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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

#IWSG: Book Titles Vs. Character Names

Click on the image to access this group’s official page

 

This month’s question: What’s harder for you to come up with, book titles or character names?

 

For me, the book titles (or for any type of stories, short or long) are more difficult to come up with.  A title has to encompass the theme and message of the story, giving the reader some idea of what it may be about.  Because of this, it takes a while to come up with a title that “feels” right.  Many times I end up giving a story a working title until I can come up with a better one.

With some stories, any title I gave never felt right.  For these, I usually set them to one side for a while in the hope that the right title will magically pop in mind.  It does happen, but rare.  I’d end up settling for one that I could live with, and move on.

What about you?  Which one is more difficult for you to come up with a name?

My #Publishing Dilemma

Photo Credit: Pixabay Free Images

I love writing stories and poetry, and one of my dreams is to be a published author.

However…

I retired from the workforce in January 2015 (five days before my 44th birthday) due to my worsening eyesight (coupled with moderate hearing loss), and now live on Social Security benefits as well as my husband’s salary.

Although I consider myself as a writer, I feel like I’m a faceless woman with no true status or identity of any kind.

Why is that?

I desire to write books and have them traditionally published; but, since I’m on Social Security, I’m not allowed to make any money. So, this puts me in a frustrating dilemma.  How do I go about realizing my dream now?

Writing is NOT a hobby for me.  It’s my passion and my life.  Would not making money off my writing put me in the “hobbyist” realm?  Gosh,  I hope not.

What to do?

I could self-publish but if I put my books on “permafree” would people want to “buy” and read them?  Would my books be considered as “inferior” just because they’re for “free”?

On the other hand, being in this predicament is somewhat liberating as I find I have more range to do things differently than many authors.  So perhaps this really isn’t such a terrible thing after all.

Hmm…

Writing: Using Fears as Your Compass

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Gabriela Pereira: “Share an example of when resistance has pointed you toward a writing project that was juicy and high-stakes… and maybe even a little bit scary. Did you face that fear head-on and overcome your resistance? What was the result of pursuing (or not pursuing) that project?”

 

This is a tough one.  I’ve encountered a lot of resistance to a lot of things for many reasons in my life.

Where to even begin?

There’s resistance due to having disabilities, and feeling inferior in that I don’t feel I will ever amount to anything.

There’s resistance due to experiencing verbal and emotional abuse as a girl, and then some as an adult, and along comes the feeling of not being good enough for anything or anyone.

These usually result in self-sabotaging myself so instead of succeeding in life, I end up failing or being bypassed for  career opportunities.

 I deserve to fail or to be ridiculed or be talked down.  I don’t deserve that promotion, or I’m not good enough or I’ll fail miserably at it.  So, why bother?  Who cares? 

A typical mantra I kept repeating and believing in.

And what did I end up with?

A lifetime of regrets.

Of what-ifs.

I could play the blame game, or a victim, but I won’t.

There are things I want to share with my readers, to let out, but I don’t want to hurt certain loved ones.  So, I thought about writing certain experiences in my fictional stories in hope that it will provide the cathartic healing that my soul yearns for.

So, I wrote dark poetry, and dark flash stories.  I journaled in notebooks now hidden away.  And as the years melted away, some of the pain from the past went along with them.

Now, I’m hoping to write my first book, and already I’m hit with fears and the feelings of inadequacy.  Why?  The book is a romance story with bits of comedy…what do I have to be afraid of?

That I want to be an author?  That I desire to be traditionally published?

That I want to be–successful?

Then an idea hit me.

Why don’t I write in certain subplots that involve abuse in relation to PTSD by using my own personal childhood and adulthood experiences?

Yeah, I think this might just work.

Stay tuned….

 

 

Thursday Thoughts: On Writing Life

 

Back when I worked full-time in the Banking industry, I used to complain how I never had enough time to write.  I’d get up each weekday morning by 4am to get myself ready first, and then get hubby and son up before hitting the road by 5:45am for over an hour’s drive (in 35 miles) into downtown Raleigh.  I’d work 7am till 6pm (most days).  By the time dinner and homework are done, it’s easily 9pm and by that point, I’m ready to crawl in bed.   Weekends were usually reserved for catch-ups, house chores, and errands.  I’d managed maybe an hour of writing time each week.

Now?

With being “retired’ from the work force (am only 46) due to disabilities, I have loads of free time on my hands.   I’ve discovered, though, I waste a lot of time doing pretty much “nothing.”

Nothing being spending way too much time on social media, and watching internet-stream tv shows and movies.  Well, these were what I was doing for the past year and a half before depression hit me hard.

Or, perhaps mid-life crisis?

I found myself looking back, and wondering what did I have to show for being here on this world?  I really didn’t find a career I enjoyed (long story) so ended up in the Banking industry for the last 15 years of my working life basically as a glorified paper-shuffler.

Family put aside, I had nothing tangible.

I wanted more.  I desired to leave a legacy.

At this point, I’ve published several short stories, essays, and poems; but 99.9% are online magazines.

I now want more.

Something solid, concrete.  Something I can hold in my hands.  And smell.

This means I need to get serious, and smart with my time management.  I figure a way to start doing that is by tracking every word I write.

Daily.

This means less time with social media and other forms of entertainment.

I value my writing gift, and feel I have at least one book within me, enough so that I need to start valuing my time more than I’ve done in the past.

So, this is where I’m at in my writing life.  At a cross-road, and I’ve decided on the path to take.  Now, let’s see where it takes me.

Got to love adventures, eh?  🙂

What about you?  Where are you at in your writing life?  Are you happy with it?  If not, what changes could you make?

 

Creativity and Mental Illness

I read an article recently that got me thinking about creativity and its role in mental illness (or vice versa): Creativity and mental illness share genetic markers on Genetic Literacy Project.

“Scientists in Iceland report that genetic factors that raise the risk of bipolar disorder and schizophrenia are found more often in people in creative professions.”

Hmm, this statement wasn’t anything I did NOT know; however…

“Kari Stefansson, founder and CEO of deCODE, a genetics company based in Reykjavik, said the findings, described in the journal Nature Neuroscience, point to a common biology for some mental disorders and creativity. ‘To be creative, you have to think differently,’ he told the Guardian. ‘And when we are different, we have a tendency to be labelled strange, crazy and even insane.’”

Wait, there’s more…

“Stefansson believes that scores of genes increase the risk of schizophrenia and bipolar disorder. These may alter the ways in which many people think, but in most people do nothing very harmful. But for 1% of the population, genetic factors, life experiences and other influences can culminate in problems, and a diagnosis of mental illness.”

Not only do we, as creatives, think differently I believe we also feel differently.  And we just don’t look (or feel) at the surface, we dig deep.

Very deep.

We dare to.

We must.

It’s okay if we’re viewed as being different.

Odd.

We’re used to being alone, standing in a room full of strangers (even family members tend to be viewed as strangers at times).

But do all of these make us mentally ill?

We tend to delve so deeply into our minds that we start to see things (and people) that may or may not be there.

We talk to our characters that no one else can hear.

Our minds…our imagination are our greatest weapons.

And our downfall.

All because “normal” people do not understand us.

But does that make us mentally ill?

Too Much Time On Hand=Lack of Focus

Photo Credit: wastedwriters.com

 

A few weeks ago I blogged about having too many creative ideas, but with no clear direction to take.

This past week, depression settled in as well two severe migraine attacks sapped the energy to do anything out of me.

It’s been a long winter thus far.  I’ve been pretty much house-bound since late November, and it is starting to wear me down.

For those of you who may not know, I “retired” from the workforce two years ago (I’m only 46) due to a progressive disability (Usher Syndrome).  Because of this disability, I’m unable to drive.    We moved to a rural area north of Grand Forks, North Dakota.  Rural in that I am at least 15 miles from the closest town, and closest neighbor over a mile away.  There is public transportation which I use on a weekly basis so that’s been good.  But with no friends or church (yet), I’ve been pretty isolated and alone most of the time (outside my family).

I hope to change this once Spring finally arrives.

Anyhoo, with all this “free” time on hand, believe it or not, I have NOT been very productive with ANYTHING.  In fact, I got more things (including writing) done back when I was working full-time.

Funny.  When I worked, I used to dream about being home and writing full-time.  Now that I’m in that situation, I’m finding it difficult to focus.

Anyone have this experience?

I’m wondering if I set up a schedule, would I stick to it?

Bottom line, I’ve noticed a trend since I left the workforce, and it’s disturbing as I really don’t want to admit it.

I lack self-discipline.

There, I said it.

Whew…

Now, just need to figure out the accountability part.

 

 

 

Writing: Looking Way Ahead

Click on the image to access this group’s official page

The question for December: In terms of your writing career, where do you see yourself five years from now, and what’s your plan to get there?

Wow, my first month with the group and they just had to ask this question.  What is a writing career?  I have always considered a career as something you get paid for while you pursue a passion or an occupational path which leads to promotions and higher pay grades.

I have hung up that “hat” in January 2015.  You see, I have a progressive disability called Usher Syndrome (where I’m slowly losing my vision coupled with moderate hearing loss); and because of this, I “retired” and went on Social Security.  And because I receive the SS disability benefits, I’m not to earn an income.

I’m only 45.

And believe me, I still have lots to live for!

So, back to the question.

In order to clear my conscience and help me figure out my answer, I consulted a dictionary and here what it had to say about the word, career:

“An occupation or profession, especially one requiring special training, followed as one’s lifework.”

Hmm, still having trouble with applying this word to my situation.  Let’s see what else I can find.

“I’ve learned that making a ‘living’ is not the same thing as ‘making a life’.”-Maya Angelou

That’s it!  A writing career to me isn’t about “making a living” but “making a life.”

Now that I’m feeling better about things, let’s move on.

For the first part of the question: In terms of your writing career, where do you see yourself five years from now?

Though I’ve been regularly writing and publishing (short stuff) since 2007, I still haven’t found that niche. I desire to have a book of some sort traditionally published in five years, but whether it’ll be the fiction or nonfiction sort, I haven’t a clue.  I have dabbled in all forms and nearly all genres, and I’m still in the dark.

Does this mean I should try to be one of those multi-genre/format kind of writer?

Or, should I continue to try and narrow down the area or areas of “expertise” for myself?

I’m starting to wonder if maybe I need to find a mentor to help guide me on this journey.

Sheesh, I’m all over the place.  See what you did, IWSG?  😉

On to the second part of the question: what’s your plan to get there?

At this juncture, I plan to continue what I’m currently doing: craft the kind of fictional stories that I’d want to read, and then find a home for them; plus write micropoems and essays about my various life experiences (have been dealt with a lot of losses that I’m still trying to work through).

Whew.

Survived this one.

What about you?  Where do you see yourself, as a writer, in five years?

 

 

The Magic of Writing (A Tale of Rediscovery)

 

“Books are a uniquely portable magic.”-Stephen King

Why did you fall in love with books?  How about with writing?

For me, it was the ability of books to transport me to other worlds; to meet new and interesting characters, to explore exciting and wondrous places and creatures.  They took me away from reality and I discovered the magical realm of imagination.

In time, I learned to transform those fantastical worlds in to words.

Magic was real to me.  I believed in impossibilities.

Myths and legends.

In dreams.

I’ve been called naive for most of my life.  Probably because I choose not to see the world in its present state (dark, ugly and full of chaos and violence); but with possibilities and potentials.

Hope and beauty.

I choose to look at the world with a child-like view.

Hence, I still believe in Santa Claus and elves, and knights in shining armors.

Does this make me silly?

Maybe.

It’s how I survive in these ever darkening times.

However, for the past several years reality has been slowly poisoning my mind.

I wanted to write darker stuff.  The media is full of these kinds of images and messages.

My inner being grew more hollowed.

Depression and negative thoughts settled in.

These writings that I could never seem to finish made me feel so…so empty.

I began to doubt myself as a writer, and even considered giving it up completely.

Then yesterday I sat down to watch an old favorite movie; one I hadn’t seen in several years.  Actually, I watched the first two back-to-back:

I felt like a kid all over again.  My mind full of magical things.

Ideas.

The same ideas I had many years ago but have shelved them.

No more.

It’s time I honor the writer I truly am.

“I want to be magic. I want to touch the heart of the world and make it smile. I want to be a friend of elves and live in a tree. Or under a hill. I want to marry a moonbeam and hear the stars sing. I don’t want to pretend at magic anymore. I want to be magic.”-Charles de Lint

 

Spilled Raisins and Paper Shreddings by 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.

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