Learn about living with Usher syndrome from people with Usher

Bill's Story

I was deaf by the age of 5 and began my journey with Usher’s Syndrome at the age of 28. Yes, it was not until 23 years after losing my hearing did I find out that I had been going progressively blind for most of my life. What I thought was normal in terms of how I saw was anything but.

I am married, have three sons and I am an avid skier and water sports person. I have worked for the same Fortune 500 corporation since I graduated from the University of Southern California in 1984. I started in outside sales and I am now the Director of Marketing for the Steelcase Premium Group in Grand Rapids, Michigan.

I have always gravitated to places where others have not gone before. Largely, more by accident than intention. So much of my journey with Ushers has been about walking my own path in life without having a lot of people to turn to. That is why I am so enthused about the potential promise for the Coalition of Ushers Syndrome! We have made so many strides since I found out about my disease in 1989 and there is so much more to come!

In short, while I did not ask for Ushers Syndrome in my life it is probably the best thing that has ever happened to me. It has made me focus. It has given me a life not of limitations and pressing physical challenges… but one based on accepting my gifts and from there imagining my possibilities, opportunities and potential.

Sometimes the greatest constraint to moving forward in our lives is getting past ourselves first.

I have a passion to help others get to a better place in their lives and have had experiences that will carry me forever. I passionately believe that assistive technologies like hearing aids, wireless hearing systems and night vision technologies are changing the way that disabled people live, work and play.

To that end, I had a crazy idea at age 45. I decided to climb Mount Kilimanjaro with no previous climbing experience. It was not to prove that I could take on one of the largest mountains in the world as a testosterone-driven athletic feat. It was about helping others learn about these great new technologies and how it changes lives for people like me. It was about hope, education, support and advocacy.

I never imagined the power of an idea would land me in the local, regional, national and international media. I never imagined that I would travel the world sharing the story of the climb and my Ushers as a motivational speaker. God has a plan for all of us and he has given me this amazing path.

To learn more about Bill and his adventures with deaf-blindness click here.

Bill can also be reached via email at: billsmessage@comcast.net

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