Stories From the Edge of Blindness

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


September 2012

Thoughts of Returning to Work

I have been “retired”, as my husband calls it, for a little over three years and on disability for almost as long.  I admit the transition to the retired life has been hard for me.  In my working life, I was a Human Resources Manager in a not for profit organization; I made pretty decent cabbage and more importantly I really enjoyed all the human interactions.  Working in HR was sort of perfect for me because I truly love how unique every person is and hearing all the stories of people’s lives day after day also spoke to the writer in me.  I liked feeling trusted and respected and all the human contact brought me out of my head and into the world.

After my RP diagnosis, I knew that I would eventually have to stop working and initially I thought of it as a way to be free from the grind; but I thought I would have more time in the working world that I actually had.  The last four years of my working life, I noticed the changes in my vision becoming more of an obstacle to almost all of my daily tasks.  For the most part I tried to ignore the signs and just plod along, but the result was a level of exhaustion I had never experienced and evenings in agony from the pain in my eyes after having spent hours at a computer under fluorescent lighting.  I went the route of making changes in my environment, but there is only so much an employer can and is willing to do and then, of course, there are the endless questions from employees.  It all became far too much to bear and I knew the time had come for me to stop working.

I thought that retirement would be a time of freedom and creativity.  I imagined myself taking advantage of all the hours of the day in which I could write and crochet and do what I wanted to do, knowing that I could take a break and  rest my eyes when I needed to.  Instead, I found myself alone at home feeling stuck and utterly useless.  I started eating out of boredom and wiling away the hours feeling as if I was being a bad girl because I wasn’t at work. I didn’t know what to do with myself.  I avoided going outside because of the heat and the sun and there was nothing to go outside for because I had nowhere to go.  I no longer had a paycheck so I couldn’t go shopping or take myself out to lunch.  I felt like a fat blind lump with no purpose and no direction.  What had happened to the fabulous writer I had created in my imagination?  Where had the enthusiasm for embracing this new phase of life gone?  Perhaps the woman and the excitement were disappearing along with my vision.

I think I stopped feeling like a person because I felt like I was being irresponsible by not working and not doing my part in my marriage and in the world.  I felt resentful at having been saddled with RP and all the limitations that come with it.  I didn’t become one of those, “I can conquer the world” people; I became a nothing, a blank slate, a blob.  Or at least that is how I felt.

I was punishing myself for not being “normal” or not being able to do “normal things” anymore.  I missed days out at the mall and the freedom of living within the hum of the world; I missed what I had grown accustomed to in all the years of my seeing and working life. I missed the old me and I was having a hard time getting excited about finding a new me.  The truth is, in the quiet of  this new phase in my life, I saw a woman without purpose or a voice and I didn’t like her very much.  I wanted to scream and let my old voice out, but there was only silence.  Somewhere along the way, I had lost my shape and my substance.  I had no idea who I was.

Now, all these years later, I am still struggling with the acceptance of retirement; still trying to get myself motivated to write and be more productive.  I still sometimes feel like I should go back to work; but then I will venture out to the market 5 blocks from my apartment and come home with burning eyes from being outside for even 20 minutes. I still feel as if I am searching for some purpose and a renewed sense of self.  The difference is that I know I am on the path to finding out who I will become in this new phase of my life and I have hope that when I find her, I will like her.



Self Promotion for a Good Cause

In an earlier post, I wrote about an event sponsored by the Foundation Fighting Blindness called Vision Walk.  I also posted, a while back, about my Etsy shop.  Well, I thought I would mesh the two and see if I could get some money for the foundation through my creative work.  So, from now until October 21, 15% of all the proceeds from my Etsy Shop, FloweringInk Plays With Yarn, will go to the Los Angeles Vision Walk. I figured it would be a great way for people to start their holiday shopping; get some cool and affordable hand-made gifts and give money to a really good cause, all in one go.

I really do believe in the work that the FFB does and I think there will be treatment for RP in my lifetime.  I, for one, think it would be pretty damn great to be able to see the world, around me literally, again.


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