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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Learning To Cope

It’s been nearly two weeks since I arrived at the School for the Blind for my week of training and support.  I’d meant to write up a post earlier than this, but I’ve been a busy body all this past week.

A good thing really!

I have people asking me what kinds of things visually impaired adults do at the School for the Blind. This post, I hope, will answer some of their questions.

The School for the Blind in Grand Forks (North Dakota) is mostly geared for school-aged kids but the ND Vision Services offers quarterly week-long training sessions for adults at the school each year.

Awesome’s my humble opinion.

What types of training do they offer for adults?

Well, when you first express interest in attending, you have the option of selecting any of (or all) the following six types of training/support:

Adjustment (coping skills, therapy, etc.)

Daily Living Skills (cooking, housekeeping, organization, etc.)

Technology (learn about all types of accessibility options with computers, phones/cells, etc.)

Orientation/Mobility (cane training, learning skills of getting around at home or in the community, etc.)

Braille

Vocation/Career (what’s out there for a visually impaired person, job training, career preparation, etc.)

 

The week began at 8:30am Monday; but first, I arrived there Sunday evening where I was greeted by the House Parent, Amy.  My “room” for the week was actually an “apartment.”

My “room” at the School

The School has two “apartments” reserved for teens where they can learn Independent Living Skills. They are equipped with a full kitchen, one bedroom, full bath, living/dining room which has an extra bed and TV w/ cable. I lucked out and was assigned to one of these rooms.

Awesome.

During the week, there’s a House Parent on duty between 3 and 11pm, and then another one for the overnight hours until the instructors arrive usually around 7am.

Each week day began with breakfast at 8am held in the large kitchen/dining area where in order to get there from your room is by maneuvering through a series of thinly carpeted hallways (in my mind have always been a sort of maze with strange series of tiled, checkered-style blocks at certain sections throughout each hallway).  But this time I learned their purpose! For an individual who’s completely/mostly blind, as he/she walks with the White Cane, each block signifies there is an office or room located at that area. And in order to know which room was which is by counting the blocks. Block #3 is the Technology room, or Block #4 is where the kitchen’s at.  When you cross an extremely large block, that means you’re at an intersection where two hallways meet.

You get the idea (I hope).

At the first/initial breakfast, you’d receive your scheduled classes for the week. For this day (Monday), you’d have an instructor aiding you to each class so you’d know where it’s located.  For the rest of the week, the help to each class gradually decreased until you are independently getting around to each class, meal, and your room.

This is the ultimate goal for all the training at the School…to enable a visually impaired person to become as independent and self-reliant as possible.

There are generally three classes in the morning, and three classes in the afternoon (each session is one hour long where you meet one-on-one with the instructor) running from 8:30am until 4pm with a lunch-break at 11:45.

My schedule was as followed:

8:30 Daily Living Skills

9:30 Technology

10:45 Mobility

11:45 Lunch

1pm Adjustment

2pm Daily Living Skills

3pm Technology

I opted out of the rest while the other attendees participated in all areas.

Dinner (set up by the House Parent) usually began around 5:45pm. The rest of the evening was your own time.

The classes were great, but for me, I absolutely enjoyed the interaction with the people (both the instructors and peers).

The first time I attended here was in June 2016 where there were seven of us total. This time there were just 3 of us.

Harley was the youngest at age 26. She completely lost her vision two years prior due to diabetes. This was her first time here.

Jewel was the oldest at 53, and as local, she’s a frequent visitor. She’s in the process of losing her sight also due to diabetes.

And of course, there was me, right smacked in the middle.

The camaraderie between the three of us was awesome and inspiring.

Just what I sorely needed.

The days were intense but fast. When Friday came, I found I wasn’t really ready to head home.

I felt safe here. I felt like I mattered. And the people I hung with truly get me whereas my family struggled to do just that.

But, I’ve learned new skills, and have been introduced to new possibilities that I’m truly excited about and hope to bring to fruition soon.

 

 

 

 

 

First the Hill. Next the Mountain.

In about four days I will be heading in to the city to spend a week at the School for the Blind. It’s been two years since I was last there (or was it three?). I figured it was high time to had back for additional training and support.

ND Vision Services, Grand Forks

 

I’m sitting here, staring at the screen, and it sort of dawned on me that it’s been 27 years since the diagnosis that completely changed my life. I’ve spent so many years angry at myself, angry at the world, feeling sorry for myself instead of fighting back and pursuing my dreams inspite of this disease.

Regrets. Pain. Losses.

They have controlled my life for far too long.

I’m tired of my allowing this to dictate my every action (or inaction rather). I’m tired of feeling like a shut-in cut off from being able to get out there and interact with the world (instead of doing it all via internet even though that’s been really helpful).

The worst part about the past 27 years?

I allowed myself to just give up on everything.

It has taken me this long to come to this point of now wanting to get back out there, and even pursuing a few of the dreams I’d let go.

But, is it too late?

I’m not sure. What I am sure about is that sitting around at the house all day long will not get me anywhere.

So, here I go, trying to make the most of what I have left, and to see if I can finally get somewhere with my life.

School for the Blind

At the moment, I feel like I’m trying to run up a steep hill, unsure if I’ll be able to gain any kind of momentum. Will I reach the top, or will I run out of steam and have to turn back?

I am so full of fears and doubts about myself and my abilities. Yet, I know that life is precious, and time’s growing shorter by the day, I can’t allow myself to give up.

Not anymore.

I want to be someone that my son would be proud of. Someone I will no longer be ashamed of.

Sunday is the day I will head for the School. I hope to be able to update you all on what goes on during my week while there.

Fingers crossed on all accounts…

 

 

 

Ramblings and Current Happenings #Writerslife

For being nearly the middle of May, 2019 thus far has felt like a very l-o-n-g year.

With at least eight blizzards (between middle of January to early April) which kept us buried in several feet of snow, and then hubby was furloughed by the Federal gov’t for over 30 days, and then the near historic flooding of the Red River (thank goodness it was no where near the magnitude of the 1997 Flood, but bad enough)….

And even though it’s officially Spring, it still doesn’t feel like it up here.  Temp during the nights still bottom out in the upper 20s, and daytime highs rarely reach above 60…

Guess I am hoping for a nice change in the current pattern of things.

I’m ready for warm weather and lots of sunshine.  I’m also ready to get out of the house and interact with people.  These would be so good for my mental health as it has tanked in recent weeks.

Currently, I do have some potential outings coming up.  In early June, I will be spending one full week at the School for the Blind for their Adult Week (will go more in detail at a later posting).  The Fall will bring opportunities to fly out of state; one, to attend a Buffalo Bills’ game (either in Buffalo NY, or wherever we can score three affordable tickets), and second, with my hubby at one of his training sessions (San Antonio is a distinct possibility, or maybe even San Diego–yippee!).

The past several days I’ve been mulling over whether or not to apply to a few writers residencies. The one I am most interested in is at Hedgebrook -located on Whidbey Island (near Seattle).

I love my guys, but I need to spend some time away for a while and be me, the writer and mingle with other creatives who truly get me.  Now it’s a matter of sitting down and figuring out what my next project should be.  At this point, I know I want it to be a collection of essays; just have to decide on a theme.

Next week, I am hoping to check out a local writing group in Grand Forks, Northern Ink.

For me, a busy body makes for a healthier mindset.

Let’s roll.

Stepping Out of the Comfort Zone #Poetry #SpokenWord

Now that I’ve declared I was a poet (much more so than just a fiction writer), I decided to really put myself out there.

By recording poetry as “spoken word.”

This was a huge thing for me as I absolutely HATE the sound of my own voice. This mainly stem from a history of speech problems due to my hearing impairment.  So, after listening to other poets’ recording their poems, not to mention some hard-core loving encouragement from Susan Richardson, I took that leap.

Quiet was my very first attempt.  This poem was actually inspired by having listened to so many of Avi Kaplan’s music:

 

Once was a poem I wrote years ago, but it’s a story I feel is still very relevant today:

 

I may do more in the near future.

X Marks the Spot

Nearing the end of April, I find myself reading over the poems I’ve written for both NaPoWriMo and A to Z Challenge, and it kind of struck me how dark some of them sounded.

This must be me in some kind of funk (aka depression). The poem, Lonely, kind of nailed it on the head –

I sit at the window
And watch

As the world
Leaves me
Behind

This is exactly how I feel. Long story short, my hubby works long hours and travels out of state much of the time, and a son who’s busy with high school, sports, and hanging with his friends, so I am alone at home most of the time.

When I “retired” in 2015, I was looking forward to being home, and to be able to write without any time restraints. That same year we left the hectic city life that was Raleigh, NC and moved up to a farmstead just outside Grand Forks, it was just what I needed. I’d been battling anxiety which was steadily worsening and meds were not helping. With wide open spaces, I felt I was finally able to breathe.

Nearly four years later, anxiety is almost non-existent but depression is starting to take over my life. I mean, I am only in my 40s, and I feel I still have much to live for.

Everything that has happened to me, all the crap I went through, and the losses I’ve experienced, and they all come down to this—me, sitting at home, alone with just my laptop and nine cats.

I write, a lot. I interact with people via internet. But, I want more. I want to get back out into the world. I no longer want to hide and be left behind.

But, I am hampered with limitations of all kinds.

I don’t drive. There is public transportation but it’s limited to certain days and to certain places (none of where I’d love to go).

In the time I’ve lived here, I haven’t been able to establish any real friendships within the community (they tend to be quite “clicky” when it comes to “outsiders”).

Yet, with my hubby and son who practically can fend for themselves, I have no limit as to what I can do and where to go as far as time and availability. How do I narrow the chasm and break through to the other side?

As I sit here typing, there is a window next to the desk where I can watch birds pecking away on a pile of seeds my guys threw down weeks earlier, I am struck by how free they are to fly wherever they want yet they are limited. Limited by weather conditions and availability of food. These two determine where and when they fly. These limitations though do not seem to affect their attitude as they sing and flitter to and fro. Why? They take what they have in whatever condition things are and fly and sing anyway.

Yes, they have limitations but these do not stop them from being birds who still find ways to fly and sing to their little heart’s desire.

I want to do the same.

So, I will start with what I have and where I am at, and go from there. It’s time that I fly free regardless of my current limitations, and see where the sky leads me.

Mental Illness & Writing (My Story Part One)

“Being different and thinking differently make a person unforgettable.” –Suzy Kassem

My mental illness is definitely not something I generally like to talk about; however, it’s probably one of the main reasons why I write.

I saw this quote on the internet the other day, and it got me thinking about things.  Lots of things.

“No matter what we make, creativity always changes the creator.” -anonymous

Anyone who creates, whether you’re a photographer, musician, or writer (the list can go on and on), not only do you have the ability to change your own life through the act of creating, but other people’s lives as well.

How do creatives have such powerful impact?  One of the best answers I found was in this explanation:

“Art does not show people what to do, yet engaging with a good work of art can connect you to your senses, body, and mind. It can make the world felt. And this felt feeling may spur thinking, engagement, and even action.” -Olafur Eliasson, Why Art Has the Power To Change the World

To create is to connect. And in this day and age, we as the whole seemed to have lost the ability to truly connect with ourselves, to people, and to the world that surrounds us.

Is it a wonder to why we feel so lonely? So disconnected?

Yes, we have this thing called technology in abundance but it can NOT fully step into the role of the connector. While there is that feeling of being connected to someone on the other side of the digital barrier, it still feels artificial. Not real or alive.

On the other hand, creative arts have the ability to do just that.

Through music, paintings, sculptures, photographs, poetry, and on and on.  So, while art has the power to bring people together, it also has the power to heal especially for the creator (aka artist, songwriter, poet, etc…you get the idea).

How does art heal us?

Art and music affect every cell in the body instantly to create a healing physiology that changes the immune system and blood flow to all the organs. Art and Music also immediately change a person’s perceptions of their world. They change attitude, emotional state, and pain perception. They create hope and positivity and they help people cope with difficulties. They transform a person’s outlook and way of being in the world.” –How Art Heals-Mind/Body Physiology

Music has always been in my family especially on my mother’s side which yielded several musicians including an uncle who went on to play with an award-winning Native American-Folk band, December Wind.  As a girl, I can remember many occasions when family members gathered together at my Grandmother’s house for a “jam session” completed with guitars, banjo, fiddle, accordion, harmonica and even a set of spoons.  I was at an age where I was misunderstood (no one knew I was partially deaf until later) and music was something I understood. I’d sit on the floor, and “listened” to the beats and deep bass sounds for hours.

Although I loved music, I never learned to play an instrument (the desire was there though), I ended up singing in the school and church choirs for several years (I’d harmonized through the “beats” and reading music).

Since I couldn’t be a musician, I found myself drawn to words.  Words I also understood so I delved deep in the worlds created by words.  Here I connected with characters who became my friends since I had so few in the real world (byproduct of being “different”).  After accidentally discovering writing (the story behind this discovery can be found here), I’d took my favorite characters (Scooby Doo and Shaggy were among those) and created my own world with them in it.

Writing became a lifeline to the intense loneliness I’d felt.

When I was in college, I took to writing journals as a way of dealing with the stress and pressures that went with being a student living away from home.

In 1992, I stopped writing altogether.  This was the year I was diagnosed with Usher Syndrome (a form of Retinitis Pigmentosa-progressive blindness-which included hearing loss).

Depression really emerged at this point in my life though I was never diagnosed.  And when I married my first husband, Aaron, anger replaced everything else I was feeling and he bore, unfortunately, the brunt of it.  The depression and anger steadily grew worse over time, and then the worst happened.

He was killed in a car accident.

Grief and regrets overwhelmed me, and I nearly did the unthinkable.  I backed out just before it was too late as I realized that this would be the ultimate regret that I could never return from.  Worse of all, it would hurt my family as well as Aaron’s.

I just couldn’t do it.

Instead, I poured all my attention and strength into finishing college (which I did over a year after Aaron’s death). By this time, I’d moved out in my own apartment, but also had regressed from all social activities becoming a hermit with very little contact to the outside world.

Then Jay came into my life (actually he returned to my life, but that is another story of its own).  He changed everything by not only marrying me, but by reintroducing writing back into my life through a gift of a leather-bound journal.

In this journal, I spew all my anger and pain like vomit.  When the pages were all full, I closed the book and packed it away (even to this day I have not gone back to read it).

Now being emptied, the healing can begin.

(This is just part one of my story.  I plan to continue in the near future)

An Insecured Writer’s Rambles: Will My Writing Have Meaning?

 

*Note: Am participating in the #Write28Days (February) hosted by Anita Ojeda. Click here if you would like to participate.

 

Just celebrated a birthday last month. My 48th one. I’m finding it difficult to believe that I am almost the big 5-0 when most of the time my mind thinks I’m still in my 20’s.

Where on earth did the time go?

I can clearly remember my parents saying the same thing to me when they were in their 40’s.  The sad reality is, my father’s no longer with us. He passed away in 2014. He was only 67.

In my eyes, he was the true steward of God using his carpentry skills (he was so gifted with his hands especially in woodworking, crafting beautiful things) and his time for the church.  Those who knew my father always commented on how cheerful he was, all smiles and loved to whistle tunes from the 60’s as he worked.

Now, I’m looking at myself and wondering, what will people remember about me when I am gone from this earth? How have I used my talent/gift and time to reach others?

After a lifetime with disabilities (hearing and vision loss), I still struggle with my self-worth and whether my writing has any value (especially when most of what I write, both poetry and fiction, tend to be dark). It doesn’t help either when my husband and son think of my writing as just a “hobby” or “fantasy writing.”  And it also doesn’t help when my husband have discouraged me from ever publishing books since I am on disability benefits (there are other factors for his paranoia other than this one reason) when I have many, many stories and poetry within that I wish to share with the world.  So, I have resorted to having my short fiction and poetry published in non-paying zines a few times each year with the remaining items posted on this blog.

Is this me experiencing the dreaded “mid-life crisis?”  Is this me being vain as I worried if all that I’ve written will be lost forever once I am no longer here? How will people remember me? Just a woman who is so and so wife and mother?

I have been given this gift (writing) for a reason, and I don’t want to squander it.  So, no matter what, I will continue to write what’s on my heart and mind through whatever means I can find in the hope of reaching those who need reaching.

 

How Confident Are You (As A Writer)?

Pixabay

*Note: I’m participating in the #Write28Days (February) hosted by Anita Ojeda. Click here if you would like tp participate. 

 

So, really, how confident are you in yourself as a writer and in your writing abilities?

Personally, I can say without hesitation that I have very little confidence in myself as a writer, and many times this lack of confidence stops me from writing.

How sad is that?

What’s holding me back? What am I really afraid of?

Fear of failure? Of what others think about my stories and poems? Fear of success?

What???

The only answers that keep coming back to me are:

I need to write.  I need to tell my story-in my own way.  The price is too high NOT to write.

Again, what??? These tell me nothing about what I’m afraid of.

Then, another answer rings through my head:

My writing has to be perfect. If I can’t get it just right with the first try, why bother? I’ll never be good enough anyway.

Oh…yeah…this one cuts deep.  I keep going back to trying to be good at that one thing. It’s the search that never ends. It all goes back to my childhood when my (hearing) disability made me feel inferior to other normal kids (because they’d thought me strange because I spoke funny, or heard things incorrectly and they’d laugh at me, or called me “booby” when I acted clueless to what was going on around me, etc.). Or when I learned I was slowly losing my sight at the age of 21 just when I was beginning to get a feel of what I wanted for in a career, and this diagnosis shook my confidence, no, it destroyed it, and I gave up any and all aspirations.

On the other side, people who’ve known me for most if not all of my life would tell me how feisty I was when I was younger, how much harder I worked at something when the others believed I’d never be able to accomplish, and I’d do just that, how the guy who used to call me names found out one day he’d pushed me too far when I shove him against a wall with a hockey stick (he never bothered me again after that), and on and on.  My own mother said I was the strongest person she’d ever known, and how I was an inspiration to her.

Now, I look at the mirror and I can’t see that girl anymore.

Where did she go?

But, the real question is:

Will she ever return? Is it possible to become that girl again? 

I can’t help but  to feel so lost. How did I end up being this lost? But, is that necessarily a bad thing? A quote I read some time ago came back:

Sometimes the only way to ever find yourself is to get completely lost.” – Kellie Elmore

I feel there is truth to this quote. I also believe that the path to re-discovering myself will be through writing; and in writing, I believe I will regain my confidence.