We can do anything if we put our minds to it. One day at a time. These are two mottos that I live by.
My name is Jamie Seeger and I am a young adult living with the monster called Alstrom Syndrome. I currently live with my brother Jason, who also has the syndrome and my parents near Philadelphia Pennsylvania in the United States. I hope this message gives some of you hope that this syndrome is not all doom and gloom and one can thrive with it. Here is my story.
In the early 1990s, when I was around 10 years old, I received the news that I had Alstrom Syndrome. At that time the doctors knew nothing and the Internet was not around. At that time I was in middle school and kept on living my life. At that time my eyesight was failing and I already had a hearing loss. Luckily I avoided the major organ failures associated with this monster. Yes not everyone gets all of the symptoms with this syndrome. I learned braille and continued to get weekly mobility lessons provided by the school system. In 1995 I finally got the chance to meet a few others that had the syndrome and the journey of ASI began. I finally knew that there was someone else out there that had what I have, but still many doctors were still in the dark. Again life goes on. I then went onto college. I lived on campus in a dorm with other roommates. The hardest two things were trying to fit all of my technology into a room no bigger than a closet and trying to get along with people with different personalities than my own. I was able to survive the four years of college with many memories. I graduated with honors with a BA in Political Science. Now I have the education now I need to navigate the rough and tough job market. I got a bit lucky in this direction. A friend of mine recommended me for an access technology teaching job. Yes me who knew very little about computers was going to teach other blind people how to use the computer and how to use their speech software. I would have to travel into the city of Philadelphia. Was I scared you bet I was. With some great mobility training I was able to accomplish this. Unfortunately, this company decided to move its location and it became too far for me to travel. So back to looking for another place to work. I again turn to another blind nonprofit organization and continued to teach blind people how to use computers. Eventually I added in the job of teaching braille. In 2008 the economy in the USA took a turn for the worse and finally in 2012 I had to face the reality of being downsized. Trust me that was not a good feeling. In 2014 I started the process of becoming a certified braille proofreader. In 2016 I received my certification and I am currently working as a braille proofreader in center city Philadelphia.
Yes the road has not been easy at all dealing with Alstrom Syndrome. There has been many bumps in the road. One thing that has kept me going through it all is my love for playing the piano. Through the use of braille music and a faithful instructor I been able to record several pieces up on YouTube under my name. I am here to show you that one can still have a normal life despite this syndrome. One of my favorite groups Train has a song “Calling All Angels.” That song has a line that I think sums up things up nicely. “I won’t give up if you don’t give up.”