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Well, the newest news is that Joe is taking Karen and me to Disney World for 5-7 days to spend our mornings at Epcot Center and the Animal Kingdom and our afternoons by the pool. Not only was this decision made suddenly, and under pressure (Joe: “I want you to come, Pam...”) but if reservations can be made, we will be going sometime in May.
That's wonderful news, you say? You must be thrilled!
Anyone else would be, I suppose. But me? I dread it now and will continue to dread it more and more as the days pass. I understand that I cannot say no. Why? Because Joe may never get to do this again, and I should want to be with him when he sees Epcot Center, which he has always wanted to do. This may be his last chance to live it up, as much as he can, eating through a tube and breathing with a machine (only at night so far).
So I guess I’m going, but there's no way it is for my enjoyment. I only do it for Joe's. For my part, the sheer materialism of it appalls me, both Disney’s and our own. I, for one, want no part of that whole world of plastic. Consume, consume, consume. The whole idea of Disney World sickens me. And bores and wearies me.
But there is more: I don't know how I will be able to tolerate being around people that long, with no privacy or time to myself (unless Karen and Joe do go to the pool, in which case I can have some time off because I cannot sit in the sun, or even in the shade in bright light -- it simply is a certain way to induce a migraine, which would only incapacitate me. Nor can I tell if I can stand the crowds or the noise or the over-stimulation of the place. But there's nothing for it but to go down there and try my best. I have no choice.
I am not being a kill-joy here. Generally speaking, I enjoy whatever I do. I love making jewelry for people and sculptures and seeing Joe and Karen and Lynn and Cy and my parents etc. I love writing, and am thrilled when I can read. And need very little in the way of external stimulation to keep me happy. If there are trips I might be able to enjoy, I know there are places I would better tolerate under different circumstances, and people I would rather, alas, travel with. I love Joe, yes, but I would not enjoy traveling alone with him; he never tells me his true opinions or wants, and so the burden would be on me to make all the decisions and I'd only find out later that I didn't choose correctly, though how I was supposed to know I can’t guess. And since neither of us knows how to travel -- both of us being in some sense wimps -- we'd be hopeless if we ran into any sort of glitch. We would not be able to laugh at the situation or ourselves either, being too upset and confused by what steps to take next.
Karen, having been a travel executive before she became disabled, really does know everything there is to know about traveling. She could get us anywhere and handle any situation, I am certain of it. She is assertive and even manipulative in order to get things to go her way, which can be handy when in a pickle or handling a misunderstanding, so she says. But in terms of being, actually being, at any destination with her, ALL she cares about is her next meal and whether the restaurant is a decent one. No quick sandwich for her, no, she has to have a real sit-down luncheon. This, as you can imagine, is extremely trying for me, who could care less about where and when we eat. And Joe, who is already paying for the trip, counts every penny and would eat at a cafeteria as readily as I. If he could eat at all, aside from the occasional soup or puree.
The biggest damn problem with this trip, frankly, quite aside from the fact that I have NO INTEREST in going and am actively opposed to Disney World on principle, is that I feel like I will be the third person out. The one that doesn't matter, the one who doesn't get to make any decisions, as usual. And the one that will get dumped on by Joe, if there is any disagreement between Karen and me. He always takes her side, at least in my presence. And I always feel attacked when I'm with both of them. In fact, I get along just fine with each one, but really do not do well at all with both together, and I frankly worry about this and the trip most of all. I'm not good with threesomes, I admit. I prefer a one-to-one, where I don't have to divide my attention and can simply be honest about what I can and cannot do. But to deal with two others who want to do something that I cannot do...what then? Obviously the majority rules and I have to go along, as will happen time and again at Disney World, and it will exhaust and anger me, no matter how hard I try to keep my temper. Because exhaustion ALWAYS brings out the worst in me. And because they will not know, or care, that they just put me through hell, all because of the guilt trip Karen is always laying on me: Do it for Joe, it may be the last time he______. Fill in the blank.
Well, that's all well and good, but Karen has the sociability and stamina to do it all. (In fact, I'm not really sure why she is considered disabled...But that's another discussion.) I have to carefully monitor what I do, and marshall all my energies and social skills to make major forays out into the world. Half the time, I simply don't do it, even if I have paid money for something in advance. I'd do anything for Joe, within reason. But I can't be someone I am not. I have limitations, Joe's illness notwithstanding, and I still have to deal with them.
Posted by pamwagg at April 16, 2007 02:36 AM
Argh! I am exhausted and beginning to dread this trip for real just in writing about it. I wish I didn’t have to go, or that there were somewhere else they’d consider going that would be just as comfortable for Joe. I wish I knew how to arrange things in advance, by talking with Joe and Karen, so that it could be more comfortable and less stressful. I am doing it for Joe, yes, but if I end up a basket-case because I try to do everything I cannot do, how is that going to help? But I dunno what to say or what I could possibly arrange that wouldn't seem to them like I was a party pooper, so to speak. They want to celebrate all day every day for 5 days! Well, I need some time to be alone or I'll go crazy, and I need them to know and plan this into the schedule in advance. But how to tell them? How to ask for anything for myself?