‘What the hell have I been doing for the last 20 years?’
Cycling The Coast of Britain And Ireland With Multiple Sclerosis
And greetings from La Piazza cafe on Brightside Lane in Sheffield. Sorry for the delay in getting this week’s email out to you — it’s an important story that simply needed more time.
For those of you new around these parts, welcome 👋 My name is David and I’m a writer, outdoor instructor and cyclist-at-large with Thighs of Steel. In this newsletter, I write stories that help you and me understand the world (and ourselves) a little better.
This week, I’m sharing the story of Lis van Lynden.
In 2022, with her fiftieth birthday on the horizon, Lis set off to cycle around the whole coast of Britain and Ireland, raising funds and awareness for people — like her — who are living with multiple sclerosis.
This is her story, but it’s less a story of cycling around Britain and Ireland and more a story of the twists and turns that bring a person through the depths of tragedy to the threshold of a marvellous adventure.
So don’t expect lengthy discussions about bottom brackets and twist shifters (phew). Instead, this is a story for everyone who has ever sat on their dreams for too long.
As Lis says:
It’s tricky when you have a lot of people die and you think you’re going to die yourself. You do go inwards, no matter how hard you try, but don’t put your life on hold — ever.
Welcome to edition 381.
‘What the hell have I been doing for the last twenty years?’
I’ve never seen rain like it. It had been rain, rain, rain, rain for the last six days — wet tent every night. I mean, it was depressing.
Lis van Lynden needed a break. She was as far from her Chiswick home as she could be while still on the island of Britain.
She couldn’t afford a hotel or a bed and breakfast, so Lis rolled into a waterlogged campsite on the northwest coast of Scotland, with stormy views of the isles of Raasay and Skye on the horizon and Britain’s greatest road climb, the infamous Bealach na Bà, at her back.
The Applecross peninsula might have been ‘one of the most beautiful areas of the entire trip’ — but gorgeous landscapes don’t keep down hypothermia.
Desperate for something more protective than her sodden canvas, Lis spotted an empty glamping pod and offered the campsite owners a tenner — all the cash she had. After a little humming and hawing, they accepted the offer and Lis moved into her humble abode.
Good thing too: there was a colossal rainstorm all night.
Miraculously, the next day was forecast clear and Lis was keen to get moving. She popped to the campsite reception to say a huge thank you — and noticed outside a fully-laden touring bike, fitted with a numberplate that read ‘Yello Velo’.
In disbelief, they leapt into a gigantic hug and gabbled fast-swapping stories of their adventures, riding that ‘pure joy’ rush of finding your exact kind of person.
‘It’s extraordinary,’ Lis says. ‘Alice was going clockwise, I was going anti clockwise, and we were both leaving almost at the same time. We would have missed each other within moments.’
Two women out there doing what they love, meeting the world.
At the age of fifty, Lis has truly rediscovered her life’s purpose and her love of adventure, a love that was suppressed for twenty years by grief.
Lis grew up an adventurer, spending summers sailing in the Mediterranean, and, in the winter, skiing in the Alps with her parents and two brothers.
In 1993, when she was twenty-one, Lis trekked up Mount Kilimanjaro with Alan Hinkes, the first British mountaineer to climb all fourteen Himalayan mountains above 8,000m.
Totally inspired, the next year Lis signed up for a mountaineering expedition with the aim of reaching the summit of Mont Blanc, Europe’s highest peak.
It had been snowing heavily for the past couple of weeks and, with Mont Blanc itself shrouded in mist, the expedition team reluctantly shifted their goal to a slightly lower summit in the Mont Blanc Massif: Gran Paradiso.
But only halfway up the mountain, Lis was exhausted, utterly drained from the constant effort, sinking into the snow, one thigh-deep step after another. She didn’t realise at the time, but she was already suffering from the ‘unreal’ exhaustion caused by her undiagnosed multiple sclerosis.
That day ended with the expedition leader yelling at Lis and taking her back down the mountain, still hours from the summit, to the refuge hut where the team were staying.
Lis was emotional, angry and embarrassed, yet, at midnight, drawing on unimaginable reserves of determination, Lis found the strength to go again and convinced one of the guides to give her another chance.
This time, with the snow lit up by starlight and the sun rising over the summit, Lis made it to the top of Europe.
‘It blew my mind,’ she remembers, and, at twenty-two years old, Lis dedicated herself to a life of adventure.
Life had other plans.
In October 1991, two years before Lis’s summit of Gran Paradiso, her seventeen-year-old younger brother and his friend had died, presumed drowned, after their dinghy got into difficulties on Loch Fyne. Exactly one year later, in October 1992, her father died of stomach cancer aged just forty-six.
The van Lynden family was deep in grief. When Lis arrived back home from the Alps, she was surging with young lust for life, for exploration, discovery and adventure. It was too much for her twice-bereaved mother, who begged Lis: ‘Please, please don't do any more mountaineering. I can’t lose anybody else. I just can’t cope with that.’
So Lis got a job as a primary school teacher and channelled her love for adventure into running an after school club for young explorers.
Over the next two decades, Lis worked at the school, fell in love, moved in with her partner, got married and, although she never had kids, the couple did buy a house together, which is almost the same thing.
After Gran Paradiso, Lis never went mountaineering again and, although she still went on the occasional more grounded expedition until her thirties, the unprocessed grief of losing her father and one of her brothers as a young woman meant her dream of living a life of adventure faded into the background.
Then, at two a.m. one cold night in March 2013, Lis was startled awake by a shooting pain down her right arm. Taking care not to wake her wife, she took a hot shower.
Then she realised: ‘Shit, I can’t feel the whole right side of my body.’
In January 2005, Lis’s fifty-eight-year-old mother had died of lung cancer. Now, only eight years later, Lis assumed the worst: a decade of smoking had caught up with her. Like mother, like daughter.
Lis went straight to her GP, who recommended an emergency MRI scan. They thought she’d had a stroke.
The MRI results came back showing a cerebrospinal fluid leak. In July 2013, a specialist confirmed her diagnosis: Lis had multiple sclerosis. She was forty-one.
Multiple sclerosis can be a frightening diagnosis: an overactive immune system mistakenly attacks the coating that protects the nerves, damaging the connection between brain and spinal cord, and causing a wide range of symptoms, including, in Lis’s case, tingling, pain and numbness down the right side of her body.
There is no cure, only pain management with medication, and quality of life interventions like meditation and, most importantly for Lis, movement.
MS is something you live with — or don’t. Lis’s wife chose the latter.
‘My marriage was not a great one,’ Lis says. ‘My wife wasn’t really supportive. She told me, “You’re gonna be in a wheelchair and I’m just not cut out to be your lifetime carer.”’
All Lis needed was for someone to put an arm around her and tell her that they’d work it out together, as a team. She never got that. The divorce came through in 2018.
Within a few months of the divorce, Lis found out her ex-wife had re-married. The day after that bombshell, Lis flew to the Tromso in the Arctic Circle, to support her cousin on an incredible human-powered expedition from Marble Arch to Svalbard, Norway.
You see: adventure runs deep in her family, deeper than any diagnosis. Lis could only resist the call for so long.
‘That experience in Svalbard opened everything up,’ Lis says. ‘It got me back to my adventuring days, back to when I was twenty. And I suddenly thought: What the hell have I been doing for the last twenty years?’
Until September 2019, Lis was not a cyclist. She knew how to ride a bike and she did technically speaking own one, rusting away in a corner of her garden. But Lis had lived in central London for three decades and, frankly, she thought cycling in the city was ‘so bloody dangerous’.
Everything changed one fateful day in September 2019: Lis was running late for a travel event at the Corinthian Hotel. Instead of messaging to say she’d be late, Lis wondered to herself: ‘If I cycle really fast, could I get there before the Tube? Let’s try it!’
There are over 130,000 people living with MS in the UK. You might be more likely to associate the disease with wheelchairs than with bicycles, but Lis is one of thousands whose lower body mobility is good enough that cycling gives her ‘absolutely no pain whatsoever’.
In fact, Lis was about to discover that cycling could change her life forever.
She arrived at the hotel drenched in sweat, five minutes early, having cycled faster than she ever thought she could. Someone pointed out: ‘Oh, you’re the only cyclist here!’ Instead of confessing that it was her first time cycling to work, Lis smartly replied: ‘Well, we need to change that — we should all be cycling!’
And, from that moment, she was.
In early 2020, Lis read One Man And His Bike, Mike Carter’s tale of cycling around Britain. Then she read it again, cover to cover, totally entranced.
‘At the end of that second reading, I suddenly thought that maybe this is my adventure,’ Lis remembers. ‘I never have one hundred percent conviction that I can do something, but I had it then. I knew that I could do it.’
With her brother egging her on, Lis planned her adventure: she would cycle around Britain that very summer. That very Covid summer of 2020. Just like Alice Baddeley, Lis found herself postponing the trip, but the delay only served to cement her determination.
That autumn, Lis started following the adventures of Vedangi Kulkani, the youngest woman to cycle around the world. As it happened, Vedangi was running a competition to win a bunch of cycle touring goodies, including a blueprint on how to plan an expedition and a year’s subscription to Komoot, a tour mapping app.
Much to her surprise, Lis won. Reading Mike Carter’s book, winning Vedangi Kulkani’s competition — these were all signs to Lis that she was on the right path.
The final push was attending the Covid-struck online edition of the Kendal Mountain Film Festival and watching a film called Gitonga, about a man pursuing his dream to become the first Kenyan to climb Mount Everest.
A conversation with Gitonga producer Joe Bunyan underlined the importance of listening to the nagging voice in her head: it would never shut up, not her whole life, not until she finally got on her bike.
‘I have to pursue this,’ Lis told herself. ‘I have to do this cycle adventure, even though I’m shitting myself with fear.’
Finally something like normality descended on the country: 2022 would be her year. All she had to do was rent out her Chiswick flat for a year — how hard could that be?
The first estate agent got cold feet (literally?) when a leak sprang up in the corner of the living room. Without the ready cash to fix the leak, Lis simply found a new estate agent, who soon phoned back with good news:
ESTATE AGENT: Lis, you’ve got a contract!
EA: The thing is, it’s not for one year.
L: What do you mean it’s not for one year?
EA: Well, erm, it’s for three years.
L: Three years?! What am I going to do for three years?
EA: Well, you know how you’re cycling around the coast of Britain — couldn’t you just do another trip?
L: No, absolutely not. Sorry, I’m not being dictated to go and do it for three years. Absolutely not. That’s lovely for you because you’ve now got three years’ worth of monthly rental income. What about me? You know, where’s my home?
L: Look, I tell you what, give me twenty-four hours and I’ll come back to you.
That night, Lis thought long and hard about the offer, turning over the different scenarios in her mind, balancing the allure of the adventure of a lifetime against the instability of three years of placelessness.
Should she stay or should she go?
The next morning Lis phoned her biggest supporter, her brother, to chat through her decision.
‘Sis,’ he said, ‘there’s no point us chatting about this: you’re going to say no anyway.’
‘Well, actually,’ Lis replied, ‘I knew you would tell me to say no, so I rang them up before speaking to you — and I said yes.’
Her brother couldn’t believe what she’d done. Halfway into her three year exile, I think Lis can’t quite believe it either. ‘I still think it was the best decision,’ she says, ‘but it’s quite a hard one, that.’
At the beginning of this email, I promised you a story that would bring you from the depths of tragedy to the threshold of a marvellous adventure. With her three-year flat contract signed, sealed, delivered, Lis had not so much stepped over the threshold, but flung herself down an entire flight of stairs.
Not that it means she felt well prepared. Her only training consisted of the odd lap of Richmond Park, without the inconvenient burden of any of the camping, cooking and living kit she’d need for the next unknown months in the saddle.
The night before she left, her brother rang to wish her good luck.
‘He said, “You must be excited; nervous, but really excited,”’ Lis remembers. ‘And I said, “Actually, I’m really pissed off. I cannot fit a single thing into my bags.” That’s how I started: with no knowledge whatsoever — or with just enough knowledge to go.’
And, on the morning of May 7 2022, go she very much did.
Spoiler alert: on Saturday 10 December, after six months of adventure, Lis completed a lap of Britain and arrived back in Chiswick.
Not that everything went to plan, mind.
Only an hour after being waved off by a party of friends and well-wishers from The Multiple Sclerosis Society, Lis’s Garmin GPS ran out of battery.
Scrabbling around in her bags for any kind of a charger, Lis realised that she’d left them all on her kitchen table. ‘I really didn’t know what I was doing,’ she says, ‘not at all.’
While she was wondering what to do without her route maps, Lis noticed a man standing by the side of the road, smiling at her. Lis struck up a conversation and found out that, by chance, he was there to pick up his daughter, who’d been at the farewell party for an amazing woman who — would you believe it — was going to cycle around the whole coast of Britain.
Slyly, Lis asked him, ‘And how amazing was this woman, exactly?’ The man looked confused and then laughed: ‘Wait, it’s you, isn’t it!’
After she’d explained her current predicament with the out-of-battery GPS, the man offered Lis his own charger, right there and then. Being a well-trained, self-sufficient Londoner, Lis couldn’t possibly accept, but the man insisted. Lis was bowled over.
One of the first things that struck me about Lis when I asked her about cycling around Britain was that she immediately said, ‘There are so many people I need to thank.’
Before she left, Lis knew that she was going to meet lots of generous and supportive people on her journey — ‘Mike Carter bangs on about it at length,’ she says — but she could never imagine exactly how (or even why) they would help her. And she certainly never dreamt she’d get such above-and-beyond support so soon into her journey.
Since time immemorial, the people of Greece have lived by a moral code of philoxenia: generosity towards strangers, guests, gods, gods in disguise, foreigners, travellers and friends of friends of cousins of friends.
I’ve written before about my own experiences of philoxenia while touring (here and here and here) and, as Lis quickly discovered, it’s while moving through this land that we so often encounter the best of the British people and our shared human capacity for the kindness of strangers towards strangers.
A ‘solo’ and ‘unsupported’ ride around Britain is anything but.
‘The whole trip was all about people,’ Lis says. ‘If there were no people, I would have struggled. It’s the people I met that made it so interesting.’
Like that time when a dog peed on Lis’s tent and the dog’s owner was so mortified that he not only cleaned up, but made Lis a bacon sandwich for breakfast.
Or that time when Lis was offered a cup of tea by a couple in Wick and, before she could say ‘two sugars’, found herself and her Multiple Sclerosis Society fundraiser splashed all over the local news.
The same couple stayed in touch with Lis and, a couple of months later, on her fiftieth birthday, she got a message from them: ‘We’ve paid for you to stay in a hotel for the night. Happy birthday!’
But that was thousands of miles into the ride, full of confidence, with the sun on her face and wind at her back. On her first day, leaving London, Lis did sixty-eight miles, along the same route that Mike Carter took.
Her summary? ‘It was hell — it nearly killed me.’
Day one was something of a wake-up call for Lis: sixty-eight miles fully loaded without much training is a huge distance. Especially crawling through the sprawl of East London.
Within a week of departure, Lis ripped up her carefully prepared blueprint of the ride and her plan to cycle at least fifty miles a day. In fairness, the blueprint had done its job: it’d got her out the door. But now she was on the bike, Lis re-committed herself to enjoying the adventure and that meant doing whatever she felt like.
‘I could take three years to get around the coast of Great Britain!’ she says. ‘So why am I counting the miles?’
The first few days and weeks of any long bike tour, especially your first one, represent a steep learning-about-yourself curve. Lis made three radical adjustments: she stopped counting miles (‘I totally relaxed; it was the most amazing feeling’); she started wild camping (‘that’s when I truly loved it’) and she threw away her multiple sclerosis medication.
In June 2022, a month or so into the ride, Lis chucked her boxes of medication into the bin. Nearly eighteen months later, she’s still off the meds.
I’m going to put the next paragraph in bold type to emphasise how important the following caveat is to Lis:
Although she says that coming off medication has ‘done me the world of good’, Lis is very clear that she is not a medical miracle and she would not recommend that anyone, particularly those recently diagnosed, stop taking their pills.
‘I’m not an advocate for getting off your medications,’ Lis says. ‘Medication made me feel so much better: they kept everything really stable. I’ve lived with MS for 10 years and I know what it feels like when I have a relapse. I absolutely wouldn’t hesitate to go back on them.’
So what happened in June 2022 to trigger such a radical change?
MS medication is powerful stuff and Lis had a pretty strict schedule, taking one pill in the morning and one pill in the evening. Missing doses could be hard on a body and mind accustomed to regular pharmaceutical support. The problem was that bike touring doesn’t play nicely with strict schedules.
After accidentally skipping five days, Lis decided she was better off either all-in or all-out. She took a risk and threw her meds away. She was ‘dumbfounded’ by what happened next.
‘I realised that the pills had been blunting a lot of sensation around my body,’ she says. ‘When I came off the pills, I was dumbfounded to feel sensation coming back in different parts of my body.’
Another bold paragraph:
This is not the story of an inspirational maverick thumbing her nose at conventional medicine. ‘I’m still being monitored,’ Lis says. ‘I have a yearly MRI scan, with online meetings with a neurologist, and I can always go back on medication if needed.’
It is a story of a woman getting into her body and looking after herself. ‘Before the bike ride, I didn’t listen to my body,’ Lis says. ‘Nobody knows what will happen, but I feel strongly that if I carry on with the cycling, I’ll be fine.’
Lis comes from a ‘very stiff upper lip’ family that didn’t talk openly about their grief. That silence and suppression might have cost Lis her health. She now draws a direct correlation between her family tragedies and, decades later, her burnout and subsequent illness.
Getting back into her body by cycling really bloody far has not only transformed Lis’s health and helped her rediscover her life’s purpose, but the ride has also helped her process her grief.
About twelve miles short of John O’Groats and the northernmost tip of Britain, Lis found herself getting ‘quite emotional’ about cycling almost the whole way up the east coast, a journey of a thousand miles or more.
Here she was: living the life of adventure of which she’d always dreamed. Finally.
‘I suddenly felt this big warm hand on my back,’ Lis says, ‘almost telling me, “It’s okay, you’re gonna be fine.” I actually turned around and looked back to see if there was anyone there.’
There wasn’t, of course. But her mind instantly went to her younger brother, father and mother.
‘They were all very young when they died and I suddenly thought, gosh, all three of them are with me — they have to be because that’s the strangest sensation I’ve ever had.’
Her whole family, this big warm hand, were reunited, cheering her on, celebrating her return: her return to adventure, her return to joy.
The final word is with Lis:
‘It’s tricky when you have a lot of people die and you think you’re going to die yourself,’ Lis says. ‘You do go inwards, no matter how hard you try, but find little things to keep you moving forward.’
‘If you get diagnosed with something like MS, grab anything you can to move yourself forward rather than standing still. Find out how you want to live and how you want to spend your days. Why not be happy?
‘If you've got a really big idea in your head, yes, it will scare you. It will scare the living daylights out of you and maybe you’ll not do it for some time because it scares you so much.
‘But if you’re still dreaming about it three months down the line, for God’s sake, get to the start line. Conquer your fear because, actually, you’re always going to have that fear.
‘Don’t put your life on hold — ever.’
Huge thanks to Lis for taking the time to tell me her story over two fascinating phone interviews. This is, of course, only a small part of the tale: Lis is writing a book and I can’t wait to read it.
Until then, follow Lis van Lynden’s adventures on Instagram @coddiwomple2wander and please consider donating to her Multiple Sclerosis Society fundraiser.
If you enjoyed this post, please remember that I still have NO WAY OF KNOWING 😱 unless you like, comment, reply or share. So please do all of those things.
Let’s get Lis’s inspirational story out there.
Thanks for your eyeballs, thanks for your support.