Hi everyone. My name is Tully Zygier and I am a 29-year-old woman. I am a Social Worker and I work at Yooralla as an Advocate and as a coodinator for a peer support program. I enjoy eating out, cooking for friends and family, going to the movies and reading crime novels. I have a chronic illness called Familial Dysautonomia (FD), which is a disorder of the autonomic nervous system. People with FD have frequent vomiting crises, pneumonia, problems with speech and movement, difficulty swallowing, inappropriate perception of heat, pain, and taste, as well as unstable blood pressure. The condition is degenerative but over a long period of time. Personally it has affected my balance and coordination and as of two years ago I use a walking frame (please see the Familial Dysautonomia link on the side of the page to find out more information).
Last year I decided that I wanted to go traveling on my own. Realistically I knew that wasn’t possible and so I decided to contact the Familial Dysautonomia Foundation in New York to see whether they were interested in having me do some work experience with them. I gave them a summary of my work experience, as well as my education back ground and attached my CV. After I sent the email off I gave little thought to it and continued on with my life.
A week later I received an email from the assistant to the Executive Director, informing me that they would love to have me come and visit and would I mind making a time to call them to discuss it further.
When I rang them I was a nervous wreck and my mouth went dry and I couldn’t stop perspiring (blame that on FD!). David Brenner, the Executive Director, was impressed with my life experiences and thought it would be great to have me come to New York to be an inspiration to others affected by FD. Not only did he want me to come to NY, but he also wanted to have an article written about me in one of their newsletters.
Our conversation ended with me arranging a time to speak to Deborah and be interviewed by her for the article. As I hung up the phone I was in shock and knew that it was time to tell my parents about my plans. Telling them wasn’t as hard as I thought it would be and I think they were stunned and impressed by the steps I had taken.
The idea of traveling independently had never crossed their minds – let alone mine. Years ago I considered traveling with Curtis but that never panned out.
Traveling for me is a big deal. Even tackling the airport is a drama. Because I now use a walking frame, I have to take that into consideration when arriving at the airport. I am not allowed to bring it onto the plane due to its size and so that has to be handed over at some point from checking in to getting onto the plane. When flying long distances I need an oxygen tank for a number of reasons (this will be explained later on), which has to be organized well in advance. Then there’s the issue of lay-over: how do I get from one terminal to the next?; will I have the energy to board a plane only after a short break or do I have to stay over night and leave the next day?
These are things I have to take into consideration even before I arrive at the designated destination. Once arriving in another country it’s a whole other ball game.
Once the trip became more realistic my parents became more hesitant. They couldn’t imagine that I would be mature or capable enough to take it on. And because of their thoughts I started to doubt myself. How could a woman who has never travelled independently before be able to travel to one of the biggest, busiest cities in the world on her own?
So, I decided to make this trip as safe and as planned as possible. I also decided to keep a record of my journey for people to read. I am a woman with a disability who will face many hurdles along the way to New York. If there is someone out there who is also considering traveling independently, they will be able to see that it is possible.
Welcome to my blog.