I was very touched by the following e-mail. i asked Amber if i could fwd
it to u folks in the hopes u'd have ideas and suggestions for her. If you
do, please send them to Amber at: [log in to unmask]
See below ...
Bob Mauro, [log in to unmask] Amateur Radio Station KZ2G
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My DisAbility Website http://idt.net/~mauro
My Amateur Radio Website http://idt.net/~mauro/kz2g.html
My Levittown, NY Website http://idt.net/~mauro/levittwn.html
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If my IDT mail bounces, send it to [log in to unmask]
---------- Forwarded message ----------
Date: Fri, 27 Oct 2000 20:09:35 -0700
From: Amber Steenbock <[log in to unmask]>
Reply-To: Amber Steenbock <[log in to unmask]>
To: [log in to unmask]
Subject: a cornucopia of important information requests
Dear Bob,
Please don't let the subject line scare you away; I'm patient enough to wait for answers. :o) I'm Amber from Oregon. I've never written you before, and I like and respect your site (http://idt.net/~mauro/), which I found on Susie's CP resource page. (http://www.susiecphome.com/CPresourcepg.html) you seem to be a pioneer in a brave new world. :o) Questions related to the site will come later; now, I have some advice and/or information requests.
You may find it useful to know that I have quad spastic moderately severe CP, and use a power chair. The great news is that I moved out "on my own." I now live inside my small town in my own apartment! It's been almost six months. But the downside is that it's an assisted living facility, which isn't quite "working for me." Being 23 and living around 80 somethings is strange. And there's a great many rules which don't work for me, either. :o) all in all, they try, but they take away the human factor to the point where I call it assisted existing, not aloud. I've, thankfully, got a possible place to live in the spring in Portland, to a "real" apartment building with in home caregivers that don't have to run for 50 other people. And there are jobs there, unlike this little town. So the first question is, do you know anyone that I can connect with to network from Portland, Oregon? I want to find out about other options in case this one falls through, as well as fun things to do there, arts, dance, etc.
Unfortunately, that possibility won't pan out until April, so I'm hunkered down for the winter. So I'm also wanting some advice on how to deal with some mild to moderate (most days) probably non clinical, life change, things are different than you hoped or dreamed, you lived with parents who cared for your every need until the day after your 23rd birthday and you're now supposed to know how to deal with everything yourself and have it together but you don't, unprepared for adult life, or at least feel that way, semi disconnected from familial support structure because they're enjoying their newfound space and feeling out yours, but also still feel the need to advise on image, etc., not to mention bored most times out of your brain for lack of job or other "useful" use of your time, insomnia producing at times, lonely, empty ache depression. Wry grin. (not to mention the fact that everyone around you near your age is happily coupled and/or newlywed, and your arms are empty.)
See, I was unprepared and surprised by this "cloud" which appears and goes away sometimes because my former circumstances and surroundings trained me as somewhat of a "Pollyanna." Do you or have you ever dealt with this? I think that the whole deal in all of this is finding balance between a seemingly infinite number of sets of extremes. I.e. now that I don't "have" to be Pollyanna, I go somewhat overboard the other way.
I was also adopted, and wish to know medical and ethnic background information and let birth mom know I'm ok without an Oprah style reunion. Any advice?
This last question is a little hard to ask, but I'll throw it out there. I'm one of the people in my peer group who has collected mp3s. Unfortunately, this often leads one to the adult side of the Internet, where one does not usually want to end up by accident. I'm a Christian, but I'm not a prude; still most all I've seen out there makes me sick. It's all beautiful and/or skinny people. So I got curious, and decided to explore, now that I'm free to,in order to see if disabled people have their place in that world. They don't, and although I don't like to see anyone degraded by pictures or words, I do enjoy a well written romance(Maybe even erotic) story to dream by. does your "real..." Booklet have advice on how to "go solo" for Physically limited women as well? (preferably without "tools;" I'm not asking my very straight laced caregivers here to hand me anything; you never know what gets written down in reports.)
I am not part of a couple, and although I'm happy for peoples' Internet success, I've not shared it, both tries resulting in codependent freaky guys, one much older and married. (Whatever society condones, I never want to knowingly be "the other woman." And my only real life experience didn't get very physical. He felt he was doing me a favor, and didn't even tell his parents about me. I'm a virgin, and intend on staying that way until marriage, but at a time when many of my peers are getting married, it's hard not to wonder and/or plan and dream. Wry grin. Like I said, I'm a Christian, and try not to get too carried away, but I don't think asking for information is wrong, especially when it may help soothe REALLY bad emotions, like jealousy, pity, discontent, and anger. But I've never dared ask anyone about this before, so go gently. And know that I'm not looking right now. I have to figure out some of the issues mentioned at the beginning of this first. But is a real guy (Maybe even non disabled) who likes me for me as the song says, too much to ask? (And why do many people try to hook me up with other disabled people? I'm not saying that won't happen, but they do it because of the disability only. Like that's the only group of guys who would even look. That makes me very frustrated and sad.)
Descriptions of the physical side are ok as long as they're not degrading. Mostly, I don't like them to be the main focus of the story, either. But there is very little positive in this regard on the web. Disability is only mentioned as some weird fettish. That bothers me greatly. I know there is yours. But his site hasn't been updated in awhile, it seems, and there's not links to the authors on it. (my favorite on the site is "proceed with caution" by Peggy L. Elliot. Have you seen anymore by her?) Also, most of the few romances featuring disability I have seen have a male as the main character, perfect in every way besides leg and "male" movement. Where are stories featuring non dying disabled females, skinny legs and all, maybe ones with non paralyzing conditions? Are there any such bound novels you have read or written? also, is there a way that you can produce your books in electronic format for those of us for whom regular mail privacy is a huge issue, due to the inability to open envelopes or packages solo?
I'd appreciate any links or leads so that I can move beyond this quietly obsessive crusade. It's starting to worry me a little. :o)
Thanks for taking the time to read this; and for all you do. I hope this finds you well and happy. (Were you getting married soon?)
In gratitude, be well,
Amber Steenbock
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