Newton's 3rd Law

Spoon Theory, Pain Psychology, & Trying to Find Balance

Last Sunday, I drove home after a truly, deeply, entirely good day. There wasn’t a single fault. I drove home on near empty interstates, occasional rain slowing me down, into the early hours of morning. The clock ticked to midnight, one, two. I cranked the AC until I was shivering and blasted Hamilton, forcing myself to scream sing the lyrics. Fatigue set in quickly, but I drove, holding my eyes open, gritting my teeth against yawns. I sang, “Every action has its equal opposite reaction.” The lyrics came back to me, days later when I began jotting down the first words of this essay in my Notes app. 

I had one of the best days of my life, and I paid for it in pain. The spoon theory is an apt one, frustratingly accurate. Historically, I’ve dealt with my chronic pain by swaying from resentment to compartmentalization. I tuck the constant throbbing aching stabbing piercing I don’t know if I can do this anymore into boxes. I put the boxes on the back shelf of my mind. I get out of bed, I get dressed, and I do whatever needs to be done. As has been my MO for the majority of my life, I push through. Only recently have I started to recognize how much pushing through has cost me. 

After spending a day showing my little brother some of my favorite city, drinking americanos and buying books and taking silly selfies in front of Lake Michigan, then screaming and crying as we watched Megan Rapinoe play in her last match with the US Women’s National Team, I am in worlds of pain. My left knee is carving its way out of my body The tissue of my brain is screaming, skull shattering against it. I long for a soft bed and a day of rest, but instead, I immediately go back to my routine: work and school, more work, more school. 

And, my friends, that’s okay. I am depleted of spoons and I can’t replenish them in the exact ways that I yearn to. It’s a simple fact of a too busy life and the result of a single, perfect day. I can’t spend a day in bed, but I can notice my body. I can spend a moment appreciating the pain and the fatigue seeping through. Then, I can add 30 minutes of yoga to my to do list. I can make sure I drink more water than I normally do and use electrolyte tabs (my current favorite are Nuun) to give my body a running start. I can try to eat three meals a day and restock my fridge’s vegetables. These things may not happen. (Most days, they did not.) Setting the intention is better than wallowing. 

Recently, I started seeing a pain psychologist. I’ve tried to find a therapist consistently for the last several years. The first was young, green, and hopelessly oblivious to the complexities of chronic illness and disability. When she asked me what I did to trigger the professor who accused me of lying about my disability, I stopped our sessions. The second claimed to specialize in chronic pain. She branded herself and her practice as being inclusive of disabled and queer folks. I paid well over $100, maybe $200, per session, out of pocket, to see her virtually. She spouted the handles of disability activists she followed at me, then told me to hire a cleaning service to assist with household chores and join Twitter. It was essential that I be on that platform, she insisted, to find fulfillment and success as an advocate. This was after discussing the negative impacts of social media on my mental health. I stopped seeing her and stopped seeking out therapy, which had been too expensive, ineffective, and often acutely harmful. 

A few months ago, my neurologist referred me to a new pain psychologist at the hospital where I receive the majority of my care. I scheduled the appointment immediately but tried not to get my hopes up. I wanted to believe that she would finally be the mental health professional to fully understand disability. I wanted to have hope, but it doesn’t take long for the medical complex to rob people of such a thing. Disabled and chronically ill people know better than to trust doctors. We know only to rely on ourselves. 

During my first appointment, I told her my story. I started from the beginning, with my first diagnosis, my first week of school missed because of pain. Then there were the seizures, the hospitalizations, the medications that made me lose the ability to speak or made me contemplate driving my car off the road. I talked about college and the twofold traumas I endured. There were the stories of wellness checks and cops at my doorstep. Doctors accusing me of making myself sick, painful treatments, surprise medical bills, insurance denials. I ended with the present: returning to school not to pursue a dream but to bolster myself against an ableist, inaccessible world. 

It is no small thing to be told that you have experienced hell. To welcome someone into your brain and for them to acknowledge the nightmares framed on the wall. 

To have a doctor who easily uses words and phrases like “medical gaslighting” and “ableism” is something I have waited for my entire life. I never thought I would receive this type of care, and I feel deeply privileged¹ - how truly disheartening that good care is a constant privilege - so I want to share what I can, where I can. Below are three things that we’re working on in our sessions, all of which have been shockingly beneficial. 

1. Pain snapshots and body check ins. Doctors love to assign journals. Not the type that inspire creativity or catharsis, but elaborate documentation of one’s health. Medical journaling began when I was diagnosed with Type 1 diabetes. I kept detailed food diaries, writing down every carb consumed, along with blood sugar levels and insulin doses. Then, I started logging my pain. What hurt, when, on a scale of one to ten. None of these journals were helpful, and they made me resentful toward the concept. 

My psychologist pointed out that I push through to an almost pathological extent. I feel my pain - there is no escaping or getting used to it; compartmentalization can only go so far - but I do not acknowledge it. Only at my breaking points do I allow myself to connect with my body. This summer, I began having frequent pain induced panic attacks. They came out of nowhere, and they leveled me. It was only in those moments, hyperventilating in a northern Michigan porta-potty before spreading my grandparents’ ashes or curled up in bed unable to stop sobbing, that I let the extent of my pain crash into me. It goes without saying that this type of compartmentalization has become deeply unhealthy. 

To combat this, I’ve started doing pain snapshots or body check ins. Three times a day - morning, afternoon, and night - I take a breath, listen to my body, and write down how it feels. I spend no more than a minute on this exercise. An example from today:

Morning: body pain mild; head pain piercing; jaw, temples, and neck have most direct pain

Afternoon: holy guacamole is this head pain bonkers bad; is a ghost drilling nails into my temples?

Evening: little to no body pain except for vaccine arms; head pain slightly improved after medication, now mild-moderate.

All day note: Fatigue is better. Exhaustion streak ended. No fainting close calls. 

It’s not complicated, it doesn’t take much time, and it helps me to spend a single moment acknowledging how I feel and moving on. Sometimes the acknowledgment is one that makes me want to cry, like this afternoon’s. Other times, it’s the relief that medication took the edge off or a night of sleep, no matter how poor in quality, dampened a world of pain to a small nation. When you live in pain for so long, it is impossible to differentiate moment to moment. It’s all bad, all the time. These snapshots have helped me feel in control and aware of the minor shifts for the better. 

2. Yoga and stretching. While this does not help with my pain (please stop suggesting it to random disabled people as though it is an easy fix, so help me) I have found that it helps me reinforce the feeling of control over my body that I am trying to build. Slow, controlled movement centers me, and after sitting at a desk all day, this type of movement gives my muscles sips of renewal. When hesitant to start, to do something that would allow for so much undesired quiet time with my brain, my therapist asked me a simple question: “Would you rather just be in pain, or would you rather be in pain and strong?” Strength is not something that I can always attain, and my muscles will forever be an unpredictable, ever shifting thing, but for now, for today, I want to be in pain and strong, so I am making time to be quiet with my body on the mat. 

3. Welcoming righteous anger. I am an angry person. It’s a characteristic I rarely show online, because the tightrope of being angry at the world and being palatable enough to encourage people to educate themselves about disability is an impossibly thin one. I am angry at many things, all of the time. Lately, I’ve been particularly furious about my battles with insurance companies. I received a $700 bill for a required, regularly scheduled pap smear. It was denied on the basis of a diagnostic code for “pelvic and perineal pain” after my gynecologist determined that I likely have endometriosis. Insurance companies do not want us to be healthy. They are a function of capitalism and a health care system that murders disabled, chronically ill, and non-disabled people alike. 

I have had “write insurance appeal” on my to do list for days, maybe a week. Each day, it goes unchecked. I move it to the next. I look at the email containing the appeal instructions and the documentation of reasoning for denial. I do not open the email. I pick something else to do. Laundry, dishes, homework. I debate just letting the hundreds of dollars be added to my already endless bill. It won’t make that much of a difference anyways. I will pay hundreds of dollars each month for the rest of my existence to stay alive. I will always be carrying debt from over a year ago simply for the fact of the body I was born into. It makes me so hopeless I can’t bear opening an email, fighting for something that is just a fact of life as a disabled person. 

When I talked to my psychologist about this anger and resentment, I realized that so much of my procrastinating medical administrative work is my fury that any of it is necessary at all. I would prefer to schedule my auto paying payment plan. Add it to my credit card every month. Never read the statement details. Delete the emails from the hospital telling me my balance has reached a new thousand dollar mark. Avoidance was my answer to anger, and she asked me to channel it into action instead. Think about the hundreds of dollars I could spend on a plane ticket and make the call, write the appeal, acknowledge the reality of the cost of survival, then use it all to collect little wins. Righteous anger, like pain, does not need to be compartmentalized. It can be felt, and it can be used. 

As October begins, a week after the first inklings of this newsletter were poured into my Notes app, I am finally fighting my way back from the devastating exhaustion of one really good day. I am thinking about Newton’s Third Law: for every action, there is an equal and opposite reaction. I don’t study physics, so I can’t tell you the practical meaning of this phrase, but to me, it means that every really good day will likely result in a really bad day, sometimes a stretch of them. It also means that for every really bad day, I might have an okay one, a better one. 

I used to resent my body for this fact, this seeming inability to enjoy and participate in life the way that non-disabled people do. Now, I am taking a snapshot. The good day was worth it. I am exhausted, but I am happy. September was hard, but it was also one of my best months yet. That’s gotta be Newton’s Law, right?

1. I wrote this before learning that my insurance will not be covering my pain psychology appointments. A sick but ultimately predictable twist of fate, I suppose.

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