My Struggles With Being An Unexpected Caregiver.
Love was never on my radar. I didn’t want a boyfriend, I wanted the undivided attention from strangers. I terrorized Davie Street in Vancouver as an infamous club kid. I would have rather been propped up like a party trick than swept off my feet. Something to be stared at and talked about. When intimacy encroached, I became a twister leaving everything in a cloud of glitter and cigarette smoke. I never got too close. Not without drugs. I was too scared of what people might see. I prided myself on being self aware, but that was an illusion. I wasn’t self aware, I was just falling for my own tricks. I always needed to put on show. Even if it was just to stand my own reflection. I was the modern embodiment of Narcissus, falling in love with my own reflection while my heart turned to stone.
As I inched away from the disco haze I wondered what it would be like to fall in love. My friends and I did tarot cards on the beach and for the first time in my life I didn’t ask about fame.
“Will I be Happy?” I whispered to the sky.
“The answer is yes,” my friend said, even though she was not paying attention.
There was a spark of hope. I created the online profiles and stayed optimistic. Every night I pictured myself floating above Earth watching two bright lights moving towards each other. My soul mate and I. “Simply The Best” by Tina Turner played on repeat and I felt my future love surge through my body. Love was coming for me again, I could feel it. I had a dream I was at Numbers, a gay bar in Vancouver, and a brunette guy with a blurry face hovered in my peripheral laughing at my jokes and touching my leg. It was him.
“If we’re going to do this, then let’s do it.” He said in a muffled voice.
Love didn’t come to me like it does in the movies. It wasn’t big, loud or dramatic. It was quiet. Simple. Comforting. We sat across from each other at a restaurant on Granville Island, he had cesars to nurse a hangover. I didn’t know it but it was his birthday. We connected without fanfare and have been together ever since. In our first year together we danced together in excess, travelling to festivals and partying with a long line of club legends. He couldn’t stop touching me and told me I was beautiful everyday.
As we approach our sixth year together we share his childhood bedroom in the basement of his parents house in Toronto. We’ve been here for over a year trying to navigate a unwelcomed third party into our relationship: Myasthenia Gravis. An autoimmune disease that nearly killed the love of my life. It seemingly came out of nowhere after we got back to BC from celebrating Toronto Pride. He couldn’t walk, could barely hold a cup to his lips and had double vision. In the emergency room a doctor rambled on about brain tumors and MS. My heart pounded, I stared at the ceiling, pleading with God and the Angels of the Universe.
Caretaker is not the role I’d been hoping for. It’s a long way away from Hollywood but it’s a role my therapist reminds me I’ve played for a long time. Sandwiched between my Moms drinking and my sisters explosive anger I sat quietly trying to disappear. She reminds me of this in our last appointment as I try to explain the uncontrollable rage and resentment tumbling through my body. My life back then revolved around other people's pain. There was no room for me to grow. It was suffocating and I left as soon as I could. I feel the same way now, hiding out in his parents basement waiting for the house to go quiet so I can spend some time alone. My mind wanders to thoughts about moving back west or getting my own apartment. I want to run. I need space. I can’t breath. It infuriates me.
I miss my old life and childhood dreams. It’s cruel and ironic that the one person who took me away from my destruction is the same person who brings me face to face with the biggest enemy of all: me. I do my best to keep it together. I meditate, I pray, I exercise, I stay sober and go to meetings. I have a good job and solid support system. But sometimes it’s too much. It boils over and Evan inevitably becomes the target of my frustration.
My love is big. It fills up the sky and scrapes the ocean floors. I don’t know how to love a little bit. And the reality is, my partner is sick. He might not get better. I’m scared to live life without him. It’s not death that lingers but life. Our life. And the nights I venture out alone while he waits, sitting in bed reading until I make it back home.
How do I take care of him and still be me?
My mind races as it always does. There are good days and bad days. On the good days we take long walks and go to the movies. On the bad days he watches Star Trek and I let myself fall into a social media vortex. I’ve always had stars in my eyes and big plans. I see a bright future ahead and it makes me feel foolish. I don’t want to lose myself in fantasy. But I can’t help it. I’ve always been a dreamer.
The answer comes, like it always does, in my connection to God and growing support system. I spent most of my 20’s turning away from love. I say it's because I was chasing my dreams but the truth is I was scared to be vulnerable. I was scared to open up and ask for help. I made the choice to suffer alone and in silence. Today I make different choices. I reach out. I tell people I miss them. I tell people I’m feeling resentful and scared. I tell Evan I’m nervous about all the questions hanging over our future together.
The conversations aren’t easy, especially with Evan. I breath deep, I remember all the tools I have and I surrender to the moment. I can’t control anything, and thank God. I don’t need to have all the answers. And when I feel smothered by my life, my relationship, my recovery and the unwelcome third, I don’t need to run. There is no greener pasture. There is no solution. There's is only this moment. This crazy, sad, impossible to navigate moment.
Love was never on my radar but I’m glad it found me.