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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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relationships

Your Promises are Collapsible

First and most importantly, I hope all who are reading this are safe and well and home. I am, as ever so incredibly grateful for the support and presence of this community in my life!

Continuing with my recorded poetry series, today I am offering the fourth of six poems originally published in Chantarelle’s Notebook. I hope you like it. Video credit goes entirely to my husband, Joe Richardson.


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.

By Your Side

I have been in a bleak place lately.  It is a familiar place, a place of introspection where I can try to figure out what is bringing on the sadness.  I thought it was because of the shit storm of rejections I have been getting, but they were just the cap on feelings that were already dragging me under.  I have been feeling overwhelmed for so long.

After coming to the conclusion that it isn’t the rejections that are pulling me into the clutches of sorrow, I had to stop and breathe and look behind my eyes to see what has been troubling me.  This can, at times, be a herculean task, as I seem to be troubled far too often, and it is never just one thing. But, I have become good at peeling away the layers, seeing what lurks beneath.
Continue reading “By Your Side”

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”

Chantarelle’s Notebook

I am super excited to have 3 of my poems in Chantarelle’s Notebook.  A  huge thank you to editors Kendall and Christina!  You can read the poems here.

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.

Seasonal Voice

I wasn’t going  to write about Christmas, but here I am at 6am on Christmas Eve morning, reading lots of posts about Christmas, and I felt like adding my seasonal voice to the mix.   Let me start by saying, I love Christmas!

When I was a child, my Mom adored being festive; she had boxes of decorations for every holiday and made sure that the rooms, windows and exteriors of the house were appropriately adorned.  Christmas was her favorite; although Halloween did run a pretty close second.  Every year, upon the arrival of December, my Mom would open the plethora of Christmas boxes, overflowing with elf figurines, tiny trees, dancing Santas, lights, paper cutout snowflakes and every other (non religious) Christmas decoration you could imagine, and transform our house into a seasonal feast for the eyes.

During the first week of December, she would bring home the tree.  She lit a fire and made pots of tea and we spent the day decorating the fragrant branches with ornaments that had been around since before I was born.  My moms exuberance about the holiday was catching and we couldn’t help but be swept away in it; she made the entire month of December shiny and joyful and fun.  We celebrated the season and the month of December, not just one day.  It was a celebration of life and of love; it was a time to wrap up in the comfort of home and family.  We were lucky.

My Mom never lost her love of Christmas, even when she got sick.  I was 13 when she was diagnosed with cancer, but even in the years when she was the sickest, she had a magical ability to conjure up joy.  For her very last Christmas, my mom was in the hospital, but she insisted that we celebrate.  We brought Christmas to her hospital room and she, as always, brought love and light.

8 days after Christmas, my Mom died.  For years, I couldn’t celebrate Christmas, and when I tried, it felt empty and wrong.  It was as if the light of Christmas had been extinguished with my Mom’s light. After her death, I slipped into darkness; I couldn’t breathe or feel anything.  Christmas became something to dread, because she wasn’t there to make it beautiful, to bring it to life.

I turned my back on Christmas, rejected its trappings and merriment, but time and love eventually brought me back into the arms of the season.  I came to a place where I could feel grateful for having known and loved someone as magical as my Mom, rather than just feeling the pain of her absence.  I started thinking about how lucky I was to have had a Mom who made Christmas so special. I was slowly coming around, and then, 9 years ago, I met my husband and found myself actually getting excited about Christmas. With my husband, I found joy and home, and I wanted to share a little bit of my Mom’s magic, which, I realized, had been with me all along.

 

 

 

Tiny and Immense

When I was first diagnosed with RP and thinking constantly about what it would be like to be blind, I was gripped by the spikes of claustrophobia.  I imagined that the world would become tiny, the darkness choking me and snatching my breath; the term tunnel vision, which is used liberally in describing what it is like to have RP, absolutely terrified me.  The thought of it was constricting; even writing this, I am holding my breath, as if doing so will stave off the inevitable. The day of my diagnosis was the day I started waiting for the world to close in on me.

I have always been somewhat addicted to darkness, prone to seeking out its path and wrapping myself up in the comfort of its fingers, but in the 15 years since my diagnosis, darkness has taken on new meaning and form; it has left the confines of my mind and heart, and settled into my eyes. I have come to realize that the reality of darkness, in relation to blindness, is the opposite of what I originally feared.

Now, the darkness feels immense. It makes me vulnerable and exposed rather than protecting me, like it did before RP showed up.  The darkness swallows the edges of everything and comes into a twisting life of its own.  In the dark, I feel as if I am always about to fall and whatever space I am in loses its definition and its structure.  It is unsettling.

The most recent experience I had of total darkness, was during my ERG, which you can read about here. During the ERG, the darkness came to life; I could see its tendrils twisting around me, escaping boundaries that only exist in the light.  I realized that the darkness is limitless; it has no parameters and nothing about it is predictable.  It takes something compact and at once expands and erases it.

Although I am still afraid of  what continued vision loss will do to my life and to my relationships,  I arrived at a place of acceptance a long time ago.  I suppose I have grown to both love and fear the darkness.  RP has been a part of my life for a long time; fighting it is futile and although I never welcomed it, blindness is a part of my fabric and I accept its texture.

I want to help expand peoples understanding of what it means to be blind and how a disease like RP works, so I am going to write a series of posts about the mechanics of RP and how it has manifested itself in my particular case. The first in the series, called, “What do you See?“, I posted a few days ago, and I will continue the series next week.  I hope that anyone who reads “Stories from the Edge of Blindness” feels free to ask questions; if there is something you are particularly curious about, please let me know and I will write a post about it. Thank you for reading and for being a part of my crazy road to blindness.

You can also find me on Facebook and Twitter

And, if you are in the mood for some pictures of some seriously cute pugs, you can find my babies, Blossom and Jade, on Instagram.

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