by Leah Messing
The New York City lights illuminated the street sign, and I felt my knees buckling as my cousin Ali and I approached Ludlow Street. Only a few more blocks until our first stop: a vibrant bar on the Lower East Side called Pianos. Yellow taxis zoomed by us as Ali’s friends walked a few steps ahead. Although my knees hurt, I wasn’t about to ask a twenty-something-year-old girl in heels to give me a piggyback ride.
Soon enough, we arrived at Pianos. After briefly waiting in line, I showed the bouncer my ID and followed Ali’s friends up the steep, concrete stairs covered in beer and cigarette butts. After surveying the bar, one of the girls suggested that we leave and go to Bowery Electric to listen to live music instead.
“It’s too early for this. There’s barely anyone here. We’ll come back later,” she said.
My leg started shaking out of nervousness. Although the Bowery Electric was located in the same area, I knew my knees couldn’t carry me there, so I turned to Ali and whispered, “Can you Uber with me?”
I felt bad for separating Ali from her friends. Not to mention, as an aspiring actress, she was on a tight budget. Spending money on an Uber to go such a short distance was wasteful, and her body language revealed her frustration.
“I’ll pay for the taxi,” I said. “Just please come with me so I don’t have to go alone.”
Ali turned to her friends and said, “You guys go ahead. We’re going to take an Uber.”
“Seriously?” one of them said. “Bowery Electric is only a fifteen-minute walk from here.”
“Leah has bad knees,” Ali explained. “Don’t worry, we’ll wait outside until you guys get there.”
I was frustrated by Ali’s friend’s judgment, but it was something I was used to. I tried so hard to find a solution to my knee problems, but it seemed like there was nothing I could do about them. Over the past three years, I’d been evaluated by over ten orthopedic surgeons at the best hospitals in the city, and while some offered varying explanations, none offered solutions. People would often ask me, “Is it your ACL or MCL?” I wish, I would think to myself. Then I could just have a standard operation with a quick recovery and my problems would be solved.
“No, it’s just the way I’m built,” I would explain. “My hips are very wide, so my kneecaps don’t track well.”
“There isn’t a surgery for that?” they would ask.
Don’t get frustrated, I would think. They’re just trying to be nice.
“No. The doctors have all asserted that surgery wouldn’t help and recommend physical therapy, but I’ve been in and out of PT for three years. I’ve seen six different physical therapists, and my pain hasn’t improved at all.”
PT was only one failed method of pain relief. From the ages of nineteen to twenty-three, I had experimented with pain medication patches, injections of cartilage lubricants and cortisone, daily doses of Naproxen, Pilates, orthotics, and knee braces. The lack of a viable solution should not be confused with a lack of trying on my part, but I didn’t want to have to prove myself to a stranger.
No matter who I discussed my knee problems with, it always put a damper on the mood and evoked a sense of pity from the other person. Listening to myself deliver this fruitless explanation depressed me, causing my frustrations to multiply and leaving me wishing I had never started the conversation at all.
Not having this conversation only left others more unaware of my condition: patellofemoral pain syndrome. The term refers to pain in the front of the kneecap that often diminishes quality of life for people of all ages. Whether or not I explained my condition to others, however, my knee problems followed me around the world. While in college, I spent a semester in Madrid. Although my knee problems made it difficult to walk for long periods of time, I was determined to make the most of my time abroad, planning as many weekend trips to various European cities as possible.
One weekend, I traveled to Barcelona with my study abroad classmate Grace. She budgeted fastidiously, loved to exercise, and planned trips with fierce intensity. She always had a precise idea of sights she wanted to see, foods she wanted to try, and the transportation needed to get everywhere.
Grace had booked our Airbnb in a five-story walkup with hosts who had exceptional reviews. She wanted to go out and explore Barcelona on our first night, but my knees hurt from the day of travel and I wasn’t sure that I could make it down the stairs and back up again.
“I’ll give you a piggyback ride!” she begged. “We’re in Barcelona! We shouldn’t stay in – we should go out and get tapas! I have so many restaurant recommendations that we have to try!”
My desire to please others combined with the guilt of not giving her the experience she wanted got the best of me. I wasn’t about to let a girl my own size give me a piggyback ride, so I walked down the five flights of stairs. I didn’t want to be known among the others in the program as the girl with the bad knees or the anti-adventurer. What if nobody wanted to travel with me and I never got to see Europe?
One day, at the bottom of the staircase, Blackberry in hand, I sobbed to my mom that I couldn’t make it up the stairs. The steps were wider and less steep than those in New York City, but it didn’t matter. When my foot made contact with each mosaic-covered step, I heard my kneecap crunch as if a pebble was stuck inside. I didn’t even have the guts to tell my mom that our apartment was a five-story walkup because I knew she would ask me why I was stupid enough to book it in the first place.
“I don’t know how I’m going to get along on the rest of the trip. Grace doesn’t want to take the Hop On Hop Off Bus with me. She made it very clear that she likes to explore cities by walking around because she needs the exercise.” I leaned against the railing and wiped the tears from my face. “And she doesn’t have it in her budget to pay for the bus. I think we’re going to have to split up. I don’t know why I even came here. I’m the worst person to travel with. I can’t do anything.”
“Calm down, Leah,” my mom said in her reassuring voice. “I’ll pay for Grace’s bus ticket. Don’t worry about it. This is your time to explore the world. Enjoy it.”
Relieved, I thanked my mom profusely and bought Grace and myself bus tickets the next day. I thought this would solve our problems, but Grace still didn’t seem happy. We had to wait for long periods of time before we could catch the next bus, interfering with our schedule. Also, we couldn’t even sit together on the bus. It hurt my knees too much to sit upstairs in the open air and enjoy the best views of the city, which she did not want to miss out on. I felt frustrated because I had tried so hard to make everything work without hindering Grace’s experience, yet it seemed like I was only complicating things more. I sat by myself on the lower level of the bus, the ache in my knees mimicking the ache in my chest as I thought about how I made such an undesirable companion.
The problems with my knees intensified when I returned to the U.S. I could only take handicap accessible transportation in New York City, and my commute was unnecessarily long because of this limitation. Several people referred me to Dr. Weingarten, the Hospital for Special Surgery’s specialist for patellofemoral pain in women. Given that The Wall Street Journal proclaimed this hospital one of the best in the world, I was hopeful.
“I need you to tell me everything that’s happened over the past three years,” she said, sitting in front of me in her white coat while her assistant took notes.
“I’m a twenty-one-year-old living like I’m ninety. I can’t even walk five blocks without pain,” I uttered before crying hysterically. I kept hiccupping, so she swiveled around in her stool and grabbed me a tissue.
“I’m sure your knee pain is difficult for you, but I need you to stop crying so we can get to the facts,” she said sternly.
Dr. Weingarten insisted that surgery was not an option. “Trust me,” she said, “I’m financially incentivized to operate on you. I make money from surgery, and I still wouldn’t recommend it because it’s not going to do anything.”
Dr. Weingarten’s only suggestion was to send me to another physical therapist who she claimed was the best in spite of being located an hour’s bus-ride away. “I know her office is hard to get to, but I promise it will be worth it,” she assured me.
When the physical therapy didn’t help, Dr. Weingarten suggested that the nerves near my knees were over-firing, making me feel pain out of proportion to my actual problem. Since patellofemoral pain can’t be seen on an MRI, some doctors made me feel like my pain wasn’t real and couldn’t be treated, which felt insulting and frustrating. She sent me to a pain management specialist, Dr. Rowland, and recommended that I receive a nerve block to calm down the nerve activity in the area.
Rather than thoroughly investigating this idea, I begged my mom to allow it because I desperately needed a solution. My mom reluctantly agreed, asking if she could fly up to support me during the procedure. Dr. Weingarten told me I would be in and out of the doctor’s office, as it was an outpatient procedure. I’d had about ten knee injections before, and they were all quick. Since my mom had been coming up for my seemingly endless appointments over the past three years, I didn’t want to burden her more, especially when I yearned to feel more independent.
On the day of the procedure, shortly after I changed into a hospital gown, blue socks, and shower cap, the nurse transported me into a room with an operating table and a huge circular device hovering over it while multiple medical personnel swarmed around with syringes, prepping the area.
Maybe I should have asked my mom to come, I thought, panicking. The other injections I’d had all took place in a small room in a doctor’s office – never a large room with sophisticated equipment.
Lying on the table, breathing deeply, I watched Dr. Rowland pull out a big syringe. He placed it into my thigh, and I screamed for the entire twenty seconds that the needle invaded my body, creating a deeply irritating, stinging sensation. Since the nurse did not give me adequate medication to sedate me, I felt everything. As a result, I flinched. The needle got too close to my nerve, causing nerve damage. For the nine months that followed, I constantly felt electric shock waves dancing up and down my right leg. They made it incredibly difficult to focus – especially while at work.
The procedure occurred only two weeks before I started my first job. Despite its negative outcome, however, I refused to quit. I was twenty-three and had worked tirelessly to secure an impressive job at a top international public relations firm. I loved walking into the tall, historic News Building in Midtown East, swiping my ID card and pushing through the turnstiles as I marched into corporate America. I had worked hard for this, graduating from the best women’s college in the country where our commencement speaker, a Nobel Peace Prize winner, had told our class to “step out of the shadows.” My classmates were going on to impressive jobs and graduate schools, and I was not about to stay behind in those shadows. Even though the nerve damage made me feel out of sorts and made it a struggle to get out of bed, I knew that it would be better for me to distract myself with work than stay at home wallowing in self-pity. Although my life was limited, I refused to let my pain consume my identity and prevent me from achieving my goals.
The following summer, I traveled to D.C. to stay with my friend Danielle for the weekend. As a political science major, ironically I had never visited the nation’s capital where all the lawmaking and policy decisions I had learned about took place. Danielle and I not only connected over our interest in political science but also our love of nightlife. So, when I finally had the chance to visit, she was excited to show me D.C.’s most historic monuments by day in addition to an active social scene at night.
While sipping on a Moscow mule during dinner, Danielle said, “Leah, we have to stay out all night and then go to the Lincoln Memorial to watch the sunrise. It’s the most amazing thing to see in D.C.”
So after a long night of metro rides and stops in Foggy Bottom, Georgetown, and Adams Morgan, we arrived at the bottom of the steps at the Lincoln Memorial around 4:45 a.m. From where we stood, I could see the nineteen-foot tall marble statue of Abraham Lincoln sitting in deep thought.
“Do you want me to give you a piggyback ride?” Danielle’s friend Joey asked. Although I’d only met him yesterday, I wasn’t going to miss this, so I jumped on his back and looked down at the white, marble steps as we began climbing. When we reached the top, he kindly kneeled down so I wouldn’t have to jump off and hurt my knees.
At that point, asking strangers for favors had become a part of my daily routine. I’d had to accept that, whether for the time being or forever, this was my life. There were moments when I didn’t want to travel anymore because obstacles appeared everywhere I turned. Not being able to rely on my own body was disheartening and demoralizing, but I refused to miss out on big life experiences during my twenties – which I envisioned as the defining decade.
I sat on the steps, rested my head against Danielle’s shoulder and watched the pale, orange and yellow sunrise smile over the city. As the shadows of D.C.’s historic building receded, I smiled at the realization that I could now only see the light.
Leah Messing is part of the New Voices Workshop. She was mentored by Lis Mesa, Head of TNVW, and Christa Burgin, Editor for The Selkie.