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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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.

 

 

 

 

 

The Night Is My Friend; The Darkness Is Not

 

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

 

While growing up, nighttime used to be my favorite time.

I remember playing tag-in-the-dark with friends during the Wednesday’s youth group. Or, sledding down the hills behind our house- never mind the fence of stones waiting near the bottom.  I remember camping in the pop-up out in our backyard-the full moon made it clear as the day.

There were nights when I used to sneak out of the house and wandered down the road, to the mighty rapids, and sat on the rocks, under the rays of the moon. The sound of the water roaring against the bedrock always reminded me that nature can be a great healer.

My imagination would come alive as soon as the sun set, and the stars revealed themselves through their shimmering glory.

But, at some point in my latter teenage years, a veil came over and hid all the beauty of the night. Without any warning, darkness crept in and I’d soon learned its name which forever changed my life.

It’s been a few decades now, and I still enjoy the night, but it’s no longer the same; not since the darkness invaded, and had grown considerably since.

I may be losing my sight, but I will always have the memories of my time spent in the night.  All I need to do is close my eyes, and I’m back in the outdoors gazing up at those countless beautiful stars.

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.

#IWSG A Rainy Day For This Writer

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

 

This month’s question: When your writing life is a bit cloudy or filled with rain, what do you do to dig down and keep on writing?

 

Photo Credit: Alexander Tayson

 

I’m experiencing this weather phenomenon right now.  If you look out my window, you’ll see the partially bare ground laced with dirty snow.   The air is frigid as the arctic breeze sweep through the barren trees that pepper our farmstead.

It’s April, but winter is sticking around.

I’ve been cooped up indoors for months.  I leave the house only once a week for grocery shopping, and that’s it.

No fresh air.  No real exercise (the treadmill only goes so far).

Depression is settling in heavy, and affecting my writing life.

With several projects lined up to be worked on, all I’ve done is watch medical dramas on Hulu.

I feel the dark clouds billowing over my head as I ignore the jabbering of characters in my mind.   Rain comes in form of tears as the frustration (with myself) grows.

I must find a way to jump-start my writing.

Writing is my sun.  My fresh air.

But right now, the storm clouds are winning.

Bottomline, the problem is I’m a writer with very little outside contact (other than family members).  No one to spur me on with a pep talk or encouragement.  Being a shut-in (self imposed), there is no one to blame for my predicament other than myself.

Granted, I can’t just hop in a car and drive because of my blindness.

However…

There is this lovely thing called technology that allows one to keep connected with people from all walks of life.  This for me has been a blessing.

So, instead of wallowing in self-pity, I’m here, blogging, and in essence, writing which is all the kick in the pants I need for the clouds to roll back, and allow the sun to peek through.

 


 

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. 

The Dawning (Day One) Part One

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(*Note: In continuation to the Dusk (Arrival at the School for the Blind) post)

 

Day One

The first full day is done.  It was a good one, I think. Had three one-hour classes in the morning; and three one-hour classes in the afternoon.  My schedule will be the same for the rest of the week. One of the Vision Specialists made sure we were awake by 7:15am by knocking on each of our doors.  Breakfast was held in the kitchen/small dining area on the other side of the building from 8 till 8:30.  Since each one of the residents have varying degrees of visual loss and this was our first day,  Amy (one of the Visual Specialists) led us down a few different hallways to the kitchen/dining room area (also labeled as Daily Living Skills Center). Here we ate cereals and toasts.  It was a fairly quiet meal as we didn’t know each other.  I could sense that I wasn’t the only one feeling anxious about being here at the School.

My first class began at 8:30 with Ken (Daily Living Skills Specialist) so I stayed in the kitchen/dining area.  We just went over tidbits in regards to kitchen skills (which areas I like to work on throughout the week.  Guess I’ll be getting some cooking in too).  At 9:30 I met with Margo (Mobility Specialist).  She took me into an office and we discussed various aspects of mobility and the cane (I brought my own but have never used).  She took me out to a particular (long and wide) hallway and went over the basics of holding on the cane, and tips on how to use it.

parts of walking cane

 

For about 1/2 hour, I walked up and down this corridor, swinging the cane side to side (tip must always stay in contact to the surface), while Margo watched.  Every once in a while she’ll correct my form.

Today I didn’t have a 10:30 class (Specialist had a previous appointed event to attend) so I went to my room, and rested.

At 11:30 I headed back to the kitchen/dining area for lunch.  Again, we were quiet as we ate.

12:30 was a group meeting in a conference room.  From there I went to my 1pm class with the Technology Specialist, Tracey.  She showed me a little about various accessibility functions on a desktop computer (mainly Windows).  2pm I headed back to the kitchen/dining area for my second Daily Living Skills class with Amy.  I had the joy of preparing sliced potatoes and ham for supper.  Nah, it wasn’t that bad at all 🙂  At 3pm, I met with Candy at the Braille Center.  I learned what the alphabets A and B look like.  Oh man, this is like learning a totally new language!  The entire Braille language is based on these 6 dots.  See below:

braille letter z

 

“The braille alphabet is based upon a “cell” that is composed of 6 dots, arranged in two columns of 3 dots each. Each braille letter of the alphabet or other symbol, such as a comma, is formed by using one or more of the 6 dots that are contained in the braille cell. The chart below provides a good example of the design of the braille alphabet.”

braille dots

 

(Courtesy of Vision Aware)

 

Whew…am feeling exhausted after my first full day here; but, in a good way.  Margo told me that I am to be using the cane the entire time I’m here; meaning it has to stay “attached” to me no matter what.  I told her that I would.  Using the cane still makes me quite nervous (self-conscious is probably a better word); but, I think I’m getting a little more comfortable with it (better than earlier today anyway).

The others are a good group of people: Tara, Rosalinda (aka Linda), Marlene, David and Sarnoe.  Several of the Vision Specialists are vision impaired themselves.  I’m quite impressed.

There’s a level of comfort being here. I don’t have to constantly feel like I have to make an excuse for my “clumsiness;” or wonder what the others think of me as a “blind” person.  The other residents know. They understand and can completely relate.  I don’t feel so alone anymore.

Yet…I still feel quite a bit of hesitancy and uncertainty.  Not 100% sure why.

Tomorrow I’m supposed to bake banana bread.  Oh, boy…

 

Stay tuned…

 

 

 

Fighting the Darkness

bare land

 

For a long time, I viewed my disabilities as weaknesses; and considered myself to be inferior to other able-bodied individuals.  I felt that by “accepting” my disabilities meant I was giving in to them.

So, anger settled in.

Instead of feeling propelled to do great things, I opted to feel sorry for myself and gave up on my dreams.

Years passed.  Regrets mounted.  Misery and loneliness hung on me like thick furs on a hot, muggy summer day.

Suffocating me ever so slowly.

Anxiety and depression visited intermittently until they decided to move in on a more permanent basis.  It got so bad I couldn’t step outside of my own home without having an episode.

I realized that I couldn’t go on living like this.

Something had to change.

It wasn’t too long after we moved to North Dakota when I learned there was a School for the Blind in Grand Forks (a short 45-minute drive from home); and that they offered Adult Weeks just about every quarter.  Pam, my Vision Services Specialist, encouraged me to come in March.  I had every intention of attending, but “chickened” out at the last moment.   She then encouraged me to attend one during the first week of June.

I actually went.

Finally.

 

*Will talk about my week at the School for the Blind in my next post.

 

 

A Step Forward (Hopefully)

steps

 

Just a quick post to let my faithful readers know that I’m going out-of-town next week, and to expect the next new post to come by June 15th.

This trip is NOT a vacation; it’s something that I’ve been “dreading” to do and have already postponed it once.  It’s a step forward for me as I’m attempting to face some of my fears head on in regards to my progressive vision loss.

I hope to share more on this when I return.

Happy writing (and reading) everyone!