This is a Disabled Pagan Voices Project Submission
They say that life can change in the blink of an eye, the skip of a heartbeat. It took longer than that. Life was ticking along just fine when life itself took a side swipe, knocked me off balance. Nothing I could do but go with the flow and try not to be swept out to sea.
A&E on Friday night is noisy with frustration as clocks tick slower than they have ever tocked before. Alcohol-fuelled tension keeps everyone on edge. My heart was doing its own thing, dancing away to a new tune. It was enjoying its liberation. After two days, it was time to get someone in authority to rein it in. Medication prescribed to sedate this errant heart brought it under control. Success within hours. False sense of security, that’s all.
The problem with your heart abdicating its duty is the knock-on effect. Layman’s explanation – the irregular beat stirs up debris nestling in the heart’s bottom chambers. When heart gets back to work, it merrily pushes this crud around in the blood flow. And that means you are at risk of stroke. This has all been carefully explained to me, aspirin a daily reminder.
Saturday evening placebo TV strobes in the background, laughing happy people interspersed with blasts of adverts. I glance over to my husband of many years to see if now is the right time to cajole him to change channel, turn down the volume, anything to dampen Metallica gigging in my head, headache chasing round and round the cavern that houses my spinning brain. I can’t see him properly. It’s like looking through a heavily smoked pane of glass, dark grey obscuring his face. Oh fuck. Visual disturbance. Dizziness. Headache. These are the signs of that stroke they keep warning me about.
‘Brian,’ I say. ‘I think we have a problem.’
OMG I think I’m having a stroke
We’ve all seen the adverts on TV. FAST. Get help quick before the brain sets on fire. That one. Brian dialled 999 and asked for an ambulance. Paramedics duly attended, bringing a chill breeze from the February air with them along with their oversize bag full of the tricks of their trade.
I explained that I had been in A&E and I was concerned that the symptoms looked like I was having a stroke. They checked my blood pressure, attached sticky pads to my chest, took a heart trace.
‘History of migraine?’ they asked.
‘About twenty years ago,’ I said.
‘It’s a migraine headache,’ they said. ‘Take paracetamol.’
I was stunned.
‘Don’t you think it might be more serious than that given my history?’
‘Calm down,’ they said. ‘You’re getting yourself stressed. That’s what’s causing the symptoms.’
I took myself to bed to nurse the headache, my new companion who had arrived to stay. Overwhelming tiredness led me to spend more time in bed in a few days than I had in the previous few life-filled months.
I kept going over what had happened. Had I really created these symptoms through anxiety? My sensible, logical brain told me that I hadn’t, that I needed help and fast. My tired, damaged brain lost confidence, picked up on the judgment passed on me, didn’t know what to do and didn’t have the strength to do anything.
I have – correction, had – the greatest of respect for my GP whom I have known for a long time and was wonderful during my mother’s decline with dementia. I explained the symptoms, what the paramedics had said about me causing the symptoms by worrying. I’m not a worrier. I take life as it comes and I thought my GP knew this, so I wasn’t expecting what she said next.
‘The paramedics are right, Portland. You need to calm down.’
What I couldn’t articulate at the time which, with the clarity of hindsight I now realise very clearly, was that I wasn’t worried about having a stroke in the future. I was worried that I’d already had one.
So, I went back home and stayed there for the next four days. In the quiet times, the dark of the night times, I chased thoughts around in my head. What made people see me as a person who created illness from anxiety? I found this disturbing. When did perceptions change so much? I felt vulnerable and at a low ebb.
On Friday – six days after the initial incident – I’d had enough. The headache wasn’t going anywhere. Surely even a migraine must go away at some stage.
At five to three in the afternoon, I had an appointment with a doctor whom I had never seen before. She loved my boots – sensible and sturdy, decorated with flowers. She described me as fifty-nine years young. She asked why I was there. I said I needed re-assurance; I needed someone to tell me I hadn’t had a stroke. She looked at my notes, asked questions.
‘Portland, I’m not in a position to give you re-assurance. I don’t have the information to do that.’ She picked up the phone, spoke to the on-call specialist stroke nurse at the local hospital.
‘Go straight to A&E and they will see you. If you can get there before five, the stroke doctor will still be there.’
I made it before five. Within an hour I’d had a CT scan which confirmed I had had a stroke and six days after that stroke, I had people who were listening to me, giving me the care I should have had in that critical window just after the stroke.
Was I scared? Of course. When someone says you’ve had a significant stroke, you don’t know how to process that – so many questions. Will I have another one? Will I get better? Some questions you don’t want to ask out loud. You don’t want to hear the answers.
The hospital staff understand that. They tell you gently, patiently. They brought a computer screen to my bedside, showed me the scan. Pointed out which bit of my brain was affected, dark grey streaks marking the damage at the back, the damage to the vision centre. Tests confirmed partial visual field loss.
And there it was gone
So, what does damage to that part of your brain look like?
I seem to have a black hole in the top left of my vision where things disappear to. More puzzling than not seeing things is seeing things that aren’t there – visual hallucinations. The doctor described it as Phantom Limb Syndrome for my vision. The brain knows there is missing information, so it fills the gap with information drawn from elsewhere, often totally unrelated scenarios. I find myself ducking from objects flying across the room or trying to bat them away. My mantra for several days was: ‘They are not ghosts. They are not ghosts.’ There’s nothing there.
The rest was yet to come, yet to filter through the general unsettledness.
Home again, home again, jiggity jig
Going home from hospital is being turned out on your own in the wilderness. The physio did tests. I can walk upstairs, turn around and walk back down with no problems. I can touch my nose with my finger, even with my eyes shut. I can stand on one leg with only a hint of a wobble. I can remember what day it is and where I am. I can join dots.
The other problems aren’t so obvious and can’t be evaluated, measured, ticked off someone’s list. I didn’t even notice at first. When you clean a room, you start with the empty boxes you are tripping over before you pick up the Lego bricks buried in the carpet, but at the end of the day, when you settle down to rest in your PJs, it’s the persistent unsuspected assaults on your feet that make life difficult.
Leaving hospital was the next stage in my journey from the old me to the new me, whoever she may be.
Driving is freedom, independence, a social life. Being dependent on others is taking a lot of adjusting. There’s much commitment from others, freely given. No need to ask. I am touched and so blessed.
The list of things I struggle with seems endless – reading, understanding numbers, remembering anything – including the long words that describe my problems. Prosopagnosia is the ability to recognise faces which I can no longer do. Quadrantanopia is the precise description of my visual field loss. I get lost. Frequently. Loss of concentration affects everything – cooking is now a H&S risk. I have burned more things in the two years since my stroke than I ever did in all the years previous. Neuro-fatigue shortens every day. Thinking makes me tired, reading makes me tired, feeling sorry for myself is exhausting.
Life is such joy at the moment.
Actually, it really is.
What happens next?
You wait and wonder.
You wait to see if there is any improvement, any deterioration. You wait to see if one day soon you will go a whole day without a headache, without feeling exhausted and needing a nap. You wait to see if you will feel anything like your pre-stroke self anytime soon. You wait for the review with your consultant – 1st June. You wait for the assessment of your vision, so you have some idea of your potential future. You wait to see if you will have another stroke.
You wander the hinterland, trying to find your way back to certainty, to the person you once were. There is no map to take you there, no satnav that guides you to the person you used to be. Glimpses keep you searching but the pictures fade to sepia; were you ever the person you think you might have been? The images change from who you were, to focus instead on who you are not. I no longer see myself drumming with the band; I see the djembe forlorn in the corner. I see myself unemployed, unemployable, twenty-five years of fighting homelessness discarded. Facebook brings me daily memories of the old me. I am amazed. Did I really do that? I cry. Often, easily. (Did I mention that emotional lability is a side effect of stroke?) I confess I am particularly fond of the photo of that woman crashed out face down in the ashes of the campsite fire on the day we danced morris at Stonehenge. That was me?
Rehab in the leafy surrounds of bohemian Moseley forced me out of hiding, forced me to explore this strange unknowable no-man’s land. My mission was to find the truth among the teachings that would let me see my future.
The truth, as all truths, was hard. There is no recovery, only coping. There is no return to who you were. There is but one way forward – embrace the new you.
I had a stroke four years ago that has changed my life in many ways.
What if I had never seen again
flames flickering in the night at Samhain,
fat seals in the sun, snorting water,
chill morning mist, eerie, drifting,
sleepy-sweet bedtime smiles?
What if I had never heard again
the mellow of my daughters’ harmonies,
the drums and bells of morris men,
dark echoes of thunder rolling by,
the cat meowing welcome?
What if I had never smelled again
white lilac waving fragrance in the air,
beckoning chips, hot, fresh fried in lard,
dark earth breathing wholesome after rain,
motorbikes’ angry engines?
What if I had never tasted again
sweat trickling off lips under summer sun,
butter dripping off bread well toasted,
greasy lamb with mint, well roasted
dark red-wine coated kisses?
What if I had never felt again
a lover’s hand soothing my aching back,
the prickly softness of his fresh cut,
the stickiness of tiny hands,
hugs of love holding me tight?