Today is International Ataxia Awareness Day. Back in June of 1998 I had never heard the word. However, by the following month, the word “Ataxia” had become all too familiar. It was really scary for a mother of a 2-year old and a 5-month old baby. But now I look at my now 19 and 17-year old and realize how much we’ve spread the word. We have reached countless playmates and their parents, classmates and teammates. Not to mention all the groups I’ve participated in over the years. However, there are still lots of people out there that have never heard the word “Ataxia”.
I have found myself worrying too much about what others think. When my kids were little maybe that philosophy was somewhat justified. I did not want my children to have to deal with the repercussions of having an “odd” mother. One example comes to mind. I can remember one time when my daughter was little (maybe 1st grade or so) and her classmates were playing ball in the schoolyard when it got away from them and started rolling down the street. Being nearby, one of the children yelled to me, “Mrs. Gorzela, can you stop that for us?” I didn’t know what to do. I obviously couldn’t run down the street after it. But I was concerned how it would look for my daughter, if I just flat out refused. So I cooly threw my backpack at the ball and lo’n behold, it actually landed in front of the ball, stopping it! Then I could just walk over to it and pick it up. The kids cheered.
John Mauro is creating a gingerbread Ice Castle at the Auburn Mall to support Ataxia research. Let’s SUPPORT him! The full article can be read here: http://yankeeshopper.net/content/john-mauro-create-gingerbread-ice-castle-auburn-mall
I have Ataxia! And I am not the only one. If you are reading this, this may also be what you are dealing with or someone you know may be dealing with this. So, how do I respond when people look and stare?
Hi, my name is Donna Gorzela. I grew up as Donna Bibeau in the city of Lawrence, Mass. I graduated from St. Mary High School in 1981 and then attended the University of Lowell where I received a BS(1985) and MS(1986) in Math. I then went to work for the MITRE Corp. and Dynamics Research. In the spring of 2000, I went out on disability.
In 1998, at the age of 35, I was diagnosed with Ataxia. I then went 13 years being of “unknown” type but now I know I have ARCA – 1.
I am very involved with my church and volunteer a lot of time there. I also spend time working on the Ataxia Group. Additionally, I volunteer at the farm in Ipswich where my service dog, Denim, is from. I am also a member of the Andover Commission on Disability. In my free time, I like to read, cook, take piano lessons and attend a pottery class. I love hand-building with clay as it is so forgiving when your can’t pull off “smooth”. I like going for walks around the neighborhood, hiking and riding my recumbent trike. I’ve also been known to participate in some more “adventurous” activities such as sky diving and zip-lining. I’ve also tinkered in watercolor and origami.
I want this to be a place where we can write about our experiences with Ataxia. I want people to know they are not alone. So I try to give my life with Ataxia a positive spin and hopefully those that read it will come away with a feeling of peace, acceptance and hope. Sometimes I feel that this Ataxia can be so depressing but by writing about my feelings, in public, I force myself to look at the positives. I know I don’t enjoy reading about depressing thoughts and listening to people whine (which is so easy to fall into with this condition) so I wanted to write about something different.
My hope for this blog is that it brings further awareness about what Ataxia is and provides support for those that are dealing with Ataxia.