Meningitis in your words

Zak Moore's story

  • Location: England
  • Categories: Meningococcal
  • Age: Adult 25-59
  • Relationship: Self
  • Outcome: Recovery with after effects
  • After effects: Hearing problems
Zak Moore

This is an abridged version of Zak's story: 
The full PDF version can be read here 
The full Word version can be read here

No Mercy

The end came quickly: No fears, no tears, no ruined years - slobbering in a wheel chair. 

I had come home from yoga on a Thursday evening in June with a headache that felt like mild dehydration. “Should have taken water.” I thought.

I planned to watch late night politics on the kitchen TV with a bottle of chilled white. The light bounced off the worktops like flocks of iced flick-knives. My head hurt like hell as I bent to put the wine in the fridge: but that Hell was not hot enough to melt the shooting, sub-zero steel raking my retinas. 

I went to bed, telling the teens to keep the noise down. Mum had gone to Iceland - literally: She was doing a moonwalk in Iceland to raise money for breast cancer research.

My 16-year-old daughter found me comatose in bed at 12:00 the next day. Someone had called on the landline. That phone call and her subsequent actions saved my life. 

When the ambulance arrived she gave them the lowdown: “He drinks a bit, smokes a bit and is allergic to crab.” 

For the next 2-week period I was one of the Meninblack. 

Duchess

I woke up, in a dream, with my wife sitting in a chair beside me.

“Do you know who I am?’ 
  
“Yes” < What a stupid question. Imagine not knowing who you are? >

“What’s my name?”

“Your name is Clare” < She’s gone senile. I did not get too annoyed that she had forgotten her name. I was as mellow as a canal side coffee-shop customer on a slow Tuesday afternoon. 

I thought I might be in serious trouble. Since she could speak it could not be her tongue down my throat. Whose was it? I could not move my head to see who or what was tickling my tonsils. >

“That’s correct she said” < Okay! I knew it was correct or I would not have said it. (Still not annoyed. It was just a dream after all) > 

Hello Toulouse

Next, I woke up with my sister’s serious face (long time no see) staring at me from between my legs. It’s a very odd sensation for most people I assume.

I don’t usually recall dreams: waking in a second one was a treat. How did I get to Toulouse? That is where my sister lives with her partner and children: my nephew and niece. What were their names? By the time my sister left I could recall her partner and children’s names and asked after them, as if nothing was wrong. Nothing was wrong - in my mind, I thought.

I did not really register what Sis said…something about me having had a hard time. Everyone else may have had a bad time but all that bothered me was: ‘Why are the Stranglers all Welsh? And why were they all called David Davies?’ It seemed more important to answer that than listen to Sis. Where exactly was Wales I wondered. 

A silver penny appeared high up, silent and slow as a falling angel. It was just a dream? 

Shan Shan-a-gogo

One sunny afternoon, 2 weeks into my stay, Dr Shan, who I later discovered had been outstanding in her care of my wife, came over and told me there was nothing more they could do for me in the neurology ward. I would later learn that what they had done was save my life. In that act the team also removed many unanswered questions that I link to death and dying such as fear of failure, ridicule and staying brave in life’s last adversity.

The freedom I was going to experience over the next 3-month period of my life was, and still is, transformational. So if you see me in the street, and I start to cry, just walk on by. I am only having a moment - amazed at the beauty that I used to take for granted.

First things first: I was being transferred back to the hospital I had been sent from. And on that narrow escape as Hammond-not-Clarkson would say begins my homage to catatonia…

The full PDF version can be read here
The full Word version can be read here

"My recovery works across 4 elements. It continues. This is my first 3 months achievements and realisations since I left hospital."

Something changed (for the better)

This short summary is intended for people affected by this nasty disease. I am very lucky. I only lost the hearing in my left ear. 

My recovery works across 4 elements. It continues. This is my first 3 months achievements and realisations since I left hospital.

Physical: Look after your body and it will look after you. Get a trainer, if you can. Use free exercise routines from youtube or suchlike. I have entered a marathon in April 2016.

Intellectual: My recall time decreased from 30 to 3 seconds, or less. Use recency theory, spacing and interleaving to get the grey matter going.

Emotional: The journey is tough in places: If it gets you down drink a metaphorical cup of concrete and harden up. Do better to feel better.

Social: Take care of yourself first and foremost. Don’t hold negative thoughts or negative people close. Explain the situation when necessary.

That’s enough about me. What about you? If you are a suffering, recovering or living with a meningitis patient please steal anything you find useful from my sharing.

If you are grieving I humbly offer this: 

When we fell over as children and tore holes in the knees of our trousers the stinging pain was intense. The subsequent washing to get the wound clean was necessary and sore but done with tenderness.

Our trousers could be mended with some invisible sewing. Nobody seemed to notice any difference to us, or the trousers when we next wore them. We, however, felt different. Every time the scar on our knee rubbed against the rough patch of new cloth it made us remember the initial pain. 

Over time the painfulness goes away and the scar smoothly heals. Sometimes unexpectedly seeing the back of someone’s head, hearing a familiar phrase or smelling a perfume will trigger memories of brushing scarred knees on trouser legs. But as the mender used their skills to fix our trousers it is up to us to take up the invisible threads that we use to weave our lives into the communities and families that need our input.

Over time we grow out of one set of clothes and get other sets - but we always have a special set we remember with love.

The full PDF version can be read here
The full Word version can be read here

Donate to Zak's JustGiving page: https://www.justgiving.com/zak-moore-brighton/

Zak Moore
November 2015