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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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Degenerative Retinal Diseases

Perspective on Suffering

I approach the idea of suffering from 2 angles.  One is from the knowledge that there is always someone who is suffering more than me, suffering atrocities that I cannot even begin to imagine.  The other, is that as individuals, our own suffering is indeed the worst in the world. We walk in our own skins, live in our own minds. Ever since my RP diagnosis, 16 years ago, I have had people comment that they shouldn’t complain to me about their own suffering, given that mine must be so much worse.  I have also had people tell me that RP isn’t so bad, that it isn’t going to kill me and there are people who have it much worse than I do.  I believe we are all human, we all have value in our pain and in our joy and in our expression.  Our plights are our own, but hopefully by sharing our experiences with each other, we learn and find spaces of healing and understanding.  Or is this all bullshit?
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Eating Barbequed Iguana

I fell a few weeks ago, on the sidewalk, while gawking at another new group of hideous town houses that are being built in our neighborhood.  When I fell, I cried, not because it hurt, but because I felt humiliated, broken, slapped in the face yet again by RP.  My depression and self loathing voices took center stage and told me I was useless and really shouldn’t even be outside if I can’t manage to walk a block without falling down and scraping my knees.  I wanted to hide, from the RP and the day and the world.  I wanted to hide from myself, pretend I was graceful, dream I could float.  My sadness turned to anger and I stumbled home, terrified that every step may be the one to send me back into the unwelcome embrace of the pavement. Until very recently, this had been my usual response to falling.
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Hiking Blind

A friend recently asked me how I manage hiking with limited vision.  I have actually been thinking about writing a post about this since I started hiking again. I thought it might be something other people wondered about as well.  How the hell can a blind woman go hiking?  You have to remember, I am blind but I can see.  It is probably less confusing if I refer to myself as VI (visually impaired), but I am legally blind.
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How Do I Get Out Of Here

I didn’t start this month thinking I would be writing about mental illness, but I have been so encouraged by the bravery of other writers sharing their experiences, I feel the need to share my own, with the hope that it may help someone, somehow.  My experiences are not unique, but that is the point; there are so many of us out there who suffer from depression and anxiety, and we should not feel ashamed.
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Let’s Talk About the D Word

I recently read two blog posts about depression, from Wil Wheaton and HLFHM.  Both are brave and honest accounts of what it is like to live with depression, and both are written openly and without shame, in the hope to help others understand and feel that depression is nothing to be ashamed of.  These posts made me want to make an attempt at throwing my dilapidated hat into the downward spiral. Hopefully, the more of us who talk and write openly about living with mental illness, the more it will come out from underneath its blanket of shame.
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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.
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Stepping Back

April was a month full of the celebration of poetry, which was enlightening and exhilarating, but for me as a poet, it was a month weighed down by rejections.  March was the same.  I haven’t had anything accepted for publication since February and the constant rejections are beginning to pluck at my barely opaque confidence.

I am not sure why the rejections are hitting me so hard right now.  It could be the sheer volume of them or perhaps the nagging fear that all writers experience, of being a fraud or no good. I wish I could say that being published doesn’t matter, but it has become something that I look to in order to gauge the quality and relevance of my writing.  Right or wrong, it feels inevitable to me.

There have been some incredibly good things that have happened in the past month, with regard to my poetry specifically, but the rejections are tarnishing those good things, or I am allowing them to.  I can’t seem to get out from under the weight of defeat.  I don’t feel motivated to write.  All the words feel wrong, trite or inconsequential.  It feels pointless and it is making me feel sad.

I am not looking for validation.  I know that the validation can only truly come from within me.  I need to step back and try to gain some perspective.  Perhaps I need to step back from writing altogether for a while, or maybe just step back from submitting my work and try to focus solely on the writing.  I don’t know.  All I know is that it feels bad.  Every day I have to pick myself up from feelings of defeat and it is getting harder and harder to do.

Maybe I need to get out of the house, go hiking.  Maybe I need a juice cleanse or a therapist.  Maybe I need to take up mahjong.  What I do know is that I need to get some distance and try to look at all of this with different eyes.  The eyes I have just aren’t working.  I suppose they never really have.

The Flip Side

Ironically, given that this is National Poetry Month, this post is not about poetry (they can’t all be), and it may not be particularly poetic.  I just finished and submitted one of the most personal poems I have ever written, and although I am thrilled that it is the month of celebrating poetry, and I am reading it voraciously, I need to take a couple of days away from writing it.

I recently had what I now call ( thanks to Katrin),  a “sucks to be blind” day.  I need them every once in a while; I got through it, I always do, and I emerged from it on the flip side of what blindness and RP have brought into my life.

I have read a lot of blog posts, written by visually impaired writers, about the benefits of being blind.  I always scoffed at them.  What could possibly be beneficial about having a disease that is causing you to lose the one thing that pretty much everyone is terrified to lose?  I thought it was total bullshit.  I was wrong.
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That Kind of Day

I had leftover sweet potato fries for lunch.  Yeah, it’s that kind of day.  I can’t focus.  The city is bumpy and screeching outside my windows and I can smell summer approaching. I know that spring has only recently officially begun, but there is no Spring here, not really.  I fell on the sidewalk, while walking the dogs and gawking at the monstrous buildings that are popping up like weeds in Hollywood. I got a bit scraped up and bruised. Why does falling hurt more when you’re almost 49? And almost blind? I cry when I fall, not because it hurts, but because it reminds me.  I am resenting Zelda (my white cane, for those who haven’t been introduced) and RP and middle age. I should be working on poetry.  I am writing this blog post instead. Continue reading “That Kind of Day”

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