The spring season is gleefully moving in with birds chirping and dancing gloriously from limb to limb, the grass is growing tall strands of vivid green ready for its first mow and my dads red tulips are about to open to the sun in the front flower bed. I am eagerly anticipating time spent in my English garden with a touch of impatience. It will be my fourth spring and summer season living with the chronic illnesses ME, FM and disability. There was a time when four years of life seemed along period of time, however when you live with chronic illness and disability it simply is what it is. One gets used to time passing by with little to no changes in life. Perhaps the thought of being unwell and unhealed for four years time is unthinkable to some, for me it is my life.

With four years of time is also four seasons spent with my English garden. Most of my time I have been envisioning the glory that I see my flower beds designed into, with Brandon’s help of course. The past decade has been hard on the garden although it seemed to carry on in a waiting period I suppose. My dad and mom truly created a glorious garden building upon it each season for decades, the bones were well established. This fills me to this day with joyful memories and this learned behaviour is why the garden brings me so much joy.
In 2011, my dad died from a long horrific fight with cancer and this is when the garden had to begin to fend for itself. My mother had to cut back on her gardening while acting as essential primary caregiver for my father, although she managed a wee bit and had some local Leaside ladies do work in the beds each new season. Then only a few years afterwards in 2017 my mom also passed away from cancer, this was not long and horrific in fact it all happened quickly which is what you want when you have terminal cancer. I was caring for my mother the summer of 2017 although I was unwell myself having had a serious unhealed virus picked up from teaching in the fall of 2016 which caused hospitalization and many months of recovery. I recall looking at the magenta flowers of the Weigela off the back patio buzzing with bees and knowing that it needed a trim, but not wanting to spend time away from my mom as she was too weak to get herself into the garden. For a decade the garden was given minimal attention through the mountain of illness and death placed upon my family.
In the summer of 2020 while sitting in my garden during July before the long horrendous ME flare in August arrived, I had a moment of thought. It was one of my happenstance moments I have had the joy of gracing me throughout my life. I realized that the garden was my muse. Like my health and ability the garden is illusive, the flowers and blooms lasting only a period of time before their life energy causes decay. I was captivated by the colour of my garden, the luminosity of the leaves and hues of flowers in bloom. This was one place in the world where I can simply be with my chronic illnesses and disability, no expectations except to be one with nature. This was one thing I have ability to do most days that doesn’t leave me with a flare. I simply didn’t need to go anywhere, I could live my housebound life and go out to my garden with ease whenever I am able. My garden became my muse for my creative voice.
It was then, just like that I decided to heal through my garden, painting and writing, all equally providing me with joy and purpose each day. I couldn’t think of a better way to feel connected to my family both from the past and in the now than in the garden with fresh air, vitamin d from the sunlight and the soil of the planet under foot and in hand. This is my connection with the world while living a housebound lifestyle. Like in the hospitals of the early 20th century, I will spend my days convalescing in my garden while nature heals my body and fill me with inspiration in tandem.
Now all of this is good, knowing that my garden promotes healing and inspires my creative expression. However, with chronic illness such as severe ME and disability it is not that simple. I established last year that I am unable to walk and stand on my feet for any distance or length of time. This is when it was determined that I was to live a housebound life to prevent my conditions from worsening, if I want to spend time in my garden I need to be able to sit for pacing breaks. Pacing is equal to or more of the duration in which I walk or stand in resting off my feet, sometimes with my feet up for ease on the heart and better blood flow. This is when I began to survey the flow of my garden. How do I use the garden ?
Brandon kindly created sitting spots every 10 paces throughout my garden, chairs or benches mostly with arms for offloading which supports my FM and pain management and a back for support. These spots were moved until they had a double purpose, one for sitting spots of rest and the other for optimum views of my gardens for photography, sketching and painting. He assembled my last two orange benches made from recycled plastic were situated this season. One in my organic raised garden patch a place that gives me constant joy. The other bench on the lawn facing the front bed garden where my dads red tulips are planted along the front of the house and nestled beside our two front lawn gardens full of colour, privacy and resting spots for birds. Our resident cardinal pair, Little Jimmy and Little Frannie are enjoying perching on our Purple Fountain Beech Tree.
My garden experience looks and feels very different from what has come to be known as gardening as does everything I do as a person living with disability. My disability requires serious modifications such as frequent sitting, very little bending, accessibility in all areas of the garden for sitting and an outdoor garden tool cart. My days of lifting heavy loads of dirt, digging garden beds, planting heavy shrubs or trees are behind me, I have no ability to do such gardening any longer. I am glad I got in many seasons of heavy lifting, dirt digging and messy gardening boots and gloves, this truly was one of my life greatest pleasures. My new life requires giving directions to Brandon, planning flower colour combinations and designs on paper, light activity such as trimming a bloom, pacing and much joyful observation on one of my ten sitting spots in the garden.
This year Brandon has begun digging in the garden beds, I am reminded of my late father as he hauls soil in my dads old green paint chipped wheelbarrow. We are happily adding trees, shrubs, plants and flowers to my mother and fathers garden beds this year. Some of the heavy work is being done by a local landscape company who happens to be a school mate of Brandon and myself. My four years of observations and visions have been designed into a reality, shared with Brandon and made possible in the pandemic by a local small Leaside business, The Kutting Krew. In fact, once my father got terminally ill with cancer it was this landscaping company that did the grass cutting for my mom and dad.
It feels great to begin to put our creative vision into the English garden and add our touch to the garden beds as artists. Our garden beds are to be painted in with a delightful array of colourful flowers and varying textures. Given that we have a terrific amount of sun throughout the day we should see our visions growing and filling in the garden palette as summer begins.
Just in time for me to sit in my ten spots throughout the garden with the hose and water my flowers while I am filled with inspiration for paintings. Yes, the ten sitting spots were also designed so I can sit with the hose and water the garden, I suppose truthfully they are meant for a triple purpose. This didn’t reveal itself until most recently. One thing about living with chronic illness such as ME and FM and disability is for certain I will regularly be using my ten sitting spots. And in truth I will enjoy every moment of sitting in the garden, often with Dolores or Fionny. Soon I will share my sitting spots with you as well as my views of my garden beds.
Blog no. 15
About the Author
Jane Louise Holden

On Jane’s Blog I authentically write about real life experiences with loss, suffering and acceptance as a woman artist living with disability. There are times while in my studio I step away from my abstract paintings and turn towards words. My garden often inspires written words in the same way it fuels my paintings, words come to me connecting with thoughts as I sit in quiet peace with my garden.
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