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(Myotonic Congenita – CLCN1 Gene Mutation)

Myotonic congenita is a genetic muscle disorder caused by mutations in the CLCN1 gene—it’s the chloride channel that normally lets muscles relax fast after they contract. In my case, that channel glitches. So every time I move—walk, stand, even blink—muscles tighten up, lock, and take seconds, sometimes a minute, to unwind. No pain. Just endless stiffness, like you’re holding a max squat while someone counts down slow. The body stays muscular—hell, it looks ripped—but it’s always on, always overworking. Fatigue hits quick. Effort? Drain.

Doctors call it Thomsen’s disease when it’s congenital (from birth) and Becker’s when it starts later—but mine’s been there since five, classic myotonic. People joke “fainting goats” because goats with the same mutation stiffen up and fall over when scared. Yeah, that was me—except no comedy.

At eighteen, my body did something else wild. Shot up to five-eleven in months. Friends circled, “Yo, look at you—you’re tall now!” Strangers stared. The contractions quieted just enough—like the stretch bought me space. Muscles stayed tight but not choking. I looked strong, moved almost normal. Three years. Three years of air.

No guidance. No big brother. Parents old-school—hands off. So I ran: clubs, parties, wrong streets. Drugs, gangs, fake energy. I blended—tall, jacked—but inside I knew: “This ain’t mine.” God gave me a preview. Then shut it down.

Twenty-one. Thighs locked first. Steps froze mid-stride. Tension everywhere. Legs do everything—so they took the worst. Looked fine outside—people said, “Why sit? You look fit.” No one asked. No sympathy. Just judgment. “Lazy.” “Excuses.”

I quit. Door closed. World sped on. Friends gone. Family: “Work.” Tried—twenty minutes, crash. Muscles overworked 24/7. No fuel left. Anxiety chewed me. Depression nailed me down. No one saw value. No one cared.

Bedroom became prison. PlayStation, junk food—could eat anything, no fat, because the tension kept me carved. One mercy. Prayed. Cried. Wiped tears. “God saves the best for last.” Kept breathing. Decades dragged—thirty-five years total. Dark. Silent. Stuck. Waiting.

“Every authentic moment from my childhood – stepping stones toward the moment my body wouldn’t cooperate. At age 5, I first realized something was different. I couldn’t climb school stairs like other kids. My muscles wouldn’t cooperate. My legs felt heavy, my muscles felt locked. I remember the first time I couldn’t climb the school stairs – my legs felt like they didn’t belong to me. My muscles felt like they were locked in place. I remember the first realization that my muscles wouldn’t cooperate like other kids’ muscles.
At age 5, during PE sports day, I remember hitting the ball in rounders but I couldn’t run. My teacher shouted ‘RUN NOW!’ but my legs wouldn’t move. I fell on my face. I stayed quiet instead of explaining. I remember the first time my muscles betrayed me.
At age 5-6, my muscles went into total contraction nightmare. Every muscle in my body would contract when I moved – some took a full minute to relax. Some were full, some medium, some light. I was slow, sluggish, unbalanced. I’d get stuck on stairs 2nd or 3rd step. I’d freeze getting from chair/car/bed. If someone pushed me, my whole body would go into contraction and I’d fall over like a statue. My muscles wouldn’t cooperate like normal muscles.
At age 5-6, I went into my own shell. I was silent, soft, slow, limited playing. I had no confidence. I dared not ask teachers for help. I went into my own shell. I day-dreamed entire classes for years. I was known as “the sissy girl” to everyone. I didn’t learn anything – I was in foundation level in all subjects. By age 16 in 1996, I failed every subject. I went deeper into my shell.
At age 8, I told my mum my muscles were locked all the time. She took me to the doctor. The doctor said ‘you’ll get better around 13’ which didn’t happen. I remember the first false hope that was given to me. I remember the first time my body was judged instead of understood. I remember the first time my muscles were told they would get better – which they never did.
Every authentic moment from my childhood – stepping stones toward the moment my body wouldn’t cooperate. Every authentic struggle. Every authentic realization. Every authentic moment – written in my own muscle and memory, not in artificial images, but in my own authentic words, my own authentic experiences, my own authentic stepping stones toward the moment my body wouldn’t cooperate.”

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