“I was always drawn to the mountains.”

I grew up in southern Wisconsin the first 18 years of my life. I was always drawn to the mountains, so I moved out to Colorado where I was married to a man and the mountains for 20 years.

After an MS diagnosis, Lori feared she might be confined to a wheelchair someday. So she set the goal of climbing the Seven Summits.
Photos by Jeremy Oswald

Lori Schneider | Bayfield, WI

I’d been an elementary and special education teacher in Steamboat Springs. And long story short, I got diagnosed with Multiple Sclerosis (MS), divorced my husband, quit my job, ran away from my life there, and moved back to the comfort of Wisconsin. 

One morning I woke up and half of my body had gone numb overnight. It was like someone had drawn a line down the middle of my body and one side was numb and the other wasn’t. So I called the doctor and I said, ‘Something’s wrong.’ He said, ‘Well, if it’s still numb tomorrow, why don’t you go into the emergency room.’ 

So I woke up the next morning, still numb, and I was beginning to have other symptoms as well. My vision started to get very blurry and shaky, and I had pins and needles feeling all over my fingertips, toes, and face. So I went in and they started running tests but they couldn’t determine what was wrong. They ran tests for multiple sclerosis, Lyme disease, lupus, and brain cancer. They were checking me for so many things.

I still didn’t have a diagnosis but was in the hospital to have a brain biopsy done. I said to them, ‘What is a brain biopsy anyway?’ They said, ‘Well, we screw you into this halo device, so you can’t move your head. Then we’re going to cut open your scalp and drill three holes in your skull in a little triangle shape and remove a piece of bone. We want to stimulate different parts of the brain to see if we can figure out if there is a tumor or just what this numbness is about.’  I remember him saying to me, ‘We have to do this while you’re awake because we don’t want to remove a piece of brain tissue that you might really need.’

So I’m sitting there trying not to totally lose my composure, and I heard my name being paged over the intercom in the hospital, and I said, I want to answer that phone call. The nurse said to me, ‘No, the surgeon’s waiting.’ I said, ‘I really want to answer that phone call.’ So I went up to the desk and the person on the line said, ‘We’re a teaching hospital. We change teams the first day of each month, and I’m your new doctor, and I don’t think you have brain cancer, so I don’t think you should have this procedure done.’ I asked, ‘Well, what should I do?’ He said, ‘Go up to the desk, ask for scissors, and cut off the hospital wristband and go home.’ And I did. I remember the nurse chasing me down the hallway, but when I got home, he said that the first team had actually misread the test they’d done three months prior that revealed I did have MS.

MS is an autoimmune disease where your body attacks the healthy myelin that wraps the nerves. If you think about the cord of an appliance, like a vacuum cord, and if that cord got terribly frayed, sometimes the vacuum might work and sometimes it might short out because the wires are exposed. And in our bodies, our wiring system is wrapped with a fatty substance called myelin. So when that myelin breaks down with MS attacking the myelin, sometimes you don’t get proper signals to the brain. MS affects the spinal cord and the brain, and depending on where scars form, multiple sclerosis, sclerosis means scars.

So it just started a spiral of fear with me. My life changed in an instant. I thought, if I’m going to have mobility issues, which one of the doctors said I might be in a wheelchair within a year, I have to do everything I ever wanted to do now while I still can.
I was 43 years old.  I remember thinking I was in the best physical shape that I had ever been in because at that point I was a runner. Some days I would go four miles on the treadmill before I’d go into my teaching position for the day. I was lifting weights, and I remember thinking, how can this be happening to me in my life?

It was a very scary time. I thought, I have to experience life now. I have to do every physical thing that I’ve ever wanted to do now. I had been married for 22 years to a really nice guy, and I told my husband that I needed to leave. I needed to start experiencing those things that I wanted to do, check off the things on my bucket list. So I ended up leaving and moving back to Wisconsin to the comfort, and safety net of my family. I came back and started life over again.

When I was young, growing up in Wisconsin, I used to go to a canoeing summer camp up in Manitowish Waters. I'd go away for a couple of weeks every summer. I learned to be self-reliant, to paddle and portage a canoe, how to read the weather and the waves and maps.

After an MS diagnosis, Lori feared she might be confined to a wheelchair someday. So she set the goal of climbing the Seven Summits.

Then, when I started climbing, it was more of that feeling. You find your insignificance when you’re in a place that is so awe-inspiring and significant in its way. You start to look at the world a little differently – that you’re a small part of this huge, big, beautiful experience. Your problems don’t seem quite so big anymore when you look at the expanse of life.  

From the January morning of 1999 when I woke up numb until I got my MS diagnosis in March I had a lot of fear and confusion about my physical symptoms. While I worried about what my future might hold I continued going to work each day, letting the joy of teaching five-year-old kindergarten children distract me from my physical and mental anguish. Once I got my MS diagnosis I needed to undergo IV steroid treatments for about a month, often heading to the hospital directly from my classroom. The infusion site on my wrist was wrapped with a bandage to hold the device in place and kept it out of view from my students and colleagues.

Fear that I would soon lose my ability to walk, my sense of self-worth went spiraling down with every drip of medication. I was embarrassed that I had an illness I knew nothing about, ashamed that I was not strong enough to rise above the adversity in front of me, and fearful that I would never regain my physical and mental strength. I kept my diagnosis a secret and decided to retire that June from my 20-year teaching career before anyone knew and while I still had good use of my legs. In my effort to run away from my perceived limitations, I told my husband I needed to accelerate my love of hiking and adventure, and that sadly, I was leaving. I needed to find myself and felt the only way I could really do that was on my own. We parted friends when I left Colorado and moved back to Wisconsin, to the support of my family.

I immediately started mountain climbing. I was always drawn to the mountains because of their serenity. Climbing is a solo sport in so many ways, and I needed that solitude to regain my own sense of peace. My father and I had climbed Mount Kilimanjaro, the African continent’s highest peak, back in 1993. But now it was 1999 and I had MS. It was his idea to do another climb, this time Mount Aconcagua in South America. And I still remember him saying, ‘This one has to be harder than the last one.’ And I said, ‘Do you remember we almost didn’t make it last time?’

It was almost exactly one year to the day from when I woke up numb that I stood on top of Mount Aconcagua. The climb was tougher than I imagined. Climbing the steep rocky terrain at nearly 23,000 feet was exhausting and tested my limits both physically and emotionally. It was a real test of mind over matter. My mind won that day. I decided at that moment to stop hiding this illness from everyone. If I was strong enough to climb this mountain, I was strong enough to accept the fact that I had MS and stop being afraid and embarrassed by it. When I got back, I ended up being interviewed by a local newspaper and they wanted to hear about my climb of the highest peak in South America. I said, ‘Well, let me tell you first that I have MS.’ And they said, ‘Whoa. Okay, wait a minute. Back up.’

So everybody heard about my news at the same time because it came out in the newspaper. It was like ripping the bandaid off of that emotional scar that I was hiding, and from that moment on, it wasn’t so bad. The physical aspects of it were still hard, but mentally, I gave myself permission to just move forward.

After that climb in South America, I saved money to do another climb. Two years later, I was ready to go to Russia and climb Europe’s highest peak, Mount Elbrus, which straddles the border of Asia and Europe. The day before I was supposed to leave, I got a phone call from my dad that my mom had died. She had died suddenly from heart disease that we didn’t know she had. I remember canceling the climb and just crumbling and spending time back at my dad’s for a month or so just to regroup because it was so hard on our family.

My mother was such a wonderful, strong, supportive person, and she was my biggest cheerleader when I would go do my climbs. After about a month, I ended up joining another climbing team with my dad’s encouragement. He said, ‘Your mom would be so mad if you didn’t do this.’ And so I climbed that peak.

When I first got diagnosed with MS, I was defining myself by what I thought I couldn't do or I wasn't going to be able to do. What I realized very quickly was I have to define myself by what I can do.

After an MS diagnosis, Lori feared she might be confined to a wheelchair someday. So she set the goal of climbing the Seven Summits.

That’s when I really decided to set a goal to climb the highest peak on each continent, the ‘seven summits’.  I wanted to start to define myself by what I’m good at. I knew I had to accelerate my physical goals before I couldn’t do them. 

So next I went to Alaska to climb Denali. That was physically really demanding, the hardest probably of any, because I was the only woman on a team of 10 men who were younger and stronger.

I trained for a year, every day, four hours a day, and got my body in as good a shape as I could get in. I was very strict with my nutrition for one year, no sugar, no caffeine, no alcohol. I counted how much protein I put in my body. I really worked hard to get in the best shape that I could because I knew the odds were already against me. I hiked up hills at a local ski area in Wisconsin where I lived. Other times I would tie tractor tires or truck tires to my climbing harness, which was a belt around my waist. I would pull them for miles every day. I did a lot of strength training, weight lifting, but mostly, I tried to strengthen my balance because with MS, my balance was wonky.

When I got to Alaska to join the team, they looked at me like, ‘Oh, God, it’s a woman. And she’s old.’ I was 50 years old at the time, and the team knew me because everybody reads each other’s bio, and they said, ‘Is it true? You’ve got MS?’ I said to them, ‘I’ve trained really hard. I’m going to do the best job that I can. I won’t ask you to do anything for me, but I’m happy to help in any way that I can.’

I was dragging a sled with 60 pounds of gear in it and another 60 pounds on my back, 120 pounds total, which is the exact same weight that the men have to carry. After the first day, they said to me, ‘You’re in.’ It was a great trip.

My final goal was to climb Mt. Everest. I had already climbed the other six summits. I was fortunate enough to have the opportunity to take a flag with me to the summit of Everest for the first-ever World MS Day. They contacted me before the climb. They said, ‘We’d like to raise awareness of MS. If you make it to the summit of Everest, would you hold the flag?’ I said, ‘Sure.’ They said, ‘We’ll send you the flag.’ Well, it didn’t arrive in time, so they strapped the flag on a yak and sent it to base camp in Nepal. I took it off the yak. It was so smelly, but I was so proud of it. I folded it up and I wore it next to my heart under my parka every day for the two months that I was climbing.

I got to the summit. It was a blizzard. I unrolled the flag. I’m holding up the flag and I had someone take a photograph. We were up on top there for 10 minutes. You climb for two whole months, and you’re up on top for 10 little minutes and then you turn around and come back down. 
When I got to the summit, I had a satellite phone and my family and friends knew if I made it, it would be about 10 PM Wisconsin time. And finally, after dialing and dialing, I heard my dad’s voice on the other end of the phone, and I said, ‘Dad, dad.’ And he said, ‘Lori, Lori, where are you?’ I said, ‘I’m on the summit.’ We were both crying and then he said, ‘Now we’ve got to get you down.’  

I also had a flag that was signed by my family and friends and my Bayfield community. They had thrown a party before I left, and I had the flag out and everyone signed it. The town is only about 450 people and everyone wrote little messages on pieces of paper, and they stuck them in a big envelope. I took that with me and every single morning when I got up, I would read every note. You know, ‘Hang in there, Lori. Good job!’ Every night before I’d go to bed, I’d read them all again.  All these people were sending me love and encouragement all the way there. It really gave me so much strength. It was such a powerful time in my life. I learned about the power of a positive mindset and about not giving up.

 

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A few weeks after returning from Everest, I was invited to the World MS Day headquarters in London, where I was interviewed by the BBC. The story got picked up internationally.

 I started getting calls to speak in Europe and I got calls from all over the US, Wisconsin, public television, PBS. So it’s just strange how I thought the worst thing that ever happened in my life, getting MS, ended up being such an unexpected opportunity. It gave me a different focus and a way to give back to others living with this disease.

When I was getting ready to climb Everest I didn’t have the money to do it. After leaving my teaching career I sold my share of our Colorado home to my ex-husband and used that money to fund my early climbs. But Everest cost almost a hundred thousand dollars to do it. In addition to the climbing fees, the airfare and the helicopter transfers are around $10,000, and then maybe $10,000 worth of gear. Then you pay an extra $15,000 for supplemental oxygen. I had no sponsorships.

So I went to the bank to take out a loan. I remember the man sitting behind the desk said, ‘What do you want this money for? Are you putting a down payment on a house?’ I said, ‘No.’ ‘Are you buying a really fancy car?’ ‘No.’ He said, ‘Well, what do you want the money for?’ I said, ‘I’m climbing Mount Everest.’ By then I was 52. He looked at me, and he said, ‘Would your father co-sign the loan?’ So, I called up my dad and I said, ‘Would you co-sign for me?’ My dad said, ‘Sure.’ It was funny. 

I really believe that we have to invest in ourselves. When I took out that loan, I knew I was going to tell my story when I finished the climb. Every time that I got hired to speak somewhere, I would sign the check and bring it to the bank and not even cash it. It went right toward paying off the money and in three years I paid off the loan.  

One of the questions everybody always asks me is, ‘What’s next? What do you do after Everest?’ I said, ‘I don’t need to climb any more mountains. This was a goal that I set. I’m closing that chapter of my life, although I still climb for fun.’ What I want to do is to give other people with MS the feeling that they can try as well to reach their own goals.

I started organizing a few trips where I took other people with MS on adventures to experience nature.  In Africa, we climbed Kilimanjaro, 14 people with MS and some with Parkinson’s disease. I took people with MS and Parkinson’s disease to Canada to do some helicopter hiking. I’ve also arranged some less strenuous trips since not everyone wants to do that kind of rigorous climbing. I wanted to help people who thought their life was over…like I thought mine was…help them realize that it’s not. This is really what makes me feel happiest, just being a mentor of sorts to people, just to remind them that their power lies within and not be afraid to try. Although I no longer organize adventure trips, I still enjoy speaking with others about self-empowerment.

Adventure has always been so important to me, and so that really started a path for me. Through my business called “Empowerment Through Adventure” I remind other people to get out into nature, because it helps you focus on something other than your problems. When you’re hiking or swimming or snorkeling or skiing, you’re single tasking. You’re thinking about what you’re doing instead of, ‘Did I pay the bills today? And how do I feel? And what’s happening at work?’ You really do single task when you’re out enjoying life and nature. So I use adventure as a tool in my own life to redirect my mind when I need it.

Not everybody wants to climb mountains. But pick a goal that you’d like to do, and don’t be afraid to try. 

Achieving a goal can take a long, long time. From the very first climb of Kilimanjaro to the time that I finished Everest, it took me 16 years. I still remember getting to the top of Everest and thinking, ‘I’m finally here.’ I look out. It’s a white-out. We had terrible weather on summit morning. I thought, ‘After 16 years of planning to be here, I can’t see anything.’ It was a really powerful time of going within and realizing how much my life had changed and how I had changed and grown.

In the early years of diagnosing MS, doctors often told their patients ‘Slow down. Don't exert yourself too much. If you get overheated, it makes your symptoms worse. Just try not to stress your body.’

I remember ads on TV when I was a young girl saying, ‘MS: crippler of young adults.’ That used to be the message. I thought, ‘To heck with that. If I’m going down, I’m not going down without a fight.’

When I moved back to Wisconsin in 1999, I ended up getting connected with a wonderful neurologist at University Hospital in Madison, and he really set me on the right course. I had vision problems, I had mobility issues, I had trouble processing things. I was having issues with my balance and hearing. After a few years and some different treatments, my symptoms went away. With MS, some people like me, have relapsing remitting MS which means you’ll have a relapse or an episode, and then your symptoms will go away for a while. Then it might be a month later, or it might be years later, you may have symptoms again. So I’m one of the lucky ones. I had symptoms, that would come and go, but some people have symptoms that never go away. My neurologist was very encouraging with my climbing, he said, ‘You know your body. You’ll know when enough is enough.’

I know I am one of the lucky ones because my body responded well to treatment. But that’s not to say that everybody’s course is the same as mine. Some people live with symptoms their entire life, and their disease progression can make life extremely difficult. They have been my inspiration to become an advocate and voice for this disease, in hopes of raising awareness. My goal is to remind others to live their dreams, whatever they may be.

The lesson I’ve learned is to let go of the outcome, try your best, but don’t worry about what you can’t control. Just believe in yourself and give yourself permission to try. And it’s really freeing not to expect anything of yourself other than to try.  

Never in my wildest dreams did I even want to climb Everest. But getting sick and having people tell you, you can’t do anything physical anymore because now you have MS, or you have cancer, made me want to prove to myself that I was still strong inside and out. I had to give myself permission to just try. You never know what you can do until you get out there. Work hard and then let go of the outcome, and you just might surprise yourself.

Several years ago I also got diagnosed with cancer and I went through a year of chemotherapy treatments. And every day when I would go in for the treatments or take my pill, I thought, this is a positive thing. I have medicine that can help me get better. The only thing I can really control is my attitude about what’s happening to me. I have to be positive so that I can keep moving forward. I can’t have the mindset that this is the end, because if I quit, I’m going to stop or go backwards. I want to keep moving forward. Always. And after a year of treatment, I am cancer free. 

I can either be sad and be afraid of the MS diagnosis or later the cancer diagnosis, or I can mentally put them in a box and put those fears and those labels on a shelf in my mind. I remember that they’re there, but I don’t have to look at the box every day. 

I still go in for my yearly brain scans because you need to do that. MS is a silent disease in many ways.  I enjoy being able to pass along hope to other people, that it’s not a life sentence. When you’re diagnosed with certain illnesses or diseases you think, ‘This is it. My life’s over.’ I say, keep going and have fun while you can and enjoy life and move forward in positive ways, mentally and physically, because you have to find quality of life regardless if you have physical mobility anymore. That’s not the defining factor.

Where are you mentally? Are you happy and are you finding things that allow you to express yourself and to find joy in life again? That’s the most important part. I remember thinking when I got diagnosed with MS, if I’m in a wheelchair, I love to read to kids, they can sit on my lap, I can read to them. Don’t let the disease make me feel like I’m a failure because I can’t do something. What is it that I can still do? And really exemplify that in your own mind and use that to move yourself forward.

Lori’s story was produced by Rebecca Lemar. You could learn more about Lori at LoriSchneider.net. 

Photo 1: Lori on the summit of Mt Denali;  Photo 2: Lori and her dad at the top of Mt Kilimanjaro; Photo 3: Lori on the top of Mt Everest on World MS Day; Photo 4: Lori training from her home in Bayfield; Photo 5: Lori, hiking the Tour Du Mont Blanc.

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