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.

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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!

 

Life’s Battles and Writing

It’s so easy to let life in general stop you from writing or even reading.  Distractions from the home front (especially if you have children) and/or the work front abound in every corner.  They sap your time and energy.

But, what if you’re also dealing with other things that not everybody goes through?  A child with a life-threatening illness, or even your own?  A progressive disorder that’s causing you to lose one or more of your body’s abilities?  How do you cope with these and find the energy and time to write or read?  Do you even want to?

As an artist, I believe it would be even more important to continue with your creative endeavors.  But, I can only speak from my own personal experience.

I’m going blind.   Over time, I’m finding it increasingly difficult to read and write.  Depression assaults me constantly, and I’d stop doing everything which only makes me feel worse.  Misery would grow ’till I break down and write (or read) something, anything; only then do I find relief from the pain however temporary.

I’ve come to realize that I need to create, no matter what.  Even if  I completely lose my sight.  I must find a way to continue writing (and reading); else life would lose its value.

And I can’t allow that to happen.