When I sat to reflect on the last year, I was having some writers block. I just didn’t know where to start. This year has been so out of the ordinary so It’s hard to put 2020 into words. From my perspective, everything felt so different though, at the same time, it felt like everything stayed the same.
From an outside perspective looking at my life during 2020, this year basically looked the same as the last year. I spent a lot of time in bed, a lot of time with my dog, a lot of time doing medical things, a lot of time knitting, a lot of time juggling taking a class with my precarious health. I spent a lot of time following the same old routine as the years prior. My highlight reel isn’t busting at the seams of exciting events. Though there were definitely some highlights like my best friend getting married, most days were pretty ordinary.
Being a person who spends a large amount of time at home anyways, the whole staying home thing wasn’t drastically different from my life before the pandemic. The exception was making it hard to get out and do public access work with River. Training is always ongoing and so important to keep up. Other than that, my life stayed pretty static. I didn’t go through the rollercoaster that many people did where they would enjoy it for a bit then get bored and fall into a bit of a rut. This has been my life for many years so that rollercoaster has long been over with for me. In fact, other people being home made me feel less FOMO, the fear of missing out. Everyone else was home, what could I be missing out on? However I would never relegate someone to a homebound life just so I feel like I missing out less. The one most notable thing for me was missing seeing people in person, missing giving my grandparents a hug or seeing my close friends.
What was different about this year is not what it looked like though, it’s what it felt like. The weight of the pandemic laid heavily upon my shoulders as it did to many others. Every decision I made was weighed carefully. Was the need greater than the risk? Every risk was thought out and predetermined. We don’t know how this virus would affect my body so we tread carefully, taking as many precautions as we can, hoping for the best outcome.
Because of this fear, there was heaviness in the air. I think this is something many of us shared. Though it wasn’t always in the forefront of our mind, fear clouded our everyday life, always adding a slight fog to our outlook on the world. There were many things to fear; fear that our loved ones could be next, fear we could unconsciously be passing on the virus, fear that despite every precaution, the worse could happen. The whole province waited on baited breath for the announcements every Thursday on the state of the pandemic, either letting us breathe a sigh of momentary relief or the fear would grow.
Though every single one of us experienced this year completely differently, there was also this feeling of coming together. Despite the 6ft abyss separating us from other humans, there was a sense of togetherness. Suddenly, many of us were thrown into similar situations and could find new ground on which to relate to each other. Essential workers could relate to each other on offering their services during a pandemic. People working from home could relate to others working from home. Those of us staying safe at home could relate to others doing the same. Though this doesn’t erase the lines between us that still permeate society, we had common ground. A lot more than we’ve ever had before.
We learned to work around the pandemic to keep the world spinning. We Skyped with our close ones and kept tabs on social media, having more free time to connect virtually since we couldn’t in person. Jobs and schools that had never been accessible to homebound people now are so they could accommodate to the growing population of people needing to stay in their homes. In an attempt to bridge the gap necessitated by the pandemic, big changes were made and these big changes were allowed by big creativity and big thinking outside the box. To me, a disabled person, it showed that a lot of limitations previously set upon me were not because they were impossible but rather because they weren’t willing to go the distance, to innovate to accommodate. Now that a large portion of the population needed this, the changes happened so quickly. I hope that society can learn from this to open up doors for people with disabilities that had always been locked shut.
This year though has arguably been difficult for all of us. Being stuck in the house, away from family and friends, left to your own devices to entertain yourself, sure, it was maybe fun for a few weeks but I’m sure for most, it lost its novelty. Though quarantine hasn’t changed much for me considering I spend a large amount of my time sleeping and an even larger amount of time at home, this wasn’t new to me. What was new though was that looming fear dispersed through the world like a thick layer of fog, making our reality harder to navigate. After all this, I felt like I really needed Christmas this year. I needed the joy, the family, the tradition, the hope. I needed to end the year with a highlight. I needed Christmas.
Going into Christmas this year, I had a huge bucket list of things I wanted to do during the holiday season. From decorating the house to baking cookies to watching movies to going to see Christmas light displays, I wanted to do it all. This isn’t really abnormal though. I do love Christmas and I always have. Every year, I looked forward to our traditions that we had with family every year. Inevitably, the holidays have been different since I’ve gotten sick because my body just can’t keep up the same way it used to. You know how people say that “your eyes were bigger than your stomach” when you eat more than your body can handle? Well, I guess I can say that “my brain was bigger than my body” when planning this years holidays.
So the bucket list was made, all the things I wanted to accomplish before Christmas came. I had planned the perfect picturesque family Christmas; nothing can go wrong with that right? Wrong. Though I ticked most things off on my list, it wasn’t all joy, there was lots of tears too. “All I wanted to do was look at lights” I would decry, “why does my body always have to protest?”. There was many days where all I wanted was to do something but my body just couldn’t keep up. I was asking too much of it and it was catching up to me. People with chronic illness are often told to “just push through” but there’s only so much pushing that can be done. It’s like trying to run away from your own shadow: as much as you try to ignore it, as much as you try to move forward, your shadow is always there, you can’t shake it.
With my particular health journey, my health is a ball, slowly rolling down a hill. Things are constantly changing. New things to deal with crop up here and there. I can’t predict what the future will look like and 2020 has showed this even more than ever. Could we have ever imagined what this last year has brought?
Reflecting on this last year, I’ve come to realize that it’s not inevitable death that scares me, it’s leaving behind a life unlived. That’s why, in an odd way, people being stuck at home was reassuring because I didn’t feel alone in that; I didn’t feel like I was sitting and watching life pass me by since not much was happening in the world anyways. I wasn’t alone in feeling the time pass me by. This also led me to realize how important it is to walk this journey with other people. As much as I can be an introvert, life’s simple pleasures are really best enjoyed with the people closest to you. I try to celebrate the little things and make the most of what I have. Having people to hold your had through it makes the moments even more special.
Trying to find the balance between making the most of things yet respecting my bodies needs and wishes is a hard challenge. It’s challenging to figure out how much I can push my body to do things I want to do without it making things worse. It’s challenging to figure out the balance between resting and doing. My heart tells me one thing and my brain tells me another. I have a long list of things I want to do but an equally long list of things that just aren’t realistic for my body. It’s striking a balance between “living life to the fullest” but not driving myself into the ground to the point where I spend way too much time needing to recover.
This balance escapes me most of the time because the only way to find it is trial and error. I do things, I overdo things, I pay for it, then I learn. But what I learn is limited to now. When things change so quickly, your set of rules must change with it. However changing those rules can only be done, again, through trying. All we can do is our best at the moment, try to do what we can when we can and not be ourselves up when we can’t do so. Yeah, there will definitely be more days of where the frustration and disappointment builds so high that it has no choice but to come out in tears but there will definitely be more good days too, days that make everything worth it and that’s what we need to hang on to, the moments that make our heart sing, that make us forget all the hardships because we are filled with pure joy. Those are the moments I will keep chasing. But the biggest thing I need to remember is that these moments don’t need to be anything spectacular, it doesn’t need to be a fancy trip to Hawaii or luxury experiences, it can be cuddling up and watching a movie with my family, it can be playing with my dog, watching his tail wag with pure joy, it can be in all sorts of moments, big and small. Even on the down days, where my body won’t cooperate and where rest is needed, that outnumber the days of adventures, those days are the ones that allow me to have the fun so it’s time to be grateful for them too even if the gratitude can’t be found in the moment but later instead.
All I know for sure is that I will keep trying. I will try again. I will also fail again, that’s inevitable too. I know with my limitations that there’s no way I can leave every stone unturned, I won’t accomplish every dream I’ve had. I’ll never get that medical degree I’ve always dreamed of or go on to make a big difference or travel the world. My highlight reel will never resemble what most people’s do, it won’t be the picture perfect representation of what society sees as living life to the fullest. What I can do though, is make the most of what I do have; whether that’s a handful of good days in a week or a couple good days a month, I can find joy in those moments so that, at the end of the road, I can confidently say that though I didn’t accomplish nearly what I dreamed of, I lived a life full to the brim of joy and love, doing what I could with what I had surrounded by the people who love and support me; what more could I ask for?
Based on this, I’ve decided that my word for 2021 is balance. I’m not looking to find the perfect balance (I think that will always be elusive). I want to give myself grace on the bad days but celebrate the good days. I want to find more independence but allow myself lean on others for help. I want to have little happy moments interspersed between the big ones. I want to make sure to love my people as much as I can when I can. When I’m feeling stressed or afraid, I want to allow my loved ones to lift be up in their strength and love. I want to not just wait for the magic moments to happen, but to make them myself.