The past two days I have been pretty much out of it; the days before that a little less so. When I say out of it I mean that when I pick up my phone I have to think for a bit to remember how to work it; that hours of the day just go missing; that my head has a pain like a creature, that even Ridley Scott would be proud of, is trying to claw itself out. It is a scary thing to lose control of oneself; when the Epilepsy is presenting in rare and unusual ways. I usually keep this blog lighthearted, but in life just as in painting there are areas of lightness and darkness. Chiaroscuro is a painting term that comes to mind, but it could just as easily be a term used by psychologists – it refers to a painting technique where an area of lightness on the canvas is defined and accentuated by the darkness that surrounds it.
I often talk about the seizures, in truth I have even given lectures and talks about them, but I seldom talk about the other issues that can surround epilepsy; or really any chronic illness. I don’t talk about having a seizure and waking to find that I have wet myself, or that for a period of time I can’t even remember my son’s name. It always comes back – it always does, but there is also the fear in the back of one’s mind that perhaps one day it won’t. That in the way that my eyesight was stolen; perhaps one day I will awake from a seizure and find that the part which is me – the part that knows his family, and the part that loves to paint and write is gone. Maybe this is why I love zombie movies so much; a natural death holds no horror or fear over me anymore (I have written about this in my book so I won’t belabor the point by writing about it here), but the idea of walking around merely being the shell of who you were sounds like the true realization of a nightmare.
One thing that I have noticed is that while the physical manifestations of a chronic disease can differ from illness to illness, or even person-to-person; very often the way that we feel and deal with these experiences are very similar. Through my artwork I have talked with people who have been tortured almost to the point of death, people who have lost the use of their legs either from accident or illness, people who have fought cancer and won- as well as people still fighting, people have lost a loved ones, and so many more people, and so many more stories.
When I am down, as I am now, I think about these new friends and their stories. I also think about the people who I’ve connected with through my artwork, and while the future is always a mystery, thoughts about these special people make me feel better in the here and now, and to prepare for that future. I am writing this using a text-to-speech program because I am still post-ictal from the seizures, and my hands will not move quite as fast as I need them to.
I feel bad because I know I have let people down; while I lay in bed writing this there are other things that I should be doing – there are obligations and causes that I have agreed to and want to support, and yet I lie here confined to the bed with only my computer to reach out. Thoughts like this lead to despair. Yet, I know that there can be no true despair without hope. They are complementary to one another. It is the light of hope that shines the way to the depths of despair, it is the saccharine sweet promise – the golden reward at the end that leads you on. This works of course the other way around as well – to understand the pinnacle of hope is always on the other side of shadow. In moments like this, when days have passed where my body has not been my own, and my mind is just coming out of a fog I am comforted in the knowledge that I’m not alone. Thank you, to all of you, that give me something to hold onto when everything else seems to fall away. I promise I will write something funny soon.