Author with severe disease makes bucket list to visit 30 countries before 30

Bucket lists are a common thing nowadays, but rarely is the person making it so young.

Bethany Meloche, 29, is aiming to visit 30 countries before she turns 30, as part of a bucket list she made after being diagnosed with Charcot-Marie-Tooth disease (CMT) when she was 12.

The genetic disease means Bethany’s mobility is reduced – she was using a wheelchair at 15 and unable to stand by 18 – but she’s determined to reach her travel goals.

She hasn’t let CMT dominate her life at all, and met her husband, Josh, 31, a software engineer, through online dating, had surgery enabling her to walk with sticks, and even moved continents from Michigan, USA to Bayswater, west London.

She says: ‘It is easy to look at someone with a progressive disease like me and say, “Well, there’s not much we can do.”

‘But I decided a long time ago I didn’t want CMT to define me.’

The author of a book about living with her condition – How Should A Body Be? – Bethany cites childhood memories of seeing her grandmother wearing leg braces, which she now knows was because she, too, had CMT.

‘I remember when I was l very young watching my Grandma May put on these giant, clunky leg braces,’ she said.

‘At that age, I just thought, that’s what grandmas did – they wore big Grandma shoes.’

At the time, no one mentioned CMT to Bethany, despite her always having an imbalanced gait when she walked, which indicated she had the condition – as they wanted to protect her.

She said: ‘I was very close to Grandma May, who passed away in 2010, following a stroke, and I think she was very close to me because she saw from my gait I’d inherited the condition.

‘But I wasn’t diagnosed until I was 12. I’d been tripping over, then I experienced what felt like a bolt of lightning shoot down my arm when I was making a clay sculpture, so I looked up the symptoms.

‘It was a classic symptom of CMT. I worked it out for myself and asked my mum to take me to see a neurologist.’

An incurable and progressive condition, CMT does not typically shorten life expectancy, but those with a severe form like Bethany see their mobility being extremely compromised.

Determined not to let it ruin her life, when Bethany’s feet became deformed because of the nerve damage, she had multiple painful operations, followed by long stints of rehab, meaning that she can now stand and walk, albeit with the support of sticks.

Marrying in 2015 and moving to London for Josh’s work in 2016, the couple only planned to stay for a few years.

But now they love it so much they have applied to remain indefinitely, saying the city makes a fabulous base for travelling around Europe when pandemic restrictions are not in place.

It has been particularly helpful for Bethany, who studied nutritional science at university, to fulfil her bucket list wish to travel to 30 countries before she turns 30.

She said: ‘I have now been to 27 countries. I’ve had gelato in Venice and been to the top of Machu Picchu. I’ve had roadside honey in Romania and visited the Taj Mahal and I am now writing my second book which is called Travelling Slowly.’

While her positive outlook is admirable, Bethany does admit that living with CMT can be very tough.

She said: ‘I would never say these symptoms are not devastating, they are.

‘My balance is awful. Even a gust of wind will knock me down, but what I understand now is that while people may give me the facts, they don’t give me the whole story, because that’s up to me.

‘For example, I have an annual check-up with the specialist, because this is a progressive disease, and it always includes a painful test that measures how fast the nerve signals are travelling in my body.

‘At my last check-up, the doctor didn’t do that test and when I asked if she had forgotten she just said there was no point as my nerves were dead the last time.

‘That kind of news can leave you feeling depressed for weeks and make you want to stay on the couch, but I’ve become really sceptical about giving anyone else any control about what I can or can’t do.’

As well as travelling and writing, Bethany has done multiple long-distance walks, including one that was a distance of 50 miles.

She has also been meeting sufferers of similar conditions as part of a campaign with UK’s Muscular Dystrophy charity (MDUK).

‘It has been very liberating and empowering talking to other people with similar conditions. It has made me feel even more control of my life,’ she said.

As well as supporting the campaign, finishing her bucket list and pursuing her career as an author, Bethany is keen to start a family with Josh.

The couple will be exploring their options and investigating medical interventions that can help prevent the CMT gene from being passed on to a baby.

‘I am able to have children and I want a baby very badly, but the people closest to me, because they love me, have told me the thought of me being pregnant terrifies them,’ she said.

‘I know they only say this because they care about me, but I have managed long-distance walks when even crossing the street is difficult, so I know that if we decide to start a family, I can rise to this enormous challenge too.’

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