My New Normal

 

The question was simple, casual:

“Would you like to join us for a drink at the bar?”

I’d been to one of my regular jaunts into the Highland capital for a literary meeting, and the kindly folk were being, well, kindly.

The answer however, was not simple.  The answer was complex.  It was at that moment I realised how far from normal my life has become.

I didn’t give the complicated answer, of course not.  Who wants to know that I can’t drink alcohol, or caffeine, or in fact anything at all after 7pm; that I have to be in bed before 10pm to stand any chance of getting anywhere near enough rest; that the effort involved in getting a train into town and walking to the meeting saps my energy and renders me good for nothing for at least 24 hours, and often longer; that my poor long-suffering fiancé has to drive into town to pick me up – an hour each way – because it’s too much for me to get a train back home?

So I smiled.  Declined politely.  Wondered if they thought I was rude, or weird. Or both.  They didn’t need the in-depth explanation.  It’s neither warranted nor helpful. It doesn’t make either of us feel better.

But sometimes I’d like to explain. Sometimes I’d like to clarify – that my constant leaving of the room is to go to the loo.  I’m not sneaking out for a fag or a drink; I’m not being rude and I’m not bored.  My bladder disorder means that I am unable to retain urine in my bladder without being in extreme pain.

I’d also like to point out, that however offensive it might be, my sweating is not something I can help.  The pain causes the sweating.  It’s autonomic.  I don’t like it any more than you do.

I might also stress that my lack of sociability is down to exhaustion.  I can’t volunteer to do things because I would not be reliable.  I can never guarantee from one day to the next what my energy levels are like; when I’ll have a good day or a bad day. And my good day might be a very bad by your standards.

So, I will continue to smile and answer the question simply.  For your benefit.  For my benefit.  I will continue to live my nowhere- near- normal, normal-for-me life. And when I see people who look sad or troubled, or in pain; when I see people giving the simple answer – although you can see the complication in their eyes – I will not judge.  I will wonder what trials and tribulations they are going through.  I will signal my solidarity to fellow sufferers of invisible chronic illness, who look so very normal but whose lives are anything but.

 

 

Photo by Debbie Mathews.  Installation by Sophie Cave, Kelvingrove Museum Glasgow.

A Greater Fear

alzheimersI fear Alzheimer’s more than cancer, or more accurately, any form of dementia: a disease that can rob me of my abilities and ultimately my mind itself – my life too in the end.

Writing is part of who I am.  I can’t imagine forgetting how to do it; forming words and sentences, expressing ideas.  Such an easy, natural and taken for granted skill, stolen away by synapses failing to connect; brain cells dying.

It might never happen. My octogenarian parents show no signs of it.  My mum was tested because she thought her memory was failing.  The morphine she’s on is the more likely culprit. She passed the tests. So no signs, no obvious risk markers, but the fear lurks: in my forgetfulness, my inability to recall where I’ve put things; the impossibility of retrieving the right word at the right time.  I know it’s tiredness, and stress from being tired, that robs me of my capacity to remember, to recall, but the fear lingers.  Pain is so much easier to contemplate.  I can live with pain.  I do live with pain. Even dying is easier to think about.  Easier than contemplating losing yourself and everything that makes you who you are, without even knowing it.

I think about writing about dementia.  I’ve worked with clients who have it.  My sister works in the field.  I have friends who have family members with it.  There’s a wealth of experience and information that could be explored.

But for now, I think this is all I can manage.  For now I‘m writing furiously for all I’m worth, ticking projects off against the day when who knows what, who knows when.

 

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We all experience memory loss, and the inability to recall names and words from time to time and for various reasons. If you are worried that you or a relative may have Dementia, contact your GP who will refer you/them to a specialist.

The Alzheimer’s Society can be found here:

https://www.alzheimers.org.uk/

And Alzheimer Scotland here:

http://www.alzscot.org/