Stories From the Edge of Blindness

In 2002, Retinitis Pigmentosa changed my life. This is my story of a slow approach to darkness.


July 2012

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.

I Feel Sweaty, Oh So Sweaty

After I surrendered my driver’s license and was forced to become reliant on the completely unreliable transit system in Los Angeles, I  discovered that my days of dressing up and actually arriving places looking and feeling nice had disappeared right along with my sight and my ability to drive a car.

Los Angeles is hot and the damn sun never seems to stop shining.  Most days, I avoid going outside while the sun is raging its assault on the dusty streets, but venturing out is sometimes necessary.  The venturing days usually require some lengthy exposure to the sun and the heat, which offend not only my eyes, but also my skin and all the beautiful artwork that covers it.

Getting ready to go out always seems to take me forever, and it isn’t because I am getting dolled up but because I am trying to swallow my dread. I don’t like the feeling of sun on my skin, so when I go out, I get covered up. I prefer to wear long sleeves to protect my tattoos and a hat to protect my eyes.  I usually procrastinate by the door because I know the minute I open it, I will begin to sweat.

By the time I reach the bottom of my stairs and head out into the street, I already feel like I can’t breathe.  The sun overtakes me in a wave of utter misery and begins to suck the moisture out of my pores.  Every part of me feels sweaty.  I know my face must be taken over by a total look of disgust and the only thought in my head is getting out of the sun and into the air-conditioned shop or bus.

I know there is no possible way I will arrive at my destination looking anything other than damp and miserable, so I don’t even try to look good.  I don’t put on makeup or wear nice clothes. I don’t bother doing anything with my hair because even my head sweats and the hair sticks to my face under the constraints of my hat. I have forgotten what it feels like to dress up and go out to have a day of shopping or a quiet lunch by myself.  I only know the sun and the heat and the sweat.

I don’t mind sweating during appropriate activities like working out or gardening, but arriving at a restaurant in a pool of sweat just doesn’t seem right to me.  I know that there are more important things than dressing up and going out to lunch, but I miss feeling good about doing it.  I miss feeling pretty.  And most of all, I miss feeling free of all that horrible sweat.



Elation Eludes Me

I think I am seriously messed up.  I feel as if I should be elated to have learned that my RP is progressing so slowly, but instead I am feeling despondent.    It isn’t as if I wanted to hear bad news and I do, of course, feel very fortunate to be maintaining the sight that I have, but I also feel sad.  Perhaps it is because there is a sense of being back at old square one.  It is great that nothing has changed, but nothing has changed; I am still the same almost blind,  chubby girl living in the Purgatory of Sight.  I am neither this nor that; I still feel like nothing.

This may sound as if I am swimming in self-pity for no damn good reason, but this set of feelings exist for me outside of self-pity.  I think it is more self questioning.  If my vision is stable, then shouldn’t I be working and living and functioning the same as normally sighted people? If it isn’t total tragedy then be quiet about it and just try to forget. The problem is that I can’t forget because I still only have about 20% of my peripheral vision and that just isn’t enough for me to pass as a normally sighted person.

So, it seems that Purgatory is my fate.  It is what I live and what I write about.  It is where I feel stuck.  It is a place filled with fear and so much of the unknown.  Purgatory is where I learn and love.  It is a place before the darkness where hope is allowed to exist.  Purgatory is the place in which, today, I feel blank.  But, it is my place.

Still Stable After All These Years

The appointment with my RP Specialist yesterday rendered an extremely positive outcome.  He told me that the disease hasn’t progressed in the two years since I last saw him, which means that my vision has been stable for 7 years.  I felt such relief after a week of feeling so afraid.  I shed a tear and showered Dr. Sarraf with gratitude. I  felt the tension drain from my body.

Dr. Saraaf also told me something I hadn’t heard before.  I asked him if I was just lucky that my RP progression has been so slow and he told me I may have a milder form of the disease.  He said that some forms are very aggressive and others progress very slowly.  I felt lucky when he relayed this information; lucky that in the world of RP, I have been given extra time with my eyes.

Now, I will wait for what the next two years brings and hope that I continue to be lucky.

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.

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.


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