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The changing face of BIID

I don’t know what’s happening lately. All of the BIID forums have had a long dry spell with little activity, nothing new happening, and to top it all off two of the major BIID-centric websites have closed down. Have we lost our relevance? Are we “old news” now? I remember a time when I was isolated and didn’t know that there was anyone else with this irrational and consuming desire. Now you can search the internet and find loads of stuff concerning BIID. It would seem that BIID is almost a mainstream phenomena now, as if you no longer have to search for it because you see it on the television.

So why the death in BIID website activity? Could it be that now that we know what we have and know that we’re not alone we’ve all found ways to cope and get on with our lives? Do we have a “Yeah, I have it- so what?” attitude about BIID? Or is it possible that now because more of the general public are informed, are revolted by us, causing us to hide even more than we did in the past?

I admire Chloe for her lack of shame and guilt (why should there be either to begin with?) and her willingness to come forth about BIID publicly. I’m also slightly jealous of her fame. One thing that I didn’t care for is the initial media treatment of her, and how they tried their best to make her a sideshow spectacle. She was open and honest, but perhaps the venue wasn’t optimal for such a subject. Despite that, her demeanor was impeccable- but displayed to a hostile audience for their lurid pleasure.

I consider myself to be open about my own experiences with BIID. I’ve told all my family, close friends, and have even confided in my church pastors. It’s funny that I’ve never gotten the responses that I expected- nobody has yet called me “lower than dirt”. I was nervous when I told them, actually didn’t want to say anything to them about it whatsoever, but in return for my confession to them I more or less received acknowledgement, acceptance, and their own revelations of deep personal issues. It seems that everyone has some sort of baggage to conceal. To those people I confided in, I felt it necessary to reveal myself in order to have an honest friendship- it seems that it worked.

I haven’t gotten any public exposure other than an ABC news article on the web. I was also approached by National Geographic and the Anderson Cooper show- but Chloe won out. I’m an introvert by nature, so I probably don’t present the same “presence” as Chloe and the production professionals are trained to detect that shortcoming. I really would like to be there to give some public support for Chloe instead of her bearing the whole weight of being our public spokesperson. Beside that- I bet she’d be a great deal of fun at cocktail hour- I’d love to meet her face to face!

I have to give kudos to Dr. First, Chloe, and Doug Fabrizio at NPR for the recent radio show they broadcasted about BIID. Stellar! Finally a combination of medical authority and personal experiences were presented, and I was blown away. I participated in Dr. First’s second study, and so much of what he said applied to me personally. Chloe hit a lot of personal chords as well. All I can say is that this is the first production of any kind where I identified so fully. The show was absolutely amazing.

But I still wonder about all the lack of activity on the web. I wondered if all that needed to be said on the subject of BIID was said, and now it’s a dead issue. Well, I still have it, I still cope with it, I’m still frustrated by it, and I don’t see that my life on Earth will ever be without it. The radio program refreshed my hope for resolution, and it was good to hear that the issue isn’t completely dead.

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5 Responses to The changing face of BIID

  1. Chloe says:

    My own lack of activity on the web is easy to explain. Like Mark said, I got famous! Er, wait Mark! Didn’t you mean notorious? I quote from my dictionary: “Well known on account of some thing not generally approved of or admired”. Yes, notorious…

    I apologise for depriving you of notoriety, Mark. I have no idea why I was chosen to be the sideshow spectacle. Perhaps I look funny?

    Yes, my lack of website activity is directly due to notoriety. There is a constant stream of private messages from complete strangers. This is a good thing. I can individually proselytize BIID as the most significant advance of civilisation since sliced bread. Ah, there I go being a really bad public spokesperson again! Naughty Chloe! This is exactly why we need notorious others. Did I say that out loud? I meant “famous” of course. Yes yes yes, you too can be famous!

    I really did make mistakes. Umm… No, they were learning experiences. That’s right, “learning experiences”. I was very naive actually. There’s this thing called editing. Context can be completely edited out of what you say so that it can appear to mean something quite different from intended. People add stuff and put it in quotation marks as if was something you said. Part of the reason NPR worked so well is that it went out live; no editing!

    I believe even the sideshow freak stuff is good in the long term. My notoriety allows me to turn down 95% of media requests and move up the respectability ladder.

    My nervousness about BIID is totally gone. I received enough local coverage that people come up to me in grocery stores to talk about BIID. NOBODY is negative about it in real life!

    I still have plenty to write about BIID. It is constantly providing me with new experiences and perspectives. Very recently I got to the point of my number of unanswered e-mails and facebook messages decreasing rather than increasing. This allows me more time. I’ll be back.

    I am much looking forward to cocktail hour with Mark. Groupies welcome as long as they have baggage to reveal…

  2. Trixie says:

    Well Mark, I don’t have a clue about what happened to our website, but I hope things get better soon! I take a look at it everyday since I subscribed and still there is nothing new…

    Anyway, don’t worry. This website is made by people and as long as there are some in need of a conversation, I believe the topics will return to the usual rate. Also, there are still – and there will be always – something to say about BIID. Everyday there are new people discovering themselves towards this and we, the ‘old ones’, still have our issues to cope with BIID.

    So we need each other. Until people suffer from this and until they aren’t able to get totally healed, they will need some support.

  3. Mark (and Chloe as well),

    As a chair bound paraplegic with a self inflicted Incomplete SCI resulting from the improper use of a K100 BMW, I find this BIID conversation rather amusing. Even though I express to others, these days, that my chair is most likely the best thing that ever happened to me, I in no way could imagine and would never suggest that anyone should voluntarily gimp, cripple, maim, or in any other way intentionally disable themselves by loping off a leg, arm, finger, toe, or other appendage that is in good working order. Hey, if you choose a wheelchair as your preferred mode of locomotion, who am I to say you shouldn’t. Honestly I do consider myself advantaged in many ways. For example, I thoroughly enjoy a bit of exhilaration from the sudden acceleration each time I exit a sidewalk on a nicely paved “handicapped” ramp down to street level. And yes, I recognize the envy in the eyes of those that catch a glimpse of me as I navigate a gnarly slop in a shopping center parking lot, breeze blowing my hair on a nice sunny day as I speed past the pedal trodding hordes. But at the end of the slop?…..Really…..who wouldn’t rather spring to their feet and take an empty chair back to the top for another go.
    Admittedly, and as witnessed by those I meet, my attitude may be a bit unorthodox. I approach my condition as a realist. I consider myself fortunate to be able to deal with the inconvenience with a light heart. If I think of my situation as the result of “the odds,” I can honestly say, when I consider my friends, family, and even my wider circle of acquaintance, I am relieved that it was my number that came up. I believe it would be hard to bare witness to the pain and suffering it would bring. It is the odd case of “better me than you” and I remind others that may slip with some sentiment of regret or sympathy on my behalf; worse things happen to better people, everyday. And at times I have pointed out to some that only know of me what they gleam from brief social or conversational exchange, I may have rightfully earned and even deserve my plight. Never be too quick to judge. Even the most positive, uplifting soul in a wheelchair may have been a real bastard before earning his wheels.
    I do not lament the loss of my ability to walk. Nearing middle age when it happened and having vigorously pursued challenges that allowed me to actually put to good use my physical faculty prior, I can easily accept that the warranty expired, but not before I got my money’s worth. With this I can also say that I am rather indifferent with regard to the appendages that had once served as support and a principle source of locomotion. I can even imagine a time in the future, as I grow older and my strength begins to falter, that I will want to have my legs removed in order to maintain the level of activity I presently enjoy. They are, after all, heavy, cumbersome, and oft times unpredictable. I can easily say the same sorts of things about my mind. Nonetheless, I would not consider a lobotomy, not so long as there is a possibility for improvement. In contrast my legs presently serve little by way of utility, regardless their aesthetic appeal.
    In the end, any way you cut it, the overwhelming majority of us in chairs would rather it be a weekender hobby where we all get together to do some wicked mall-lot slops or take a flight or two of stairs for our homemade jack-ass videos. As for willingly removing or impairing workable parts….I might, unsympathetically interject, such a consideration could only be a symptom of over privilege. On a more PC note and in line with my education and modern sensibility as an academic, I can accept BIID as a psychological condition and can sincerely hope that successful therapy is in the works to help alleviate the suffering of those afflicted with the condition. Of course I suspect this line of defense may be out of reach for some in which case I might suggest a more practical approach. Possibly, something along the lines of an extended period of strict confinement to a wheelchair, via straps or chemically induced Saddle Block, with the modern convenience of a inner urethral catheter and diaper to regulate and manage bodily functions, might help reconnect these individuals with their estranged body parts. If not, a lobotomy may be the only solution.
    In concluding, I do understand that BIID has recently received acclaim as a legitimate and serious condition to which I can only reply…..Seriously? Such notions, regardless their social acceptance, are a slap in the face to persons not only challenged with but excelling beyond the reach of their full bodied piers. That such is acceptable is a call to us all to take a good look and possibly reconsider what we consider Society.

    Thanks for giving me the opportunity to comment. I’m sure I’ve said enough to perk the ears of a few in this corner of the blogosphere. I hope it will generate some thoughtful commentary. Also, I would like to invite anyone interested, to join me, in the very near future, at my blog “Wheelfull Daze,” coming soon to, http://www.WheelChairCrashDummy.com

    Thanks again

    • Mark says:

      My apologies for this overdue response…

      Yes, indeed- wheelchairs can be a blast! They’re not the horrible death sentence that most able-bodied people think they are. Additionally, they’re not always convenient- in fact, they’re an outright hassle sometimes, and the human form isn’t designed to be in a seated position all day. And as you say, the majority of full-time wheelchair users would rather not be so encumbered despite the occasional “wheee” moments.

      Ablation of limbs or severance of nerves is not something that we with BIID take lightly- we know that this is a physically compromising event that generally occurs after trauma or disease grants no other option. We understand how much pain an accident victim experiences- and perhaps this is the root cause of PWDs offense and insult. It’s a life interrupted, presented with new rules, and sometimes the life is destroyed- and then you see people who for some reason “need” a disability.

      The fact is that we are disabled. Research so far has detected deficits in the superior parietal lobule, supposedly an area where the body image is in the brain. Whether this comes about from a neurotransmitter insufficiency during infancy, clandestine governmental experiments with LSD in the local water supply, or demonic influences during gestation no one can say- but it is there nonetheless. The fact is this: for some reason, we don’t “own” or correctly recognize those parts of our own bodies. Call it what you may- sick, weird, obscene, ungrateful, or just downright “kinky”, we ourselves recognize it as irrational and confounding- and intend no insult to the physically disabled. We have it in varying degrees- some of us cope better than others, some of us can’t function on a daily basis from the obsessive need to get rid of something that we can’t mentally say belongs to us.

      You suggest that we reconsider society and what is or is not acceptable. I would suggest that we reconsider what we call medicine to include things beyond what is recognized as the physical body alone. There has to be some sort of harmony between body and mind before there is wholeness. Whether you are aware of this is unknown to me: there is a growing number of us who have had elective amputations for these disowned body parts- and they get on with their lives free of obsession, are clear minded, and perform unhindered in society.

      Honestly though- “Possibly, something along the lines of an extended period of strict confinement to a wheelchair, via straps or chemically induced Saddle Block, with the modern convenience of a inner urethral catheter and diaper to regulate and manage bodily functions, might help reconnect these individuals with their estranged body parts.” Didn’t they barrage homosexuals with pornography in an attempt to “cure” them not too long ago? We see how well that worked out! There’s a matter of identity that comes along with BIID, it’s a core issue that’s inescapable. From your comment, I think we’re even-up regarding face slaps- but I’d prefer that we don’t escalate along those lines.

      We who suffer from BIID do want help. Psychiatrists and psychologists don’t have a clue about it. Surgeons won’t touch us. We’re diagnostically orphaned. There should be a vetting process- after psychological avenues are exhausted, only then should surgical options be considered. Amputations should not be performed the same as a blepharoplasty or appendectomy, of course. We’re left out in the cold as to what to do with BIID and where to get help for it. Our wheelchair use is a form of mitigation for our anxiety- it allows us to get around, and it allows us to get our “overly present” legs off our minds, reducing the intrusion of the obsession we can’t escape. None of us are having fun with this other than the occasional “wheee” moments on those downslopes.

      I hope this response has helped open some understanding about BIID and reduced the “face slap” that you perceive. Feel free to read some of the articles in our archive at: https://ahiruzone.com/?page_id=1200

  4. Chloe says:

    CancheQuebrado, thank you for your eloquent, intelligent and interesting commentary. I have to admit it came as quite a surprise to me when I came to the part about BIID being a slap in the face. Seriously?

    Perhaps I can elucidate my surprise by quoting a comment regarding BIID recently made on my facebook page by a new friend with both paraplegia and a doctorate in psychology:
    “That is good, for those of us who like ourselves as we are will support you. Those of us who dislike ourselves and blame our disabilities for it will find you offensive. You know who I am.”

    I have experienced the truth of this generalisation literally hundreds of times. Yet what you say suggests that you have complete acceptance of your disability without a trace of anger. For someone such as this to find BIID in any way offensive is an extraordinarily rare phenomenon, and therefore of great interest.

    I shall also say that people with disabilities who have negative opinions of BIID almost always base their ideas on misconceptions. Approximately 75-80% of those who engage me in dialog quickly change their minds with quite little explanation. An example from yesterday is from a woman on a public forum who stated in her first comment “this woman bugs me”. After a single comment from me she said “Thank you for your reply, you don’t bug me”.

    I constantly invite people with disabilities to explain why they are offended, insulted, slapped in the face, etc. I am truly longing to hear something real, that can be the basis of a serious discussion. I am perfectly willing to consider changing my speech or my behaviour if I am actually doing anything which causes offense. Too often I merely end up correcting misconceptions, and this has become boring for me.

    Thus I extend my invitation to you and am honestly waiting with excitement to hear a cogent explanation as to why BIID could be construed as a slap in the face to someone who is at peace with their disabilities.

    Thank you for the discourse.