What Is Life Like As An #Usher? #UshDay #Disability #Awareness

I have talked some in past posts about my disabilities; but I don’t recall ever going into detail about them. This post will do just that.

September 21st will be the 5th Annual Usher Syndrome Awareness Day. (Click here for more information) To celebrate, if you will, I wanted to share with you some of what it is like being an Usher.

In a nutshell, an Usher is both deaf and blind.

What gets most people confused is that they assume that being deaf/blind is that you see/hear absolutely nothing.

For most of us with Usher Syndrome, this is not the case.

Usher Syndrome has basically three types:

I: born with profound deafness; vision loss begins before age 10

II: born with moderate to severe hearing loss;  vision loss noticeable by late teens

III: born seemingly normal but progressive hearing loss by early childhood; vision loss begins in early teens or earlier

For a small percentage, Ushers will lose all sight (complete loss of light perception) and hearing. For the remainder, we will maintain some usable vision (all peripheral would be lost but many will retain some degree of central vision) with varying degrees of hearing.

I have Type II.

I was born with moderate to severe hearing loss though this was not diagnosed until I was in Kindergarten.  At that time it was determined that I only had about 35 percent hearing in each ear. Because of this, I was quite behind in speech development which speech therapy for two years helped remedy.

When I was a freshman in college, I began to notice increasing problems getting around campus at night. Two years later, I was diagnosed with Retinitis Pigmentosa (which explained the progressive vision loss).  Shortly after I visited the Ear and Eye Infirmary in Boston where I underwent two days of various intense testing which determined that I had Type II Usher Syndrome (RP with hearing loss).

These all occurred between 1977 and 1992.  Medical experts in these two fields (hearing/vision) were great for trying to pin point exactly what was wrong with me; but, they did little to nothing in helping me find ways to cope with these progressive losses which for many of us tend to lead to severe anxiety and depression.  This, I’ve noticed, still continue today for many however I am seeing a gradual change in the right direction.

So, along with roughly (now) 30 to 32 percent of hearing, I have very little peripheral vision left. I have no night vision whatsoever. Sun light and various indoor lighting hurt my eyes so I need to wear sunglasses nearly all the time. Colors are challenging to tell apart (if you put navy, brown and black beside one another, I cannot tell the difference.  The same for green-blue, orange-yellow, etc.). My depth perception is gradually declining (instead of seeing layers and edges, everything is meshed together. Simply put is that I no longer see things in 3-D instead everything is  in 1-D).  I can still read, but that is growing more difficult. I have tried to use audio books but with hearing loss, that at times has been frustrating.

I am now using a walking cane to help keep me mobile and out and about but at times this is also quite challenging as I really cannot rely on my hearing to pick up hidden dangers.

Over time, I have become more of a recluse and this does not help my depression; however, whenever I do have plans to head out of the house, I am besieged with anxiety that have oftentimes kept me house bound more times than not.

I “retired” from the workforce over four years ago.  At first, it was nice. Now, I’m so tired of staring at the walls and of being so isolated and uninvolved.  The internet has helped but I need to actually get out more. The challenge is finding things and ways to go about it.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Blind (Poem)

I wrote this poem (which I turned into a video-there’s just something about surrounding your written words with images and music that bring them to life) from a perspective of one who’s slowly losing her vision.

 

Monday Memoir: The Darkness Begins (Part One)

 

I thought living with a hearing disability would be difficult enough.

I was wrong.

Photo Credit: Pixabay Free Images

By the time I was twenty, I had a pretty good idea of what I wanted to do with my life.  So I pursued a degree in Physical Education with the hopes of going on to earn a masters in Exercise Science.  I wanted to work with college and professional athletes.   Being an athlete myself, I competed in cross-country, softball, as well as soccer.  Sports became my passion, and I’d wanted to make it my life.  Around this time I learned (finally) how to drive, and attained my driver’s license.

I was ready for the world.  To pursue my dreams at full speed.

Then, everything changed.

At first to me, it seemed pretty minor.  Getting around in the dark was growing more difficult.  I kept bumping into things (and people).  Stairs became more of a challenge.  Okay, so I needed glasses.  No big deal, right?

Wrong, again.

I went to see an ophthalmologist and was diagnosed with Retinitis Pigmentosa; a degenerative retinal disease which could result in complete blindness.

Being devastated was probably an understatement.

The next month my parents took me to Boston to see a RP specialist, Dr. Elliot Berson, at the Eye and Ear Infirmary.  He put me through several intensive tests over the course of two days, and confirmed that I did indeed have Usher’s Syndrome type II which meant that my deteriorating eyesight and hearing loss went together.

Lovely.

My dreams…my career aspirations…

I felt so distraught I gave up on them all.

I did, though, finish college and earned a Bachelor in Physical Education, but that was the extent of it.  I never went on.  Never moved forward.  I allowed my disabilities to destroy my confidence.   I’d withdrew within myself, and allowed everything else to vanish.

Spilled Raisins and Paper Shreddings by Amy Bovaird

amy-bovaird

 

*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.

 

Bio

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.

Links:

Website Facebook Page Amazon Audible

Usher Awareness: Own the Equinox

ushequx

 

 

In honor of Usher Syndrome Awareness Day on September 17th, I’m walking at least one mile a day for 25 days. I’ll then join my USH family around the world for the final 1.2 miles in this mile-a-thon.

If you can’t make a donation at this point, help me reach my goal by sharing this page on Facebook and Twitter!

Or, even better, send an e-mail to friends you think might be interested in contributing and include a link to my page!

Thanks so much for your generosity!

Help me own the Equinox. Together, we can make Usher syndrome history. #USHEQX
If you wish to follow my journey, please visit my page for updates.