On a Bicycle.

Built for one.

(Reposted from Jackie's Substack Willable.)

My first bike had a banana seat. If you know that I spent a lot of my childhood with an 80s spike haircut, that seems wild. But it’s true. It was a blue Schwinn, with a speedometer. And for my birthday, I got a basket to put on the front. It was on that bike in our church’s parking lot that I learned how to ride without training wheels. Once I started pedaling that day, I never looked back.

Me, in all my glory, on the farm with only my older brother who was into BMX bikes and making his own dirt ramps. I definitely learned how to perform stunts (not on my Schwinn), but I also loved cruising around with junk mail and pretending I was a mailperson (mind you, we lived off a gravel road seven miles outside of a small town, there were no USPS mail trucks buzzing by).

After that bike, I went through a lot of my brother’s hand-me-down wheels. It was on one of his bikes where I learned the grave difference in using a front or back brake. I was pedaling as fast as I could down a steep hill when I lost control and jammed the front brake. I flew off and drug my face across the scoria until I stopped on a good-sized rock. After a few stitches between my lip and nose, and some in my finger, me and my spike were good as new!

A few years later, I won the grand prize for the Diabetes bike-a-thon: my own coveted ten speed. I slowed down my ramping and adored that pink and purple bike with gears.

All through fifth and sixth grade, my tiny, bestie friend, Ashley, and I would steal her sister’s bike to go get Peachies and cappuccinos at the convenience store. Our trips were on Wednesday evenings while our siblings were at church school. I pedaled and she rode on the seat. We took great pride in looking like Dumb and Dumber (and in chugging late night gas station coffees!).

Somewhere around my sophomore year of high school and under the influence of my friend Kristy, I decided basketball wasn’t enough, and I needed to cross train like I was doing triathlons. I had already begun running, so I added in longer bike rides and became more serious about weights and my beloved swimming. I borrowed my dad’s blue Huffy and started biking the square around our farmstead. Two parts gravel, one part paved/county road, and one part dirt road between fields and pastures. To the tune of twelve miles. Five days a week.

If I could go back to any point of my life, those hot, dusty, long rides around the rolling plains of southwest North Dakota would be honorable mentions. I have always loved biking!

Right before Christmas, during my junior or senior year of high school, the UPS man delivered a huge box with a return address that led me to believe it was a bike. I was home with my little brother and assumed it was a gift for him, so I made up a story to divert his attention and waited for Mom to arrive. When I tried to whisper - “David’s bike came!” -  she had no idea what I was talking about. To all of our surprise upon opening it, it was a brand new, Huffy, adult-sized, road bike. There was nothing else inside, and based upon the “Got Milk” decals and brown cow spots, we assumed I’d won a drawing I entered (using Mom’s name). This was amazing news for me, because I’d already beaten the holy hell out of Dad’s bike.

Fast forward about one week later, and the UPS man once again delivered the same bike, in the same box, from the same return address. I now had myself TWO brand new chocolate milk bikes! (I truly believe all of my good luck came and went in the span of those two weeks.)

I mostly stored one in the shop and pounded the other to smithereens over the next few summers. When I moved off campus my junior year of college, my parents brought me the “newer” bike, and that became my ride. I had traded in the trail rides for pavement, but appreciated saving gas money by biking and walking to campus in ten to twenty minutes. I rode that bike so much, I made jokes about putting chains on it so I could keep riding past the first snowfall.

My friend, Sam, a football player (not a dummy), lived with a few of his teammates (dummies) in a house not too far from our apartment. He also walked to and from class, so I’d hassle him about politics and life when we met on the commute. One time, I stealthily rode up behind him to scare him, and he barely even laughed at me. “I heard you coming from a mile away on that piece of crap!”

Apparently, my free bike was violently squeaking, and on its last leg. So I devised a plan: I worked my tail off that summer and made enough money to buy the most beautiful bike I’d ever seen. I paid $350 for a purple and grey, Trek, mountain bike, and I’d never loved anything like I did that glorious ride. I took care of it like it was my baby. I rode it to class, the law library, on the gravel roads when I was home, serviced it, and stored it inside my apartments. It biked me through stress relief during bar study, and with Sean, as he hauled two small humans in a bike trailer around various campgrounds.

About a year before I got sick, I upgraded (downgraded?) to a blue, old lady, Trek bike, and parked the trusty mountain bike in the garage. I had trashed legs and the back of a person who sat at a desk eighty hours a day, so the days of twelve-mile tours were out, and light street biking was in. And of course, I was on my way to a medical hellfire …

Early in my AE-recovery, I turned to Sean’s recumbent bike in the basement. I’d always preferred to bike outdoors, but needed something for light exercise. As I became a bit more comfortable walking alone outside and basement biking, I asked Sean if he’d turn my blue bike into a stationary one in the garage and that about did it. Since I could barely meet my basic needs and was extremely unsteady, he said OH NO HELL NO! So I kept to the indoor bike.

After my year of recovery, I was able to use ol’ blue again, but the steroids had wreaked serious havoc on my knees. And in 2021, I attempted way too long of a ride, way too soon in the summer, and felt knee pain that I thought meant a torn meniscus. While it wasn’t torn, there weren’t many options for medical intervention. I began a long battle with predominantly my right knee and struggles in my left. The pain made the rotation of a bike nearly impossible, whether outside or on a stationary.

No hyperbole, I was crushed. I could no longer bike. It was one more big thing in my growing list of one more big things I’d lost.

A few years later, my eldest daughter outgrew her bike, so I begrudgingly let her use my hard-earned mountain bike. And my son begged for his own Trek bike. With bigger tires and older leg muscles, they embarked upon longer rides with Sean, who was once again towing a small person in a trailer. And I bitterly walked very, very far behind.

For years, I tortured myself with, “Should I just sell the blue bike? Why am I keeping that hanging in the garage?”

I couldn’t even bear to imagine the larger question of, “Will I ever be able to bike again?” so I stuffed it down and ignored it. I didn’t dare get my wishes up for the fear of never again crushing me. Yet something deep inside of me wouldn’t let go of the bike on the rack. For some reason I held onto it, and possibly, a little bit of hope.

Never say never. Just like in Unwillable where Sean and I almost took measures for permanent birth control, but couldn't allow ourselves to say never, because something just didn’t seem right. It was as if God and the universe were telling us to stay open to a different future than that in which we had planned.

Of course, that future turned out to be a miracle baby hardly two years after my AE-onset.

Last spring, that little miracle turned five and began riding a big girl bike. Looking so much like her momma in a hand-me-down boys bike, with pegs and training wheels, she began tearing down the sidewalks. And I decided then and there, I had to do whatever it took to be able to bike with her. In Kate Bowler’s words, I had to try to try.

When I was doctoring after the initial knee injury, Dr. Juelson offered me an unloader knee brace to see if it would help. Either I wasn’t ready or was too fearful for it to flop, so I declined. Until last May, on a wing and a prayer, I went back to his office for an injection and brace. I swore that I would bike with that little terror who pedaled like a wild-haired girl on a farm in the 90s–and I did.

Thanks to Dr. Juelson’s (orthopedic surgeon) wisdom and Mike’s (orthotics) hard work, they fitted me with a giant-ass brace and I biked in it all summer. On short rides to the park, long rides with the entire family, and accompanying rides to summer school. And just like that poor college student with frozen hands who bragged about riding her squeaky-milk-bike up to the week of Thanksgiving her junior year of college, I took ol’ blue for her last spin of the year on November 23, on a fifty-plus degree North Dakota fall day.

Never say never, JM Stebbins friends. Be realistic about constraints, but do not ever give up hope for change. With love, patience, faith, counseling, perseverance, medication, meditation, medical care, pauses, pain, accommodations, and hope, what once was Unwillable, just may turn Willable someday.

Pass it on.

Luv, jackie

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/ / The JM Stebbins blog is an autoimmune encephalitis blog from former lawyer and autoimmune encephalitis survivor, Jackie M. Stebbins.

Jackie M. Stebbins is also the author of Unwillable: A Journey to Reclaim my Brain, a book about autoimmune encephalitis, resilience, hope, and survival. //

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