Wednesday, March 03, 2010

her name was alice

down the rabbit hole

And she has been gone for seven years, although I have only known for about six. That doesn't change things. Nor does the fact that I am not entirely sure exactly when she died.

When the death of my sister was first reported to me over the phone by my Aunt, she believed it to be the 13th of March. I was in LA, literally waiting for people to arrive for lunch as I heard the news, and the year ago part. But then when I was being a bit morbid recently and discovered this website that has listings of people's birth dates, death dates, and social security numbers, I looked up my sister (grandparents, great-grandmother, aunt, and mother). There it said my sister died on the 3rd of March. But it also said my mother was two years younger than she was, so this could be a typo too. I got the impression this site's main focus was geneology. It could generate a letter you could send (along with a fee of about $40), to receive a copy of the original paperwork filed to obtain a social security card for the deceased.

As I said though, it really doesn't matter if it was the 3rd or the 13th or some other day in March in 2003. The fact remains she died, and is gone. I will never see her again. Never talk to her again. Never touch her again. It is still hard to believe.

My sister and I had a turbulent relationship, at best. We never had a true relationship as adults. The last time I saw her, she was 16. We would have some contact when our grandmother died a couple of years later, but nothing again until we were in our late 20's. Then she contacted me on the Internet pretending to be a 17-year old adopted girl from Maine.

I suspected right away it was her. B told me I was paranoid. Thankfully he was sitting next to me when several weeks later she would reveal her true identity on AOL Instant Message on President's Day. The words came across the box, "what if I said I was your sister?"

I moved away from my laptop, slightly terrified to touch the keys. I sat and watched as words scrolled down the screen. They revealed things only the two of us would know. The secrets of sisters.

She really wanted me to call her, and was upset that I wouldn't. In all honesty though she wasn't looking to have a relationship with me, but rather our mother. She thought that she could go through me to get to her. She had no idea what was going on. She couldn't believe that our mother was about to hit bottom, and there wasn't anything either of us could do to stop it. Of course she blamed me for not doing more.

When she got my Mom's contact information she pretty much dropped me like a hot potato. It really was okay. I could tell she hadn't changed. She was still blaming everyone else for her problems. She was living with a man almost as old as our father, and did see how it was a way of rebelling against our mother. I got to talk with him for a little bit over IM. He was an interesting character. He became known as 'bagel boy'.

The last I had heard about my sister when she was alive was a call I got from that same Aunt. I was literally days from moving from Austin, Texas back to the bay area, having no clue how things were going to work out. Surrounded by boxes, I listened as my Aunt explained my sister has Gillian Barr. Apparently my sister had been in contact with my Aunt for a little while. She wanted an Alice in Wonderland doll. My Aunt sent it, but then got suspicious when she asked for another. My sister told my Aunt not to tell me she was sick and living in a nursing home, but then changed her mind when she learned that it was hereditary.

So there I was listening to this, looking around at my life literally packed up around me, thinking that I might get really sick, and probably soon. My Aunt wasn't sure what else to say. Honestly, neither was I. I mean do I thank her for this information?

Of course as soon as I got off the phone I went and consulted Dr. Google. I found a few message boards, and read well into the morning hours. Nothing that I could find said anything about Gillian Barr being hereditary. They didn't know much about this disease, but it was pretty clear that you didn't get it in your genes.

What does happen with this disease is that it paralyzes your body. I realized my sister's psychology had become her physiology. She was paralyzed from moving forward with her life, and was now literally unable to move her body. It was sink or swim time. It was all in her hands.

From what I read, many people recovered from Gillian Barr. Some had a complete recovery, while others had mobility issues of varying degrees which lasted for months to years. I couldn't bring myself to call her. I mean, what do you say to someone who is so manipulative? Also, I was about to take a giant leap of faith, and really couldn't handle any more. Of course I had no idea that within six months she would be gone. Forever.

Please don't misunderstand. I loved my sister. I just couldn't deal with the lies and craziness. She was always changing her story. She would tell me things like she never had epilepsy and that our mother didn't take care of her medical needs. This was insane. I was there on multiple times when my sister had her seizures. And also have memories of my mother trying to figure out what was wrong. There were all kinds of books on our shelves, not to mention many appointments with specialists. Our Mom didn't want to believe my sister had epilepsy. But when the doctor sent her for the EEG, there was no refuting it.

Still it is hard. It isn't helping that Alice mania is upon us with the release of the new Tim Burton film. It is hard not to think of her. I don't regret not having that final conversation. I am sure it would have ended with her hanging up on me after she told me to go F myself.

I always left the door open. I always had hope that she would turn her life around. I believed she was capable of taking responsibility for what happened, and could move forward. I never gave up hope, but now it is gone.

on the night stand :: Alice I Have Been by Melanie Benjamin

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Blogger Alison Chains said...

I'm sorry for your loss.

9:57 AM, March 06, 2010  
Blogger ChemoBabe said...

chris, i had no idea. please accept my belated condolences. loss is so complex when your feelings for the person are this complicated. it is clear that you loved your sister nonetheless.

6:43 PM, April 11, 2010  

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