The time comes to return to Ireland and we have to let them go. A six-week holiday turned to six months is the furthest we could stretch. It is March and Jack needs to start school in September. I don’t want to go back. Black clouds are gathering and there is no bargaining with them. Simon’s arms are so weak he strains to lift them up and his voice is getting quieter. They bundle him on to the plane where his wheels feel so confined again. The freewheeling days are over.
The sense of dread feels endless. As we descend into dimly lit cloud and dark green fields, I have a horrible realisation. My superhero costume has slipped. Humans are the trickiest of plants. Over- or underwatering may yield the same results. I am no superhero. Nothing I can do will stop MND or save my husband.
Fear
I am not afraid of dying and I never have been. This may be the truth or maybe it just feels that way. As a teenager, I sat in the family car en route to a holiday in France. My parents were in their Riverdance phase. They blared Celtic beats on repeat as we drove down a monotonous straight road through a forest. Ireland had just hosted Eurovision and I had finished my Leaving Cert.
Enormous trees slipped by in quick succession. Tall perpendicular trunks dazzled me; they stretched for miles in every direction. The moving car spun trees like a zoetrope while I stared out the window. I was overwhelmed with a feeling of insignificance in the vastness of a spinning world.
This existential tree moment is the closest I’ve ever come to fearing death. Possibly it was just the Riverdance music, though. The collective sound of so many Irish dancing feet still freaks me out. They are just so damned synchronised.
Perhaps chronic daydreamers don’t fear death because we are used to slipping away. Death could be just another dreamy escape. Michelle drove up the Wicklow hills in her jeep recently and parked to lie on the roof for some stargazing. The night sky was so bright that she raised her hands right up into it. She could feel herself floating away. It was exactly like swimming in stars, she said.
Aifric describes her brain like a scene from James and the Giant Peach. Her cluttered, chaotic thoughts are the hundreds of birds on strings dragging her peachy brain over the ocean. Swimming in the sea plunges that peach so deep in cold that the birds disperse and scatter. Her brain breaks free from heavy thought.
It feels like arrogance not to fear death when Simon lives so fearfully close to it. What the hell do I know in my dumb healthy body? He is Dylan Thomas raging against the dying of the light. This burning rage is not something I can fully understand. He cannot seem to contemplate his own departure. The real problem with rage is the burning part. There is no peace, and burns can really hurt.
I have often felt the thrill of floating far from here. It happened deep-sea diving in Australia once at the Great Barrier Reef. My boyfriend at the time was a cautious diver and I had never tried it before. The underwater world was a revelation. Cartoon colours sang in my brain. I joined a shoal of fish and happily tried to swim away. Any deeper and the bends would have taken me for sure. I was pulled back by an ankle grab and reluctantly returned to the surface.
Not fearing death should never be confused with a need. I have no desire for it, but death just won’t shut up. Sharing your home with illness means it cannot be ignored. Hello Death. MND brought you to the party and you are both sneaky gatecrashers. Neither of you got invited but I will keep my manners in check. It’s rude to ignore house guests and impossible when they are so rowdy.
The sea and the universe are breathing, says Michelle. Sometimes, if you’re lucky, you can breathe in time with them. She sat on a mountain once in America looking down on a valley far below. She sat very still and was so high up that it felt like she left her body. The trees and the sky and the mountains were all part of the same thing. Michelle was just part of it too. She was breathing in time with the universe. It is worth pointing out again that Michelle is a total hippie.
Simon breathes in time to a machine. Fear surrounds the plugs, pipes, power cuts and the countless malfunctions that could end his life. I love him so I don’t like that he is afraid. I hold his hand and doubt he will ever speak to death or stop being scared of it. And yet he is the bravest man. In some ways, Dylan Thomas really sucks.
When you sea-swim in the depths of winter with only a rubber hat for cover, a funny thing happens. Stay in the water too long and you don’t feel like coming back out. The cold seeps so deep into your bones that your brain begins to hear an ocean song calling you. This song is something way better than Riverdance.
Dreams and I float side by side in such seas. I stare at the horizon hungrily. My body feels the urge to keep relaxing and just drift away. A profound peace comes over me and I could become part of this wave for ever. I wonder if this is what dying feels like. A gentle thought slips by, within close enough range for me to hear it. My children might need me. With wobbly limbs, I reluctantly climb out of the water. I am stumbling like a gangly foal.
What is this strange magic of the sea? I dive into a dancing, breathing ocean. The cold casts this spell of fearlessness that defies life and death. The only thing cold cannot defy is the seaweed. I am petrified of the stuff. Tangles of it make me scream like a little girl. My mind wants to merge with the ocean, despite seaweed, fear, and maybe the odd jellyfish.
Lots of things scare me but death just isn’t one of them. Along with seaweed, there are spiders and earwigs and heights of any kind. I got vertigo so badly as a kid climbing a tree that my uncle had to reach up and rescue me. I was clinging with my eyes closed to the very lowest branch.
As a child I was too afraid to jump. I cringed in the corners of Portsalon pier in Donegal. Younger kids hurtled past me into swirly waters below. Even in a life jacket, I still couldn’t do it. The fear is still with me, but these days I jump anyway. I have always been the world’s biggest ninny. Survival simply stepped in. Circumstance has struck me into some kind of groundhog day sea swimming time loop.
The fearless spell will last just as long as you stay in the ocean. It drags at your limbs near the water’s edge. Back in the busy world, the brain gasps and quickly forgets. That’s why we will plunge again and again. We are drawn back here by the pure romance of breathing in perfect synch. I share this magic with my Tragic Wives, Michelle and Aifric. We linger at the cove and dive in.
Kicking Cars
What do you do on dark days? How do you dance when everything you could possibly want comes exactly as it’s being taken away? MND is like water torture, slowly drip-drip-dripping. A tiny nerve ending, a small piece of strength, gets stolen every single day.
Bleached goodbyes in Perth seem far away in cold Greystones where we wonder how we can ever get used to Ireland again, we look to the grey skies and feel stumped. Dirty roads, dirty cars says a two-year-old Raife. Yes, my love, our world looks smudgy.
When superheroes lose their powers it never ends well. They get dramatically destroyed. I imagine exploding in company. I could self-combust at the supermarket in a fine sticky mess over mild chats about all the rain we’ve been having.
Why can’t I wake those nerves up? Shake them back to life? Slap him in the face? Home from Perth I get so angry. MAKE IT STOP WHY CAN’T YOU MAKE IT STOP. STAY WITH US, WE LOVE YOU. WE NEED YOU, WE DON’T WANT TO BE HERE WITHOUT YOU. Then I cry from a very dark place and fall deep.
North Cottage got flooded so we fixed the roof and put it on the market. A brief glance, a shivery goodbye, we set forth for a house in Greystones and the glow of living among people.
Simon’s arms are so weak he is upgraded to a power wheelchair. He whizzes down corridors, lifting carpets up like waves. He drives the boys by himself in the middle of the road right through traffic. His wheels form fantastic fuck off fingers to the terrible footpaths. My heart sings but it’s a warbly sort of song. I used to grip the back of his chair. My push is no longer needed. I wave goodbye to the bond and feel one step closer to loneliness.
Back in Greystones there is so much rain. It’s hard being ba
ck where we lived first married. That life was all cliff walks, coffees and casual strolls. This place is confusing and cross.
‘I wish that Dadda could walk like other Daddas,’ Jack wails at four years of age, ‘I want to cry for ever’. Then he makes a good stab at it. I know this cry so well. It’s from the deepest place. It stirs you up so you think your insides will spill out. It’s a disgusting physical mess of a cry that retches out the darkest parts. ‘It’s not FAIR,’ he cries and I know it’s not.
To see my boy cry like this makes me angry. But not just one boy. Two tinier hearts weep and roar in the wings; his loyal back-up singers. They understand even less but know for sure that it’s shit.
What do you do? You want your head to blow up in bright sparks because that is what feels should happen. You can’t curl into a ball in a dark room because children are crying with empty cups. They are fighting for toast. It has to be you because there is nobody else to do it, and without a superhero suit you think, what is the point?
An angry brain screams fast, angry thoughts. There is no hope for these beautiful boys. They will end up in rehab or drug addicts or on mystery milk cartons because their mother got shouting mad and their father stared at walls from his wheelchair and then died. Is this where we’re going because there’s nowhere else to go? His arms will stop working and he won’t be able to talk. I will want to die myself because it’s too large to bear the weight of it. We will have orphan Oliver Twist children. Oh please, sir, I want no more.
Froths of anger loom largely over every donation of help. Say hello to the ‘How are things?’ brigade. I don’t know how to answer. Away from Perth, the help offered just never fits quite right. Nobody speaks my language. I sit in Tesco’s car park crying and it’s no Dog Beach.
We drive a comical wheelchair car. It’s Postman Pat’s van painted blue. I drive slowly so Simon doesn’t get hurt by the bumps. He sits high in the back while his three boys fight and chat in the middle.
We all jump at the howl of a car horn. A low green convertible cuts me off at a T-junction. It’s just another road rage driver beeping us in traffic. We meet them every day, but today something breaks. The green beast stops at a red light up ahead and I pull up behind him. My body goes calm. ‘Back in a second,’ I bark at the boys.
What do you do with the pain, when you’re world weary and really angry at the same time? I have banged my head against walls. It bled and I saw stars. I have stared at my scrawny arms and imagined red gashes slashing fat blue veins. I have crumpled to the floor, hiding behind kitchen presses, hugging my knees for dear life. I have drunk and smoked, overeaten, undereaten, all the foods both good and bad. I have fought shallow breaths till my lungs burst, gasped till I’m numb, laughed till I cried and cried manic laughing tears.
I march up to the driver’s window and a middle-aged man glances out. ‘I was driving slowly because my husband is in a wheelchair,’ I shout. ‘Maybe you didn’t see the big wheelchair sticker?’ He waves me away and puts up the window. ‘You’re a very rude man,’ I shout, more loudly this time. He won’t look at me and I decide to kick the shit out of his car. I keep kicking and kicking until the light goes green and he speeds off again. I am breathing heavily but feel amazingly calm. An onlooker on the footpath waves, cheers and gives me a thumbs-up.
Angry tears have drowned me in dark pits. Buried in fits of black panic, there is no starry sky. I have picked my nails raw and bitten my hand so hard it broke skin, leaving toothy scar smiles. I have done all this and yet I am still here. I have never fully broken. Our dark world now fills me with the urge to break stuff. I want to break everything and just smash this shit up.
Returning to our Postman Pat van, I click quietly into my seat belt. The boys sit with open mouths. ‘Momma, what did you do THAT for?’ asks Jack. ‘Sorry, love,’ I reply. ‘That man was just a fucking asshole.’ I still feel calm but my hands are shaking so badly I can barely turn the ignition. ‘You said the F word!’ says Jack in delight.
‘Yep, your momma most definitely said the F word,’ says Simon and we laugh as the ignition key finally turns. The engine revs a mighty Postman Pat roar. Momentarily, this destroyed superhero feels remarkably fine.
Food
Love is glorious and so is food. Put the two together and dreams can come true. Food surrounds many of my fondest memories with Simon. Our love came wrapped in a burrito. His hand on a coffee cup made my heart flutter. When we first met I lost my appetite, but I got it back quickly enough. My soul was soon hungry beyond words.
A boy with a big voice impressed me at a party once. He spoke loudly with lofty principles on vegetarianism. ‘Take an animal’s life with your own hands if you want. But unless you’re willing to kill a chicken, I don’t think you should eat one.’ His words stayed with me and I stopped eating meat. The boy was Simon but I barely knew him back then. By the time we dated years later, we were both devoted to lentils.
The rush of first love brings Mexican food rituals every Sunday. Light-headed and spent, we hop in taxis that transport us to tasty huevos rancheros. We make moon eyes at each other in candlelit restaurants over pasta. Soul explosions and mouth-watering tastes stir together and we are still starving.
I watch our four-year-old twins eat their dinner in unison with finely tuned forks. Meals are a shared symphony. Sadie likes the pasta and Hunter prefers the sausage. One wordlessly assists the other so they can pick both plates clean. My family introduced Simon to Indian food. He accidentally ate some lime pickle and his face went alarmingly red. My four brothers clapped him on the back. When the teasing applause ceased, they were all invested as brothers. Both our families love nothing more than to bond loudly over good food and lashings of wine.
Our love got served up on a fine veggie platter. We insisted on a vegetarian wedding. Belligerent meat-eaters grumbled and growled for steak by the bar. We danced badly but groovily in the knowledge that no bird was sacrificed at the altar of our big day. Our Italian honeymoon made pasta ribbons of my heart. Love, mozzarella and linguine mixed with rapid heartbeats.
When the kids are small we have nights away in hotels. Simon hangs duvets between the cots and the double bed to soundproof our three boys to sleep. We sit on the big bed watching movies and gleefully order as much room service as possible. Hotels exist for lovemakers to lock themselves in bed ordering food. Isn’t that their purpose?
‘Thanks for making me a boiled egg,’ says eight-year-old Raife. ‘I feel so graceful.’ ‘Do you mean grateful?’ I ask. ‘Eh, no, I think I mean graceful,’ he replies. I will forever draw a giant scribbly loveheart around Simon, his talk and good dinners. I just cannot separate, love, food and the sound of his sexy voice. The three combined are God-given grace.
Back from Australia, food started to become functional. Simon’s voice got quieter. His mouth slid around slurred words. Fear formed around food and manageable bite-sized chunks. Chewing took time. Choking fits chased us around dinner. Giant smoothies were easier. We had bucket-sized Starbucks cups with big straws.
When appetite dwindled, another bond took its place. The carer–patient bond may not sound so sexy but it is stronger than the urge to eat.
By the time Simon landed in hospital with pneumonia, we were so silently in tune I could almost read his thoughts. My hands knew where to lift. A mere glance of his eyes could tell me where it hurt and how I could help. I stayed on a makeshift bed in his hospital room, pummelling his chest to assist each strained cough. I had left the three boys with my mother to live like this. I don’t remember eating. Perhaps there were some coffees and cardboard sandwiches. The important thing was to just keep Simon breathing. My hands could help him as long as they kept their focus.
When they whisk him away, I haven’t really slept for three days. I have forgotten all about my own children. I am like an extension of him, in tune with every need and he can’t breathe. ‘Help me, Ruth, help,’ he pleads and nobody can help him but me. My hands are keeping him alive. I am on top of hi
m screaming as his trolley is pushed towards ICU, pushing, pushing, pushing his lungs for air. They have to pull me off him and I cling with a vice grip. The door of the ICU slams shut and I am left outside on a bench.
He can stay alive by my hand. Without my hands I am sure he has just died. He needs me to breathe but the superhero me is spent. My arms are so weak from pressing his chest that I can barely lift them. I think Simon just died, I say. His life is now in the hands of others. I think of my children. Numbness and anguish rest side by side. It’s a feeling of pure relief.
Simon doesn’t die but he is put on a ventilator. The three hospital months that follow are blurry, punctuated only by the food we eat. The sight of their dad in ICU with tubes leaves the boys bewildered. They are delighted by the giant bowls of jelly and ice cream the nurses pile upon them. We sit in the brightly lit coffee shop munching mini packets of Cheerio hoops. We cross the road for better coffee at Starbucks and slices of cake. Food is something we recognise and it gives the day shape.
I am hungry all the time but I can’t seem to taste. Exhaustive planning meetings take place at the hospital in the hope that we’ll get Simon home. I sit with his family. The ICU has no windows. This is impossible to comprehend. The hospital mediator has the slowest voice of all time. I want to curl up on the floor and maybe eat a Pot Noodle.
I return home late at night to watch movies and eat Indian takeaway alone. It is tasteless. I am beyond tears and exhaustion. Simon gets a tube put in his stomach so he doesn’t have to eat at all. A tracheostomy at his throat means he can speak but only with a special valve. His voice is croaky slow and harder to understand, so he’s learning to use an eye gaze computer. He will come home with a team of five nurses alternating 12-hour night and day shifts. They wield big syringes to fill his stomach with a sticky sweet food supplement. It smells like cheap plastic ice cream, the kind that hurts your teeth.
I Found My Tribe Page 7