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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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depression

Remembering How To Breathe

It’s been a rough week. Lots of tears. Lots of sun falling out of my mouth, leaving shadows to choke me and change the taste of the landscape. When I feel this way, all I want is to disappear, to blend into the chipped paint, hide beneath the floor boards. I cry while looking at cooking shows. I cry sitting at the computer, washing dishes, riding in the car watching the filthy city shrink under the waves of heat that oppress and burn. I am coming unglued. I have forgotten how to breathe.

In getting ready to move, I sink into the lives of people I have loved, people who have died. I am tearing away scar tissue, leaving wounds vulnerable to the teeth of time. I am awash in memories that leave me desperate for youth, for the feeling of my mother’s arms around me, for the delight in my brother’s boyish laughter, for the scratch of my father’s beard against my cheek. The weight of missing people presses against my eyes and taints the color of the sky. I am coming unglued. I have forgotten how to breathe.

I am tying up the loose ends of my broken body, retrieving my white canes from their hiding places, spending day after day in dental torture chairs, wishing I hadn’t allowed myself to get so fat. My heart has been buried so deep beneath the flesh, I no longer recognize its rhythm against my ribs. The mirror is my punisher, the fist that reminds me I have failed again, that I will never be good enough. I am coming unglued. I have forgotten how to breathe.

My book got a mediocre review. It crushed me. It pissed me off. It left me wanting to quit writing, to burn through the lines on the page, scatter hope into the dirt. I would have preferred a scathing review to the placid temperature of the three star review. Intellectually I get that my writing isn’t for everyone, but between love and hate the color drains away. It is easy to forget that it is only my heart on the page, my stories of coming unglued, of forgetting how to breathe.

But, life is a coin. Tarnished in some places, sparkling in others. It is sadness and joy passed through fingers, dropped and forgotten, discovered and cherished, held tightly against your palm. Life is the shadow and the light, the dream come true and the longing that is shattered. I am not unscathed. I don’t want to be. I sit in the center of what hurts, because I know that is where joy also lives. Sometimes I need to come unglued, so I can remember how to breathe.

The Outside of Everywhere

I linger on the outside of everywhere. I am a skulker, a bone shucker, a fraud.  I slip behind curtains, under floorboards, into panes of glass that mute my words.  I am awkward and stumble more than I stand tall.  I am late to the gathering, last to get the joke, the one in the corner feeling confused.  I am hollow, looking for substance, failing.  I am fleeting, a pale representation, a liar.  I am a nail biter torn to the quick.  I am clamor and catastrophe in the flick of a switch.  You are my captor, my captivator, my annihilator.  You are the steely grip of an unblinking gaze.  You are my habit, my protector, you pull the strings.  I will always surrender.  You will always win.

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.
Continue reading “How Do I Get Out Of Here”

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.
Continue reading “Let’s Talk About the D Word”

Poem in Literary Juice

I am super excited to have one of my poems in the December issue of Literary Juice.  Thank you editor, Sara Rajan, for including me in your amazing magazine.

In a Thousand Directions

I need to begin this blog post by saying that I am not so sure I should actually publish it, but I probably will; more often than not, I do the things I shouldn’t do…….

I am in a dark place.  That phrase always strikes me as so fucking ironic, given the whole blind thing, but it is appropriate on so many levels.  So, yes, I am in a dark place; not the place I had imagined myself after completing my orientation and mobility lessons, but that isn’t a surprise.  I am an expert at building up the outcome of things and calling it being positive, when really I am just setting myself up to fail.

I imagined that I would emerge from O&M feeling a renewed sense of independence and freedom, but instead I feel like a huge weight has been tied around my neck.  I thought I would feel invigorated to go outside and be a part of the world, but I feel more isolated than ever.  I know that I am depressed, and that isn’t a new feeling for me, but because I had so vigorously anticipated  the opposite, I am pretty far down in the pit.

I have been spending countless hours trying to convince myself that I don’t need Zelda, so I can go back to my life before her; when I went hiking and shopping, and got to put some dedicated effort into pretending that my vision is just fine.  But, maybe it is just fine and I can keep getting by like I was before….until something super cataclysmic happens and I am thrust back into reality.  Or maybe that is the most stupid plan ever.

The point is, I don’t know.  I just don’t fucking know.  Is my vision really that bad?  Do I need Zelda?  Was the visual field correct?  I feel so crazy walking down the street with Z, seeing what’s in front of me.  Sure, if someone were to suddenly turn a corner or come around the side of me from behind, I wouldn’t have a clue they were there, but how often does that really happen?  Do I even know how often that happens?  Probably not because I can’t fucking see.  But, I can see.  I see you walking toward me.  I see that you have brown hair and a red shirt.  I see you from a block away.  But, I don’t see you from even a foot away if you are next to me.

I can’t get out of the mind fuck, and I had to face the fact today that I have been acting like a real asshole by allowing myself to continue to be completely consumed by all the emotions that have come up as a result of bringing Z into my life.  I haven’t been that nice to friends and I haven’t been a support to my husband in all the ways I would like to be.  I cut myself off from so much that made me feel good, all so I could focus entirely on something that shines a light on everything I feel I am not supposed to be; flawed and broken and fat and lazy and blind. Focusing on all of that made me mean, which is something that is really not ok.  Flawed, broken, fat, lazy and blind; well, those things just make me human.

If I sound like a total nutter….well, welcome to my brain.

I know that there are some people who may find the way I express myself to be detrimental, to me and to the blind community, but, come to think of it, they probably aren’t reading my blog.  Anyway, I just want to say that I am not a representative of the blind community, nor do I speak for visually impaired people.  All of this mass of crazy shit that I write about is just my journey and I have to do it as honestly as I can. My honesty is messy and uncomfortable and I feel so ashamed of it and of myself most of the time, but still I am compelled to write it out and scrape some of the bleakness off my  skin.

Eating Feelings

I have been eating my grief in mouthfuls of unhealthy foods and bottles of booze; since beginning my O&M lessons, I have gained 8 pounds.  But, recently, Joe changed shifts and I took it as an opportunity to get healthier, both emotionally and physically.  I haven’t had a drink since we started getting up at 4 a.m., and I thought I was eating better, but in the past week, I have gained 2 pounds.  I feel defeated and I know that I continually defeat myself;. it is an avalanche.

I have dropped down into dark places since I was a child, and although I have become more adept at getting myself out of them, the older I get, the less I want to get myself out.  I feel exhausted sometimes, just by the act of breathing and having to interact with the world on any level.  I can’t find the energy to propel the positive into a more prominent position than the negative; and so I eat.  I eat and I gain weight and I become more and more unrecognizable to myself.

It has also occurred to me, because I have gained so much weight during O&M,, that perhaps I eat so I can keep the focus on being over- weight rather than on things that are so much more important, like my writing and RP and Zelda and my close relationships. In my family, there in nothing worse than being over-weight, so if I stay over-weight, I get to keep being the failure in my family; my role stays intact and my focus steady.

Most days, I wake up wishing I could step out of my skin and be a better person for everyone around me.  A better wife and daughter and sister and friend.  Perhaps all of these feelings are happening simply because my O&M lessons are ending and it will be me and Zelda and blindness,  in a world that is breaking apart, a country that is falling into ruin under fists of rage and hatred.

I don’t write about this for sympathy, or even understanding, but simply because it is the truth and I know that it isn’t just my truth. So many people feel versions of this and I hope that my writing about it may help someone else feel less isolated.

This sadness isn’t all of who I am, just a part that I recognize and try to rise above so I can become someone better, someone who I know I can be. I look forward to the day when I can see the person behind all of this darkness.

 

 

 

#4 Mourning

O&M lesson #4, still within the comfort of the Braille Institute;  I am not quite ready to start working outside with Tamar and Zelda, and anyway it is bloody hot here in Los Angeles, so the more time in the a/c, the better.

As usual, the lesson began with Tamar and I having a chat.  I am incredibly grateful for this time she gives me to check in about my feelings and my progress. I told her about my one day of practice (refer to previous post) and my feelings surrounding that day.  She told me that it is important that I give myself a chance to mourn; that if I don’t, the emotional stuff will keep owning the process and I will never get truly down to the practical work that is going to make my life more manageable.  One of the most difficult things about RP is that you mourn over and over again; each time you loose more vision or your vision loss dictates changes in your life.  It isn’t a constant state of mourning, but every time I grieve, the process breaks off pieces of myself that I can never get back.

I have been feeling down for weeks and pushing away the reality of why, telling myself that I have no reason to feel depressed; Tamar helped me get to a place where I can acknowledge the depression and the validity of it.  I am mourning the loss of my life before Zelda, when I could walk in the shadows quietly and tell only those I chose to tell that I am going blind.  I am mourning the vision I have lost over the past year.  I am mourning the loss of my secret and the power I had to keep it.

It may sound crazy that I believed I had a secret; I write this blog and have done for years.  I share my story with whoever wants to read it.  But, I still felt clandestine in my everyday life; I held onto the power of how or when or even if  I revealed my blindness to those who touch my physical world.  Perhaps it was my way of hiding from my own disease or of avoiding having to get down to the bones of the grief.  Now, I give gravity and respect to my feelings and I finally understand how doing so will help me move on with Zelda in hand.

Of course, Tamar and I did more than just chat, but the talk helped me immensely; it is strange how, although I am the one who is blind, she seems to know more about it than I do.

After our talk, we returned to the dreaded stairs.  We worked on the short flight for a while and I definitely got more confident, but the stairs up to my apartment are very different; a lot more of them in a narrower area.  So, Tamar took me into the stairwell.  It was an area of Braille that I had never seen before, so I had no visual frame of reference and no idea what to expect.  I closed my eyes, Tamar pointed me in the right direction and Z and I were off.

We got to the top of the first landing and Tamar instructed me how to use the cane and then also my hands to feel along the wall, around to the right and to the next flight of stairs.  We went up three more flights and then turned around to come back down again.  It was disconcerting and I was nervous, but it gave me a huge sense of accomplishment.  I relied on Z during that exercise more than I ever had, which means I was relying on myself in a whole new way.

At the end of the lesson, I felt better about the stairs and better about my feelings and much more ready to continue this process in exactly the way I need to.  If it means I isolate for a while and put the majority of my effort into this new adventure, then that is what I will do, without apology or excuse.  Because this blind thing, this RP thing, this white cane thing….it is a big deal.

The Sad Turkey

So, I started this post at Thanksgiving, but didn’t want to wait until next Thanksgiving to post it; so perhaps untimely, but here it is:

When I was six and in first grade, everyone in my class was asked to write a Thanksgiving story.  It was the writing of this particular Tday tale that marked the moment I truly became a writer.

As most children do, the majority of the class wrote stories about pilgrims and feasts and family togetherness.  I took a different approach.  My story was called, “The Sad Turkey”. It was a simple story really.  A turkey named Jake was sad.  He was sad because he knew Thanksgiving was fast approaching and that he would be killed and become a part of the feast.  Jake decided to take the power of his life into this own wings and walked out into the street to commit suicide.  He was promptly hit by a truck and killed.  The end.

I know this may seem like a grim tale coming from the mind of a six year old child, but I think it was a marker of my creative spirit and what was to become my creative passion.  I  became a writer the minute those words spilled out onto the page and I have always been particularly proud of “The Sad Turkey”

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