Encephalitis – Hannah Joels – My Brain My Story 2019

Before I start I’ve actually written
down what I want to talk about, but before I start I just wanted to kind of give you
some context. Because once upon a time I did public
speaking. Once upon a time I could stand up and talk for half an hour about
something without having to read it. But unfortunately today my memory doesn’t do
that anymore so I’ve written this down, and hopefully I’ll be able to look at
you whilst I’m doing it. But just to give you a little bit of context. So it’s
strange to be here today talking. Strange because it’s almost 2 years to the day
that I became poorly with encephalitis. I’m a teacher and it was half term,
and as a family we’d planned to go and see a children’s ballet with our daughter
India in Leeds, and we decided to stay in Harrogate. I was exhausted as the
September/October half-term always makes me feel, and so when we travelled up
to Harrogate I was tired and I felt like I was coming down with the flu. As the
day went on I felt more exhausted and fluey to the point that we arranged an
emergency appointment with the GP in Harrogate, and she was pretty
convinced it was nothing more than the flu – but that I needed lots of rest. So
instead of staying we decided to drive home so that I could sleep in my own bed
and not worry about the ballet in the morning. The following morning my husband
Paul took me to my own GP whose words were “I think you’re the first real case
of flu this year.” So I went home with paracetamol and an order of rest.
The following 24 hours I barely remember. I vaguely recall going
to a car garage just outside of Nottingham, but it’s all jumbled up in my
head and then the next 24 hours becomes a blur. Apparently I was making little
sense, talking gobbledygook and not being at all logical with my speech. I vaguely
remember being, trying to explain things that I’d said and they had no relevance
to what I was thinking. I do remember the GP telling Paul
that there wasn’t anything that they could do, and he had to take me to
hospital but beyond that point I don’t remember a lot. A very busy A&E, lots of
beds closing my eyes a lot as my head hurt as much as it did when I’d had
meningitis the year before. The doctors wondered if it was meningitis but that
would have been sheer bad luck given that I’d already had it once. But they
apparently did all of that they but they apparently did all the
tests ECGs, lumbar punctures, etc to see what was going on. And apart from
fragments of that I don’t really recall much else. I know that I ended up on one
ward, then I was transferred to another. I didn’t know what was wrong with me and I
think I slept more than I was awake. They treated me for meningitis with acyclovir
which was fortunate because when my lumbar puncture results came back they
showed that I had acute herpes simplex encephalitis and the treatments are
the same. I’ve got vague recollections of the first week and I have more vivid
recollections of the second week in hospital. I remember a group of doctors
standing around me and talking in a foreign medical speak language, and me
not really not knowing what was going on not even really what was the matter with
me. I just either slept or pretended that I was fine, even though I couldn’t find
the words for things when they asked me questions.
Which they were doing to establish where I was in terms of cognition and whether
I had any significant brain damage. I can’t really relate the rest/ I can’t
really narrate the rest of that stay. It was emotional in some ways, I just wanted
to be at home with India but I was so ill that they wouldn’t let me come home
even when I petitioned them to let me go. Nearly a month later and when they’d
finished the extended course of acyclovir I was released and it felt
unreal. My friend Isla picked me up from the
hospital and drove me home at 9 p.m. so that Paul didn’t have to bring India
with him to do the same job. As for the next few weeks I was adamant that I was
okay, and that I wanted to go back to work as soon as possible. I didn’t really
have any sense of what encephalitis was or how it had affected me, I just
knew that I had to keep going and I needed to get back to work.
Paul on the other hand had other ideas. He’d looked online and he’d researched encephalitis. He knew the effects it could have and the high mortality rate
of the illness, and I know now that he was terrified. Meanwhile I just felt like
I was letting everyone down: India, Paul school, my family. I had no real concept
of what I’d been through or the lasting impact that it was going to have on me.
Those immediate months after being in hospital were not straightforwards.
Whilst I wanted to be normal I suffer daily mini intense migraines
sometimes 3 times a day and there was a question mark over whether these
were epileptic micro seizures. As a result I had been given the treatment
drug for epilepsy that’s known that has known capacity for causing low low mood –
definitely not what I needed! Fortunately and in retrospect these
migraines were just that: migraines, and my brain recovering from the damage had
suffered with the encephalitis. Fortunately I rarely get migraines
anymore and I haven’t taken anti epileptic medication for well over a
year now, and a more recent EEG scan
showed no visible signs of epilepsy thankfully! Other noticeable
after-effects that I found really frustrating were losing track of what I
was saying mid-sentence almost like my brain had been wiped, and I had no sense
of where I came from or where I was heading with what I was saying.
Perhaps particularly frustrating for someone whose strength with words has always
been a key part of my identity and on top of this an overwhelming fatigue.
Don’t get me wrong I’ve always needed a good night’s sleep, but suddenly I needed
naps in the day an early night bed by 9:00 every night, and to some extent this
is still something I’m battling to this day. 3 months after my discharge from
Queen’s Medical Center and the intense herpes simplex treatment that I’d
had I saw a private specialist via Paul’s work health insurance. Don’t get
me wrong I can’t fault the NHS, but I think encephalitis is so uncommon
that they really don’t know which path to take and so there was a lot of
shuffling going on post-discharge. And I think when I saw this specialist it was
the first time that it hit me how severely unwell that I’d been. The doctor
I saw was strangely the father of a little girl I had taught, so we’d met
before. Which was a bit strange realising that he could see my medical history and
everything that that entailed. Fortunately he was really professional
and empathic too, which was a relief. He ordered a brain scan which showed
significant brain damage as a result of the infection, and I think that this
marked a real – the beginning of a real downward spiral. I felt broken, lost and
pointless and I don’t think I’ve ever felt so low in my life. I felt like a shadow of who I’d been. I felt, and I still feel
this, that I’d lost the one thing that was unwavering in my past: my
intelligence. I couldn’t communicate with anyone about how I was feeling and this
just came out as self-hatred and general negativity towards life. When I tried and
failed to go back to work after Easter 2018, I was in the lowest point of my
life. I had to keep on being a mummy, but apart from that I was a complete failure
and felt totally broken. It’s hard because I wanted this talk to be
positive, but I also feel like I have to be honest about what I’ve been
through. Encephalitis has knocked me for 6, and there isn’t a day go by when
I don’t actively notice the impact it’s had on me. My undergraduate degree was in
English from Cambridge University, and never have I said this as many times as
I have done since the encephalitis. I never used to brag about this academic
achievement, and so as a primary teacher few people knew this about me until the
last couple of years. But now I say it more frequently than I’ve ever said it,
to prove that I was once clever. Post- encephalitis as a primary school
teacher there’s been numerous hurdles to overcome and the biggest one, and the one
that trips me up every single day is learning names. Once upon a time I could
learn 32 names in little over 24 hours. I felt that it was really important for me
to be able to recognise the children in my class and talk to them like they
matter. Fast forward to post-encephalitis and
this is something that I find really difficult. 30 children in front of me
and my short-term memory struggles to recall their names from one minute to
the next. One minute I’ll know it, the next minute it’s gone! I find it so
frustrating but, and here’s the but, I am finding ways to cope. I’ve steadily
realised that my visual memory is better than my auditory memory and so I’m using
this. In my classroom on a door opposite my desk and behind where the
children sit when I’m teaching them on the carpet, I have pictures of all of the
children in my class. They’re pictures that I took which feels like it’s
important and as I created the images, and under the pictures are their names
large enough that I can read them easily. Somehow this is helping enormously. Not
because I constantly have to check who is who, but because seeing their names next to their pictures becomes an image that I
can see in my head even when I can’t see the board. For example a little boy in my
class called George. His picture is of him smiling cheekily but every time I forget
his name which happens all the time I can visualize in my head that photo and
his name written under it and all of a sudden I know it again! Having been back
at work for nearly a year now this is a new learning for me, but it’s a positive
and one that I’m pretty pleased with myself about. Even this isn’t without its
challenges. I can’t tell you how many 5 year olds have giggled at me over
the last half term because when we were reading Snow White and retelling the
story I kept calling Snow White Goldilocks or Cinderella or another name
from another fairy tale. The children couldn’t see into my mixed-up brain
whereas I could practically feel these nouns swimming around in there. But
children are remarkable, they laugh at me but in a nice way and this makes it feel
all right. It’s not without its struggles but I feel like I’m getting there. The
Encephalitis Society have been amazing for us as a family. In that
period, that first period post-illness they were on the phone whenever we
needed it, and they’ve sent us some really invaluable information that’s
really helped. Unfortunately they can’t cure the lasting and fairly significant
damage to my brain, but it’s helped enormously to know that there are other
people out there going through the same thing. Encephalitis has rocked my
world, it’s rocked my family’s world. I’m not
the same person I was before I had it and it’s not, it hasn’t been easy to
adjust to. My family have been amazing but it hasn’t been without its
complications. My daughter was only 2 when it happened, now she’s just turned 4.
There are things that I struggling struggle with: remembering what nursery
tell me she’s done that day, remembering what she’s just done and explaining this.
Short-term memory can be a real issue. Encephalitis has challenged us as a
family and at points post-encephalitis I was so low that I couldn’t see a future, and the frustration that I felt often
made itself felt in conflicts with my husband Paul. And it’s challenged us to
the edge of what we can cope with but I feel like we’re getting there. I won’t
ever forgive encephalitis for damaging my brain, my self-esteem or the
impact that it’s had on our family dynamic. Paul became a carer and our
balance was thrown off kilter. I can say all this now and I haven’t really talked
about it openly, but we as a married couple have been to the edge. Fortunately
I can add “and back again” to that, but not without focused repair. We’ve been
incredibly lucky to see an amazing counsellor through Relate. Who really gets
us – she really does! She can see the imbalance in our relationship has been
created not just by encephalitis but other things too, and she challenges to
adjust our expectations and relations as and outcomes as a result. I don’t think we would be here at this conference today if it weren’t for her
insight and compassion. She’s brought us back from breaking point – a breaking
point that was at least partly caused by encephalitis. Because Paul has been
there for me throughout, the imbalance at times has been really difficult to
adjust to. Paul at times has been the carer and me the cared for, and whilst I
appreciate this, it’s also not easy to accept and it’s left me feeling
powerless at times. And I repeat this: we’ve come a long way. We’ve worked hard
together with some amazing support from Jasmine our counsellor, amongst others.
We’re more of a team now, we’re a balanced team. The encephalitis has
not and will not destroy our relationship or our family, but it’s not
been easy. I wanted to come here today and talk about encephalitis,
answer questions, try to be positive, but its massive! There are good days and
there are bad days, there are longer-term implications of acquired brain injury
and the exhaustion that I’m left with, but I’m getting through and that’s got
to be something.

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