Living Differently - Terror in the Body

8241699797_777fb7e767_c This is a photograph I took a few months ago of my bed. The title, 'Home', will hopefully mean something to the thousands like me who live with chronic illness and spend a lot of time housebound. The idea for this blog has been floating around my head for some time but I was reluctant to put finger to keyboard and write it. So much of my conversations these days seem to begin with the phrase 'since becoming ill...' and if I was bored by this opening gambit I could pretty much be assured that others would be too.

I have a variety of diagnoses - Lyme Disease, Chronic Fatigue/M.E and Ehlers-Danlos Syndrome. On top of that I have lived with depression in varying degrees most of my adult life. Looking at this comely list I immediately sink in to shame. Although I know it's not my fault that this has happened to me I cannot help feeling I have been invaded by positive thinking body snatchers and should just pull myself together. Needless to say I would never judge others this harshly but there it is, the protestant work ethic leaking in to my daily thoughts and the idea that if I just tried harder I could magic myself well.

Thankfully I have learnt a number of techniques to counteract this tsunami of self-blame, one of the most helpful being a beginner's mindfulness. Even if it is for moments only I investigate my feelings thoroughly, where (if anywhere) they are located in my body and try to find words to describe the sensations. At that moment I become both the observer and the observed and it can give me a fleeting sense of freedom. But what really works is having a continuing creative process and, as I have written elsewhere on this blog, photography has been a bigger help than I could have ever imagined when I very first picked up a camera as a teenager.

2012 was a tough year. It is hard to describe the grieving process of becoming ill with no (immediate) hope of getting better. Everything changes. My life before my current state was not an endless fairground ride of jollity and excitement but I was unaware of how much freewill I possessed. Now my stamina and energy are so low I have become the flakey friend I often used to feel intolerant of. Every arrangement, from making my bed, having a friend over for half an hour, on bad days even cooking myself a meal - can be cancelled at the last minute. I live this new life in pencil, not pen.

Once I could earn my own living and as much as I would like to say this did not impact on my self-worth having to depend on benefits can make me feel infantilised. In short my independence, of both thought and action, was something that were so tightly wound to my identity that losing these to the degree I have feels like a living bereavement.

I am homesick for what I now feel is my 'old life'. Even though I know I am romanticising a past which almost certainly did not exist the way I paint it. I came to realise that my experience of depression was a help to me. I had already encountered such feelings of despair, ones I thought I would never flee but somehow miraculously did. I knew this landscape well, how utterly convincing it was that there would be no sunlight again after the dark night fell. Also, and I cannot emphasise this enough, therapy helped. Therapy really helped.

I had a hunch there was a through-line in my life experience. That's where I got the title of this blog. I have always been scared, on some level. Sometimes I have managed to muffle that fear with frantic activity, over-eating, sex, or any number of fleeting distractions and encounters. Now I live with an illness with an unsure prognosis, in a country where benefits for the sick are being eroded and, for good measure, having to move out of my beloved home of 20 years plus, fear is not something I can bury any longer. The foundations really are crumbling.

But this is not new. I never felt at home in myself, or to the degree I wished for, in the world out there. I have always been afraid of something, of a future where the sky falls, of people I love and depend upon dying, of not being able to survive. And although there are many days I hate my illness with an acidic intensity I realise I also have a begrudging gratitude for what it has offered me. I no longer have to wear a mask. It has been torn from me and I can now face the terror. There is no where left to hide. And this, at long last, is where I begin my journey.