I stopped yesterday and took a breath. A deep breath, allowing myself to think about my future. For yesterday felt like a turning point. My birthday. One I had not been looking forward to! Sixty years to look back at and contemplate and an unknown number to wander into or to plan. Stopping and thinking about myself is hard for me. Life has brought me much joy but unbearable pain too.
I live with complex health conditions. An unlucky mix of physical, psychological, and neurological. It makes me very dependent on my family. It makes me feel like a burden. Out of love they do so much, and I know I am very blessed. My husband and my three daughters give of themselves relentlessly.
I spent my professional life in various parts of the UK as a Clinical Psychologist, and it was a massive loss to me when that ended. For the last decade I have drifted, but last year I discovered art and writing, and life has changed. I am now in the early stages of a whole new path. Being creative was never something I considered myself to be. It started with going along to a craft class and a writing class. It was good to meet people as I had isolated so much but it was also good to find a way to express myself. It was hugely cathartic, allowing me to have time away from illness and disability. A real opportunity to be ‘normal’.
When I look further down my path ahead it’s hard not to see my independence shrink even further away from me. I look at myself and see my health conditions worsen. My hands are arthritic, and it seems a cruel quirk of nature that I have begun to paint only at this stage of my life. I am concerned about how long that will be possible for me. So, each day I enjoy it when I am able to. I currently have a piece of my art exhibited in an online gallery, part of the International Manchester Festival. I was thrilled to have been chosen. Late last year I also read some of my poetry at an Annual Celebration of Shetland Writers event. It has all been very exciting and I have discovered that I can be proud of some parts of myself again.
Illnesses that are invisible make life very difficult. People expect you to be free of pain when you are not, to understand what is being said to you when you don’t, to remember events when you feel lost and confused, to recognise people and know their names when you are unsure if you have ever met the person and much more. My brain just does not work like it used to. It's simply broken. It looks normal on an MRI or CT Scan, but my brain doesn’t function currently. If I were a computer, it would be said that my hardware was fine, but the software was no longer working normally. However, unlike a Computer where you might get it repaired or buy yourself a new one I am stuck with my brain!
I wake in the morning and I don’t know if I will be able to see properly or be able to walk. I might not remember the events of yesterday or know what day it is or what I am due to do that day. I hate it. Who would not? Functional Neurological Disorder devastates mine and many other people’s lives.
Being grateful for what we have is an easy thing to say and it is only in retrospect that we often learn to appreciate what we have in our life. I have always been grateful for many things in my life but have also taken much for granted. Art now offers me a way of being grateful. Painting what I see out there in the world and also what is in my mind. Writing about my thoughts and feelings and often linking them to paintings somehow allows me to have a voice.
My hope for the future is to have a voice. As a woman with severe disability it is so hard to have that. Like others I feel less important. Self-esteem takes a serious knocking when you stop working. I have had to learn to let go of some valued parts of my past. I have had to learn that some of my memories are lost forever and that making new ones is hard too. Now though, I can look at my writing and my paintings and have a record of who I am today. Day by day I will continue to enjoy what life gives me and try not to have regrets. Nobody knows the future.
Sharing my life, I hope you as a reader will reflect on what you are grateful for and to treat people with illness with compassion and grace. Being valued for who we are as a person and not what we are unable to do. People can be cruel to each other but often it is simply misunderstanding. I like the phrase ‘walk in my shoes’. Being able to understand that some people face severe unpredictability every moment of every day. Without having all our past memories, we cannot predict what is going to happen next. Simple questions like being asked our address or phone number can cause folks like me great anxiety. Watching a movie and forgetting characters from one scene to the next. Going for a walk knowing at any point your brain can forget how to and you have to sit and wait whilst somebody goes to collect your wheelchair. Being able to settle each night as even with night sedation you fear the nightmares that you always face.
These words above describe me now and will define my future. Having a religious faith, a loving family, artists, and writers who work with me and help steer me forward makes my life worthwhile.