I have a friend who has never, ever treated me any differently since I became disabled. I have a handful of friends from my 'well' life who have achieved this. And it is their achievement, not mine.
She has never talked to me in 'that' way, pandered to my self-pitying moments, been at a loss, tactless or inconsiderate.
She visited me in hospital when I was hooked up to a feeding tube and nearly dead. Others were too scared to come near, I suppose because I looked so close to death it almost seemed like a foregone conclusion. That was a while ago now. I think me and death danced a little, but I trod on his toes.
Today she had tea with us in the park and handled the imminent separation between my partner and I with diplomacy, humour and a 'can-do' attitude.
She has known 'us' as a couple for years. But I feel she will still want to know us when we are no longer a couple. She will be there for both of us in separation.
She makes me feel as though I am still me. Because I am. And when things get a bit ugly it's friends like these who help you stay grounded, rooted in who you are.
All the psychiatrists, neuropsychiatrists, therapists (bar one), occupational therapists (bar one) and community psychiatric nurses mean nothing compared to time spent with a true friend.
Yes, there are occasions when you have to deal with doctors and therapists, and engage with ideas, strategies and treatments which may lead to improvement.
But increasingly, as I disentangle myself from the system, I realise that although I went into a deep crisis following becoming ill, I turned to the wrong people for help. I thought because I was suddenly and catastrophically ill that I would be helped. I became, in seeking help wildly and indiscriminately, helpless and enfeebled. The more I sought help, the more I lost myself. And it made me so much more ill.
Eventually it began to feel like struggling inside a plastic bag - I could see the outside world, but couldn't quite get there, and all that struggling just exhausted me beyond exhaustion. Recently, the bag opened.
There's a children's story called 'Don't Do That' by Tony Ross where Nellie gets her finger stuck up her nose whilst excavating it. During the course of the story, many and varied professionals (a doctor, a scientist, and a fireman to name but a few) are called to address the problem. In the end, her little brother, Henry who has been saying all along that he has the answer (but no one will listen) tickles Sophie, and hey presto, problem solved.
If only I had just gone and got my finger stuck up my nose.
As for the plastic bag, it's still around my feet and I stumble a little, but I'm climbing out.
Now I need to let my friends know that I'm returning, somewhat altered but still intact. I have been advised to seek out those friends like the one above, who show understanding and still recognise 'me' in all this. Friends who make you laugh despite it all, who you can cry on if needs be, and who help you focus on the way forward. And I have to say that this space, finding people who understand without the many and complex hurdles to understanding that we see other people in our lives try to negotiate, is proving very healing.