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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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friendship

A Little Recorded Poetry

I have a new recorded poem up on YouTube, if you feel like having a listen. This one is the first of 5 originally published in The Writing Disorder. I hope you like it.


Little House (For Kat)

I am continuing my recorded poetry series with another poem that was originally published in Wildflower Muse.  Heather put out a submission call for work related to the theme of music, and “Little House (for Kat)” was what came from the inspiration of that theme.  Music has always been a big part of my life.  I grew up in  2 musical households.  My parents were both musicians and my brother, sister and I all inherited that love for music.  Music was also a big part of the longest and closest friendship of my life.  If you would like to read the published version of the poem, you can do so here.  You can also subscribe to my YouTube channel, if you’d like to hear more poetry.

 

 Little House
(For Kat)

You were 19 and I was 20,
living in a one bedroom apartment,
learning how to be inventive with top ramen.
We drank jugs of cheap wine,
chain smoked a grown up brand of cigarettes
and watched Little House on the Prairie re-runs.
My favorite were the seasons of Mary’s blindness.
We agreed it would be better to be blind than deaf,
long before I knew I was treading on Mary’s heels.
It was impossible to imagine living without the
chaotic rhythms and lilting tones of sorrow
that shaped our friendship.
You worked long days in a record store,
brought home shopping bags filled with
bootlegs and coveted early copies of new releases.
We crept around Los Angeles in your old red car,
memorizing the lyrics to Sinead’s new songs,
thinking up cool band names and
talking about affairs with older men.
You introduced me to Concrete Blonde,
got me hooked on Mary’s Danish and
spoon fed me Thelonious Monster.
You were with me in my first mosh pit,
where I was lifted out over the crowd
and lost my china doll shoes.
After seeing bands in the back rooms of
neighborhood guitar stores,
we spent hours in all night coffee shops.
You liked your coffee sweet, mine was always black.
I wrote bad song lyrics on napkins and
you created fortresses from salt shakers and creamer packets.
We made plans for the band we’d start some day.
Our life was marked by a sound track
of frenzy and shadows, a language
that brought us together,
but the blues crept up my back and
tore me away from our bastion
of skyways and melancholy.
Almost 30 years later, the record shop is gone
and you have moved across the ocean,
but the songs that conjure up our time together
will always send me reeling back to nightclub jitters.

 

 

Ships and Travelers and Feathers

I am overcome with emotion and joy today at the publication of my dear friend, Sarah Doudna’s poetry and fiction in the current issue of Mojave Heart Review.  Sarah’s voice is saturated with  a richness of clarity and an aching honesty.  She is one of my favorite writers and one of my favorite people.

Read and enjoy her story, The Ship, and her poem, Traveler.

In addition to being a brilliant writer, Sarah is also a ballet dancer and teacher, and you can find her on her blog, On the Way to the Barre.

Sarah, you inspire me to be a better, more courageous person and writer.  I am so grateful for you. You are kicking some serious ass, BB!!!!  I am so thrilled for you and so proud of you!!!!

The Year Through RP Eyes

I debated writing an end of year post.  I have been in what feels like an endless sinking, felt myself fading so rapidly as the days drag forward, bringing me closer to 50 and what I imagined would be an overwhelming disappointment in who I have become.  But, then I stepped back, allowed myself to refocus, to see beyond the sadness that I write about so frequently, and breathe in the joy of my life, which I probably don’t write about often enough. Continue reading “The Year Through RP Eyes”

The Writing Disorder

I am super excited to have 5 of my poems in The Writing Disorder!

 

Being a Writer

 

While reading a friend’s blog this morning (The Incurable Dreamer), I found myself thinking about what it means to be a writer.  She is a brilliant writer and has chosen to dedicate herself to it, which makes me happy for her, and for me, and everyone who gets to read her stuff. She gets what it means to be a writer.

I come from a family that is overflowing with achievement; there are doctors, lawyers, city planners and politicians, and then there is me.  Whenever I meet a friend of my parents (invariably another doctor), they always get excited and ask me if I am the “doctor daughter”, and then look uncomfortable and slightly disappointed when I tell them that I am a writer; when I tell them I write poetry, they can’t get away fast enough.  I don’t fit into the perfect package that my family represents and that makes people uncomfortable; and, ok,  having an abundance of tattoos may also factor into the discomfort thing a tiny bit, but I kind of love that.

Don’t get me wrong, my family is supportive of my writing (not so much with the tattoos), but for so long, I felt like being a writer wasn’t a viable thing because I hadn’t gone to school to study how to be a writer and because I wasn’t getting published in all the top magazines; I had no clear signs of accomplishment and that meant I was a big pile of nothing sitting off in the corner while my accomplished siblings were being praised for all of their hard work, as if I could never understand what it means to work hard. My parents and my brothers and sisters are all super amazing people who do work really hard and I am proud of them, but I am not nothing. I am a writer.  I am a writer; but what does that mean? It took me a long time to figure it out and to be able to talk about it with confidence.

For years, I struggled with the question of whether or not I was actually a writer and doubted myself whenever I told people that I was. I have written everything from poetry to one-act plays, but until recently my writing was sporadic.  I was a writer in moniker and desire, but not in practice. I wasn’t writing.

I didn’t believe I had the credentials to be a writer, so I went about trying to find a real job.  I found a thousand real jobs; some I liked, some I hated, but none made me feel fulfilled, or like I was doing the thing I was meant to do.  I knew, in my heart, that I was a writer.  I had been a writer since I was 6 years old when I wrote a Thanksgiving story about a turkey who commits suicide; it was called “The Sad Turkey”, and it was about a turkey who decided to commit suicide because he knew he would be killed for some fancy Thanksgiving dinner.  Pretty imaginative for a 6-year-old, right?

When I stopped working a regular job in 2009, I had big plans. I was going to write a memoir and get published; instead, I made a lot of popcorn and watched a lot of T.V.  When I started this blog, I was certain that it would be the answer to my writing woes; it would help me get my memoir done and get me published.  But, I barely posted; months went by and I didn’t go near the computer because I felt guilty for not writing blog posts.

I know now that I needed the time to adjust to the reason that I had stopped working a regular job; I had to give myself time to come to terms with the fact that RP had started to affect my life in more impactful ways and I wasn’t ready to write about it on a regular basis.  I had been given a gift of sorts, but I wasn’t ready to open it up.

Years went by and I still wasn’t writing regularly, even though I know that when I am writing I feel full and satisfied.  I had stopped writing poetry because I felt that it would never be lucrative and I really had no business calling myself a poet given that I have no formal education in writing.  The problem was that poetry is my first love, as a writer.  Poetry is where my pulse lives and it is what inspires me.

A few years ago, I decided to stop stressing about the blog and start writing poetry again. I felt inspired and satiated.  I wrote tons of poems and edited a bunch of old pieces; I got motivated and started to enter contests and submit my work.  I returned to the blog with a new energy and I dedicated myself to writing.

Degrees and  publication credits don’t make me a writer.  I am a writer simply because I write.  I have discovered that, for me, being a writer means doing the writing, fulfilling that part of myself that only writing can fulfill ; it is reaching into your darkness and your light, being brave enough to face whatever you may find there, and sharing those discoveries. Being a writer is hard work and often lonely work, but it is the work that speaks to me.

I am not nothing.  I am a writer.

 

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.

Secrets

We all have secrets that we carry around like tiny treasures waiting to be revealed; the anecdotal secrets that we pull out in conversation with casual acquaintances and the deeper darker secrets that we share  with only those who are closest to us. RP is one of my secrets.  It is a secret because to the casual observer I appear normally sighted; I don’t yet use any mobility devices and I have learned to get around pretty well, with only the occasional bump, spill or fall that inevitably gets blamed on clumsiness.  It isn’t something I intentionally keep secret anymore, it is just hard to know how and when to tell people.  Every time I make a new friend, I agonize over telling them about my disease and wonder if it will change the way they feel about me. It makes me feel different and broken and it makes me wish I didn’t have such a secret to tell.  But tell I must.

Sometimes the opportunity to tell falls into my lap. When I was first hanging out with my friend Patricia (check out her Etsy site, called Connie’s Girl, from my blogroll) I began to think about telling her almost immediately; I really enjoyed spending time with her and I wanted her to know why she was always the designated driver.  One afternoon, we were in the tattoo shop waiting for our friend Emily to mix her inks and get her needles ready and Patricia showed me the book she was reading.  On the cover was a picture of a tattooed bald blind man; the book is called Cockeyed and it is a memoir about a man who has gone blind as a result of Retinitis Pigmentosa.  No time like the present.  I looked up at Patricia and said” this is so weird, I have the same eye disease as this guy”.  The book is a great read by the way.  When I told Patricia, it was relatively easy and she didn’t gasp or fall on the floor or reject me as a friend; quite the opposite.  She is one of my closest friends and has been supportive and interested and totally cool about always being the designated driver. She also introduced me to the man who would become my husband.

When I met my husband it was like a fairy tale. I was reluctantly accompanying some friends to a New Years Eve celebration that happened to be at my husband’s apartment.  Little did I know when I walked in that night that less than a year later it would be my home as well.  I remember feeling incredibly nervous as I walked up the stairs to the apartment, although my friends had told me that Joe was one of the easiest people to be around.  I walked in and Joe walked out of the kitchen in his jeans and t-shirt and stocking feet, holding a cup of tea and greeting us with the warmest smile; I felt instantly at ease.  I shook his hand and turned to put my coat on the back of one of his dining chairs and when I turned back to face him he was holding my earring in his outstretched hand.  I felt like Cinderella. Two years later I married my prince charming, but before I married him I had to tell him my secret.

Of course I remember the fairy tale aspects of that evening, but I also remember the moment before I noticed that Joe had his hand outstretched with my earring in his palm.  It is the moment in which I recognize that expectant look in someones face, that occurs when they are handing me something that I don’t see; the moment in which I remember that I am different, that I should be able to see that outstretched hand but I have been robbed of the ability to flow through this life gracefully.  The moment is fleeting and quick; so quick that no one would ever know that I can’t see what is around me. It is also the moment that makes me begin to wonder when I will have to tell my secret.

The New Years Eve celebration was a success as it resulted in Joe asking me for coffee.  He suggested that we meet somewhere, but I had to tell him that I don’t drive; he didn’t seem bothered by my status as a non driver and I wondered how he would feel when I told him how I came by that particular status.  I knew I wouldn’t tell him on our fist date.  First dates are for getting to know the vibe of a person and sharing those anecdotal secrets.  I wanted him to see me for who I am and not just as some poor blind girl.  So, should I tell him on our second date? Or our third?  I didn’t know.  I was afraid.  Afraid of scaring him off and being defined by my blindness and getting rejected.  But I knew it wasn’t fair to keep my RP from him for too long, so after we had been on three or four dates, I told him.  Joe didn’t bat an eye.  He said ok and gave me a kiss and we went out to dinner.  I guess he thought it over and decided he liked me, RP and all, because a year and a half later he asked me to marry him.  Joe had been my support and my love and my very best friend.  He has gotten involved with fundraising for research about RP and knows way more about all the current research around the world that I ever have.  He is my champion and I am forever grateful that I ventured out on that New Years Eve.

In the three years that Joe and I have been together, my vision has been stable but I have had to stop working and am now on permanent disability.  Keeping the secret at work was too much effort and I often came home at the end of a work day in tears, because the pain in my eyes was so severe.  I couldn’t take the glare of the computer and the neon lights.  I was also constantly exhausted from over compensating to hide the fact that I couldn’t see.  I remember one particular all day meeting that took place in a room that had a wall of windows facing an outdoor courtyard.  The sun shined in through the windows and everyone was delighted to be having the meeting in such a lovely spot, but I was devastated.  I knew I would have to wear my sunglasses for the entire meeting and that I would get comments.  I wasn’t disappointed.  At the lunch break, one of my co-workers approached me and said,” I guess you always have to try to be cool, wearing your sunglasses in a meeting”.  I just smiled and jokingly replied, ” I am always cool”.  Inside I was mortified and pissed off at what I felt was the total insensitivity of my coworker, but she didn’t know I was going blind.  I always made a point of telling my supervisors and closest colleagues that I have RP, but I didn’t think it was a secret everyone needed to know.  I continued to work for four years after this incident, coming home at night in pain and in tears and feeling constantly afraid that the people I worked with would discover my secret.

I feel such a sense of relief now that I no longer have to work and try to blend in with the sighted people in the working world.  I have become much more willing to tell people that I have RP.  I write about it and talk about it.  I explain why I don’t drive and I ask for help to get across a crowded room. I live with the bruises that come with crashing into a world that I don’t see.  I accept that I am going blind but I also admit every single day that I wish I could, just for a little while, flow gracefully through this life.

 

 

 

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