Tuesday, February 9
Every day, every few hours, from now until I die, I will see a carer. They will wash, dry, dress, feed me; help me live what is left of my life.
Council funding rarely gets the juices flowing, but this year is different. Heart racing, I am beaming from ear to ear. I cannot believe what I read: “A living wage for every social care worker in Scotland.” For too long, care workers have been undervalued and underpaid. A living wage will transform the lives of those who deliver and receive care. It will attract more people into the profession — helping meet demand and cut waiting times — and retain experienced care workers, raising standards.
This is far and away the biggest and proudest achievement of my campaign to date. This stupid grin is going nowhere fast.
Wednesday, February 10
It is a glorious sunny day, bright, crisp and clear. Where else to spend it, but at my local hospice? It’s not somewhere you expect to be at 30 years old, but that is motor neurone disease for you. As I sit in the cafe, sipping tea through a straw, something catches my eye. “Happy 90th”, “Happy 95th”, “Happy 100th birthday” read the cards in large foil writing. I laugh to myself. For me, 100 days would be good going.
Friday, February 12
I lose my rag. After a week of lengthy calls to Air France, and just days before we are due to set off on our honeymoon to Paris, the airline tells me it can’t take my wheelchair. It’s too big, apparently. To me, that’s like saying: “Sorry, sir, you can’t take your legs on this flight.” With no strength in my arms, no powerchair means being shoved around in a manual chair: shoved and parked, shoved and parked. No freedom, no independence. It quickly does your head in. Just 48 hours before our departure, we book with easyJet, a 21st-century airline. Honeymoon is go. As for Air France, its website says it is “eager to hear any suggestions you may have”. Here’s one: if you can’t take a wheelchair, say so — and say so early. And while you are at it, scrap the rip-off charges to your 0871 reduced mobility helpline that is cashing in on customers with a disability.
Monday, February 15
A honeymoon is usually something enjoyed by two people. For us, it had to be three. To be an enjoyable trip for my husband Joe, I need a carer. Our travelling trio set off. The special assistance team at Edinburgh airport is top-notch as usual.
Wednesday, February 17
‘Comedy stars shine to raise funds for MND,’ reads the headline. I might be munching a croissant 700 miles away, but the campaign goes on. For the second year Glasgow International Comedy Festival will host a charity gig for Gordon’s Fightback. Fred MacAulay, Larry Dean, Susie McCabe, Gary Little, Mark Nelson, Micky Bartlett and Scott Agnew are all confirmed. Last year was a sell-out, raising over £25,000. With your help, I hope we can raise even more this year — we’re so close to the £500,000 target.
Friday, February 19
After a week of exploring, eating and drinking our way around Paris, our honeymoon draws to a close. Highlights include a delicious rooftop dinner overlooking the Eiffel Tower twinkling in the night sky; stumbling across the most beautiful courtyard garden; and eating some of the best steak tartare I have ever tasted.
Was it all straightforward? No, of course not. Things go wrong. Crossing a road, miles from our hotel, my wheelchair battery died. Travelling with a wheelchair can be difficult, but rarely impossible. With so many additional, mundane, things that need to be planned I understand why many are put off. The temptation is to stay at home and stick to what you know. Yet a terminal diagnosis means there’s a ticking clock above my head, I’ve got to make the most of every day.
Saturday, February 20
It’s a cold, wet and windy afternoon. Assembled outside Holyrood are over 100 disability campaigners. We pose for photos as it is announced a £200,000 fund is to be established to tackle the massive under-representation of disabled people in politics. A healthy democracy means a parliament that reflects its people — and being disabled, as one in five are, is expensive. This cash will help cover some of the extra costs, such as accessible transport or communications support, faced by disabled people who wish to stand for selection or election. It’s a big victory for the One in Five campaign.
Monday, February 22
Air France calls. It has, at last, seen sense. It apologises, agrees to refund our tickets, pays my phone bill, meets costs of our alternative flights and — upon my admittedly cheeky request — pledges to donate to my campaign. Hats off to it. Of course, saying sorry for a mistake is far easier than changing how a multinational company looks after vulnerable customers.
Gordon Aikman is a Motor Neurone Disease patient, campaigner and former Labour Party strategist.
Stand Up Against MND is at King’s Theatre, Glasgow, on March 14, 7.30pm.
To donate to the campaign to fund research into a cure for MND, text MNDS85 £5 to 70070 or visit gordonsfightback.com
This article first appeared in The Sunday Times on 28 February 2016.