A Dancer Dies Twice — How Chronic Illness Took My Life Before Death Ever Could

I came into this world fighting. I was born premature by emergency C-section, the cord wrapped tight around my neck. I stopped breathing three times before I even had a chance to live. My mom almost died too. The bright hospital lights, the sterile smell of antiseptic, the chaos of doctors and nurses rushing — that was my entry into the world: survival.

As a baby, I was always sick. My mom remembers endless ear infections, stomach pain so bad I couldn’t eat without crying, constant bloating. Doctors called it “growing pains,” “colic,” “anxious stomach.” Even then, I was being dismissed.

But I wasn’t just sickness. I was a girl with energy, laughter, music in my veins. My childhood soundtrack was the Spice Girls, Britney Spears, 2Pac. My mom drove us around blasting ZZ Top, the wind in my hair as I pressed my face to the car window. At the skating rink, Metallica and Michael Jackson rattled the speakers while I rollerbladed under flashing lights. By fourteen, I’d found hip hop, and it became home.

By 2012, I was living on James Brown and breakin’ tracks. In 2013, it was 90s hip hop, 93 ’Til Infinity blasting in my headphones as I practiced toprock, even while driving, arms moving on the steering wheel. I smelled like Herbal Essences shampoo, my body sore from training, but I felt alive. Nights with my crew, street performing under neon lights, concrete beneath our feet — that was my freedom.

We even won a contest that landed us a performance at the I Love the 90s tour with Vanilla Ice. Standing under stage lights, sweat dripping, the crowd cheering — it was everything I’d ever dreamed of. Vanilla Ice liked us so much he brought us along for more shows. For a moment, I was living my dream.

But pain was always waiting.

At eleven, I’d fallen ice skating, hit my head, and headaches became my shadow. By seventeen, I’d survived seven car accidents. My spine ached, my neck stiffened, cortisone shots burned into my back. At eighteen, pleurisy hit alongside a headache that left me writhing in the ER. That was my first spinal tap. I lay curled on a hospital bed, the paper crinkling beneath me, clutching a pillow. The fluorescent lights buzzed above, the thin blanket scratched my skin, and I tried to stay still as a needle slid into my spine.

At twenty, I chased another dream: becoming a doctor. I wanted to be the kind who listened. I enrolled in college, pre-med, studying late nights in coffee shops, the smell of espresso on my clothes, music in my ears. But the pain was too much. My back, my neck — it broke me down. I dropped out, grief heavy in my chest.

I tried again in 2014. This time, I fought harder. I made the Dean’s List, graduated with my associate’s degree, enrolled in a four-year program. I felt proud. I believed maybe I could do it.

Then 2017 happened.

I was upstairs taking my EMT final. My best friend Mandi was downstairs in her engineering class. She left class, sat outside, and her heart stopped. I didn’t know. Days later, I went to message her, and instead I saw RIP covering her Facebook. My stomach dropped. My hands went cold. I stared at the screen, whispering, “No, no, no.”

The guilt tore me apart. I was training as an EMT. I knew CPR. If I had just gone downstairs, could I have saved her? She was my safety, my anchor. Losing her shattered me. My dissociation spiraled. My health collapsed. I couldn’t keep up with school or work. Jobs slipped away as neck pain left me calling in again and again.

And the hospitals kept coming.

At twenty-six, driving to work, my vision went black. I made it to the ER, heart pounding. The doctor barely looked at me. He joked with nurses, smelled of cologne, laughed — and then insisted on a spinal tap. I curled forward, hugging a pillow, the paper sheet loud under me. The cold burn of the needle. “Oops,” he muttered. And pain exploded in my skull.

For four days, I lay in agony, unable to lift my head. I finally drove myself back, tears streaking down my face. They wheeled me into a curtained ER bay. The smell of bleach was sharp, the stretcher beneath me stiff and thin. A nurse tied a tourniquet around my arm, elastic biting in. Warm blood left my vein. Moments later, it was pushed into my spine. The pressure was crushing, suffocating. I gripped the rails, knuckles white, whispering silent prayers.

And then… relief. The storm eased. For the first time in days, I could breathe without pain. Tears spilled — not just from the pressure, but from the shock of finally being helped.

That relief didn’t last.

In 2013, a simple breakdancing move tore my labrum. Healing took a year. The same year, I tried Botox for migraines. Nobody warned me. My GI system began shutting down. Gastroparesis crept in. I saw doctor after doctor, none with answers.

At twenty-three, I was diagnosed with Celiac disease. At twenty-four, ankylosing spondylitis after uveitis. At twenty-five, ovarian cysts ruptured over and over, dismissed as “nothing.” At twenty-six, the botched spinal tap left me with my first CSF leak.

In 2015, I lifted luggage and felt a tear in my groin. Heavy dragging pain. Doctors told me it was phantom womb pain, pelvic pain, even suggested an STD. I was humiliated. I researched myself, found Dr. Shirin Towfigh’s work on women and hernias, and finally found a doctor who believed me. I flew to Florida for a no-mesh hernia repair. The pain was real all along.

In 2016, I was rear-ended at 50 mph pulling into my driveway. Jugular vein stenosis, chronic pain. A chiropractor adjusted me — and instantly I felt it: dizziness, fatigue, brain fog, severe neck pain. Another CSF leak.

In 2017, dissociated and spiraling, I fed a raccoon and was bitten. Rabies shots followed: fourteen injections. The burn of the needle, the chemical smell of alcohol wipes, the soreness spreading through my arm. My body unraveled. Weakness spread through my legs. Guillain-Barré was suspected.

Another spinal tap was ordered. I begged them to be careful. The doctor walked in, muttering about being late for golf. He thought I was sedated, but I wasn’t. For nineteen minutes, he jabbed my spine again and again, the cold pain shooting down my legs, tears streaming down my face. He wanted to leave. I wanted to scream: this is my life, not your inconvenience.

Afterward, I collapsed. My blood pressure dropped to 88/50. My heart raced. Fatigue crushed me so I couldn’t stand more than a minute. My memory slipped. My neck burned. Doctors waved it off as “vaccine side effects.”

But then — hope. Another anesthesiologist believed me. He walked into the ER, kind eyes, gentle voice. “You don’t fit the classic picture,” he said, “but I believe you.” He performed another blood patch. Relief came. He whispered words I carry to this day: “It’s going to be a hard road. But I believe you.”

In 2018, after ER after ER dismissing me, I found Dr. Ian Carroll through a YouTube talk. He listened. He said, “There’s a 51% chance this is a CSF leak, 49% it isn’t. But I’ll fight for you.” He presented my case before a board. Some said no. Some said yes. He won. In October 2018, I had another blood patch. Relief came, but then rebound high pressure slammed me. It felt like my skull was filling with water, pressure pressing out through my eyes and ears. I couldn’t lie flat. My vision blurred. My head felt like it would burst. A cruel flip side: one extreme replaced with another.

In 2019, my mom lost her house in a tornado. We moved back to California. Our apartment fell through. Six months homeless. Six months of trying to heal in cars, motels, borrowed couches. The smell of stale car air, the ache of lying on seats instead of beds, the sound of freeway traffic while my body screamed.

In 2020, intimacy caused another setback. My patch blew. Dr. Carroll told me I needed another blood patch. Life got in the way.

In 2024, I caught COVID. Long COVID hit hard. POTS arrived: blood pressure crashing, heart rate soaring, faintness, fatigue like I’d never known.

In 2025, I slipped at an oil change shop, tore my labrum again, and while doing physical therapy, felt another pull in my groin. Another hernia. Doctors dismissed me again. “Women don’t get inguinal hernias.” I knew better. I drove across the country — because I couldn’t fly — and in Milwaukee, a doctor finally diagnosed me with not one, but two: an inguinal and a femoral hernia.

Now, I live with an abdominal binder strapped around me. I still carry horrific neck pain from untreated CSF leaks. I still live with jugular vein stenosis. Every day is a balance of pain, fatigue, and survival.

Before all this, I was vibrant. I loved going out. I loved dancing, laughing, living. I wore clothes that hugged my body. I didn’t count spoons, didn’t map my days around doctor’s visits, didn’t carry the humiliation of being dismissed. I lived.

Now I grieve that girl. People say a dancer dies twice — once when they lose the ability to dance, and once when they leave this world. I’ve already died that first death.

But I’m still here. Still breathing. Still fighting. Still telling my story. Because every zebra deserves to be seen. Every spoonie deserves to be believed.

Going through all of this is why I started Zebras & Spoons. For so many years I felt completely alone in my journey — unheard, dismissed, isolated in hospital rooms, losing pieces of the life I loved. I don’t want anyone else to feel that way. This space is here so that your story can be shared, too. It’s here so you have somewhere to turn when you’re scared, when you’re fighting for answers, when you just need someone to listen. I may not be able to fix everything, but I am here to listen, to talk, and to help you find resources and support. You don’t have to go through this journey alone.