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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.

Category

Marriage

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 Body Covered in Time

I have been thinking a lot about time.  The passing of it, the motion, the gift and the cruelty of it.  I am thankful for the memories it gives me, the love and friendship.  I  hate it for everything it takes away.  Time shows itself with constant vigor.  It appears in the music I love, the way I dance and my favorite things to eat.  It appears in the lines around my eyes, in the scars that linger and mark the pitfalls of my past.  It shows itself in the explosion of color that traverses across my body. Continue reading “A Body Covered in Time”

Unwavering

I never wrote love poems, not about the good parts of love anyway, until I met my husband, Joe.  Perhaps I had never really been in love before him, or perhaps I didn’t know what real love was supposed to feel like and look like.  What I do know, is that my life and my heart have not been the same since I first met him, almost 10 years ago.

This month is his birthday month, my personal favorite month of the year because it is about celebrating him, so it is perfect that today my poem, “Unwavering” came out in Foxglove Journal.

The Irishman

I don’t often write love poems.  I have written only a handful and they are all about one person. He is a man who has Ireland running through his blood and a heart that beats with a strength and rhythm that makes everyone around him feel safe.  He has faced grief and adversity, but has always persisted, always lived with a true voice and the courage to be exactly who he is.  He is the embodiment of kindness and generosity.  He brings laughter and pure joy into the world around him. He is at once brave and vulnerable, a man who takes care of everyone with gentle patience, and a boy who is delighted in the world of Doctor Who and Batman and video games.  He loves science and technology, isn’t afraid of the future and has a mind for building things.  He is a teacher and a scholar of life.  He is a friend and a strong shoulder to lean on.  He is my husband and my good fortune.  He is my champion, my safe space, my home.

Happy Anniversary My Love!

Love Poem

I don’t often write love poems, so I am especially thrilled to have this one in Foxglove Journal.  A huge thank you to editor Elizabeth Gibson!  The poem is called, “Honest Hands”

Poem in Foxglove Journal

I am thrilled to have another of my poems in Foxglove Journal. My gratitude goes out to editor, Elizabeth Gibson.  This one is very different from my usual stuff.  You can check it out here.

At Home in the Darkness

In the past few months, years after the inception of “Stories from the Edge of Blindness”, I started to really explore the blogging world rather than just stand on the outside in abject terror, feeling like a loser.  I started to interact and exercise my voice. I started to read some amazing blogs, written by writers I have come to admire; writers who teach me things and make me think.  One of my favorite blogs is Tom Being Tom, and recently, Tom wrote something that has had me thinking about being, becoming and changing, as the years of my life traverse, meander, sink  and soar. His post is, “We Are Not But One Thing”, and when you read it, you will understand why it got me thinking.  Tom is an intelligent and thoughtful writer.  He presents new ways of thinking about and looking at life. He is a hopeful realist.
Continue reading “At Home in the Darkness”

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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