🍕 • the pizza stands for pain
This is what I want to tell people whenever they ask me about my knees or my hands. It’s what I wish I could’ve told myself when I was 21.
It’s very bleak and will probably take you out of a good mood. I will be talking about being very sad, for what I felt was a very long time. At the end, I’m not sad anymore; but there’s a lot between here and there, so brace yourself. (Or skip to the end.)
I’m writing this because I believe there are many other people who may find themselves in a similar position.
They are first encountering chronic pain, young, and very confused about how the rest of their lives will play out.
They are fearful of what they will not be able to do, the dreams they will have to give up, the lives that they will not get to live.
Some of those people may, like I did, feel alone and without people to relate to because their peers are young and healthy, able-bodied and mobile.
They are gifted identities that are difficult to embrace and limitations that are exhausting to explain.
They feel different.
December - May 2018
I was barely 21. I had one semester of college left to finish my bachelors and a well-paying web developer job lined up that would start two months after I graduated. During those two months, I planned to go on a big road trip to New England with a girl that I had met earlier that year who I loved. She was willing to go anywhere, do anything. We would sleep in a tent. Together.
I spent most of my time at the student union, where I laid on luxurious, probably never washed, couches, listening to a playlist of music I curated specifically to help me fall asleep, reading my Kindle until I did fall asleep, waking up sometime after, falling asleep again, until finally I decided to go home and sleep there. After half-assing all my classes the next day, I’d come back and do it again.
I would ride my road bike in my neon spandex suits for hours at a time, obsessing over training metrics and preparing for collegiate and domestic races. I would race in towns with bad roads, bad weather, amidst groups of other racers packed so tightly together that you could barely see ahead of you, hitting potholes deep enough to swim or bury bodies in. Once it was raining so bad during a race that I threw down my glasses because they kept fogging up and obscuring my vision, only to suddenly become aware of all of the rocks and dirt that they had been keeping out of my eyes. (These things all felt good in the moment, but given a choice, I’m not sure if I would do them again.)
I’d go on long road trips with friends for multi-day backpacking trips in remote areas with rough terrain and no cell phone service. I’d cook big meals with heavy cookware to share at potlucks, or be on my feet all day working as a bike mechanic at the local co-op.
I’d walk the house dog, Snickers. I’d have an idea for a program or script and bust it out in one day with my stupid fast 160 WPM fingers.
I’d go for runs. I’d take the stairs.
I planned to be a work hard–do all. With my high-paying job I’d be able to buy better equipment. I’d become a serious domestic amateur wannabe bike racer. I’d triple crown the PCT, CTD, and the AT. I’d find a new job on the West Coast and continue to do all what I had been doing, but even more. I had a plan and a sense of control. I felt indestructible.
May - June 2018
One day in May I did some squats. But they didn’t feel quite right. I tried again the next week, with less weight but still, they weren’t quite right.
The week afterwards I felt a new sensation. An awareness of my knees. A pain under my kneecap when bringing my ankle towards my butt.
I raced on it. I rode 100 some-odd miles up and down Mt. Hamilton on it. I tripped acid on it in Acadia in Maine and thought “maybe this is forever” but at the same time didn’t really believe it. I climbed up over New England granite peaks and down dense green Mt. Tamalpais slopes and through the fog of the Marin Headlands and dry brush of Coyote Hills on it.
I saw the sunrise on the East Coast and the sunset over the Bay Area and somehow thought that me and my strange knees were becoming familiars, almost friends. We lived peacefully together, for some time.
Maybe they were the inspiration for an anxious thought, now and again, but never more than that.
June - August 2018
Mid-June I flew back into Chicago from my parents’ home in California, leaving adventure and my girlfriend behind to start my new job. I arrived at Economy Lot G sometime around the weird part of the midwestern summer early morning where you feel confused, terrible and it’s already really fucking hot.
In the trunk of my car, the heat had melted a stick of deodorant into a puddle that touched or coated most everything else around it. The water that sat in the cooler had turned strange. My girlfriend was now very far away, and was going to be far away for a very long time. This all made me very sad. (Economy Lot G still makes me sad today, and I bet it elicits that same feeling from many other travelers). I started the drive home and cried a little, as I imagine most people do after going through ORD.
Back home in Urbana I finally decided to give my knees a break. Strangely, the rest only made things worse. What was before an awkward awareness turned to outright pain. Walking was painful. Sitting was painful. Standing was painful. There was a new sensation, of tin foil crunching between my knee and my femur, of tiny needlings and catches and pops and heat which I had then barely known.
I stopped biking. I stopped leaving my house, save for work or to sit still somewhere else. Standing at parties became unappealing and drinking only made the pain worse.
I found that I could walk without pain if I did it barefoot and very slowly and so, when I grew restless, that’s what I did. The feel of warm, soft, Urbana brick roads heated by the sun and long days under the grip my toes, or the sharp stab of some unseen rock or glass shard. During these short walks around the block, alone with myself and the summer air, I was grateful for every step that I walked without pain.
The only other thing I was willing to do was to walk Snickers. He was an old dog, pushing 16 (now 17 and alive as of writing this), with equally creaky joints. He took his time, and so did I. We didn’t like uneven terrain. We didn’t like walking more than a few blocks. He made time for me. He loved me. I loved him. We understood each other.
Still, the break from activity and now dead dream of bike racing made me deeply depressed. I remember joking with a friend, saying “if I was a horse, they’d shoot me”. My identity was so deeply tied to my mobility that, without it, I lost my sense of self.
I became existentially obsessed, fixated on the idea that if my mobility could go so quickly, then so could my life. And that if my life could go so quickly, there was no need for me to focus so hard on living well and feeling good. Countless hours were spent staring out of windows or into space thinking of my death or of how little I wanted to live the rest of my life if I were to live it with the limitations that I’d had now.
I gained weight. I threw fits in my room alone like the fits I had when I was a child. I depressed and alienated my girlfriend with a morbid stream of thoughts and defeatism. I refused to visit her in NYC out of fear of the stairs up to her apartment and of the walking that we would do in the airport and in the city.
Pain became so linked to the idea of my early death that I would have done anything to avoid it, and so it became easier and easier to let go of things that I loved.
I would think “next month I’ll be healed,” and get nauseous seeing that next month had already come and nothing had changed. Googling my symptoms only served to make my heart race and my stomach turn.
My healthcare providers I saw were of no help to me. Young people shouldn’t feel the way that I said that I was feeling. The magical 6 - 8 weeks + meloxicam + 800mg ibuprofen every 4 hours cocktail had no effect. I realized patellofemoral pain syndrome is just fancy for “knee hurts for mysterious reasons”. Gel-syn injections did nothing but help me hit my deductible. __ My PA insisted an MRI would be useless and pushed for steroid injections which the internet told me would only decay my tendons and ligaments.
So I waited. And waited.
A good friend let me use their drum kit and taught me to play drums. I loved playing drums. I greatly worsened my tinnitus from playing drums.
I didn’t want to see my friends anymore. I was ashamed of what I’d become and what I could not do.
Alone, my mind created scenarios of people I knew dismissing the severity of my pain; my absence from social circles and events as a result of a persistent ache unjustifiable. But now it was so central to my identity that I couldn’t imagine talking about anything but my pain. And so, often, I spoke to no one.
On my 22nd birthday I went to a party where I was bullied by a girl in a wheelchair into paying a $5 donation for entry into my friend’s house, which I’d never had to pay to get into before. There I drank, stood, and listened to loud music in an enclosed space: my 3 worst enemies. I went home shortly after.
I laid in bed.
I was depressed.
My knees hurt.
My ears rang.
I turned 22.
October - November 2018
Most days after that followed a similar pattern. I’d wake up to anxious thoughts and my racing heart in the morning, existential dread in the day, and continued existential dread through the rest of the night till my brain finally threw it in and went to sleep.
The only things that kept me going were my discovery of CBD’s anxiety relieving effects (don’t worry I’m not going to try to sell any CBD to you at the end of this), video games (breath of the wild, smash ultimate, god bless), and the unwavering support of my girlfriend, in the form of a virtual shoulder to lean on and someone to stay up with me through the night during weekends I spent home alone.
Still, much remained the same until that December. That month, I saw a doctor in San Francisco who didn’t take insurance (ouch) but was willing to give me an MRI and surgical assessment, all on the same day. In healthcare-system time, this is the equivalent of a Disneyland fastpass that you also have to pay $3000 for. (It was originally going to be $3300, but they ended up giving me a discount on one of my two knee MRIs. I still have no idea why and had no idea that anyone could ever give anyone any type of discount for a medical-anything.)
I had both knees MRI’d inside a weird little washing-machine looking thing. A nice radiologist who talked about his vintage car collection put a blanket over my crotch area while I sat with one knee inserted into the weird little washing-machine thing so that I wouldn’t be too cold.
The doctor had me run around for a little; the fastest I’d moved in months. All the nurses and assistants gathered to watch me. I felt embarrassed but didn’t say anything.
I sat on an examination table in a room with minimal furniture and equipment, all painted with muted pastel colors and all perhaps very expensive. An open window let in clean sunlight and a view of the Pacific.
The doctor pushed down on my kneecaps the same way you might hold down a very buoyant object underwater, perhaps a beach ball or a person you’re trying to drown. He was looking for crepitus and roughness in my cartilage. All the assistants continued to watch.
Soon afterwards we sat down and he discussed his findings, a product of the actual examination and the MRIs:
- The cartilage on both my knees was healthy.
- My pain was the result of large buildups of scar tissue being pinched and torn by the not-so-smooth gliding of my kneecap over my femur.
- It could easily be corrected with arthroscopic surgery.
I asked him how often that resolves issues for his patients. He gave me a slight-wise-old-man-smile and a little nose exhalation. He told me: “98% of the time.” I felt lightheaded. I couldn’t believe it. I finally had what I needed.
- MRIs of my knees showing clear defects and operable sites.
- Medical records recommending surgery from a highly recognized orthopedic surgeon.
February 2019 /// Oh yeah, about my hands /// A Side-Quest
A quick detour to explain the situation that arose with my hands:
That February I began to suffer extreme pain in my forearms and fingers as a result of some misdirected PT, a 40 hour/week programming job where I had no respect for ergonomics, and a passion for Super Smash Bros Ultimate™ (please don’t mention that last part to my former employer).
Anyway, at this point my knees had really beat me down, so I just said “oh, another one, throw it on the pile.” My hands could be a whole ‘nother story, but I’ll save it for some other day. I’m tired! So for now, here’s the summary.
Things that became very difficult / impossible as a result:
- Video games (this one really hurt)
- Shaking hands
- High fives
- Using my phone, in general
- Ordering from the touchscreen menu at Taco Bell
- Gripping anything
- Sex, again, for emphasis (this whole … contorting yourself around another person thing is all good and well but when it hurts to grip anything / have your knees not straight / have to wear wrist braces at night and sleep on your back, well, yeah)
I stopped working for three freaking months. I saw my friends even less. No more making big bowls of delicious soup to trick them into coming over. Doctors told me to just push through it because it couldn’t have been that bad. Everyone does it! A very hostile primary care provider determined I didn’t have carpal tunnel and therefore, I couldn’t be in pain! Even my own PT told me to just push through it and go back to work (I didn’t like that PT).
After those three months, nothing really improved, although I was eventually diagnosed with forearm flexor tendinitis and found a primary care provider who believed what I had to say and would vouch for my pain to my employer.
I ended up being able to return to work through the use of a very powerful and flexible speech to computer input tool called Talon Voice with an awesome community and Slack channel that also happened to become my very first group of chronic pain suffering-peers, something I desperately needed and hadn’t realized till then. It empowered me to work despite my disability and made me feel badass for doing it. I will always feel grateful to the developer and community for that.
Okay, back to my knees.
It would be another 3 months after that appointment in San Francisco __ ‘till I had the surgery done by another great orthopedic surgeon in Chicago. My girlfriend came all the way in from New York to drive me to the operation. I gleefully signed a waiver saying that if I died during the operation it’d be on me. I changed into a gown that covered nothing and had these goofy looking booties that I had to put my feet through. I took one last good dump.
My doctor came in to check on me before the operation and as he left to prepare, I heard him describing me to the rest of the medical staff as “the one that asks a lot of questions.” I laughed, because that’s exactly who I was. I made chit chat with all the medical staff and asked about how everything worked. Somebody put an IV in me. What felt like hundreds of people came in asking me the same few things:
- What’s your name?
- Which knee are you having surgery on today?
- Why do you ask so many fucking questions? (not actually)
They wheeled me through the facility on a bed like that scene in Trainspotting where the main character does too much heroin. I saw a lot of cool medical equipment. I asked a lot of questions. I told the anesthesiologist he was a cool guy and had a cool job. I felt good. I was out.
When I finally woke up the nurse asked me if I felt a sharp pain in my knee. I’d just had arthroscopic surgery, which is basically someone just shoving a bunch of tiny scissors and knives inside your body, so yes. I asked for my girlfriend. She came. I still felt good. I was excited to start healing. Her and the nurse wheeled me out to my car. I love being wheeled places. I asked the nurse to make me do a flip, but she didn’t.
My girlfriend then drove us to our hotel where, delirious on my prescribed opioids, we would watch TV and get to feel good about now and the future.
March - August, September 2019
Recovery was greatly aided by an amazing PT I had (I was fortunate enough to find the motivation to leave the other, less-amazing PT) who showed me that my other, non-surgery-ified knee was actually pretty well-off, in addition to working wonders with the post-surgery knee. My irrational fear of activity and never being mobile again began to fade.
I didn’t get back to 100%, for my hands or my knees, and, as of writing this, believe I most likely never will. I’m still probably never going to race bikes again or be able to abuse my hands playing video games for hours on end like I did before, but I’ve improved so much since then that these things don’t bother me as much as I thought they might.
I know many others who are not as lucky with the progress they make on their pain, and so I am grateful for what progress I’ve been able to achieve.
That summer I would go backpacking in Michigan on Manitou Island, icing my knees in crystal clear Lake Michigan water and getting very stoned in the backcountry with a group of people that I deeply loved. I’d backpack through alpine valleys in the Wind River Range in Wyoming and watch the moonrise over massive granite spires and hold my pee in at night out of fear of bears. Again, with a group of people that I deeply loved. I’d ride a new electric-assist bicycle around town with my girlfriend and hike up and down the Pacific coast together for the first time in forever. A medical marijuana card would let me naturally relieve pain while also feeling goofy without the inflammation and discomfort of alcohol, although I still somehow developed a strong love for whisky.
I’d look for jobs and think about my future. I’d think of death fondly, more as a fact of life than something to obsess over and fear. My relationship with my girlfriend would come to an end, and I would be consoled by my best friend about it not an hour later during a pain-free walk over the same summer-warmed Urbana brick roads I sadly pawed at with my bare feet the summer the year before.
Through a number of weekend trips to Midwestern beaches and lakes I would develop a crush on a weird woman with a love of the outdoors and an off-beat sense of humor. (Nothing came of it but, hey! It’s nice to feel.)
I would finally feel comfortable with my coworkers. I would look at the date and not shudder at the passing of time. I’d learn to stretch and exercise in ways that kept the pain away and me feeling well. I’d lose weight. I’d play drums on an electronic drum kit without fear of worsening my tinnitus thanks to a volume knob.
I’d ride through fields of fireflies and deer and open country with my friends, dusk, evening, and night. I’d cook big pots of pork braised in tomatillos and broth to share. I’d take photos of things I loved in places I never thought I’d go to.
I’d walk Snickers, the house dog.
I’d rediscover my sense of identity and self.
I’d be grateful just to be alive.
I’d learn to love my body again.
I’d turn 23.