Groundhog day: excluded for being ‘too ill.’ Again

So on Monday  they catch me. I’m ringing up Ms Fitty’s college with my work hat on but they grab me and tell me to swop headgear sharpish. They need to see me as soon as possible.

There’s a special tone that educationalists put in their voice when they’re fixing up a meeting to divest themselves of my Ms Fitty. I’ve heard it several times before..

We’ve already seen off  ‘She’s depressed‘ – which was last month’s  salvo aimed at her continuing education.  Ms Fitty’s not depressed. She’s pretty unhappy to be 21 and still have the college ringing up mum, and to be getting iller, and to be taking medication which isn’t working as it should, and having seizures on the bus and in the bath, and still toiling over level 2 qualifications  while her friends and siblings are scattered round the world finding themselves.

“Unhappy,” as we told the college “is not the same as depressed. Unhappy is only being aware your life is not as it should be” And, far from being unhappy,  she loves being at college.  Loved.

“We really need to see you on Tuesday.”

“Its going to be difficult,” I whine.  13 years of solitary round-the-clock wakefulness and worry, of filling forms, and lifting and reviving small bodies, and bluelighting to A&E, of chasing prescriptions while earning a living by  meeting deadlines at hospital bedsides has not done a lot for my health. In the last 2 years I’ve had two chronic and incurable diseases diagnosed and I’m spending all Tuesday morning in hospital having multiple x-rays. That’s for the Crohns. To add to my difficulties the other diagnosed condition is epilepsy,  which means I can only get to the college by bicycle. Seven miles of country roads, in the dark, with a belly full of barium.  Who’d be a carer, eh?

Of course,  I do arrive,  and when I do arrive, it is to a meeting with the most senior members of the administration. Who tell us that  they can’t continue educating my Ms F. Frankly, on this occasion, I can’t really deny the problem.  Nothing remains in her head. Information oozes out like overripe Camembert. Poor poor Ms Fitty. Her sister has a law degree, her little brother is  at school in Shandong province – and she is having to leave her college because  she can’t remember how to log on to a computer. Yet Ms Fitty is a sentient intelligent 21 year old  and – although the uncontrolled nature of her epilepsy means she may need an advocate on occasion- this doesn’t mean she is not quite as clear about her current situation as anyone else.

They should be talking to her, not to me.

But they won’t. They utter consoling sweet nothings and tell her they wish the other students worked as hard as she does. And they offer deliberately unspecific hopes for the future. Reading between the big black lines it looks as if they don’t expect to be seeing her back again.

I’m not going to argue. I see their point. And when it comes to making people teach her when they don’t want to.. well my experience is,  that legislation or no legislation,  it just doesn’t happen.

So we will have to go and get her pills sorted out at the London specialist hospital. Again. And try again. Again.  Over the years I think she’s taken 18 or 19 different varieties of anti-epileptic, singly and in combinations. She has attended five separate institutions in the past 5 years. And we may now be at the end of the line for both.  O I can’t tell you how desperately I will fight for this not to be the case.

Miss Fitty is like a zombie much of the time and she hates being a zombie. And its pretty hard caring for a zombie too. We’ve seen her through five unproductive drugs changes this year in vain. But if they could manage to get it right.. If only..

Its not the despair that kills me, its the hope.

The tragedy of the family carer


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