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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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.

Writing: The Zero Moment

Click on the image for the DIY MFA Book

Gabriela Pereira:

The hardest step in your creative development is the “zero moment,” the point where you go from doing nothing to doing something. The distance between the zero moment and being a newbie is far greater than the distance between newbie and pro, yet rarely does anyone celebrate this pivotal, important step.
Today, I want you to celebrate. Think back to your zero moment and do something to celebrate that incredible leap of faith. Maybe your zero moment was ages ago and you’ve forgotten all about it. Maybe you’re in that moment right now. Regardless of where you are on your writing journey, I want you to pause and celebrate that enormous first step that brought you to where you are now.

Photo Credit: Bellarmine Magazine

 

I had a handful of “aha” moments when it came to writing.  The first one came when I was a girl (shared this in my How did I become a writer post) when a friend challenged a group of us to see who could write the scariest story.  That was the moment I realized that there was a safer way to channel my imagination, and that was through writing them down on paper.

Throughout high school and most of my college years, I journaled.  It was your typical teenager’s angst and boy-crazed, and trying to figure out what I truly wanted to do with the rest of my life kinds of stuff.   Journaling was a way of dealing with frustrations and disappointments as well as perusing through all the puzzle pieces of life, and trying to see what fits and where.

When I was looking at colleges, I toyed with the idea of either Journalism or English major; but, I’d felt that I didn’t possess an aggressive enough personality for Journalism, and found the course work for English to be too dry and boring.  So, I ended up majoring in Physical Education instead since I enjoyed sports.

I’d envisioned myself working with either professional or Olympian athletes.  I received an associate degree in Physical Education, and went to an University in Virginia to pursue a B.S. in Exercise Science.  I was well on my way to attaining that particular dream.

Then Life intervened, and everything changed.

Between graduating with my A.S. degree, and heading down to the University, I was diagnosed with a progressive eye disease, Retinitis Pigmentosa.  Because I also had moderate hearing loss, the specific RP I had was Usher Syndrome.

I was slowly going blind.

This shook everything up.  So much so, I practically gave up on all of my dreams.  I stayed in college though as I didn’t know what else to do. From there, I transferred around at least four different colleges, changed my majors several times, but eventually went back to Physical Education and graduated with my Bachelor degree.

In the midst  of struggling with coming to grip with RP, and confusion about my future, I met and married Aaron.  However, with a year left of college, Aaron was in a car accident, and died.  We were married only nineteen months.

I could have dropped out of college, but didn’t.  I decided that since I was that close to graduating, and needed something to keep me busy, I finished out the last year.

Between the diagnosis, and Aaron’s death, I stopped writing altogether.   Misery became my best friend as I holed myself up in an apartment (by this time, living on social security disability).  Those were dark years.

Three years later, everything changed again.

In come Jay.  Jay and I were good friends back at the very first college I attended. Then we went our separate ways.  But, in late May of 1999, we reconnected.  Something more blossomed between us, and we were married in September (same year).  Days before our wedding day, he gave me a gift.  A beautiful leather-bound (with a picture of a cute cat on front) journal.

It was full of empty pages.  Pages that called out to me.

This was probably my true “zero moment.”  The moment when I realized I must write; not just for the sake of writing itself, but for my mind, spirit, and soul.

And, because the price was too high NOT to.

What about you?  Do you remember your zero moment?

 

 

My Own Battle With Mental Illness

Doll Hospital is an art and literature print journal on mental health

Just a little blurb this week about an essay I have published with the current issue of Doll Hospital Journal.

In the essay,  In Search of Hope, I recount my struggles through various losses and disabilities that brought me close to suicide as well as my battle with anxiety and depression.   Mental illness also runs in my family.

What helped me through all these?

Writing, and the love for my family.

For those of you struggling with mental illness, just know that you’re not alone, and to never give up!

*To read this digital issue, click on the Doll Hospital’s image on top and this will take you to the site to download the item.  It will ask for $5.00 but this is only a suggested donation amount. 

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.