When I succumbed to acute and severe M.E there were a lot of changes in my life, some of which were sudden and un-ignorable, and others which crept up on me slowly from behind. Some of them were caused by others, some were changes directed by me. Some were unavoidable, some were conscious choices. Some changes filled me with the grief of frustration and loss, and others swept me up like a breath of fresh, morning air.
The problem is, when you are in deep like I am, you can't just choose the nice changes or the ones that make you feel good. In fact, change happens all the time, to everyone, and you cannot resist the changes thrust upon you any more than you can choose to be well again. However, when change happens so suddenly and thoroughly, adapting and growing with it seems to be the only way forward.
The change which has been most difficult for me to adapt to has been losing my sense of identity. Indeed I've written about it on this blog before; the sense of 'Louise-ness' that I long to cling onto.
The biggest identity-busters have been...
1. I became 'Sick'
.......and felt unwell constantly. Hospital and the doctor's surgery are now my home-from-home. I could no longer do all of the things I used to do. I couldn't play in
my orchestra. I couldn't jump in my car and go anywhere. I couldn't
socialise with my friends except for in quiet, short bursts as it made
me too poorly. I couldn't go shopping, eat out, go and see a film, make
dinner, sit and watch telly, listen to music, walk. I couldn't dressed
in nice clothes as I had to be comfy. I lost my independence and had to ask for and accept help. DIY became ASETDI (Ask Someone Else To Do It).
2. I became 'Disabled'
I had to use a walking stick, which became elbow crutches and finally a wheelchair. I no longer walked beside my companions but sat in front of them. I felt like I had somehow become a lesser version of myself, a broken version. The faulty version. People were waiting for me to 'get back to normal'. I was waiting for me to get back to normal.
3. I became 'Unable to Work'
I was a Super-teacher. I loved my job. I am starting to cry as I write this. I have not accepted my inability to do to job I love quite as much as I might let on. I was good at it. I loved the pupils and parents, the school inspectors told me I was 'Excellent' (a loaded term in educational assessment!). But most of all I LOVED spending my days surrounded by children, and friends will tell you that since qualifying I had always described it as a privilege to do the job I do. Did. Past tense.
I identified myself as a professional. A full-time worker. I read research. I kept up with developments in education. I paid into a pension. I contributed to a mortgage. I wore smart clothes during the day! I talked about work with colleagues and teaching friends. I met friends for coffee on the way home, I was glad to put my feet up at the end of a long day and feel the satisfaction of a hard day's work.
What would I talk about? This was who I was.
Except it wasn't.
Life went on and along the way I gained some more Louise-ness.
I used money which my friends clubbed together and gave me for my 30th birthday to fund a starter course in Mindfulness, which turned out to be the best gift I could ever have been given. I learned how to be happy within myself, regardless of circumstances. I learned how to accept my body as it is now without wishing for it to be different. I learned to live my life in the present moment without wishing to be better or cured. I would never have found this path if I had not fallen ill.
In fact if I could chose being well and not having mindfulness or being sick and having it, I would chose to be sick. Crazy, eh?
I started to write, draw, paint, knit, crochet, garden, think outside the box, care more about people and focus on the good. I found out who my real friends were and concentrated my energies on them. I increased my circle of online friends and now send and receive beautiful letters and gifts. I rediscovered my creativity and had time to nurture it. I spent a lot of time with myself and gave myself a right-good-talking-to. I discovered my identity was made of more than my job, my health and my able-bodied-ness. I discovered that you could make up your own words as long as you put dashes inbetween. And I got pretty damn good at ASETDI.
I am still professional, even though I no longer have a
profession. I still read research, even if it is about the right plant types for clay soil instead of advances in teaching pedagogy. I still talk to my friends, even if it is no longer about
teaching but about life. I can still meet friends for
coffee, even if it is only when I'm well enough and if they take me and
bring me home. I still wear smart clothes during the day..... ok... I'm
lying.... I dress almost exclusively in PJs or clothes that look as much
like PJs without being actual PJs that I can possibly get away with!
But you get the point.....
Identity is a lot of things. But mostly it is me. And I am more me than I have ever been before. And do you know what? It's not actually that bad.