In 1997, I was diagnosed with Usher Syndrome Type 2. I have a moderate to severe hearing loss combined with Retinitis Pigmentosa (RP). My hearing has been stable my entire life and with the help of hearing aids I am able to hear pretty well.
My vision is a different story. It is slowly starting to go. In 2011, my night vision became so bad that driving at night was no longer safe. In 2012, my loss of peripheral vision stopped me from being able to drive at all. This past year, I began to use a cane. Today, I bump into things all day and everyday. Crossing streets is a challenge. Darkness is darker for me, and all forms of light are extra bright.
My vision is going. The world will not wait for me.
On Saturday, February 1st, I am leaving Madison, Wisconsin to travel the world for 40 days and 40 nights. I am putting the choice of where I go into your hands. During my journey I will be blogging about vision issues. I will use social media to engage with others about the challenges, opportunities, and research.
My final destination will be Austin, Texas where I will attend South by Southwest. A conference involving Social Media where I hope to share my experience.
To decide where I am going, please visit my Facebook Page and comment where I should go. The journey begins Saturday!
I have RP and have been living in Hong Kong for three years. I commend everything you’re doing and understand how scary it must be! Please please share your experience with the works and those who you inspire. See everything, do everything! It may be scary and we may fall, but at least were falling where we’ve never fallen before (;
Thanks Alicia! I appreciate the support!
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