So last Saturday, a bunch of us — family, friends, well-wishers — rolled out of bed bright and early, donned some jazzy orange t-shirts in the name of Team Spirit, and did a lap around Denver’s City Park with like ten thousand other people to raise awareness (and money) for the National MS Society in their annual “Walk MS” event. We raised a little bit of money, got my cousins’ kids out in the park for a while, and a good time was had by all.
My mom was diagnosed with Multiple Sclerosis in 1992. A nurse by profession, when she stumbled off of a curb in Santa Fe that summer she muttered to me, “Dang it, I hope I don’t have MS in this leg,” and she had her diagnosis by the end of the year. A lifelong Denver resident, forty-five years old at the time, she fit smack in the middle of the oddly specific demographic at greatest risk for contracting the disease, which for who-knows-what reason affects a disproportionate number of Coloradoans. She was an aerobics instructor and avid runner in those days, and was such a fan of bike rides that she rode the MS 150, a hundred-and-fifty mile fundraiser, for the first few years after her diagnosis, until MS robbed her of sufficient balance to stay upright on the bike. My sister and I rode it with her one year: Day One was so hot that the tires of our bikes actually sank into the asphalt on one memorable hill near Boulder, and on Day Two we rode eighty miles in the pouring rain in trash bags with arm holes ripped in them. For years after, we were largely supportive from the sidelines…
MS is one of those really exciting diseases that hits everybody differently. Some people contract a relapsing/remitting variety of the disease, and can go for years between symptom flare-ups (or for long years between remissions). Other cases, like my mom’s, are classified as “progressive,” which means there is always hope that one’s symptoms won’t get worse, but essentially no chance that they will ever get better. My mom hasn’t run since her diagnosis, her aerobics days ended abruptly, and she hasn’t had the balance for a two-wheel bike in fifteen years. She walked with a cane for several years, then two, and now does best with a walker; for long hauls like the zoo, the mall, and the airport, these days it’s pretty much use the wheelchair or stay at home. When my niece was a very little girl, if my mom was in one room of the house and her cane was in another, Arden would drag the thing — twice as tall as she was — to her, having observed that where my mom went, the cane necessarily followed. I have had moments where one of my biggest resentments towards the disease has been the fact that my niece and nephews will never know Active Grandma. She never chased them around the house as toddlers; they never saw her run a race; she’ll never go with them for a bike ride or a swim or a walk in the woods.
But my mom has never taken any shit from her disease. Her kids were grown; had she wished, she could have curled up into a corner with her diagnosis and pitied herself into a wheelchair by age fifty. (It happens.) But, while her specific case of MS has been relentless in its progress, so too has her refusal to give an inch to it. When she couldn’t balance herself on her bicycle on the street or in the park, she took to the pool, and started riding a stationary bike in the water; she can’t teach aerobics anymore, but she goes to pilates and yoga every week; her running days far behind her, she still walks every day, even if it’s only to the bottom of the driveway, so that her legs remember how. For twenty years, Multiple Sclerosis has fought like hell to get the best of her, stepping up its attacks year after year, and she retaliates at every turn. And if she finds that a weapon, like maybe the underwater bike, has dulled, she unsheathes a new one, like her big purple trike, and wields it with all she’s got. Her MS continues to advance, but she has not given it so much as an inch, and when it forces her to fall back, she rallies to defend her new position.
That’s a big part of the reason I kept myself on task to organize a team for the MS Walk this year: three miles is a lot more than my mom can walk, but for the rest of us it was a relative cinch — I did it in flip flops — and if she can show up for the fight against MS every day, then I can sure as hell show up for it one Saturday morning. Not everyone who walked with us raised money this year, but I encouraged every one who wanted to to come and walk with us anyway, for there is strength in numbers, and I hope that for anyone living with MS, the show of support in bright orange t-shirts might serve as an inspiration, come a day when inspiration might otherwise be in short supply, to fight on. And on this Mothers Day especially, it occurs to me that to mourn the grandmother that my niece and nephews “will never know” is a self-indulgent and pointless exercise, when the grandmother that they do know sets this kind of an example. As much as we may wish it for them, any expectation we may try to instill that Life is Breezy and Obstacle-Free will eventually tatter, if hopefully only a little bit. Problems arise, be they big or small, and my mom’s grandkids have already learned that these problems don’t get to be in charge unless we let them. They have learned that even if you need help from a cane or a walker to stay on them, getting back on your feet is always an option. Their lives are filled with people who run and ski and play lacrosse, and their favorite uncle has a mild obsession with Michael Phelps — they will have ample opportunities to learn from the Thrill of Victory. And their grandmother shows them just by getting up and coming down the stairs every day that Defeat can fuck off. I do not pretend to know what she might have wished for hers to be, but as legacies go, she could do a lot worse. My gratitude for a crack at finding a place for myself in this fabulous mess that we call Life is immeasurable, natch, but this Mothers Day I write to thank my mom for a much bigger gift. You deserve your Best Life, she has taught us, and it’s worth fighting for. So go get it.