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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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Losing Your Parents

Diamond in a Vitamin Jar

My contribution to the November issue of Visual Verse has been published.  I have to add a caveat, once again, and say that I only had an hour to write this poem and it isn’t a masterpiece by any means, but the exercise is fun and interesting.   That said, my poem, “Diamond in a Vitamin Jar“, can be found on page 22.

Under the Lacquer – Part 2

I haven’t had the luxury of traveling or living in other countries, but what I learn from the people I meet in my regular, run of the mill life, enriches who I am and gives me images of a world I wouldn’t have without having met them.  I always feel like a person can give me a much better feeling of a place than a relic or even nature.

The entire time I have been frequenting my local nail shop, it has been managed by 2 sisters, Carol and Jean. The shop is a bit of a family affair; at least 2 other sisters and a cousin have worked there at one time or another.  They are a very close-knit family.

On one of the occasions when my regular pedicurist  was in Vietnam for a month, I had the pleasure of spending an hour and a bit with the older of the two sisters.  I didn’t know Carol very well at the time; I had gotten pedicures from her sister, Jean, and knew about Jean’s children and how they spent holidays together with all the family that lives in California, but I only knew that Carol was Jean’s older sister and that she often hosted these family holiday get togethers at her house.

That day, I ended up staying a while after my pedicure was over, and Carol talked to me about her life; her life before California. Two of the things I often ask people who I know are from different countries, are how long they have been in the states and have they only lived in California.  I find that asking these questions can often lead to someone sharing stories about where they are from; talking about life before nail shops and Hollywood.

I am not sure where in Vietnam Carol lived, but I do know that her husband was a soldier during the war.  I always felt as if the war must have profoundly impacted her  entire family, given the kind of bond that they all share. Carol didn’t talk about the specifics of the war itself, as Kim has, but she did tell me that her husband was part of a program that brought Vietnamese soldiers to the United States for asylum.  Carol’s husband was imprisoned by the VC for years and upon his release, he and Carol and their family were brought to safety.

It might be that Carol was able to bring most of the rest of her family here to California because she had been granted citizenship, but I may never know.  All I know is that most of the siblings are here, but her parents are still in Vietnam; at least one of the sisters goes to Vietnam every year to visit the parents, and this year they are all going because their father is 93 and very ill.

Carol is a remarkable woman.  The minute you meet her, you can feel her strength.  She is in charge and everyone around her knows it.  I felt really honored that she chose to tell me even a small piece of her story and I hope that I get a chance to spend more time with her and learn more about who she is and what has shaped her life.

I may never have the good fortune to actually travel to places like Vietnam, but I do have the good fortune of learning about and getting to know people who have come to California from vastly different countries and cultures.  I have learned that I don’t have to actually be in a place to feel it; I only have to take the time to get to know someone who has worn the fabric of that culture.

I guess I also, on some level, have to feel grateful for RP.  Although I think I have always had a curiosity and interest in people and their cultures, if I didn’t have RP, I may just be another Angeleno who spends their life in a car and in a hurry.  RP forces me to slow down and that suits my nature. I am grateful for all of the opportunities I have had and will have to truly know people who come onto my path, even if I can’t see them until they also take the time to slow down and come out of the shadows of the periphery.

January

I hate January.  It is a month of sad anniversaries and debilitating despair.  I am useless in January.  I gain weight and get drunk and climb under the biggest rock I can find. This January was no exception; but now February has rushed in and I am slowly emerging.

Just as I expected, when I came out of seclusion, my demons were there to greet me. They are like bad friends that I can’t shake, no matter how deeply I keep them, or myself, buried.  They are the faces of fear and grief, and no matter how much vision I lose, they do not seem to dim or fade.  I am sick of them.  I am on a mission to get them the hell out of my life.

I have been allowing fear to control my whole life and I have the power to stop it from interfering with my journey. I have been stuck in the pit of grief over the loss of my mom at 18 and my brother just a few years ago, and I have the power to feel it without allowing it to define me.   I have been isolating myself because of my limitations and my differences, but I know it is time for me to step out into the world and live beyond my limitations.

I don’t have any grand plans or schemes of recklessness, but the motions don’t have to be huge to be impactful.  I am ready for something new.  I am ready to believe in the beauty and the power of my voice and my words and my heart. I am ready to get un-stuck.

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

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.

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