*Today I love to introduce to you a very special lady-Amy Bovaird, best-selling author of Mobility Matters: Stepping Out in Faith. She’s here to talk to us about her struggles and challenges with a progressive disease, and how she uses her faith and humor to persevere.
I was delighted when Carrie asked me to write a guest post for her blog back in the spring of this year. But first I was traveling and then I was working frantically to finish my new book, Cane Confessions, The Lighter Side to Mobility. It wasn’t until now that I had time to write the post. I’m grateful for Carrie’s flexibility and to have the opportunity today to share my story.
As someone losing her vision and hearing, I face many obstacles each day. The only constant is that I will continue to lose more vision and hearing. The variables change at different intervals of this disease I suffer: what I now know to be Usher Syndrome, the leading cause of deaf blindness in the world.
There are three types of Usher Syndrome: A, B and C. The first begins with hearing loss early in life, the second type is adolescence and the third, the type I have is discovered later and is characterized by a late onset of progressing hearing loss.
Vision loss is a challenge; hearing loss is a completely different challenge. Neither is like being born deaf or blind. Thus, the progressiveness of Usher is the biggest hurdle of all. One never quite adjusts because the losses are ongoing.
Probably my biggest struggle came about eight years ago when I faced using a white cane. To me and many others losing their vision, using a cane shouted “I am blind,” louder than any word. For some reason, being blind is viewed typically as a weakness or deficit by both society and the person who faces the cane.
I overcame the obstacles attached to using a white cane through my faith. Strangely enough, God used a completely blind mobility instructor to help me overcome my fears and to bring “blindness” into perspective. It’s only as negative or restrictive as the person facing it, permits it to be. This wowed me!
Now, it’s not what others think about me that challenges me. As a child of God, I believe have great value and that God has a plan for my life. If I hold to this truth, that becomes my constant and the changing visual and hearing perspectives are manageable. Instead of being overwhelmed with the frustrations I face every day, I look for the humor in these situations.
Once I dropped a box of raisins and no matter how many times I bent over to pick them up, I would turn back to the floor and see yet another raisin or two I missed. By the fifth time, it seemed I had gotten them all (but I found another a week later that I missed). That same day, I knocked over my paper shredder. I groaned as I bent to sweep the shred into a dust pan. Again, no matter how many times I tried to sweep them all up, I still found stray pieces outside my line of vision. It’s teaching me patience. These spilled raisins and paper shreddings represent my everyday difficulties, whatever they may actually be. It could be not seeing the top of a trash can, or like today, not seeing the recycle bin at the local grocery store though it was nearby. Humor and patience help me face up to the everyday vision hurdles.
Losing my hearing takes even more patience. With moderate to severe hearing loss, I am easily frustrated and have cried a few times. I hate to keep admitting when I can’t hear a person, especially after three or four attempts. One of the ways I cope is to pretend I’ve heard. But sometimes that gets me into hot water! God is working on my heart to bring about more honest communication and to let my pride go.
We all experience aggravation but ultimately, we choose how to cope with them. What has helped me in recent years is looking at positive role models of those who live with Usher Syndrome or Retinitis Pigmentosa (ongoing vision loss). I also journal and talk to others. I try to live a life of gratitude and appreciation for the acts of kindness others show me. Humor and it. Laughter helps me keep to continue picking up the spilled raison and paper shreddings each day. Most importantly, I’m learning to trust God’s plan for me, even when I can’t see or hear what’s coming around the bend.
As an international traveler and teacher, Amy was diagnosed several years ago with a dual disability—progressive vision and hearing loss due to Usher Syndrome—but continues to enjoy running, hiking and traveling. Amy is an accomplished public speaker on a variety of topics based on her life experiences and also volunteers with local and national animal rescue organizations. She has written two books: Mobility Matters: Stepping Out in Faith (© 2014) and Cane Confessions: The Lighter Side to Mobility, to be released in November 2016. She blogs about the challenges she faces as she loses more vision and hearing, shares the lessons God reveals to her through her difficulties and manages to find humor around almost every corner.