Is there anything worse than someone talking about being in pain? It’s ok to BE in pain, but silently. The silence makes the pain noble. But the talking about it is tedium. It’s weakness. I’m willing to believe this may entirely be my own projection, fueled by self-loathing, because the truth is, I’m in pain all the time. But I think it’s real. No one wants to hear about pain. But pain is the lens through which I experience the world. As much as I hate it, it’s my constant companion.
My relationship with chronic pain started in high school thanks to high school soccer. I was an indifferent soccer player, mostly participating to have something to do after school. One day during practice I stretched my leg out to kick the ball and my ACL tore along with some cartilage. It hurt like a mother fucker, which is one of the colorful expressions I began yelling. My coach, more concerned with my swearing than whatever I’d done to my knee, told me to walk it off, maybe run around the field. You’ll be shocked to learn this did not cure me.
I had surgery on the knee to scope out the torn cartilage. They did not reconstruct the ACL. They’d only just figured out arthroscopic surgery. A full-on ACL reconstruction was for elite athletes, not teenagers who actually didn’t mind the excuse not to play sports anymore. Removing the cartilage took care of the searing pain and swelling for the most part. I got on with living my young adult life.
Within a year or two I had started to develop a constant ache in my right knee. I took a lot of Advil. The pain was only part of it. Sometimes when I tried to walk up or down a hill, my knee would feel like it was rolling out of joint. It was an awful feeling. There was something about it that triggered panic and revulsion. My body was not body-ing properly.
One of the early messages I absorbed is that the worst possible thing you can be in the world is ‘needy’. Be self-sufficient. Don’t be a whiner. Don’t cry or I’ll give you something to cry about. Don’t make demands of other people. Don’t ask for help. Don’t need help. Don’t be a burden. For someone wired like this pain is a nightmare. To ask for help? To admit you can’t do something? To ask people to change or alter their plans because of your pain? Oh lord, the worst! The absolute worst! In real life what this translates to is a kind of simmering, self-pitying self-hatred that makes any requests I make for help come out churlish, bitchy and whiny. Fuck you for making me admit that I can’t participate.
Even in the early years of my chronic knee pain I was already limiting in my mind what I believed was possible and expanding what seemed impossible. I lived in Colorado, a state famous or infamous for its obsession with outdoor pursuits, none of which seemed to include me. I could hike, as long as it wasn’t for too long, or didn’t require me to walk up or down steep hills, ha ha ha. I couldn’t ski without my knee rolling and forget about snowboarding. I could bike ok, as long as it wasn’t difficult terrain. I walked a lot because I was a college student without a car, and I was in pain a lot, and felt sorry for myself a lot.
In my mid-twenties, not even a decade from the original injury, I finally got a job with decent health benefits and made an appointment to see an orthopedist about my perpetually whining knee. After doing some x-rays the doctor sat me down and told me accusingly that I had osteo-arthritis, the worst he’d ever seen in a young person.
His demeanor suggested that he could not believe I was so stupid to allow this to happen. What I needed, he said, was joint replacement but I was too young. Joint replacements don’t last forever. Eventually they have to be re-done. They can’t be redone more than once or twice, because they start running out of bone to attach to. If they started replacing my joints at 25, I’d be wheelchair bound by 50 if I was lucky.
In retrospect I wish I’d had the foresight to ask some follow up questions to the doctor. “That seems weird that I would have such severe arthritis at the age of 25, no? What would cause that? Perhaps I should be referred to a specialist of some kind?” But I was young and a person in a position of authority was treating me like I’d fucked up so I figured it was my fault somehow. It was never too hard to convince me that I’d fucked up. It was my default assumption most of the time.
According to the orthopedist, my only option was a knee brace that would take pressure off the joint. It was ugly, large, and clunky; just the thing a young woman in her 20s wants to incorporate into her wardrobe but it worked. For the first time in years I was not in pain every day. It felt like a miracle.
The brace helped but like lots of things that help, it also hindered. Goodbye miniskirts. Goodbye skinny jeans. I could find pants that would go over the brace but it quickly tore holes in most of them. It destroyed tights. It would get hot and sweaty gross in the summer. It was cold in the winter. I walked with a weird limp. It made going through airport security a bitch, even pre 9/11.
After a few years I got a different job with better insurance and sought out a second opinion. The doctor seemed far more sanguine about my options than the first. Yes there was a surgery we could do. They would take bone from my hip and graft it into the knee, creating a kind of internal knee brace. I eagerly signed up. The surgery was intense and the recovery was long, but it worked. I could walk without pain for the first time in 10 years.
Pain, like cake, enjoys layering. There’s your very forward, upfront pain, just flat out screaming at you. There’s quieter pain that sits there in the background, making everything you do just a little bit harder. Post-surgery I discovered “law of unintended consequences” pain. Within a year of my knee surgery, all my other joints and back began hurting in various degrees. I lived this way for years, experiencing joint pain of varying degrees, and related problems like plantar fasciitis and sciatica that occur because you’re unconsciously adjusting for the joint pain.
Then about four or five years ago I suddenly developed a different pain. My whole body ached, accompanied by a dumb-ening of my brain. I was tired. I believed it was related to my immune system, since this pain flare occurred after my insurance, in its infinite wisdom, decided it would no longer cover the injectable biologic immune suppressant I was taking for my psoriasis. (Oh, yeah, I have the painful heartbreak of psoriasis too.) While the doctor’s office attempted to work out the problem, they gave me half a dose of my usual, figuring that half was better than none. Within a week I felt like I’d been hit by a truck that had given me a concussion along with everything else.
Pain is such a hard thing to explain to people, especially doctors who are looking for specific descriptions that match whatever specific descriptions they have in their textbook or insurance code number. My first rheumatologist walked into our first appointment and with only the most cursory attempt at actually talking to me, explained to me that I had fibromyalgia, that it was untreatable, and the best things I could do would be to lose weight, exercise more, take up meditation and maybe try “forest bathing”.
After almost a year of going to that doctor with no results except a destroyed self-esteem, I sought out a second opinion. The new doctor I finally got in to see diagnosed me as having psoriatic arthritis. It was time to graduate to the next level of biologic treatments. No more the twice a year injection at the dermatologist. Now I was moving into the infusion center where I would be “infused” with an immunosuppressant every six weeks.
The new infusions helped with the full body pain, but it didn’t resolve my back pain or foot pain or whatever bullshit happened to be bothering me at any given time. Sciatica and plantar fasciitis have been regular visitors in the ensuing years. It usually goes something like this: I decide I need to “get in shape”. I embark on the most innocuous of exercise regimens, like, I’m going to walk around the neighborhood every day! My plantar fasciitis and/or my sciatica immediately show up to shut the party down. I try to ignore the pain and keep on working out for a while, but eventually must give in. I go through all the things to calm the pain down: yoga, stretching, massage, physical therapy, exercise. It lingers no matter what I do until one day it magically clears up and vanishes so decidedly it makes me question my own sanity. I decide I need to get in shape, ad infinitum.
Here’s the truth. Pain is a thief. Pain is a vandal. Pain destroys your plans. Pain robs you of your confidence. Pain leaves you exhausted and vulnerable. Pain shrinks your life and makes the simplest of decisions fraught. Should I plan to go to this hike/dance/trip, knowing that I will be in pain which will tire me out and make me regret my decision to go, or should I refuse, knowing that I will miss out and feel sorry for myself and regret my decision not to go?
Which is how this has anything to do with my trip to Spain. My first answer was no, in part because I didn’t know how much I’d be able to enjoy. But my second answer was really “fuck that”. I’m tired of shrinking my world. I bought the tickets to go in April, thinking to myself I have nine months to get in shape for the trip. I have nine months to defy my previous history and get strong. Nine months is forever.
Looks like there’s going to be a Part 3!
Random Knowledge Syndrome 
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