Monthly Archives: March 2015

Changing Shape

From the moment my leg left my body, it became medical waste. It’s not even that anymore, I’m sure. It’s… What is it? My leg existed in space and time as part of me and what I understood myself to be and it is no longer there. Amputation has made me think about who I really am. It has been at once a challenging and life affirming experience. The amputation of my leg continues to affect my identity and how I think about myself.

I am an amputee now. There’s a word for it and everything. I have resisted joining any kind of support group, organisation, or society whose members are amputees and define themselves as such. I’ve never been much of a joiner and I’ve never been one for consolation. I’m sure these aspects of my personality make my life harder than it needs to be. I believe life should be hard. That is both a blessing and a curse. I never say, or even dare think, that life isn’t fair. Nobody ever promised it would be.

After my surgery, I felt something I wasn’t prepared for; I was immediately self-conscious. In the beginning, this was debilitating. I didn’t want to see many people post-op when I was in hospital. There were only a select few who I allowed into my room to begin with. I had a room to myself. When I got out of hospital, I found it hard to muster up the courage to go out anywhere. I stayed at my dad’s place for a few weeks and the idea of going home was entirely daunting because I knew I would have to go out and be seen by people and they would see that I only have one leg. I was perplexed as to why I should care. After all, how people see me had never bothered me before.

That I would feel weird and self-conscious about my stump is, even to me, absurd. People have always stared at me. They have always noticed my wheelchair. They have always said really stupid stuff, both well-meaning and out of cruelty. I was so used to that kind of attention, I had unconsciously trained myself to block out the vast majority of it. When I joined the world again after my surgery, for a long while I could not get past the idea that everyone was staring at me. So many people stare at me when I’m out and about and I notice them now because I’m looking for it. I realised after a while though, that I probably wasn’t getting much more attention than I’ve always had, it was just that I felt uncomfortable with my new identity as an amputee and I was projecting that onto the people around me who had always looked.

Before my amputation, I was scared all the time. I couldn’t do anything much because I didn’t have the energy for it or I was too sick or I was waiting to get sick and I was scared. I’m still trying to get used to the idea I might not have to be hooked up to life saving drugs in the near future, that I might not be a patient again for a while. The thing that I thought was going to kill me is gone. I am no longer chronically ill. That sentence, that thought, has just this second dawned on me. It’s all taking a lot to process. There’s so much involved. The good and the bad consequences of my amputation do not occur to me all at once and I still can’t answer simply when people ask me if I’m glad I did it.

I’m struggling to know what to do with my time now. I got used to being a patient quickly; mind you, I’d had a lot of experience in that area already. I’m still an occasional patient but it’s really not impacting on my life in a significant way. I’ve realised only recently how small my life is. Actually, I think I’ve been aware of the walls closing in for a long while but it matters more now because I have time on my hands that used to be taken up with being a patient and with being scared.

I think I can probably be more than a patient who has disabilities and chronic illness now. I’m tentatively testing the boundaries of what I’m capable of again. I used to do that a lot. It was how I lived my life. I achieved things I didn’t imagine I’d be capable of because I was happy to accept that life is hard and that if there’s a wall I had to find a way over or around it. The thought that I might be able to get back up over that wall again after so long is at once terrifying and exhilarating.


Standing Out

Following a transfer from Wellington to Hawkes Bay Hospital, I moved back from city to town nearly six years ago now. Though I grew up here, it was a real culture shock. I still don’t feel I fit this place at all. I never knew what it felt like to fit in until I left home, so I guess it’s no big surprise to me I feel the same now I’m back.

I spent my weekend in Wellington. Despite feeling I was home from the moment my parents dropped me off at my hostel for my first year of university, I have a complicated relationship with the place now. Visiting Wellington in the years since I’ve been away, I always felt like I was coming home. My heart broke when I left. I was completely head over heels for all of it and I didn’t know how I was going to carry on outside of the capital’s boundaries. I felt my identity was tied inextricably with the place and I fitted in. Now though, I’ve got kind of used to standing out in a smaller town and I’ve begun to value myself as a person outside of the norm. I’m very comfortable with who I am this time around. I think Wellington helped me a great deal in that regard.  I finally felt I was going home when I got on the plane bound for Napier at the end of my short holiday.

I stand out not only because of my wheelchair but also because I tend to style myself in an androgynous way. I say style, I mean jeans and t-shirt with the addition, on a cold day, of a sweatshirt or jersey. There are plenty of women who dress similarly but I also wear my hair very short and don’t wear jewellery or makeup. I look like a certain kind of lesbian, which is fine and good because I am a certain kind of lesbian. I’m a lesbian who likes to be comfortable. I tell you, guy’s clothes are a revelation. They are so much more comfortable and, regardless of what the label says, you can wash them however you damn well please and everything will be fine.*

In all seriousness, I don’t feel I have much of a choice in standing out. I’ve tried wearing more feminine clothing, I’ve tried wearing make-up, I’ve tried wearing jewellery. I don’t feel like me when I’m wearing all of that stuff. I feel like I’m playing dress up. I’m pretty sure if I tried wearing a dress or skirt now, I would feel as if I were wearing drag. I like being a woman but I also like expressing my masculine side. Actually, it’s not about ‘like’. It’s a choice between being comfortable in my own skin or not.

It goes without saying, I can do precisely nothing about standing out because of my disability. Most of the time that doesn’t bother me, though I would say I have an easier time accepting my sexuality than my disability and a lot of that is down to how I choose to present myself and how much choice I have in the matter.

My disability and my sexuality and my gender are all amplified to the extreme now I’m no longer living in Wellington. I could be a bit anonymous in the city, though if I wanted to stand out, I could. I spent a while in my 20s wearing sort of post-punk garb; leather jacket, facial piercings and spiky hair that was alternately, purple and black, blue, green, and bright copper. I loved how I looked. I’ve always been a bit vain, despite my obvious physical disabilities.  Conversely, if I felt like it, I could blend into the crowd. ‘The crowd’ in cities tends to be so diverse now, it doesn’t matter if you look different because there are a whole lot of other people who look different as well and when all these different people are thrown together, nobody stands out too much.  Unless you are really trying to and there’s plenty of scope for that.

Growing up outside of a city, it’s very easy to feel your differences are exclusive to you, that you are the only one. It can be a very lonely feeling. I feel it still, now I’m back to where I started.  That feeling of isolation is tempered though with the knowledge there are others out there like me and no matter how different I am to those around me, if I speak long enough and listen intently enough to anyone, we might just find common ground.  The discovery that we’re not as different as we might have imagined is a powerful inroad to understanding and acceptance of oneself and others.

The biggest surprise for me following my weekend away is that while I enjoyed the trip, I really looked forward to coming home. One of the best things about moving back to my home town has been, though I feel and look different to most of the people around me, I’ve learnt to enjoy that difference. Standing out is a valuable gift that I might not have recognised if I’d stayed where I was.

*I take no responsibility for the outcome if you follow this advice. You should never blindly follow the advice of a blogger.