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Pretending
Written by Tom on Monday, December 8, 2008
It is not possible to pretend being an LBE amputee. The amputation I would like to have is through the wrist. Of course, this is not possible to simulate. The closest I can get to it is by making my hand as useless as possible and with as little sensitivity as possible. I have tried many methods to achieve this, and finally settled for a compromise. It involves closing my fist, thumb inside, and bandaging the whole thing quite tightly. The bandage must also go a little up the wrist so that there can be no wrist movement. Then I cover the whole thing with a "stump" sock. However, this still looks more or less like a closed fist. I found this could be made less obvious by letting a couple of finger "stumps" point out at the end of it. So I let my little finger and my major finger point out, but bent and bandaged so that they look like two short finger stumps. When asked, I tell people that I have an underdeveloped, malformed hand and that I have to wear a glove to protect it due to the fact that there isn’t any sensitivity in it.
Sure, it looks weird. It took me some time to get used to it. It really makes me look like a man with a crippled, useless left hand. And, of course, I cannot use this hand to grab or hold anything. All I can do is use my forearm to hold things against my body if I need to. And this feels good. I find relief in doing this, in living with this disability. I feel so much more like myself. Over the years, I have learned to do things with one hand and I have become quite skilled at it. This is not a heavy handicap, not the kind of handicap that would prevent one from doing a number of things, although it does put some limitations on what I can do in some situations. The image people get from it is quite powerful. They often see me as lacking some essential part of my body. And they are often very kind to me. In general, they can see that I manage very well without help but I can sometimes feel that they refrain themselves from helping… or from watching me doing things with my one hand. Occasionally, I indulge into accepting some help. A few weeks ago I bought some food in a supermarket in a town I was visiting. The guy at the checkout didn’t ask if I needed a hand to pack my things, but he just put the items in a bag for me (which they don’t normally do here, in France), and he then readily handed the bag over to me with a nice smile. In this situation, I could have told him "that’s OK, I’ll manage, don’t worry, but thanks anyway", but for once, I chose not to say anything and to enjoy the guy’s kindness that was so nicely offered.
On another occasion, I was in a bar, quite late at night, and the place was rather dimly lit. I had also had quite a few drinks, and I experienced some difficulty to find change in my wallet. If I had been able bodied, the bar tender would just have waited for me to pay him and would perhaps have shown some discontentment. Instead, he just kindly offered to help and to find the change for me. Quite similarly, last Saturday, I bought cigarettes in Paris. The girl behind the counter threw the change back to me on the counter, as they usually do in Paris because there is always line ups in tobacco outlets and they need to be fast and efficient. Then she realised that it wouldn’t be possible for me to swipe the coins with one hand into my other hand, as people normally do, and that it was going to take me some doing to pick all that change. So she did it for me and transferred the money into my right hand while I was holding my opened wallet against my side with my bad hand. It was then easy for me to drop it all in the wallet and walk away. That was a nice little experience.
Yes, people are often kind to me, not out of pity but because I am outgoing and not shy even if I have a rather shocking disability. I’m not afraid of their curiosity. I don’t try any longer to hide my bad hand. On my first outings, many years ago, I felt quite shy to appear with my disability, and ashamed as well. So I used to hide my bad hand in my pocket. And as a result, when I had to pull it out in some situations like when paying for something, I could see people were sometimes shocked. Some even startled quite violently. Now, I tend to let them see for themselves before I have to interact with them so that they have time to decide how to handle the situation. Consequently, I don’t hide my bad hand, instead I hold it in such a way that it is obvious to people that there is something wrong with that hand and that I’m not ashamed of it.
It took me countless years to feel at ease with pretending in public. I wanted to do it, I even felt an urge to do it, but I also felt very self conscious due to the fact that, in a way, I was fooling people, appearing as a disabled man when I am really able bodied. It took me a long time to accept that if I felt I was disabled it was ok to live the way I wanted to live. I am sincere and honest in what I am doing. Surely, I’m sorry for myself to be the way I am, and I still have to fight a sense of guilt as well as some negative judgements. But I have made good progress.
The consequence of this is that I pretend more and more, and I’m getting more and more frustrated. I feel so good when I pretend that "normal life" becomes really tasteless and meaningless. Also, having to go to other places to do my pretending (so that there is no risk of coming across someone I know) led me to develop a double life, and this is not satisfactory. Rather, it is a source of frustration.
So, why not move to a new place and start a new life as a one handed? Why not pretend full time? Well, pretending is just pretending. It is not the real thing. I can pretend for a few hours or for a few days at a time, but sooner or later, my "real life" will catch up. If I pretend at home and do what I have to do at home using only one hand, that’s ok. But if I want to go to pick my mail, I’ll have to open my front door and step out on the street, where all the neighbourhood can see me. That’s how "real life" catches up. And what I want is just the opposite. I don’t want to hide. I want to have a social life as a person with only one hand. I want to go to the local supermarket, to have a chat with my neighbour, to do normal things as a guy that happens to have only one hand.
I have often contemplated the idea of amputating my hand altogether. I even took steps towards doing it a couple of times, organising what was needed to sever the hand from my arm (axe, or, on the second occasion, the sharp edge of a heavy concrete slab that covered the sewage pit in my former house: all I had to do was to set my hand underneath it and withdraw the peg that held it open). I prepared what was needed to stop the bleeding so that I wouldn’t bleed to death before I could call for help, I set my cell phone close to me so that all I would have to do was to press the dial button to call for rescue, etc. But I couldn’t get myself to voluntarily injure myself. Those experiences left me dangling and shivering with awe and frustration. And the approach seems to me quite naive, looking back at it.
I have read of people using dry ice to freeze their unwanted limb to a point where amputation would be the only cure. This seems less difficult to achieve than to actually sever the limb with an axe, a chain saw or a railway track. And this would certainly freeze a hand more quickly and efficiently than a leg.
I also contemplated the idea of paying a surgeon in some exotic country to do the amputation. But again, there are lots of uncertainties and risks about that kind of method.
The point is that it is not a question of method. The point is that I feel that I shouldn’t want to be disabled, that it is not normal and that I should seek help and treatment.
Help and treatment I have sought for the past 10 years. But this will have to be another post. And it will be a bitter one.
All in all, at the age of 44 I am still hanging in between, and I’m not really living. One or two hands? One hand at times, two hands at times. Double life. And the obligation to manage the unthinkable desire of becoming a one handed guy as well as to manage a life as an able bodied, normal, straightforward guy.
Bonjour tristesse.
November 4th, 2008
Tags: Amputation, Pretending, Therapy, Treatment
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2 Comments
Tom, I agree with Ada. You write with a lot of depth and complexity (I mean that in a good way). I’ll just pick out a couple of the things that caught my attention.
About letting other people help us when we don’t actually need it: I think that sometimes we do people a service by allowing this. It helps them feel good about themselves.
About self injury. I have only made a completely deliberate attempt at this once, when I was nine years old. I was naive enough to think that what I wanted to happen was automatically what was going to happen. Consequently, despite the adrenaline rush, it only took me a few seconds to go for it. Such things do in fact deserve a huge amount of consideration. There is no going back.
Thank you once again, Tom, for stimulating a lot of thought.
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1 On 8 December, 2008, Ada said:
Tom
I really enjoy your posts, and find they leave me often too overwhelmed to comment. I can relate to so much of what you share. And here you’ve done it again, but I’m going to have a go :)
Thank you for sharing the interactions you experienced. I find those moments the best, as they are as close to how we can truly feel as a person with a disability, as the grocery clerk does not know you are pretending.
Right, you can’t pretend LBE, but it is good you have found a simulation that gives you at least a little relief.
What a shame that missing a hand could be seen as a “shocking disability” especially if the person is interactive and productive.
RE: pretending and double life. Yeah, it’s hard. And tomorrow will mark only 2 weeks for me.I guess it doesn’t ever get easier.Two days ago I realized how careful I need to be pretending around my home, but today, the BIID took over and I went out in broad daylight.
It will be bad if I’m found out, but that was the lesser of two evils today when I needed to use my chair.
I look forward to more from you Tom:)