STILL MOVING

STILL MOVING
Redefining Strength with MS
Exclusive Interview with Cheryl Hile
Featured in 'Innerviews'
Hosted by Allié McGuire

​MS has a way of taking things without asking, including the futures we once counted on. For Cheryl Hile, that meant surrendering a career, relearning her body, and choosing movement in a world that kept telling her to slow down. This conversation traces her journey from diagnosis to defiance, and how she turned personal loss into collective purpose through every step she continues to take.

ALLIÉ: Let’s get in the way-back machine. Cheryl, can you take me back to the moment? We all have a moment. All of us with MS have that moment when MS entered your life in a way that you couldn’t ignore anymore. What did you lose first? Certainty, trust in your body, or the version of yourself you thought you were going to be? Take me back to that moment.

CHERYL: I was diagnosed in 2006, but prior to that I had been running marathons since the year 2000.
In January of 2006, I ran my 13th marathon. It was my fastest time. I was just so elated, so happy. But the very next day I started experiencing electric shocks in my right arm. I went to my doctor and he said, “You probably just pinched a nerve. It’s a sports injury.”

CHERYL: (continued) We masked it with nerve-numbing medication and it seemed to get better. But as time went on, the electric shocks returned with a vengeance. I was not only in pain in my entire right arm but also the right side of my back.

I was finally referred for an MRI. The MRI showed innumerable lesions in my brain and two in my cervical spine. That’s when I was diagnosed with MS.

Being a marathon runner, even my doctor and I were both really shocked. I was 32 years old. Back in 2006, MS seemed like a disease that affected older people and certainly not marathon runners.

At work, the only other person I knew with MS was my coworker. She was older. She was in a wheelchair. The hardest part about it, and what I felt like I was going to lose, was my physical ability.

She was also always tired at work. She would make a lot of mistakes and she worked part time. When she went home, my coworkers and I would correct her mistakes. I was also worried about losing my cognitive ability.

I thought I was going to lose everything.

But my husband is the one who got me into running, and he encouraged me to keep exercising. I realized that the endorphin rush from exercising lifted my spirits and made me feel better.

I’m a little bit crazy. I just completed my 79th marathon.

ALLIÉ: Wait, wait. I mean, okay, sorry. Seventy-ninth? What?!

CHERYL: I was afraid to lose my ability, so I started registering for a lot of races. My husband is so supportive of my racing, and I just kept the ball rolling. I kept registering for races. I kept running.

I did start tripping and falling because of foot drop, and that was another low point in my MS journey. I didn’t think I would be able to keep running.

Thankfully, I was able to find the right medical care and an orthotist who outfitted me with an ankle-foot orthosis. Through that device, an AFO, I was able to keep running.

Here I am today finishing my 79th marathon.

But MS is hard. I’m older now. I’ve been diagnosed for almost 20 years. My whole right side is dragging more. It feels heavier. It’s harder to lift. Just last summer I started having problems with my good left foot.

In the last marathon that I ran, I did have that fear that I would trip and fall on my good foot. In a sense, I have almost become like my coworker because I am tired all the time. I eventually went to part time, like she did, to try to remain in the workspace.
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CHERYL: (continued) I was devastated to know that my friends and coworkers were correcting my mistakes when I went home. This is coming from a person who loves to do her homework.

I love spreadsheets. I was doing accounting. To know that I was making mistakes when I had been employee of the year for efficiency and managing huge contracts was devastating.

ALLIÉ: I’m so glad you went here with this part of your story because that is what I wanted to shift to next.

When we spoke the other day, you shared with me that MS forced you to surrender your career, not because you weren’t capable or qualified, but because what was happening with MS made it so you could no longer do what you once did.

What did it feel like to grieve something so deeply tied to your identity? Who you were, what you were, and how you showed up in this world, knowing the competitor wasn’t outside of you, it was within you.

CHERYL: I cried like a baby for a year. Is that okay?

ALLIÉ: You can definitely say that, and I will cry with you.

CHERYL: My work was part of my identity. I was the super-efficient, motivated accountant at work, nice to everybody, mentoring others so they could rise in their careers. Then suddenly I was the person who went home and people said, “Cheryl made this dumb error. We have to fix it before accounts go even more in debt.”

That was devastating to hear. I grieved that for quite a long time. It’s been about eight years now and you can still hear it in my voice. You can hear my sniffling. It still shakes me up.

ALLIÉ: For sure, and understandably so. Being part of your identity and part of what you worked for that you didn’t give permission for someone to take away from you.

MS doesn’t play by the rules. It cheats us out of a lot of things and it doesn’t offer rematches. How did you mentally and emotionally adapt when you realized that this was a race where effort alone wouldn’t always determine the outcome?

CHERYL: Besides running and doing races and working on the physical things I could manage, the real turning point was becoming more involved in the MS community and helping others.

Sometimes being a bit over the top, I decided that I wanted to be the first person with MS to run seven marathons on seven continents, all in one year.

When I told my husband Brian about it, I made sure we were in a beer garden and in a good mood before I sprung it on him. He said, “Okay, let’s do it.”

Through that year-long adventure I met a lot of people around the world with MS who were runners or who wanted to become runners.

I didn’t want that adventure to end, so I created a team called Run a Mile in My Shoes. It included all the people I had met throughout that seven-marathon adventure.
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​CHERYL: (continued) Now we’re this dynamic support team where we help each other, embrace each other’s activities, and encourage one another to move and exercise in whatever way we can.

Creating that community has healed me in a sense because now I can put that energy toward helping others. That is what is most meaningful to me about this disease. Because of this disease I can meet amazing people like you.

ALLIÉ: We wouldn’t be having this conversation today had it not been for this dreadful disease. It makes me think of Damien Washington who once told me, “MS is a terrible way to meet wonderful people.”

You’ve used this terrible thing not only to meet wonderful people but to support and serve them. And for heaven’s sake, Run a Mile in My Shoes. Being the word nerd I am, I geeked out for a quick minute when I heard that.

CHERYL: Thank you. I love my team. They’re so supportive.

We’re not all runners. Some hike, some cycle, some paddle. It’s any sport, any type of exercise. It shows the importance of movement, helping those neuronal connections and giving you that endorphin rush to keep yourself strong and positive throughout the day.

We all have daily struggles with MS, but knowing we can move our bodies in any way possible helps us get through the day, the week, and the month.

Having goals also helps. My team is meeting in Portland, Oregon in October for a marathon, half marathon, and 10K. We also have a virtual component where people around the world will do something in solidarity with us.

Having that goal to strive for gives us motivation to keep pushing onward and doing whatever we can.

ALLIÉ: With MS or any chronic condition, when you have an incurable disease that can be debilitating, it can be frustrating because no matter how hard you push you will never be the person you were.

You have to accept that you can only be the person you are and the person you are becoming.

For those who feel like they don’t know how to move forward and are missing previous versions of themselves, what advice would you give?

CHERYL: A lot of it is about finding joy in the things you’re doing. There has to be recognition that you need to evolve and reinvent yourself. For me, marathoning is harder now. Even running with my ankle-foot orthosis, I worry about tripping over my good left foot.

I’m in the process of reinventing myself by shifting my focus to running 5Ks and half marathons because I still find joy in running. The training for those races doesn’t exhaust me for the entire day.

It’s important to evaluate what brings you joy and create new goals within that new space. Thinking about a half marathon in another country gives me something positive to look forward to and something to strive for.

​CHERYL: (continued) It doesn’t have to be a full marathon to give me joy.

I’m not giving something up. I’m moving forward. I’m transcending that space.

ALLIÉ: That makes complete sense because what I’m hearing is that you’re not giving something up, you’re taking control. You’re taking care of yourself and choosing what works for you now.

What I love about you and your journey is that your running career started with struggling to run around the block.

CHERYL: My husband loves telling that story. Brian’s first race ever was a marathon, so my first race had to be a marathon too.

He took me out on a training run around a cul-de-sac. I couldn’t even make it around the cul-de-sac. It wasn’t even a block. I was panting with my hands on my knees.

I had already spent money on race registration and thought, as an accountant, I just wasted money. Then I thought, no, I’m not going to waste this money. I’m going to suffer and do it.

ALLIÉ: What that says is that at every point in our lives there are different measures of success. Success once looked like running a marathon. Today success might look like going around the block and not being winded.

We all have different measures of success, and we have the choice to define what success looks like where we are right now.

The work that you do helps people meet themselves where they are. For that I want to say thank you. Thank you for all the work you’ve done and continue to do, and for helping all of us become a bit more aware now.

CHERYL: Thank you, Allié. ∎

Learn more about Run a Myelin My Shoes (RAMMS): runamyelinmyshoes.org