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Home / Thoughts / Sean's Thoughts / Discussing BIID with Dr. Chris Ryan

Discussing BIID with Dr. Chris Ryan

Written by Sean on Thursday, December 18, 2008

I was recently given opportunity to meet up with Dr. Ryan and one of his colleagues, Dr. Tarra Shaw.  We met to discuss Body Integrity Identity Disorder.  Dr. Ryan recently published a most interesting article, in which one of the point he makes is that elective amputation surgery might be appropriate in some cases of BIID.

Chris focused solely on amputation in his paper, which I admit annoyed me.  I did email him (which eventually led to our meeting), and asked why he’d done that. His response made a lot of sense, and in view of that response, I could not hold his choice against him.  He had explained himself by saying there’s basically no agreement about just exactly what *is* BIID, that he’d never worked with anyone who had BIID for something other than a Desire for amputation, and finally that there were (in his opinion) different ethical issues between a request for amputation and a request for spinal cord transection.

During subsequent emails, he admitted to me that his own incomprehension of the need to be paraplegic might be skewing his thinking but that the more he considered it, the more he could see relationship..  I think that our meeting helped with cementing the perception of relationship between amputee BIID and non-amputee BIID.

I arrived 20 minutes late to our meeting due to public transport scheduling (for which I must again apologise).  I made my way to his department withing a large hospital.  Getting to the main door of the hospital was fun, as it is about 75m from the street, and a good 30m are on a steep, *steep*, STEEP downhill.  I thought "Going down is gonna be easy, but going back up might be a bitch!".  Made my way through the hospital, and finally found the right spot.  I announced myself with the receptionist.

I waited barely a minute before Chris came out.  We shook hands.  He appeared warm and interested and quite laid-back.  First impressions were good (although one might argue that first impressions were done and done with through email!).  He introduced me to his colleague, Dr. Tarra Shaw, who was going to attend the meeting and take notes and ask further questions.  Dr. Shaw was also quite warm, although very quiet at first.  By the end of the meeting, I think she had taken something like 53,400 pages of notes.  Well, maybe not *quite* that much, but certainly over a dozen pages.

The main object of the meeting was for Chris Ryan to get to talk to someone who has BIID, but who needs paraplegia rather than an amputation.  I was interested that he pronounced the word "b-double-i-d", rather than "biid".  I kept to my way of saying it, not sure if he switched or not, I didn’t really notice.  He gave me a bit of background as to how he started working with people who have BIID, which was somewhat of a fluke.

I was asked many questions.  Most of them, I had already entertained at some point or another, and it was therefore fairly easy for me to answer.  At the same time, I was careful not to give out a "canned" answer.  Sometimes my thoughts about something change, and it’s important to keep track of that.  But, usual questions about when it started, what it’s like, when I discovered I wasn’t the only one, would I get rid of it if I could, etc.  Some quite rethorical questions, obviously, and some more direct questions.  Some questions about my history, other questions about emotions, and feelings. Talked a bit about the relationship between depression and BIID. Talked about the effect of medications on both BIID and depression (one point worth mentionning is that somewhere in the literature it is said that medications appear to be helping with BIID, whereas I have found that some medication help with feeling less depressed, but that does not actually impact the BIID itself, it merely makes it more bearable).  We discussed psychotherapy and pharmacotherapy.  I was asked about my childhood, my father, my mother.  I was asked about my sex life.  I was asked about many, many things.

One of the topics covered was the issue of "scans".  Dr. Ryan asked if I had been scanned specifically for BIID.  I said that I hadn’t, but that I had a brain MRI taken a couple years ago for something else and I’d sent copies to Dr. McGeoch in San Diego.  Chris asked if I would be willing to get tested, and I said I’d love to, unfortunately there’s no way for me to afford going to the US for these tests.  He spoke about the possibility of going to his hospital for such tests, which would certainly be more feasible financially for me, although still a bit of a stretch.

Another topic was about my perception of my legs.  I pointed out that I was pretty sure that my legs felt "normal", that the feelings in my legs was pretty much like every one else’s feeling, but that what’s right for everyone is just wrong for me.  He sought clarification, asked if my legs feel like my arms, which they do.  Talked about body image, would I be happy as an amputee?  I wouldn’t be.  It’s not about having to use a wheelchair, or having a mobility impairment.  It really is about having the body of a paraplegic.

We also spoke about the very limited about of academic publication about BIID, and most particularly the dearth of information about non-amputation BIID.  I pointed out that it creates a bit of a vicious circle - the more publication focuses only on amputation, the less the need for paraplegia, blindness, deafness, etc is likely to be included.  He agreed that more about these non-amputee Desires need to be included.  We discussed the possibility of doing a series of case studies.  I would be quite excited to see this happen.  I said I could deliver them 12 other individuals, so if/when this comes off the ground, people, don’t make of me a liar! :)

In the end, I was with them for nearly 90 minutes, which is a long time for two busy doctors in a large hospital.  From my perspective, it flew by and I was quite happy with the result.  I hope both Dr. Ryan and Dr. Shaw were half as happy with it as I was.  I look forward to being in touch with them some more.

Oh, and yes, that hill going back to the street *was* a challenge.  Yikes… But it was all worth it!

Tags: Amputee, BIID, Blindness, Body Integrity Identity Disorder, Brain, Case Studies, Cure, Deafness, Depression, Medication, Paralysis, Paraplegia, Pharmacotherapy, Psychotherapy, Surgery, Wheelchair

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