Stories

Living With Rare Disease : How I Learned To Treasure Every Moment.

April 2, 2025

By Megan Marjorie

While driving home from the movies tonight, the sun started to rest behind snowcapped mountains as we sang “Watermelon Sugar High” near the top of our lungs. It was a “picture-perfect moment” in my rarely “picture-perfect” life.

Like I habitually do in times like this, I took a little video to make this memory something permanent. Something I can look back on during “hard days”.  Because I only know how much this moment is worth. Because of unbearable stretches of time where all I could hear was the beep of the vitals machine, the puff of IV pump next to me, and the hum of florescent lights above, I know how much moments like this mean. After emergencies that lead to worries. Worries that lead to an ER bay.  An ER bay that led to hours behind white sterile walls. White sterile walls that lead to days feeling imprisoned.

Through those days, moments of physical anguish came, making me worry if I’d ever see life beyond those white sterile walls again. If this was the last sight I would see. As death sat on the “visiting the patient chair”, I begged him to go away.

I only know the beauty of a “karaoke party” during a family drive because I know the kind of pain that only chronic illness can bring. I’ve hated my rare diseases. My body. And at times, my life for that fact. But as I’ve once again gone deep into the trenches of another battle with my health, I’ve been pondering on the fact that maybe it’s supposed to be this way.

I’m not saying I wouldn’t give away the physical pain and the suffering. I’d give it away in a tachycardic heartbeat. But, just as illness changes your body, maybe it’s meant to change your view on life. Like it has for me. Because of my rare disease I know little moments mean the most in the long run. I believe the truth in the saying “this too shall pass” … It may pass like a kidney stone, but it will pass. I know that every day has something beautiful in it. You just have to look around to find it.

So many other truths have only been forged in me in the most scorching of fires. My physical health is, and I think forever will be, the greatest challenge of my life. But I firmly believe that beauty can, will, and does come from terrible things.

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