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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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Retinitis Pigmentosa

Shades of Bleak

The darkness is swallowing me up again. I exist in a confined space, one part sadness, the other anger; sometimes the two become indistinguishable. I am a flame of rage in a freezing wind, burning and extinguished. I am a hollowed out heart, a fade to grey, a bird who forgot she ever wanted to fly. Even in the greenest of pastures, the bleak shades of my nature take over and I wonder why sorrow is the language I know best, why the fire dies inside me every time I begin to feel even the slightest glimmer of warmth. I am selfish, ungrateful, vision narrow, hands like ice. Hope has no colour here, no texture or sound.

I am a sliver of bone on a quest for escape, greed in a cruel fist, a lie that waits at the back of the throat. I pop pills, drown in booze, tie myself up in knots that always unfurl. I am steps never taken and a road grown over with brambles. I am the thorn in a dark night, unkind laughter, vapid tongue. I try so hard to become fiction, to become wind, to become the storm.

I still allow myself to wonder, does the uncovering of darkness shed light? Can wings grow if they have never known the sky? Tonight, I wait for the rain to cleanse me, or perhaps just wash me away.

Horizon

Some days I wander around my house, feeling lost and disconnected, no grip on the texture of the morning or the space around me. I write about having forgotten who I am, but the truth is that I have never really known. My life has been a series of failed attempts at being who I believe others want me to be, failed attempts at being kind, having substance, living with interest and curiosity. I am not curious. I am simply hanging on, waiting for something that never comes because it has no shape, because the edges are dull, because the layers are a fiction, a fantasy, a ruse. I keep hoping that the horizon holds something for me, something that will glue me back together, lift me out of the ground. The horizon lies; it looks close enough to touch but is forever looming, taunting, out of reach.

When I was young, I thought I was supposed to be beautiful, was taught that beauty lives on the skin and the physical impression you leave behind when you have left the room; no-one talked of the beauty on the inside. The inside can’t be seen. I tried to be beautiful, but beauty is the luck of genetics, a luck I didn’t have, so instead, I retreated into shadows and marked up my skin; anything to be unseen. Being unseen is lonely, grows tiresome, has a weight that becomes unbearable. It is also an addiction, a habit, a way to give meaning to your life . It leaves you wandering and lost, looking for shapes in the darkness, coming up empty handed. But still you search.

I came to define myself by what ailed me, by loss and blindness, the afflictions of self loathing and now those that come with the cruel strike of the clock. I will always struggle with the emptiness and the wandering, unable to take shape or give off light, but I also understand that the inside can be seen, through poetry and art and acts of kindness. Perhaps the horizon isn’t a villain after all, but is there to guide the way, to remind us that life is both beautiful and unruly, cruel and abundantly generous.

Telephone Phobic, Demoralised and Smudged Out by Middle Age

I have to start this with a bit of a warning; it is possible I am getting a tad obsessed with ageing; aka, I may be in the throes of a mid life crisis.

For the minute, let’s just say I am in a bit of a contemplative space, steadfastly refusing to accept that I am no longer thirty five while complaining to my husband about my aching hip and arthritic knees. I am also about to have cataract surgery, which despite my knowing it is because of RP, still seems like an old person thing. But, I am thirty five (right?), so what the fuck? Fine, I am not thirty five. It feels like an affront that I am now officially middle aged, no longer desirable, and probably losing my memory earlier than I should because I spent so many years in and out of drunken stupors. But, I can’t deny that I also feel happy. How can one person possibly deal with such an opposition of emotions at once? I wish I could say I do so gracefully and with an open mind, but the truth is that I am not sure I really deal with the emotions at all. I hide under a rock, live inside a shell of inappropriate delusions, pretend I am not afflicted with a myriad of health issues, and sometimes, as the cherry on top of the denial cake, get completely smashed. It leaves me with one very burning question; why the hell doesn’t anyone tell you how fucked up getting older is and how it leaps on you overnight and out of nowhere? I would reject this whole ageing thing if I could, but time is stubborn and cruel and clearly in charge. I am merely a demoralised and somewhat sad woman who is being systematically smudged out.

I have learned however, in my years of acquiring wisdom in some pretty crazy ways, that there is always a flip side. Did I mention that I also feel happy? I do. I am living in a place I have dreamed of living for most of my life, I have an amazing husband and a wonderful family and I am alive. I am lucky; for all of my complaining, I do know that I am incredibly lucky. I am also angry sometimes and sad and confused and frustrated and joyful and playful and lacklustre and droopy and, well, you get it; it’s that human condition thing. At the moment, I feel disbelief about the avalanche of middle age, terrified about and grateful for the impending cataract surgeries, and insanely fortunate to be able to walk down my street and see the beautiful landscape around me. I am also feeling sad because it is getting increasingly harder to read, but hopeful that the surgeries will remedy that somewhat….a post for another time.

Palatable

In my middle aged face, I see both echoes of youth and glimpses of what I will be as an old woman, but my reflection today is muddled. I am unrecognisable. My eyes grow cloudy with the passing of days and the shape of my jaw takes on the weight of decades steeped in grief. I can no longer turn the odd curves of my face into something palatable. My features change with the seasons, grow heavy with the stress of caring for loved ones, watching them die. One day I will be the whisper of a wraith, but today I am clay moulded by the hands of time, prisoner to the piercing fingers of the clock. What was colourful is now grey, no green pastures on the other side. I am aching bones and sallow skin and  scars born of an unwelcome wisdom. I am creaking knees and pain so sharp, it wakes me from sleep, although my sleep is shallow now, plucked from my grasp by hormones that betray me, fill me with fire and sadness and anger, all without roots or reason. I am a farce of time, a perpetual act of coming unhinged. I am middle aged. I am invisible.

Hope

Ever since my RP diagnosis, I have shied away from hope. Not a coquettish kind of shy, but a hand in the face, get the hell away from me kind of shy. I didn’t see the point of getting into bed with hope; I was all about getting on with the business of being blind, dealing with what was real and imminent. I saw hope as a tease, a liar, a villain. I refused to be prey to its allure. Until now.

Hope is still a mind fuck, but for the first time, I really want to be fucked. I want to be taken by hope, my thoughts flooded in it, my skin saturated by it. I want to fall into the surrender of hope, run barefoot, fly, forget.

When RP came into my life 19 years ago, cataracts came with it; in those 19 years, I have seen lots of eye doctors who told me that the cataracts couldn’t be taken out.; they were too small, not ripe enough, needed to be watched. I figured they were here to stay, just like RP, and I didn’t let the sexy face of hope tell me different. Then I moved to Ireland.

A couple of months ago, I saw an ophthalmologist in our town who had something different to say about my cataracts. She asked why they hadn’t been removed and told me that she didn’t see any reason why they couldn’t be removed. She said they must be driving me crazy, and gave me the name of a cataract specialist.

The cataracts are right in the centre of my visual field. Everything I see is blurry because of cataracts. They increase my light sensitivity so much, some days I am in tears from the pain. They give me double vision and fuck up my focus so I can’t read regular books. They have stolen colour and texture from the world and I am not ok with them anymore. I want them out.

I want to see all of the vibrant shades of green that cover this country I now call home. I want to turn the pages of a real book, discover what’s inside. I want to go outside without a hat, open the blinds and the windows on a sunny day and not be in pain.

Next week, I see the cataract specialist, who will decide the fate of the quality of my remaining vision. I know he may say what all the retinal specialists before him said, but this time I am bringing hope along for the ride.

Holding onto the Rain (Part 1)

I have been putting a lot of pressure on myself, feeling like this post should be epic, an explosive expression of my feelings and the unparalleled beauty of this country I now call home. But, the words are pale and fall from my fingertips in stutters. It seems that writing about joy is not in my wheel house; I have connected with the words that accompany tragedy for so long, I sometimes fear that I am only half a writer. But, life is also filled with vibrancy, and I want to write about all the shades of life, not just the dark shades; I hope even a fraction of the colours of my new home come through.

I have learned a lot about silver linings this year, about what is meaningful and what can been seen through the deepest darkness. The year began, for me, with unyielding physical pain that increased with the months, and then the world was thrust into battle with a virus that continues to run rampant. I stopped sleeping, I started eating more cake and drinking more wine. I became unrecognizable. I was quietly turning old before my time.

But, coins have two sides and one of them is always shinier than the other. Despite the pain and the virus and the weight, life long dreams came true. My book, “Things My Mother Left Behind”, was published by Potter’s Grove Press, and Joe and I moved to a place I have dreamed of living my whole life, even though I had never been here. I feel so incredibly lucky, and true to my nature, I also feel guilty for my good fortune. Perhaps I am a coin as well, always moving back and forth between the two sides of my own heart, never still, never in rhythm.

The story of our move begins with what I am more comfortable writing about, with drama, with shadows. It begins with a villain, a human vulture who bought our apartment building in Los Angeles and began to dismantle it the day he signed the deed……….

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.   

All I Have Right Now is Poetry

It has been a turbulent year. I haven’t done a lot of writing and almost no submitting, but I did have a few poems come out this month. Right now, it is all I have to share.

I already shared the poem in Orange Blossom Review, but if you would like to have another peek, you can do so here. My poem “Wax” appeared in Fresh Air Poetry, a new publication from the former editor of Amaryllis, Stephen Daniels. I also have a poem in this months Burning House Press that you can read here.

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