Tag Archives: alone

Living within the isolation of myself.

14 May

We moved from Pahrump, NV to Round Rock, TX on October 1, 2009.

By the time we moved I was exhausted. Mentally exhausted.

Living in that desolate island of fear, tears, sand and mountains had completely depleted me. I felt so alone. Although my mom only lived a few minutes away and my husband was with me…I was alone.

I had submerged myself so deeply in self-pity and self-hatred, blame, guilt, remorse, and those constant day dreams of what might have been, I was beyond reach of anyone else. I was alone in a dark, sad, tear-filled cocoon of my own making.

I couldn’t wait to move. I had pushed everyone away. I would talk with my friends, listen to stories about their children, the whole time thinking to myself “You don’t understand. You just don’t understand how hard this is for me.” They didn’t understand. Because I never told anyone. Moving seemed like the best solution at that point. I thought that if I changed my outside, if I changed my zip code, that it would change the way that I felt.

I had convinced myself that it was all because Oli didn’t have enough support. That it was because I didn’t have enough support. It was. But, it wasn’t. Oli did need more help with people experienced in blindness, but I had some support. I just couldn’t see it then.

I had met and made friends with other moms who had visually impaired kids. I had become good friends and remain friends with some of them. None of them were totally blind though. I had led myself to believe that because their kids weren’t totally blind, that they didn’t really understand what it was like.

I had made it US vs. THEM.

I had isolated myself even against the people who knew what it was like. I was looking for all of the differences in our lives rather than the similarities. I think some part of me enjoyed that feeling of isolation. Some part of me liked feeling sorry for myself and enjoyed believing that I was the only one in the world who felt the way that I did. That no one could possibly understand my struggles.

It just simply wasn’t true though.

LOTS of people knew how I felt.

If I just would have stopped for a second and looked outside myself, I would have seen that. I would have seen that I had people surrounding me that wanted to help me. They wanted to understand what I was going through. If I would have made myself available to them…if I would have made myself a little vulnerable…I would have seen that.

I didn’t.

I didn’t when we lived in Nevada and I didn’t when we first got to Texas.

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Can You See Me? I’m Here In The Darkness. (Part 2)

23 Feb

As I continued my experience randomly selecting food and taking small fearful bites (you never know when they would sneak in another olive, or infinitely worse, a bit of cilantro) I start listening to the conversations around me. I turn my head to the left and listen.

Perk. No one could see that I was eavesdropping.

They were talking about what brought them here tonight. Most people had just heard about it and thought it would be an interesting thing to try. I speak up and say that I have a blind daughter. They start asking me questions about her and want to know what she has to say about blindness. I explain that Oli has autism and doesn’t talk. A woman across from me and to my left starts to tell me about her friends daughter who is also autistic. We are interrupted by a loud voice behind me.

“Seth’s wife? Seth’s wife?”

“I’m here!” I call out.

Were you wondering where my husband was during my first moments in the café?

Where else?

In the bathroom. Minutes before we followed the waitress behind the curtain and stumbled into the darkness, Seth decides he has to pee.

I guess the line was really long because he hadn’t returned when it was our turn to be seated. I knew he would find me eventually.

I grab his hand, well. . .I try to grab his hand, but really just keep grabbing our waitress Faith’s hand.

“Nope. Your still holding onto Faith.” She tells me as she tries to guide me to Seth’s hand.

“See? Woman hand.” I touch her smooth hand. “Man hand” She laughs as I finally grasp hold of Seth.

“Ahhh. . .very important detail. Smooth soft girlie hands and rough man hands.” I say giggling about my complete ignorance.

I really need to concentrate and let me other senses take over. I am focusing on the blackness with my eyes. Opening them wide and trying to discern any tiny shape, form or different shade of darkness. There was nothing and I am disoriented.

After Seth is seated I turn back to my left and try to speak to the woman about her friends daughter again.

“So your friend’s daughter has autism?” I speak in the direction I had before.

There is no reply.

My voice seems small and gets lost amidst the other conversations. I have no other way to get her attention because I cannot make eye contact with her and don’t know where she is to touch her arm. I don’t even know her name.

All of a sudden I feel very alone and lost. I feel unseen and unnoticed.

Is this what it is like for Oli? She can’t see me and she can’t talk to me.

Does this sweet little girl feel unnoticed, unheard, lost and afraid in her world of darkness?

I slump in my chair as my heart begins to feel unbearably heavy. I sit back as those startling realizations hit me and think about that moment.

I think about how I am feeling at that exact point in time and try to burn it into my brain. I don’t want to forget it because I am learning. I am finally learning a very small part about what it is really like living in Oli’s world.

(Check back later. I have more to tell you!)

Isolation

27 Jan

“If isolation tempers the strong, it is the stumbling-block of the uncertain.” -Paul Cezanne

When Oliana was born we lived in a town called Pahrump, an hour outside of Las Vegas. We had moved there from Vegas only 5 months before her birth. I took my baby home to a house 1500 miles away from my mom, who lived in Iowa.

I had never really felt lonely before but, that day I began to realize how alone and completely isolated I was.

I just wanted my mom.

I have always been a very independent person but, right then, I just wanted her near me. I wanted her to hug me and tell me again that I was going to get through this. And that it really wasn’t as difficult as I imagined. Even though she had never raised a child with a disability, I wanted her advice on how to walk this difficult road that now lay before me. I had no idea even where to begin.

Going back to that house in Pahrump felt like being abandoned on a sinking ship.

There was no one around that I could use as a life raft when I began to feel like I was drowning.

There were no doctors or therapists for her in Pahrump. Oli’s nearest physician would be an hour away and I still didn’t know exactly what kind of medical complications she might suffer from.

I began to realize what a terrible mistake it had been to move to there.

I didn’t know back then, what living out there in isolation was going to do to me.

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