We got lost this year. All of us. The Rose turned 18 and the whole family went through a huge (unrelated) crisis just afterwards. No one died. No one was ill and we are all very much together, so by global standards of problems it was nothing at all – except to us.
The crisis was so deep that I found myself operating in a strange and fear filled world in which I had no control at all. I didn’t know how to navigate the waters, no prior experience to call on and my usual powers of communication were all but negated. Things went on which I could neither fathom nor prevent. I was lost in ineptitude, ignorance and fear.
For many weeks I was almost literally speechless. I lost the power to talk with any effect. I lost grasp of simple words. What I did say appeared to come out in a foreign language in so much as when I talked to people they didn’t seem to understand what I was saying. I failed to understand anything communicated to me too. I lost my memory. I sought solace in repetitive, numbing behaviour and I was constantly sick, restless and exhausted.
I was so frightened. I’d been cut adrift in my world with no idea if I’d ever get back. I couldn’t visualise ever living without fear or indeed feeling normal again.
But what saved me was friends and family. The family just existed. No fuss or questioning or expectation or badgering – just acceptance. The Dad of course provided most of this because we needed The Rose and The Brother to be as shielded as possible. But the normality they provided from my private hell was both conscious and unconscious. I never fully explained to The Dad. I couldn’t and he didn’t ask. I thank him, them and whichever God is in charge for that. The gap between what I knew and what they didn’t made me an island and there was some strength in that, only having to think about my own weather system, not the storms.
Friends – without fuss or ceremony simply let me know they could help both emotionally and practically. I was careful not to tell anyone. Not only could I not voice it but I also needed to keep up my ‘face’ in order to keep what was going on inside together. The thought of letting out what was going on inside was a horror show too far. I didn’t want to see it. I didn’t want its full awfulness walking around in front of my eyes. If it was buried inside there was the merest hope that it wasn’t actually real. But those who were closest knew and again without demand or ceremony just ‘were’.
So what about this blog then, isn’t it supposed to be about The Rose?
Well that’s just it. It is. My ‘symptoms’ were what she feels every day with no hope of escape or recourse to past normality. My oasis of calm, my anchors and hope – my friends – are something she just doesn’t have. But she does have us. Her family.
What I have learned is that despite our love of The Rose I live with my disappointment of her Aspergers on my sleeve. I tolerate rather than embrace her difference. I am less than patient with her anger and everyday stresses and despite my proponent that we ‘get it’ – I inwardly compare, hector and crave her to be ‘normal’. I always think ‘what if’. I am never satisfied with her differences.
So if I my support network had badgered me to ‘cheer up’ or wished they’d had a less needy mate – I’d have been lost. If my family hadn’t provided me with silence and calm and routine I would have broken down totally.
So that’s what I have to do for The Rose. And I am trying to do it.
And although the outcome to our family crisis now appears brighter (thank goodness) it’s by no means over. But one day it will be.
Wish The Rose could feel the same.