A teenager with joint replacements

Hanging in the hallway of my condo is a letter board with a message that I assembled myself: “YOU SHOULD BE IN A WHEELCHAIR.”

It’s a bit dark, I know, but most of the time I see it as more of a triumph than a taunt. And to live with a mobility impairment is to constantly be just that — taunted by it. Chronic arthritis taunts me from the moment I get out of bed every morning and take those first creaky steps every day. It taunts me every time I climb or descend a flight of stairs. Every time I lift a glass to my lips to drink. Every time I try with my gnarled hands to use a pair of scissors or pick up something I dropped on the ground.

It taunts me every time I open a door. Every time I pick up a pen and try to write in what was once my beautiful penmanship. Every time I step outside on an icky winter day and say a prayer that I don’t slip and fall and seriously injure myself. As for that sign in my hallway? That’s my way of taunting it right back every time I walk by. For despite the best efforts of raging autoimmune disease, I am not in a wheelchair.

It’s been quite a fight to stay that way, which is why I remember exactly what I was doing 22 years ago today On Dec. 18, 2000, I was undergoing total knee replacement surgery. They did both knees in the same operation. I was a child of only 16 years of age.

It wasn’t my first rodeo. Despite my very young age, I had already gone through a total joint replacement surgery in June of that year. I was three months out from having my right hip replaced when I told Dr. John Callaghan in September that I was ready to do my knees next. By then I’d been living with juvenile rheumatoid arthritis, a condition now called juvenile idiopathic arthritis, for eight years.

As is the meaning of the term “idiopathic,” we don’t know why my immune system attacked my joints so viciously. It started with the lining, called the synovial membrane. Then it went for the cartilage, then the bone itself. When I was 13, I started using an arm crutch to walk. By my sophomore year in high school, my right hip was bone-on-bone and had almost completely fused through a process called ankylosis. I would shove my bare feet into sandals even on snowy days because I couldn’t bend at the torso to reach my own feet. If I wore socks at all, it was because someone put them on my feet for me. Instead of leaning forward to rise from a chair, I would twist to my left, brace myself with my forearm on the back of the chair, and push myself up with my left leg.

Mere weeks after my hip replacement, it felt as if someone had just cut the pain out of my hip. Frankly, that’s because someone had. A joint replacement is the excision of the damaged part of the joint (a more polite way of saying they saw off the ends of the bones) and the attachment in its place of a metal (or ceramic) prosthesis with plastic bearings. My shiny new hip showed me that my version of “normal” didn’t have to include the suffering I’d experienced. The idea of a shiny new set of knees made me think that beyond that suffering might await freedom and mobility that only months earlier I couldn’t fathom. One might think that the decision to undergo such major surgery would be daunting for a 16-year-old, and that telling my parents and my surgeon would be difficult. It was the easiest, most effortless decision I’d ever made. When my mother and I left the clinic that day, I was beaming.

Of course, I wasn’t smiling when I woke up from the operation, because surgery still is surgery and I was still a kid in pain. Knee replacements are said to be the most painful of all of the joint replacements to recover from. (Having now had 10 joints reconstructed, I concur.) Nowadays it is common for anesthesiologists to use a “nerve block,” or an epidural to numb the surgical area much like that given to pregnant women in labor, to significantly lessen postoperative pain, but it wasn’t yet standard practice when I had mine done. Despite the hangover of heavy general anesthesia and the haze of a morphine drip, my memories of lying in that hospital bed for seven days are pretty vivid.

It was brutal. Beneath the bulky bandages wrapped around my knees were incisions measuring 10 inches in length, closed tightly with over 100 staples. Next to the incisions, tubes had been inserted to collect drainage in containers that the doctors would periodically have to empty. When they removed the tubes two days later, they pulled them out from underneath the bandages while I screamed in agony.

Having no ability to move them myself, my legs were each placed in a Continuous Passive Motion device, or CPM, which bent and straightened them while I lay there whimpering. In order to prevent blood clots, I was made to wear anti-embolism stockings and little bootees that would inflate to squeeze my feet. Physical therapy started right away, and aided by a clunky walker, a gait belt, and a team of physical therapists, I somehow stood on those tortured gams the day after surgery, voicing my elation with a protracted groan.

I was discharged from the hospital on Christmas Eve. It took both my parents and my grandfather to carry me up the stairs of our family home. We figured out the next day during our big family Christmas gathering that the best way to cart me around the house was to roll me in my dad’s office chair while someone held my legs. The high temperature was eight degrees that day, but I spent the day in shorts and a tank top, my skin hot to the touch from a rash that broke out from the antibiotic they’d given me prior to leaving the hospital.

It was a stressful time for sure, an exhausting experience for my whole family. But the recovery continued along, with day a little better than the last. Within a few weeks, I was walking with the same crutch I’d used prior to surgery. I happily returned to school in February. By mid-March, 3 months after surgery, I put the crutch in a closet and started walking for the first time in four years without any sort of aid. My dream of newfound freedom and mobility had been realized.

To this day, I walk unassisted on the same knee replacements that I had done 22 years ago. I’ve added a few more joints to the collection: Both my hips, both shoulders, a couple of wrists and an ankle. I’ve heard all the quips: “You’re the bionic woman!” and “Bet you have a lotta fun goin’ through security at the airport!” They jokes grow a little stale after hearing them over and over, but they never grow tiresome. I’ll take corny humor over pity any day.

That 16-year-old girl who went through that ordeal all those years ago didn’t have time for pity, either. I don’t feel sorry for her any more than I feel sorry for myself in the present as I still deal with significant limitations. I’m proud of her for going through it; proud to say that I was her, and proud to know that the person I am today grew out of that sassy and strong-willed teenager. As all adults are from their former adolescent selves, I am a completely different person than that goofy kid of 22 years ago. But I have one very important thing in common with her: I am not in a wheelchair. And thanks to her tenacity, I hope to remain that way for a very long time.

Comments: 319-398-8266; althea.cole@thegazette.com

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