When Chronic Illness Makes You Forget What You Love

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My fingers were tapping a piano line on the steering wheel before I noticed. I was sitting at a red light, one hand loose against the wheel, and my fingers were following notes from a song playing in the car. No keyboard, no plan. My hands had remembered something before I had put words around any of this.

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It's a body rebess where the truth gets told. With a little dark shoe and a whole lot of grief when his body throws a tent.

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Welcome to A Body Rebels. I'm Tate. This podcast shares my personal experiences and is not medical advice. Please speak with your own provider before making medical decisions. The voice you're hearing is AI because illness makes speaking difficult. But the writing, memories, opinions, and experiences are mine. On this episode of A Body Rebels, a chronic illness podcast, I'm looking at the difference between being good at something and loving something, and why chronic illness pushed me to search for a part of myself beyond work, medicine, and survival. I've spent a good portion of my life learning things quickly, doing them well, and looking calmer from the outside than I felt inside. Saying so risks sounding like bragging. I don't mean the point is praise. I mean my brain has always taken its own route. School made the pattern obvious. Math was a perfect example. My teachers wanted every step on the page. Show the work, write the process, prove I had traveled from the question to the answer using the approved road. I would look at a problem, work through some private mental route, and arrive at the answer. Usually the right answer. Explaining the route in the language my teachers wanted was harder. From my side of the desk, the answer felt clear. From the other side, I had apparently committed an educational misdemeanor. I was restless, talkative, distractable, bright, and hard to contain. If I had been a child in a different era, someone might have attached an acronym to the behavior and handed my parents a brochure. Back then, people mostly saw a kid with a lot going on who interrupted the room. Still, I performed well. I earned good grades, I received strong feedback, I stayed near the top of my class. Performance has value. Competence pays bills, opens doors, and gives people a reason to trust my work. Love is different. I learned the difference slowly because praise has a way of answering a question nobody asked. When I do something well, people assume I've found my lane. They encourage me, they hire me, they point toward the next level. Before long, a person might build a successful life around skills without ever asking whether any of those skills feel personal. Culinary school brought the pattern back almost immediately. My first class was culinary math. Of course. Apparently, someone in the universe enjoyed fractions. I entered the system, figured out the rules, and did well. I earned perfect scores on every assignment and exam. I was told I was the only student to accomplish this, and the school hired me as a tutor. I liked tutoring. I liked watching fear leave someone's face once a problem stopped looking impossible. One section of culinary math gave many students trouble, so I found a cleaner way to explain the material. The tutoring department adopted my method. People also talked about adding the method to school manuals. I never learned whether the manual change happened. Institutions have a special talent for praising an idea before paperwork swallows the trail. I graduated with honors and made the dean's list every term. Later, I used my training as a private chef for one family household, work I've done for decades. Then massage school brought the same familiar pattern. I was an honor student. I received strong feedback. People responded well to my work in the clinic. I had patience, attention, and a sensitivity to what someone's body was telling me before words arrived. I noticed when a shoulder guarded against pain, when a back tightened, or when I'm fine didn't match what I felt beneath my hands. I respected massage work, I valued the skill. I didn't love the work. Admitting this felt harder than expected. Competence creates assumptions. Results become visible while joy stays private. A resume shows training, grades, awards, jobs, and achievements. A resume has no line for whether my inner life feels awake. Months before I found language for this episode, I had already started circling the subject. I wrote a little and stopped. I sometimes do this when a thought feels important but unfinished. I left the pages alone for a while. I meditated, I thought. Then one question kept returning. What do I want? The question wasn't about skill, practicality, income, praise, usefulness, or a new project. I wanted to know what belonged to me with no requirement attached. Years of adaptation had made the answer harder to hear. I've learned to adjust, solve problems, show up, manage symptoms, make calls, follow treatment plans, and keep moving. Chronic illness adds a second job nobody applies for. Appointments, labs, tests, refills, insurance calls, symptoms, side effects, results, waiting for results. Then comes the odd silence between medical events, when I wonder whether no call means good news, or whether somebody plans to ruin Monday morning with a message. My body became an administrative project with terrible lighting. A huge share of my attention goes toward keeping myself functioning. I spend less time on joy without noticing the change. I research because I want answers. I search symptoms because I want relief. I chase explanations because uncertainty wears me down. I've opened a browser for one medical question and ended up 20 tabs deep, reading a research paper, a forum, a miracle claim, and something written by a person who should lose adjective privileges. Illness starts taking over more of my attention. My calendar belongs to specialists. My patients belong to phone trees. My energy gets divided among pain, symptoms, medication schedules, appointments, and whatever needs explaining to the next office. Meanwhile, curiosity waits somewhere behind all of this. Play waits too. So does the part of me drawn towards something for no practical reason? I started looking backward. Memory isn't perfect, so I focused on interests I remember clearly. High diving came first. I loved high diving when I was young. Height, control, nerve, movement, water, all of those details pulled me in. I watched divers stand above a pool, launch into open space, rotate through the air, then enter the water with incredible control. I wanted to learn. A diving group existed and I wanted to join. My parents said no. I don't remember the reason. The answer stayed no, so eventually I stopped asking. Today I have an implanted defibrillator in my chest and a strong interest in avoiding scenes likely to alarm my cardiologist. I'm also afraid of heights. Those facts create a fairly convincing argument against a late life high diving career. Some dreams remain enjoyable in memory, where nobody asks me to climb a platform or sign a waiver. Then piano returned. This memory felt different. I remember being around nine and visiting my best friend after a piano arrived at the house. I was drawn toward the instrument immediately. I loved the sound, the keys, and the strange satisfaction of pressing one note, then another, until a tune began to take shape. I would sit there and pick out small melodies by ear. Nobody assigned them, nobody graded them. I wanted to hear what came next. The memory also carries something uncomfortable. My friend was forced into lessons and made to practice for two hours every day. I began associating the instrument with pressure. I absorbed enough of my friend's dread to start hearing obligation whenever I thought about lessons. A sound I love became connected to a routine I didn't want. So I backed away. Still, I kept noticing piano and music. I would hear a song and follow the piano line. My fingers would tap against my leg, a table, or the steering wheel. I wasn't practicing. I wasn't making a plan. Some part of me still wanted the keys. Eventually, I paid attention. I have spent enough years proving competence. School, culinary training, private chef work, and massage school all showed me what happens when I apply myself. I have lived with sarcoidosis for 20 years, and those years added a different kind of endurance I never asked to demonstrate. I don't need another achievement project. I want something with no duty attached. Piano feels personal for this reason. Prestige, an audience, and a business plan have no place in my reason for learning. I want to learn because I love music. After years spent tracking symptoms, medications, appointments, test results, and physical limits, wanting something for pleasure feels unfamiliar. My mind became so practiced at medical management, I reached a point where naming medications felt easier than naming what I wanted. I don't want illness owning so much mental space. Sarkoidosis is real. Heart failure is real. My implanted defibrillator is real. My limits are real. Finding a song on a keyboard won't erase any of those facts. My identity still deserves room beyond a medical file. Piano gives me somewhere else to place my attention. When I sit with music, I'm learning sound, rhythm, touch, timing, and patience. I get a stretch of time with no lab result to interpret and no insurance call to make. Most important, I don't need to become impressive. I don't need public performance. I don't need mastery on a deadline. I don't need a certificate title, ranking, audience, or income stream. I need a relationship with something beautiful and personal. For years, usefulness carried enormous weight in my life. Work asked for usefulness. Illness asked for discipline. Medicine asked for compliance, observation, organization, and endless attention. With music, my job is to listen. So I'm choosing piano. I'm choosing slow learning, including wrong notes, repetition, awkward beginner sessions, and small progress without turning the beginner stage into a problem to solve. I'm choosing an interest with no obligation to become productive. I don't know where piano will lead, and I don't need an answer. The steering wheel moment gave me enough. My fingers heard a line of music and followed. For once, I want to follow them. Take care of yourself. Keep breathing and remember, sarcoidosis is only rare until you're the one living with it.

SPEAKER_00 11:53

It's a body rebuilt. Body reap where the truth gets told. It gets told about medical mystery. His body throws a tent. It's a body reaping his energy refody reaper.