I visited another orthopaedic surgeon a couple of days ago to discuss the possibility of a double leg amputation. I know now that this is a confronting sentence with which to begin a blogpost. This is not an instinctual assumption for me, I’m going by the reactions I’ve had so far to the idea. I look at that sentence quite differently to a lot of people. To me it equates to a discussion with a professional about a potential solution to an ongoing problem. To some it is a frightening, unthinkable concept and for others it is an idea that begs to be challenged.
Of the limited number of people I have spoken to, txt or tweeted with about leg amputation thus far, only a couple of people have been able to discuss the issue with me rationally without shock, judgement or pity. I want to state very firmly and emphatically that I am not in turn judging these people. I just didn’t expect the reactions I have been receiving. I don’t know what I was expecting. Perhaps that was naive of me.
It was especially unfair to expose people who I have not had the pleasure of meeting to such a confronting notion without any real context or explanation. I don’t usually do regret but I certainly wish that I hadn’t used Twitter as my first real disclosure on the subject.
As I was writing that last sentence I realised in real time that I hadn’t even told my parents or any other family let alone friends that I had the appointment booked until after I’d seen the surgeon. Strange then that I should turn to Twitter. Writing a tweet is often like writing a succinct diary entry for me. I sometimes forget that there are real people who read the random thoughts that pop into my head. That’s the best explanation I can come up with for tweeting something so personal and so confronting. I was nervous too and I was looking for comfort.
Twitter is a wonderful tool for many reasons and I have ‘met’ some truly awesome people through the social network. I realise now though, having tweeted so bluntly: ‘I have an appointment with an orthopaedic surgeon to discuss amputation of my legs. Just another normal Wednesday morning’, that this was not the way to go about sharing this information with anybody or to seek support. I don’t know what I was expecting or even what I wanted in response. I hadn’t really thought it through.
Don’t get me wrong, people have been lovely. I can’t really talk to anyone properly about this though without a lengthy explanation of my situation, so I shouldn’t have tweeted about something so complex in such a cavalier way with the expectation that people would understand.
I’m already getting a bit sick of having to justify to people that I am even considering amputation as an option. That’s my fault. I shouldn’t have brought it up with people who don’t really know me or my situation. Therein lies the problem.
As a trade off for unburdening myself and sharing what I’m going through, I feel like I have to justify my own medical decisions to people who don’t know my history to help them understand. I must also bear the burden of their reaction on top of trying to make a pragmatic decision with the best professional advice I can access.
The principle issue with sharing so much of myself with people who don’t properly know me and certainly don’t know me ‘in real life’, is that complex, three dimensional issues, when reduced to a single tweet, will almost always attract simple, two dimensional responses. The medium is the message, as McLuhan so astutely stated. The inability to really process the idea of amputation as a real option has not been exclusive to Twitter though, so this analysis is only part of the explanation of why people have reacted in such a way.
The gulf between my lived experience and the every day lives of able bodied people is immense. The gulf becomes even wider when an issue such as amputation is raised. There are so many reasons as to why amputation is a completely different consideration for me than for an able bodied person. It is a hard thing for me to consider but almost certainly not in the same way as it might be for somebody else.
My legs are attached to me and so are a part of me; that much is obvious. They have absolutely no function beyond aesthetics though. I cannot move them and I have no sensation below the knee. After years of infections, wounds, ulcers and burns, that aesthetic function is limited to how I look in jeans. I haven’t been able to wear shoes for years, so even a sartorial consideration has limited value.
The mere fact that my legs are a part of the whole of my body is, if I go ahead with the amputations, going to be difficult to get my head around. Like it or not, our bodies do feature large in our sense of self. Our identity is not exclusively defined by our physical embodiment – if it were, social networking wouldn’t really be a thing – but our bodies are extremely important in the formation of our own personal identity. That goes for people with disabilities, too. It will take a shift in my thinking to accept my body the way it is after amputation if that’s what I decide to do. I will adjust though, just as most people do when changes to their bodies occur.
The surgeon I visited saw no reason why I shouldn’t have a double leg amputation if that’s what I want. He certainly believed the advantages would far outweigh any negative considerations. I am waiting on a second opinion after which I will go back to the surgeon I saw a couple of days ago. Knowing our health system I’m going to have plenty of time to think on it.