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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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Family

Loss

I have been away from my creative self for so very long; consumed by grief and struggling under the weight of loss.  For almost three years I have been defined by illness and death.  I assumed the roles of watcher and caretaker.  I gave over my heart and my strength.  I don’t regret it.  I truly got to know my brother and to show him how much I loved him.  I wouldn’t have chosen to do anything else but be there for him, as a friend and a sister and to try to quell his fear.

Now that he is gone, I am led, inevitably, to thinking about how much of my life has revolved around loss.  Loss of loved ones, loss of freedoms and of course, loss of vision.  There are so many things that just aren’t there anymore. It is as if my mother and my brother and the edges of the world have fallen into an abyss that I will never be able to gaze upon or reach.  I realize how losing my vision is so much more like a death than I had ever known; they are both disappearance, silence and blackness. Some days it is as if I have forgotten that my brother has gone and I pick up the phone to call him and tell him about a new mystery show I have found that I know he would love; I forget how much of my vision is gone and I walk along the sidewalk as if I can see the whole world, until I  fall into shadow and watch the sidewalk fade away.

Perhaps I fall into these moments of forgetting so I can cope with all the other moments; when I wish that I could hear my brothers voice, feel my mothers comforting arms and look into the brightness of the afternoon.

Twenty Five

25 years ago today

I watched strangers lower my Mother’s body into the ground

The soil swallowed up her oak and pink satin

Final place of slumber

Heavy and cold

Not a place for a woman whose laugh lit up rooms

Whose touch soothed even the deepest aches

I lost my breath and my heart

I broke into pieces

That scattered in the rain

For 25 years I have been collecting them

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.

Between the Barbs

While reading over some of my more recent posts, I kind of wanted to tell myself to stop bitching.  I suppose that I have been in a bit of a barbed mood lately, but there are wonderful things that happen between the barbs.

On the day of my RP appointment, my husband had jury duty and so couldn’t come with me.  He was waiting to hear if he had been selected and I was waiting to hear if he would be able to pick me up after the myriad of eye tests.  After the final eye exam with Dr. Sarraf and just before my last test ( an OCT), I got a text from my husband telling me he had been released from his civic duty and would be able to pick me up.  I was so happy and so excited to tell him of the positive outcome of my appointment.  I also got a text right about the same time from my dear friend Patricia, telling me that she was thinking of me and sending her love.  I felt loved and supported and I knew I wasn’t alone in my bizarre vision journey.

When my husband came to pick me up, I got into our truck and told him the good news and he became very emotional.  I have never felt so loved and cared for in my life. He seemed even happier than I was to hear that my vision is stable. I know that no matter what happens in this life, I have him with me to share all of it and I feel like the luckiest woman in the world.  He makes me feel like I have value, sighted, blind or in between.

When I checked facebook later that evening, another of my very close friends had posted something asking how my appointment went and two of my other dearest friends wrote the most beautiful comments here on wordpress.  I knew they were thinking about me and were genuinely happy to hear that all was as good as could be expected.

I feel loved and blessed and so fortunate.

Regarding another subject, The Sun: I know I write a lot about the sun and the heat and not entirely loving my current city, but I also have to say that all the time I spend indoors is in an apartment that I love.  It is the home that I share with my husband and it is my very favorite place to be.  I also have a lot of people in my life who are super generous and always offering to pick me up or drive me places, and my husband would be there in a heartbeat if I needed him.  And, my husband also hates the sun and the heat so we are entwined in a joint mission to move to a cooler climate.

Although I sometimes feel so very alone in this slow trek to blindness, I know that I am not really alone.  All I have to do is reach out and there will be arms to comfort me.

On Days Like Today

In a few hours I will have my head in a big white dome, pushing a button when I see red lights flash.  I am feeling particularly anxious about my visit to the specialist this year, which I suppose is clear as I have written about it for the past few days.  I feel a combination of fear and dread and it is on days like today that I miss my Mom even more than usual.

My Mom died 24 years ago, long before my RP diagnosis.  But, I know if she were here she would be comforting me.  I miss the feel of her arms around me and the soothing tones of her voice.  I miss her unconditional love and support and the way she could always make me laugh even when I felt afraid.  I remember her singing me funny songs as we drove to the dentist, because she knew how terrified I was; I wish she was here to sing me a song today.

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.

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.

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