Highland Profiles is a series highlighting West Virginia’s exemplary outdoor adventurers, business owners, and community innovators. If you’ve got someone in mind worthy of a profile, drop us a line: email@example.com.
By now, you’ve figured out that this issue highlights many of West Virginia’s talented women. While there are many strong women among our hills and hollows, Molly Wolff is undoubtedly one of the strongest.
She’s a skilled adventure athlete, one of the state’s premier photographers, a wife, and a mother of two adorable kids. Last year, Molly fell inexplicably ill before being diagnosed with an auto-immune connective tissue disease. She somehow finds the time and energy to balance her many titles while dealing with a degenerative disease that can, at times, be completely debilitating.
Although I “knew” Molly for several years through contact on social media and publishing her photos in the magazine, I hadn’t spoken deeply with her prior to our lengthy discussion in late August. I laughed, teared up, and was inspired by her journey. I can only hope that you have a similar experience after reading this candid interview. May Molly’s attitude and outlook lead us all to look at life a little differently, appreciate the good days, and push on through the tough ones. This interview was edited for length and clarity.
What’s your coming to West Virginia story?
I grew up in the outdoors in New Hampshire. My parents were into hiking and camping, nothing extreme, but I really gravitated toward that. I ended up at Southern Virginia University on a cross-country scholarship and got my bachelor’s in physical education and recreation administration. During undergrad, I did a semester with the National Outdoor Leadership School (NOLS) in the southwest, and an internship with ACE Adventure Resort [on the New River], where I became a whitewater rafting and climbing guide. After I graduated, I didn’t know what to do, so I came back to West Virginia and continued raft guiding at ACE. My husband David and I originally met in raft guide training, which is hilarious as a sort of raft guide romance.
We moved out to California and worked as climbing guides in Joshua Tree for a few years before David had the opportunity to move back and start New River Climbing School. We really prefer West Virginia over California. It fits our lifestyle and mentality and feels like home. I came back to ACE to guide for a few years and worked in the marketing department before starting my own photography business. I do contract work for West Virginia Tourism, commissioned work for publications, and sell my images at galleries. I also put in a couple days a week for Active Southern West Virginia; getting people active is something I’m passionate about.
Tell me about your adventure with motherhood.
We were really excited to become parents. I can definitely relate to other women who are struggling to get pregnant or be able to carry to term. I’m only five years into this and love being a mom, but it is the hardest thing I’ve ever done. I love how there’s a shift in gender roles and dads are becoming more involved with their kids, because that’s how it should be. David carries equal weight in our household with childcare and domestic work. We’re a total team.
As a mother, I have a lot of guilt that I’m not showing up for my kids while I’m getting out working and playing. I have to overcome that because I know I’m a good mom and I’m giving them a great life. But I think it’s important to do what you enjoy, and I think I’m a better mom for pursuing things that are important to me. Struggling with guilt is a common theme in motherhood. Are we enough? That’s another question women have to face. We have so much pressure to be at home with our kids but also be killing it in a career. Struggling on a daily basis with all these concepts of what we’re supposed to be is grueling.
Your life drastically changed last year. What happened?
In January of 2019, I was named Photographer of the Year by Blue Ridge Outdoors magazine. I was super psyched and doing really well. Two months later, I got super sick. I lost about 40 pounds and had numbness and tingling in my hands and feet. I couldn’t walk; I couldn’t see. I didn’t know what was happening. My tests kept coming back normal. I had a brain MRI and they found lesions on my brain. At one point, I thought I had multiple sclerosis. I had a false positive for Lyme disease. I spent over a week in the hospital and it took over a month to get a proper diagnosis. I have overlapping autoimmune diseases including lupus, rheumatoid arthritis, and osteoporosis as a complication from medications. I went from being really high to my life completely falling apart.
How have you pushed through?
It’s been over a year since I’ve been in the hospital. I’m doing so much better, but it’s really affected my career and everything else in my life. I have trouble breathing because of my lungs. I have weak bones, weak muscles, and joint inflammation. I have sensitivity to the sun. I’m 35 and it’s been really depressing. I struggle with mortality. Over half of people with lupus end up having kidney failure. It’s a debilitating disease and I know that it will impact me later in life.
“I don’t feel pain when I’m on the river, which helps me live in the moment. Kayaking seriously saved my life.”
How has your disease impacted your adventure lifestyle?
A lot of people end up living pretty normal lives with lupus, but being a really active person, it’s already affected me. I don’t know how long I’ll be able to do things. I know being active keeps me healthy, but I’m one fracture away from being in a lot of trouble or needing surgery. I can’t run, I can’t wreck my mountain bike, I can’t fall while bouldering, I probably can’t drop waterfalls in my kayak anymore. The doctors asked if I’m at risk of any falls or impacts, and I’m like, “Yeah, I live in an impact world.” Osteoporosis was a new diagnosis that’s really hard for me just because I’m fragile now and if I push it and break my pelvis, I’m so screwed.
How has your disease impacted your family?
It’s been hard for David because he has to deal with taking care of me and the kids, doing the work, the grocery shopping, everything fell on him. And dealing with the fear of being a single parent, with the fear of me dying; he has been through a lot with this.
I’m immune-compromised, so we don’t use childcare and one of us is always home with the kids. We love it, but it’s pretty full-on. I struggle with my energy level and I have to limit my sun exposure because that is a disease trigger. My five-year-old Arthur asks, “Mom, why are you always sick?” It sucks to have to answer that to your kid. I tried to explain to him what lupus is and he’ll ask questions like, “Are you going to be sick until you die?” Imagine having your child ask you that and you have to say, “Yes, I will always be sick.” I’ve told Arthur the most important thing in life is to be kind to other people. It’s fun to have these deep life conversations with a five-year-old because they have so much pure insight. If one good thing comes out of this disease and parenting, it’s that my kids will hopefully grow up a little more understanding and compassionate.
You got really into kayaking. How did that come about?
I’m honestly kind of shocked that I did. I never had an interest in kayaking; I was terrified of being trapped in the boat and being upside down underwater. I think what drew me to it the most was the stress of motherhood and getting a little bit older where I wanted something that was mine. I was tired of just being a passenger in a raft. I wanted to be my own thing going down the river, to be completely in charge of my destiny.
I learned to roll a whitewater kayak in a pool in December of 2018 then started having symptoms in early 2019. Kayaking came along synonymously with this disease. Fortunately, I made some great friends who helped me get back in my boat even before I could walk. They were carrying my boat to the river and I would use my walker or cane to get in the boat and paddle around on flatwater. I kayaked my first piece of whitewater in June of 2019.
What’s it been like pushing yourself in a physically demanding sport while dealing with a debilitating disease?
Kayaking was super therapeutic in my recovery; it gave me a goal to work hard and get back out there. I went from not walking or being able to pee on my own to running hard rivers pretty quickly. I latched on to that as something that provides encouragement and makes me feel good about myself. The day after boating, I’m in a ton of pain. You don’t get freebies on whitewater; you truly are in charge of yourself and you have to work at it. There’s no faking it. It’s really empowering when I’m like, “Hell yeah, I just ran what this dude did and he’s been doing this for 20 years, and I’m a mom with kiddos.”
But on the flip side, when I’m feeling weak and unsteady, I get really upset. Like, should I just quit kayaking because it’s frustrating? I know I’m not going to do it forever, so why put in the time to work on it? It’s kind of that cliché of just enjoying things while you can. If I get another good year kayaking, I’m super proud of what I’ve accomplished.
How has kayaking helped you cope?
Kayaking is very gentle on my body if I’m careful. I’m less likely to break things kayaking than I am mountain biking or climbing. When I’m on a kayak run that’s harder, which is often for me, I stop thinking about work and disease. I’m truly focused on my line and when I make it through that run, it’s like the best feeling in the world. No matter how scared or nervous I am, I have such a sense of accomplishment, and that is so empowering for me. Kayaking has given me a sense of community. It’s given me goals. It’s given me accountability because I make plans with people and I have to show up. By the time I’m paddling, I feel better. I don’t feel pain when I’m on the river, which helps me live in the moment. Kayaking seriously saved my life.
Has your perception of the outdoor world changed?
I want people to understand that the outdoors is for everyone. I’m exhausted of people putting down those who aren’t elite. If someone wants to get out and kayak class II whitewater in a full-face helmet, let them. If people want to climb on a top-rope their whole life, let them. If people want to ride a full-suspension mountain bike on a rail-trail, let them. Maybe it’s super painful for someone to get moving in the morning and that full-suspension bike alleviates their joint pain. We just don’t know what other people are going through. I want people to be more supportive in the outdoor world because we know how good this is for our health and our well-being. I want people who have disease or pain or disability to feel welcome and be taken care of.
Any advice for other people who are struggling?
My hope in being open and sharing with people is that they don’t feel so alone. I want people who have a disease to be vocal and find support. If people didn’t know what I was going through, they would not understand how to support me. I don’t think that my illness or my troubles are any worse than anyone else’s. You don’t have to have a fancy diagnosis to be going through just as much as the next person. I’ve had a lot of people reach out to me like, “Oh my gosh, I’ve been going through these things; thank you for telling your story because I felt alone.” That encourages me to tell more people. I’m not trying to seek attention and I don’t want people to feel bad, but I do hope it’s inspiring for people who are in pain. I also really want more women to feel empowered. Even at 35 with kids and a disease, you can still get out and learn something new.
Check out Molly’s Work in-person by visiting Tamarack, or her website: https://www.mollywolffphotography.com.