Search

Stories From the Edge of Blindness

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

Tag

Family

I Am Not Blind When I Close My Eyes

I have been writing about a storm, hiding behind the clamor of the rain. I have been watching my feelings twist into the drain, willing away their texture and weight. It is futile; this hiding, this twisting, this willing away. I am sinking but standing still, static but being torn to pieces. I can no longer see who I was and I can’t remember who I wanted to become. I used to feel the fleeting joy of sparks on my fingertips. Now, it is just a dullness, an ache. All I want to do is run away. The gloom swallows my steps every time I try and escape.

I haven’t wanted to write about my father; maybe because I was afraid that if I wrote about him, I would lose all hope of escape from the grief. But, I know better. There was never any hope of escape. My father has dementia. Every day, I grieve him, a slow grief. He fades the way my vision fades, pieces of his memory growing dark, trapped in shadow. I am consumed by sadness and a constant feeling that I am failing him, because of my limitations, my blindness and my inability to put my emotions aside, to give even the perception that I am not coming unglued.

I wanted to at least start to share this story today, but even tearing away a small piece feels like a betrayal. I am exhausted and haven’t felt the earth of my life in so long. My voice is numb and I feel emptied out, blank. There is no path. No direction. No light. There is only the weight that comes with watching him forget the shape of his life, knowing that he has forgotten my name, and will one day forget who I am.

For 3 years, I have been watching him become someone else. In many ways, I am closer to him now than I was when his brain was crisp and unclouded. I can finally be what he needs. I finally have value. But, I am losing myself. Joe and I are the only ones who are here, living close by and helping. We have been so alone in this and I am afraid of the tole it is taking on Joe. I don’t talk or think about much else; it is as if I have stopped breathing, as if I am disappearing not only from my father’s memory, but from the grasp of my own life. I have abandoned my writing, but I have come to peace with that. I am doing what I have to do, for now.

I am unsteady, unreliable, untethered. But maybe, for just a moment, I can believe that when I close my eyes, I am not blind.

I Don’t Do Sick Well

I am sick.  Nothing serious, just a cold that won’t seem to go away, but I don’t do sick well.  No one likes being sick, I get that, but when I get a cold, I act like the world is crumbling.  I wasn’t always like this.  I used to get sick and ride it out and never talk about it.  Now, I am not only talking about it, but writing a blog post about it.  I must sound pretty crazy, or like a total princess.  Either way, it’s not cool.  I need to figure out where my tenacity and grit escaped to.  Thanks to my Dad, I think I have an idea.

I was visiting my Dad 4  days ago, the day the beast cold started attacking my throat, and I mentioned that I felt like I have become super sensitive to just a simple cold, making a huge deal about a sniffle or two.  He told me that he thinks I may feel like any physical ailment is just one more fucking thing on top of the big thing, the blind thing.  And, yes, he did say the F word; I come from a family who use expletives freely.
Continue reading “I Don’t Do Sick Well”

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.

 

 

 

Embers

The thing with fire is that it is unpredictable.  An ember can become a rage of flames that devour hillsides and homes, a torrent of fear that reaches its fingers into the sky and covers the landscape in ash.  Fire doesn’t discriminate; it can’t be reasoned with or cajoled.  But, it can be contained, by the tireless bravery of fire fighters who battle an enemy that knows no mercy.  I am so very grateful for all of the men and women who have been fighting the fires that filled Los Angeles with smoke and fear; it is because of them that the beast has been quelled.

My parents are safe and the home that they have shared for 41 years is intact.  It was a terrifying few days; first waiting for them to evacuate and get to my apartment.  I was so glad to see them safe when they pulled into our driveway.  Then we waited for news about their house and for the announcement that they could finally return home. My parents are in their 80’s but they are strong, resilient and incredibly stubborn; when they left my apartment last night, they were pale with exhaustion, but so relieved to be going home.

Sheila-Na- Gig Winter Poetry Contest

I am thrilled to have been selected as the winner of the Sheila-Na-Gig Winter Poetry Contest. The issue is now live! Thank you to Hayley and Jessica for this huge honor!

Writing Sample Part 4 – Surrender

It’s impossible to think about going blind without thinking about loss.  When you have a degenerative disease like RP, the loss comes in unpredictable bursts that steal pleasures and pluck freedom from disappearing fingers.  In the weeks just after my diagnosis, I thought a lot about how my life would change and what blindness would take from me; I was most afraid of losing the ability to read the printed word.

 I have always loved words; the way they can simultaneously smooth and sharpen the page. A life that leaves me unable to see the printed word is unimaginable.  I feel paralyzed by the thought of no longer seeing how the shapes of the words meld and flow.  I wonder what kind of writer I will become when the pages turn dark. Perhaps I will learn to rely solely on the musicality of language; the taste of the words in my mouth and the feel of their vibration on my lips. I am sorrowful when I think of no longer taking the words in with my eyes, but I will read voraciously until the darkness has swallowed them up.

Although the loss of the ability to read was my greatest fear after RP became part of my life, one of the most significant rites of passage in an RPer’s life is giving up driving.  I was a terrible driver, for now obvious reasons, and always felt anxious behind the wheel, but I have definitely felt the loss of freedom since I gave up my car for less convenient forms of transportation.

Because one of the first things that alerted me, and the doctors, to my RP was decreased night vision, the consequential difficulty led me to stop driving after dark immediately following my diagnosis. The combination of the darkness and the glaring lights of oncoming cars made it so I simply couldn’t see well enough to drive safely. In truth, it hadn’t been safe for years:  I had just been lucky.

I had also, in daylight hours, had several run-ins with walls, poles and curbs that seemed to jump out at me from nowhere.  This started serious contemplation of whether I should continue driving at all.  Walls and curbs only hurt my car, but what if it was a child or an animal that I didn’t see?  I couldn’t bear the responsibility of hurting someone just because I didn’t want to give up my car; so, about seven months after my diagnosis, I gave up driving altogether.

When I decided to give up driving, I chose to surrender my license and make the rite of passage official; I had no reason to hold onto it when I knew I would never drive again.  I needed to make it real.  I suppose it was my way of dealing with the loss head on, not allowing myself to live in denial about the gravity of my disease and how it was going to continue to change my life.  I was empowered because I took charge of the decision and I knew I was doing the right and responsible thing.  I felt the loss, but it was intermingled with a sense of relief.

It the first couple of months without my car, I joked about how lucky I was that I never had to be the designated driver and how I had always been a lousy driver anyway, so no big deal that I would never drive again.  True statements, but I also started to see how my disease was a burden to the those around me, and how I was going to become less and less practically useful as the years and the RP progressed.

I hated listening to my family agonize over who would drive me home after a family dinner, knowing how tired they all were.  I hated knowing that once I arrived somewhere, I was stuck until someone else was ready to leave; I had lost the freedom to come and go as I chose and because of this I became more reclusive.  I didn’t want anyone to have to take care of me.  I was determined to take care of myself.

My family never complained and I knew that they were just trying to make things easier for me, but I needed to find a way to assert my independence.  I had always had a fiercely independent nature and I wasn’t going to let RP rob me of that.  So, I learned the ins and outs of the LA transport system, which is no small feat given that it is the worst in the country.  I remember the first months of riding the bus, looking out the window at the enraged faces of the drivers in their cars, and feeling lucky that I got to spend my ride home listening to music, far away from the stresses of road rage and blaring horns.

Surrendering my license ended up saving an important part of who I am, and showed me that my determination means something.  And let’s be honest, L.A. busses are full of stories dying to be told.

Rejections Aren’t Created Equal

Even though I talk about only needing validation from myself and how the writing is enough – and I do believe these things – I still have those aching moments where I search for validation from the outside, and feel crushed when I don’t get it. I guess my rejection skin isn’t quiet as intact as I would like.

The thing is, all rejections are not created equal; and it happens that the last two I got really fucked with my head.  The first I wrote about in my post Rejection Skin, the second was just a few days ago when I got turned down for a fellowship.  It was the first time I had applied for any kind of fellowship and I have to admit, I actually believed I had a shot.  The fellowship is The Emerging Writers Fellowship through PEN America; it would have been 6 months of writing classes and private mentorship and networking – it would have been great.  Apparently there were an unprecedented number of applicants this year and only 5 spots available, but that doesn’t make me feel any better. Why wasn’t I one of the five?

When I got the email telling me they were sorry to inform me etc. and blah blah blah,  I told my husband I was ok because I had been feeling like I didn’t really want to make the commitment anyway, but later that evening I started to get really upset.  I realized that the fellowship represented a kind of validation that is different from getting published.  I come from a very high achieving academic family, and because the fellowship would have been an academic thing, I believed it would validate me in my families eyes.  I felt so ashamed to have failed and I didn’t want to tell them.  This rejection went much deeper than a lack of confidence in my writing; it triggered old feelings about whether or not I have any value as a person. I know that the shame is about my own perceptions of how I don’t fit into my family, but those perceptions have roots that are stubborn and strong.

My feelings about this rejection were also tied to my RP. The project proposal I gave for the fellowship was basically turning “Stories from the Edge of Blindness” into a book; it was everything I have been writing about here for years and all the ideas I have had about telling my stories; the rejection made me feel like my experiences are insignificant.  Basically, this rejection knocked me to the ground.

It has taken me a few days to bounce back, but I have come away from the blow with some renewed strength and resolve.  I am not looking to be told that my writing is great; what I write and how I write isn’t for everyone, and that is ok, it doesn’t have to be.  Fellowship committee members and editors and publishers are all people with specific tastes, just like me and every other person on the planet; they may not like my work and I may not like what they write, but isn’t that the beauty of art?  If all art appealed to all people, it wouldn’t have the profound impact that it does.

I am not looking to hear that my experiences and stories matter to the world; they matter to me and I feel like sharing them.  I know that outside opinions don’t validate me and that my family loves and supports me because of who I am, not how accomplished I am in the world.  If I want to, I can apply for the fellowship again next year, or not; either way, I won’t stop writing.  It is who I am and what I choose to do.  I am excited by words and the magic they weave, so why would I deprive myself of writing just because someone I don’t know doesn’t like my work?  I know there will be other rejections that hit a little harder than most, but now I know that I can deal with them and that I will always keep writing.

 

4 Years

Today is the 4th anniversary of my brother’s death.  He has been on my mind more than usual this week and I woke up this morning feeling like it must be impossible that he has been gone so long. I can’t believe that I am now the age he was when he died. Where have all the days gone? I miss him so much. I really could have used my big brother’s advice with the whole Zelda thing (Zelda is my white cane).

John(that’s my brother) was sick on and off from the age of 18 until his death at age 48.  He knew more than most what it meant to feel different and defeated, but he had a determination that I have rarely seen.  We weren’t close as kids; I was the one who swooped in and usurped his title of youngest child, and he had absolutely no use for me, but in the last years of his life we had truly become friends.

We both loved Harry Potter and saw almost all of the movies together.  While waiting in line to see “The Half Blood Prince”, a group in front of us kept growing; people coming into the line gradually to join the two girls who had been there from the beginning. John and I had been there for about 4 hours ( we were dedicated), and John was not happy about all the people arriving late and essentially cutting in line.  When the line finally started moving, the now pretty big group ahead of us had to gather their blankets and backpacks and purses, so John grabbed my hand and raced up to get ahead of them in line.  One of the girls had the nerve to call us out on it, so John turned around and told her that she had joined the line late and we had been there the whole time, so tough shit. She replied by saying that everyone one was doing it, and John said,” If everyone jumped off a cliff, would you do that?”.  It was a wonderfully old man kind of thing to say and I loved him for it.  I loved watching him stand up for us.  I wish he was here so we could reminisce about that day.

Maybe two or three years after my RP diagnosis, I was feeling sorry for myself, lonely and misunderstood, and I made a comment about how no one in my family could possibly relate to what it felt like or what I was going through.  Later that day, John came to sit with me at the dining room table and told me I had hurt his feelings by what I had said, because he understood.  He understood what is was like to feel loss, to feel afraid and different and alone.  I knew in that moment that neither of us were alone.  I learned in that moment what it meant to be brave. I saw in that moment how much John had been teaching me all along, about strength and kindness and honesty.

I am lucky that John was my big brother and so grateful that we became close and that I really got to know him, but I wish he was here so I could tell him how amazing he was and how much I miss him.

 

Poem in Foxglove Journal

I am thrilled to have my poem, “Rose Tinted Glasses” in Foxglove Journal.  My thanks to Elizabeth Gibson who has created a beautiful journal.  I am honored to be among the writers she has chosen to publish.

 

Create a free website or blog at WordPress.com.

Up ↑