Imagine if the left side of the bottom of your jaw was crushed into your mouth, with one tooth wedged under your tongue, and the right side had a fracture straight down the side. Ten other teeth are missing pieces. That was me in the summer of 2002, just a few weeks before I turned 20. Unbeknownst to me until 12 years later, I also had a fractured glenohumeral joint — my left shoulder was broken. It healed without treatment. My jaw was repaired with titanium plates, which were (likely unavoidably) screwed into the roots of multiple teeth, which lead to all of them becoming necrotic later. [IMAGE: a full panorama X-ray of a human mouth] (source: Wikipedia)

A Life, In Spite of the Pain

Six years ago, I wrote the following note on my tumblr about my struggle with chronic pain and massive dental work in the wake of a major car-bicycle collision when I was 19 (see the caption above for details). It’s a really good thing that nobody told me when I wrote it that six years later, two days after my birthday, I’d be getting braces again. Or that I wouldn’t be able to eat at any of my birthday/anniversary celebrations the week previous because the orthodontic prep had left me in excruciating pain. It would have, on the other hand, been nice to hear that I would find the financial resources to get involved in doing Classical Pilates, to become a trained Pilates instructor, and in a very serious way to break the cycle of the back and neck pain I was experiencing back in 2010.

But: in the six years since I wrote this essay, I’ve had a root canal almost every year, usually around the holidays when other people are getting some down time. I’ve learned that my shoulder was broken in the car accident and Mass General Hospital’s ER missed it; I’m lucky that it healed ok, but my tendons are probably compromised for life. I’ve learned that one of my teeth is resorbing and will need to be extracted and replaced with a prosthetic, that it is constantly under threat of snapping in the middle of dinner, whether I am at a job interview or on vacation in a country far from my dental team. I’ve learned that having the right connections is key to getting the right dental care because almost no one in the country knows how to handle a case like mine; I now have a treatment team that includes some of the most well-respected teaching specialists in the country. I’ve had a massive bone infection that took six weeks of a heavy duty antibiotic to clear and a week of being in such excruciating pain that it felt like my jaw was broken again. For the last two years, I’ve had a random, painful neuralgia that no one understands but that we hope my current round of orthodontics will fix. And for most of the last six years, I’ve had a stomach/intestine condition that was probably brought on by the high use of NSAIDs described below. My stomach has mostly healed, but it will possibly never quite be the same.

And of course, all of the other things I blog about regularly: the racism, the sexism, the homophobia, those don’t stop just because I’m in physical pain. In fact, studies show that my pain has probably been taken less seriously over the years because I’m Black and a female.

Through all of this, I have struggled to get the people in my life (employers, friends, sometimes even dentists) to understand: this is a big deal. It’s a big deal to not be able to eat properly on a regular basis. It’s a big deal to be afraid to eat. It’s a big deal to have PTSD and need to overcome it for sometimes monthly trips to dental specialists. But it’s also a big deal to be able to afford treatment, however excruciating it is and however many pain killers it requires. I’ve always been able to cobble together a way to pay, even if it got me in debt. Not everyone has that opportunity. I hope by putting my story out there, I remind people that dental health is a public health issue that can and does affect the entire body. I hope that as we fight for a single payer system, we will push for dental care, including specialty coverage.

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.