Two Wonder Women With Scleroderma Share What Motivates, Challenges Them

If I were a vegetable, I’d belong in a 5-pound sack of couch potatoes. When I began my career in China in the 1980s, there were no movies, magazines, TV, or shopping. Working out was the only form of entertainment. I once went to the gym and met my future husband there. That was the last time I went to a gym. 

I could blame my inertia on scleroderma, but most of my reluctance to get out is attitude, not lack of ability. That’s why I was inspired to meet Susan Okuno and Kelly Clemeshaw, two Southern California scleroderma support group leaders and winners of the Scleroderma Foundation’s Janie S. Benner Memorial Spirit Award, given to people who raise awareness and help others with the disease. There is no mountain too high to hike or countryside too distant for them to traverse.

Okuno, 64, was diagnosed with diffuse scleroderma at age 50. A retired social worker, she and her husband, Richard, live in San Diego and have two adult sons. Okuno is a team captain for the upcoming 2021 Southern California Virtual Stepping Out to Cure Scleroderma event on June 6.

Clemeshaw, 46, was diagnosed with diffuse scleroderma at age 19. She and her husband, Braden, live in Escondido, California, with their two teenage sons. Clemeshaw worked as a teacher and now is home-schooling her sons. 

I recently spoke with the two about scleroderma, motivation, physical challenges, and other topics. Excerpts follow.

DCW: Tell us about a challenge you set for yourself.

SO: In November 2020, I decided to start hiking and made it my goal to climb Iron Mountain, which is a 5-mile rigorous hike. Previously, I had attempted it and barely made it out of the parking lot. I told my pulmonologist, and he was shocked. My post-visit note said, “Patient is considering climbing Iron Mountain!”

Well, I trained steadily, and on Jan. 21, with my oldest son, husband, and dog in tow, I did it! Granted, it was really tough, but I felt so accomplished that I could do this with my interstitial lung disease. Sometimes we can surprise ourselves if we look outside the box. So many people thought I was crazy, but step by step, almost anything is possible!

KC: In the summer of 2019, we decided to hike from Idyllwild, California, to the peak of Mt. San Jacinto. I was in pretty good shape and had been training for months, but I was still nervous about doing all 16 miles at a higher elevation. My husband had the smart idea to have my younger son and me start 45 minutes before the rest of the group. They finally caught up to us, and I was able to reach the summit in 10 hours. It felt really good to set a challenging goal, get over my initial fear, and be able to physically and mentally complete the hike.

Many people with scleroderma have some kind of physical limitation, yet you both are very physically active. What motivates you? 

Susan Okuno and her dog, Sasha, hike Iron Mountain in California, last November. (Courtesy of Susan Okuno)

SO: I’ve always loved traveling, but a few years back, I realized that my traveling days were limited, and it’s now or never. That realization gave me the drive to not put things off. Life is short. I have interstitial lung disease, and it is getting worse. As for exercise, it is the one thing that staves off depression.

KC: Since becoming a mother, I’ve noticed that my levels of anxiety have slowly increased. I find that the combination of being in nature and the intense exercise help my body, lungs, spirit, and mental and emotional state. I’m hoping to be around as long as I can to see my boys grow up and have their own adventures.

What advice would you give to a person recently diagnosed with scleroderma?

SO: When I was diagnosed, I was in tremendous pain, and I decided to force myself to walk, since I was going to be in pain either way. My advice to a newly diagnosed person: Walk, move, and exercise. I think it helped both my body and my mind. People with scleroderma who are in pain and don’t move are going to end up in worse shape.

KC: Your journey with scleroderma isn’t going to be like anyone else’s. Do your research, ask questions, get multiple opinions, advocate for yourself, love any caregiver or support you are blessed with, pursue joy, and stay hopeful. Scleroderma has given me the ability to cut out a lot of the BS in life and not waste time on things that really aren’t important. Give yourself permission to grieve the life you dreamed you were going to have, and then buckle your seatbelt for a wild adventure you never asked for.

The Clemeshaw family arrives at the peak of California’s Mt. San Jacinto in 2019. (Courtesy of C. Clemeshaw)

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June is Scleroderma Awareness Month, and many Stepping Out to Cure Scleroderma events will be held near you. Let’s get off the couch and Step Up!

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Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to scleroderma.