I have been back for a few weeks now and while I have done since then, the trip is still fresh in my mind. Especially FD Day.
When I walked into the NYU medical centre I saw a young woman sitting down in the distance and I felt like I was looking into a mirror. She had brown wavy hair, glasses, was very thin and had a walking frame parked in front of her. She was sitting with a friend who had come to support her.
We sat together for a while and shared a short summary of our lives. We both have degrees, we both like to travel and we both like to write.
Alexia has written two short books with illustrations and they were self-published. I have read the second book where she shares her story of how she prepared herself to travel independently. And I guess I went through the same thing when I travelled to NY in 2010.
I then met a man named Sam. He’s a 40-year-old Englishman who is an actor and last year a documentary was made about him. This year he had a book written about himself which I read last week. The book is called Being Sam Frears and it is written by Mary Mount. When I first saw him he was sitting by a table and he had a rugged sexy look about him.
Spending time with Sam I could see he was an outgoing person and confident. But when his friend came over and he got up I could see that his balance was off and he needed the support of his friend.
His book gives an insight into his life. Sam spends most of his days with his friends. His friends know about his health and offer their arm automatically when they are about to walk. His FD just happens to be a part of him but it doesn’t define him.
After chatting with everyone we spent the next couple of hours listening to the doctors and the researchers discuss the latest research. And I really tried to take it in but what got to me was when the head doctor of the FD centre asked the people who had been honored throughout the years to stand up. Despite living with an illness that could potentially be fatal, there were some remarkable people standing up.
People with degrees, people with jobs, people who volunteer, people in relationships. The list is endless. I couldn’t help but choke up. I was so proud of these people. They, we, face daily struggles and it would be so easy to give up but we don’t. We pick ourselves up every morning and we keep on going.