Gone But Not Forgotten

Got a call from my sister today. I'll call her Betsy. Why Betsy? Well, it's a rather old-fashioned name in my mind. And my sister is stuck in some old fashioned world that is far away from mine. She is schizophrenic. The gene is strong in our family. My mom,  my sister, my cousin, probably an uncle.

Betsy was at a pay phone. She told me she was waiting for a bus to the university a few towns over. She said she was going to look up cartoons and copy them so she could give them to people and make them feel better. She then told me how to find cartoons in the library and insisted that I copy and give out cartoons too. I laughed a little, hemmed and hawed.

"Come on! Why don't you do it? You should do it. It will make people feel good. Promise me you will do it."

"Well,  I kind of doubt I will."

"I know! Why not? Tell me why not?!"

"Well . . . it's really not my thing."

"Ok. I can accept that."

Talking with someone who is mentally ill elicits the same reaction in my body every time it happens. I tense my neck. I hold my breath. I feel like I am walking on a tightrope, balancing, balancing, and hoping the next gust of wind doesn't knock me over.  I think walking on a tightrope is probably even easier in some ways, because if you know what you are doing, you can make it from one end to the other using all the skills you have practiced repeatedly.

Repeated interaction with someone who is mentally ill does not build a skillset that can be applied each time. In other words, mental illness is all about unpredictability. When you never know what is going to happen, when you know there is a good chance of something going wrong, but you can't predict the trigger,  timing, or the outcome, all you can do is try to tiptoe through the conversation, alert, hyper-vigilent, hoping to avoid whatever hidden landmines are waiting to explode.

That was pretty much my childhood from 9 on, and it has continued as an adult, with less frequency of course, because I have my own life now.

My conversation with Betsy was not long. Once we got past the cartoons, there was the weather, and "how's church?" questions.  She sounded strong which surprised me, because the last report I heard coming from her landlord and the people in her parish was rather alarming. It's extremely, unseasonably hot back where she lives, and Betsy has been walking out in the sun wearing sweaters. I asked her if she uses her air conditioner. No, she said. She hasn't really needed it. She doesn't like it.

People have reported her as being red faced and hunched over as she walks through town.  She has been yelling at people. She is thin, and I know she does not eat well. "She needs to see a doctor", her very kind and loving landlord tells my other sister,  Ellie. (I have given her this alias because she is a female version of a cross between TS Elioit and CS Lewis. If you combine their names you get Eloise--sort of. Ellie is short and easy.)

Well, of course. Yes, yes, yes. a doctor. How many times have I asked, explained, suggested, demanded that she see a doctor? I don't know. I know that the helplessness of family in these situations is unfathomable to those who haven't lived it. I have tried. I have had her hospitalized against her will. I have tried reasoning, helping, not helping, playing hardball, tiptoeing, being blunt, being mad, being sad, being loving and kind. I have been through every emotion, every strategy. I have called agencies, therapists, crisis workers, lawyers.

I cannot save my sister.

One person who knows the laws about guardianship told me that we will have no power to help, or force medication, or do anything on behalf of Betsy unless she is completely incapacitated, or in other words, no power to do anything unless something terrible happens.

The sister I knew is long gone. She was my best friend. She was my advocate, my personal cheerleader, the audience for my tales of teenage angst, the friend that stayed up nights late with me to giggle over nothing.  She is gone.

The person occupying her body is not someone I know. Betsy does not wander about babbling and hallucinating in the way schizophrenic people are typically portrayed in film and tv, although I have seen her reacting to things that aren't there. She does however, engage people in a childlike way, making them uncomfortable.

Betsy can go on for a long time about herself, her view of life. Could she convince a policeman sent to determine if she is a danger to herself or others that she is perfectly fine? Yes, she could. Is she fine? No. Not in the least. Because, after what may appear to be a lucid conversation, Betsy might forget that the conversation even happened, or she might get on a bus and travel a 1000 miles with no money and no plan. She might knock on your door at 2 am, or send you strange postcards with writing that barely makes sense.

Sometimes when I go about my day, I stop and remember that she is living her life in a small apartment without much furniture, and few belongings, because she has taken a vow of poverty. She is lonely, feels useless and isolated, and, like a child, is unaware of the way the world works. If I allow myself to consider her world for very long, I can't feel mine. Anxiety, numbness, the shallow breathing that happens when I am in her presence, they take over when I let Betsy into my day.

But I can't let the grief consume me. I cannot let my empathy swallow my capacity to feel joy. If I do, I will drown. And so as my mind considers her day, and what it's like, I step away and focus on the flower in the neighbor's yard, or the dog  barking for a walk. I say a little prayer. I allow myself to forget, until I remember. And perhaps on Sunday I will cut out a cartoon or two from the newspaper and send them to my sister.

The Little Intellect That Could

This morning I attended a fundraising breakfast for a non-profit public health organization that works against those who would bring nuclear waste into our state. They also are trying to stop the ridiculous plan to build a nuclear power plant here. It would be the first.

Noted author Jonathan Schell spoke. I got a free copy of his book "The Seventh Decade: The New Shape of Nuclear Danger" because I volunteered to help with set up and registration. I was told not to read it at night. It's too scary.

I've gotten a big boost from being in the same space with people who will take time to consider these issues, who enjoy listening to someone compare our relationship with nuclear power to that of Gulliver and the Lilliputians. Yes, we are the puny Lilliputians with our flimsy web of imagined security, woven with weak threads by small hands.

It has been my nature to underestimate my ability to thrive in environments where people are really, really smart. I tend to feel inadequate. I have never, EVER, considered myself to be smart. I guess that's because I was always the least intellectual in my family. I wasn't valedictorian. I dropped out of Latin class after two years. My siblings hung in for all four and can still recite Cicero 30 years later.

I was the social one who left my tests unstudied for my senior year. My memory was good, but my use of it centered more on memorizing lines for school plays. Although I did fine in school, I was not in the "smart crowd."

My siblings went to the University of Illinois, and I can remember listening wide-eyed at their stories of all night paperwriting, and professors who gave difficult assignments with the intention of scaring students out of the class. I knew I couldn't go there. It seemed to be a world that was over my head, and so I stayed in safe places where I thought my intelligence would not be severely tested. I came to believe that's where I belonged. Not that the place I attended college was inadequate by any means. I just didn't see it as the intellectual equal of my siblings' school. And I could take classes that would not put me in the cross hairs of professors eager to discover how inadequate I felt myself to be.

I mean after all, I watch Survivor and and no matter how blatantly someone may manipulate my emotions in a book or movie, I still break down and cry. I don't turn up my nose at all the junk in the media, and my idea of fun is an evening of cut- throat Mexican Train (Dominoes). I doubt Thomas Friedman or Noam Chomsky would ever say that! In fact, as I wrote that reference I had to look up Noam Chomsky to see who he really is!!!

So you can see my self-image has never included the idea of strong intellect.

But that is changing. My older sister has been telling me lately that I actually am very smart, that I have to the capability to write well, that the reason I often feel alone is not because I'm defective. Somewhere, in some small place inside me, I'm starting to believe it. Maybe I DO think well on my feet, maybe I CAN hold my own in an intelligent discussion, maybe my perspective IS worth stating in spite of the fact that one of my favorite things to do is watch cooking competitions on TV, or do really easy crossword puzzles.

Today felt good, and tomorrow I want to find more of it--this space where people meet and think and discuss things beyond the ordinary every day. I think I can.