The P-word

It was a while until I – or anyone for that matter – used the word. My legs didn’t work. I was numb from the chest down. Phrases like ‘severe weakness’, ‘loss of sensation’ and ‘loss of movement’ were thrown over and around my hospital bed. I can distinctly recall the first time I heard the word used in reference to me. A nurse stood either side of my bed and as they were preparing to roll me onto my side one introduced me to the other, “So, here’s Helen. She’s paralysed from the chest down.” Paralysed. The nurses continued to speak but I didn’t hear any of it. They pushed and pulled the heavy, inanimate mound of flesh and bones that pinned me down, rearranged some wires, and left. They left the word hanging in the air above me, staring down at me. Paralysed. Of course I was paralysed. However, that word seems to hold more permanence to it than ‘weakness’ doesn’t it? Because people that are paralysed use wheelchairs. People that are paralysed stay that way. People that are paralysed are disabled. Like the sound of the ocean captured in a shell, the sound of my shallow breathing swirled around my ears and I felt suffocated by an inability to expand my lungs properly. A big deep breath would blow that word away. A big deep breath would rid me of the heaviness that pressed onto my chest since hearing that horrible word and I could sleep. But the paralysis had crept its way up and I could no longer sigh or cough or sneeze, or take a deep breath when I needed to. So I did all I could do at that point. I just lay there.
It’s incredibly hard to explain to someone who hasn’t been paralysed just exactly what it feels like. I could tell you it’s like when you fall asleep on your arm or sit cross legged too long and your brain forgets where your limb is – but that’s not quite it. I could tell you to imagine having the numbness you have after injections at the dentist all over your body – but that’s not accurate either. I became to feel like a head and arms. Just a head and a pair arms wildly waving about while everything from the armpits down was redundant, a dead weight that had been steamrollered onto the bed. Looking at my legs, I would try to believe that they were mine. I recognised the little pudgy toes, the scar from a hideously infected insect bite I got while in Australia, and my weird chubby kneecaps. I didn’t recognise the way my feet drooped from my ankles or the way the flesh hung from my shinbone like the meat on a dead pig, so I tried not to look. I looked instead at photographs of my legs doing interesting things in the past (because you can imagine how helpful that was). My legs jumped down sand dunes, they balanced bottles of beer between the knees, they propped themselves up on the dashboard and climbed up spiral staircases. How had they become so lifeless? How could I touch them, the flesh of my hand against the flesh of my thigh, and feel nothing? I pinched the skin and scratched it, slapped it, punched it. Nothing. It had happened so quickly.
So, while my legs didn’t work I concentrated on what did. My arms. I’d never had particularly good upper body strength and I began to regret that. Though I was numb from the chest down, I was experiencing neuropathic pain, similar to the ‘phantom limb pain’ experienced by people who have had limbs removed. I would feel the urge to move to try relieve the pain so learned to grab on to the bars of my hospital bed and lug my body around until I was in a better position. You don’t realise how heavy your flesh and bones are until you’re trying to drag them around. Soon I could pull myself up the bed, prop myself up with pillows, or roll onto my side – all hard work without functioning stomach muscles! It gave me a little independence, in the sense that I could roll myself over for someone to wash my arse for me, but it was independence all the same.
Eventually the consultants came to me with a diagnosis, a reason for all that I had been experiencing in the couple of weeks that felt like Groundhog Day. Neuromyelitis Optica. It causes inflammation of the spinal cord and optic nerves. That’s about all I took in at first. It is a rare and complex autoimmune condition that I have since learned a lot about, but at that point all I cared about was the next thing left hanging in the air for me to ponder. “You could be walking again, using crutches, in two months.” Sixty days. Just a couple of pages on a calendar. Not long at all compared to the forever I had been imagining. And so the countdown began.
My treatment consisted of intravenous steroids to reduce inflammation, plasma exchange to, well, exchange my plasma for some that wasn’t full of antibodies trying to kill me, and physiotherapy. We had an action plan. We had positivity. We had a name for my nemesis. My physiotherapists’ first trick? Try to recreate the opening sequence of Kill Bill where Uma Thurman is waking from a coma and trying to wiggle her big toe. So I did (minus leather catsuit). With supercharged clean plasma coursing through my veins and a challenge to be on my feet in 60 days I reluctantly looked at my alien legs spread out in front of me on the white hospital sheets, and focused my attention on that pudgy big toe on my left foot. “Wiggle your big toe”. “Wiggle your big toe”. The effort took my breath, it drained my energy. Each time I tried and failed, I’d grit my teeth harder, focus even more until my brain fizzed. And then…


11 responses to “The P-word

  1. Very descriptive. I read all wanting to know what was written next. Please don’t stop here.

  2. Wow. The video made me cry. What a great story (opener). I am eager to read more of your posts!

  3. Cool, amazing how a name and a deadline can kick start everything. Congratulations, and I can’t wait for the next post. x

    • Thanks Maggie. And yes it was certainly an encouragement! The plasma exchange treatment was the key though, it gave my body a chance to get moving and start feeling again. Incredibly grateful to blood donors for that.

  4. Wow. Had never heard of the condition before now. The way you’ve written it made me what to read to the end. Thanks.

    • Hi Wendy, thanks for reading. It’s a very rare condition, I think in the whole of the UK there are about 700 diagnosed cases. I’m still learning about it myself and hope that others (with or without the condition) get the opportunity to do the same.

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