Photo thanks to Dan Arkle

 

My Brain went wrong.

I noticed that I was in hospital.  It said Derriford Hospitals on the sheets and I was wired up to a drip.  I asked a nurse what was going on;  she didn’t answer.  She said not to play with my line, please.  Look, now:  I’d made it beep.

I didn’t feel ill in the slightest.  I didn’t know how I’d got there and thought that I must have been drugged.  I did what anyone else would do.  I took my cannula out and I left.  Security caught me at the hospital entrance.  The nurses complained that whenever I removed the cannula, it got harder to find a good vein.  I shouted at them.  They put me on the phone to my husband.

My husband said yes, I was supposed to be there;  my memory had gone wrong, that’s all.  And to be nice to the staff because they were as frustrated as I was.  We were in Bedford – we’d been visiting friends.  (It only said ‘Derriford’ on the sheets because there’d been an unhelpful mix-up with the laundry). 

I had, apparently, consented to treatment.  I asked for a pen and wrote this down.  Soon, there were scribbled notes everywhere, with helpful information like where my husband was and how to get to the toilet.  I could never find the right bit of paper;  I could never remember which bits of information I actually had a piece of paper for.   

They transferred me to my home city:  Sheffield has an excellent neuro department.  My favourite necklace came loose on the way and I wouldn’t let the ambulance-transfer guy look after it.  He was lovely, but I was feeling vulnerable;  I knew that I might forget, and that he might keep it.  I think I put it down in the service-station toilet and forgot to pick it up again.

I kept forgetting I wasn’t in London, until they moved me to a window with a fabulous view.  I felt like a fraud on a neuro ward;  there were people there who couldn’t lift their spoons to their mouths.  I still felt fine;  I just kept forgetting the way to the toilet.  I strode up and down, like a box-weaving horse. 

They sent me to the neurological rehab centre, which felt like a breath of fresh air for a while.  It was a brilliant place, but even that became a prison.  I wanted to do physical activity but couldn’t remember the rules to the gym.  Unless I read the whole thing in one go, I couldn’t follow a novel.  My husband searched for my favourite ‘comfort reads,’ so that I knew the story already.  The staff put up with a lot.  They’d send me home on leave at weekends and I’d take myself off for a run – and get lost.   

I’d been to Vet-school aged 18.  I had five A-levels and lots of work-experience:  Sundays at a children’s farm;  holidays milking cows and scrubbing tanks at a Sea-life centre.  A few riding lessons, days in an abattoir.  Lambing.  Hours of listening to Radio 4 in a filthy car with an equine vet.  I had to prove that I was ‘well-rounded,’ so I kept up with my three musical instruments (Grades 8, 7 and 5).  Despite being tone-deaf, I made it to County wind-band and played in an orchestra.  I was an active Guide leader and ranger, with my Gold Duke of Edinburgh’s Award and Queen’s Guide.  

I still felt like the thick one at vet-school.  The others talked a language full of technical -sounding words.  I wrapped myself up in the hiking group and visited fabulous places.  I scraped through five years of exams and made some good life-long friends.  

There was a traditionally harsh culture in veterinary.  Lots of clever people under a lot of stress, good at looking after animals but not at watching out for each other.  That was slowly changing and my second job was nice. 

Then I married a wanna-be mountain-guide, travelled for a while and started working as a locum.  That was good.  I could do my job, choose the best bosses, work for the unreasonable ones only on my own terms.  I could still have a life.  I was flexible, adaptable and I listened to people;  I was never out of work.

I diagnosed my own diabetes in job number two.  I kept needing another drink of water and of course, I had a glucometer.  I got my receptionist to stab my thumb with a needle and did a quick test.  My sugar was high.  I called the GP’s.

‘No appointments today.’   

‘That’s fine.  Could you tell them I’ve got a blood sugar in the high twenties and ask them if it can wait?’

I knew the answer.  They called me in and sent me to hospital.  They told me what to do and let me go home the same day.  

And now this:  ten years and two children later.  We were having a BBQ with a friend near Bedford;  there was cake coming up.  I was already podged, but I took some insulin ready.  No-one else wanted cake either;  they didn’t even cut it in the end.  I’d dosed for the carbs, but I forgot and went off to bed.  The amount of insulin for the cake I hadn’t eaten amounted to an insulin overdose.  Overnight, my blood sugar dropped enough to damage my brain.  It is known (because occasionally people attempt suicide using insulin) that the effects of an overdose are usually different to this.  For a while they were looking for something else;  I convinced myself that I had a tumour.  Yet I was improving:  one day, without realising, I walked straight to the loo on my own.   

My kids couldn’t wait to have me home, but hated it when I got there.  I kept forgetting what they’d said, what I’d promised, how old they were, or even to feed them at meal-times.  I’d agree to do something with them ‘later,’ but when ‘later’ came, I wouldn’t believe that I’d said it.  I’d try to put them to bed, assuming that bedtime was still six o’ clock.  Whenever I got something wrong, the kids and I all threw a paddy.  My husband gave up on his long-term ambition of being a mountain guide and got a job close to home. 

I’d proven myself as a locum vet and now I could barely be trusted alone.  Rehabilitation helped with the basics:  setting alarms to help pick the kids up;  labelling draws to make it quick to find cutlery, plates and clothes.

At first, my memory in general was useless, but it’s specifically my short-term memory that’s bad.  The ability to put things down in my brain to pick up a short while later, perhaps after thinking about something else.  What has recently been said;  what day and time it is;  where I’m supposed to be going; what’s happening next.  I can still learn things, but the learning is slow.  New thoughts and ideas are hard to ‘keep hold’ of.

In Roald Dahl’s James and the Giant Peach, lots of magical bugs fall into the soil and slip away before James can gather them up.  For a while, I pictured my thoughts like that.

I wrongly accused my kids of lying a lot.  One time, we bought the expensive new uniform fleeces from school.  On the way home, we stopped at the playground.  I put the package down on a seat and when it was time to leave, my kids (who’d been playing catch with it) tried to get me to bring it with us.  I refused;  I didn’t recognise it.  I told the kids that it must belong to somebody else.  We left the new fleeces there, on top of the bin, the kids crying their eyes out but I was still convinced I was right.  That was a low point:  I really hate waste.    

I kept letting people down;  invited folk for dinner and forgot.  I went to the local running club but two over-friendly women kept striking up conversation about my kids.  I helped at that school at the time and yet, out of context, didn’t recognise the Head and Deputy Head-teachers.

People asked what the kids wanted for Christmas.  I told everyone my son needed shorts.  He didn’t run short of shorts for quite a long time.  Just as well:  processing washing was suddenly really hard;  I didn’t recognise clothes and had to hold every item up and work out whose it was, and check the label to work out how to wash it.

I saw practise with one of my favourite clients.  I must have been an embarrassment.  I kept forgetting I wasn’t the vet in the room and kept forgetting the details of the case.  I could tell I was saying all the wrong things from watching people’s faces.  I stopped turning up and during the first Covid realised I’d left it too long to reasonably go back.  I’d bought chocolates to thank them and ate them myself;  they tasted disgusting.  

I even felt bad at listening to the kids read at school;  unreliable in my kids’ old playgroup.  I was actually relieved when social-distancing came in.  Everyone else’s worlds suddenly shrunk until I had a routine I could cope with.  Then the schools closed.  

Frustratingly, short-term memory is an important skill for homeschooling.  At first I’d forget which child’s turn it was, how they were supposed to approach the maths problem, or whether they’d done this already.  The kids were always saying things like,  ‘But you said that we could have chocolate.’  I’d learn how to use the computer-support aids one day, but then I’d forget it again. 

Appointments were missed;  promises broken;  small objects lost. I got locked out of my e-mail frequently.  I’ve lost my passwords, pin-numbers, cash and coats.  Forgot where we were going;  why we were there.  Conversations with me were repetitive and still can be when I’m tired.  I once got stuck in a massive department store;  couldn’t remember people’s directions for long enough to get out. 

I kept boldly thinking on several occasions, ‘this is so obvious and important that I don’t need to write it down.’  It turns out, that the importance makes no difference at all.  My brain also makes up crazy stories to fill any gaps.  For a while, I hadn’t a clue what was real.  My Dad died relatively suddenly and I went into chaos, disorganising visits, then the funeral, then the clearing of the house.  I still miss my Dad.  I wanted him to see me get better.   

Homeschooling isn’t quite so bad the second time around.  We still argue, but I’ve learned to listen to the kids – and I can no longer be depended upon to forget that bit of work that they don’t want to do.   However, it’s hard to assess your own memory.  Has my brain got bigger again, or is my world now so small I can manage it?  Perhaps it’s just that I’ve got a little more help and developed small ways to cope.   

I don’t know where I’m going at the moment, but I don’t want to be useless forever.  Between the home-schooling I decided to work on this blog.  To remind me that even awesome people have massive challenges and set-backs.  I’m not alone – in fact, I’m lucky – and, just as water changes its course, people who face their challenges will discover new ways to live.