When I skyped with my mum and dad last night we discussed how I might write this entry. It can’t just be a rundown of the day, FD Day has to be more reflective. What I went through yesterday was emotionally draining and when I got back to the hotel I broke down a little. When I say that, I meant that I cried. I cried to my parents because of the things I learnt and because of the people I met.
FD affects people differently. Some people are like me and their only major issue is their walking. Some people are unable to drink or eat because food and liquids go down the wrong way and they end up choking. These people have to have their meals through a tube. Some people cannot feel heat and are unable to cook or use a microwave. Some people lead perfectly normal lives and only just started using a walker in their 60s. Some people are married and have children. Some people catch pneumonia and end up getting very sick and need pacemakes and kidney transplants. No two people are alike. And yet we are all connected. I hadn’t met these people before but I felt a bond that I haven’t felt with anyone else. We get each other and we don’t have to explain ourselves.
Yesterday there were a number of lectures and the issue of gene testing was a common theme. People are able to be tested whether or not they carry the gene. If women fall pregnant and find out their foetus has FD they have the option of not having that child. And while I understand that no parent wants their child to suffer, I can’t help but think what if this test had been available when I was born. What would my parents have chosen to do?
Meeting these people yesterday I was able to see how special they are. And most of them are happy with their lives and don’t focus on their illness. If testing had been available for their parents what would they have chosen?
I am still trying to wrap my head around this question. Maybe it’s a stupid thing to dwell on, but it makes me sad.
As you may know, I was honoured yesterday for my accomplishments. Seven people were honoured for various achievements, some for completing their degrees, some for the jobs they are doing and some for the strength they have for their day to day lives. Dr Axelrod, leading professor of FD, gave a brief summery of these accomplishments and each of us stood up. We were all applauded and when this happened to me, all I wanted to do was cry. Yes, I am self-involved, but when you have a chronic illness you have to be because you have to look after yourself and protect yourself constantly from getting sick or falling over. And it’s bloody tiring. For my achievements to be acknowledged and to be applauded allowed me to feel proud about myself. Proud of moving out of home and proud of traveling overseas – on my own.
My entries have been happy, joyful comments about my experiences here in NYC. I have mentioned occasionally issues about my frame, my balance, my falls, my tiredness. But I don’t think you realise how much this is taking out of me. I am looking forward to going home and collapsing on my bed and not having to be ready for my next adventure.
And finally, I have met people who understand this.
PS. Readers, you will get a rundown of my last few days, but this will come later.