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Four-time World Cup champion skier Lindsey Vonn is no stranger to navigating bumpy terrain: She has battled depression, overcome debilitating insomnia, and bounced back from a slew of knee injuries. But nothing could have prepared Vonn for her hardest hurdle yet. In August 2021, her mother, Linda Krohn Lund, was diagnosed with amyotrophic lateral sclerosis (ALS)—also known as Lou Gehrig’s disease—a progressive terminal neurological disease that attacks a person’s motor neurons, causing the muscles to atrophy until death. “ALS tests you in more ways than I could ever describe,” Vonn says. The average life expectancy for an ALS patient is generally two to five years; her mother died exactly one year after being diagnosed. Below, in her own words, Vonn speaks candidly for the first time about the overwhelming grief of losing a parent to ALS—and why you should never waste a chance to say I love you.
To be a successful athlete, you have to be good at compartmentalizing. You put pressure, expectation, and injury—all these things—into a box. Then you lock it up, and focus on what’s right in front of you. That’s also what I did after my mom was diagnosed with ALS in August 2021. When we were together, nothing else mattered. I was focused only on her. And when I wasn’t with her, I tried to be happy, find balance, and not stay in a depressive state. Some will probably say that compartmentalizing isn’t healthy, but for me it was the only way to survive.
None of us expected her to die as quickly as she did. One year later, she was gone. Grief is something that you learn to live with, but it doesn’t go away. My mom’s texts are still in my phone, and sometimes I go back through the inspirational quotes she sent to our group family chat. I also kept her journals and her books, including her Bible. Whenever I had a race, she’d read a certain passage and then write down on the page how I placed. Things like that are really special to me now.
My mom lost her own mother when she was 16, and she always used to say, “I talk to her, and when I’m gone, I want you to talk to me as if I’m still here.” So I do. Sometimes I’ll sit outside and talk to her. I think she’s there with me, and that helps.
It’s only when you see how quickly things slip away that you realize anything can happen at any moment. I now use every opportunity that I have to live my life to the fullest. I never waste a second. I keep perspective of how lucky I am.
My mom had been experiencing symptoms for a while. Because of a stroke she had while giving birth to me, she always had trouble with balance—but she was starting to fall more frequently. She fell down the stairs and broke her arm. On another occasion, she broke her hip. I was in Los Angeles when a doctor called to let us know she had ALS. My family and I weren’t expecting that news. We were in shock.
To be honest, I didn’t realize that the diagnosis was a death sentence. My initial thoughts were: What are our solutions? What treatments can she do? What medications are there? What’s the course of action? But then the doctor explained that there is no solution and there really is no medication that works.
It took us a while to figure out what to do next. We sat down and made a plan of all the things that my mom wanted to do before things would get physically impossible. Unfortunately, she was already in pretty bad shape and we didn’t end up doing many of them. I mean, she wanted to go skydiving!
At first, the disease’s progression seemed relatively slow. Her balance was bad, but she was still walking. Swimming was the one physical activity she loved that she could still do. She swam almost every day. But it got to the point where she could no longer swim, because she felt like she was going to drown, which scared her.
By Thanksgiving, mom was using a wheelchair 75 percent of the time and it was becoming increasingly hard for her to do anything at all. She choked on her food and almost died several times, before undergoing surgery to get a permanent feeding tube. The surgery itself almost killed her, too, and she spent weeks recovering in the hospital.
She went into a 24-hour care unit, and from there, it was a quick decline. She couldn’t swallow or have anything in her mouth, not even a sip of water. She was eating protein shakes through her feeding tube three times a day, but still losing a ton of weight. She needed to sleep with a breathing machine, which she hated.
I wanted to take care of my mom and give her everything she wanted, but it was hard to manage. My role as the oldest child was to support her, but also to support my siblings and financially support the entire situation. The one thing that my mom didn’t want was for her illness to be a burden on anyone or for it to take away from anyone’s life.
Sometimes she pushed us away, because she didn’t want us to wait on her all the time. My mom was determined, smart, and an incredibly positive person, who was always looking out for others. She was one of those people that cared about everyone else above herself.
I tried to balance everything for the sake of my own mental health. My mom didn’t want me to miss any trips or opportunities that came up. Sometimes I look back and wonder, Should I have seen my mom and not gone on that trip? But she pushed me to go.
I see people in similar situations, who are struggling or who don’t want to do anything for themselves, and it ends up being unhealthy for everyone. ALS tests you in more ways than I could ever have imagined. It’s hard to take the time for yourself, but if you let it consume you, it takes as much from you as it does from your loved one.
It’s okay to just sit in the emotion. That has also helped me. I try not to cry publicly too often, but when I’m home, I let myself cry and I don’t try to stop. I could be crying for a long time or for a minute, but acknowledging that I’m feeling a certain way helps me. Compartmentalizing to get through the day is one thing, but there also has to be time to unload your emotions. Those two things go hand in hand—the survival component and the actual grieving part of it.
In August 2022, we got a call from my mom’s hospice worker: She was struggling to catch her breath. When you have ALS, all of your muscles stop doing their job. The only solution to keep her alive at that point was with a breathing tube, and she didn’t want that. We’d had a couple of scares, but after that call I had a feeling that I had to get to her. Four hours after I arrived, my mom died. I still have nightmares about her final breath.
In the immediate aftermath of her passing, I felt relieved in some ways. At least she wasn’t in pain anymore. It had been so hard to watch her struggle every day. But after the funeral and those first few weeks, you realize that you don’t have a mother to call when you need help. I thought I’d asked her all the questions I wanted, but there’s always more. I was lonely.
Initially, my mom didn’t want anyone to know about her illness besides the people closest to her. But when she started to decline, she told me, “I want you to use your platform to bring awareness. Hopefully what I’m going through, no one else will have to go through.”
Obviously I can’t stop ALS, but I can follow my mom’s wishes, and that’s what I’m doing. It’s not easy being in the public eye and losing someone. Sometimes I feel like I just want everyone to know who my mom was and how amazing she was. I’ll post on Instagram, but then I think, No one wants to hear you crying. Sometimes I feel like maybe I’m sharing too much, or that no one wants to hear what I have to say, but I’m overwhelmingly emotionally drawn to telling my mom’s story and telling everyone how much I miss her.
I’ve always had a different outlook because of my mom’s stroke, and since she died I’ve relied on that perspective even more. Whenever I got hurt skiing, I would ask myself, If my mom can be as positive as she is, who am I to complain?
What I’ve learned is to never waste a chance to say I love you. Don’t waste a chance to give someone a hug. Don’t wait for an opportunity. Go do it. Go explore. Go live. Go try. All I can do is do what my mom did and just keep trying with a smile on my face. When I have children one day, I hope all the lessons I’ve learned in my life will come together. And hopefully I can raise good kids that my mom will be proud of.
Katie C Reilly is a freelance writer based in Oakland, CA. Her writing primarily focuses on women’s health, mental health and parenting and has appeared in The Washington Post, The New York Times Magazine, Parents Magazine and Newsweek, among other publications.