April 18, 2007
Update on the Disney situation...
Well, we are going, it seems. The reservations have been made and the airline tickets paid for: May 22-May 27. I am resigned to it and the whole situation, cheered only by the fact that I did talk to Joe and Karen about my need for time by myself, and my inability to tolerate sitting in the sun, or shade, by the pool. So at least they know that, and agreed that if I run out of steam before they do, they will take me to the monorail and let me go back to the hotel alone, while they continue on. I think, however, that Joe's stamina may be the limiting factor in this so-called adventure, not necessarily my own, limited though it may be. He is as concerned about it as I am, while Karen, chiming in, assured us that her stamina is none too great either.
I am not sure that Joe really wanted to go, but I think he was afraid of getting tired, just as I have always been, rather than actively opposed to seeing the place. The latter, as you know, is just as important a factor for me in my distress at contemplating a trip of this kind. To be quite honest, I have capitulated enough to the government's "keep 'em cowed" machinery (that was the point of the Patriot Act, to scare us into giving up our rights, and since then everything has been done to keep us scared, while we allow Bush to continue fighting a war that only makes us enemies who hate us the more) that I also fear terrorists will attack the park while we are there...at least that is where my mental meanderings take me when I don't absolutely control them.
Already Karen is planning our meals, which is in part necessary as we have to reserve places at restaurants now, even for late May. Great! Like I want to plan now what I'll want to eat a month from now, lunch and supper? That's insane, but of course Karen won't eat in the "pedestrian" hotel dining room, no, not when there is gourmet food and specialty eats elsewhere! Oh, damnation. If Joe and I were going alone, you can bet we'd eat at the Hotel, with a few forways out, but we wouldn't concentrate on eating...wouldn't HAVE, that is. At the same time, I do have to hand it to Karen as she arranged this whole trip from beginning to end singlehandedly, no mean feat considering that we have to bring all Joe's medical equipment on board the plane, arrange handicapped seating, arrange rides and a room for three with special equipment, like a bathtub transfer chair for Joe in a handicapped bathroom and a refrigerator and dozens of other things, all in advance and all coinciding perfectly. It is all very well and good for me to say what Joe and I would do alone, but alone we'd never have gotten there, or even made such plans as Karen has managed to make by herself. So brava for her, and if I don't enjoy myself, here's hoping I am gracious about it and that Joe has the time of his life.
PS I would have discussed this with Dr O before deciding, as you can well imagine. But, alas, she was sick last week and is on vacation this week and unavailable, though I made a stab at reaching her by e-mail to no avail. So I was on my own and had little external counsel to help me make a decision. One person said, Yes, you must go, and one person said, No, you shouldn't go if it threatens your equilibrium. This kinda left me nowhere, and, well, I guess stuck with the guilt-trip that had caught me up before. So now I'm going and we'll hope if I can't swim I can at least float.
Posted by pamwagg at April 18, 2007 08:49 PM
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Hello Pam,
I've just gotten back from Boston, where I celebrated my 42nd birthday. So I know how you feel about traveling, post-illness. I went alone, and stayed at the hotel alone, and dined alone. It could get a bit prickly.
As with the others who commented, I suggest you return to your hotel to rest and re-charge your batteries. Bring a journal or your laptop so you can write, and post here if you're up to it. Do you have wireless Internet on your laptop? Maybe you could check in with your loyal blog readers for support and encouragement.
Alas, I have the opposite problem: I get anxious when I am alone for too long. I'd rather be out and about.
Yet I empathize with how you feel about travel. Having a disability, being alone, and in Boston, a place I'd never been, all contributed to my feeling a little on display, because everyone knew I was a tourist. (I have a New York accent.) So last night I ate in the hotel restaurant instead of the local pub.
Pam, if you can afford to go to Florida, I hope you do. Try not to rule anything out before you get there. You are the best person to know your limitations, so plan how to deal with any struggles before they come up.
I did something trusty: I was only in Boston the afternoon and evening of Saturday, and two full days: Sunday and Monday, and I returned today. That's because I knew I couldn't be alone, without contact with friends and family, for much longer.
That said, I do believe you will have a good time. I love to travel, and if anyone asks me whether they should consider going on a vacation, I'd say, "Go! Go!" At least once a year if you can.
Pam, have a good time and enjoy yourself.
Best wishes,
Chris
p.s. -- I'd love it if you could look at a schizophrenia website and tell me what you think, or else respond to this comment. Robin Cunningham and I now blog at www.schizoprheniaconnection.com. We're trying to promote the site and get feedback.
Thank you.
Posted by: Christina Bruni at April 24, 2007 07:12 PM
Dearest Pam,
I hope I didn't offend you by my lighthearted treatment regarding your original revelation that you were going to Disney World with Joe and Karen. It's just that your dread of the idea was so much like mine, I couldn't help but see the humor in the situation. After reading what a tremendous undertaking the planning alone has involved, I realized how incredibly fortunate Joe is to have you as his loving friend and advocate. I also know that Joe has no idea the sacrifice you are making to make him happy. Please forgive me for appearing to be so insensitive. You are one of the kindest, gentlest, most giving and loving people I know. Your character shines like burnished gold. Just like the fool I will always be, I rushed in with my witless comment without truly thinking about the actual pain you were feeling. For this, I humbly apologize, and I hope you will forgive my mischosen words.
With great love and admiration,Paula
Posted by: Paula Kirkpatrick at April 19, 2007 07:58 PM
Dear Pam,
I'm very glad that you made it clear that you absolutely need time to yourself. Make sure you get some every day. I know the feeling of needing time alone when I visit my family. A lot of times that is nap time for all of us or somewhat late at night before we all go to sleep. Karen seems perfectly able to take care of Joe for some time each day, so do not feel guilty when you withdraw. Tell them also that you need time alone to write even if you don't write anything, maybe they'll take that seriously. I would hope so, it is afterall a large part of who you are and deserves to be respected.
I think I've been to Disney World once with my father and brother years ago. Up to a point I enjoy amusement parks but maybe less so as I get older. Five days of it is a lot but you will get through it and who knows you might enjoy some of it despite yourself. I hope so.
Don't underestimate your ability to take care of yourself. You are smart and sensitive and more capable than you give yourself credit for. Don't let Joe or Karen emotionally pressure you into anything you don't want to do. That is, don't be a martyr, stand up for yourself instead. I'm sure Joe does want you to be with him but not ALL the time and Karen, well, don't take her comments too seriously and know she can take care of herself too.
You also might consider this trip good for your writing. Each day when you go off by yourself either back to the room or to a nearby restaurant be sure to write down all your impressions of the place and people. Going someplace new can stir the creative juices and give you an opportunity to see things freshly. It could be really great Pam. Writing is your spiritual practice, so take that with you for your energy back up plan. You are a writer, so write! And make no excuses about it. That will be your much needed "me" time and it will be your support. If Joe and Karen object then get angry at them, you have every right to practice your craft and they should know and respect that by now.
Posted by: Kate K. at April 18, 2007 11:54 PM
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Hello Pam,
I've just gotten back from Boston, where I celebrated my 42nd birthday. So I know how you feel about traveling, post-illness. I went alone, and stayed at the hotel alone, and dined alone. It could get a bit prickly.
As with the others who commented, I suggest you return to your hotel to rest and re-charge your batteries. Bring a journal or your laptop so you can write, and post here if you're up to it. Do you have wireless Internet on your laptop? Maybe you could check in with your loyal blog readers for support and encouragement.
Alas, I have the opposite problem: I get anxious when I am alone for too long. I'd rather be out and about.
Yet I empathize with how you feel about travel. Having a disability, being alone, and in Boston, a place I'd never been, all contributed to my feeling a little on display, because everyone knew I was a tourist. (I have a New York accent.) So last night I ate in the hotel restaurant instead of the local pub.
Pam, if you can afford to go to Florida, I hope you do. Try not to rule anything out before you get there. You are the best person to know your limitations, so plan how to deal with any struggles before they come up.
I did something trusty: I was only in Boston the afternoon and evening of Saturday, and two full days: Sunday and Monday, and I returned today. That's because I knew I couldn't be alone, without contact with friends and family, for much longer.
That said, I do believe you will have a good time. I love to travel, and if anyone asks me whether they should consider going on a vacation, I'd say, "Go! Go!" At least once a year if you can.
Pam, have a good time and enjoy yourself.
Best wishes,
Chris
p.s. -- I'd love it if you could look at a schizophrenia website and tell me what you think, or else respond to this comment. Robin Cunningham and I now blog at www.schizoprheniaconnection.com. We're trying to promote the site and get feedback.
Thank you.
Posted by: Christina Bruni at April 24, 2007 07:12 PM
Dearest Pam,
I hope I didn't offend you by my lighthearted treatment regarding your original revelation that you were going to Disney World with Joe and Karen. It's just that your dread of the idea was so much like mine, I couldn't help but see the humor in the situation. After reading what a tremendous undertaking the planning alone has involved, I realized how incredibly fortunate Joe is to have you as his loving friend and advocate. I also know that Joe has no idea the sacrifice you are making to make him happy. Please forgive me for appearing to be so insensitive. You are one of the kindest, gentlest, most giving and loving people I know. Your character shines like burnished gold. Just like the fool I will always be, I rushed in with my witless comment without truly thinking about the actual pain you were feeling. For this, I humbly apologize, and I hope you will forgive my mischosen words.
With great love and admiration,Paula
Posted by: Paula Kirkpatrick at April 19, 2007 07:58 PM
Dear Pam,
I'm very glad that you made it clear that you absolutely need time to yourself. Make sure you get some every day. I know the feeling of needing time alone when I visit my family. A lot of times that is nap time for all of us or somewhat late at night before we all go to sleep. Karen seems perfectly able to take care of Joe for some time each day, so do not feel guilty when you withdraw. Tell them also that you need time alone to write even if you don't write anything, maybe they'll take that seriously. I would hope so, it is afterall a large part of who you are and deserves to be respected.
I think I've been to Disney World once with my father and brother years ago. Up to a point I enjoy amusement parks but maybe less so as I get older. Five days of it is a lot but you will get through it and who knows you might enjoy some of it despite yourself. I hope so.
Don't underestimate your ability to take care of yourself. You are smart and sensitive and more capable than you give yourself credit for. Don't let Joe or Karen emotionally pressure you into anything you don't want to do. That is, don't be a martyr, stand up for yourself instead. I'm sure Joe does want you to be with him but not ALL the time and Karen, well, don't take her comments too seriously and know she can take care of herself too.
You also might consider this trip good for your writing. Each day when you go off by yourself either back to the room or to a nearby restaurant be sure to write down all your impressions of the place and people. Going someplace new can stir the creative juices and give you an opportunity to see things freshly. It could be really great Pam. Writing is your spiritual practice, so take that with you for your energy back up plan. You are a writer, so write! And make no excuses about it. That will be your much needed "me" time and it will be your support. If Joe and Karen object then get angry at them, you have every right to practice your craft and they should know and respect that by now.
Posted by: Kate K. at April 18, 2007 11:54 PM