Change has always been hard for me, no matter how big or small. In fact, a few weeks ago, my husband switched out the living room rug with the one that was in our bedroom. Once I made the discovery that he did this, I immediately told him that I didn’t like this change.
But change is my reality due to Usher Syndrome. Usher Syndrome is a condition that is characterized by hearing and vision loss. I have moderate to severe hearing loss, but it has been stable my whole life. My vision, however, has gradually changed over the last decade due to Retinitis Pigmentosa (RP).
It started with a change in my night vision. No more walking around in dark unfamiliar places alone and certainly no driving at night. Then, there was a slight change in my peripheral vision. I had to be careful not to stub my toes on low objects. As my vision continued to change, I had to be careful not to bruise my shins or run into chairs that weren’t properly pushed in. Then, there was a more dramatic decline in my peripheral vision and the day I dreaded came. I had to hang up my car keys for the last time five years ago. Now, I am legally blind with about 10% vision.
The constant changes in my vision were hard to adjust to. It seemed like as soon as I got used to one change, another one sprang up. But instead of zooming in on the difficulty of the changes, I try to focus on the opportunities that I have been blessed with because of Usher Syndrome. I like to call it my blessing in disguise. If I had not been blessed with Usher Syndrome, I would not have had the pleasure of learning American Sign Language. I then would not know the joy that comes from teaching ASL to families with deafblind children. I would have never been invited to advocate on Capitol Hill for individuals with Deafblindness, much less meet one of the presidents of the United States. I would have never gone to Uganda for the World Federation of the Deafblind conference and met so many wonderful people from around the world! Change is hard, but it can be the beginning of something beautiful.
And I am happy to say that the change in the living room and bedroom rugs was a change for the better. The living room is noticeably brighter, which is always a plus for this blind girl. The colors on the rug also compliment the curtains and wall color. It completes the room.
Virginia is an advocate, wife, teacher, and blogger. She teaches American Sign Language to high school students and families with deafblind children. She lives in sunny Florida with her husband and dog, Rosie.
