MS Musings
I am sitting at my table, looking out my window, thinking about my MS.
I am thinking particularly about its progression. How it limits me, denies me experiences and opportunities that I desperately want – and how I continue to adapt life and how it happens, to live as many of the joys that I had in the first 52 years in new, adapted ways.
It is true to say that everything that I care about, all the people, places and things that make my life so rich can, and will, still have a place. My daughters and their future families, my many amazing friends and acquaintances, art, film, music, fitness, creative expression, books, being in nature, travel, food and good conversations. Cats. All that will remain possible. It may be slower, and in different quantities and frequency than in the past - but nothing that I need is lost.
Nothing that I need is lost.
Life is different, with less opportunity for gluttony – but even those will remain. How blessed I am to have been gluttonous for so long and to have woven my web of life in such a way to have all its amazing richness be solid and infinitely adaptable. My appetite for life will remain vast, while it shifts and adapts with age and stage as much as disability.
My 30-year-old self could never have imagined the joy that my 57-year-old self would find in just sitting in the garden at midsummer, watching and listening. My 57-year-old-self is so grateful that this is so – that the 30-year-old me wanted to follow every impulse and curiosity, which were almost never about stillness.
While I won’t manage running around the park with my grandchildren, I will eagerly know them from birth at floor level. Never concerned with getting down on the floor with little people, I am going to make so many memorable experiences with them. Grandmothers don’t need to also be sure that dinner is cooked, homework gets completed, and school uniforms are clean for tomorrow. They are free to linger and live without attention to time.
Having struggled not to pass on some my own inheritance, namely the instruction not to create with abandon because of the mess it will make, my grandchildren will experience the complete opposite in my house. Every sort of art supply will be available, and we will make, and paint, and throw glitter. I suspect there will be times that I will just leave the mess for 24 or even 48 hours… so I can resurface my joy of the experience by simply looking at its remains.
I am so fortunate to have had opportunities to travel the world, through work and my own volition. While I can’t wander a city’s belly and underbelly for hours on end, I can research and plan my trip; and bring wheels to make it easier.
While all of what I have written is true, and primary for me – it lives alongside great sadness and loss. To be forced to reconstruct, contract, my story of who I am and who I am yet to become has shown me a river of grief. Having walked along it for more than five years now, I have moved beyond the point where I thought I might better throw myself into its fast-moving current, to crash against the rocks and be washed out to the eternal sea. Beyond the point where I had imagined how small my life might become, alert to all that there was to lose, imagining that my voracious appetite for life would surely wither and contort itself into dust.
Therein lies my choice, and perhaps yours.
To adapt and adjust for continuous joy and self-espoused gluttony for life, or wither and contort into dust.
Having made my choice, I align my time, attention and energy to joy. Some days it is easier than others, but whether I get there is almost entirely down to me. Life does, inevitably, bring each of us onto unwelcome and even torturous paths that no one would ever choose to be on. Those footpaths that follow the bends of the river of grief. And yet, life has also gifted us with being the author of the story we tell ourselves about those rivers, and those paths.
On the banks of the river of grief, may we each one day arrive at a moment in which we remember this. That while we may not have chosen to walk beside the facts of that river, only we can tell its story.
May I always remember that my story of choice is an adaptive story of joy and possibility. A story of adjusted gluttony for life.
MS Musings. May I always remember that my story of… | by Joette Thomas | Aug, 2024 | Medium
12 August 2024
