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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 support

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!!!!!!

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.

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.

A Little More Each Day

I have been having a hard time finding the motivation to write lately.  My heart is breaking.

My brother was diagnosed with a very serious illness in May of this year, had surgery in July and has been suffering from one complication after another ever since.  I go to the hospital to see him almost every day, and every day my heart breaks just a little more.

His most recent stint has been about 3 weeks so far and he will most likely be there another 2.  My husband works at the hospital, so I usually go in with him around 2 and leave with him at 10:30.  I stay and sit with my brother.  I talk with him and watch tv with him if he doesn’t feel like chatting.  I knit while he sleeps.  I help him with his food tray and straighten up the hospital room. I find the nurse if he needs help.  I think about how unfair it is that such a good person has known so much suffering. My heart breaks.

I find myself wishing I could do more; wishing I could shoulder some of his burden.  All I can offer is company and love.  It never feels like enough.  I come from a family of doctors and lawyers and the higher educated; I am the artist, the freak, the black sheep, the blind girl.  Artists don’t read medical charts, freaks get frightened sidelong glances, black sheep never get heard and blind girls can’t show up at a moments notice.  But, I am also a sister. Sisters can comfort and reminisce, chat and laugh and get the inside jokes, share the childhood baggage, and simply listen. I savor every precious moment when it is just my brother and me.

But every night when I leave the hospital I feel frightened and guilty.  I don’t want to leave him alone.  I don’t want him to feel afraid.  I don’t want him to be sick.  My heart is breaking.

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.

Hero

We all have heroes; people we look up to for their courage, kindness and strength.  One of my heroes was just three years old when I was born.  He is my brother John.

John has always been one of the smartest and sweetest people I have known, but he is also the person who taught me what it means to be truly strong in the face of adversity.  From the time he was a little boy, my brother has been faced with more challenges than you would imagine anyone could handle. He has had too many rare illnesses to mention and through every battle he manages to stay positive.  He keeps his sense of humor and he soldiers on no matter what.  And he survives.

When I was diagnosed with RP, I thought about John and how strong he has remained through all of his hospital stays and mystery illnesses.  I looked to his example to help me weather the storm of the unknown that is RP.  I feel blessed to have him for a brother and so grateful for the strength and support that he has given me.  In the moments when I have felt so alone with my RP and so misunderstood, I have always been able to turn to him knowing that he get’s it….and then some.

I love you big brother.

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