Losing My Voice: A night of messy joy in a life of chronic disability

I lost my voice on Saturday night, in the most literal of ways. I woke up on Sunday, throat raspy and muted from the night before. When I was younger and this was a more common occurrence, my mom would always joke that it was a sexy voice. On Sunday morning I sent voicenotes to her and my partner telling them that I was worse for wear and would need to reschedule our plans that evening. Before I fell back asleep for another desperate hour, I grinned to myself – the sexy voice was back in play.

Now in my mid-30s, enough life has passed for me to experience something again and realize I haven’t felt it for quite some time. I’ve lived through my eras of all-encompassing wanderlust, and I’ve lived through eras of furious hustling, yearning to build a structure of stability for myself. I’ve lost myself to the throws of infatuation, and I’ve grown up at the side of a long-term love. I’ve abided by oppressive diet and exercise regimens, and I’ve thrown them all away to establish a new relationship with my body.

Always packing light

Perhaps most relevant to my life right now, I’ve struggled with developmental disabilities I didn’t know existed, and I’m now grappling with the disabilities I know I have. Well before ever being diagnosed with ADHD or autism, I knew I had highly sensitive needs. In the big picture, I would throw myself with abandon into my passions. Friendships, student councils, new experiences, artistic explorations, academic opportunities. Every feeling was novel and every achievement could be desired. I went out late, I danced in clubs, I met my friends for hangover breakfasts, I backpacked through Southeast Asia.

I envisioned myself with a big life, researching what it would take to become a travel writer. Or perhaps an archaeologist. Certainly, a book editor (I found an intensive program in Banff!) No, definitely a sex therapist. I thought through every endeavour and every life to the end. Sometimes that would be it for me, realization striking that it wasn’t the right fit. Other times the voice in my ear would point out that the vision wasn’t clear enough. If I couldn’t see the entire life laid out before me, it was an unsafe avenue. Many times, I took concrete steps, joining clubs and organizations to gain experience, applying for programs, changing my major, or applying for jobs.

This is where the hustle would kick in, an immersive experience where I would become a motorized vehicle powered sometimes by interest, sometimes by the incentive of a secure life, and sometimes by both. For me, that fire can only burn so long. Time and time again I have been run into the ground. As a teenager, I would often feel sick, throat sore, head aching, and body fatigued after a period of intense socialization, extracurricular pursuit, and academic vigor. If I wasn’t depleted, I felt alive, absorbing new experiences with eyes wide open and a heart on fire.

When I moved to Toronto for university, this quickly became unsustainable. After dropping out of university I pushed myself very successfully through a college diploma thanks to, frankly, a haphazard combination of talent, intelligence, and personal chaos. When I finally entered the full-time workforce, I learned quickly that I had to pace myself more acutely than most of my peers. With all the energy in the world of a woman in her early 20s, there was still a very hard maximum on my social and professional capacities or I would find myself deeply unwell.

Just an excuse to show off my quarantine cookies.

With the best of intentions, I could find myself in a groove temporarily but would always end each cycle in burnout. I didn’t understand at the time why I could never balance the demands of full-time work, deeply important personal relationships, personal health, household needs, and everything else that goes into these lives of ours. For a few months, or even a year, I would think I had finally cracked the code. Life is not stable, and the lack of stability would inevitably throw me off my axis; my life was still built for the best of times and not to suit my actual needs.

After a decade in Toronto, my partner and I moved back to my hometown, and my life got a bit smaller. After two particularly challenging job changes, I went back to school to finish my bachelor’s degree at the age of 30, where I promptly received a very necessary ADHD diagnosis. During this time, the world shut down and we all isolated ourselves for the greater good.

Further away from our friends and feeling the emotional and physical tolls of my troublesome cycles of highs and lows, I was happy to take on a more subdued life. We had entered our 30s, so some of it felt inevitable. My partner, Max, and I got a dog, and then bought a house. The demands in our lives increased. I continued to learn more about my own needs and became deeply aware of the harm I had accidentally done to myself over and over again. I enjoyed my life in a quieter way, already easily overwhelmed by professional, social, and personal commitments that had us stretching our time, money, and energy in the ways that adulthood so often does.

I graduated from university and re-entered the workforce as a student advisor at the same institution, a job I loved. The position is intense and rewarding, somehow utilizing a wide cross-section of the mishmash of skills I have accumulated throughout my life and career. I care for the people I work with and the students I support. The world of academia is important to me.

Despite all of this, last May I stopped sleeping and by September I was barely functioning. I have been on a medical leave ever since, struggling with persistent fatigue and insomnia, intense and disruptive physical and mental health symptoms, and receiving an official diagnosis of autism in March. My chronic back pain has at times been improved by strength training via physiotherapy, but my capacity is so low that it is challenging to maintain. I am in much less distress than I was last year, and I understand my needs so much better, but I am still struggling with the unpredictability and persistence of chronic illness and all it entails.

After an extended period of deep rest last fall, I began engaging in personal activities I hadn’t touched in so many years. I felt creativity re-enter my bones as I began crafting, colouring, decorating, and writing. My energy was inconsistent, but I threw my all into my personal projects as I felt the fresh snap of life biting at my cheeks again. By December, I crashed.

The following months have been complicated as I have worked with my health team, tested medications, and fervently defended my struggles to insurance companies and the government. The latter has been dehumanizing, at best. I have moved from the “imminent crisis” stage to the “Wow, is this still happening? What is wrong with you?” stage. I am still struggling to feed and care for myself, but I’ve found the best balance I can right now. I have enjoyed lowkey but wonderful evenings with friends or family and needed a full 48 hours to recuperate. I currently spend the majority of my time at home. Most of my days are small and I lean into the shimmers joy and contentment, but I have been fearful of Big Occasions because I understand the toll they are likely to take.

When a dear friend of mine, Jasmine, invited me to her bachelorette party, I was scared. She was one of the most important people in my early life and is someone I have been grateful to reconnect with since moving back to my hometown. Her bachelorette was a chance to meet her community and celebrate an important milestone in her life. We would be having a barbecue, going to a private karaoke room, and hitting up a drag show.

I prepared myself as much as I could. I thought through the potential comfort pitfalls of different outfits, I looked up the event’s destinations, I talked to Jasmine ahead of time. I ensured it wouldn’t be weird if I took a rideshare from door to door as we moved along, so I could get the most out of my energy and mobility. Jasmine gave me the okay if I wasn’t up for attending on the day-of. I knew there would be places for me to sit at each location. I wrote out my timing, my packing list, my schedule for the day. I packed my earplugs and my charger. I told myself I could exit the festivities at any time I needed to.

I drove myself to Toronto early and got ready in a friend’s basement, donning butterfly clips, shimmery green eyeshadow, fairy wings, and cunty sunglasses. The theme for the bachelorette could be described Gay Fairy Charli xcx – if there was an event that called to me, this would be it. I felt decorated in the best way, juvenile its enthusiasm.

I took a rideshare to Jasmine’s sister’s apartment and was welcomed warmly by a mass of her family and friends. We took another rideshare to the karaoke bar where I sat in a mood-lit corner for hours and sang nostalgic classics at the top of my lungs with a room almost entirely comprised of strangers. Jasmine and her fiancée sang a High School Musical tune with passion and studied finesse. They looked so happy.

It had been a massive day for me, and I felt my energy dropping quickly. I was texting Max that it was probably time for me to head out when the group was suddenly rounded up to leave for the final spot. I decided to join and the party hopped in another rideshare and landed at Crews and Tangos for the part I was most nervous about, the drag show.

Crews and Tangos had been a favourite Toronto spot in my early 20s, but I was unsure if the stimuli and potential lack of accessibility would push me to my brink. I imagined myself in a crowded room, perched on a tall metal stool with no back support, pains shooting sharply through my hips while sound, people, and lighting overwhelmed the rest of my senses. Only a month prior, a walk to a beach had resulted in me staggering to my waiting parents through the sand, sobbing grotesquely. I told myself that I could leave the club after five minutes if I had to.

Were the fates shining on me, Saturday night? We waited in line at the door for all of 30 seconds, showing our IDs and having our bags searched before making our way inside. I had forgotten that most people don’t go out until at least 11 pm, so at 10 pm the room was lively but manageable. We identified an enormous booth with comfortable seating right beside the main stage, and were able to move our crew in.

Reinvigorated, I sat supported and danced and sang for hours. I felt alive with celebration and surrounded by queer community. I shimmied up to the stage and brushed fingers with the drag queen as I tipped her. I screeched as a performer gave us a handstand-split against the backdrop. Propped up by the booth and arms raised high, I closed my eyes and sang my heart out, filled with love and happiness for my friend, her wife-to-be, and for everyone in the room with us. Black ink from my hand stamp ran in messy beads of sweat down my chest.

When I hit my final wall (exhaustion_final_FINAL4.docx), I could barely get out of the booth. My whole body ached and my lower back had given out. I slowly made my way out and stabilized myself before catching a rideshare back to my home for the night. My fairy wings had been forgotten at the club and my clothes from the night smelled of sour sweat. Getting downstairs, undressed, and onto the futon was a challenge. I made a joke to myself and noticed my voice was gone. I barked out a raspy laugh.

I managed to make the drive home on Sunday and have been laid out ever since. Every muscle in me is depleted and my brain is fogged. Chronic illness has taken a lot from me. I need almost every ounce of energy to survive, everything I have has gone into job after job and now into recovery and perseverance. On Saturday night, another guest and I joked knowingly to each other, “Heaven forbid someone with a disability experience a messy moment of joy.” So much of our existence is spent practicing our version perfection, attempting to prove real worth and need to loved ones and the institutional powers that be.

But as I type now, the faded ghost of the entry stamp wears on my hand. I’m splayed on the couch, abs aching weakly. I speak and the gravel of my voice announces hours spent singing at the top of my lungs. I am still very sexy, very alive.