time – he’s waiting in the wings

david bowie

i’m confused by time apparently speeding up and up. i’m wondering whether it will plateau at some stage, or will time continue to accelerate to the point that what used to feel like a year seems to go by in a week?

meanwhile, i’ve been trying to come up with an accurate analogy for the struggle of holding on to a sense of self, and self esteem, when dealing with multiple symptoms and restrictions, and endless compromises.

last week i was talking with friends who are in similarish circumstances. we were reflecting on the soul destroying process of applying, and reapplying, for the benefits we need. there have been times when filling in a claim for incapacity benefit, or esa, or dla, has left us despondent for weeks. being forced to focus on all the negative aspects of our lives can make it impossible to see everything else that makes us who we are.

lately i’ve had an image of two very different paths running alongside each other.

one path represents my essence; all the things i am passionate about, my friends and loved ones, the music i listen to, books i have read, thoughts i think, my memories; all the stuff that goes into summing up this mysterious experience of being a particular someone.

the other path represents the mess of all that is involved in being a long term sick and disabled person; the pain, days and weeks lost in bed, the wheelchair, the walking stick; everything i cannot do, all that i am not.

some days i come up for air.

on others i am drowning.

do we know who we are because we remember everything we have been, the stories of our lives? right now i am more confused about these matters than ever. i guess that is partly why i wanted to start this blog – to make a tiny mark to prove i am still here.

and i want to speak to all of you out there who might recognise something of your own struggle in mine.

recently i have realised that the ability to count our blessings is a blessing in itself. especially for those of us who don’t have the advantage of believing in anything. on my darkest, most drowning days, i am grateful for gratitude.