transabled.org

maybe another time, my english is too poor to express my feelings in a correct way.

Is because of that (and a little bit of shy) why I remain silent many times. For now, to me is enough reading copies of my feelings.

@Lulu, Even if English is not your first language, it is important that your participate. Give it a try at least. Participation from people outside of the English speaking world is important to show it’s not just a “Rich Western English speaking condition”.

I agree, Dr First will understand if English is not your first language and will greatly appreciate your attempts to be a part of this study. As Sean has said this study is highly important as it ensures not only you, but other BIID sufferers have a higher chance of receiving assistance from the medical world.

Thanks for this post Sean. I’ve been hesitant in part because I am private.

You have spoken very highly of Dr. First, and it is important. Very important to participate.

I will go outside MY comfort zone and contact Dr. First for the greater good.

I hope others will too!

@Ada, thank you. Very much so.

I have now emailed Dr. First for the first time, and I aim to provide my viewpoint for the study.

@Nobody, thank you. It is good.

I just want to endorse what Sean says about Michael. I plucked up courage and although it wasn\’t easy I was glad I did. Michael made every effort to help me feel more comfortable and I felt better for it afterwards.

@lulu – my mothertongue isn’t english either, BUT: dr. first did realy his best in understanding me and giving me e great feeling. the feeling i am worh being an important part of these studies and made clear, that if not everyone who suffers from biid (the paraplegia form) takes part there is no way at all…besides, i am invited in two weeks to another study-interview in zurich / switzerland. if some of you guys live in switzerland too, pls contact me! sean will give you my email :-)!

atleast 18 years of age? LAAAAME! what’s up with that? i’m as crazy as any of you (no offense lol) so why am i not allowed to participate?

@Tora, because by law you aren’t allowed to make your own decisions to participate in medical studies. Might be lame, but can’t get around the law, sorry.

I participated in this study and Dr. First was very easy to talk to. He made me totally at ease, it wasn’t a scary experience at all.

@sean so…. according to the law, i’m not responsible enough to drink, smoke, vote, run for public office, order things through the tv, or make my own decisions… but i AM responsible enough to be allowed to drive a large piece of metal down the road at 60 mph? what?

@Tora, don’t be mad at me. I don’t make the laws. If you want to change things, go see your legislator.

@Tora. Don’t expect laws to make sense. That’s not the way things work. Laws are not made up by sensible people.

@Lane, yes, there is good learning for you about yourself from the process. It is a dialogue, and not just one way. Not for me anyway.

You can find his earlier study on biid-info.org http://bit.ly/7RHdl

I just e-mailed Dr First. I’m so nervous now!

@Beth, thank you. No need to be nervous, it’ll go well :)

@Lane. After the formal interview, Dr. First asked me if I had any questions. I had a LOT. He spent another hour with me on what turned out to be a psychotherapy session. It was extremely useful for me.

Hi, new here. Or not precisely new, but new commenter, been lurking since last summer. (Sean, I exchanged a couple e-mails with you then, but from a different address)

It took me a couple days to get up the nerve to do it, but I just e-mailed the Dr.

@Kat thanks for coming out and getting in touch with Michael. It *is* appreciated.

First time here too after much lurking. I grasped the nettle and e-mailed Dr First and have an interview set up for May. I have been trying to supress BIID for more years than I can remember. Finally time to come out to this “safe” community of friends anyway. It’s a bit scary!!!!

@James welcome aboard. Thanks for delurking. It can be a bit scary, but we don’t bite ;)

I have e-mailed Dr. First today hoping my almost 50 year experience with my odd feelings will do some good.

I spoke to him in december, he is very open, also for unusual BIID varieties, so do not worry

@Bobby, thank you. I appreciate your becoming involved. This is important work :)

I’ve been reading transabled.org for quite a while now. I know everyone says this but it was amazing to discover that other people feel the way I’ve always felt. (Or similarly at least – what I need is a kind of paraplegia that would leave me able to walk a few steps with difficulty, leaning on furniture or using crutches, but having to use a wheelchair most of the time. I imagine this would mean a fairly low level spinal cord injury, perhaps incomplete.)

I’ve been tempted to ask to write for the site, but I wouldn’t feel right doing so until I’ve come out to my partner, and I’m not sure when I’ll be ready for that. But I will email Dr First and ask whether I can help.

@Ann Thanks for coming out to us, at least, and for your willingness to talk to Dr. First :)

God knows I want to do my part. Just emailed the good doctor.

For those of you that have already talked to him, what sort of questions did he ask? What kind of questions did you ask him?

I’ve just got off the phone with Dr First. I can’t quite believe that I managed to talk so openly with someone about all this! He’s really nice, he asked some stuff about how old I am and my relationship status etc. Then he asked about what disability I need, then a bit about what pretending I’ve done/do. He finished off with a few questions related to general mental health and asked me if I had any questions for him.

Apparently I was interview no. 31 and he needs 50 so anyone who hasn’t contacted him yet, he’s really not scary and doesn’t even ask your name!

well done, Beth! Only 19 to go then. There must be 19 more people out there willing to speak to him, surely.

@cath *headdesk* i’m willing!!! argh! why can’t i be olderrrrrrrrr???? no fair.

@Beth. Good job. Are you glad you spoke to him? I told you it wasn’t such a scary thing to do :)

As for finding another 19, with up to 1,500 readers a day, one would think 1% of you lot would go ahead and do it, but, looks like not :(

@Tora Sorry :(

Yes I’m glad I spoke to him. He asked me lots of questions that helped me to understand myself better. He asked if I needed sensation loss or strength loss more that the other, I’ve never thought about that before and I still think I need both equally, in a package. It was an interesting question though, and one of many that I found interesting and useful.

@Tora, I’m sorry too that you can’t participate. Will you be 18 soon? Dr First is expecting it to take a few more months or maybe a year to find the rest of the participants.

I have just had a call from dr. First. OMG, it was a long call. I think he had to change some questions to match my version of BIID.
I am glad I wrote him and agreed with the interview. It was good, he is a clever man. He had a lot of questions and he also let me say what I wanted to tell him. We even busrt out laughing severa times during the interview.
If any of you still hesitates or feels unsure whether to undergo the telephone interview with him (The call to my country must have cost him a fortune!) do not wait, do not fear, just send him an e-mai arrange the call for a suitable part of the day (it takes more than hour) and help him with his research. He deserves our help.

I too had my interview with Dr. First. It was GREAT! He is still looking for another 10 participants or so. If you have not yet contacted him, PLEASE, PLEASE, PLEASE contact him! He is very easy to speak with, and our conversation was very comfortable.

He was particularly interested in a couple things I shared, and was very reassuring about other things I felt uncomfortable sharing.

It was great experience, and I’m so glad I participated!!

I was nervous, and had no reason to be. If anyone is hesitant, please seriously do your part.

@Bobby, thanks for letting us know it went well :)

@Ada, I know you were so nervous you were nearly out of your skin! I’m very happy to hear it went well :)

Everybody else! You have no reason to fear from him. Participate!

I just spoke with Dr first myself this morning.
He’s a very interesting guy.
I think we spoke for almost 2hours.
I was enlighting and the time passed very quickly.
With all these phone calls world wide he must have to have a huge research budget.

I e-mailed Dr. First, but sadly, having the amputee flavor of BIID, I’m not what he was looking for in his study. I suppose I have a taste of how the rest of you feel about being excluded from the studies that have been conducted to date. I am very excited to see what comes of it as I’m a firm believer that what’s good for one of us is good for all of us. I’m so glad to be a part of this community, even though until now, I’ve not been very vocal at all.

Hi Bryan,

the “amputee type” of a person with BIID is invited to take part in research at the University of California, San Diego, USA. Just contact Dr Paul McGeoch or David Brang (see http://cbc.ucsd.edu/ramalab.html).

Another project just about to start right now takes place in Zurich, Switzerland. For this, just contact Dr Peter Brugger (http://www.neuroscience.ethz.ch/research/neural_basis/brugger_p).

Another team works in Frankfurt, Germany; they are also looking for participants. Contact: Dr Aglaja Stirn (http://www.klinik.uni-frankfurt.de/zpsy/psychosomatik/pages/Mitarbeiter/stirn.htm).

Maybe there will be a questionnaire based project from Lübeck, Germany, too, but at the moment they only have questionnaires in German.

By the way, I think the team in Frankfurt is also interested in the paralysis and other types of BIID.

I can give you more information if you like, just write me an e-mail.

Greetings!
Phil

@Bryan, I’m not sure how fully Dr. First explained why he wasn’t speaking to those of us needing to be amputees. This particular study is actually a follow-up study to his earlier research that focused only on people who needed to be amputees. The specific goal here is to “prove” that regardless of what physical impairment we need, we all have BIID.

So I did my bit for BIID and spoke with Dr. First.

The anonymous telephone interview lasted an hour and a half, or two and a half hours – I can’t remember. Either way, I was prepared to stick with it for as long as it took.

As I understand it, Doc’s reasons for doing the study include comparing data from the previous study (focusing on people who need an amputation) with data from this study (focusing on people who need some kind of disability other than amputation).

My reasons to participate in the study include helping to get the number of subjects up to around 50 (the size of the previous study) and also to express my particular feelings to a professional “in the field” – one who has heard such stories before, and does not require an introduction to the phenomenon from the ground up in order to grasp it.

I wanted to express my own viewpoint, but it seemed like there was not a lot of room for that. Doc had many questions, which were posed to either all participants in both studies or to all participants in this study. Questions that did not apply to my situation were either yes or no answers. Answers where I had more to say, in order to supply background or clarification or finer distinctions, were always welcome. There were demographic questions, questions about my motivations regarding our “thing”, and questions to get a sense of my psychological background.

I don’t know whether Doc reads this site, but doing the study caused me to do more thinking about my feelings than I have done in a long time. So, here’s what I came up with.

The study questions seemed to boil down my answers to “what type of disability do I want to acquire”. In the case of a spinal cord injury, “what level do I want to have”. As we well know, it’s much more complicated than that. More importantly, the vocabulary is all wrong. I tried to emphasize that I don’t “want” any disability at all. What I do want is the higher level of awareness and wakefulness and sociability that I experience while using a wheelchair or hearing aids or whatever. If the only realistic route to living all the time on that higher plane of existence is through a disabled body, then I’ll take it.

In the same way, the study spoke of “pretending” to have a disability. A better word would be simulating. An even more accurate description would be, “satisfying the need to discover first-hand what it’s like to live with a disability.” The word “pretending” is just layman’s shorthand; the actual activity is better named “moving myself to a better place”.

These shortcomings of the study are probably unavoidable at this stage. The relevant research needs to do the same coming to terms with BIID that we have done: using the introductory “beginner’s” terminology, realizing the limitations of those terms, and then digging deeper to begin using more accurately descriptive words. I hope that later work will carry into the literature the realities that we have found about how we talk about the phenomenon. For example, “pretending” does not at all describe what we do from the subjective (inside) viewpoint; it describes only what is seen from an objective (outside) viewpoint.

As a child and young adult, I *needed* to experience in some way various disabilities in order to discover what about them interested me so much. Different simulations produced different levels of effect. Sitting in my wheelchair certainly had the most powerful effect. The idea of using a chair was sexually arousing. The preparations around going out in my chair were sexually arousing, But – actually spending non-trivial time in the chair in public changed the arousal in a profound way. The sexual aspect was completely eclipsed as I experienced a non-sexual, all-encompassing arousal of the senses, awareness and peace of mind. I felt that a walking life was basically a sleep-walking life; somehow not real. A wheeling life however, was somehow more alive and more awake, with more room to grow and more range of everything to feel and experience.

As an adult without access to that higher plane, my thoughts about going there are more frequent and intense when my general anxiety level is higher. When my worry in general goes down, then I think less about moving myself to that better place.

Now. I may not have this thing as severely as some people here, and I won’t presume to self-diagnose even a mild case. Even so, I see something of myself in most of you, in pretty much everything I read here. So, I identify as a member of this community – willing or not.

Doc did ask that I encourage others to participate. Doing is very much like the rest of what we do with this condition: you just won’t feel right until yuo try it.

“spending non-trivial time in the chair in public changed the arousal in a profound way. The sexual aspect was completely eclipsed as I experienced a non-sexual, all-encompassing arousal of the senses, awareness and peace of mind. I felt that a walking life was basically a sleep-walking life; somehow not real.”
WELL SAID! My experience exactly.

@Nobody. Thank you for all those insightful observations. I totally agree that the interview can catalyse some pretty deep introspection. My problem with it now, more than a year later, is that I would answer quite a few questions rather differently. I’ve completely ditched repression, in favor of treatment. A longitudinal study would be very interesting, to follow up on people in a few years.

You are shit minded people who should die out and not shit on society. Or shot.

I considered not publishing @Sir’s comment. But thought it was such a well built argument, congently put together, that it was worth sharing it… Ohh, did I mention I have a good dose of sarcasm? :D

As it gets on toward the full moon phase, a few of them will wander away from the asylum and rattle around here without their usual supervision. Even if they had access to weapons, I doubt they could shoot straight. His argument, noted by Sean, is flawless and stands solidly on the use of compelling and well chosen expletives.

/Art

Thank you for publishing that, Sean. I truly needed a good laugh out loud, and it made my day. It’s brilliant!

Still my favorite one though, is that we are infested with demons. I don’t remember where that comment is.

@Sir: Your argument is solid, however, I’ve had an MRI done and it turned up no evidence of shit inside my cranium. And I don’t often take shits on people or society unless they ask me too (no one’s asked me yet, sadly).

However, I would not have allowed this post if I was Sean, despite the comedic value. Despite being trained in multiple martial arts, I do not condone violence in any shape or form… so I’ll show restraint and not threaten you with a shooting. However, you are a perfect subject for an experiment I want to conduct…

See, there’s this theory that BIID is a malfunction of the right super parietal lobe. What I’m going to do is subdue you, knock you out and create a lesion in the right super parietal lobe…. in theory, this should cause BIID. When you wake up, part of your body will feel completely wrong to you. Now, don’t worry, I’ll provide you with plenty of dangerous objects that you can use to get rid of it. We’ve had a lifetime to learn coping strategies, how long do you think you’ll last?