Motor neuron disease, and twins !

Date Posted: 14.11.2012

A year ago, film director Simon Fitzmaurice, who has motor neuron disease, and his wife Ruth had just discovered they were expecting twins. Here, he writes of a new phase of his life :

People are amazing. I’m in the back of the car. We’re moving fast. Riding bumps like waves. My chair lifting off the floor. In the back with me is my friend Cait from Limerick. Crazy. Has me in stitches most of the time. In the front is my brother-in-law, Pierre-Yves. French. Crazy. Drives like a madman. But he’s not driving today. He’s on the phone to his mother, speaking in a rapid rush of French. It’s her birthday. My mother is driving. Bray. Crazy. Drives like a madwoman. I’m on my way to the hospital. Ruth’s Caesarian is taking place at 12. It’s 20 to 12.

It’s all there for the taking

I believe in birthdays. I count forwards now not back. I look ahead to 40 and think yes. Yes please. When I hear someone’s age I subtract mine from theirs. 67. Thirty years more than me. Old people are the worst. 99. Sixty years more. Jesus. I look at older people with awe. You did it.

It’s easier looking back. Twenty five. I’ve lived 10 years more. Yes.

Then I look at my children, six, four and three, and I see how much they’ve lived in their lives, how much they’ve become, and I say wake up, learn something. It’s all there for the taking.

Quite often, people who haven’t seen me in the last four or five years find it almost impossible to reconcile the difference in me in that time. I don’t blame them. I often find it hard myself. One way, for me, is to think I’m in my fifth year of motor neuron disease (MND). The second World War lasted for six.

Hospital nerves

I’m nervous. In my stomach. I’ve been on this road before but nothing changes. Pierre-Yves turns from the front, his phone still pressed to his ear: “Mum says did you know that Caesarian got its name because Caesar was the first child to be born that way?”

No, I didn’t know that. He slips back into the silk of spoken French. Caesar, I think. Caesar was born that way. Okay. The nerves in my stomach ease a little. We’re approaching Holles Street.

Important history

History. All around us. Buildings older than any of us. The news telling us what’s important every day. Yet there is a more important history. The things we gather. The photographs we hang. The things we use. Our living memory. The wake we leave behind.

When Ruth and I were searching for our first home, we walked into a bungalow we could not afford. Other people were walking around the house, in and out of doors. It was inviting, old fashioned, but immediately warm. The kitchen presses were simple 1970s-style and the window above the sink looked out on to a garden run round with flowering plants.

People stood in the garden. Ruth went out. I stood in the room alone. I opened a narrow press by the back door. On a shelf were a pair of gardening gloves, fresh dark earth still crumbling on the fingertips. I am transfixed. Embarrassed. Suddenly aware of doing something wrong. Why did I open the press? I shouldn’t be here. I close it quickly and hurry out after Ruth.

When we go to leave, I ask the estate agent. Yes, he tells me, the owner only passed away last week, an older lady, living by herself. The family are hoping for a quick sale. He smiles. I want to run from the house.

In theatre

They are waiting for us at the doors of Holles Street. They whisk us upstairs. My amazing people dress me in a surgical gown and hat. Time has stopped. I enter the room.

Ruth is on the table. The medical team are beyond amazing, ushering me in, helping me get into the best possible position beside Ruth – she later tells me if I had moved back and forth once more she was going to kill me. (I was nervous.)

They start. Ruth holds my hand. I watch everything. Sadie comes out feet first, screaming, blue. Then Hunter, bum high in the air, but silent. Ruth and I look at each other. They lay him beside Sadie and he lets out a roar. Ruth and l start to cry.

More mystery than history

So much history. The days I’ve lived. The places that linger, the single moment that stays, like something from a book you once read. Glimpses that live within us. We are strange.

We want to know. But we don’t. If we knew how the body worked, there would be no disease. If we knew the mind, no pain. But there is too much to talk about. More mystery than history.

I write in bits and pieces. Live in bits and pieces. People live in my mind. People I’ve touched. A coffee and a cigarette at a small wooden table, with a girl sitting next to me. Knowing and not knowing. Love.

Pathways. Taken. Followed. And we end up having lived.

Leaning against a car, on a sloped German street. Waiting for someone. Cloud and sun. It’s cold when it goes in. I look up, the warmth on my face. I see an approaching cloud. How long before I’m in shadow? I follow its path towards the sun. I catch myself. Close my eyes. Feel the warmth on my face.

A bigger family

My extraordinary wife. I wouldn’t change MND. Those two babies in my arms. Their warmth against me. Rising and falling with my breath. I wouldn’t risk that for anything.

Eucharist means thanksgiving. That’s how I feel. Thank you. Caesar. Thank you all who watched over Ruth and Sadie and Hunter.

I send out a thank you. A beacon. Something. From as deep as you can go. To as far as you can reach. I will hold this day inside me for the rest of my life.

Balls of life

Six months now. Sadie and Hunter are fat, beautiful balls of life, with hands that reach to touch my face.

MND fought back these last few months, leaving me in terrified panic, drowning for air. Last week I bit the bullet and admitted myself into hospital for the first time since I left in March of last year.

It was St Vincent’s University Hospital in Dublin, and the week I spent there changed my mind about consultants. The warm, sincere individuals I encountered treated me with the dignity of being a person, not a disease.

I don’t know how other people handle MND but it sometimes lays me so low that I don’t know how I will go on. I feel like I’m being tortured, a thousand little jabs, that on their own I don’t notice but slowly over time they start to hurt, until suddenly I’m crying.

They’re tiny things I barely notice, little hurts I’ve grown used to. Someone I love not understanding me. One of the boys telling me about something I will never do again with them. The hundreds of urges that I have to do simple human things but cannot do, like sit on a couch with Jack and read a book and hold him, put my arm around him, tickle him. I think I’m doing fine and then realise I’m holding myself together with I don’t know what. Something unbreakable that pain keeps trying to break.

And then my boys pass the doorway on their scooters. Dot. Dot. Dash. Or wander into the room in their pyjamas, in the middle of some elaborate world of lizards and kings, the youngest watching his brothers with silent eyes of glass. Or one simply stands in the doorway, looks at me and says: “Hi Dadda.” And I remember.

And I write. Writing is my fighting.

A movie reel of memory

Some days you can just see clearly. Our meaning, what we value, is the most private part of us, it may just define us. It shapes everything we do, everything we say, everything we feel, everything we dream. It’s hidden, from others, from ourselves.

There is no mirror to show us what we value. So often it is only revealed to us after the fact, in the long movie reel of memory. And when we see it, our heart stops, aching with recognition. It is a beautiful thing to see yourself.

As much love as blood

I’m still alive.

On the way home from the hospital I see my reflection in my computer. I have a black strap across my head and a white one under my chin, a pipe coming out of my neck and going over my shoulder. I look like some crazy desert horseman racing along the dual carriageway.

I’m still alive. I seem to thrive on things trying to kill me. I’m still alive you bastard.

When I die, don’t say Simon loved films, say Simon had as much love in him as blood. That’s all. I’m racing towards a bridge.

Source : Irish Times/Health, Tuesday 13th November 2012

Simon Fitzmaurice is currently working on his first feature-length film, in development with the Irish Film Board, and with his producer Kathryn Kennedy

Please choose a sector below

  • Embarrassment and fear of wasting a doctor's time affect cancer survival rates read »
  • Cancer patients 'struggle' to meet costs read »
  • My mother died from breast cancer - should I now be tested to find out if I carry the gene? read »
  • Women: Cancer Symptoms You're Most Likely to Ignore read »
  • Women unaware of breast symptoms read »
  • The Good Gift Guide for Chemo Chums read »
  • Life After Cancer read »
  • Exercise and Arthritis read »
  • Caring for a Person with Arthritis read »
  • Self Management read »
  • Diet and Arthritis read »
  • Living with Arthritis read »
  • Distraction is considered to be one of the best techniques for coping with pain read »
  • Million 'dementia friends' wanted for training read »
  • Popular anti-anxiety drug increases risk of dementia in elderly by 50pc read »
  • Women who look after their teeth and gums 'have lower risk of dementia read »
  • Get to Know the Symptons of Dementia read »
  • Lifestyle and home remedies for Dementia read »
  • Welcome to Dementiaville: read »
  • Louis Theroux on dementia: The capital of the forgetful read »
  • Panoroma : "Undercover : Elderly Care" read »
  • Basic Tips for Dementia Caregivers read »
  • What is Dementia? read »
  • Facts About Dementia read »
  • Diagnosing Dementia read »
  • Vascular Dementia read »
  • What to do if you or someone close to you has been diagnosed with Dementia read »
  • Treatment for Dementia read »
  • Warning Signs of Alzheimer's Disease read »
  • What to do if you or someone close to you has been diagnosed with Dementia read »
Case Studies
  • Loneliness can increase the risk of Alzheimer's in later life read »
  • Why is Alzheimer's disease linked to older age? read »
  • Sir Terry Pratchett: "I thought my Alzheimer's would be a lot worse than this by now" read »
  • Stress of Alzheimer's for families read »
  • Alzheimer's: When to stop driving read »
  • Alzheimer's: Understand and control wandering read »
  • Artificial butter flavouring ingredient 'behind key Alzheimer’s process' read »
  • A project with a holistic theme aims to improve the quality of life for people with Alzheimer’s read »
  • Strides in Alzheimer’s Research Presented at International Conference read »
  • Alzheimer's Disease Linked To Disrupted Sleep Patterns read »
  • New study maps Alzheimer's changes read »
  • Alzheimer's: How to help a caregiver read »
  • Vaccine hope for Alzheimer sufferers read »
  • Drama now on in Temple bar : How families are affected by Alzheimer’s read »
  • What is Alzheimer's disease ? read »
  • The Early Signs and Symptoms of Alzheimer's Disease read »
  • The Alzheimer Society of Ireland read »
  • Stroke victims recover use of weakened limbs by exercising unaffected limbs, research finds read »
  • Stroke victims too slow to call 999 read »
  • New movie - featuring older woman with a stroke read »
  • Eating tomatoes may stave off a stroke: research read »
  • Wife of Stroke Affected Husband Develops App for Rehab Speech Activities read »
  • National Stroke Week April 2012 read »
  • How can you reduce your risk of stroke? read »
  • How can you recognise the symptoms of a stroke? read »
  • What are the effects of a stroke? read »
  • What treatment is there for a stroke? read »
  • What is stroke rehabilitation? read »
  • Where can I go for more information on stroke? read »
  • What is a stroke? read »
  • What causes a stroke? read »
  • Preventing a stroke read »
  • Where can I get support after a stroke? read »
  • How do you recognise a stroke? read »
Parkinson's Disease
  • Saliva Gland Test for Parkinson's Disease? read »
  • Parkinson's Disease Research in 2012 - How Far We've Come and What Lies Ahead: read »
  • Shay Healy - How I cope with Parkinsons read »
  • Parkinson's Assocation of Ireland read »
  • Newly Diagnosed with Parkinson's Disease read »
  • Signs & Symptoms of Parkinson's read »
  • What is Parkinsons ? read »
  • Living with Parkinsons read »
  • Scientific breakthrough in study of the genetics of myopia read »
  • Family meals 'boost child fruit and vegetable intake' read »
  • 10-year-olds showing signs of heart disease read »
  • How do you know if you should keep your child off school ? read »
  • Wii games could help children overcome disabilities read »
  • Don't turn a blind eye to the dangers in your home read »
  • Twitter and Facebook 'harming children's development' read »
Multiple Sclerosis
Motor Neurone Disease
  • Motor neuron disease, and twins ! read »
  • Charity Take Me Out ! Wednesday April 18th, Dublin. Take part or come along ! read »
  • The Irish Motor Neurone Disease Association read »
  • Can I still drive even though I have MND? read »
  • What are Stem Cells? read »
  • Can MND be reversed? read »
  • What's the Difference between MND and ALS? read »
  • What Causes MND? read »
  • Just Diagnosed with MND ? read »
Brain Injury Information
  • National Epilepsy Week 15th May 2012 read »
  • Services from Headway read »
  • Managing Stress after ABI read »
  • Challenging Behaviour following an Acquired Brain Injury read »
  • Attention and Concentration after an Acquired Brain Injury read »
  • Consequences of Acquired Brain Injury read »
  • What is an acquired brain injury? read »
Men's Health
  • Irish Men treating cars better than their bodies read »
  • Charity seeks hairy Irish males read »
  • Men's mental fitness gets a workout read »
  • Testicle self-check: How it’s done read »
  • Tax Relief on the Cost of Home Care - Latest from Revenue read »
  • HCCI issue statement in response to Irish Times Article read »
  • Calls for reform of home care read »
  • Tips for Keeping Warm in this Cold Weather read »
  • Goodbye Grangegorman read »
  • Diabetes: Is sitting the new smoking? read »
  • National Centre for the Protection of Older People's seminar on Financial Abuse read »
  • Gender-bending chemicals found in tin cans read »
  • Getting hip to beating pain read »
  • Chemicals in green tea and red wine may block the brain damage caused by Alzheimer's disease read »
  • Med diet may not protect the aging brain read »
  • St Valentine is also the patron saint of epilepsy. read »
  • Sopranos star reveals how he beat pain of depression read »
  • UK "Neighbours must help elderly more" read »
  • Time for a Spring clean – declutter your home and help Age Action read »
  • Poisoning risk from poorly fitted stoves read »
  • Homeopathy is 'rubbish', says chief medical officer read »
  • Protect your House from Cold and Floods read »
  • Prescription pitfalls: why do patients not always take their medicine? read »
  • Eating strawberries all year round could prevent heart attacks read »
  • Ease Your Irritable Bowel Symptoms read »
  • Flu season read »
  • January is Lung Cancer Awareness Month read »
  • Make your money stretch until payday read »
  • Note to My Patient read »
  • Older People with Sight Loss - Living at Home read »
  • Britain's first ever hand transplant read »
  • The Garden Bird Survey read »
  • Film review: Quartet read »
  • Should I stop drinking alcohol in January? read »
  • Is It Time to Find Elder Care For Your Aging Parent? read »
  • Why I did a good deed every day read »
  • Care in the Stone Age community revealed read »
  • Sternberg Active Life Award read »
  • Chicken soup really CAN fight a cold, say scientists read »
  • Tips for Entertaining Elderly or Frail Senior Guests in Your Home read »
  • Retirement age will increase read »
  • Don't Leave a Legacy; Live One read »
  • How to Stay Warm at Home Without a Heater read »
  • Budget 2013: Elderly hit with cuts to power and phone supports read »
  • Please stay for five more minutes read »
  • What's it like to grow up with a disabled sibling? read »
  • Self-tracking: the people turning their bodies into medical labs read »
  • Meningitis Symptoms in Adults read »
  • Fears over health and loneliness of elderly this winter read »
  • Pet owners more physically fit read »
  • The Seniors Alert Scheme - What You Need To Know read »
  • The change should be in how we perceive menopause read »
  • Is exercise better for your brain than crossword puzzles? read »
  • Free bus pass 'helps keep people healthy' read »
  • App for blind and visually impaired read »
  • A few easy steps to combat your stress read »
  • Are You a "Put Upon" ? read »
  • An Ageing Population read »
  • Napping: Do's and don'ts for healthy adults read »
  • How to Prevent your First Fracture (Osteoporosis) read »
  • Migraine could be a pain in the neck read »
  • Japan's centenarian population reaches more than 50,000 read »
  • Easy to Chew Foods read »
  • A recipe to tackle malnutrition among the elderly read »
  • Calculate your BMI (Body Mass Index) read »
  • New blood test to spot breast cancer early read »
  • Never too old to get active read »
  • Gout cases double in a decade due to the affects of obesity read »
  • Ward off Winter Bugs Naturally read »
  • Is Your Home Ready for Winter ? read »
  • Is it getting harder to die in hospital ? read »
  • Cholesterol: Top 5 foods to lower your numbers read »
  • Marian Finucane speaks of the extraordinary home care her late daughter received read »
  • Healthy Habits for Children read »
  • Grannies on safari in Ireland read »
  • Free mouth cancer checks at 700 dental surgeries read »
  • Mind Moves read »
  • Give Beets a Chance read »
  • Give your body the NCT it deserves read »
  • US teen invents advanced cancer test using Google read »
  • Guide dogs for the mind to fight dementia read »
  • Dealing with Dementia read »
  • Paralympics Update : Ireland win gold and two bronze at Brands Hatch read »
  • Diabetes Ireland advises caution on 'diabetic' foods read »
  • Want to get out of hospital in record time ? Scoff yourself read »
  • Research Suggests that Regular Exercise Might Help You Live Longer read »
  • 67 year old joins TV3's Xpose fashion programme read »
  • Botox can treat problems from cerebral palsy to migraines read »
  • Irish Ladies Golf Union - District National Finals This Weekend read »
  • The Secrets of the Super Agers read »
  • How to Live to 100 - Nine Healthy Habits read »
  • Goodbye Olympics Hello Paralympics read »
  • The hardest choice: A time to care read »
  • 10 things you should never say to someone when they're sick read »
  • Share your Children read »
  • The art of healing - how art & photos can bring a touch of home read »
  • Why going to work on an egg is healthier than it used to be read »
  • Texting is now our most popular form of Communications read »
  • 'Come and live with me, Dad' read »
  • Ping Pong - never too old for gold read »
  • Nurses told to stop saying 'darling' to elderly patients because it shows 'a lack of respect' read »
  • "Mo Sco" Gridlock read »
  • Walking 'cuts breast cancer risk by 30%': read »
  • Irish Silver blogger short-listed for European IT award read »
  • Carers who provide the most intensive care often end up with health problems themselves read »
  • World Elder Abuse Awareness Day Conference - June 14th 2012 read »
  • National Carers Week June 13th -19th 2012 read »
  • Living wills Bill before Dail read »
  • With nursing home beds becoming scarce, it’s time to look at home care read »
  • Clue to Centenarians' Longevity: A Mediterranean Diet & Live at Home with your Family read »
  • Private Home Care at Bloom - Stand G17 in the Grand Pavilion read »
  • 100 years young and still going strong… thanks to her Nintendo! read »
  • 100 years young and still going strong… thanks to her Nintendo! read »
  • Well Elderly Group read »
  • Pilates: a fix for incontinence? read »
  • Sony Radio Academy Awards - Best Entertainment Programme goes to Golden Oldies read »
  • World Elder Abuse Day read »
  • 5 Regrets of Dying People read »
  • Urgently Seeking Carers Nationwide read »
  • Hand sanitiser kills virus on cruise ship read »
  • Visiting someone this year, why not bring some homemade soup and brown bread? read »
  • Revised grant amounts announced for Better Energy homes scheme read »
  • Grannies don't want a 'coffret' for Christmas read »
  • Eating fish just once a week could stave off Alzheimer's by stopping the brain from shrinking read »
  • VHI price increases 'will drive elderly out of market' read »
  • To All Our Carers read »
  • Prime Time Investigates Home Care read »
  • Stuck For Present Ideas read »
  • A Carers Story read »
  • Share A Golden Moment read »
  • What Can Your Carer Do For You read »