Susan’s story is an inspiration. When I discovered her blog, I was immediately struck by her poetry that is beautiful and moving. While I never considered myself a huge poetry fan, I’ve long admired poets because they paint pictures and elicit emotions with an economy of words that is impressive. I was also intrigued, amazed actually, by the presumption that she was totally blind, and could craft such wonderful art. I soon learned that Susan in not completely sightless, but that that doesn’t make what she does any less impressive. I admire her perseverance and tenacity.
If you enjoy poetry, please visit https://floweringink.wordpress.com
And if you don’t, visit the site anyway. If you’re like me you will be instantly converted.
Thank you Susan.
I discovered Steve’s blog through another blogger, and when I began to read Steve’s posts, I felt through his words a succinct determination, gentle honesty and a real desire to help others. I find all of this incredibly admirable, and as I read more, I found his humor and strength and an atmosphere of camaraderie. It was an incredible honor to me when he started to read my blog and then invited me to write a guest post for his.
I can’t deny I am a bit nervous to be a guest here, but more than that I am excited to have been asked.
I am a poet and a writer. I am married to an Irishman, and we have 2 pugs and 2 cats. We live in Hollywood, surrounded by an array of interesting characters that often appear in my poems and stories. I also have a degenerative retinal disease called Retinitis Pigmentosa. I am going blind.
I grappled with what to write about for this post. RP seemed an obvious thing, but it doesn’t stand alone. It isn’t something I hold at arms-length and look at objectively. It doesn’t define me, but it is part of me. It has become a constant pattern in the fabric of my life, one I didn’t choose and never would have chosen, but one that is indelibly tattooed on my existence.
On the day of my diagnosis, my life changed. RP crept beneath my skin. I couldn’t deny it or shrug it off; it was here to stay and I had a choice to either let it destroy me, or to accept the reality of it and figure out how blindness was going to mesh with my life. It was to be a long and harrowing path littered with obstacles, both literal and figurative. I felt like my identity had been shattered and I was tasked with finding the pieces and creating something new from them. I began the journey of learning to become a blind person. Or at least that’s what I thought at the time.
The first 7 years after my diagnosis, I continued to work as a Human Resources Manager, struggling to cope with my disease, while keeping it a secret. During those 7 years, I came home almost every day, exhausted from over use of my eyes and unable to do anything but lie on the couch, in the dark, because I was in so much pain. At the time of my diagnosis, I had 50 degrees of peripheral vision (This diagram is a good example of the human visual field), at the end of those 7 years, I had 25 degrees; I had lost half of my remaining vision. I decided to stop working.
At the time of my retirement (as my husband calls it), I had the grandiose idea that I was going to write full time. From a very early age, I had a dream of being a writer. I had always felt like a writer, even declared myself a writer, but the writing itself was inconsistent, at best. I had a few poems published in my early 20’s, but life pulled me under its wheels and my writing voice turned into a whisper. I was a writer who didn’t write. That would remain the case for some years.
When I stopped working, it became clear that I hadn’t really dealt with my RP. I hadn’t allowed myself the time, and suddenly, I had nothing but time. I decided I was going to write a book, that writing would be the best way to figure out how to piece together the identity of a visually impaired woman. Day after day, I sat down at the computer and nothing happened. I couldn’t feel my voice. I had no idea who I was. It was as if everything I had been before RP had gotten demolished by the looming presence of a disease I couldn’t face.
In an attempt to get motivated about the book, I started my blog. My posts were few and very far between. I wasn’t looking at myself from a writer’s perspective, I was looking at myself from a blind perspective. I was no longer a writer, I was a blind woman trying to write because I felt I had no purpose; I became weighed down by feeling empty and lost myself in the process. I felt like a failure and a fraud. Then, an old friend of mine made a suggestion that changed my life. She told me to step away from the blog and go back to what first made me fall in love with writing. I followed her advice and fell back into the arms of poetry.
I felt my voice return and my passion for language resurface. I remembered why I had always dreamed of a writing life, why I had fallen in love with words. I felt my pulse flow onto the page. I was able to write about RP, to face the reality of it with what felt like a brutally beautiful honesty. I wrote about blindness. I wrote about my family and my neighborhood and the world around me. In the return to writing poetry, I rediscovered my passion and it made me feel braver. I returned to the blog and started posting regularly. I found a writing community that is generous and inspiring. I started sending my poems to journals and magazines and I started getting published again. It was a true awakening.
It turned out the journey wasn’t one of becoming a blind person, it was one of becoming myself, but I can’t deny that RP played a significant role in leading me back to writing and helping me write into an identity that had been lost. RP isn’t something that I have and it isn’t something that has me. Like being a writer, it is simply a part of who I am.