Ruth Fitzmaurice: Five kids, a dad who only moves his eyes and a mass of medical equipment

Broadside: My husband’s motor neuron disease has made me wildly inappropriate; I have no social filter

Photograph: Thinkstock

Photograph: Thinkstock


Friendship week: From best mates to bromances - All week on the, we take a closer look at friendship

My very best friend in the world is a tree. Hello, Tree. Tree is a beautiful birch. She sits outside my window. Her boughs rattle in winter and sway in spring. Tree is also a she because I need her to be. We share deep thoughts over coffee.

“Shhh. Momma is talking to her tree,” the five ducklings hiss. They creep in and fold themselves around me but know not to interrupt. I have trained my ducklings well. Daydreaming is a valued skill in our home. Dare to interrupt it. “Momma, you just broke an important daydream,” my eight-year-old will scold. “Sorry,” I will say, with real regret.

This little house of ours holds a lot. A family of five ducklings, a father who can move only his eyes, a daydreaming mother, a mass of medical equipment that hums and squeaks. The swirly, mad vortex of motor neuron disease. We are spinning, surviving and trying not to get pulled down the plughole. Footfall is high in this house. I should hoover more. Nurses and carers steer tactful soft shoes around us all. Lint balls gather in corners. My husband needs a ventilator to breathe and a person to stay with him at all times.

Often that person is me. I spend a lot of time in this house and Tree really helps. It is cosy in here looking out at Tree, and she is my very good friend.

When I was a schoolgirl, I was runner-up in an art competition. The minister for health gave me a prize. I drew a grey pencil drawing of a sad girl reading a book. Outside her window, a group of children played in full colour. My slogan read: “Life is no fun in the company of one.” Company is not a problem for me these days. I am just so popular in here. How could I ever be lonely in this house? I am morally opposed to this slogan now and the fact that I won. What on earth were they thinking? What about the strength of solitude? Aren’t we all ultimately alone? Thank goodness it was only a runner-up prize. That schoolgirl knew nothing about this life.

My eight-year-old son loves the word “inappropriate” but I don’t think he knows what it means. His use of it is downright inappropriate. “Don’t talk about me to other people,” he scolds. “It’s inappropriate.” It seems that eight is the age of reason. The age children see their own nakedness and roar, “Don’t see me! Don’t judge me!” They scold their mothers often. My own mother sees too much, even from the end of a phone. She holds that special mother key. Turn it an inch and the tears will flow. My mother might be my friend but really she is something else. She is the only person who will ever worry if I leave the house without a coat on.

No social filter

Motor neuron disease has made me wildly inappropriate. I have no social filter. I don’t remember the rules. I worry about wearing this pain in company. How much is too much to show? Simple questions such as “How are things?” become impossible. Thank God for old friends like wishing wells. My pain is a stone with them that won’t make a splash.

New friends are tricky. Maybe I don’t need new friends if I am popular in here. My three-year-old is screaming at me because his shadow won’t go away. He growls his drunken toddler slur: “Stupid Momma. Stupid shadow.” These children are everything but they are not my friends. Mostly they are not even friendly. The schoolgirl was right. I am a pencil drawing in grey. I am so popular in here it stinks. Even the dog and the cat agree. I am talking to a tree, for God’s sake. I need colour and company and new friends.

Donning my armour

Company scares me. I must venture out with armour on. My slogan will be a happy one.

So many beautiful women greet me and take me into their company. In the right frame of mind, in the right moment, I am enjoying this. The subtle orchestra of the chit and the chat. I am enjoying it all. Eye rolls at the husbands. He never helps. Problems at work. I got him a gym membership for Christmas.

I am enjoying this, really I am. I just feel a bit tired. I am fighting the feeling to just lie down on the ground and cover myself with a blanket. I smile at them all and feel like an alien. Their problems are just as important as mine. How are things? I have no language for this. I will go home to my husband because he is my friend. Eye roll. He is a friend. He is my very best husband. Don’t see me. Don’t pity me. Stupid company. Stupid motor neuron disease.

But company keeps calling and I am too stubborn to quit. Somewhere above the chit and the chat a woman I barely know speaks. She announces that her marriage has broken up and her husband is living in the shed at the bottom of their garden. The collective clink of coffee cups goes silent. It’s a show-stopper. We all mutter condolences. Company is humbled and so am I. And then, blessedly, the chat moves on.

Walking home alone I laugh out loud, not at this woman’s pain but at my own stupidity. The rules were all in my own head. Wear as much pain as you like, or wear none. Stupid rules. Stupid me. I laugh because colour is all around me and company is my new best friend. Hello friend.

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