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Stories From the Edge of Blindness

In 2002, Retinitis Pigmentosa changed my life. This is my story of a slow approach to darkness.

Month

March 2015

Finding the Right Library

It is mid March, and while the majority of the country is digging itself out of winter, we are having a massive heat wave in Los Angeles.  Nothing is ever linear here; L.A. is a fucked up city that crouches under the disintegrating wings of angels, trying to disguise its devilish underbelly.  But, you can find your haven if you have the patience to look for it.

A couple of months ago, I started going to the library with a friend of mine.  We are both writers and were suffering from what many writers suffer from; an inability to get any writing done at home.  For convenience, we started with a library that is walking distance from my house.  The fun began at the entrance, where a number of drunk and high locals were camped out smoking cigarettes and slurring come-ons to passers-by.  I had hopes that the inside of the library would prove to be a bit more peaceful, but no such luck.  All of the tables but one, were occupied by men and women in various states of consciousness and dress, who spread their treasure troves of possessions over chairs and on the floor around them. They clearly hadn’t been versed in library etiquette  and spoke in a volume that would have been more suited to a sporting event.  Despite the noise and the smell, we decided to stay and see if we could get any writing done; we stayed a couple of hours, but quickly left upon the arrival of a group of angry teens who seemed to be amping up for a fist fight.  We escaped out into the sweltering afternoon and agreed to look for another venue.

The second library we went to was a small, older establishment that sat quietly nestled in a Hollywood neighborhood.  The entrance was adorned with clean stone work and there wasn’t a drunk in sight or a lewd greeting to be heard.  The interior was cozy, with wooden tables and chairs that dipped and swayed with age.  It seemed the perfect place for children; shelves overflowing with dreams and the walls covered in children’s paper artwork.  We were two of about five patrons that afternoon and it was quiet, so we settled in to see if the creative juices would start flowing.  We gave it an hour or so and then meandered our way out the front door, exchanging pleasantries with the librarian at the reception desk.  It was a perfectly fine place, but not the right one.

A neighbor of mine had raved to me about a new library in West Hollywood, so we decided that we would head there for our next writing excursion.  It had not been over sold.  The library is gorgeous, with two huge floors of books and floor to ceiling windows that look out onto a park and the Pacific Design Center.  It has glass panelled study rooms and solid oak tables with modern lighting and outlets for laptops.  The children’s section is nestled on the first floor, away from the rest of the library in a space designed for the chaos that comes with kids. It is Los Angeles, so there are the regulars who converge in the morning, waiting with bags full of clothes and books; they rush in as the doors open and steal away to the corners they have claimed as their own.  There is the occasional grunter and wheezer who mutters under his breath and rocks to music that pours out from his headphones, the middle-aged shoeless napper who pretends to be reading a book and sometimes a person who spreads his belongings out over the edges of his side of the desk. But, it has become our library as well and we are hopeful that great things will be written there.

 

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Re- Emergence

It feels like hundreds of years since I have visited my own blog.  My bones should have become brittle and my hair stark white.  I will forever be in the waiting game, but this time, I return to this blog having been immersed in a different kind of writing and not simply buried under a rock.  I needed to step away from prose and wash myself again in the fragrance of poetry.  I have always been a poet, a writer, but for years I wasn’t writing.  I  struggled to stay afloat while trying to figure out how to be a disabled person.  I had no job, therefore I felt I had no value.

I began to define myself as a disabled person who couldn’t contribute and forgot that I exist beyond my blindness.  I allowed RP to steal my voice as well as my vision.  After my diagnosis, I dove into the darkness and forgot about all the light that remained; I immersed myself in the task of becoming a blind person and forgot to pay attention to my pulse and my dreams.

I remember being in a workshop at one of my former jobs where we were asked to list words to define ourselves.  If I had been asked to do that after I stopped working, I know the first word on my list would have been blind. Now, although blind will always be on the list, it no longer stands alone.  I am wife, writer, friend, daughter, pug fanatic, and going blind.

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