By Jeremy Skidmore
The most striking thing about chatting to Amanda Norey on a video call is that you really wouldn’t know anything had changed.
At 55, she looks fantastic and no different from the days when she was head of trade sales at Kuoni over a decade ago, and better known as Amanda Darrington.
For our hour-and-a-half together she is laughing and joking in in the same way that I remember in the past. She talks positively about her situation, without a hint of self-pity.
“Well today is a good day, because I’ve taken delivery of my new power wheelchair – it’s got a joystick and can turn on a sixpence,” she said.
“I can’t wait to try it outside but I’m not using it in my flat because that would be giving in.”
Amanda was always clumsy as a child, but just put it down to having ‘wonky genes’ rather than anything more serious, even though her mother, now 75, has lived with multiple sclerosis (MS) since she was 29.
“Yeah, we didn’t really think it was any more serious than me being a bit clumsy. I broke my arm three times, tripping up and falling over. My poor Mum thought that social services might get involved to ensure I wasn’t being mis-treated.”
As an adult, her condition gradually worsened until her legs simply refused to do what was required of them. Just walking became a huge challenge.
In 2018, a hospital told her that she had lesions on her brain and cervical spine, which showed she was suffering from MS. She was working as the UK and Ireland sales director for Royal Caribbean and didn’t handle it well.
“Getting the diagnosis was the hardest time. I was embarrassed and just lied to everyone at work. People knew about my mother and that I had gone for a check-up, and I just came back, walked into a board meeting and said, ‘it’s fine, I don’t have MS!’ And then I had to live the lie.
“The consultant told me not to google anything about MS, but of course that’s the first thing you do and then it really hits you.
“It was around the time of the Travel Weekly Globe Awards, and I was due to come on to the stage with the DJ Trevor Nelson and there were steps that I had to walk up and down. I told Travel Weekly that I had a bad back and couldn’t use the steps, so they had a young man escort me up and down.
“After that I spiralled downhill, lost focus at work and knew I had to leave the job. Straight after, I went on a boating holiday on the Norfolk Broads with my then partner and spent the whole week crying and feeling sorry for myself.
“Then I decided, right, you’ve got to pull your big girl pants up. I’d just ruined one holiday, and I could either carry on like this or shape up. So that was it. I had four months of self-destruct and since then I’ve been back to my old self.
“When you are faced with an illness that you can’t control and there’s no light at the end of the tunnel because there’s no medication or treatment, you can either let it absorb you or decide that you are going to live and enjoy life. I chose the latter.
“Also, my Mum has such a fighting attitude that she wouldn’t let me give up.”
Looking like a drunk
Amanda carried on hiding her condition for several years. Her stories about attending job interviews are heartbreaking but, because of the way she tells them, we end up laughing at her recollections.
“Honestly, it was cringeworthy at one interview, because they said they were environmentally friendly, so didn’t use the lift and preferred everyone to use the stairs. I made a huge effort to pull myself up, but I thought, I can’t go down, I’ll just literally fall all the way.
“After the interview, I needed to make up an excuse, so I said to the director that I had to get the lift down because I’m a bit scared of heights. Scared of heights on the stairs! That must have sounded ridiculous. Needless to say, I didn’t get the job.
“Another time, I got a cab to where I needed to go, wearing my trainers. I went to a coffee shop and put my kitten heels on for the interview. When I got there, they took me up some sheer wrought iron stairs with holes in. Then I had to walk along the corridor, but by then my balance was completely gone, and I was staggering around like an old drunk.”
Her symptoms, which can make it appear as though she has had one too many, were the inspiration behind her online journal msdrunk.co.uk, a humorous account of living with MS.
“Some people might read it to get a better understanding of the condition but really, I do it for my own sanity. I enjoy writing and it’s a very British thing to laugh at ourselves. It helps me mentally.”
Amanda maintained her secret during three years at the ill-fated cruise company Tradewind Voyages, even successfully navigating an interview on a boat. Her position was meant to be an office job but when Covid struck and she was forced to work from home, it became easier to keep up the pretence.
“This sounds awful, but Covid did me a big favour because we all had to work from home. I’m perfectly fit and able from my waist up – you don’t see me trying to walk on a zoom!”
Amanda now works as a consultant for Gail Kenny Executive Recruitment (GKER) and has contracts with other companies.
“Gail [Kenny, GKER co-founder and managing director] approached me after hearing my story and when I had an interview with Ian [Brooks, partner and co-founder] for a role it was the first time I hadn’t had to hide the truth.”
Amanda does not want a full-time role again but would be interested in a permanent position, perhaps working up to four days a week. However, she cheerfully admits this is unlikely to happen.
“Let’s get real, I can’t drive because my daughter stopped me after she thought I was going to kill her.
“People look at you and they assume that you are likely to need time off, even though I am very rarely sick, and that there will be a limit to what you can do. I’ve got great experience, but I’d need to have such a compelling reason why people should hire me.
“The travel industry is very social and likes doing work face-to-face. If a company wanted me to attend an event, I could do it, but they’d need to send a car for me, and I’d need someone to help me in and out of a wheelchair. It’s such a faff.
“I did have one interview that went well and at the end I told them I had MS, but it wouldn't limit me in the job. That was a mistake as I never heard from them again. Companies play the diversity card but I’m not sure that really plays out in practice.”
Daily struggles
Amanda has two daughters, Ella 20, and Lola 23, neither of whom have any symptoms of MS or any of the apparent clumsiness that has afflicted their mother. Ella lives with Amanda in a flat in Cambridge and sometimes acts as her chauffeur, but Amanda is staunchly independent and adamant that her daughter lives her own life and does not become her carer.
The daily routine for Amanda sounds extremely tough – getting from bed to bath and then office can take three hours. But she talks about it as if anyone could do it.
“I do have some good gadgets. I can’t lift my legs high enough to get into a shower, so I’ve purchased a bath lift, which is remote control. I get up at 6 and can be at my desk by 9.
“I have a bespoke stand-up machine which I use for 10-15 minutes each day with a wooden and metal frame, which is good for posture, and it stretches my hamstring.
“Walking is obviously a struggle and I’m lucky if I can do 500 steps a day, but I want to keep fit, so I have a personal trainer three times a week, with a programme designed for me which includes a combination of weight training and stretching.”
Amanda’s flat is on the second floor, so leaving the apartment takes a huge effort.
“I’ve got a lovely terrace and summer is coming, so that will be great, particularly if I can get a ramp to get over the step, but I have a pact with Ella that I will go out at least once a month.
“It’s not a quick process. I haul my legs one by one up and down the stairs. I might have to move at some stage, perhaps to a bungalow, but not yet.”
Single life
Amanda says she’s lucky to have a close circle of family and friends, but knows it is easy to lose touch with work colleagues when you are not on the circuit of attending events and dinners.
“There have been a couple of people who have kept in touch with me, but if you’re out of sight, you’re out of mind. I get it, people have their own lives to get on with.
“I knew what it would be like because when you go on maternity leave, which I did twice, you literally don’t hear from anyone. So, when I went into a bit of exile, it felt like that period all over again.
“Coming out with the journal has helped raise my profile a bit and it’s also a way of letting people know my condition.
“To be honest, I haven’t really engaged with people in a similar condition or joined any MS groups. I can’t be sucked into any negativity because I need to stay positive. Those forums may be very helpful for some, but I just don’t think they are for me.”
Amanda divorced many years ago and has got used to being single.
“I don’t want to give up on the idea of love, but really, where am I going to meet anyone? My sister, who I love dearly and also uses humour to deal with situations, said, ‘I know Amanda, we’ll get you on that programme, The Undateables’. Thanks a lot!”
Travelling again
Single or not, Amanda is resolutely upbeat about the future and is planning a trip to Majorca in September with her cousin.
“I do miss travelling. I don’t think I’ve been on an aeroplane since 2018. But my new power chair means I could do it and my cousin is up for it.
“The Spanish Tourist Board is trying to make Spain accessible for all, so let’s test out the theory.
“I’m a little bit nervous because my new wheelchair costs a lot of money and I’m going to have to put it in the hold. If I get there and it’s broken, then I’m stuffed as I don’t think you can pick one up at duty free. Also, I’m a bit worried that I might just be stuck in the seat on the flight. But I think we’re going to go for it.”
On the day we speak, she is excited about giving the new wheelchair its first outing.
“I’m going out with my daughter, her boyfriend and my ex-boyfriend, who I get on very well with. We’re going for a curry and I’m going to have a glass of wine.”
In typical Amanda style, she chuckles when delivering her final line.
“The good thing is, I don’t think you can be done for being over the limit in charge of a power wheelchair.”
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