Gordon Aikman: Dying has taught me how to live

Gordon Aikman who, at 29, has Motor Neurone Disease. Picture: Ian Georgeson

“AMAZING!” “Well done!” My phone beeps incessantly. It’s 8am. I wake up to a stream of messages. “Get you!” reads one. Groggy, confused, bleary eyed, I stare at my phone: “You’ve hit £5k: you need to up your target!”

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In June I wrote in Scotland on Sunday about my shock diagnosis of Motor Neurone Disease. MND is a progressive and debilitating condition that attacks the nerves and spinal cord. It is systematically weakening every muscle in my body and this will continue until I am paralysed. But my brain and thinking is likely to remain unaffected.

My aim was to raise what I could to help find a cure. I set up a JustGiving page, but could never have predicted what happened next. In one day: £20,000. My head was in a whirl. Something amazing was happening. And people – strangers – were helping. I was dying at the age of 29, but I was fighting back.

Soon friends had formed a campaign team around my kitchen table. Since then, there have been speeches, leaflets, awards, the Ice Bucket Challenge, an invitation to 10 Downing Street and a meeting with the First Minister.

Instead of prepping politicians for TV, I have been in front of the cameras telling my own story, demanding change for MND patients. What a difference from my days behind the scenes as a political press officer. Something I never expected and could never have imagined.

The fund-raising total now stands at over £100,000. The best bit: over 3,000 people have chipped in, desperate to do something to help. Together they have funded Scotland’s first dedicated MND clinical research fellow: a tangible result providing real hope for the future.

Brave? Inspiring? These words are difficult for me to interpret: I don’t see myself as either. All I did was share my experience. And writing and talking about MND has helped me process the pain, the shock, the change. It is my way of coping.

But the odds are stacked against me. Half of people with MND die within 14 months of diagnosis. I’m now seven months in and determined to prove them wrong, but the clock is ticking – and fast. I might have just celebrated my last Christmas.

A lot has changed since that first article. Life has become increasingly difficult, as I become more and more disabled. My independence is slipping away. The progressive nature of Motor Neurone Disease means that as soon as you adapt to one challenge, another is tapping you on the shoulder. It wears you down.

All the questions from doctors, nurses and lawyers are similarly wearing: Would you like to donate your brain and spine for scientific research, Mr Aikman? Have you thought about whether you want a feeding tube? When can we drop off your wheelchair? Where would you like to be when you die? Buried or cremated? Decisions you might expect to make when you have grey hair and grandchildren, not when you are 29. I should be planning my 30th birthday, not my funeral.

A year ago I would run to the gym. Six months ago I struggled walking. Now I can’t stand up on my own. My legs give way randomly. I have fallen over in the middle of the street, in a lift, in a packed hotel bar, on a train, in a car park – without help I cannot get up.

People are curious. I am regularly asked: “So, what have you done to your leg?” They don’t like the answer. Eyebrows furrow, faces drop with an awkward combination of surprise and concern. Yes, I am young.

I now struggle to walk even with a stick. But a visible sign of disability is invaluable. Before, people assumed I was drunk. Now strangers run across the street to my aid, offer cups of sugary tea or suggest a lift to A&E. They look confused when I say: “Don’t worry, it happens all the time.” But it does. At first I was terrified of being stuck in a wheelchair. But as my need for one increases, the fear lessens. Inevitability kills stigma.

I plug myself into a ventilator each night because my breathing pipes weaken as MND takes its toll. It may be uncomfortable and claustrophobic, but it will keep me breathing unaided for longer. Comedic downside: if I try and talk with the ventilator on, I sound like Darth Vader. As for my own voice, I’ve recorded it in case I lose it.

Disability is rarely dignified. I struggle with cutlery; I drop things, break things and spill things. I have been loaded on to a plane like cargo. I have had to leave restaurants through a fire escape. Those around me have become my limbs, picking up the slack where my body fails. Stairs are the enemy. Handrails, dropped kerbs, disabled spaces and accessible toilets are my friends. They make everyday life possible. Not amazing, not normal, just possible.

At least once a day I think to myself: “I’m dying: I don’t want to die.” Yet although I might be powerless to the force overtaking my body, I am in control of how I respond to it. I am more in charge of my life than ever before. That is a healthy, positive thing.

In the past seven months I have travelled more than I have in the past seven years: America, Africa, the Middle East. I have been burning through savings like never before. But why do you save? For a rainy day. And for me, right now, it is pouring.

I have spent more time with friends and family. I have shared more laughs and my relationships have taken on a new intensity. I have said the words “I love you” more in the past six months than ever before. For that I am thankful.

Things are tough for me, but it need not be the same for future generations. That is why I started my campaign. So far 12,000 emails have been sent to MSPs and MPs demanding action. And we are making real progress.

I have five aims and met with Nicola Sturgeon last month to discuss three of them. First, the specialist MND nurses who are a lifeline to me, yet only exist because of donations made to charity. Why should people have to run marathons and hold bake sales so people like me can die with dignity? These nurses should be paid for by the public purse.

Second, there are just seven of these specialist nurses, caring for over 400 MND patients across Scotland. And the number of people being diagnosed is increasing. Some patients never see a specialist nurse. By doubling the number of MND nurses, we can transform the quality of care.

Finally, it is shocking that in some parts of the country, MND patients are forced to pay for help with washing, dressing and feeding themselves. When you are on your deathbed, you should not be worrying about where you will find the money to pay for someone to help you to the bathroom. Councils charging terminally-ill patients needs to be made illegal.

Things might not be progressing quite as quickly as I had hoped but I am confident Nicola Sturgeon will deliver.

Looking ahead to next year’s general election, two issues remain. People with MND do not live long. Half die within 14 months. Yet, it can take up to seven months to process applications for benefits people need to live. We need a fast-track system that means people get the support they need when they need it.

Finally – and most importantly – we must find a cure. Motor Neurone Disease can strike any one of us. Nobody knows why. We must find the answer. That means investing in MND research like never before. I hope all political parties will include a manifesto promise to double investment in MND research. It is vital if we are to ever make progress. I am not going to be around for long, but I will fight to see these changes delivered.

People wonder how I remain so positive in the face of death. My answer: I have a lot to be thankful for. I have been very lucky, with the family I was brought up into and the full life I have lived. True, 2014 has changed it forever, but I would be lying if I said it was all bad. I have experienced immense pain, but far greater happiness. Dying has taught me how to live. We cannot change everything that happens to us, but we can change the way we experience it. I have down days, moments of intense irritation. But I take solace in the fact that today is my best day – the healthiest and most able I will now ever be. So I have to get out there and make the most of it.

I appreciate the present moment so much more. Small things: a warm hug, a stunning sunset, the cheeky grin of my baby nephew Murray. Beautiful and perfect in their own way.

My campaign for change has helped turn something immeasurably negative into a positive. I have taken the fight to the top – 10 Downing Street and Holyrood. Our politicians say they are listening. Yet MND kills fast. Our challenge for 2015 is to make sure they not only listen, but deliver.

• Gordon Aikman is a former policy and communications adviser to the Scottish Labour Party and was Director of Research for the Better Together campaign. To find out more about Gordon’s campaign visit GordonsFightback.com. To donate £5 to Gordon’s Fightback please text “MNDS85 £5” to 70070 or visit: JustGiving.com/GordonAikman

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