The hardest part of watching my Nanna fall deeper and deeper into a Parkinson’s Dementia is not the hallucinations she has or the alternative reality she has stepped into, it is the upset these hallucinations cause her. Two girls sitting in the corner who she worries and fusses over, are they eating enough? Are they cold? They just sit giggling and whispering to each other, ignoring her efforts to make conversation. She says she cannot cope any more, she cannot live this way. Because she fears what she is seeing is not real and it scares her? No, because the girls won’t talk back to her in her own house, she cannot live in a house where people ignore her. Who are we to say that this is not reality? It is her reality, she sees and feels it as real as I see these words typing out on my computer screen, definite and solid. In many ways I can understand her new reality, having Asperger’s I feel like my own reality is some what different to others. Not so far apart that the vision is different, but perhaps slightly to the left a bit, a different angle in space and time. They see things quicker and clearer than I do, but my angle is more detailed; slower but finer. There have been times when I have felt so out of sync that I am slipping off the edge. How easy it is to lose yourself and the external world you stand in when you cannot feel what connects you to it. So busy absorbed in trying to understand others or in an activity that you forget where you left your body or what it felt like. It is often why people on the spectrum fear loud noises and strong sensory experiences, it distracts from their concentration of where they are trying so hard to exist.
When I cannot understand what I am thinking of feeling I detach externally, which is when the trouble starts. People with autism commonly hear voices that are not there and see people no one else can see. It is not Schizophrenia, it is why people with Depression often have similar experiences, when you cannot feel the world and its connections an imaginary voice is as a real as the person’s sitting next you.
I cannot describe the desolate loneliness these experiences bring. I often describe it as being held up by strings, and then having each of those cut. Losing gravity. Like you are walking across a bridge above a deep pit and suddenly the railings disappear. There are no edges or sides to anything. The world is a big open space to navigate without any supports hold you up . Nothing is attached. You are completely detached from all around you.
In The Compassionate Mind, Gilbert describes how we are the only living creatures to realise we are completely alone. Most animals are drawn together in common goals and communities. We are the only ones with a conscious to realise our own loneliness; in a healthy mind those thoughts will hardly disrupt your day. Surrounded by the connectedness of others all those happy chemicals like Oxytocin, which make living worthwhile. This is why many describe depressive thinking as being more realistic. It is not surprising why those who are depressed and/or have autism so easily lose the connectedness that makes our innate loneliness such a small consequence of being human. Loneliness is painful, it goes beyond depression, it is a pathological boredom that bores into your brain with such an intensity you can lose sight of reality, of future or hope. Yet it is also essential, it is what drives us to form bonds and communities, whilst allowing us the independence to make up our own minds and better ourselves.
Our reality is that our minds are too fragile to accept only one reality. We should never get lost in our own or believe everything we think. Asperger’s has certainly opened my eyes to perceiving others. In a moment of lucidity as my Nanna sat on the floor after a fall, she had gotten up to help her father, who she was seeing, from falling off his chair, she told me she knew we could not see what she saw, that we did not believe her. She said the Parkinson’s made her see things. She didn’t mean as a symptom, she meant that it had opened her mind to see things we could not see. She had been allowed to access this alternative world, that we could not experience.