INTRO: You’re listening to Seize Your Adventure, the podcast that shares stories of adventure and outdoor living, with epilepsy.
JAKE (over): I was fortunate to have the epic experience of that morning to help me face the scariest moment of my life. After two days of skiing, [music fades] I arrived at the University of Colorado Neuroscience Center for brain surgery.
FRAN: Hello adventurers, Fran Turauskis here and I’m back with another adventure story for you. So you’ve just been listening to Jake Quigley, and today you’re going to be hearing a very intimate story from him. To Jake, adventure is more than just a past time, or even a passion. Adventure is a lifestyle. And this is something that Jake has built up around his epilepsy. He was diagnosed with the condition when he was 11 years old, and yet rather than being scared by the condition, the people around Jake encouraged and supported him to try adventurous things.
But having carved out this lifestyle, Jake’s seizures began to evolve when he was an adult, they started to impact on his quality of life and they became harder to accommodate. And eventually, medication wasn’t working, and Jake was left with one last option. Brain surgery.
Now in today’s episode, Jake does go into some detail about the surgery that he had. He doesn’t go into graphic detail, but if you are particularly squeamish, you might want to skip forward a bit once you hear the third bit of music.
I do also want to give you a bit of information about the terminology that’s being used. So when Jake talks about a focal point, that’s a starting point for the seizures in his brain. And when he talks about Grand Mal seizures, those are the very obvious ones where a person loses consciousness and they convulse. They are also called tonic-clonic seizures.
Jake’s story is a very important one, so I’ll hand it over to him to tell his story.
JAKE (over): It was one of those mornings you cherish in a small mountain town.
There was a foot of fresh snow outside the bedroom window. I could hear the sounds of a plough making its way up the road. In the distance, [distant dynamite boom] there was the muffled echo of dynamite as ski patrol hurled charges to trigger avalanche terrain.
I grabbed a quick bite to eat, gathered the ski gear, and met up with my brother and our friend to head out to the mountain as early as possible.
This was a last chance to ski before undergoing brain surgery.
I have had medically refractory epilepsy since I was a kid. Although there were times in my life that a new medication seemed to keep things in control, it eventually failed. For a long time, that was fine. My seizures typically happened during sleep. However, over the period of a year or so things rapidly changed. My wife Jeanie began to see an increase in my seizure activity during my sleep.
Then, the seizures began to happen during waking hours, increasingly more each week. One came while playing hockey. Then another on a hike. Then another on another hike. Then another, and another.
Close friends and colleagues at work began to notice abnormal forgetfulness. I started to notice other cognitive and psychological complications myself. An uncharacteristic increase in anxiety, memory loss and sleeplessness put a toll on my mental health.
I later learned I was suffering from what neurologists call postictal psychosis, a lingering condition after regular seizure activity. Doctors attempted various drug therapies, even a cocktail of multiple drugs, with no success. These escalating complications concerned my doctors to the point they suggested surgical intervention as my last option.
My last option. Wow.
So I was thankful for the timing of that snowstorm. It provided me with a period of calm before the very different storm that lay ahead.
When we reached the mountain, we were lucky to find ourselves at the front of the ski lift line. As soon as ski patrol radioed the lifties that all avalanche terrain was clear, up we went. The snow was falling as we rode up the mountain and it accumulated in our laps. As always, anticipation for the powder day grew.
Yet, as I continued to ride the chairlift, two thoughts kept bouncing around in my mind. Am I going to survive brain surgery? And if I do, will I recover enough to continue pursuing my outdoor passions?
At that moment, I promised myself I would.
JAKE (over): When we reached the top, we each found our line down the untouched blanket of snow. As I began my descent and let gravity take over, the fun really began.
[Sound of people skiing]
The snow flew, but this time, it went up. Up into my torso. Up on my goggles, and up over my shoulders. I had left my thoughts at the top, and I was taken over by the thrill of the descent. I was fortunate to have the epic experience of that morning to help me face the scariest moment of my life. After two days of skiing, [Music fades] I arrived at the University of Colorado Neuroscience Center for brain surgery. My wife, Jeanie, was waiting there. She had travelled nearly two thousand miles from Dartmouth Medical School, where she was studying at the time. I was put at ease by her calm demeanor. The future perfect doctor.
My father had also flown in from Florida. As a retired surgeon, he calmed me too. I had made sure to bring my ski goggles along for the hospital, and as we were waiting, we asked the surgical staff to take a fun picture of the three of us to lighten the mood.
Plus, I’d just had an amazing day of skiing. I couldn’t have been in a better state of mind.
[Plucked electric guitar music throughout – Lonely Lake by Kev Rowe ]
JAKE (over): Before I knew it, I was being wheeled into the anesthesia room.
The first procedure I had was a craniotomy. The surgeons opened my skull and laid electrode strips directly on my brain to identify where my seizures originated. It all went well and I found myself waking up in a hospital room, tethered to a mobile computer by the wires exiting fresh incisions on both sides of my head. The pain was significant, but the drugs were pretty adequate in keeping it tolerable.
I was in an epilepsy-monitoring unit, where I was stripped of my medications to actually induce a seizure so that doctors could record it and try to identify a ‘focal point’ in the brain. With friends and family by my side, we all anxiously waited for my brain to blow a gasket…
In the next room, neurologists were watching my brain’s every move. On several occasions, doctors and nurses stormed the room when an irregularity showed up on my EEG. All were false alarms.
This continued for nearly ten days, but eventually, it came. A massive seizure that generalised to a grand mal provided the doctors with the data they needed. I was an ideal candidate.
[Vibrating single trumpet note adds to music]
The doctors had identified a ‘focal point’ in the brain safe to resect, so I consented to a second procedure that would remove a significant portion of my right brain.
I will never forget the feeling in my gut – let’s just say I was a touch apprehensive and frightened – and I remember the thought that ran through my head: This is the main event. And life after that, who knows!
[Music fades into a heart monitor, which beeps four times]
JAKE: After a several-hour procedure, where surgeons removed my right temporal lobe, I awoke. I awoke.
I recognised my wife. I recognised my dad. I recognised my brothers and sisters. Most importantly, I remembered myself! The surgery was a success.
Two days later, I was discharged, and retreated to a home in the foothills of Boulder, for short-term recovery. I was still in a lot of pain but relaxing, sleeping, and having close friends and family visit me helped.
Soon enough, Jeanie and I returned to New Hampshire, where she continued with medical school and I continued recovering. It was a lengthy process. I eventually went back to work part time. But generally I laid low, read, and wrote a lot about my experience.
Although I felt very fortunate, my mind weighed heavily on the thought of having another seizure. After everything I had just gone through, the possibility that the surgery did not work would have been unnerving. I did my best to control my thoughts through practising meditation and focused breathing.
After several weeks of short walks around the block with our dog Wiley, I began venturing out into trails behind our home. There is something therapeutic about being in the woods. I spent as much time as possible outside, being very cautious in the snowy winter conditions. Toward the end of the winter I was able to enjoy a few short cross country ski tours.
Early that spring Jeanie and I discussed doing something special to celebrate both my recovery from surgery and our wedding anniversary. That summer was Jeanie’s last free window for the rest of her three years of medical school, so now was the time to plan a big adventure. The Himalayas had always been on our radar. My skull and large horseshoe-shaped scars on my head were still healing. Yet, the opportunity of spending a month independently trekking in some of the largest mountains on earth became more and more appealing. could I be physically ready in three short months for such an adventure? It would be one way to honour the promise I made to myself on that chairlift the day before my surgery.
I contacted my neurologists back in Colorado to discuss the idea. They gave their blessing.
We have some good friends who are mountaineers and they had travelled to the Pakistani and Indian Himalayas. We invited them over for dinner to discuss the region, look at maps, and consider trekking routes. The idea of exploring on such a grand level again was exciting! It made me feel like my normal self.
Later that night Jeanie and I made our decision: we would spend the next month of July trekking in the Ladahk region of the Indian Himalayas.
For training, we began hiking, trail running and mountain biking around the Vermont and New Hampshire mountains . Exploring outside, pushing my physical abilities, and feeling adrenaline in my veins again felt great. I had finally graduated to the physical phase of my healing process.
We spent several weeks prepping our gear, applying for travel visas, studying our routes, and meal planning.
JAKE (over): Before we knew it, our day of departure arrived.
Our plane descended into the steep valley of Ladakh and outside the window, we watched the Himalayas.
Jeanie and I have explored many mountainous regions across North America. As majestic and beautiful as they all are, the Himalaya range below left me in awe Large jagged spires towered high into the sky, casting shadows deep into the valleys between. It looked so raw, so intimidating.
As we descended into a tight mountain valley walled by huge spires on each side we could see the runway approaching. It couldn’t have been much longer than a few football fields. We touched down and came to a screeching halt as if landing on an aircraft carrier.
We spent a few days at a family hostel in Leh acclimating at eleven thousand feet. The town was bustling with outdoor markets, street food vendors, temples, and colorful prayer flags and wheels. While adjusting to the altitude we spent time preparing our gear for the trek. The kerosene sold by vendors on the street was far too viscous to pump through our campstove, so we resorted to filling a few bottles of fuel at the petrol station before departing town.
We bussed to the small village of Alchi on the Indus river, where we would start off on foot. The trail immediately began climbing out of the river valley. One step after another we gained elevation quickly. While ascending we had an amazing view of the Lhadak and Zanskar mountain ranges. My surgery and recovery were far from my mind. I was in my element again.
After the first few days of trekking over passes at elevations of five thousand vertical metres with forty pound packs, the pain really did set in. Or was it pleasure? I wasn’t exactly sure. I never would have imagined scaling these mountains a few months prior. Our shoulders and legs were sore from the packs and the high passes we crossed. At times, my brain would act up. Residual pain from the scarring and altitude headaches came and went.
JAKE (over): For the next two weeks we travelled by foot, spanning terrain from high desert valleys to glacial alpine passes. We encountered small Buddhist temples and Muslim mosques, and came across beautifully terraced self-sustained villages and their welcoming families. They would see us descending the trail from high above and have tea and curries prepared for us by the time we reached the valley. They insisted we spend the night before continuing on.
Each day brought a new experience with incredible scenery, significant challenge, yet always a sense of accomplishment. Jeanie and I dubbed it ‘the art of unfolding’.
[Sound of bells fade]
After nearly three weeks, we reached the Nun massif, which is the highest peak in the Indian Himalaya. Our hope was to finish our trek by reaching the advanced base camp, where alpine expedition teams stage their technical push for the summit. It was a two day journey. The first day we encountered steep rocky terrain, which made the hiking pretty sketchy. We were careful not to set off any rock slides, or make steps that would result in a very long fall. We camped and cooked dinner in a hanging valley, just below the headwall of the glacier. The second day ascended us up onto the glacier, which we navigated cautiously to avoid the deep crevasses. A steep switchback along the cliffs above the glacier took us to a small shelf in the rock. Rather than descend, we felt acclimatised enough to pitch a tent and sleep up there.
There, at nearly twenty thousand feet, I stood looking out into the expanse of glacial seracs and towering peaks. It was a clear day. Yet, I felt similarly as I did on my skis in that snowstorm, just days before brain surgery. Calm, content, excited, but also nervous, and scared. The mountains have a way of harnessing the full spectrum of human emotion. That’s what makes me fully alive. At that moment I knew I was whole again.
FRAN: That was Mind Over Mountains written and read by Jake Quigley. Jake is the executive director of a non-profit called Outdoor Mindset. Now Outdoor Mindset are a bit of a kindred organisation to Seize Your Adventure. Their mission is to unite and inspire people affected by all kinds of neurological challenges through a common passion for the outdoors. You can follow Outdoor Mindset on Facebook, Instagram and Twitter. And if you head to their website, you can actually join the Outdoor Mindset community. So membership is free and they do meet-ups in various different states across the US, and they have the Facebook group as well which is a great place for support.
Now, when he is not working, Jake can be found outside adventuring, usually with his wife, Jeanie. I did, however, manage to keep him indoors just long enough to have a phonecall a couple of weeks ago. I’ve spoken to Jake a couple of times now and he is just so open and great to talk to, we were talking for a very long time. Here is a little taste of the conversation that you’re in for in next episode:
JAKE (on Skype): I think my mindset with epilepsy when I was diagnosed at, I believe, age eleven, my father is a retired surgeon and he and my mom saw my first seizures. And I think having a physician for a father, it was never feared as a diagnosis when I was little. He never feared, my mother never feared it, therefore I never made that big of a deal out of it emotionally and never let it hinder my lifestyle. I continued on playing sports like hockey and lacrosse and would have seizures from time to time. Most of my seizures growing up were in my sleep, and it just never hindered me and outdoor activity ever since has been very much a prescribed medicine that I needed to keep that in perspective.
FRAN: So that episode is going to be out on 22nd April. In the meantime, please do head over to seizeyouradventure.com there are plenty more interviews and stories on there as well as a couple of articles. You can follow @SYAdventurers on Instagram, Facebook and Twitter to stay updated between podcasts.
And of course if you are enjoying any of the Seize Your Adventure content, please can I ask that leave a review and share what you’re enjoying. I cannot stress enough how important it is to me to get these stories out to more people, and the best way to do that is through word of mouth. So please do share it, wherever you share these things.
If you do want to support in a more financial way, there are a couple of ways you can do that as well. So you can actually buy merchandise on the website – there are some enamel mugs, there are some journals to start writing your own adventure stories, and we actually have some seizure first aid infographics as postcards as well.
That is it for today, so until next time, I’m going to say safe adventures everyone.