The fat lady hasn't sung yet

I'm back in this time zone-it took four days of serious jet lag, but I'm here. More or less. If I'd stayed a few days longer, I would have been grounded due to the hurricane. Part of me wishes I'd been marooned in New York!!

I have learned so much from this trip home. I realize that I have felt angry, fearful and bitter for longer than the two years and three months since the incompetent doctors at Bart's Hospital crippled and nearly killed me. I've lived in fear and survival mode since I walked out on a manipulative, bullying husband nearly ten years ago. He told me that if I left him I would never survive-and, although I set out to prove him wrong, there were times when I wondered whether I made the right decision. It was so very, very difficult!

I got the chance to look at my life - to really scrutinize it - while I was on the plane back from New York. Really, there wasn't anything else to do!! And I understood that, if I hadn't left the bully and run back to a teaching job in the States, I wouldn't have been diagnosed with toxoplasmosis (I've never had cats-so I'm still mystified as to how I developed that), and I would first have gone blind and then died. That is what toxo does in the end; it was due to a very good doctor in Pennsylvania that ordinary blood tests showed both toxo and CVID. And-I had no medical insurance, so I used all my savings on medical treatment (the best treatment, but also very expensive) and then returned to the UK. I'd lived here for so many years that I could return and seek more medical care. That was how I discovered that the seven sets of genes that should provide my immune system are defective - and only 20 people out of every million are born with no immune system. How I lived this long is still a mystery. The condition isn't contagious; I could only pass it on through pregnancy - so nobody else is at risk. And, if I do all the right things, look after myself, am vigilant (without being obsessive), I'll be okay. For awhile.

I had all this to contend with, and I was beginning to just accept that I'm the one who is responsible for my health and for looking after myself-and then the two medical incompetents destroyed (and nearly ended) my life. That was very difficult. I found forgiveness very difficult (still do), even though I know that the mistakes they made were down to incompentence and stupidity rather than any deliberate act. But I couldn't walk, or stand, or read, or drive-or even wash myself, which was really, really humiliating. So I was naturally more than a bit pissed off!!!!

I realized as I sat on the plane that I have come a long way in two years. I'm the least patient person on this earth, but patience was something I had no choice but to cultivate. As long as I am improving-even though improvement seems to have slowed to a snail's pace-I know I can do more. I must do more.

I wanted to see if I could get on and off a plane, if I could see my friends, if I could walk around without falling in front of a moving vehicle-I wanted to see if I have progressed enough to actually be able to do something that isn't sitting on my behind in a room and feeling sorry for myself. And I could. And I did.

I didn't tell my family I was coming (there is truth to the statement that you can pick your friends, but you can't pick your family!!), but I did tell my friends. The people who are closest to me came to see me, and those who couldn't come to the hotel took the time to call. And, of course, I flew to Orlando to see NJ, for the first time in about 13 years, and I'm so glad I did that. Time doesn't always make people drift away; it can also move friends closer.

Even with jet lag for the first four days (and even with a cold sore, which was hugely embarrassing), I made myself go out. I walked-or, rather, I staggered!! I went to the mall and wandered around the shops, even though I just wanted to sit down; I pushed myself to do all the things that make me dizzy and uncomfortable. I pushed myself; I kept telling myself I could do it. I kept telling myself that I am more than a defective immune system, and that I am much more than a destroyed balance system - and I kept walking. And the fear began to subside.

I waited until the day before I was due to fly back to London-I didn't want to go into the city, because I was afraid of falling over, or of being pushed over. For some odd reason, I was really anxious and afraid. In fact, I couldn't sleep the night before I went. On the Wednesday morning, I procrastinated until it was nearly 9:30-and I decided that rush hour would be over, and I needed to learn to handle trains and crowds, regardless of the time of day. So I went. I took the bus to Jamaica Center-and it wasn't terribly crowded-and then took the E train to the World Trade Center to visit Ground Zero. It took me an hour, the trains were clean, I needn't have worried. I lit a candle in St Paul's Church and said a prayer for all the people who were murdered on that day; then I came back via 34th Street, where I just walked and dodged the crowds (it was now lunchtime, so I was really being brave!!).

I would never have attempted this trip six months ago-or even three months ago-and I didn't go everywhere I wanted to go, and I didn't see everything I wanted to see-but that will be done on my next trip. I want to go back next year, and I want to do it without needing a walking stick. I want my 80% - and I will get it, no matter how long it takes.

I feel much less afraid. In fact, I feel liberated. I did something I didn't really believe I could do. But I took the risk and did it - I don't feel obnoxiously smug, but I do feel braver and more competent (and much more secure) than I did before I left. I don't feel crippled or permanently disabled any more; I believe that we are all stronger than we think we are, and that we can do more than we think we can do-if we give ourselves the chance to prove it to ourselves.

I know that the next chest infection could be the last one-it could be the one that will carry me off. But I don't waste time in fear and doubt, in worrying about what will happen next. Time is too precious. This trip taught me that-and a lot more, besides.

I'm not afraid of dying. I'm afraid of dying without ever having lived.