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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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Missing the Dead

I am absolutely thrilled that my first acceptance from a journal this year came from Nine Muses Poetry, a journal that has published so many of the contemporary writers I admire. My huge thanks to editor Annest Gwilym for including my poem as part of this month’s Special Challenge. If you would like to read it, you can so so here.

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.   

My Husband is a Genius

I am super excited!  I have a WEBSITE, an actual website with pictures and everything!  I feel like a real grown up writer, and the best part of it is that my husband, Joe, imagined, designed and created it.  He is a genius who has made me look much more impressive than I could ever be.

Joe has made websites for writers, chefs, doctors and safety professionals. He has true range and talent.  He will be officially opening his business this summer, so if you need an amazing website, or know anyone who does, he is your guy!!!!

Beyond Shades of Grey

I never believed that the act of living happened in black and white.  I thought it happened in all the shades of gray, the spaces in between, the cracks and caverns and hidden places.  These past few weeks, I have felt life happening in all the colors that live inside the marrow of my heart, seen that the hidden spaces aren’t grey at all.  Through blindness, I have learned to see the colors and contours of pain and grief, love and joy, so much more vibrantly than when I was simply looking and unaware of what could bloom from the shades of grey, what lurked inside.  It seems cliché to say that through blindness, I have learned to see, but it is true in so many ways.  I have not become enlightened.  I have not become kinder or smarter or better.  I have just stopped looking, and in doing so, life comes into focus so much more clearly than when I took my eyes for granted, or time or space or love.  In just this week, I have felt desperation, compassion, depression, anxiety, affection, love, joy, contemplation, appreciation, despair, bitter disappointment and gratitude.  I have wanted to die and wanted to try to stay alive one more day. I have wanted to venture beyond what I know and I have longed to stay perfectly still.  I have done something new, and fallen back into old patterns that feel familiar and safe.  I have lived so many colors in just one week, not because I strived, but simply because I continued to exist. Continue reading “Beyond Shades of Grey”

A Small Detour

If you are familiar with my blog, then you know I have been posting a new series of recorded poems, starting with my publications in 2015, which came after a lengthy hiatus.  I am going to continue with the older poems, but at the suggestion of my friend Kim, I have recorded my most recent Visual Verse contribution.  And, if you haven’t had the pleasure of reading Kim’s poetry and her blog, I Tripped Over a Stone, you absolutely must!  Kim is a fiercely loving, kind and talented woman, who I am grateful to know and to learn from.

If you would like to read the original publication of this poem, with the image that inspired it, you can do so here.

How to Say Goodbye

 Promise you won’t forget me,
even when my name
has faded from your tongue.
Remember how I looked
into your eyes,
a season of storms
passed from a mother to a child,
how the strength of an ocean
helped you feel
less afraid.
I would have reached through flames,
cast thunder into a sky
filled with the stench of despair,
to save you
from the horrors of violence and greed.
Promise you won’t forget me,
even when my voice
has turned into a whisper of petals,
caught by a spark that changed
the shape of time.
Feel the imprint of my fingertips
wiping the tears from your cheeks,
and remember,
I will always love you.

Thirty One Years

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Thirty one years ago today, after a long battle with a gene mutation that gave her multiple kinds of cancer, my Mom died. She was 52 years old.  This photograph was taken on her 50th birthday.  This year, I will turn 50.  It has been a lifetime without her and I miss her every minute of every day. Continue reading “Thirty One Years”

The Year Through RP Eyes

I debated writing an end of year post.  I have been in what feels like an endless sinking, felt myself fading so rapidly as the days drag forward, bringing me closer to 50 and what I imagined would be an overwhelming disappointment in who I have become.  But, then I stepped back, allowed myself to refocus, to see beyond the sadness that I write about so frequently, and breathe in the joy of my life, which I probably don’t write about often enough. Continue reading “The Year Through RP Eyes”

Increments of Five

Why is it that we give monument to increments of five? Why do five and ten hold more weight than three or seven?  The fifth anniversary of my brother’s death just passed and five years feels impossible.  I have this disbelief that he is gone, and at the same time, feel the unbearable weight of his absence.  How can he be dead?  How can five years have gone by? How is it that life just continues, as if time forgot the sound of his laughter and his suffering?   Continue reading “Increments of Five”

Dodging the Rain

I am super excited and honored to have 3 of my poems in Dodging the Rain today.    My huge thanks go out to poetry editor Neil Slevin!

I don’t usually write much about my poems after they are published; I tend to allow them to be whatever they are meant to become for anyone who reads them.  But, the three poems in Dodging the Rain are all very close to my heart, about loneliness, and essentially love.  The love for a sibling, for a partner, and for a friend.  They are about stillness and about the journey.  But still, I hope that if you choose to read them, they will also be whatever you need them to be.

If you would like to read the poems, you can do so here.

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