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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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blind chick

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.

 

 

Vision Walk

This October, I will be participating in my fourth Vision Walk to help raise money for the Foundation Fighting Blindness.  The FFB hosts Vision Walks all over the United States to raise money for research to help find treatments for degenerative retinal diseases like RP.  The FFB is truly an amazing organization that is helping to give real hope to the blind and partially sighted, and I am proud to be the captain of my Vision Walk team, Susan’s RP Trail Blazers.

For more information on the Foundation Fighting Blindness, you can find a link to their website in my blogroll.  If you want to check out my Vision Walk page and maybe make a donation on my behalf, you can click on the link below. Susan’s RP Trail Blazers

Thank You!!!!!!

Silent Disease

I have begun to think of RP as not only an invisible disease but a silent one as well.  I don’t generally  have the tendency to feel sorry for myself or to draw a lot of attention to the fact that I am losing my sight. I don’t see the purpose of allowing the RP to defeat me and I also don’t want to make other people uncomfortable.  It is as if I have somehow silenced my own disease by not allowing others to recognize my struggles. This is particularly true with my family.

I have an older brother who has suffered with serious illness for most of his life and is now going through his third bout with cancer.  I know that my blindness pales in comparison to his struggles and I know that my parents are in a constant state of worry and exhaustion as a result of being my brother’s primary caretakers.  For the past year, we have all been consumed with taking care of him and I have tried to be especially careful not to talk about the RP.  But now. on the eve of the appointment with my specialist, I am feeling afraid and resentful that my disease, however minor in my personal family schematic, goes unrecognized.  I also know that I am the one who has created the silence around my vision loss and the person I should truly be resenting is me.  My family is loving and supportive and I know they would be there for me if I told them I needed them. I guess I don’t want to always have to ask.  I want them to acknowledge that, although I haven’t suffered a fraction as much as my brother, I do have struggles related to my RP.  And then comes the guilt.

Who am I to complain about a little impending blindness when my brother has faced death over and over again in his 47 years?  I have an amazing husband and great friends and besides RP, I have my health.  I feel so guilty for wanting acknowledgement from my family about my failing sight; wanting them to recognize that it is actually really hard dealing with the limitations and the fear that come with RP.  I feel juvenile in my desires for my disease to be noticed. And I feel so selfish complaining about my struggles when my brother’s situation is truly tragic.

Looking at all of my brother’s suffering definitely puts my own fears into perspective, but I would still like to hear that they recognize how frightening it must be to be going blind.

I May or May Not See You in Two Years

Every two years, I go into the Jules Stein Eye Institute to see my retinal specialist.  There is nothing he can do for me except tell me if my remaining retinal cells are intact or if they too are fading away.  I always feel some anxiety before I see him and I always feel as if this time will be the time that he tells me my luck has run out.  Every time I see him, I try to remember the details of his gaunt face and his messy Albert Einstein hair, because I realize I may not be able to see him in two years time.  He is a kind and gentle man who gets visibly excited when my test results are good and who doesn’t order me to go through unnecessary tortures like an ERG.  I like him.  I think I will still like him even on the day he tells me my vision is no longer stable.  He may tell me that in four days when I see him.  I have a strong feeling that he will.

I have been feeling increasingly unsteady and unsure of myself and my surroundings in the past year or so.  I get much more anxious when I am out at the shops or a restaurant or on any occasion that requires walking through a crowd of people. I get the sensation that I am about to fall off into the dark abyss that is the edges of my visual field.  I find myself moving more slowly and carefully and I feel much more afraid.  Sometimes it feels as if I am suffocating or drowning; I can’t breathe and I want to hide from what I know I am not seeing.  I want to make sure to write about what I am seeing because I have no idea when the luxury of sight will be taken from me.

In four days I will know more than I know in this minute, but until then I will wonder anxiously and prepare myself for whatever news the doctor gives me.

 

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.

Of All the Super Powers…….

When people get up the courage to ask me questions about what it’s like to be going blind, one I get a lot is” do your other senses get stronger as your sight gets weaker “? It is as if people somehow want to believe that going blind gives super powers to the other senses. I suppose that some of my other senses do seem a bit sharper because I put them to more use, but if I had to say I had a super power sense, it would most definitely be my sense of smell.  Of all the super powers to get, I get the super powered nose.

It is uncanny really.  I can walk into my apartment or someone else’s house and immediately detect any odd smells.  I can smell the tiniest bit of gas emanating from the stove or the order of fertilizer that is being used in a garden up the street. I smell the trash ages before any normal person would think to take it out and I know which one of my cats has recently been in the liter box because my nose differentiates their different odors. But it isn’t all bad smells.  I can also detect the perfume of flowers in the air from half a mile away and smell bread baking in a restaurant that is up the street and around the corner from where I live. I can tell you what kind of shampoo the girl in the back of the bus uses and I can smell the comforting scent of my husband from across a crowded room.

I think I have probably always had an acute sense of smell, but I didn’t really start to notice its prevalence until I knew I was going blind.  Maybe it was my way of trying to feel more whole or less broken.  My eyes may be shot, but wow does my nose work well.  Maybe I wanted to feel special rather than different. Maybe I was a blood hound in a past life. Or maybe I really do have the smelling super power.

So you better beware,  I may not be able to see you when you come into the room, but I will most definitely smell you.

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.

Reflections off Water

My husband and I took a whirlwind journey this weekend to attend a family function and I have to say I wish I could have left my RP at home.

We live in Los Angeles and the event was in San Francisco, so we decided to drive.  It is about a six-hour drive and we like the time together in the car chatting and singing and laughing, but it also means a day spent basically outside and even with sunglasses my eyes protest having to be subjected to so much sun time.  When we have done this drive in the past, I usually get a few hours upon arrival to rest my eyes  in a darkened room, but this time we had to go directly to the event.  The venue was beautiful, with windows facing a lake and sun reflecting off the water through the windows. A totally beautiful nightmare for someone like me.  Sunlight reflecting off water through windows is akin to having lasers beamed directly into the center of my eyes; even with my oversized sunglasses, it hurts like hell.

So, there we were, sitting in the front row closest to the windows, my eyes already feeling sore from the 6 hours in the car, and I am feeling like a full-blown freak because I am the only person in the room who is wearing sunglasses.  Did I mention it was a religious service?  We were there to celebrate my niece’s Bat Mitzvah and between my tattoos and my big Jackie O sunglasses, I don’t think I made a very good impression on the Rabi.

The service itself was absolutely beautiful and I shed many proud Auntie tears, but it was also over two hours long and by the time it concluded, my tears were partly from pride and partly from pain.

If you have ever attended a bat mitzvah (this was my second and my husband’s first), you know that a huge party always follows the lengthy service and as family we were expected to stay.  I knew I wouldn’t be able to make it to the end and started planning the quickest possible exit.  My eyes hurt so much I could barely keep them open.  I decided that a quiet retreat would be the best way to leave, so Joe and I went off as if to take a walk and disappeared into the early evening.

I have to admit I was incredibly relieved to be out of there, away from the pressure of being the dumpy blind black sheep in a family of diamond studded song birds, and away from the assault of sunlight reflecting off water.

Creative Blind Chick

When I was diagnosed with RP, I remember feeling lucky that I wasn’t a painter or a photographer and that my particular creative outlet wasn’t reliant on my eyes.  I had never been very good at hands on creative expression and I thought perhaps my inability to paint or to capture a clear image on film might have been due to the fact that my eyes probably never worked quite right; although that may be true about taking photographs, I do realize that I can’t draw because my brain just doesn’t work that way.  But, a few years ago I discovered that there was something I can do.  My friend Patricia taught me to crochet and I found that I really love it.  I love putting colors together and designing patterns and I love the feeling of getting something lovely and tangible at the end of the skein.

You may wonder, how that hell does a blind chick make scarves and blankets? Well, it is because this chick is RP blind.  My peripheral vision is shot, but my close up central vision is still pretty good and as it turns out, perfect for something like crocheting.  I know that I won’t be able to do it forever, but I am grateful to be have found another creative outlet.  I get to give people gifts that I have hand-made and I am even making an attempt at selling my creations. If you are interested in seeing what I make you can check out my stuff by clinking on my blogroll link to FloweringInk Plays With Yarn.

I know I will never be a painter or be able to capture images that pierce the soul, but I can make you a blanket to keep you warm.

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