I thought that pain was the thing that hurts, but now that I’m here, recovering from brain surgery, I realize that I don’t really know what pain is. When I woke up from my surgery, I just felt swollen and stiff all over and also somewhat numb. I didn’t know what could move and what couldn’t. I was doing so well that I skipped the intensive care recovery room and went straight into neurology observation. (I think, it’s all a bit fuzzy.) In the observation room, there were 6 patients and 3 nurses. The nurses were required to make sure that we were awake every couple of hours, that we knew which end was up (literally) and to ask us to rate our pain on a scale of 0 to 10.

I didn’t know what to say. Was I in pain? My head felt like it might explode. Maybe it was supposed to feel that way after being cut open. It wasn’t pain exactly, more like an extraordinary amount of pressure, like what I felt like when I was in labor with no drugs, but that turned out okay.  There was a woman to my right complaining of pain, saying she had to see the doctor, that her pain was unbearable, and all I could think was, “I can’t go to sleep until this woman’s pain is under control.” But it never was under control that night, not after a visit from the resident on call and administration of additional pain meds. At one point I think she got tired and said, “I’m sorry, I’m just not used to throbbing like this.” I will never know what kind of pain she was in and whether it got better, but it’s not my job to know, either.

As the days wore on, I had to rate my pain less frequently, but the nurses and doctors still asked every time they saw me. And it was clear that the number that I gave them back, meaningless to me, had the power to trigger action. I also learned that pain does not necessarily feel like a hurt. Instead, I was in uncontrolled pain with my normally low blood pressure spiraling upward, my body consumed by mild shakes that I could not control, and swelling in my neck precluding normal swallowing of even small sips of water and medication. Still, on that first day after surgery, one of the nurses had said, “She’s swallowing fine, you can cancel the visit from the Speech Language Pathologist.” Luckily, my friend Sarah, the pediatrician/public-health-officer/epidemiologist/outward-face-of-syphilis, had a talk with my team to let them know that my pain situation was not under control and insisted that it be addressed before bedtime (at least before the resident’s bedtime). Reluctantly, the team switched me back to pain injections instead of the slower acting tablets that they had put me on.

But to go home I had to get off the injections. The nurses strongly encouraged me to try to stretch out the time that I spent between pain meds to wean myself as soon as possible. On day 3 after surgery the nurse told me that she wanted to make sure that my pain was below a 5. As long as I told her it was below 5, she was happy. I’m not sure what she thinks below 5 means, but to me it means that I can swallow, am not shaking, have normal blood pressure, and don’t feel the dread of encroaching stiffness in my neck.

Turns out, pain is different for every person, and some people have dedicated their lives to understanding it from different perspectives, such as those of physicians, nurses, patients, social scientists, etc.  When I was first diagnosed with breast cancer, some people joked, “Welcome to the club that you never wanted to join!” But I consider the club of people who live with chronic disease to be another important one for me, and I am grateful to them for teaching me a bit about what it means to live in a body that is at odds with itself or with society at large. One friend and disabilities activist, Layla, posted on her Facebook feed yesterday that she was required to “provide documentation of pain from a phantom limb” to the Powers That Be. We can agree that is funny, right?

Now it’s a week after surgery and I am running out of pain medication once again. I went to my family doctor today and talked through what I can expect. She is mostly reassuring, but sometimes the conversation verges on the ridiculous:

Them: Do you have a headache, or do you have pain in your head?

Me: Do you mean other than the place where you cut my head open and sewed it back together?