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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.

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Disability

“Things My Mother Left Behind” Available for Pre-Order

I am sitting in my very quiet writing space, typing this in a state of simultaneous disbelief and total joy. I am thrilled beyond the sky to announce that my book, “Things My Mother Left Behind”, is available for pre-order, on Amazon. This is a life long dream come true for me, and I will be forever grateful to River Dixon; an amazing writer, publisher extraordinaire and founder of the incredible Potter’s Grove Press.


To pre-order the ebook version of “Things My Mother Left Behind” you can go here. To visit my Amazon Authors Page, you can go here. To explore the beautiful and diverse catalog from Potter’s Grove Press, you can go here.

I am so grateful for all of the love and support I have received from this incredible community over the years; it has given me a sense of courage I never thought I would feel, and helped a life long dream become reality.

Zelda, Persephone and Maud

When I started writing my blog, it was going to be a story solely about blindness, but as the years have progressed, I have discovered that the story of my blindness is the part that weaves itself into the whole, but isn’t the only thread that gives meaning. With this realization my blog has become about a life with blindness, rather than a life of blindness. Blindness makes my life more challenging, but it isn’t all of me; it often decides my fate, but it doesn’t define me.  It leads me to places I never imagined and to the rediscovery of places I had thought forever lost.  Blindness has brought friendships and community into my life in such fulfilling and sustaining ways, and it has allowed me to work through things I believed insurmountable.  But there is one battle I just can’t seem to win, the battle of Zelda. 

If you are acquainted with my blog, then you may remember Zelda, the thorn in my eye who I tried to see as a savior, but let’s just say it was a struggle to get clarity, and continues to be a struggle.  For those of you who don’t know or remember her, Zelda is my white cane.  I wrote a whole series of posts about my early days with Zelda during my O&M lessons, if you are interested in reading a bit about her background.  

So, forward almost three years, and the truth is that Zelda has rarely seen the light of day.  It’s sad really, given that she was supposed to bring some light into my hands and help guide my way over the precarious streets in this city of questionable angels, but I just can’t make peace with her, no matter how many times I trip or fall, no matter how clear it is that I need her.  

I stashed her at the bottom of a bag, which I put in another bag, which I put at the back of a high shelf in my closet,  in an attempt to forget about her, but the bruises seem to fade much more slowly as I get older, sitting on my skin as a reminder that I am not safe. My husband will periodically mention Zelda, ask where she is and if I might try her out again.  I know he worries about me.  I tell him I don’t want to be the blind wife.  I don’t want him to feel ashamed or embarrassed.  I tell him I wish I could be less broken, feel more like a partner and less like a burden.  

I do recognize that I need Zelda, so I started to think about what it is that bothers me about her.  The reasons are many and complicated, but one tangible thing is that I find her to be way too tall.  So, I decided to try out some shorter canes.  I am just over five feet tall, and although my O&M teacher was a fan of a taller cane, I never felt comfortable with Zelda’s height.  So, enter into the picture, Persephone of medium height, and Maud who is short and round, just like me.  I don’t know if the shorter canes will help me feel more comfortable, but I do know that I have to try something.  The thing is, the virus took over just when they arrived, and now we are all at home together for the foreseeable future. When the stay at home order is lifted, I just might go outside and give them a whirl.  

Blind in the Time of the Virus

It seems like ages since I have written about blindness.  It feels so small, so insignificant compared to what the world is facing, but regardless of its weight in a moment or hour or day, blindness is always with me.  Blindness won’t be ignored or cajoled away.  It makes everything I do more challenging, and even in this time of global crisis, blindness refuses to sit quietly. 

There was an incident recently, on the stairs, that I told Joe is a perfect physical manifestation of how my mind works.  I hurt my knee and was walking up the stairs, very slowly, after helping walk the dogs for the first time in a while. I am trying to use my knee to get it back into working shape.  I was close to the top of the stairs when it started to give out, so I grabbed the railing for support.  My arm is also injured, so when I grabbed the railing, the pain shot through my shoulder and down to my wrist so intensely, I started crying and couldn’t hold on.  I was wearing a mask, which is an impediment to my already impaired vision, and breathing heavy with tears, so my sun glasses fogged up and I couldn’t see anything, and then my aging body decided that it was the perfect time for a hot flash.  And oh yeah, there is this virus thing that is killing people all over the planet, so I was trying desperately not to touch anything and get to the hand sanitizer so the virus couldn’t get in the house.  If this is the physical manifestation of how my mind works, no wonder I am nuts.  The truth is that it was painful and terrifying and I felt so incredibly helpless, but it also made me reflect on how lucky I am. 

It has been a challenging time, but regardless of whatever challenges I face, I know that I am lucky.  I am lucky to have a home to shelter in and an incredible husband to shelter with. I am lucky to be cared for and nursed through the injuries that come from being partially sighted, (and sometimes just clumsy and old). I am lucky to have neighbors who rally together during times of crisis.  I am lucky to live in California where our Governor and mayors are doing the work to protect us and stop the spread of the virus.  I am lucky to be able to read and write and feel the support of people around the world. I am lucky that people take the time to read what I write, that I have an actual book coming out into the world.   I am lucky to have family and friends and so much love in my life. So, yes, I am blind and broken, I am the chaos on the stairs, but I am also incredibly fortunate and grateful.   

Shards of Cherry Blossoms

My recorded poetry series continues with the fifth of six poems originally published in Chantarelle’s Notebook. If you have a minute and are so inclined, check out my YouTube page and subscribe!!!!


Untethered

I was in the car with my husband yesterday, Thomson Twins jangling in the background, when I started to think of what it means to be untethered.  I am parentless, floating without the anchors that rooted my bones to the earth, my blood to the sky. My identity was already fractured, unstable at best, but now I become the definition of loss each time I open my eyes to inhale the sun, each time I close them again to swallow the moon.  I have been emptied out so many times, turning to the memory of voices that fade with the passing of years.  I became old when I should have been steeped in youth, threw my eyes into the grave, forgot how to look to the sky for solace, for discovery.  I am recognized by the shape of my diseases, ailments that strangle my determination, but I don’t recognize my own face. I am the word on the page that erases itself but never stops searching for sound. I am a war, a need to be invisible and seen, to be silence and noise. Is this what it means to be untethered?

From the Quiet comes Poetry

Everything is so quiet and so very loud. Each step I take is labored, heavy and uncertain. I haven’t written much at all this year, or submitted or had much published, but today I opened my email to a lovely surprise. Issue 3 of Orange Blossom Review came out yesterday, and I am honored to have one of my poems in its virtual pages, amongst the work of so many talented writers. If you want to take a peek at the issue, you can so here.

Best Eye Appointment Ever

The title of this post may be a tad misleading.  The best eye appointment would either be Dr. Sarraf telling me it has all been a dream and I don’t actually have RP, or Dr. Sarraf giving me a pill that would cure the RP and completely restore my sight.  Given the fact that those two things are pretty unlikely……it was definitely the best eye appointment ever. Continue reading “Best Eye Appointment Ever”

Once a Year

Tomorrow is my annual appointment with the retinal specialist.  I used to suffer from at least a week of anxiety and fear leading up to the appointment, but I have been through it so many times, I now start getting anxious about it just the day before.  I suppose I am lucky that I only have to go once a year, given that there is no treatment for my disease(that isn’t so lucky), but the day is always long, painful and exhausting. Continue reading “Once a Year”

An Unpopular View

I was going to work on my newest venture of writing fiction (thanks to my wonderful friend and mentor, Bryan) and send out some poetry submissions this morning, but then I entered the WP world and read a few different posts, from others in the Blind/VI community, about the  #Birdbox challenge, and I felt compelled to respond with a post of my own. Continue reading “An Unpopular View”

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