Search

Stories From the Edge of Blindness

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

Category

Siblings

I Become the Noise

In a split second, the weight of my mind can become unbearable.  The feeling of my skin disgusts me.  I remember everything that makes me ugly, all the anger and how I have hurt people.  I start thinking about everything I have lost.  I weave myself into the fabric of lies I believe in, as if they are prophecy.  I become the nightmare. I become the noise. Continue reading “I Become the Noise”

Increments of Five

Why is it that we give monument to increments of five? Why do five and ten hold more weight than three or seven?  The fifth anniversary of my brother’s death just passed and five years feels impossible.  I have this disbelief that he is gone, and at the same time, feel the unbearable weight of his absence.  How can he be dead?  How can five years have gone by? How is it that life just continues, as if time forgot the sound of his laughter and his suffering?   Continue reading “Increments of Five”

Burning House

I am thrilled to have 3 of my poems in Burning House Press today!!!!! My huge thanks to June editor, James Pate! If you want, you can read them here.

 

Coming in Last

I spent 2 of my high school years in Carbondale, Colorado.  It was beautiful. But, that is another post for another day.  Anyway, on a flight from Denver to Los Angeles,  when I was about 15, I had a conversation with a woman who I will never forget.  She talked to me about birth order and the significance it has on personality and life choices.  Like me, she was the youngest child, and although she was probably about 30 years older than me, I found we had a lot of similar characteristics, and that we saw our older siblings in similar ways.

I was the youngest of 3. Continue reading “Coming in Last”

Fraud

I am a lazy blogger.  It probably isn’t a secret.  Most of my posts are unpolished and clearly just an unwinding of something within me.  Lately, they aren’t even new, just links to things I have already written that are appearing elsewhere.  In truth, I haven’t been writing a lot the past few weeks; I write every day, but some days the words are few and feel miles from anything remotely palatable.

Most often, here and outside of the blog, I write without direction.  I don’t do research or develop plot lines.  I put in the time and the work, but I let the words themselves guide me. I revisit them and change them, smash them and polish them, especially with my poetry, but I don’t approach them with forethought.  I suppose the unwinding is simply my writing process, but this saturates me with self-doubt; I always return to the idea that I must be doing it wrong, that I don’t have the tools to do it right.  I am terrified that I will finally discover what I have feared all along, that I am a fraud.
Continue reading “Fraud”

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!

Mortal

My poem, “Mortal”, was published in WildFlower Muse in March of 2016.  I am posting it today in honor of the anniversary of my brother’s death.

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.

 

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.

Create a free website or blog at WordPress.com.

Up ↑