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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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?