The Birth of Joy Days  

I awake and long for the feeling of ease when I discover the horrific events that haunted my mind were just nightmares. A discovery that brings warmth and comfort with your morning stretch and coffee in hand. Today I am not so lucky. I open my eyes and begin to cry, reminding myself that this truly happened and this hell is our life. My body frozen in fetal position under the covers. Dried tears are stuck to my cheeks from falling asleep crying and waking up crying, our new routine. There is a constant aching in the pit of my stomach knowing this type of pain doesn’t subside. This pain cannot be fixed with ice cream, flowers or a weekend away. This is the pain I will carry for the rest of my days on Earth. How does one deal with pain this monumental? I am not strong enough for this, I repeat to myself over and over. Maybe today is the day I shave my head. Maybe tomorrow. Maybe I’ll just let it fall out.

I find myself trying to find comfort in my once familiar bedroom. The light fresh tones on the walls of our bedroom felt muted, heavy. The excitement of moving into our new home, our dream home, wore off and I felt imprisoned by the same walls. The couch I use to snuggle up on and find relaxation on at the days end now became a reminder of how weak I am, how dependent I have become, a painful reminder of the life I use to live. I am surrounded by constant reminders of how lucky I once was, yet never knew it. I took health for granted. I walked around sure that I would live to see my 80th year. Now, I just want to live through the next 24 hours. My thoughts become shorter and darker, and then they stop all together. I am numb to the world, to my life, and this home of mine, my body and soul forced into survival and autopilot takes over. “Sara Machnik, date of birth December 15th 1989,” I repeat to a new strange face each day at the hospital. I sit in the same waiting room chair and feel like a hollow shell letting the waves push me around. I sit in the chemo chair and still, I feel nothing. I raise an eyebrow when people reach out and offer emotional support. Perhaps it’s odd they feel more emotion than I do, but I reassure them that I am fine. I force myself to go through the motions.

The way I viewed the world was an art piece that was smashed into a million tiny pieces and then burned as the ashes flew into the sky before my eyes. Where I once found exquisite beauty I now find sorrow and agony. My soul was placed inside a strange, unfamiliar body. A body I couldn’t connect with. I’d like to go home was all my mind kept circling back to, like a child longing for the safety of their mother. How does one move forward when your body is no longer your home?

My body once belonged to me. Now it is poked and prodded, it is injected with chemicals and swallows drugs I cannot pronounce. My eyesight deteriorates, and I use a cane to walk around the block. I lie when my neighbour asks what happened. The goosebumps on my freshly shaved head run down my spine when a different neighbour offers the sentiment, “At least you didn’t lose your hair.” I adjust my wig and fake a smile. A liar born out of apathy, another trait to add to the unrecognizable personality list. I am surrounded by loved ones, yet I am so incredibly alone. I am a prisoner locked inside this mind, a mind I don’t recognize. I don’t want to live this way, I cannot live this way.

At first I cracked, and then I broke. I fell into a dark depression, I reached out to mental health supports, but still continued to fall into an endless black pit. Depression turned into suicidal thoughts and when I mentioned to my oncologist again, they reminded me, “You’re on the waitlist for the mental health support team,” so wait it out. Time was not on my side, and I was unsure if I was going to see the end of the waitlist.

My partner and I drove to local botanical gardens for a walk. Out of nowhere, emotion arose in my stomach and I thought I was going to be sick. I was lightheaded and sat hunched over on the curb next to our parked car. My head was spinning and my hands were trembling. Perhaps the drugs in my body were still reacting and then I looked up at the sign. “Welcome to the Royal Botanical Gardens.” The day I was diagnosed, we came here and sat on a garden bench crying. I hadn’t thought about that day for six months and here it was, emotionally swallowing me whole. My mind was emotionally unavailable, so my physical body reminded us of the emotion that this place held. My body continued to feel emotion while my mind couldn’t. In various places, different triggers, my body would react to people, places, words and smells. With time, my body and mind became more in tune with each other again. Allowing myself to remember unkind events. Once I allowed myself to feel again, I unravelled all-together. I shattered. It was terrifying, traumatizing and then, all at once, tender. I felt a softness arise in my soul once I started building my new home from the bottom up. I had a unique opportunity to plan everything about this new home of mine. I wanted a sturdier foundation than last time and I wanted morning coffees overlooking a view of the lake. I wanted joy. So, I got to work.

I could no longer wait for someone else to care for my mental health, I was going to have to care for myself, somehow. I began implementing joy-based practices into my daily routine. I read a book each night that consisted of a simplistic list of joy that can be found in every day. I awoke each morning and stretched in front of a window with my favourite view overlooking my backyard and my favourite oak tree. I made gratitude lists during phone calls with my mom. I savoured sweet moments with my loved ones and snapshotted them with my hands when I wanted to remember something. I realized I needed something to look forward to, specifically between each round of chemotherapy. Joy Days were born.

We chose different towns to drive to and discover with fresh wide eyes. I longed to see colour again. I wanted to awaken my inner child and taste the fruit juice of life. I jumped into puddles, I played arcade games at Niagara Falls, I ate cotton candy on a ferris wheel. When a severe allergic reaction to my chemotherapy landed me in the emergency room twice, I had to cancel my birthday trip to Montreal. I was crushed, and then we pivoted with what we could work with. We went to a Christmas Market for the day, took photos of gigantic Christmas trees and let wonder fill our eyes like the twinkling of each coloured string light wrapped around garland. One of my favourite nostalgic memories was complex fort building in my childhood basement. We made a fort in our living room that night, we collected cushions, string lights, and blankets from around the house. We turned on a familiar animated movie and my mind escaped to a simpler time. I began booking Joy Days formally into my calendar, like a scheduled appointment I could not miss.

It’s now been over a year since chemotherapy, my hair has grown and my mind has calmed. Alas, Joy Days have continued for both my partner and I. Last weekend we visited a local garden centre. We bought tickets to the petting zoo and spent time petting goats and wondering what life would be like as a bearded dragon. We bought tokens to play in the arcade. We collected tickets we won at each machine and laughed about which prize we could get. Over a thousand tickets won and maybe a single red lollipop we could share. We ate doughnuts on the way home, a perfect day, my inner child sighs with a smile. We saw a bench overlooking the lake on the way home and stopped for a walk. We find ourselves releasing our grip on schedules and find beauty wherever we are. We cannot control everything life throws at us. We pivot and pivot again — the dance of life. And while I may not always be the lead, you better believe I’m not spending my life on the sidelines. — Sara Lou