I was born with a recessive gene disorder called Usher syndrome. Both of my parents had the mutated gene, which meant there was a 1-in-4 chance that I would have it. Despite that 25% chance, both my brother, Ethan, and I have Usher syndrome.
We were born deaf and have a eye condition called retinitis pigmentosa (RP). RP slowly breaks down the light-sensitive cells in my eyes, causing night blindness and resulting in the loss of my peripheral vision over time, leading to tunnel vision. Currently I have between 10 and 20 percent of my central vision. Additionally, I have no balance due to abnormalities in my inner ear, also caused by having Usher syndrome type 1b.
For my parents, having two children with Usher syndrome was and is all they know. My mother has written articles for this magazine ( epmagazine.com) covering various aspects of our journey, including advocating as a family, finding positive influences, and building a support network. Working together plus therapy of all kinds have played a key role in helping us build the physical and emotional strength to manage our challenges so we can find success, despite the difficulties we face. My brother's article, "Getting Comfortable with Being Uncomfortable," in the April issue ( reader.mediawiremo- bile.com/epmagazine/issues/208904/viewer?page=39), discussed how frustrating things can be for us, but showed that we have learned to deal with it. We have learned to speak up!
WHAT DOES THIS MEAN FOR ME?
Life is not easy… not in the slightest. However, I have found ways to make life a little easier and more enjoyable. Living with Usher syndrome is exhausting, beyond even all the things you may have read about the diagnosis. No one sees the fatigue that comes with it, and all the small things that people don't notice. People often tell me that I don't look "deaf" or "blind" or like I have a disability. This is not really a compliment, because I do have a disability and I need help rather than misunderstanding. It is the hidden side of Usher syndrome that creates the frustration, because I have to constantly "speak up" to explain my needs or explain why something happened.
Day-to-day life is not simple, whether it is not knowing when someone is talking to me because I do not hear or see them, or walking into an unseen object. For example, the yellow "caution wet floor" signs are a major hazard that I will probably continue to walk into for the rest of my life. I end up walking into a lot of things accidentally, whether it's brushing against a wall, a pole, or even a person: children are really quite tough for me sometimes. I am not even able to walk in a straight line because I have no balance. Even the simplest task like walking requires thought because I have no balance. It is hard for me to walk straight, especially on uneven ground.
EXPRESS YOURSELF: The Morrobel family; "Advocating for myself became second nature, because it was a skill honed throughout my life. I am grateful for the foundation my parents built, and I'm excited to see where this path of self-advocacy takes me next."
