Free from the strings, ties and knots of resolutions, goals or timelines, 2020 began as every other year with Brandon preparing a lovely roast with fixings on New Years Day, a simple appreciation for another day to experience life. It began, with the acceptance of how the concept of time effects chronic illness, pain and disability. It has now been years since I have followed a clock, routine, schedule or timetable, my swatch rainbow of watches buried deep within a drawer so as not to hear the tick of its mechanism. The truth being that, the quicker I accepted the absence of time in my life and began living in the moment, the more positive and accepting of my losses I became. Living in the present, from moment to moment and accepting it for what it may or may not be is my greatest and most coveted tool for living this new life with chronic illness and disability.
Looking back, this year has filled me like a refreshing glass of cold water on a warm day. Full of gratitude for simple moments, a joyful experience on a good day, exploration of my new lifestyle and quickly became best year I have experienced in several years. I have so much to be grateful, appreciative and thankful for because I am alive and have life. I began quarantine before the onset of the pandemic and everyone else and have remained isolated. I realized like being hit over the head with a cast iron frying pan that if I wanted to live, that I needed to completely and with dedication stay away from others during cold and flu season. Unable to take the flu shot due to my chronic illnesses and being immunocompromised I was at high risk within public settings. This was before Covid-19 hit, fear of catching a cold or flu quickly became fear for my life, the simple little life I live. If I got the Covid-19 virus, living with an unhealed virus in my body I likely would die, as my bodily functions and organs have already been taken over by the unhealed virus. In reflection of 2020, life is what I am most grateful for.
Staying alive with the dedicated and full support of my husband, Brandon has been the main objective for the year. In fact, very soon I will have been living housebound without leaving the house for a whole years time, all 365 days in the safety and comfort of my own home. Once being alive had been secured through hours of work, research and many failures I needed something new to focus on. This is when the year became focused on finding purpose. The reason for living, the search for my authentic gifts and abilities I have in my new life. During the year I unknowingly dug deep into my subconscious down into my authentic self, stimulated my intuition like shaking an old snow globe and made dreams come true while living a simple life.
Living housebound has taught me much about myself and given to me my new lifestyle. Once I stopped trying to leave home, save up energy reserves to go to a glorious doctors appointment (for that is all I left home for) or try to walk to the park a mere 400 steps total, was when this year turned into one of great appreciation. That is right, the very thing so many people are complaining about in this unusual time we call a pandemic, staying at home is what has created change in my new life with disability. Of course my staying at home doesn’t end with the pandemic like everyone else, therefore I have much more invested into my housebound life. It is my new life, not by choice but a fact of life if I want to stay alive I must live a simple life. Simple seems better to me and is what I chose in 2020 with ease.
Looking back, I have been learning how to live housebound with lots of rest, much sitting in meditation and spending most of my time pacing. Basically, this is doing nothing, saving energy, rebalancing and rejuvenating depleted energy stores. However, those few other moments in my day which I am not doing the above mentioned pacing have given me such heartfelt joy. In these small simple moments I have even accomplished life long dreams that were hidden in the depths of my subconscious. These gifts to me are part of the fabric of my new life, woven in with a bright wool thread tightly with care and love in each stitch. It warms my heart sharing with you my simple joys in words, lets look back together like Alice spying through a large keyhole in Wonderland.
In spring 2020, my studio moved upstairs to what was my childhood room facing north overlooking our English garden. My disability prevents me from any lifting at all, funnily I used to flip 200 pound tracker tires and lift heavy loaded olympic weighted barbells for fun and exercise. Now, I have no ability for lifting at all. Therefore, Brandon brought my studio upstairs on his own, the tag team days are gone. I long ago accepted my new kind of strong which far outdoes my old physical strength. My studio however, quickly became my peaceful space where my needs were supported and creative living encouraged. A lifelong dream for a lovely peaceful inspiring studio filled with light and visions of gardens, fulfilled. I truly believe this is the moment my year changed course and where my dreams began to shimmer a light on my new lifestyle.
Once, my winter flare and studio had time to settle, I began modifications to my art process. By summer I had almost perfected my new process that fully supported my disability and I successfully tested it out as I produced a series of small wooden panel paintings. To my shear and utter delight, I even had a small number of art buyers, a lifelong goal accomplished, people responded favourably to my paintings. My new life was beginning to be more joy filled and less flare filled. Sadly, this was also the time when my GP doctor refused to refill my medications prescribed to me by my specialists and was requiring me to break my quarantine supported by my specialist to come to his medical office building in the pandemic. This was pivotal in my year as this is when I advocated for my health, safety and wellbeing, refusing to comply with this harmful, disrespectful and negligent request by this man who calls himself a professional.
By August, I was declining daily while Brandon worked tirelessly for 2 months trying get my medication refilled. By the time the ME specialist was able to act on our requests due to pathetic provincial government medical funding (good luck Covid-19 long haulers as the provincial government continues to sit on billions of dollars), I had gone into my second flare of the year. My art practice would have to wait until I was able to work in my studio again. Although, I had been faced with great mistrust in people and professionals, and filled with disappointment, frustration and anger, I accepted this abomination as I have everything that has come my way. The good with the bad, as it always is.
Thankfully, I was able to end the year back in my studio after 4 months of rest out of the studio. During my flare months it gave me much time to reflect on my art and my process, observe the delicate beauty of flowers, and take a photos from time to time. Once able bodied again I took to the studio and immediately began to conceive my next series. I was even able to produce a series of Christmas Cards for 2020, another lifelong dream accomplished. It is with pride and excitement that I sent out my hand painted cards to my art buyers from the past year, showing my gratitude for their support and encouragement to create my paintings.
Being in a flare for nearly half of the year I needed a creative expression other than my painting, something I could do to express myself when I was in bed or on my chaise resting, an outlet that I could practice anytime. This was through words, having a life long interest in the written word it was actually something I likely had been meant to do but writing report cards for hundreds of students several times a year had become my means of written communication. Completely lacking in any creative flow, personal voice or expression.
Journaling keeps me in practice when I am in a flare and the addition of writing prompts when I become more able body has produced some interesting writing. When in reflection I have much time for thought, resting and pacing my body to support my disability is the time when I begin writing in my head. Words are always floating in and out of my head, attaching to one another. Emotions igniting to engage words with meaning. Thankfully, I have now have a process whereby I am able to write daily and use the words to develop meaningful, thoughtful and captivating prose in short memoir style stories.
This year as my last flare was winding to an end, I developed this WordPress page at to house my writing as well as a platform for showing my art. I have self published six pieces of writing and I am pleased with the emerging stages of my writing. Yet, another dream accomplished in my simple lifestyle. I am satisfied with my writing abilities at this stage in my recovery with ME and I am encouraged by positive feedback to continue on my writing journey. Not only a year ago I was only able to write using poetry from time to time without becoming mentally overstimulated. Being solitary and living a housebound lifestyle writing allows me to participate in society through words without threatening my life. This past year I have come to realize that nothing and I mean nothing, is worth causing another flare. My specialist diagnosed my condition as severe, with no room left testing flares. Another flare may very well leave me bedridden or worse, like many of my peers with ME. I aim to do my utmost best to prevent flares in my near and distant future, living a stable housebound life without risk to my health or safety.
Looking back, once I had stopped trying to leave my property for small and meaningless experiences and settled into a contented calm simple life housebound, my garden revealed to me its purpose. It was such a glorious day, the green gold spring flower stems were beginning to show themselves from beneath the shelter of leaves, the grass was becoming alive a in bright electric green glow and tall majestic trees were in bud and beginning to show the world their splendour. In my moments of rest sitting with my English garden, observing and witnessing its hidden simple joys, my garden was indeed the friend and inspiration I had been looking for in my creative life, ever-changing, vibrant and vivid in colour. Evolving, blooming and dying off from moment to moment, much in the same way energy within my body functioned elusively. My garden became my muse for my drawings and paintings and often inspired my writing themes in tandem. Always within reach either through a window or in body, living housebound allowed me to see my muse always ready for whatever the garden wanted to share with me and we always share moments endless of heartfelt joy.
In 2020, I learned to appreciate the simple moments. These simple moments were filled with purpose and gratitude. I subsequently became filled with heartwarming joy, so much so I could feel the warmth inside my body. As I move into winter with a flare behind me I plan to spend days in my studio drawing and painting, hopefully keeping that warmth generating on cold winters days. I have a series of vibrant and vivid paintings on paper and panels paintings filled with colour that I look forward to creating and sharing on My Muse is My Garden page on my blog. There are already a few pieces of writing I have begun to write for self publishing on Jane’s Blog this winter. Truth be told, intriguing and thought provoking themes come to me often in quiet meditation, an endless supply, I could be writing lifelong.
As my garden hibernates for winter I will look over it in my studio watching the wildlife happily enjoying the Canadian winter in my yard and the trees gently swaying in the cold winters wind. Dolores and Fionny snuggled in close to share in warmth and love. Although, I live in the moment I am already anticipating the excitement of spring in my garden, new seedlings to be grown by hand under table lamp indoors, garden beds redesigned with vivid colour combinations, new growth for documenting and capturing by camera. The inspiration my English garden will bring, the vibrant colours and textures for my eye and paintbrush come the spring of 2021 is a pure and utter joy to ponder. For now I will appreciate life, live with purpose and demonstrate gratitude for all the dreams fulfilled and giving me direction in the new year. I plan to step with purpose and ease into 2021 while holding my dreams close to my heart, warming me like a newly stoked fire and filling me from toes to head with joy.
‘May you step with purpose and find joy in all of your days’
Blog no. 6