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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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self doubt

Lethargy

I am silenced by grief, by shadows and blindness and the infernal heat wave that coats my city like an itchy, heavy blanket.  In my mind I am a writer, but in reality, I feel myself coming unhinged.  I try to climb up through my lethargy and snap my pieces back into place, but the heat pushes me down on the floor, where blindness doesn’t matter and the stillness is intoxicating.  If I am perfectly still, the heat won’t touch me and my ghosts can’t find me.  If I rise to the occasion of my creative pulse, I may burn up in the face of my fear and the darkness that chases me through the minutes of my life, whispering that I am useless and defective.  But, the sacrifice is my voice, and it is a sacrifice I am not yet willing to make.

Fitting

I have always lived under a veil of darkness, so it seems fitting to me that I am going blind.  Even as a child I drifted toward sadness.  When I was six, I was asked by my teacher to write a thanksgiving story.  My fellow students all wrote stories about pilgrims and big festive dinners with happy shiny families, but I wrote about a turkey who commits suicide.  I have always wondered how I knew what suicide was at only six years old.  Why did I feel connected to sadness and discontent at such a young age?  Well, one thing is for sure, it isn’t a surprise that  I am the very sad middle-aged woman that I am today.

I feel as if I have spent my whole life trying to feel happiness and to hold onto it for more than a few moments.  I seem to always return to dark places and habitual longings to simply disappear.  I have dreamed of being anyone but me and felt disappointed over and over again upon waking in the same damaged skin.  I have yearned for darkness and now darkness is coming.  My eyes are failing me just as I have always failed myself and everyone around me.  It all fits so perfectly together, the tragic puzzle pieces of who I am or who I  have allowed myself to become.  I am wrapped so tightly in sadness and self loathing that I cannot breathe without their cruel touch; they have defined me for so long and my fight is gone.  The older I get the more easily I give up and give in.  I am waiting now.  Waiting to go blind.  Waiting for the world to disappear.  Maybe I will disappear too.

Disappearing

I haven’t been writing, but my mind is ablaze.  My life feels so heavy and my voice feels choked and uncertain.  I may, at times, wish that I could disappear, but I wake each morning and find that I am too much flesh and creaking bones and a head filled with words that long to be freed.  I will get there.  I need to believe I will.  Even the few sentences that get released are a beginning.  I am beginning again.

Lost Vision, Lost Voice

I haven’t been writing at all lately.  No blog, no poetry, no stories….just nothing.  I feel as if I don’t have much to say and when I search for my voice I find only silence and an emptiness that holds the weight of the world.  It is as if my voice is disappearing along with my vision and no matter how I grasp at the light, it flows, barbed and cruel, through my useless fingers.  I am trying to find ways to re-discover myself, but all that I see is unrecognizable and unwelcome. I am void.  I am a scar and a memory.  I am darkness.  I have no idea who I am.

Thoughts of Returning to Work

I have been “retired”, as my husband calls it, for a little over three years and on disability for almost as long.  I admit the transition to the retired life has been hard for me.  In my working life, I was a Human Resources Manager in a not for profit organization; I made pretty decent cabbage and more importantly I really enjoyed all the human interactions.  Working in HR was sort of perfect for me because I truly love how unique every person is and hearing all the stories of people’s lives day after day also spoke to the writer in me.  I liked feeling trusted and respected and all the human contact brought me out of my head and into the world.

After my RP diagnosis, I knew that I would eventually have to stop working and initially I thought of it as a way to be free from the grind; but I thought I would have more time in the working world that I actually had.  The last four years of my working life, I noticed the changes in my vision becoming more of an obstacle to almost all of my daily tasks.  For the most part I tried to ignore the signs and just plod along, but the result was a level of exhaustion I had never experienced and evenings in agony from the pain in my eyes after having spent hours at a computer under fluorescent lighting.  I went the route of making changes in my environment, but there is only so much an employer can and is willing to do and then, of course, there are the endless questions from employees.  It all became far too much to bear and I knew the time had come for me to stop working.

I thought that retirement would be a time of freedom and creativity.  I imagined myself taking advantage of all the hours of the day in which I could write and crochet and do what I wanted to do, knowing that I could take a break and  rest my eyes when I needed to.  Instead, I found myself alone at home feeling stuck and utterly useless.  I started eating out of boredom and wiling away the hours feeling as if I was being a bad girl because I wasn’t at work. I didn’t know what to do with myself.  I avoided going outside because of the heat and the sun and there was nothing to go outside for because I had nowhere to go.  I no longer had a paycheck so I couldn’t go shopping or take myself out to lunch.  I felt like a fat blind lump with no purpose and no direction.  What had happened to the fabulous writer I had created in my imagination?  Where had the enthusiasm for embracing this new phase of life gone?  Perhaps the woman and the excitement were disappearing along with my vision.

I think I stopped feeling like a person because I felt like I was being irresponsible by not working and not doing my part in my marriage and in the world.  I felt resentful at having been saddled with RP and all the limitations that come with it.  I didn’t become one of those, “I can conquer the world” people; I became a nothing, a blank slate, a blob.  Or at least that is how I felt.

I was punishing myself for not being “normal” or not being able to do “normal things” anymore.  I missed days out at the mall and the freedom of living within the hum of the world; I missed what I had grown accustomed to in all the years of my seeing and working life. I missed the old me and I was having a hard time getting excited about finding a new me.  The truth is, in the quiet of  this new phase in my life, I saw a woman without purpose or a voice and I didn’t like her very much.  I wanted to scream and let my old voice out, but there was only silence.  Somewhere along the way, I had lost my shape and my substance.  I had no idea who I was.

Now, all these years later, I am still struggling with the acceptance of retirement; still trying to get myself motivated to write and be more productive.  I still sometimes feel like I should go back to work; but then I will venture out to the market 5 blocks from my apartment and come home with burning eyes from being outside for even 20 minutes. I still feel as if I am searching for some purpose and a renewed sense of self.  The difference is that I know I am on the path to finding out who I will become in this new phase of my life and I have hope that when I find her, I will like her.

 

 

Self Deprivation

I grew up in a family that praised the value of self deprivation.  The message was that the more you sacrificed,  suffered and deprived yourself of joy and pleasure, the better and stronger you would be.  This philosophy never made much sense to me and so I have fought against it for most of my life. Joy and pleasure always felt like pretty great things and I have a hell of a stubborn streak that led me to a consistent outright refusal to push those pretty great things aside.  The problem was that, given the self deprivation family philosophy, when I pushed against their ideal I felt like a bad and unworthy person.  Not only did I not deprive myself enough, I didn’t really want to.

Although I do believe that struggles in life can make you both stronger and wiser, if you allow them to, it always seemed to me that life was hard enough without seeking out misery and wearing it like a badge of honor.  I learned pretty early on that you don’t have to go looking for loss and suffering because life will hand it over willingly.  I began to understand loss at the age of 4 when my parents got divorced and then my mom was away from home a lot while she attended night school and study groups and finally  starting her law practice.  Then, when I was 13, she was diagnosed with cancer. When I was 14, my brother barely survived a brain tumor. By the time I was 18, the cancer had taken my mom and I had broken against the crashing blows of loss that life had doled out.

I wish I could say that I saw the proverbial light then, but it took years and, oddly enough, a diagnosis of impending blindness to help me see.  I started to really think about the idea of self deprivation and not just hating my family for extolling the virtues of such a practice.  I thought about how I had already been deprived of a whole family and a healthy brother and an amazing mom and of course, my sight and all the things that fall from grasp when someone is afflicted with RP.  I recalled a lifetime of warring in my mind about the choice between being the good girl and depriving myself of the things I enjoy, like a third glass of wine or fries with my burger, or being the unworthy woman who indulges in ice cream and lazy days on the couch watching mindless movies.  I realize that all the years of self deprivation didn’t make me stronger, only sadder and angrier.  What makes me strong is being able to love and allowing myself to feel joy and pleasure and hope.

I still can’t order fries with total abandon or drink the extra glass of wine without some psychological self-flagellation, but I am getting there.  I am learning how to truly and freely enjoy the practice of enjoyment. I see the sheer stupidity in the active participation of depriving  oneself and I know that self deprivation doesn’t make me a better person, only a deprived one.

Defeated

I have been feeling incredibly defeated since a recent family gathering. Defeated by my inadequacies, by my failing sight and my 40 extra pounds.  I have been abandoning myself, night after night, to the comforts of Cabernet and waiting to feel a sparkle again, or at least a bit of a shimmer. Today is not that day.

I was working out at home this afternoon, like I do most days of the week.  I have a dance DVD that I particularly like and after some kickboxing, I decided to get my groove on a bit with the dance workout.  During the first segment, I did a bit of a spastic leap, landed strangely, twisted my ankle and fell.  I just sat there on the floor, sobbing and dissolving into waves of self loathing.  I felt so broken.  I felt like a failure; an uncoordinated, over weight failure.

I was devastated to discover yet another thing that I would never be very good at or that I would have to take extra care doing because of the damn RP.  I know it sounds like I have a bit of a fatalistic attitude, but I arrived at this injury already feeling so broken and useless that it didn’t take much to send me over an emotional edge. Most of the time, I do maneuver through my disease with a certain amount of strength and a refusal to let it beat me, but sometimes the reminders of how RP makes me vulnerable feel like too much to bear.

For a fleeting moment, while I was dancing, I felt free from myself and from my blindness.  I let my guard down and felt a clarity of body and motion and then I stepped off into the abyss that is my deteriorating vision, slammed back into the reality of my disease and crashed to the ground.  I had forgotten for a moment that I can’t just dance without thinking of the constant threat presented by obstacles that seemingly pop up out of nowhere.  I can’t be free in my body because my motion is chained to my blindness.

I know that this is how I feel just in this moment and how I will probably feel the next time I fall.  But, I will also remember those fleeting seconds when I was dancing and I felt free.  It is that feeling of freedom that will lead me to brush the tears of defeat from my cheeks and to dance again.

Forgettable

I think I have always been rather forgettable.  I even got a disease that people seem to easily forget.  I attended a family function recently and had to leave early because of problems with my eyes, and everyone but my husband seemed surprised by this.  I think my family often forgets that I am going blind as they often seem to have forgotten about me in general, for as long as I can remember.

I am the youngest of three children, the oldest of whom is a veritable super star and the middle who has been plagued by illness since he was 18.  I was conceived to save a failing marriage and failed in this task I was born to.  I have always been not quite pretty or smart or memorable, and never really wanted so left to my own devices.  Although sad in some respects, I have been afforded the freedom to have all kinds of fun and to live a life of pure and unadulterated self-expression.

I am in my forties and married to a wonderful and boisterous Irishman.  I am heavily tattooed and change my hair as it suits my mood.   I never followed a specific career path, even though I come from doctors and lawyers and general success types. I have lived all over the country and claimed a dozen professions.  I am an artist and an individual, but in my family I am the shadow who gets the passing glance and is as quickly forgotten.

My family, when thrown together, forgets that I am around and forgets that I am going blind, but I don’t have that luxury.  I live every day knowing that my eyes are failing me and that I no longer have the luxuries of driving or working or being able to walk through the world with any kind of grace or ease.  I suppose that between my sister, who is constantly revered and celebrated and my brother, who is a constant patient, there is just nothing left for a shadowy girl who has never been much of anything.  In my family, if you don’t stand out, you don’t stand a chance.

I have dreamed of disappearing and running away.  I plot ways to get out of family functions.  If I don’t show up, I won’t be missed.  And if I do, I will be brushed to the side and forgotten. But, I feel guilty if I don’t show up.  I don’t want to hurt anyone, but then no one even knows I am there.  I can’t win and so far I haven’t found a way to escape. I suppose what I can do, what I have always done, is to simply write. I write about family and shadows and I write about going blind.

I write about going blind because I cannot forget. I write about going blind because it is part of the fabric of who I am, who I have become and who I will be .  I write about going blind because it is my reality and my strength and my fear.  I write about going blind because it is my truth, but no one in my family reads what I write or subscribes to this blog.  I am an after thought.  A back burner disaster.  Nothing.

Before the Darkness

Today I read a fellow  bloggers post (please see the link to her blog, narrowing world,  in my blog roll) about things she would like to see before she loses her sight completely.  It made me reflect on something that I have struggled with a lot lately.  I notice that as time passes I seem to sink deeper into isolation, avoiding all the challenges that come with leaving the house alone.  I feel as if I am actually becoming afraid of going out without my husband or a friend, and this saddens me.  I remember a version of myself that was vibrant and fearless and wouldn’t think twice about going out to the market or to get a coffee.  I can remember a time when I felt easy in my own footsteps and capable of facing the challenges that come with having RP, but those feelings have been replaced by a paralyzing uneasiness and a true distaste for the outside world.  Why would I want to go out when I can be safe and sound at home? Why would I want to halt the progress of my disappearance?  Perhaps I find a strange brand of comfort in knowing I can disappear from the world as the world fades into the web of my disease.

When I think about it logically, I get that the best way to combat this new-born fear is to face it and get the fuck out of the house; and wouldn’t it be great if it were that easy.  Some nights, as I am trying to fall asleep, I make big plans for myself trying to psych myself up for going out the next day.  I imagine taking the bus to some place I love and finding a lovely nook where I can sit and watch and write.  And then the morning bursts in and the sun shines far to brightly and I can’t find any reason to leave the sanctuary I have created.  All of my excuses sit conveniently at my fingertips, ready and waiting to be used every day.

Most readily available is the excuse that it is too hot and way to sunny to go out, and as with most of my excuses there is truth to this.  I loathe the heat and the sun presents real problems in the seeing department.  But, I have hats and sunglasses and I know there are ways to keep the sun at bay.  Another of my favorites is that I simply hate Los Angeles and most of its shallow inhabitants, so the choice to avoid the pools of nasty plastic people is of course the wise choice.  But, I used to be able to ignore the self-important plastics and I know that there are also some pretty terrific people in LA.  I also use depression as an excuse and sometimes I do feel so utterly depressed that getting out of bed is a challenge.  But, I know in my heart that I have the strength to rise above it; I have done it time and time again.

So, why did the blog post I read this morning make me reflect on my isolation?  Because it makes me think of all I am not seeing while I sit in my house, getting fat and avoiding interactions with people.  It makes me think of how much regret I will feel at having wasted the time my eyes have left with the world.  I know that deep within me there is the desire to be more than the dumpy housebound pajama clad woman I have allowed myself to become.  And I know there is so much I want to see before the darkness takes over.

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