Tears streamed from my eyes toward my ears as I sobbed, under my breath alternating between pleading, "pleasepleaseplease please" and devastated acknowledgement, "pain painpain pain." Eventually the sobs gave way to yells of terror, "THE PAIN GOD WHY THE PAIN?" Such was the scene at my apartment two nights ago, as my boyfriend looked on in helpless horror, holding my legs and hoping it would subside.
"Do you remember when you took the last dose of ibuprofen? Can you take more?" I couldn't remember and didn't want to make mistakes. "What about taking some Tylenol now?" I was loathe to take more pain killers; I had convinced myself that I was doing everything right and shouldn't need them anymore.
"I DID EVERYTHING RIGHT YOU BASTARD WHY? I go to pilates, I do yoga, I go to physiotherapy, I get massage," the yelling gave way to defeated sobs. I stopped long enough to suggest that perhaps this was my fault. "That's ridiculous," Ryan retorted, but in my mind I was thinking, "if only I hadn't been racing Michael. If only I had seen the car."
In July 2002, I was hit by a car while biking from the Media Lab at MIT to my home in Mather House at Harvard. I was 19 and around 10 PM on July 25, 2002, I learned what my teeth look like while lying in a pool of blood on the ground. I learned what it meant to fight with paramedics about being secured on my side so that I wouldn't choke on my blood. I learned what it meant to be yelled at by an infection-anxious paramedic the whole way to the hospital. I learned what it meant to see in a mirror the left half of my jaw shoved into the right side of my face. I learned how to stay awake for 36 hours and to fight with my family on the phone who wanted me to reject an absolutely necessary reconstructive surgery.
But it would be years before I truly understood what is going to be a life-long lesson: how to live with chronic pain. At first I thought the upsetting stuff was not being able to eat solid food for two months. Being afraid to get on a bike again. But that's not the scary stuff. The scary stuff is getting life-threatening bone infections thanks to the screws in my mouth. Eating with 10 fractured teeth completely exposed for over a year. Eventually needing not one, not two but three root canals. The way the reconstruction altered the bite in my mouth, eventually leading to debilitating back, shoulder and neck problems.
Which brings us to September 2010. For the last 8 years, the prospect of eating hasn't just been about satiating hunger. It's been about considering how much my jaw joint and teeth will hurt after the meal. For the last two it's been about how much time I want to spend removing that meal from my braces — when I could stomach the idea of putting my teeth through solid food at all. For the last 5 years, I have gone to physiotherapy regularly, fighting off knee problems, a moderate-to-severe bulging disc in my back, excruciating shoulder pain, waking up morning after morning and not being able to turn my head left or right without incredible effort. In the last 6 months, I've had a root canal retreatment that took 2 months to handle, about 10 x-rays of my head, and at least 6 trips to the dentist.
For me, keeping my calories and nutrition up is a daily struggle. In the last few months, as my orthodontic treatment accelerated and #16 struggled endontically — yes, I refer to my teeth by numbers now — my body succumbed to a mystery illness that I only recently discovered is reasonably responsive to regular, high doses of Vitamin B complex. The illness affected my ability to think straight, and I spent days, weeks and months staring at the ceiling, at my computer screen, willing it to do basic computations like remembering words, remembering how to do algebra, remembering how to be the near-PhD in physics that I supposedly was.
As of last week I am Dr. Prescod-Weinstein, but it hasn't been easy. And not because physics is hard. That was probably the easiest part. The hard part was fighting through the pain, the medical appointments, the pain killers, the tears, the bad memories and the neurotic anxieties to focus on doing physics. The hard part was standing for two and a half hours during my defense last week and needing to force my back to crack in the middle so I could focus on the examiners' questions. The hard part was and continues to be learning to love this struggling body, learning to care for it, learning not to hate it for having to struggle.
Most people don't realize when they see me or talk to me that it is likely that I am in pain. Very few have seen me let my guard down to cry out to a God I probably don't even in believe in because I have nothing else to scream at. But even when I am not paying attention to it, I am in pain. Those are the good days. The hard days are the ones where I have no choice but to pay attention, when I must stay stationary on a couch or in a bed with an ice pack, a steady supply of ibuprofen and acetaminophen, knowing that I will be unable to get any real work done. The hard part is, at 28, knowing I will have days like that for the rest of my life, and I can't control when they will happen.
Few people understand the prospect of a lifetime of painful eating, of constantly monitoring potentially cracking crowns, onlays and fillings. It's nuts when you're eating sushi and a significant portion of your tooth comes off in the middle of the meal, believe me. While I am thankful that more people aren't suffering, sometimes it's hard to suffer alone. This week is National Invisible Chronic Illness Awareness Week, and I am grateful to know that I am not the only survivor. I am also grateful to be reminded that I have a right to share this story, to not suffer in silence. If someone you know is in pain, let them know you're thinking of them, thinking of their struggle and grateful that they choose to persist despite it all. Chances are, you will totally make their day.
To the people who helped me get to hospitals, to root canal appointments, to periodontic surgeries. To the people who fed me and dressed me when I couldn't do it myself and moved my boxes and furniture because my body couldn't stand me doing it. To the people who made phone calls or sent emails and instant messages to distract me. To people who cleaned up my post-operative puke and held my hand while I cried. Thank you for helping me recover life, in spite of the pain.
{ 1 comment }
Hey Chanda
This is pretty powerful stuff, of which I only know a fraction. It makes me think of my Grandmother Jean that passed away this summer. She had very very bad arthritis from the time she was a older teenager until she died. From what I understand this was the kind of arthritis that most people would have been in a wheelchair. She walked until she died. She was dedicated to exercise and keeping busy to avoid the pain. I never realized the level of pain she was in every day of her life. I know that her arthritis is not the same as what you have been dealing with but your attitudes seem to be very similar. Life is not easy, why does it have to become harder?
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