CW: medical talk, surgical talk, bones, car accident
In late May, an uninsured Lexus driver ran a yellow light and pulled in front of me in a busy intersection. I smacked straight into him at 45 miles per hour, crushing the front of my Toyota Sienna and activating the driver’s side airbags in a white-hot flash. A little tree off of Greenbelt Road here in Arlington, TX stopped me from flying into a ditch after I bounced away from the front of his car. I drive that way twice a week and thank the little tree every time I cross that intersection. I came away relatively unscathed, all told, except for a broken tibia/fibula combo. A titanium rod through my knee and ankle fusion later, I’m back in a familiar place: rehabbing from my latest setback.
I have a genetic condition called minicore disease, which is a sexy, relatively new, non-progressive neuromuscular disorder. When I was born, the brave doctors in Amarillo told my parents I was toast. No muscle tone, no reflexes, might as well have birthed a rutabaga. My parents didn’t buy it, which was nice of them. As a result, they got me into physical and occupational therapy early and often. Early childhood intervention likely bought me a degree of muscle development that saved my life.
Through years of physical therapy, I began to walk with a walker. Then crutches, Then nothing at all. Wobbly, maybe, but for a time I was ambulatory in the broadest sense. I’d still use a wheelchair for distances and crowds, but my little ass could book it without much support by the time I was ten years old. Then came the hip reconstruction when I was twelve, the result of an eroding socket common with neuromuscular disease. Then the broken femur, the result of trying to make a connecting flight as the doors were closing and flying out of my wheelchair when it hit a snag on the jetway. Then the scoliosis correction at sixteen, after which my torso would retain its keg-like silhouette until I’m dust in the wind. Then the soft tissue reconstruction of my right ankle, which was needed because of a foot drop caused by the hip reconstruction. Then it was the full left hip replacement, which I only agreed to do after my hip started dislocating roughly twenty percent of the time I’d stand from a sitting position. That procedure made my left leg an inch longer than my right. Then my double knee sprain. I gave some ladies in Charleston, SC a lunch they’ll never forget after racing down the sidewalk in my wheelchair, hitting a bump in the concrete, and shooting into their table like Kermit the Frog shot from a cannon.
And now we’re here. After all of these setbacks, something slips. It might be my standing stamina or the base range of motion of one of my knees, but it’s always something. This summer, the surgeon who repaired my broken leg asked me a tantalizing question in one of our pre-op appointments.
“Do you want me to break your foot while I fuse your ankle so it’s flat?”
This meant further manipulating the bones in my foot and ankle to create less of a curvature, forcing my foot flat when I had been walking on the side of foot for 25 years. It sounded like the right move and I still think it was, but, of course, it created a new issue. The leg length difference created by my hip replacement was exacerbated by flattening my foot, creating an ever bigger gap. I’m kind of relearning how to walk as a result.
It is the fifth or sixth time I’ve relearned it. Every step searching for flat, familiar footing. Every muscle group carefully in coordination to find terra firma.
I’m not quite looking into a mirror when I see Nate, the onesie-clad protagonist from Death Stranding-meets-QWOP game Baby Steps. I’m not as slovenly — though that gap is narrower than I’d like to admit — but Nate and I share the misadventure of unsure footing. Each step the player takes with Nate is clearly supposed to be a breath-holding affair. Pull a trigger and Nate will lift the corresponding leg. Move the left joystick to position Nate with his leg in the air. Make sure this is deliberate and quick, lest Nate lose his balance entirely and slide down a mountain. Or fall into a river. Or fall hundreds of feet from a winding staircase.
I’m never going to hike the wilderness like Nate. It’s not even on a big board of goals I have. I just want to be able to cook a large meal without having to take so many breaks it turns what should be an hour into three. I almost wish my boldest footing mistake would be careening down a mountain to the delight of Twitch chat, but really it’s just “am I going to catch my toe on slightly uneven ground in a parking lot and embarrass myself in front of strangers?”
It’s why, I think, it has been easy for me to take the reins and march through this hostile terrain occupying Nate’s grime-encrusted feet. The microchanges in sea level are immediately apparent to me, which means my steps are cautious but confident. The worst that can happen to Nate is he’ll feel my frustration through the screen. There’s never a deterioration, just a sharpening of the skills needed to get to the next campfire. My determination is never met with additional physical limitations from Nate.
Nate’s friction is so fleeting to me it is imperceptible, which made his early rejection of compassion and assistance particularly aggravating for me. After a moment, though, I get it. It has always been easy for me to reject the compassion of strangers. I’m not saying there’s never a moment where this rejection is appropriate, either, but most of the time the good people who see me try and fail to navigate the physical world are without fault. I began to see Nate differently after a while.
I have made and continue to make wonderful friends who make these periods of rehabilitation worth it. They ease my suffering and give me reasons to be out in the world. I’m lucky that way. I believed Baby Steps‘ not so subtle theme involving the perils of male isolation would be lost on me. I like people! My friends are great! I don’t have many hangups about what it means to be a man, I thought! After spending time with Nate and the many strangers met on the mountainside, I take my lesson. It’s okay to admit that these setbacks of mine have been hard. It’s okay to tell you that this cycle of rehabilitation has been frustrating. It’s okay to get out there and try even if I embarrass myself in front of strangers because friends always start as strangers.
<3