As some of you may have seen on my Facebook page, a couple of my F.D. friends have started blogs. I absolutely love interacting with others who also have Familial Dysautonomia (F.D.), because I feel like we understand each other in a special way. I’ve only recently started reaching out to them, ever since I went to my first annual F.D. day in New York, back in 2013. There is one day every year, usually in June, when people with F.D. and their families come to New York from all over the world. We get to see lectures, eat lunch, meet with people, and do fun activities. It almost feels like these connections that I’ve made are filling a void I had in my life. I apologize for the mushiness of this comment hehe. But, I really understand now why people attend support groups for conditions / situations, etc. There seems to be a feeling of relief when I don’t need to explain or justify my wobbliness for example… everyone there on that day knows why I am the way I am. Mostly because they are that way too. Now, of course this is not to say that we are all the same, because naturally F.D. affects us all differently. But still, that freedom of not needing to explain is really very liberating. I have been back to one other F.D. day since then, and both times were great.
Here is a picture of Gen and I at F.D. day back in June of 2013. If you look closely, you can see our name tags 🙂
Anyways, back to my point. Being able to read the blogs of these two women has been very inspiring for me. Just being able to see them live their lives with F.D. and find out how they cope with everything, makes me feel all warm and tingly inside 🙂
One of them shared stories of trips she’s been on. My goodness, she has done a lot of cool stuff! What also really stood out for me is that she goes by plane to all of these places. What’s the big deal about that, you might be wondering? Well, the truth is, I haven’t been in an airplane for about 14 years. Flying used to be something I did often when I was a kid, but then I stopped because I started having crises whenever I was on the plane. The last time, in 2003 when I went to New Brunswick, I did wind up getting sick on the way there. Not a fun experience, for sure. I haven’t gone by plane since then. So, when I read that this amazing woman travels by plane, it was very inspiring for me. My hope is that one day I might be able to fly once again. My theory is that my anxiety had a lot to do with the issues I had back then, so I feel like now that I’ve been learning how to cope with stress and stuff, it might push me in the right direction. Towards those planes, that is. Being able to fly to Israel and see my grandma would make it all so worth it.
I have faith that it will happen one day! 🙂