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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 perception

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.

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.

So Far Beyond Writers Block

I haven’t written a word in ages.  Not a blog post or a letter or even a grocery list.  I try to read other blogs about writer’s block and books about writing tools, but I think what I  have isn’t writers block, but total writing avoidance.  I find myself actively avoiding this blog and the computer in general.  I don’t check the email address associated with this blog because I am afraid that if I do I will feel guilty for not writing.  But, when I come here and I write and I share my experiences and I put out a new blog post, I feel elated. I know that my one true passion is for writing and yet I avoid it as if it will somehow cause me harm.

I have thought about the possibility that what I am most strongly avoiding is writing about RP.  I find myself avoiding a lot of things because of the RP; some because of physical limitations or ramifications and some for purely emotional reasons.  But, I don’t have to write about RP.  I choose to write about RP because it is what I know and it is so entangled with every moment of my life, but I don’t write because I have RP.  I loved to write long before I knew I was going blind and even then I suffered from this total writing avoidance.

So, maybe I am just lazy and I don’t want to put in the work it takes to write something I can feel proud of.  But I will do the dishes and clean the house and work out and do the laundry and a host of other things before I ever get around to sitting down at the computer.  I will take the time to crochet 20 scarves to avoid writing.

Maybe it is fear.  But of what?  Pressure, failure, discovery? Perhaps I am afraid that I really don’t have anything to say or that if I try I will find my voice has disappeared.  I don’t know.

But I do know that I am here now, in this moment on this day, writing.  And it doesn’t have to be perfect or great or even good as long as the words are there.

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.

Avoidance

I have been avoiding a lot lately; my writing, people, my blindness.  I feel my vision deteriorating and all the symptoms that come with RP seem to be screaming at me to pay attention, but instead I have a few glasses of wine.  I stay in the house or venture only to familiar places.  I try to forget that I am going blind and I try to help others forget.  Too many other tragedies are flooding the lives of the people I love.  And, the blindness isn’t going anywhere; I wake inside it every morning.  Time for me to look it straight in the face again.  Time for me to venture out among the people.  Time for me to start writing.

Useless

One of the most overwhelming feelings for me in connection to RP is uselessness, and a lot of it stems from the fact that I can’t drive.  As I have written and written, Los Angeles is a city of cars; most people have at least one and most everyone depends on their car to get them through their lives.  When you can’t, or don’t drive in a city that is carcentric, you can end up feeling that your usefulness as a friend, a wife, a daughter, is sorely diminished.

As I get older and my friends are traveling more and needing rides to the airport or wanting to go out to new and far off restaurants, I hate that I can’t ever be the one to offer the ride or step into the role of designated driver.  I sometimes end up  feeling like such a burden on my friends and it seems that all I am good for is a chat and a shoulder to cry on.  I want to be the friend who can be depended on for a ride or a rescue and instead I am always the one needing the ride or the rescue.  Maybe if I lived in more of a walking city or town, the field would seem a bit more leveled, but as it stands I simply feel as if I am not keeping up my end of friendships. I want to be the friend who can participate equally in everything.  I will never be that friend.

As a wife, it hits me the hardest.  My husband had surgery last year and it was devastating for me that I couldn’t take him or pick him up.  He had to rely on his brother while I waited at home for him to come back with bandaged knee.  It made me feel so inadequate, so useless. I can’t run out to the store in the middle of the day if it isn’t in walking distance, so he gets burdened with having to do all of our errands with me on his days off. I want to be the wife who can pick my husband up at the airport or run out to the market to get him a treat late at night. I will never be that wife.

This year, my brother was diagnosed with cancer and has had hospital stays and numerous doctors appointments and chemotherapy sessions, all of which I could have taken him to if I didn’t have RP. I could have visited him at the hospital any time without having to burden my husband or parents with giving me lifts.  This also makes me feel utterly useless as a daughter.  My father and stepmother aren’t young and frankly my stepmother really shouldn’t be driving at all, but they have been driving back and forth across town with frequency over the past few months.  If I wasn’t losing my vision, I could relieve them of some of the driving responsibility, but instead I prove to be a burden myself.  I want to be the sister and the daughter who can be there in a crisis and help out in every way.  I will never be that sister, that daughter.

Before the RP, I considered myself to be such an independent person.  I went where I wanted when I wanted and I could be there at the ready for the people in my life, little black hatchback in tow.  I try to maintain as much independence as possible now, but let’s face it, life without a driver’s license in Los Angeles can leave you feeling stranded and sometimes a bit worthless to those you love. I want to be able to visit my mom’s grave when I am missing her or drive to a reunion with old friends.  I want to be a person whose life doesn’t have to be planned around their disease.  I will never be that person.

Morning

My eyes burn, feel swollen and starched this early in the morning.  The light through the curtains is like an assault. It is as if all the color and texture in the world has been bleached out. It is the first of my daily reminders that I am different, that I am going blind.  I usually lie in bed for a few minutes to allow myself time to adjust to being awake, and then I get up to make sure the curtains are all drawn in the front room; I can’t even look out the window without putting on my sunglasses because it burns so badly.  Perhaps vampires really just have RP and not a mythological thirst for blood.  I have definitely always been a night person, to the point where my family called me strange; they all love the sun. I came across a photograph of myself recently in which I was a three-year old on the beach squinting from the sun and reaching for my mom’s sunglasses.  Even then I wanted out of the glare and perhaps began to long for cloudy skies.  You can see why Los Angeles is my nemesis.

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