I watched a repeat of a programme  on 27th December on Channel 4 regarding a paratrooper called Ian Hamilton, who changed sex and became a woman called Jan. Filmed by Jane Preston for Cutting Edge, it is a searingly honest and compassionate portrait of a bright, articulate, humane person, that was originally aired in March 2008 under the title, Sex Change Soldier.

It got me thinking (dangerous I know) about what it is that makes people believe they know the real us. What do others think about me? Who am I? What are my core values? What makes me tick? Do other people really get me? Or not? Do they actually want to?

It seems to me that in this age of technology, with texting and mailing being the most common ways to communicate, so much gets left unsaid. Or worse still, we actively misunderstand. Because we do not have the tone of voice of a phone call, or the body language of a personal encounter to give us audible or visual clues, we may take serious offence where not only was none intended, the opposite was in fact true.

One of the saddest things to watch on Sex Change Soldier was the palpable pain of Jan when he realised that his family were turning their backs on him. They not only no longer had a son, they no longer had a child. I can understand confusion. I can understand sorrow. But to then couple that with rejection? No, that I cannot.

I have encountered this sea change in the way that people think about me, look at me, respond to or deal with me. Albeit on a much more minor level. I have multiple sclerosis. At the moment it has put me in a wheelchair. Why do people assume that I am the wheelchair? That I am the illness? Why do they think that I am defined by either in any way? That either of these has in any way changed who I am?

Yes, it’s true, the reality of both makes my life more difficult, travel tiring, sudden change more awkward. But that doesn’t mean I am any less prepared to rise to the challenge. I may get frustrated, I may get impatient with legs that don’t work as I’d like them to, but if anything it just makes me more bloody minded. And yes, I know that the people I am with will have to think ahead, make adjustments themselves, probably alter the way they do things slightly, but then the rewards are great for both of us. Although I say it myself, I have always been pretty good company. That hasn’t changed because my body does not work as well as it used to.

It is the same on a much larger scale for Jan. She is the same intrinsic person. She has not had a personality transplant. She has the same values, beliefs, intellect, capacity to love and be loved. It is merely the package that it is contained in that has altered. People will tell her that it is not her problem. That it is the fault of those who should love her and have chosen instead to neglect. And yes, it is their fault, their fear that has created this hideous stand-off. And I ask what are they so afraid of? Ridicule? Sly innuendo? It seems so. Jan certainly said that she was sad that her parents made it all about them, not her. That they  thought more about what their friends would think than the pain she had suffered for years. And of course, the courage to do what she eventually did, in the face of hostility from her family and many of her comrades in the amy.

But it IS her problem, because it has wounded her so deeply, it is mine because I am me, not MS. It is astonishing how many people get embarrassed when their children ask why I am in the chair. They are kids. They are curious. I usually reply that we both have push chairs because like theirs, my legs would get too  tired if I tried to walk around the shop. I can’t possibly count the times that people talk to the person who may be pushing my chair or walking alongside me rather than me, as if I’ve lost all mental faculties along with the use of my legs. I have not. If anything they are sharper, my instincts more sure.

Why? Because this illness has taught me a great deal about what matters in life and what does not. What is important and what is frivolous. What is essential and what is not. What real friendship is and why it is so precious. Which things are absolutely worth fighting for. What unconditional love really means.

In my own life, I force the envelope, but I am pragmatic. I know how to pace myself. I know when to push and when to stop. I will not let this illness defeat me, but I also have to acknowledge that it sets me certain rules that I must follow if I want to stay as healthy as I can be within its constraints. But, when is all said and done, chair or not, I am still, unashamedly, ME!