story of determination

My family moved to Kent when I was a tiny baby. I attended
Longcoy Elementary school, Davey Jr. High School and Roosevelt
high school.

Then I went to Kent State University. After graduation, I moved
to Maryland, where I lived for ten years.

I returned to Kent when my son, Joseph, was five years old. He
attended Longcoy Elementary school, Stanton Middle School and now
he's a senior at Roosevelt. Next year he'll start classes at Kent
State.

Life in a small town runs in circles, one generation after the
next. Some day I'll die in Kent, and that's good enough for me. I
love this city.

Most people assume I was born DeafBlind. I wasn't. I was just
like any other baby, only extra cute with ringlets of black
curls. My parents had no clue that things would change.

It started when my oldest brother Tony was in sixth grade, and I
was in first grade. He got hi in the eye with a pencil. While
treating the injury, doctors discovered he had Retinitis
Pigmentosa (RP). This meant he was losing his peripheral vision
and had trouble seeing in the dark.

I was diagnosed with a mild hearing loss when I was 13. The
doctors said it wouldn't get worse. It did. They said hearing
aids would help. They didn't.

I was told I was "being a teenager." They said I was lazy, vain
and didn't want to look different from other kids. They were
wrong.

I was diagnosed with RP at 16. Like Tony, I had severe tunnel
vision and night blindness. Unlike me, his hearing was normal.
That was always hard to understand.

Both my hearing and vision loss were invisible disabilities. Most
people knew I had a hearing problem. Few knew about my vision
loss. I tried so hard to appear normal, but it was impossible. I
couldn't hear, I couldn't see much. I misunderstood people. I
stumbled over things every day.

High school was the worst. I wasn't in special education. I
didn't have an IEP. Teachers were told not to call on me. Some
never spoke to me at all.

I sat in class, unable to hear my teachers. I failed tests I
didn't know about, got zeroes on assignments I didn't know about.
I was being punished for being deaf and believed I deserved it.

Sign language would have helped, but I wasn't allowed to learn
it. The professionals insisted I would stop listening if I knew
sign language. What they didn't seem to understand was that I
couldn't hear. No, those days were not good.

In Maryland, I had a husband, house, teaching career and, later,
a baby. Not many people knew the stress I was facing with a new
baby, abusive husband, controlling mother-in-law and
discrimination at work.

There are a few theories on why my disabilities worsened. I
believe stress caused a genetic flare-up. Joseph was only six
months old. I rapidly lost all vision and hearing, as well as
feeling in my feet, legs and hands. I couldn't walk or feed
myself. People had to lift me onto a potty chair. They used their
finger like a pencil to print letters on my face. Plus, I was in
so much pain, like pins and needles but much worse. All that
loss, and I was in constant pain

I healed some. I can hear sounds with two cochlear implants. I
can walk with a fore-arm crutch and sighted guide, but my feet
are still paralyzed. Thank goodness my hands healed. I finally
learned sign language, and braille. I love being able to read
again.

throughout all of this, all of those years, no one could say what
was wrong with me. We got one diagnosis after another, all of
them wrong.

Poor Tony couldn't cope He committed suicide 11 years ago, and we
still didn't know what caused our disabilities.

We finally got answers in 2011. My blood tested positive for a
super-rare genetic disorder called PHARC. That stands for
polyneuropathy, hearing loss, ataxia, RP and cataracts. About 50
people world-wide have been diagnosed with this disorder.

Life goes on, and I do the best I can. The wonders of technology
have given me a voice I make it a powerful voice through my
writing and speaking engagements. This is a story that needs to
be told. My book, Through the Tunnel: Becoming DeafBlind, is the
story of my life told in prose poetry and short narratives. You
get to sample a bit from each stage of my life: weird tomboy,
junior high princess, sad, lonely teenager and as an adult,
caught in a web of disabilities and abuse. It is a dark story,
yet there is humor and hope. Most of all, it's the story of
determination.


Happy Release day! The book is officially on the market. Order
now from Handtype Press.

Through the Tunnel: Becoming DeafBlind

by Angie C. Orlando.

http://handtype.com/books/throughthetunnel/index.html

Permission is granted to share

Angie C. Orlando

November 2018