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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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marriage

Beyond Shades of Grey

I never believed that the act of living happened in black and white.  I thought it happened in all the shades of gray, the spaces in between, the cracks and caverns and hidden places.  These past few weeks, I have felt life happening in all the colors that live inside the marrow of my heart, seen that the hidden spaces aren’t grey at all.  Through blindness, I have learned to see the colors and contours of pain and grief, love and joy, so much more vibrantly than when I was simply looking and unaware of what could bloom from the shades of grey, what lurked inside.  It seems cliché to say that through blindness, I have learned to see, but it is true in so many ways.  I have not become enlightened.  I have not become kinder or smarter or better.  I have just stopped looking, and in doing so, life comes into focus so much more clearly than when I took my eyes for granted, or time or space or love.  In just this week, I have felt desperation, compassion, depression, anxiety, affection, love, joy, contemplation, appreciation, despair, bitter disappointment and gratitude.  I have wanted to die and wanted to try to stay alive one more day. I have wanted to venture beyond what I know and I have longed to stay perfectly still.  I have done something new, and fallen back into old patterns that feel familiar and safe.  I have lived so many colors in just one week, not because I strived, but simply because I continued to exist. Continue reading “Beyond Shades of Grey”

The Irishman

I don’t often write love poems.  I have written only a handful and they are all about one person. He is a man who has Ireland running through his blood and a heart that beats with a strength and rhythm that makes everyone around him feel safe.  He has faced grief and adversity, but has always persisted, always lived with a true voice and the courage to be exactly who he is.  He is the embodiment of kindness and generosity.  He brings laughter and pure joy into the world around him. He is at once brave and vulnerable, a man who takes care of everyone with gentle patience, and a boy who is delighted in the world of Doctor Who and Batman and video games.  He loves science and technology, isn’t afraid of the future and has a mind for building things.  He is a teacher and a scholar of life.  He is a friend and a strong shoulder to lean on.  He is my husband and my good fortune.  He is my champion, my safe space, my home.

Happy Anniversary My Love!

Seasonal Voice

I wasn’t going  to write about Christmas, but here I am at 6am on Christmas Eve morning, reading lots of posts about Christmas, and I felt like adding my seasonal voice to the mix.   Let me start by saying, I love Christmas!

When I was a child, my Mom adored being festive; she had boxes of decorations for every holiday and made sure that the rooms, windows and exteriors of the house were appropriately adorned.  Christmas was her favorite; although Halloween did run a pretty close second.  Every year, upon the arrival of December, my Mom would open the plethora of Christmas boxes, overflowing with elf figurines, tiny trees, dancing Santas, lights, paper cutout snowflakes and every other (non religious) Christmas decoration you could imagine, and transform our house into a seasonal feast for the eyes.

During the first week of December, she would bring home the tree.  She lit a fire and made pots of tea and we spent the day decorating the fragrant branches with ornaments that had been around since before I was born.  My moms exuberance about the holiday was catching and we couldn’t help but be swept away in it; she made the entire month of December shiny and joyful and fun.  We celebrated the season and the month of December, not just one day.  It was a celebration of life and of love; it was a time to wrap up in the comfort of home and family.  We were lucky.

My Mom never lost her love of Christmas, even when she got sick.  I was 13 when she was diagnosed with cancer, but even in the years when she was the sickest, she had a magical ability to conjure up joy.  For her very last Christmas, my mom was in the hospital, but she insisted that we celebrate.  We brought Christmas to her hospital room and she, as always, brought love and light.

8 days after Christmas, my Mom died.  For years, I couldn’t celebrate Christmas, and when I tried, it felt empty and wrong.  It was as if the light of Christmas had been extinguished with my Mom’s light. After her death, I slipped into darkness; I couldn’t breathe or feel anything.  Christmas became something to dread, because she wasn’t there to make it beautiful, to bring it to life.

I turned my back on Christmas, rejected its trappings and merriment, but time and love eventually brought me back into the arms of the season.  I came to a place where I could feel grateful for having known and loved someone as magical as my Mom, rather than just feeling the pain of her absence.  I started thinking about how lucky I was to have had a Mom who made Christmas so special. I was slowly coming around, and then, 9 years ago, I met my husband and found myself actually getting excited about Christmas. With my husband, I found joy and home, and I wanted to share a little bit of my Mom’s magic, which, I realized, had been with me all along.

 

 

 

Eyes on Fire

At the end of my last post, I left you in the hallway after leaving ERG hell, and my eyes were useless……

The light in the hallway was incredibly bright, an assault on my dilated pupils, but all I saw was brightness through a haze. I put on my sunglasses and my hat, but the light was still unbearable.  I knew I was going to have to use Zelda to help me find my way up to the lobby and outside to meet Joe.  I didn’t hesitate; I unfurled her, got into position (holding her grip in handshake position, right arm extended out at the middle of my body), swept Z out to the left and took a step with my right foot.  I felt confident and walked down the deserted hallway at a pretty good pace. I had a visual reference from when I had come down to the basement for the test, so that made it easier to get back to the elevator.  All I could see was white, like I was in one of those asylum rooms that are in the movies to emphasize the crazy in a person or a scene.  I felt so grateful to have Zelda with me at that moment.

Every time I use the cane, I feel more confident and become more familiar with her nuances.  I can now actually imagine how it will feel when she is an extension of me rather than a marker of my disease.  I feel myself easing into a rhythm with Zelda.  We made it up to the lobby and out the front doors to wait for Joe in a shady spot.

Even from the shade,the sun was more painful to my eyes than the light in the building, so I kept my eyes closed, leaning on Zelda for support.  Joe had parked the car in a lot 6 winding blocks from Jules Stein Eye Institute and we were going to walk back to the car together.  When I opened my eyes to take a peek and see if Joe was coming, I saw him walking up the ramp.  I couldn’t help but wonder if it made him sad to see me there with Zelda, but he actually seemed proud of me.

The walk to the car went well.  I had Joe guiding me expertly on the left and Zelda in my right hand, so I was well covered.  My eyes had begun to sting pretty severely, so I kept them closed for most of the walk, thinking it was the sun that was causing the burning.  It was the first time I felt somewhat relaxed being out with Zelda .  Of course Joe was with me and he always gives me confidence and a sense of safety, but I was still really happy with the way I felt and the flow that I had with Z.  I felt progress and that felt good.

By the time I got into the car, the burning in my eyes was almost unbearable and I discovered that it was actually worse when they were closed.  So, I opened my eyes, but hunkered down under the huge brim of my hat to protect my still dilated pupils from the sun.  There was no relief and rubbing my eyes only made the burning worse; but I was compelled to rub them to try to force the burn out. Nothing helped and I started to panic.  It was a very long 40 minute ride home.

When we finally arrived at our apartment, I rinsed my eyes with an eye bath solution, but this only provided relief for about two minutes.  I tried to rinse with cold water, but that intensified the burn.  I was exhausted and just wanted to go to sleep, but closing my eyes was not an option.  I paced around my house and bathed my eyes every ten minutes, but the burning continued.  Then, I started to feel a sandpapery dryness under the burning.  I was freaking out.  The ERG was torture enough and now it appeared that it would continue for hours.  It did.  My eyes didn’t start to feel better until about 10 pm that night, 7 hours after the ERG.

When I woke up the next morning, there was a weird crust all around my eyes, but the burning had stopped and my pupils had gone back to normal (RP normal anyway).  I really hope I get at least another ten years before having to enter ERG hell again.

 

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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