Color & Control:

Happy is a relative state

By Renée K. Nicholson

“The rest of my life will always be entwined with rheumatoid arthritis. But it’s my choice to also be something more, to not feel sick, to still find those shadows of a dancer, which is to say tiny flecks of magic, within me.”

Imagine, once you had been able to perform the splits in midair. Now, sitting in a doctor’s office chair, you’re shown an X-ray that confirms you no longer have any cartilage in your right knee. For years you’ve hobbled around with the aid of a cane, but now even that’s not an option. You have two choices. You either have a total knee replacement or you figure out how to get around with a walker or wheelchair. You are thirty-six years old.

One of the few times I’ve cried in public was that day in my rheumatologist’s office. I guess it wasn’t so public, but it wasn’t alone. I hate that I broke down like that, but finally I couldn’t keep my composure. My rheumatologist is a kind man with a no-nonsense way about talking about RA. The choices were limited, and I had to accept that. I already had, of course. By this time, putting weight on my leg was more pain than I could hide, and relying on a cane was not enough. I could barely walk, but I did, perhaps by sheer willpower, to get from one place to another.

Instead of telling me not to cry, my rheumatologist let the sobs flow until there was a break, and then he brought me into his office and called the orthopedic surgeon he thought was the best in town. He took such a personal interest in making sure I was going to do this thing I didn’t want to do. I think he knew I’d already decided to have the knee replacement surgery, but both my rheumatologist and the orthopedist gave me the option of calling back with a decision. I slept on it, but I didn’t toss or turn a bit. I knew I had to get the surgery, so first thing in the morning, I called and asked for the next available appointment. Once I made the decision, I was determined to get it done as soon as possible. No waiting around or mulling it over. Once again, I moved on quickly.

Though I was able to get in for surgery within a couple of weeks, I still needed a way to get around in the meantime, and so I found myself in a medical supply store, shopping for a walker. I wanted something basic, because I was hoping that I wouldn’t need it all that much—just pre- and post-op. Strangely, this view betrayed optimism I hadn’t dared to feel in a long time.

There were two elderly ladies in the store with me. One checked out a high-end walker with wheels and hand brakes like a bike. The salesperson had tried talking me into a similar model, but I wanted the cheaper one, without wheels, without bells and whistles. Basic worked for me. It seemed weird to think of walkers as having bells and whistles, but they do. The other elderly lady in the store bought a walker organizer—a fabric caddy with various pockets—that fits over the bar across the front of the walker so you can keep things like keys and cell phones handy. The lady suggested I also get a walker organizer. She showed me the fancy ones made of zebra-, cheetah-, and leopard-print fabrics. I decided right there I would just use a backpack or my pockets. It was too much for me to consider a cheetah-print walker organizer. It certainly didn’t seem fashion forward, and I’d only just accepted the need for the walker. I was not ready to give in to accessorizing, making the apparatus into a statement, not even when the salesperson asked if I might also like to see the giraffe print. Before my surgery, my mother came to stay with me to help with the day-to-day stuff around my house. She cooked, cleaned, and drove me to appointments. My father also came for regular visits, both to be with my mom, who he missed at home, and me, as I prepared for surgery. During one of these visits, Dad went to see the orthopedist with me. He always carried a small notebook and a maroon Montblanc pen, and he took notes on what I needed to do and what I could expect, all of the details that only partially sunk in as I sat in the white examination room trying to be brave, or at least to not look nervous. When my father asked the doctor what I would not ask—what were the chances of success?—the orthopedist told him he would do his best, but certain things were for God to decide. He did say he thought I would be free of pain, but there had been a lot of damage. He explained that many patients could do much more after surgery than before, and in spite of all the hope that had quietly slipped away over the years, I felt like maybe things would get better. Maybe I had to feel this way so that I didn’t feel like a thirty-six-year-old getting a surgery usually meant for a senior citizen.

And so I could believe it was, in fact, the best choice.

Happy ending
At this point, perhaps you’re thinking, yes, the happy ending is coming. This might make you sigh with relief, or become disenchanted with the story, feeling the happy ending wasn’t earned. There’s some judgment at the prospect of happiness, just as this entire story opens me up for scrutiny. Even though the surgery would help with the pain I had in my right knee, even though it partially restored what had been destroyed, it did not, of course, cure my RA. I never thought it would, and you shouldn’t think that either. I still have swelling, fatigue, fever, aches and joint damage. I can also get around
in a fairly normal way now.

Happy is a relative state.

Muscle memory
The night after my surgery I got very little sleep because I had intense pain. The night nurse had already threatened to catheterize me if I didn’t urinate, and so I willed myself to pee, only to be left atop a full bedpan. So things didn’t start off great that evening, and once the meds wore off, I felt like my thigh muscle was being slowly shredded with a cheese grater. My dad stood vigil by my bedside, getting only sporadic sleep in an easy chair. Luckily, I didn’t have to share a room with another patient. My father tried desperately to get the nurse to give me something for the pain, and perhaps she did, but I honestly can’t remember. I remember him holding my hand so maybe I wouldn’t feel so alone, and I remember squeezing because it hurt that bad.

Dancers build muscle memory from the day-in, day-out study of technique. Over the years, my thigh muscle had learned a new muscle memory, trying to pull my kneecap up from my deteriorating joint. My orthopedic surgeon told me that even under full anesthesia my thigh muscle would not relax at first—the only time he’d ever seen this. The muscle still tried to manipulate the kneecap to avoid painful grinding in the joint. The body’s ability to adapt to protect itself is quite remarkable in this way. Though my orthopedist finally did get it to relax, my muscles retained a dancer’s memory. What could have been a minor curiosity signified to me a small connection to my former self.

Gait retraining
After the first night things did get better, but it was slow going. My leg was strapped into a machine that helped stimulate the new joint by continually keeping it in motion, as if pedaling or walking. I could lie down as this happened or sit propped on pillows, and many times I’d get calls from friends, which were welcome distractions, as the machine churned my leg. I learned exercises I would have to perform daily and made arrangements for physical therapy. When I was released from the hospital, I was given strong pain pills, but within a few days, I stopped taking them because I wasn’t hurting so much, not compared to how much I’d hurt before the surgery, and I worried about becoming dependent on them. Pain, by then, was one thing I knew how to contend with.

In the weeks immediately following my surgery, I still needed the walker. My wound needed to heal, and I had to learn to walk again. I’d limped for so long, accommodating a joint that continued to fall apart, that my legs literally needed retraining on how to correctly put one foot in front of the other.

Dance had taught me how to train. So even though it took three physical therapists and some unconventional approaches, like a Pilates reformer and manipulation of the joint under anesthesia by my orthopedic surgeon, I finally made progress. First, though, a remarkable thing happened. As the wound from the surgery healed, I stopped hurting for the first time in what felt like forever. I felt nothing, and it was bliss. My father said he watched my facial features loosen and soften, too. He said I looked younger because I no longer carried the pain on my face. I didn’t know it was so evident.

That’s how it is
I’ve never regained full mobility with my prosthetic knee, but I’m able to do things now I thought I might never do again. Take the good with bad, the saying goes, or is it the other way around? The ending isn’t simply happy or sad. It isn’t really an ending.

This past June I had the opportunity to renew my handicap placard wheelchair parking permit. But as the date for this renewal came and slipped by, I’ve yet to have my doctor sign the papers I’d need to file at the DMV. I can walk from any space in the lot to where I need to go. I can walk without the aid of a cane. I can walk at a normal pace and move with relative ease.

Once a week I slip the needle of a prefilled syringe into the fleshier parts of me, dispensing medicinal liquid that helps to balance my whacked-out immune system. During the week, I spend several hours in a studio, in the presence of dancers as their teacher. Twice a day, anti-inflammatories. All this give and take, but I’ve found an uneasy peace. I’ve given you a version of my story, the best I have to give. I crafted it with words I chose and plucked so carefully, shaped through revision. I’ve given you this tale and you will decide what to make of it, what to make of me. I have no control over that. You may judge or feel or discount. Perhaps a concoction of all three. I accept that, once written, my story is no longer wholly mine. Still, I give it to you.

Today I am sick, and tomorrow I will be sick, as I will be every day until I die. I may not like it, but that’s how it is. The rest of my life will always be entwined with rheumatoid arthritis. But it’s my choice to also be something more, to not feel sick, to still find those shadows of a dancer, which is to say tiny flecks of magic, within me. Like anyone who is hopelessly in love, I will always be the keeper of a flame.

Excerpted from Renée K. Nicholson’s Fierce and Delicate: Essays on Dance and Illness, published by West Virginia University Press.

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