Being Your Own Powerhouse

The story of Lauren

You might have seen the meme, or remember from science class, that “the mitochondria is the powerhouse of the cell!” It converts food into energy, so we can convert energy into strength. But what happens when it doesn’t?

My name is Lauren and I live with Central Core Disease (CCD), an invisible disability and rare neuromuscular disorder causing weakness in the muscles used for movement. With CCD, the mitochondria in your muscle cells are depleted, meaning you have to work harder at everything most people take for granted.

Although not diagnosed until I was about 20 (after a misdiagnosis when I was about 12, and no diagnosis prior) CCD has affected me since birth. I spent the 2.5 months after I was born in the neonatal intensive care unit, where I went through a muscle biopsy, sudden cardiac arrest, being fed through tubes and was baptized, because I wasn’t expected to live.

Although in severity, my CCD case is now considered mild – you probably wouldn’t suspect anything about me is different until you see me try to open a heavy door, or get up from sitting on the ground, or walk up a flight of stairs (stairs are my non-mortal enemy) – in reality, it results in me having about 33% of the strength and stamina of an average person my age. Not even 33% LESS strength, just 33% strength.

When I heard that number in my early/mid-twenties, it was a bit upsetting, but also blew my mind. I had done dance and community theatre in high school, graduated from university with a degree and a diploma, held a festival and event planning job and had a full social life – all with 33% of the average person’s strength! Living the balanced life I wanted with significantly less energy was (and is) persistently tiring, of course – but when that 33% was quantified, also validated my struggle and made me feel proud.

I spent a lot of my life resenting or trying to ignore CCD and how it shaped my life, feeling like it made everything I did harder. But now in my early/mid-thirties, I can appreciate more how it shaped me as a person. My muscles may be weaker, but having to always work harder at everything made my resilience and determination stronger. My strength may be at 33%, but I live 100% of my life. My mitochondria may be depleted, but I’m my own powerhouse.

Merriam-Webster dictionary defines “powerhouse” as one having great drive, energy or ability. If you ask me, two out of three ain’t bad 🙂

Being Your Own Powerhouse