MELAS (Mitochondrial encephalomyopathy with lactic acidosis and stroke-like episodes)
I’ve always felt like I drew the short end of the stick in life, but now I have a tangible reason to back up that sentiment. MELAS affects approximately one in 4,000 people, and it feels bitterly ironic that it runs in my DNA. The irony deepens, as this genetic affliction specifically targets females in my family. The universe seems to be playing a cruel joke on me; at fourteen, I sought an escape from this world, but now that I yearn to live, it seems the universe is conspiring to snatch that desire away.
My aunt, my mother’s sister, was diagnosed in her early thirties. The progression of her illness has unfolded before my eyes like a grim prophecy: strokes, comas, partial paralysis, cognitive decline, memory loss — the litany of symptoms is unending. Witnessing her decline has been like peering into a crystal ball, seeing a future that feels inexorably predetermined. There is, of course, the slim hope that I might escape this fate, that the disease might skip a generation. However, my mother’s constant comparisons between me and her sister — our similar traits, our shared artistic abilities, even our matching mental health struggles — make it hard to cling to that hope.
I haven’t been diagnosed, and that should be a source of comfort, right? Yet, I’ve experienced symptoms that mirror my aunt’s at my age. It’s hard to dismiss the nagging worry when every sign seems to point towards an ominous conclusion. My mother wears a brave face daily, but I see the fear lurking in her eyes. The spectre of MELAS is a constant, silent companion in our lives.
Within 48 hours of my aunt’s diagnosis, her weight plummeted to half of what I weighed, whether from the disease itself or the induced coma that followed. Seeing a loved one in such a state is heart-wrenching, but knowing that it could be a glimpse of my future is devastating. I made a rather easy decision. If and when I fall ill, I will sign a Do Not Resuscitate (DNR) clause. As someone over 18, I have the autonomy to make this decision. I refuse to cling to a life that has long since slipped through my fingers.
Watching my aunt scream in frustration, unable to recognize her own sister, and enduring the relentless poking and prodding by hospital staff who seem more intent on administering pills than providing real nourishment, is a harrowing experience. She can’t voice it, but I know she struggles to even recognize herself in the mirror. People around me advise choosing to exist in the positive, to focus on the good. But it’s easy to dispense such advice when their lives aren’t precariously balanced on the edge of a genetic abyss. I want to die on my own terms, not when the disease warrants it.
I do admit the looming destiny of my demise, does encourage me to do all the things I am afraid of. Living life to the fullest so to speak.
- Have a fake wedding ceremony (I’m not evil, I won’t make anybody a widow)
- Lose my virginity
- Hug a clown
- Go sky diving
- Attend a rave (even though I hate loud noises and blinding lights)
- Have a one-night stand
- Commit a small crime (graffiti a Hello Kitty or something)
- Travel all of Asia
Of course, I have way more to add but, it’s a start. I guess I just wanted to tell whoever is reading this to do at least one thing you are afraid of and that if you ever see me streaking down a road in broad daylight, you know why…
