INTRO: You’re listening to Seize Your Adventure, the podcast that shares stories of adventure and outdoor living, with epilepsy.
[Jaunty Spanish guitar music and singing – a fiesta recorded on the Camino]
FRAN (over): On the 5th July 2017, I arrived in San Sebastian on the Northern coast of Spain. I had my boots on my feet, my bag on my back and enough medication for two months safely tucked away.
I felt ready to walk 500 miles.
[Music and singing grows louder, then guitar stops and singing fades]
FRAN (in studio): Hello Adventurers, Fran here. And thank you all for joining me today. I have to say I’m a little bit nervous about this podcast because today you’re going to be listening to my story. So is the story of my first seizure, my epilepsy diagnosis and me walking the Camino de Santiago. Listening back to the music from the Camino and writing up my story it made me realise exactly what that journey meant to me. So hopefully this podcast will give you a bit of a taste of that journey. I hope you enjoy it.
[Single plucked guitar music –Acoustic Venezuelan Cuatro by iluppai]
FRAN (over, as narration): It started as a rush of voices in my ears, then my vision went white and I was falling through fog.
The next thing I remember, I was sat on the sofa in my house. My head was pounding, I felt sick. It was another few moments before I was concerned that there was a paramedic in my house.
That was my first seizure. I was twenty-two years old and in the last year of university. There was no history of epilepsy in my family, so it was a bit of a shock.
I’d had what’s called a tonic-clonic seizure, the very dramatic ones where you fall to the floor and shake. It had only lasted for a couple of minutes, but I still have a good half an hour of my memory that disappeared into that fog. But the doctors sent me home from the hospital, and told me not to worry about it. It was a one-off and would probably never happen again.
About a year later, it happened again. This time, I was sleeping when it happened. I went to bed – without any clothes on – and I woke up with some sensors on my naked chest. There was a mask over my face, and a paramedic leaning over me. They whipped me away in an ambulance, asked me some questions, did some tests. Over the next couple of months I had various EEGs, ECGs, MRIs and all the other tests with letters.
And they didn’t find anything. They told me not to worry about it, it was so far away from the first one it will probably never happen again.
And then it happened again.
This time there were some signs that something was wrong, but I didn’t recognise them as warnings. I was having auras. Partial seizures, which, for me, was that rush of voices in my head. Auditory hallucinations created by my misfiring brain. This happened several times. But I would pause, and the voices would pass me by. So I did what any sane person would do – I ignored them.
Then, one day at work, I heard these voices, and then I lost time. I was in one room of the building, and suddenly, I was in a completely different place. I felt sick and had a headache, and I went home as quickly as I could.
When I got there, I turned to my boyfriend. “I think I’ve had a seizure”.
That evening, I had a cluster of them and I was finally diagnosed with epilepsy in April 2015, four years after my first seizure.
It was from the moment they told me I can say ‘I have epilepsy’ that I became more distanced from the phrase. I started taking medication. I take it twice every day. And I haven’t had a seizure since my first dose.
I barely noticed my one-year seizure-free mark. Maybe it’s because walking has always been my preferred mode of transport anyway, it wasn’t something I was really counting down to. But it was not long after that anniversary that the UK referendum happened. I took that with far less acceptance than my diagnosis.
After the referendum, I felt like I needed a walk to clear my head. I needed a really long, difficult walk. And with my seizures under control, I saw no reason I couldn’t do it.
[Jaunty Spanish guitar music and singing – fiesta recorded on the Camino]
FRAN (over): On the 5th July 2017, I arrived in San Sebastian on the Northern coast of Spain. I had a bag on my back, boots on my feet and enough medication for two months safely tucked away.
I felt ready to walk 500 miles.
[Music and singing grows louder, then guitar stops and singing fades]
Finding the first Albergue was like finding a speakeasy for the pious. It was housed in a school, and the entrance was guarded by three monk-like men there to take details and donations in exchange for the sello, the stamp that pilgrims collect at each hostel. When I walked in and handed over my Pilgrim Passport, with its virgin-white pages, I felt I was somehow being weighed and measured. As a godless wanderer, I can’t help but feel the men saw a frantic, solo Englishwoman, and found her wanting. When I stuttered “h-abla Inglish?” at them, the response was a Cheshire Cat smile and the slightest shake of the head. The meaning translated clearly: not here. It is not The Way.
Instead, one of them took me inside, telling me it was “tu casa” my home for the night. I choose a bed towards the edge of the room and I lay my sleeping bag out on the blue plastic mattress. I felt nervous. Nobody in that room knew that I had epilepsy. And I wasn’t sure if I should try to tell them, especially if they only spoke Spanish. So I placed my ‘in case of emergency’ tag nice and clearly on top of my bag with the Spanish ‘Tengo epilepsia’ face up. I took my tablets, I checked what my guidebook said about the next day and I fell asleep.
The next morning, I attached myself to a father and son from Madrid – their names were Fernando and Fernando. As we walked they told me to look out for the fletcha amarilla, the yellow arrows that soon enough, I could pick out from any background and I saw them my sleep. But the Fernandos were much fitter and faster than me, so they were soon far ahead.
The route took me away from the sea and up into the mountains of the Basque country. From the lizards scattering at my feet, I knew I was a while behind the next hiker. At a stream, I stopped to fill my water bottle and I was soon joined by another pilgrim, an American. It was somewhat of a relief to be able to speak to her without feeling my tongue was tied, and we exchanged our stories.
But we were soon separated again, each of us hiking our own hikes.
On my hike, there always seemed to be more ‘up’. My bag was heavy on my hips. I flopped down in the middle of the path more than once, when the soles of my feet throbbed with the pressure they were under. But I couldn’t give up. Literally. I had no idea of how to get where I needed to go except for to follow the fletcha. So I kept walking, and walking until I returned to the sea and saw the town I was staying in that night.
[Sound of a didgeridoo being played and people talking in Spanish – recorded on Camino]
FRAN (over): It was busy at the Albergue. Pilgrims were washing clothes and plastering their feet. And one of them – I had to do a double take to make sure I wasn’t hallucinating again – one of them was playing a didgeridoo. That evening, I went to dinner with an Englishman, a German and an Italian. It sounds like the start of a joke– [Didgeridoo and talk fades] –but as we ate the entire contents of the menu, we asked each other the question that would carry me all the way to Santiago. It was a question I had been asked before I left, often accompanied by an aghast face. But now, it was slightly different. Why are YOU walking the Camino? The emphasis on YOU. We were all there because we understood the power of the walking.
And I realised my answer came down to three words: Brexit and epilepsy.
I thought that was nice and simple, but there were follow up questions. And it surprised me that they were mostly about the epilepsy. What’s a seizure like? Do you take medication? What do I do if you have a seizure? And aren’t you scared?
[Music fades in underneath – folk Waltz with accordion and violin – buskers in Bilbao]
And I would answer – perhaps with my own Cheshire cat smile and shake of the head – no. Why should I be?
[Music amplifies then lowers under narration]
FRAN (over): I had to stop a lot in those first days. Most of the time, I could rest on a bench in the small villages I walked through. The locals were familiar with pilgrims. Many of them had been one. I would gratefully accept the gifts they offered. I remember the juicy peach on the second day, eating it down to the pip as the man who gave it to me mimed a warning about the mud I would find in Galicia.
[Music fades out]
My daily distance grew, and each day took me through so many varieties of landscapes. At times, I barely noticed when all I could focus on was the next step. I gained blisters on the tops of my big toes, which is a bit of a unique place to get them . The blisters throbbed, and throbbed, until my feet got so tired that that pain engulfed the throbbing.
On the harder days, I entertained myself. I didn’t listen to music– [Sound of single hiker on gravel fades in] — but an out-loud rendition of an English folk tune was once interrupted by a Buen Camino from a passing cyclist.
[Recording of FRAN singing ‘Tom Paget’ and hiking:
Well I walked all the day
‘Til I came to some rich farm house
And I knocked on the door–]
FRAN (over): I don’t think I had the energy to be embarrassed. Singing helped me, somehow. And I would arrive at albergues cansado, pero feliz – tired but happy.
[— And I said ‘kind madam
Will you pray for and remember the poor?’
FRAN (cont): After about a week, walking felt better than staying still. I felt like I belonged out there on the trail. Time took on a new meaning, with hours stretching out behind me. ‘Pilgrim time’ saw me rising at dawn and asleep not long after the sun itself. But the time between was filled with conversations with strangers, interesting trails and and a different culture and when I fell asleep each night I felt like I had lived a life in that day.
And as I was hiking, the same people would appear as we crossed paths. But there were certain people who everyone had heard of, even if they hadn’t managed to meet. Some walkers became rumours that echoed up and down the trail. Have you met the guy that was carrying the didgeridoo? What about the German guy who slept under the tree? And it was about three weeks in, when I introduced myself to someone and they said “oh you’re Francesca” that I realised I was one of those people being talked about. People seemed to find it strange that I could be out there, just me and my epilepsy. And whilst I was somewhat honoured to be alongside didgeridoo-guy and sleep-under-a-tree guy, it made me quite sad and a little bit angry. Why should it be strange that someone like me should be out there alone?
But I wasn’t the only one. One evening, I was having dinner alone, and enjoying the fact that the waiters always gave a bottle of wine for the table, even though there was only one of me that night. As I sipped the glass and filled my stomach, a middle aged man walked up to me. He stared at me. And he pointed at my chest.
And just as my defence mode was about to kick in, he said “Epilepsia?”
I looked down and realised I was wearing my Epilepsy Research top. And (laugh) it clicked.
In Portuguese, English, and lots of hand gestures, we had a conversation about epilepsy. I listened and looked and he talked about the seizures he had as a child. He was so happy to tell me that I realised how important it is to talk about it. And I knew that it was OK for us to be there.
Despite all the food I was eating, I was getting leaner. The ups and the downs became the best bits and soon enough, I reached the point where the trail splits. I could keep following the coast along the official Norte or I could veer off into the mountains of Asturias on a route called the Primitivo. It is the oldest of the Caminos, and it’s the hardest route into Santiago.
As I turned onto the Primitivo, I paused at a table set up by the lady who lives in the house on the split. I took some fruit, left her some coins and was lucky enough to meet the lady herself. I gave her a gracias, and I left with a hug and a Buen Camino, and a new word on my tongue to describe that house that had been in her family for generations: antigua. I was still like a child with Spanish, but the words were slowly finding their way.
The Primitivo brought new pilgrims to walk with, and some had just started their journey. When they were on their first day, I was on my twentieth day and they looked at me with the same eyes I used at the start, whilst walking with Fernando and Fernando. I helped them navigate the terrain, and promised them that it would get easier. One woman said to me “tu eres fuerta”. You are strong.
It is a mantra that I still repeat to myself.
[Cheerful guitar music, whooping, singing, tambourines and clapping – fiesta recorded in Santiago de Compostela]
FRAN (over): After 500 miles, my pilgrim passport was full and I walked into Santiago de Compostela. And all of my reasons for hiking, Brexit, epilepsy, they all faded away and I am just left with the memories from that walk.
[Music fades out]
I think that epilepsy, more than most chronic conditions, has a danger of making us wish our lives away. Because we need to track our seizures and because we have limitations placed on us depending on how long it has been since our last seizure, we are constantly counting down our days, weeks, months, even our years. Twenty-four hours without a seizure before I can get on a plane. One year until I can drive. Two-years until I can skydive. I would have to be ten years seizure-free and off of medication before I can fly a commercial plane.
[Music fades in underneath – it is the same folk Waltz with accordion and violin]
FRAN (over): We are always looking to the future or the past rather than being in the moment. And so much of our life is governed by that big ‘what if’. What if I have a seizure?
[Pause in speaking. Music heightens, violin speeds up]
But there was no room for that kind of thinking on the Camino, because there’s only one way to walk to Santiago.
One step at a time.
[Music slows and comes to an end]
FRAN (in studio): With nearly two months of walking, it’s obviously very difficult to sum up that journey in twenty minutes. But as much as I didn’t want to be one of those people that came back and said the Camino changed their lives – it really did change my life. It’s why I’m sat here talking to you all today.
And the reason that I chose this month to do my podcast is that it is one year since Seize Your Adventure was launched. So this month, I’m going to be doing a lot of things to celebrate that. I’m going to give you the chance now to ask me some questions, because just as I have done with all the other writers, I’m going to have an interview for myself in the next podcast. If you’d like to ask a question, either send it in an email, just writing, hello (at) seizeyouradventure.com. If you’d like to actually be on the podcast, you can record yourself. Just a voice recording or video will do as well. It will be great to hear some of you.
As you all know, money is not the reason that I do this, it is not the reason that I run the website. What I’d really love for all of you to do is share this, rate it, review it. If you’d like to contribute in a more financial way, the website does have some merchandise and there is also a button there to make a donation. So those donations will obviously go towards the RSS feed and the website costs.
Don’t forget to send those questions across to be, I can’t wait to hear from you all.
And until next time, safe adventures everyone.
#whatsportscanyoudowithepilepsy #MusicfromCamino #seizures #epilepsy #Santiago #adventurelife #endurancesports #pilgrim #outdoorliving #Basquemusic #personalchallenge #adventuresports #epilepsyawareness #hiking #adventure #camino #inspiration