It is 2004, going on to 2005. I’m thinking about ‘identity’, and thinking about the person who in 2000 wrote:
To me, sexuality has been so important for my journey to enlightenment. That’s not to assume that enlightenment is an end thing, it’s a continual process. It’s a continual reassertion of the self, or reawakening of the self, and I believe it has a lot to do for me with sexuality. When your body becomes like an enemy, if you distrust or dislike your body, which often happens to people with disabilities, you often lose your sense of self. You have to reclaim your body. Sexuality is so important for this. It’s like a reawakening for your self, and pleasuring your body can be part of that reclamation.
She was confident, self-assured and sexually active.
I read it now and I think ‘My God, this is a totally different person’. Which brings me to the question: ‘Where is she now?’
In 1996 I started a postgraduate course in Social Work. By 1999, I had to drop out due to my Multiple Sclerosis. I was unable to write, my sight was getting worse and my fatigue was increasing. I did not feel able to complete my degree in Social Work. I spent time feeling frustrated because I knew I wanted to help people with MS negotiating their way through sexuality. I was aware of the lack of information and taboo surrounding sexuality for young people with disabilities. For the next two years I wrote openly and honestly about sexuality and the importance of it. This was a dreamlike period when I would write, publish and be paid. I had a nasty break-up with someone I considered to be a close friend. Other intimate relations started to turn sour on me, so much so, I gave up sex altogether. Then some people close to me started to disempower me by stating that I would never have an intimate relationship again. What used to be a very powerful libido diminished to nothing.
I am mourning for her, and for my independence, which has always been so important to me. I feel I have changed from being a confident, self-assured and sexually active person to someone who is overlooked, disempowered, a non-person in a wheelchair.
As an example, I recently encountered stairs going into the Comedy Club. My carer and I asked security officials how we could get in. The security guy contacted another guy by walkie-talkie, and said that there is a lady ‘with’ a wheelchair, rather than a lady ‘in’ a wheelchair. I feel I have lost my identity; I am trying to find it again and I believe I will, through writing.