Is there a way to explain how important music has been in your life without sounding cliche, or like a line from an 80's movie? Probably not, but I will try anyways.
Music has always been a fundamental part of my life. My dad would always encourage me to listen to his music, and would try and explain lyrics that were way over my head to me. Because of this, I grew up for an affection for 90's Canadian Rock music and idolized the way Courtney Love looked in the music video for Celebrity Skin (to the point where I actually wore rhinestones in my hair!)
As I grew, music became something that shaped much of my history and relationships. I worked at a small interdependently record store in my hometown for three years. The owner was almost exactly like Michael Scott from The Office, and everything was insufferable, interesting and wonderful all at once. Someone who I worked with actually set Spencer and I up on a blind-date. (We have been dating basically since the night we met, all thanks to the hunch of a friend.) Although Spencer doesn't remember this, he drunkenly sang "Brown Eyed Girl" to me the night we met, a song I remember fondly from my childhood.
Most of my weekends throughout university were spent at house parties, or local shows. I ended up dating someone for several years who was in a band, so it wasn't uncommon for me to be a show at least once a week. Although I was never musically gifted, I got a glimpse into eating pizza at 2:00 am in a not so far away city, boy-farts in a suspicious looking van, and carrying equipment that cost more than anything I had ever owned. There was a lot of heartache (note to self: never date someone in a band), but it was a really interesting period in my life. I got to meet a lot of different people, who I never would have met otherwise. Thank you to everyone who kept me company while I sold t-shirts to screaming teenage girls with 'coon stripes in their hair. You helped me maintain whatever sanity I had left.
I wanted to share a sort of playlist, or soundtrack, to my life for the last three years of my life, from my diagnosis to now. Feel free to laugh about how I actually managed to put a Boys Night Song into a semi-serious playlist about being diagnosed with pulmonary hypertension. All of these songs and lyrics have a special meaning to me, and they help me explain how it feels to be diagnosed with PH in a way I could never do on my own.
When Laura Jane Grace roars "There is an ocean in my soul where the waters do not curve," I feel the words that I have been searching for. There is a hidden spot inside of my that has not been burdened by my illness. Those spots shine when I briefly forget about what is ravaging inside of my body, and a laugh pours out of the sides of my mouth.
Sometimes I listen to "What Sarah Said" and wonder what will happen to me when I die? Who will be there? When will I die? If I get really sick, will I still be deemed worthy of love? What will it be like? It conveys all of the fears that I am not allow to say out loud.
"For just another day of no answers, and no promises in the nighttime, but in the meantime fucking hospitals and medicine" from the song 'Paper Thin' by Hot Water Music expresses all of the medical frustrations I have. I've been surrounded by mystery, and have no promises of a treatment that can really help "save" me in the way I desire. I find myself surrounded by appointments, disappointments, and dead ends.
I listen to The Dangerous Summer's "Good Things" and try to find the hope that has been harder and harder to hold onto this past year. I try to find my strength again in songs like "Indestructible" and "Don't Ever Tell Locke What He Can't Do." These lyrics help me find my armor again as I face my deepest concerns that leave me in a panic.
And when all of that fails, I repeat to myself
I'm so gracious, my name's "I dare"
My name's "I dare"
My name's "I dare"
My name's "I dare"
What songs are part of your diagnosis?
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