling like this is probably part of the reason I’ve done as much research and come up with the theories that I have.  Lack of knowledge breeds fear and ignorance and all that.  Also, I want to see him get over this.  And that in itself is a rather ironic statement, since so many cases of epilepsy are controlled, but never cured.  On the converse, though, I don’t think that’s the case with Rob.  I think he could be one of the people to be seizure free for a year and to be able to get off the medications.  And to be honest, I expect to see that happening and to be there for him when it does.

But, and this I have said to him, I already worry about him more than he’ll ever know.  It’s why I ask so often if he’s okay or whatever.  And I know, most people will tell me that something like that is normal, of course I’m gonna worry about someone who’s body could literally spazz out on them at any point without (much) warning.  But I don’t want to be one of those people who does that to him.  I don’t want to be someone who hovers over him, wanting to protect him from every little thing.  Regardless of the fact that I do want to hover over him and protect him from every little thing, I refuse to turn into that.  I don’t want him to see me as someone who does that.  Protect him, yes.  The same way that he wants to protect me.  That equal-share thing in good relationships, you know?

::Sighs::  I guess my main fear in this is . . . my mom said it would take someone special to be with someone like Ryan.  The same thing applies to Rob.  It takes someone special to be with someone like him, simply because for so many people it’s hard to see a person first, epileptic second.  Or how I phrased it once before, "seeing him as a person with epilepsy, instead of an epileptic trying to have a life."  I’m not saying I have that problem.  I knew about his epilepsy when I first started hanging out with him and I’ve always seen him as a person first.

I guess . . .  I don’t know.  I guess the idea of seeing him have a seizure is just scaring me more and more.  Not to mention that it’s been about four months since he last had one.  I want to see him make it a year.  I want to see him make it longer than a year.  I want to see him being completely seizure-free.

My main fear in all this is that . . . I’ll find out I’m actually not strong enough to deal with this.

Yet, part of me knows that’s absurd, considering Shaun and considering the other mental things I’ve seen.

Lol.  Okay, I just stopped writing for a good five minutes because I was listening to Alice’s Restaurant.  Lol, you know, for anyone who’s heard that song and knows my dad, does that song sound like a story that my dad would tell?  I was practically rolling on the floor when Rob said that one.  I asked him what he thought of the song, and

he’s just like, "It reminds me of stories your dad tells.  You know, blah, blah, blah, ‘but that’s not what I came to tell you about.’"  LOL.  I couldn’t breathe for a good half a minute after that one.

Okay, anyway.  Oh!  That was something else.  Last night, when we were watching Mermaids, we got to talking about how long we could hold our breath.  I should have gone first.  Cuz Rob went first and he held his breath for almost three minutes!!!  I was amazed.  Just downright amazed.  Two minutes and 56.91 seconds!  I couldn’t believe it.  I can’t wait till this summer.  I told him give me a month where he’s putting in honest effort and I’d teach him to swim.

That should be interesting . . .