Today is my graduation. Today is the day I am to be presented with my MA. For the first time in my life, I have chance to wear a cap and gown ..never had a degree.
But I won't be there. The award will be presented without me today. Today i will be at home, as I am every day, caring for my wife who has severe ME. That means that every indescribable moment is a burning throbbing agony, that every morning is another awakening into a nightmare. It means that GP's give up on you. It means fighting the Government every step of the way for your benefits. It means aloneness, isolation. Left to get on with it. It means that's it's her and me today, getting through as best we can.
In the words of the old song, it means that Greg Crowhurst regrets but he is unable to graduate today. So okay that's fine. that's the way it is.
Yes I could have gone. My wife had even arranged for a friend to come over for the day. But my wife is particularly ill, in very bad pain right now. I can't leave her.
And then, well, on £38.70 a week - the pitiful sum that full time carers receive for 24 hour care, 7 days a week - it makes it difficult to budget for things like graduation ceremonies. The photos alone would cost that I reckon. No, on £38.70 , you get on with living a simple life.
A good life in fact. My wife and I walk a high pain, a spiritual path with so many insights, so much learning. We are in love. You know, I value this opportunity to grow and be.
I love my life ...and yet, I have needs. there is a need for support, for space. there, I've said it. So hard to be a carer and admit that.
I admitted my needs just the once, at a carer's conference I attended. To my horror I was literally chased out the door by a social worker, so eager was she to speak to me. That has done a lot of damage. To me i was on the verge of being "clientised" and processed by social services. Ugh !! It turned me off. I haven't been back. In fact I've little time for the carer's movement. There is such an air of suffering, of being hard done by, of difference to professionals.
Of being a victim.
I don't want that. I chose not to go to my graduation ceremony today. I am proud of what I do. I am proud of my relationship. I will defer to no professional - but I will shake the hand of any who offers to work in partnership with me, with us. No one has.
If my needs are not met, I will crack-up. I know this, I am aware of that. But how will those needs be met ? through the local carer's movement - get away !! Through social services - no- I will not be a "client" !
If I was to turn to a group for help, it would need to be a self-empowered, dynamic group of individuals : who have probably thrown the word "carer" away !!
That's who i would look to. That's where I am.
I keep going. I will find a way to express and meet my needs. I guess a graduation ceremony is just a way of acknowledging that stubborn determination to keep pushing forward, to keep expanding and growing.
Well, I don't need a graduation ceremony to tell me that.