Names for Things

I wonder if it is important to name our illnesses. I write this just as I have decided to obliterate all mention of the term for the disability that causes one of my main characters such separation from all others. I removed the name for the condition. Just to be sure I have done a global find and individually replaced every word with another that is less specific.

My character is different from the others. But we can only guess at her diagnosis.

My sister has recently self-diagnosed with autism.  I was skeptical. I am not a fan of diagnosing yourself on the internet, but when I read the articles she had been reading about how women present quite differently from men I realised she might actually be right.  People confuse her. She avoids them if possible. She prefers to be around her beloved animals. She doesn't like being touched. She used to have fits of rage followed by quite frightening 'shut-downs' where she sat still and did not respond to anything for hours.  She is an incredibly talented artist with extreme technical ability. She is fiercely intelligent and yet can not handle personal interactions at all.

I am reading a big thick book on the history of autism called In a Different Key. It is pretty wonderful. Such a great read and says so much about human nature and western society and our relationship to difference. It is also helping me to confirm that my sister was probably right.

If my sister has a form of autism then my grandmother and my aunt definitely have it too. I remember as a kid my mother would be sad and hardly coping most of the time and the other three members of my family would be fighting all the time. My grandmother, my aunt and my sister all hated people. They distrusted everyone. They were obsessive about animals and only happy when around animals. They were isolationists. My mother was different but she was under the hard rule of my grandmother and found it difficult to assert herself. I spent my life trying to figure out how to make everyone get along. I was the peacemaker, trying to distract this angry bunch of misfits from whatever was bugging them. I made them laugh and gave them other things to think about. As a young adult I felt a bit ripped off by my role in the family. I felt like I was always looking after them and no one really looked after me.  With a diagnosis and a term to name it all by it makes it a little easier to understand and to forgive. Names are powerful that way. Names give us a way of understanding things easily. Names lead to forgiveness.

I have removed the name of my character's affliction. Does this mean I have removed an easy way of understanding and forgiving her behaviours?

I have lost the ability to recall nouns.  This is very disturbing to me. Sometimes I look at a thing and the name for it is clear and obvious. At other times I struggle and the word is just not there in memory. An eggplant loses its essential self as I stare at it and can no longer describe it in the simplest way. I can draw it in the air. I can describe it as shiny and black-blue. I can say you can eat it and I can even describe the way to cook it but I can't give it a name. The name has vanished. This is happening too often. I am also losing the names of authors and the titles of books. I am losing the names of acquaintances and even of friends. If I haven't connected with a dear friend in a few months I will go to say something about them and have no name for them. Even a break of a couple of weeks will obliterate a name. I am worried about this. My paternal grandmother died from early onset alzheimers and it is genetically communicated. I may actually have what she had despite the fact that I never knew her and therefore feel like she is something outside my familial circle. It is odd that the names have been lost first. I am losing other things too. I am losing specific memories and I am becoming confused that some memories I do have may be things I was once told rather than actual experiences I have had.

I have removed the name of my character's affliction because it medicalises her. It makes her knowable when she isn't really knowable. She is an individual and different from any other individual as characters are. I don't want people to say 'a person with autism would not do that'. When we write about a father, for instance, we do not say 'a father would not do that'. This is an individual. She calls herself S and everyone else knows her as Vivienne. She is mine. I created her. She does not stand for a group of people. She stands for a part of myself.

A part of myself is vanishing. It is the part that is confident and has very clear memories and remembers people and is very social. I long for the relative safety of isolation that my sister, my aunt, and my grandmother all made for themselves. I long to withdraw from the stresses of socialising. Retreat is in my genetic makeup and maybe I can quietly lose my memory without having to show the world what is happening. If I narrow my need for interaction then I narrow the possibility of demonstrating my failings.

Names are powerful and important. They are a quick way of understanding the world. When I say tree we all see a tree but you can't know the smell of the tree which stands at the front of our place. You can't know how the leaves form a mat in my pot plants, starving them out. You can't see the two owls who sometimes perch in the straggle of branches, and the Indian Minor's who swoop and harass them. You can't see the pair of underpants that flew off the balcony of someone's apartment and stuck fast in the branches, swaying there for months and now beginning to fray like a tibetan prayer flag.

I have accepted the name for my sister's condition and it makes me a little lazy. I understand what I should think about her now. I accept more easily. I forgive all the jagged edges that made our relationship difficult but I have also fixed her in a diagnoses that does not allow for the parts of her that were just sisterly competitiveness and bad parenting, grief from the death of two partners, and lack of love.

I am taking the name of the condition away from my character. I am losing the names for real people and objects. I have named what is wrong with most of my family. My relationship to names has changed on so many fronts. All within a handful of weeks. I wonder what that means, if anything.