The Sugarbee Effect

I don’t remember the first time someone told me I looked just like my Aunt Kelly. It’s happened often enough that I’ve internalized it. I don’t mind; she is beautiful, and so I consider it a profound compliment. 

I’ve never had to try to look like her—when I got married and she offered to give me her wedding gown, it fit perfectly the first time I tried it on, no tailoring necessary—but that is, unfortunately, where our effortless similarities end. In personality, I have to work hard to be more like my aunt.

wedding
I was the flower girl at Kelly’s wedding. When she offered to give me her gown (the only one of its kind, designed and handmade by a friend of hers) twenty-two years later, I was thrilled. It fit perfectly the first time I tried it on.

When Kelly, my dad’s little sister, was in her early twenties, she was diagnosed with Multiple sclerosis, or MS. The disease causes the body’s own immune system to attack the coating that protects nerve fibers (picture the plastic covering on the wires that hook up your TV or sound system; if it disappeared, the effect would be similarly unpredictable and calamitous). As the central nervous system deteriorates, people with MS experience numbness and tingling, fatigue, and difficulty walking, seeing, or speaking.

Symptoms don’t always advance beyond that, but in Kelly’s chronic, progressive case, the disease forced her to use a cane, and then a walker, and, eventually, a wheelchair. Now she’s in it full-time.

My favorite picture of Kelly was taken when she was close to the age I am now. She’s dressed for a hike. Her million-watt grin is framed by her jet-black curls and she is leaning into a gigantic hunk of granite. It’s one of those cheesy trick photos, like when tourists pretend to prop up the Leaning Tower of Pisa, but it’s fairly convincing. Someone caught me admiring it, as a toddler, and told me that she’d really moved the boulder all by herself. I spent most of my childhood believing that to be true.

It wasn’t a big stretch, anyway. Kelly had been a star athlete in high school and college. Her childhood bedroom at my grandparents’ house in Lakewood is filled with photos and ribbons from track meets, including a Bolder Boulder where she finished eighth in the citizens’ race. When she was diagnosed in the late 1980s, she was working as a fitness instructor and was about to embark on a master’s degree in exercise physiology. The woman does not lack strength.

Sometime not long after Kelly learned she had MS, my parents and two uncles (Kelly’s husband and her other brother) learned about a local bike tour that raised money to fight MS. We are generally a supportive bunch, the Walkers, so they signed up and rode the two-day, 150-mile tour in cotton t-shirts on mountain bikes. The photos of their motley crew at the finish that first year paint a pretty telling picture: they look maybe a little proud that they’ve finished, but mostly sweaty and exhausted. None of them could have known what Kelly’s battle with MS would look like over the next quarter-century.

bikems
The four original members of Team Sugarbee. A lot of things have changed in the quarter-century since this was taken, but all four of them (plus, these days, dozens more people inspired by Kelly) still ride.

Since that first year, the MS-150 (now called BikeMS) has become a family affair. Their team—Team Sugarbee, it’s called, an homage to Kelly’s childhood nickname—grew until it was the largest non-corporate team on the regional ride. My grandparents, along with dozens of friends and family members, volunteered to run a rest stop on the ride each year for nearly two decades. The Sugarbees were also the first friends-and-family team in the country to raise a cumulative $1 million to fund MS research.

My dad, the team captain, will tell you that he doesn’t mind the work of organizing the team one bit—the fundraising, the phone calls and emails and, of course, the training for the annual bike tour. He is not alone in that sentiment. You should see the way people react when they meet Kelly, and it makes sense because she is nothing short of inspiring.

Each year at Team Sugarbee’s tent at the finish line, dozens of people form a receiving line. Some people want to thank her for role modeling positivity and levity; others, because she is also an excellent listener, want to tell her the story of their own battles with MS. Everyone, as far as I can tell, is honored to be in her presence.

Because I do not possess the same strength of character and gentleness of spirit Kelly does, I feel a little defensive when I hear her admirers talk to her about their own troubles. It’s hard for me to wrap my head around complaining about little things—sprained ankles, annoying coworkers—to someone who’s experienced such physical and emotional hardship.

But Kelly doesn’t seem to see it that way. She is capable, without pretense or judgment, of simply meeting people wherever they’re at. She sees their good qualities and forgives their less flattering ones. She remembers their birthdays and anniversaries and graduations and big presentations at work. She calls to congratulate them when they get promoted and to wish them well when they have surgery and to express her sympathy when their pets die. And she means every word of it sincerely.

I think the words “amazing” and “inspiring,” often employed to describe nicely presented foods and significant others who do appear to be doing the bare minimum, are terribly overused. I am petty and somewhat pretentious about word usage, and so I do my best not to use them. But there is no getting around it when it comes to Kelly, who really does amaze and inspire me with her patience, kindness, and apparently infinite optimism, even when so much has been taken from her.

In my worst moments, thinking about what MS has stolen from my aunt makes me want to kick and scream. This is bullshit! I think, It’s not fair! And it’s not. But what’s to be done about fairness? Kelly is, to my continual amazement, both philosophical about the challenges wrought by her disease and grateful for the unending support of her friends and family.

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The Walker family resemblance is strong.

I have a tendency to shrug off whatever’s bothering me (or at least feel guilty about letting it get to me) by reminding myself of the suffering of others. I don’t necessarily think that’s the lesson here; I hate to sound this self-actualized, but we all have to live with our truths, whatever they are.

Each year on the BikeMS tour, my dad waits until everyone’s really hot and cranky and says, in the characteristically chipper tone I did not inherit, “This hill will end, but MS doesn’t.” And then he will merrily pedal uphill while I contemplate patricide. (Kidding!)

I never want to hear it in the throes of the 70-odd mile ride to Fort Collins, during which it is always at least 90 degrees, but I think I know what my dad’s getting at.

Kelly’s having MS doesn’t mean no one else is ever truly suffering, of course. It just means it wouldn’t kill me to pull my head out of my ass and think about the bigger picture and, when possible, do something about it.

If you are interested in learning more about MS and the ongoing research to predict, treat, and cure it, visit the National MS Society website here. Shameless plug: You can also donate to Team Sugarbee through my fundraising page
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