Lori Schneider: Empowerment Through Adventure
Interview with Lori Schneider by Phil Bolsta
Watch Lori Schneider’s interview:
Hey, Phil, thank you for inviting me again. It's so nice to chat with you again.
Indeed it is. Allow me to introduce you. On May 23, 2009, 53-year-old Lori Schneider became the first person in the world with MS to summit Mount Everest. Lori is also the first person with MS to complete the Seven Summits by scaling the highest peak on each continent.
But she didn't stop there. She formed a company called Empowerment Through Adventure, which offers organized adventure trips for people of all abilities, including those with MS and Parkinson's disease. Lori has led a Leap of Faith expedition to the top of Mount Kilimanjaro with 13 other women and men with multiple sclerosis and Parkinson's disease. And in 2017 she brought 45 people to Canada for customized helicopter-assisted-hiking in the remote Bugaboo Mountains. She'll be bringing another group back to the Bugaboos in July of this year. If you're interested in joining this expedition, which is for people of all abilities, you'll find details at the bottom of this interview.
So Lori, tell us about the day that everything changed, the day that you woke up numb from multiple sclerosis.
I still remember that day so well, Phil. It was a real defining moment in my life. I was getting ready to get up in the morning, get out of bed, and get on a treadmill to start my exercising, because secretly I was training to climb another mountain… and swung my legs out of bed and I was numb on one entire side of my body, as if someone had drawn a line. One side was numb and the other wasn't. I called the doctor and I explained what happened and they said, "Well, if it's still like that tomorrow, come into the emergency room and we'll check you out."
So I tried not to worry. Next morning, the whole day and following morning I was still numb. And my vision was really blurry. I was having trouble with motor activities. I just felt out of sorts. I went in and eventually they told me that I had multiple sclerosis. And when they told me that, fear set in terribly, and I ran away from my whole life. I had been a teacher for 20 years, I'd been married for 22 years... I sold my house, I left everything behind in fear that I wouldn't be able to walk soon.
Wow. It's ironic that you dealt with your fear of not being able to literally walk by figuratively running, as in running away from the life you'd been living. How long did that process take to recreate your whole life?
Really for me, the fear set in over maybe two or three months of getting that diagnosis. And like I said, I had been kind of secretly training to do another mountain climb. And I didn't want to tell anybody that the doctors had just told me that possibly in a year I'd be in a wheelchair. And so I kept training, and I was going to be climbing Mount Aconcagua, the highest peak in South America, which is close to 23,000 feet. And I was going to do it with my father, so I didn't even tell my family about the diagnosis for about six months. And then when I finally got the courage to say those two letters, MS, out loud to my family, I said that I had to go and prove to myself that I still had some control over my physical life.
So my dad and I flew to South America, almost a year after the time that I had been diagnosed, and I'd been working out and training and trying to keep up my strength as best I could. And nearly a year to the day of that first episode when I woke up numb was the day I stood on top of Aconcagua. And I told myself, "If you're strong enough to climb a mountain like Aconcagua, you're strong enough to accept the fact that you have multiple sclerosis and stop being ashamed of it and stop being embarrassed and stop hiding it. So that mountain changed my life and it changed my attitude about my MS and it really got me over the fear of what would become of me.
Wow. I am just amazed by your adventurous, indomitable spirit. What was your experience with mountain climbing before that diagnosis and what was your inspiration to climb mountains in the first place?
Well, for me it started back when I was in high school. My dad was pretty athletic, he was a runner, and he used to invite me to run with him before I'd go to school in the morning. And it lasted off and on for a couple of years. But I remember one day he came home and he said, "Someday I want to go to Africa and climb Mount Kilimanjaro." I love my dad dearly, and I said, "Someday I'll go with you."
Lori and her father Neal on the summit of Mount
Kilimanjaro in 1993
Well, 20 years later I was on a two-year backpacking trip around the world. I had taken a leave of absence from my job, and my dad and I decided to meet in Africa. And if we were to make it to the top of Kilimanjaro, we were going to summit on my dad's 61st birthday. So we trained really hard for a year, met up in Africa, and we in fact did summit on my dad's 61st birthday. So he was really my inspiration to start.
But then, with dad a couple of years later, he kept talking about maybe we should do another one. And it's funny, you know how something is so difficult that you kind of block it out of your mind? Well, our first attempt at Kilimanjaro we almost didn't make it. We were so exhausted. We joined arm in arm and we literally dragged each other to the summit. So it was very difficult because the elevation at over 19,000 feet, you don't acclimatize slowly like on bigger mountains. So anyway, a couple of years later he wanted to climb another mountain. And that was the time when I woke up numb with the MS when I was training for Aconcagua. But dad was really the start of it all, and he's always been such a guiding light in my life to move beyond what you thought you could do. And my mom too. They were both my biggest fans. It's pretty wonderful to have their support through life.
And here I always thought that MS stood for “multiple sclerosis,” not “mountain summits.” And I recall that you told the elementary school kids you taught that those initials stood for something else too, right?
I did. I used to say it stands for “mostly strong,” because so many of us are possibly strong in one area or not, and I remember when they heard that I'd been diagnosed with MS, they didn't know what it was and it was scary. And it was a hard thing for me to accept, let alone telling five- and six-year-old children. And so I said it just meant that I was mostly strong... on most days I could be strong and could do everything, and some days it might be a little harder.
When did you finally let go of the fear and pain of being diagnosed with MS?
I think for me, it really was after that climb of Aconcagua because I was so afraid that I wasn't going to make it. And after summiting that mountain I came back down and the local newspaper wanted to interview me. And they said, "Oh, we want to talk about this climb of Aconcagua." And I looked at the woman and I thought, It's time to just be honest and open up about it. And I said to her, "Yes, and by the way, I was diagnosed with MS a year ago." And I still remember her saying, "Whoa, sit down, different interview. We're going to change it up a little here." And she had me tell about my MS experience. It came out a couple days later in the newspaper and everyone I knew heard it at the same time from my lips and not speculation.
So I really let go of the fear at that time because I thought, It's out there. I have to just move forward in my life, and the only way I can do that is by being honest with others, but also being honest with myself and stop expecting myself to live up to other people's expectations. None of us are perfect, and I can't fake being perfect for somebody, and I needed to just start living my life the way I wanted to.
Lori Schneider approaches base
camp on Mount Everest before
reaching the summit
Nearly 300 climbers have died on Everest with most of those bodies still remaining on the mountain. And given those staggering statistics, why climb Everest? And I assume that you have a more nuanced, thoughtful answer than George Mallory, who died on Everest in 1924 and who, when asked that question by a newspaper reporter famously answered, "Because it's there."
Yeah, because it's there. Well, it is there. I had no intention of ever climbing Everest, first of all. As a teacher, I have always been a goal-setter. And when I started climbing, once I realized that it was something that I enjoyed, I thought, I'm going to climb six of the seven summits... the highest peak on six continents. But I'm never going to do Everest because it's too hard and it's too dangerous. And then I thought, My whole life, 20 years as a teacher, my message to kids, special ed, first- and second-graders, kindergarteners, all of the children that I worked with, my message to them was “Believe in yourself and don't be afraid to try.” And I thought, I have to give myself permission to try.
So for me it was a matter of getting myself in the best physical shape that I could do, so I trained for a year. And previously, I'd been climbing other mountains, lesser mountains, to try to get myself in shape. But then once I got to Everest I let go of the outcome and I thought, I just have to believe in myself, and it doesn't matter if anyone else does or not. I just have to go and give it my best shot. And for me, that's what we have to do with whatever it is that we're trying.
What did it feel like when you stood on top of Mount Everest?
Good question. People always think that the view's going to be wonderful or how amazing it was to be on top. Well, you climb for, in my case, about 10-and-a-half hours up... still had another six hours to get back down, but when I got to the top a snow storm had moved in and I could not see a thing. So after thinking about Everest for 16 years, ever since that very first climb in Africa with my dad, dreaming about what it would be like to stand on top of the world, I got there and couldn't see a darn thing. All I could really do was to look inside. And what I saw was this person who had become brave. Ten years prior was the time when I'd been diagnosed with MS and told I might not walk... soon, let alone stand on top of a mountain — and the highest mountain in the world 10 years later. And I just realized that I had changed as a person and grew inwardly and really found my power in life finally, finally after a scary diagnosis and my life falling apart for a while after the diagnosis, I finally found my own power again.
So you said your life fell apart, but really it was falling into place. And your relationship with fear is extraordinary. Are you afraid when you're climbing the biggest, most dangerous mountains today?
Not really. I have a new attitude when I do these mountains. First of all, I go with the best climbing company I can go with because they're in charge of reminding us of the hidden dangers. They can also look at a person objectively and say, "You don't look good, you're done." And you have to say, "Yes, I'm finished," and believe them. But when I'm on a mountain, I realize that in order for me to stay strong on the inside I can't let fear in.
Lori (in green hood) crossing a crevasse on
And that was really my mantra when I climbed. And you'd go for hours and hours and hours, and everything on Everest is scary. I walked past the body of a famous climber, Scott Fischer, who was frozen in the ice. And something like that would have been enough to turn me around. Or the crevasses or the avalanches. All of those things are scary. And mentally I just had to say, Don't let the fear in. And I try to live my life that way now and prepare as well as I can. But then let go of the outcome and not let that fear rule your thoughts.
Has your MS flared up during your mountain adventures? And what kind of obstacles have you had to deal with from a health perspective?
I'm one of the really lucky ones, Phil. I had every symptom in the book for the first year, all of the awful things associated with MS — the fatigue, the numbness and tingling, vision problems, tightness of chest, the coordination issues. But really, after the first year I had some relapses for a couple of years, mostly with vision problems. But by the time I was climbing those big mountains it was rare that I had any MS symptoms. I prepared by bringing medications along should I have problems, but I really was very lucky. And one of the things with mountain climbing is that you go slowly and you don't overheat. Summit days are the really long days, you push yourself beyond what you think your limits are, but your pace is slow, it's calculated, and you really can self-analyze as you go.
So I've been extremely lucky, and everybody is not so lucky because there are people with this disease who have a hard time walking upstairs or across the room. And those are the people that inspired me to keep going. Every person I met that had a severe case of MS or any other diagnosis that made it difficult for them to live the life they wanted, those were the people I held in my heart as I climbed. Then I thought, I have to do this and take them to the top and help just redefine in my own mind what my limitations were, and then down the road help other people find some things that motivate them and kind of get back in the game of life again.
Lori climbing a wall of ice on
Well, along those lines, what is your motivation for creating Empowerment Through Adventure and organizing these trips?
Really for me, it's to pass on what I learned about believing in myself to other people who are dealing with diseases or illnesses, because I felt like my life was over when I got diagnosed. And so many people feel that way at first. And it's a legitimate feeling, it's very, very scary to hear that you've got something happening that can significantly change the way you live your life. But after I climbed Everest, I thought, Okay, I finished that goal, I did what I set out to accomplish. Amazingly, in my own mind, my body let me do that. But I thought, I don't need to climb anymore mountains, I don't need to prove anything else to myself.
My goal really now is to just help other people who are just trying to move beyond the fear, help them realize that it's okay to just try. But also people like me who have already possibly gotten beyond the fear and they just want to be in a supportive environment where it doesn't matter if maybe you're a little slower than somebody else, or maybe you have a shuffle in your step, or maybe your vision gets weird, or maybe your bladder control because of your MS or Parkinson's means you have to stop behind a tree more often. I wanted to create a safe, loving, supportive environment where we could get together and nobody's judging us. So that was really the reason I started doing these trips. And I believe that's such a powerful thing that we can share with one another and pass along to each other, just unconditional support and caring.
Well, it sounds like you extended that goal and that perspective by writing your book after the Kilimanjaro climb in Africa with people who had MS and Parkinson's disease. Tell us about that book and what kind of changes did you see in the people who went on the trip with you.
Well, that was an amazing trip. It was in 2011. I decided to kind of make my climbing come back full circle and finish where I started off, climbing Kilimanjaro with my dad. So in 2011, I asked my dad if he could come back to Kilimanjaro with me, and we would bring a group of people with MS and Parkinson's and then support friends to come along as well to climb that mountain. So we hired a wonderful climbing company to take care of the logistics, then I got together… we had 14 people with MS or Parkinson's disease, along with 14 partners who didn't have a label, but I kind of laugh at that because we all have something. It can be high blood pressure, you could be a survivor of a disease from before, you might have emotional issues, you might have cognitive issues. There are so many things, and many people live with different things that would be considered to be disabling.
Lori preparing for a night's sleep on
Everest with the 8-lb. oxygen tank that she
used 24 hours a day while above 25,000
But we went together, and almost everyone made it to the summit of Kilimanjaro. And when we came back down, it was such a life-altering event for all of us in the group, with or without a disease, that we wanted to share what we had learned with others. And so we wrote a book; it was called More Than A Mountain: Our Leap Of Faith. Because our team was called the Leap of Faith team. And in it, each of us wrote a chapter in the book, and we told of our own experience, dealing with our own health issues or what motivated us to come along. And in the end we thought, Okay, we want to use this book to help others. So we donated all the proceeds to MS and Parkinson's groups. And we donated to date over $20,000 from the proceeds because 100 percent of the proceeds go to MS and Parkinson's organizations. So we were very thrilled to be able to share that with others and give them a little strength too.
That's terrific. I did read the book and it was very inspiring, all of those stories from people who had such challenges. Yeah. That's great.
But yeah, it was a really powerful time for all of us. And what I've loved about it, the trip didn't stop when we got home. Besides writing the book, every couple of years most of the people in that group we get together again for activities and reunions, and last year I brought a group of people to the Bugaboo Mountains trip that was so successful; that's why we're doing it again this year. But on that Bugaboo trip last year, many, many of the people on that trip were people from the original Kilimanjaro trip. And they wanted to come back and serve as mentors to new people coming and remind them that we're all here to support one another and really to move beyond those labels and feel our own empowerment in our lives. So it was a great, great full circle event in my life, and in theirs too.
That's great. In that Bugaboo trip last year, and your repeat this July, what exactly does customized helicopter assisted hiking mean? What role do the helicopters play?
Oh, Phil, had I learned this before I would have done it a long time ago. Helicopter hiking is a unique way to experience mountaintops in remote areas without spending a week or a month hiking to get there first. When I do other climbs you've got a long, long walk just to get to where you want to start your adventures. Well, with the assistance of a company called Canadian Mountain Holidays, they provide wonderful helicopter-supported hiking trips throughout the summer. We start out in Calgary in Canada, they pick us up by coach bus, and they take us to the helicopter landing pad, which is kind of the Banff Lake Louise area. Then we fly by helicopter to a beautiful lodge only accessible by helicopter. They get us set for our mini-escape by giving us hiking boots if you need them, rain gear, free-of-charge hiking poles, backpacks, everything that you'll need to hike with.
The 2017 Bugaboo Helicopter-Hiking
Empowerment Team (photo by Bugaboo
mountain guide Lyle Grisdale
Then each day they divide our group of 44 people into four or five small groups of like-minded hikers, and they'll take one group and drop them maybe on a glacier, and then several hours later they'll pick them up and they'll say, "Oh, we'll take you over and you can have lunch by a lake," and they drop you over there and you walk around and enjoy that. Then a couple hours later or an hour later, they'll pick you up and take you through a meadow of wildflowers. And then the guides will say, "Okay, who's ready to go back? Who wants to keep going?" The helicopter might take three or four of you back to the lodge. Some may want to go. But each day it's customized to meet your needs.
Last year my dad, who's 85, went along with us. We wanted to do kind of a “smell the roses” kind of tour where we just did short hikes each day in a lot of flat areas. We didn't want to do climbing, we wanted to do hikes that were just scenic and wonderful. And so we went on some glaciers and ridge tops. Ridge tops are surprisingly straight most of the time. So they really customized it for us. Other groups were people that were real adventurers who wanted to do some rock climbing. They have these areas called Via Ferratas, which means the “iron way,” and there are iron rebar up very very tall walls of rock. And you can climb for an hour, two, three hours with a helmet and harness and a guide who gives you instructions there. No one had previous experience. And they would hook you up to safety equipment and teach you how to do that. And then you'd sit on top and then the helicopter would pick you up right where you left off.
So each night, a helicopter brings you back to the lodge. There's a hot tub, climbing wall, gourmet meals. It's just fabulous. And then each night you would go back to your room. You had a room, private room, private bath, very much a hotel setting. And a comfortable night's sleep and start all over the next day. So everything's provided. So it's a fabulous way to go if you want to have the feel of the mountains and an amazing remote experience, but not have to hike for a week or two to get there first. So it's great.
Click here to download information about ETA’s upcoming July adventure in British Columbia’s Bugaboo Mountains.
That sounds wonderful. Now, you give professional inspirational and motivational talks around the world. What is your message when you give these presentations, and where are some of the places you've spoken?
Lori on the summit of Mount Everest
displaying the World MS Day flag
Oh gosh. I'll tell you, I've been so fortunate through all of this because when I climbed Mount Everest and I stood on the top, I held the flag for the first ever World MS Day, and that flag was given to me by the World MS Day Association in London, England, in hopes that I would make it to the top. So when I returned from Everest, the BBC in London did about a half-an-hour video in the studios there with me, and it was broadcast around the world. And so I started getting offers to speak. And at first they were for MS societies and MS groups, and then it really expanded from there. Sometimes I'm talking to big companies and they want to have me speak with their innovation team — How do you turn a small idea into a big one? How do you get the courage to be bold in your business world and move beyond thinking this would be a great idea to actually implement it? Those kinds of things. And in a couple months... right now I'm preparing to speak at a statewide convention about safety, and you better believe we had safety procedures in place on Everest and every other mountain.
So I really customize the presentations for whatever the company is or the audience is. But my message is always the same, it's moving beyond what you thought you could do, and just getting out there and trying. And not being afraid to try and not being afraid to push your own boundaries a little bit, and really reach the top of your personal game and reach your goals whatever they are, whatever they are. Mountain climbing is my thing but it's not most people's thing. And the message isn't about mountain climbing, it's about just believing in yourself.
And that's a very powerful message. How can people contact you to say hello, get more information about a speaking engagement, or maybe join your helicopter hiking group in July?
Lori poses with the summit of Mount
Everest as a backdrop
Well we can put the information, the website, and also my email on your site, Phil. A couple good ways to get more information about my speaking is my speaker website, I also have an Empowerment Through Adventure Facebook page. And my personal email is on that because I'm a one-person show. I'm the one that answers all of the emails. And I would love to invite all of you to come along with us. We have people from all walks of life, all abilities. We even have some that just wanted to go and get dropped by a lake and sit for a couple of hours and read a book while their friend or their spouse did some hiking. There's so many options, and it's such a great opportunity on this Bugaboo trip. But it's one of those things where I'd love to have anybody who's interested contact me and I can send you all the information so that you'll have everything you need to make a decision. Or invite me to come and speak. I really feel it's an honor and a privilege for me to share my story with others because we all have our own stories, and mine is about just taking back your power and finding your way through life just by believing in yourself.
Wow. Thank you for sharing your journey of courage and self-empowerment with us today, Lori. You are one amazing woman.
No, just a little gusty from time to time, but thank you, I appreciate that though, Phil.
Lori Schneider is an international speaker, accomplished author, teacher, pioneering mountaineer, adventurer, and advocate for those living with neurological disorders and disabilities. Her story has been translated into more than 20 languages, giving hope and inspiration to people around the globe.
Lori and her organization, Empowerment Through Adventure, inspire others to take their own leap of faith, scaling life’s mountains and obstacles, and climbing beyond their own preconceived limitations.
After developing a bad case of wanderlust when she was 15 years old, Lori traveled to the corners of the earth in search of unique cultures, people, and challenging experiences. After graduating from an all-women’s college in 1978, she began a 20-year teaching career, working with special education children as well as kindergarten and first-grade students. In 1999, at the age of 43, Lori developed something else; she awoke one morning with numbness in over 50 percent of her body. Within two months, it had spread throughout her entire body. The doctors uttered two little letters: MS. When the crippling shock of the Multiple Sclerosis diagnosis wore off, Lori decided to accelerate her love of travel and mountains, and set out to climb the highest peak on each continent. With the highest peaks in Africa, Europe, South America, North America, Australia, Antarctica, and Asia under her belt, Lori became the first person in the world with MS to conquer the "Seven Summits.” Lori’s message to adults and children alike reminds us that if we believe, we can achieve.
Click here to order Lori’s book, More Than a Mountain: Our Leap of Faith. By purchasing this book you will be supporting MS and Parkinson's organizations, and will help to provide adventure opportunities for others with MS and Parkinson's to live their dreams. A mountain of thanks!
Lori’s story is told in great detail in The Promise of Hope, a book by Guideposts‘ Editor-in-Chief Edward Grinnan. I read the book and thoroughly enjoyed it. Click here to order it for yourself.