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Plan C
Written by Chloe on Tuesday, May 5, 2009
So far, Plan A ("accident") and Plan B ("deliberate self injury attempt") have both been rather disappointing. Time to give serious consideration to Plan C ("medical intervention").
Well, I hear you say, there are many of us who want a spinal transection but it’s just not a reality at this time. Yes, I know, but I have a plan; a plan to which I think I am particularly well suited.
Switching from a crutch to a KAFO at work gave me the impetus I needed to start thinking seriously about this. Sometimes it is hard to know ahead of time how well a particular method of treating BIID is going to work. It turns out that using a single KAFO brings me substantially more psychological benefit than one might anticipate. No, it’s not as good as using a wheelchair, but let me try to estimate some numbers here:
Let’s set wheelchair use at 100%, in terms of the benefit one gets from presenting as a PWD. I would rate a single crutch at 20%, and a single KAFO at 70%. I expect these numbers would be wildly different for different people. I would be interested to know how others might rate comparative treatment efficacy of different presentation modes. I apologise to those of you with BIID manifestations other than paraplegia. I tend to get rather focussed on that.
Okay, now let’s see how this all fits in with the benefit of actual paralysis. I shall set T11 complete paraplegia at 100%, because there’s nothing more that could make things any better. So, where would full time wheelchair use, with no actual paralysis, fit in with this scale? I can only make guesses here, but I think for me that would be around 20%. Again, I would be very interested to know how others would rate wheelchair use versus actual paraplegia, in terms of BIID treatment efficacy. Do others rate it higher or lower than I do? I have no idea.
Those of you who are on the ball mathwise will have already calculated that on this scale single crutch use has an efficacy of 4%; and single KAFO use has an efficacy of 14%.
What about suboptimal levels of actual paralysis? Interesting question; and I can actually put another point on the graph here. The amount of paresis in my left thigh is completely trivial. It prevents me from doing some skiing techniques, but it’s hardly noticeable in daily life. Sure, there is a greater amount of sensory loss, but the overall nerve damage is certainly less than 1% of the way towards paraplegia. However… if I had to choose between the amount of nerve damage that I have versus using a crutch full time, I would definitely choose the nerve damage. In other words the efficacy of the tiny amount of nerve damage that I have is more than 4%. Let’s narrow it down a bit further. It is a lot less than the efficacy of single KAFO use at 14%. I would estimate the current nerve damage efficacy at 6%. Notice that this is a massively non linear relationship, as is also the case for presentation modes.
This is another thing that is likely to vary quite a bit between different people. If you are an "all or nothing, need it all, need it now" kind of person, the deviation from linearity is likely to be in the opposite direction from myself. I am the kind of person who benefits quite a lot from partial solutions over the course of time.
Here’s the problem: the furthest I can go in terms of presentation is to be a full time wheeler. But that’s still only a 20% solution. Not good enough! In the long term I have no option other than to acquire a LOT more paralysis than I already have. But how effective would be a degree of paralysis that falls short of complete paraplegia?
If we plug in the numbers we can calculate that the degree of actual paralysis corresponding to the need for a left KAFO should be 70% effective in treating my BIID. To me that’s a great deal better than 20%, at least in the medium term.
So, what is that paralysis? A left femoral nerve transection should do the job. It won’t cause complete paralysis of the leg, but my understanding is that it would be enough so as require a left KAFO. It actually gets a little better than this. If we throw in full time wheeling on top of the femoral nerve transection I should be able to get another 6%. So I have a 76% solution to my BIID problem! That’s not bad.
The next question is whether it is attainable. The issue of femoral nerve transection has been discussed here before: Daydreams, and femoral nerve questioning. But maybe things have changed a bit in the last couple of years.
There is now talk of being able to get an elective amputation through accepted medical channels in the not too distant future. Those of us with paraplegic manifestation may not be so lucky since paraplegia is considered more disabling. But what if I am asking for a femoral nerve transection? I don’t see how it could be reasonably asserted that it would be significantly more disabling than a leg amputation. Is this not a reasonable plan? Rational? Realistic? Effective?
The great advantage here is that the amount of nerve damage from a femoral nerve transection is much less than 50% of the way towards complete paraplegia. So from the surgeon’s point of view it should be relatively minimal. However, for my own psychological benefit it gets me 70% of the way there. It is this huge discrepancy in the linearity of intervention versus benefit that makes this a reasonable compromise for all parties.
The next step is to get my ducks in a row. There’s the issue of the real life experience. I just started wearing a left KAFO almost full time. Alright I’m still skiing, but there are adaptive ways around that issue. Then there’s my partner. Well, she’s already okayed me on the full paraplegia, so no problem.
Seems like I should be discussing the issue with my psychotherapist at this point. Presumably I would eventually need a letter from him stating that I am not utterly insane, but blah blah blah. He is already aware that I have been deliberately skiing off cliffs.
To me, the serious consideration of Plan C in no way implies that I have given up on Plan A and Plan B. I shall still be skiing with intent next season.
Moreover, I have seen people ski on one leg, with the other leg dangling, and forearm crutches modified with outrigger skis. I’m guessing it might also be possible to use a monoski with one paralysed leg. I’m not sure whether the "feet together" or the "one foot in front of the other" style would work best. At any rate a successful outcome to this version of Plan C should still allow me to pursue Plan A and Plan B. I don’t believe that a femoral nerve transection would prevent me from skiing off a cliff.
Yeah, lots of plans. It’s a question of not putting all my eggs in one basket. Gotta love eggs!
Tags: Amputation, BIID, Crutch, Femoral Nerve, KAFO, Nerve Damage, Paralysis, Paraplegia, Paresis, Psychotherapist, PWD, Spinal Transection, Wheelchair
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10 Comments
This is a really interesting post. It’s started me thinking about what is the minimum I would need to keep my BIID feelings at bay. I think that essentialy anything that allowed me to use a wheelchair legitimately for 90% of the time would be great for me.
I agree with you though Chloe in that there certainly would be other inbetween options that would be better for me than being AB but not really quite enough. I’ll be giving this more thought and trying to work out what might be more realistic to achieve than a spinal injury but nearly as satisfying.
3 On 5 May, 2009, Phil said:
I tend to think that I prefer enjoying my 100 % able-bodiedness to 70 % impairment. I think I would feel stuck somewhere in between - disabled, but not in my real body. And it would just further fuel my BIID desire, while with all four limbs I have times where I am nearly BIID free and can enjoy my body to the fullest, nothing reminds me of it then, and I can do everything that my body allows easily and without additional planning and effor.
Maybe I don’t want to make a compromise? Or I just still hope for a way without surgery. I have had times where I could live with BIID and my body and enjoy life a lot. I would prefer to find out how to extend these periods.
(By the way, my desire is to get two very short thigh stumps. I have often thought about having “only” one leg off or both below knee or something else. Somebody who had the same desire for DAK amputation and managed to get rid of one leg said that it was not bad, but he still needed the other off. So in my interpretation he had an impairment both of his body and of his mind. I think I’d rather have an impairment only of one of these, soul or body.)
I don’t know if that makes sense, and it is just what I think right now…
I think I am with you, Phil, on this one. Nothing but the whole deal comes even close.
5 On 5 May, 2009, Sean said:
@Phil, yeah, makes loads of sense. Agree with @Cath, need it all or nougth
I’m curious about you “all or nothingers”. How does wheeling fit in with that? For me it is a 20% partial solution, which is certainly better than nothing but clearly falls short of all. I would have thought if one was all or nothing, one would not want to wheel at all until one was actually paraplegic (or whatever it is for you).
Enjoyed your writing Chloe-
Can understand where you’re coming from totally- but, personally, I think I’m more allied with Phil’s perspective. I have thought about ‘alternatives’ to DAK amputation, but although I reckon I’d cope if they happened accidentally, I can’t think of any that would really help my BIID. Although a wheelchair might sometimes be a necessity if I achieved my ‘goal’, it isn’t a big part of the plan, and use of one doesn’t alleviate my BIID. A single amputation- though undoubtedly a means to an end- would probably make me feel worse, as would a below knee. It just doesn’t ‘fit’ the mindset….
I wish I *could* come up with a suitable compromise- it would make things a lot more realistic!!
I saw my psychotherapist this evening. I felt that I needed to bring up Plan C. I was nervous about it. After discussing the issue in a general way, I asked him straight out “If I found a willing surgeon, would you be prepared to write a letter stating that I am a suitable candidate for left femoral nerve transection?” Without hesitating, he said yes! “YES”, he said!
I’m sure he saw the emotion in my face. I thanked him and gave him a big hug. Then he went on to say that I should have autonomy over my own body, and that he would support me for *anything* that I needed. Wow! WOW!!! Friggin awesome!
Yes, I know that this doesn’t actually get me anywhere, but it fuels HOPE.
I am one happy girl tonight. :o)
10 On 30 May, 2009, Sean said:
@Chloe, that’s good. I think it helps being validated. It’s a bit like the parking permit and the prescription for the chair. I also think it’s important to have done enough work on yourself to understand yourself well enough and be sure such a thing would be the right action for you. I’m happy for you.
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1 On 5 May, 2009, Stumpy said:
I can speak from personal experience. Acquiring paralysis lower than my goal has helped immensely! I still plan on going all the way but the urge to do so is nowhere near as strong now that I have paralysis.
I need AFOs for anything more than walking short distances. I can still walk barefoot without braces, which is something I\’d like (need) to change. Just knowing that I need braces is a great feeling! I still feel the need to not be able to walk or even stand unaided, REQUIRING my chair when I\’m unbraced but I KNOW where I am now is better than being AB.