Stories From the Edge of Blindness

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



Carrie Ann Golden’s Interview Series

I am thrilled and honored to have been asked to be a part of Carrie Ann Golden’s Interview Series. Carrie Ann did a guest post here on my blog and I adore her and her writing. This truly is an incredible community and I am so grateful to be a part of it. If you are interested in reading the interview, you can so so here.

Angela’s Heart Breathings

During my time in this amazing virtual community, I have had the pleasure of reading some extraordinary poetry, from poets all over the globe.  There is no way I could honor all of them in just a month, but I want to dedicate some of National Poetry Month to the poets whose work I found through the blogging world.

Angela has a story somewhat similar to my own.  She wrote when she was younger, and then life happened and she stepped away from the page, but has now returned.  I am so glad she has.  She tells it better than I do:

“About four years ago, I began the process of unbecoming, of shedding the layers of expectation. Of getting lost so I could be found, of asking the right questions so I could find comfort in the being lost. Of just being me.”

Continue reading “Angela’s Heart Breathings”

The Goodness of People

I was trying to keep to a self enforced schedule of posting on Sundays and Wednesdays, but this is a weird week for me, so here I am on a Tuesday. And, this post may be a bit all over the place.

January is typically a rough month for me. The 2nd is the anniversary of my Mom’s death and at some point every January, I see my retinal specialist; this year, it is today.  These are, and will remain, difficult things for me, but this year, I came into January feeling more positive and less full of dread.  Yesterday, I read an important piece by, “A Gypsy’s Tale“, and it helped me see that the reason I am feeling different this year is due, in large part, to the goodness of others.  I hope you will take the time to read her extraordinary post.

Every year, when I see Dr. Sarraf, I go with some anxiety.  For a number of years, I went to see him and he told me (always with great enthusiasm) that my vision was stable.  I felt incredibly lucky, but began to expect the news; last year, he told me that my vision had deteriorated.  It may sound a bit nuts that I have to be told whether or not my vision has gotten worse, but it is actually really hard to tell.  RP progresses pretty slowly (in my case anyway) and there have been years when I was convinced it had gotten worse when it hadn’t, and years I thought it was stable and it wasn’t.  Basically, you don’t know what you aren’t seeing because you can’t see it.  For years, I thought I was seeing normally and it turned out I had this crazy disease and was going blind.  Anyway, I digress.

Today, I am anxious, but ready for whatever he may tell me and feeling fortunate for all of the love, support, kindness and goodness that I receive from others.  I feel fortunate to be a part of an extraordinary community of kind, caring and intelligent people. I feel fortunate to have a doctor like Dr. Sarraf and to be able to go to one of the best eye institutes in the country.  I feel grateful for the vision I still have.

Todays visit will also be different because I am going to talk to Dr. Sarraf about genetic research.  My tendency has been to keep myself away from news about the research on retinal disease; I followed it in the beginning, but it felt as if I was being given false hope over and over again, and at the end of the day, I still had RP and had to learn to live with it.  Recently, there has been a lot in the news about a new FDA approved gene therapy that treats retinal dystrophy (basically, deterioration of the retina), but that term is a huge umbrella over a multitude of genetic mutations.  It may sound nuts, but when I heard the news, I wasn’t excited; I took it in stride, but my step mom read about it and got all excited and saved the article for me and  insisted I talk to Dr. Sarraf.  It is hard for her to understand that I don’t really want to know about the research, that all of these years, I have been living with RP and trying to accept the reality of my vision and how that impacts my life; but, this was the first time she has ever talked to me about RP (it can be easy to ignore – that is another post for another time), and I was touched by her enthusiasm.

So, today I will talk to Dr. Sarraf about genetics and ask him to refer me for genetic testing. I am stepping onto a new path in my RP journey, but I am curious and open to learning more and it is probably about time.


Vigor in my Stride

I have often lived on the darker side of things, turned toward sadness and despair, wrapped myself in a cloak of sorrow.  I know that this way of living and thinking is simply part of the way I am made, but as the year ends, I find myself reflecting on the light more than the darkness.

As I approach the last year of my 40’s, I am feeling the vigor in my stride.  2017 has been a year of awakening.  I have begun a new phase in my RP journey, and although it has been challenging,  I found the strength to face the changes in my identity as a blind person.  With Zelda (my white cane), I took a new path and I am heading to a place of acceptance.

I have also, finally, stepped fully into my writing shoes.  For years, I called myself a writer, but I wasn’t writing.  This year, my writing took flight; it isn’t that I spent the year writing masterpiece after masterpiece, it is that I dedicated my creative and emotional self to a writing life.  I write every day and in the act of writing I have truly become a writer.  The words have always been there, but now they have been sparked and have come to life in ways that continually surprise me.

When I started “Stories from the Edge of Blindness”, many years ago, I kept myself isolated and wrote only the occasional post.  I didn’t really participate in the blogging world, until this year.  I am immensely grateful to have found an amazing and supportive community of writers from all over the world.  I have discovered so many talented writers through the blogging community and learned so much from the stories those writers share. Being a part of such a diverse community is illuminating and inspiring; it is a true gift.

As I write this, I look around at my apartment, at all the signs of the wonderful life I have with my husband, at the pugs and the cats sleeping comfortably; I sink into the quiet spaces of the morning and I know that I am incredibly lucky.  I am not thinking about what I don’t have or what I haven’t done, but about how full my life is. Rather than longing to put 2017 behind me, or shrug it off as yet another year of failures, I approach its end feeling grateful and energized.  I am so thankful for all of the glorious, complicated, challenging and amazing things this year has given, and excited about what 2018 will bring.

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