I've been working to do more things in the world. I am to give an advocacy training in Montgomery (two hours away) Feb. 27. An enemy of my independence reported this to my nursing agency and asked if nurses were allowed to go out with me. This caused quite a reaction, and now my nursing agency and case manager for this waiver are saying a nurse cannot go to Montgomery, and going to college is stretching it because the waiver is only for "in-home care."
"We're sorry. My hands are tied. liability. too far away from medical services. medical. medical. nurses. medical. we're sorry. I admire what you're doing but there are some things we can't do."
"We really understand you want to be more independent. We admire that. But we can't help you be independent. We only provide nurses."
Cannot go out, going to college is stretching it? That is a lie of course, that is NOT what the waiver I agreed to said in the settlement with the judge last year. So I've called my lawyers. My lawyers are pursuing this aggressively and I'm coordinating everything personally. Advocacy is what I'm good at, and when I get pissed off, the system can be rocked.
The waiver does not have a restrictive homebound rule in it. But facts don't matter, what's important is to control me and keep me from causing them the slightest difficulty. "i know you want to be independent. but you have a lot. you have us nurses. you have to be taken care of. and i hate you don't appreciate us."
This is being done to scare me. It won't work, in fact, it just makes me topple their beloved status quo faster. It's a huge mess, and I'm having panic attacks for the first time in years (I'd gotten over that through therapy like 8 years ago).
I've got a back up plan to get to my gig in Montgomery (mom). And I won't stop until I've got the independence I need. I'm now working on a push to get a PCA program started (this is one of the few states to entirely lack a full-time PCA program.)
I'm very upset. My fears to push on my independence were very justified. I knew I'd be punished and now here it is. Yes, I feel the pain, they've succeeded there.
The fear created to keep people with disabilities from being included, being independent, participating as full human beings and being sexual is right on topic here. It's hardcore bigotry/lack of support that keeps me and many people with disabilities from being included in life. It's widespread, you just don't hear about it much because fear works, and people will go along and be good little sheep and avoid the hellish backlash from trying for more. You'll find few radicals out there who will buck the status quo and bear the wrath.
Thanks for letting me post this, there are few places I could write this without fear of misunderstanding or further reprisals.
I turn 22 on Monday. Unfortunately the fight is just beginning.
Re: Nick update: I've now been punished w/ restrictive homebound rule
February 20 2004, 8:18 AM
Nick,
You know my heart is with you! You got to move! I wish you'd move up here to Micigan and you and my son could live together and share a driver to take you wherever you wanted to go.
Today I told my nurse I was going out with friends tomorrow night for my birthday and she can stay here (first time I've done this, I've usually only gone out on weekends when no nurse is here). Telling her this was one of the most difficult, scary things I've ever done, and took a lot of bravery. She was stunned, but said she didn't know if she would do it, she'd either be liable for the time I am gone, or lose her overtime hours. I'll go anyhow, and face the wrath.
In other news, I think I may've sorta asked Audrey out kinda. I wrote her and said I wanted to meet her, when was a good time, and asked if she's free this weekend. That took bravery too. I hope she replies. We really click and communicate well the few times I've seen her. She's great. I like her a lot. I want to date her.
CONGRATULATIONS! I know you don't want your nurses to lose their pay - but they have been inflexible about their hours with you. Now they will know you mean business. I know you don't want to hurt them - but instead of them looking at your desire for some flexibility in your hours as a problem to them - they should look at it as their benefit. If you demand more flexible hours - that gives them some room to demand more flexibility too.
I know you don't want to piss them off - but you are entitled to freedom - to a life. CARRY ON!
I don't know if she thought it was a date. ambigious. but felt good.
we talked for over an hour, talked about a wide variety of things, her family, the campus, her schedule, my schedule, my activism, politics and how we dont like the president, activities we could do, and more. relaxed, friendly, comfortable.
i want to see her again and she wanted to see me again so we'll go out this weekend (if I can get help) or meet again like this for lunch next wednesday....but as a friend or i dunno. all ambigious. I don't know if she has the slightest interest in me in that way whatsoever. i like her a lot and have a lot of feelings but was holding all that back.
i hope i can find someone to drive for this weekend. she said she'd drive my van but she can't get to me since she lacks a car. i need to go get her.
talking to her was really good, but there was this lump in my throat and I kept thinking how can I date with this restrictive situation
if it doesnt work this weekend then i have other, more creative ideas.
Nick- you're a fighter and that's good. You know what you want and you work hard to get it. I give you credit.
If you would like some inspiration or motivation, listen to what my friend does. This may overwhelm you cause it is almost unbelievable.. He imagines a type of Hot Rod in his mind, then goes and finds a frame, body, builds a motor, some supercharged, and rebuilds the automatic transmission (he has rebuilt over 300 to date !), rebuild rear ends, brakes, every nut and bolt,etc.. co-ordinates a lot of stuff on the telephone. All his family and friends, including me, help him out. At one point, he was too sick to stand up, he crawled out to the garage on his hands and knees to do something. Here is a man who was ready to give up and die, and now he turns out these beautiful cars and has a shelf full of trophies. A simple compliment brings a smile to his face ravaged by diabetes and depression. Yet, he feels bad for anyone who is sick and knows there are many people out there worse off than he, but what drives him on?
Today, he needs another kidney bad, spend 12 hours a week on dialysis and is very sick at times, but, on a good day, can't wait to ride in his 35 Ford again with a new big block Chevy he put together...another trophy winning car. He is now getting ready to wax it. His mind focused and fingers talented, he builds the best car he can in spite of staggering conditions.
To date, he has built 10 gorgeous megabuck classic street rods and you really got to give him credit..he knows every inch of these cars, but he has never SEEN or DRIVEN any of them cause he is...................... TOTALLY BLIND!
So I didn't hear back on Wednesday night's email or an email Friday so I wrote tonight and asked her to meet for lunch this Friday. Someone said I was rushing it, is that true? I hope not. I'm scared and people are rattling my confidence even more.
Well you might be pushing it a bit by suggesting lunch. If she hasn't been responding to your emails you have to figure out whether she is just not the email type or whether she needs more time. This is all real exciting to you--it may not be quite as exciting to her ( if she has had other guys interested in her) --or she may even be scared by her interest in you.
She wrote back. Turns out she didn't write before because she was unable to get out of bed with the flu all week. The flu has been raging through campus, my political science prof had flu and canceled class today.
She was apologizing profusely. She said "We'll have to get together next week."
As far as her "interest in you," it's totally unknown if she has any interest in me. I'm not sure how she views me at all. We've talked about going out various places, but it could be in a friend way, it's all ambigious. I've gotten no definitive signals yet.
I'm really tense but I oughta be used to that by now.
She's been sick-give her a break! Call her next week. Or send her a SILLY get well card via email. There are a bunch of online card companies --bluemountain is one of them. Let her make the next move.
Yeah, I won't ask to meet again til next week. Don't worry, I've been going with the - say nothing to girls ever - method and always err on the side of timidity.
Tomorrow I meet Audrey at lunch. Still ambigious.
I'll keep you updated.
Nick
Nick (no login)
Re: First date?
March 17 2004, 6:54 PM
....met Audrey today.... it was so awesome. I love the closeness, the deep conversations, how we were honest, how we see the world so similarly and have similar goals and interests. i love how comfortable it is around her, i can open up and it's ok, she's not judging me. i can say deep things to her i can't say to other people on campus. she was opening up to me and i was opening up to her. she talked about how she feels isolated and i talked about how i feel isolated. she is isolated because she is sensitive, kinda quiet/shy, insightful, serious, in a college of insensitive, uncurious and light people. very much like me. we relate really well. that's why i was drawn to her, i felt a connection. now she is seeing how much in common there is. she says thank you or returns all my compliments. i was smiling at her and she was smiling at me.
she even wants to come do advocacy w/ me. similar interests
she's amazing. the more i get to know her, the more i like her.
she said she was uncomfortable with my differences at first but now really sees me and i'm just the same as anyone else.
i showed her about the ventilator and she'll drive the van and we'll go out with her friends this weekend or next.
there's still total ambigiuity here ...
we'll be close friends I think but I don't know if she'd at all be comfortable with me wanting her. i like her so much.... she is soo beautiful. her green blouse made it hard to concentrate... :)
given time who knows?
it felt sooo good, the closeness. we said bye, and she just lightly touched my arm goodbye for 1 millisecond. that rocked!!!!
i was very happy after talking to her. i was on cloud 9 for a few hours but now am back down after being in the cage a while.
still, i'm excited about the connection i felt. i'll wait and am eager to see her again.
Doesn't sound like you need any tips. Sounds like you are right on track. You wil probably have to make the first sexual move---but I doubt she's ready for that yet.
> Doesn't sound like you need any tips. Sounds
> like you are right on track. You wil probably
> have to make the first sexual move---but I
> doubt she's ready for that yet.
Yeah, I doubt she's ready for that too. But I have no idea. I wish I knew what the hell I was doing, haha. I don't know how she sees me, if me asking to hold her hand would be ok or not, offputting or what. It might, it might not. Would it? I really want to touch her hand. I don't know if asking if it'd be ok to date her would be acceptable. I really want to date her. I'm holding back. For now. Maybe she is thinking these same things and holding back. I figure I'll wait and see, blindly go in and let the moment guide me. Any ideas on what's acceptable and what's not at this point?
I'm really eager to just talk to her again. I went over to the dorms tonight to hang out; I was surrounded by girls but I didn't look at them the same way -- all I could think about was her. I've got Audrey looping in my head. It seems I'm falling for her hard. I'm in serious condition! lol
But I'm apt to err on the side of caution. The danger is that I'd do something like repeat my younger brother's mistake; he hung out with a girl he loved for 2 years and never had the guts to tell her he liked her and now it's too late, she is graduating. So I'm hoping I avoid that but I'm also scared of offending her or pushing her away.
Thanks for listening; I hope it's ok that I keep talking about this here.
Holding hands doesn't make it a date or make it sexual. I've held hands with women friends, with guys I just like. For you its different Iknow - but it may not be for her and it is a way to test the waters. I see no problem with asking her to hold hands.
Your situation is not the norm and I would go slow. You still have no idea how she feels about you. Have you discussed sexual rights at all? If you have a discussion about that - and try to keep it at the advocacy level - that will give her the opportunity to make it personal. But if she doesn't - all is not lost - she just might not be ready yet.
Sure Nick, it is OK to talk about most anything here,
Susan
just talking to her is a major high and confidence boost... because it feels like, hey i'm talking to this awesome girl, that must mean i'm worthy of talking to an awesome girl.
so just holding her hand would mean a lot to me. but i don't know what i'll do. hopefully i'll know what to say at the appropriate time. please keep pulling for me.
cant wait to see her wednesday. i'll keep you updated.
It's Wednesday, Audrey day. We met again and talked. It was great to talk to her but I'm getting no signals of dating interest whatsoever from her. Nothing. No feeling. She is very perceptive and insightful, she picks up on deep truths about how I see the world, so with the compliments she has to at least suspect my interest, right? I wish that once someone would view me as datable.
I'm not frustrated with her, she rocks. She is great. I could write pages on how awesome she is.
I'm frustrated with my situation. I'm frustrated no one so far in my community has viewed me as fully human and having desire and no one's ever wanted me. I'm frustrated there's nothing I can do to relieve all the sexual pain and tension.
My frustration is just building and getting worse and worse and worse and worse and worse and worse.
I know you think that Audrey's lack of sexual interest in you is simply because you have a disability - but is she perhaps focused on school and not dating anyone?
I have met plenty of men I got along with well and thought there was some sexual chemistry there- only to discover none. Or at least in one case - they did not act upon it until we graduated.
Have you told her you plan to leave to go elsewhere when you graduate? Could she think that you are going and she is not going to invest her heart in you?
Could she not know you have sexual interest in her - or that you are capable of sexual interest and so she holds back her own?
I know it seems like an incredibly long time you have been dating Audrey and you think things should moved forward - but it really hasn't been that long- maybe you just need to be patient.
I know it is hard and frustrating. You have been wanting someone for a long time - but Audrey is evidently not in the same rush as you are.
Keep being who you are and eventually you wil know one way or the other.
> is she perhaps focused on school and not
> dating anyone?
This is possible.
> Have you told her you plan to leave to
> go elsewhere when you graduate?
no, I haven't told her.
> Could she not know you have sexual interest in
> her - or that you are capable of sexual interest
> and so she holds back her own?
This is a very real possibility. This is what I fear. Part of me thinks if women knew I was sexual I wouldn't be in so much hell right now. Audrey has never been told, so how can she know?
On the other hand, maybe I have told her, she might know already - there have been hints, compliments -- I've told her how I like her mind, like how she sees the world, like how she understands, like her blouse, I've told her how I like seeing her, want to see her more, and maybe she knows, just doesn't want me. Possible I'm holding back too much though. I just don't want to push her and she run away.
Am I dating her? Not really. I'd give my right arm to be dating though.
I've noticed whenever she talks about going out with me, she talks about getting a bunch of people together and going somewhere -- unambigiously non-dates. Not a good sign, I know. She'll be gone home (two hours east, in Niceville, Florida) all this weekend and all of upcoming spring break (second week of April).
If I got good signals from her it'd be easier but I'm scared if I let out the feelings or ask to hold hands, she'll be uncomfortable and withdraw. I don't want to make her uncomfortable.
Agh...
Yeah I have bad physical tension/pain of the actual sexual organs, but it feels like most of my tension, really bad tension that feels like a tightness and weight on my chest, is emotionally-based, from me not being able to express any of this massive amount of feeling to any female EVER and it be ok. I'm bottled up on a lot of levels, and it hurts. It's only getting worse. I wish I could let it out, but I won't if it'll hurt anyone.
I know I've only been meeting Audrey a short time.
But the pain is destroying me, and it's nothing to do with her really; it's my own issue, she is not responsible, I am.
Who knows what she thinks of me? She could only think of me as friend because I'm not overt enough with her. She could just want to be friends, who knows?
Should I be more blunt with her? I'd never want to hurt her.
But my desire is there either way, burning me up inside. And I have to find a way to deal with it.
It hurts. I can't adequately describe it, but a lot of times it makes me feel sick.
Now I have staff that won't restrict me. But I need help to use that freedom.
I'll keep working on it.
Meanwhile, I talked my conservative Congressman into cosponsoring MiCASSA. I keep working very hard to help.
1. Be patient, agonize and wait. Eventually Audrey wil give you a sign.
2. Take the risk of telling her she turns you on, and risk that that makes her feel really uncomfortable and doesn't want to see you again.
There are two times to do that with different risks.
1. Do it right before she leaves - and hope that either she responds in the affirmative or just thinks about it - and if it turns her off - you wouldn't be seeing her for awhile anyway.
2. Wait until after she has been away. She might really miss you. Telling her you really missed her is a good lead in to telling someone you care about them and they turn you on.
i had these two dreams this week. one was after i read your last audrey related post, i slept and dreamt that it was wednesday again and i was talking to her like always. like always we talk about deep stuff, happiness, etc. Like always we talk about each others' happiness / unhappiness and i say "i want so much. all the beauty, all of life...." in real life, i stopped there. but in the dream I continued, "I want so much. all the beauty, all of life, I want you...." and then I woke up really fast, ah!!! noooooo.....
No idea how she would respond to that. But now I picture her recoiling, "uh, wha?"
Other dream I was sitting up, able to move and I was able to put my arm around a woman's shoulders (unknown woman) and say my true feelings. It felt really good. really good. I felt in control of myself and my reality again, instead of just feeling trapped by other forces. I could really live, it rocked. I woke up smiling.
Nick - this is good! You are facing your fears head-on. Keep having that dream and when the time is right - I bet the dream changes!
This thread s getting really really long. When you write next can you please start a new thread. I am going to lock this one. That means people can read it, but not respoond to it.
So if you want to call the new thread the same thing - that is OK - Just call it part 2.
Susan
Current Topic - Nick update: I've now been punished w/ restrictive homebound rule
