The longer I live with my RA, the further away, the more disconnected I become from my childhood with it – it’s like a murky dream I’m only 80% sure actually happened. It’s not that I’ve forgotten. Instead, I feel like my mind has gone to great lengths to protect me from the trauma I’ve experienced, suppressing the darkest moments.
Last Tuesday night I attended the kickoff party for this year’s Walk to Cure Arthritis. Before I spoke, I listened to our youth honoree, Brady speak about his experience with JRA. I welled up when he talked about his fear of being bullied for his arthritis which up until recently, he’d kept a secret from his classmates. A split second later my mind exploded with the memory of being called a “cripple” while my classmates pushed me violently into my row of lockers. My childhood memories of life with systemic juvenile rheumatoid arthritis are like that: Visceral. Stark. Shattering. When it was time for me to speak, my hands were shaking. Not nerves, but the aftershocks of a memory my brain was trying to shove back down into its rightful black hole.
Since its recognition as a mental disorder more than 30 years ago, post-traumatic stress disorder (PTSD) has been a diagnosis largely reserved for combat veterans and disaster victims, but growing research indicates that PTSD can also be a result of medical trauma, especially for those of us living with a chronic illness.
My first hip replacement almost killed me. At the time, surgery was expected to last three to four hours. Mine lasted more than ten. I bled and bled and bled some more. I was transfused repeatedly. My surgeon described my bones as “dissolving like sand” when he tried to touch them. They lost my heartbeat on more than one occasion. My family had to bear that trauma while all I can remember was the pain. I awoke in post-op recovery screaming. Begging for relief. Bartering with the universe in exchange for a reprieve.
Nobody did anything wrong. There was no negligence. All that my doctors did was to administer morphine based on my age and weight, but it wasn’t enough. It wasn’t nearly enough. The cardinal rule of pain management was broken – we got behind the pain and would spend months playing catch up.
But three months later, I was sitting in pre-op for hip replacement number two. I was 14. With my IV for anesthesia inserted and my clothes in a nondescript white plastic bag, I lost it. Memories of the hopeless, unrelenting pain from my last surgery came crashing down, and I told my mother, “I don’t want to do this.” She tried to reason with me that it would bring me relief, stability in the joint, and an ability to do things I’d been sidelined from for years, but all I could remember was the pain. She softened. She told me, “If you really don’t want to have surgery today, we can reschedule.” That was all I needed to hear. I yanked out my IV and began to get dressed. Before I could make my escape, my anesthesiologist and his team returned and intervened. I ended up having the surgery. This time, we got ahead of the pain. It wasn’t perfect, but worlds better than the first time.
Later today I’m going to see a new orthopedic surgeon for my hands and my wrists. Recent wrist x-rays show new bone lesions and increased narrowing of the joint space. In between the index finger and the thumb on both hands, there is a lump. A nodule. A pocket of fluid. A mass of soft tissue offering little explanation for its existence. It doesn’t always hurt, but when it does it’s the immobilizing type of pain, the kind that makes gripping a toothbrush almost impossible. Despite the success of the Orencia and other meds I’m on, these “lumps” continue to get bigger, more painful, and more visible. For my part, I’m constantly folding my hands in my lap to try to hide this newest deformity.
The last time I saw a surgeon for my hands, I was in high school. I was at the appointment by myself while my parents were preoccupied with their own respective failures. I had cysts on my wrists which needed draining. My surgeon also recommended cortisone injections since “we’re already sticking one needle in there.” I’d never had any other joint injections. No one asked where my parents were.
Because the wrist is such a small, intricate joint, the practice is (or at least was) to separate the joint to “make more room for the needle.” My surgeon called in two med students – one held my arm at the elbow, the other held my hand. When I realized what they were going to do, I second guessed the procedure. My surgeon patronized me, “If you’d like, we can give them ‘the bible’ treatment instead.” “What’s that?” I asked naively. “We hold your hand down and smash the cysts with a heavy book – like the bible.” I’m not entirely sure it’s not his fault I’m an atheist.
With my eventual consent, the med students took their respective positions and waited for my doctor’s signal. Moments later they pulled in opposite directions while my surgeon inserted a needle. I saw stars. Draining the joint brought a split second of relief while the subsequent cortisone injection quickly edged me towards oblivion. When they released my arm, I threw up on the floor. They asked me if I was ready for them to do my right hand. I told my surgeon I hated him. I wouldn’t return for another appointment for over a year.
The problem with this type of medical trauma is that it’s rarely recognized in a meaningful way by doctors, friends, or family, but its lasting effects are enough to keep patients like me from receiving critical follow-up care.
More than 15 years later, I can almost feel the exact moment at which the med students began pulling my joint apart. They’re older than I am at this point, and I’m sure that neither of them have given the procedure a second thought since then. Meanwhile, it’s all I can do not to bail on today’s appointment.