So, here is a bunch of recent responses from those who hear about my MS-life, first time. Some are great, in total solidarity, written, told with the will to empower the MS-person. Some hint at the general understanding of chronic illness, disability in ableist perspectives.
On the rare disease day - February 29 - I shared a reel on Instagram talking about my diagnosis, noting how I received, how I am continuing. I put smiles in the center, photos with the lovely dogs, and with mom. I added Mercedes Soza's Gracial a la Vida... There is no exaggeration: I am grateful to life. This does not mean that I am happy. Indeed, I am not concerned much about happiness. There was a time when I had this aspiration to anchor on a happy life - whatever that means. But since looking at politics - as science - reading political ideas and political thought, trying to understand the claims of politicians to make the subjects, citizens, communities as happy as whatever it might be, reflections of thinkers, ideologues, philosophers on individual and societal happiness I came to a point where happens is as blob as the state. Perhaps, more than that - for, you can depict the state in its physical, material forms to an extent and even in intervals. But you cannot do so for happiness.
Then I started to taste life with its bitterness, sad moments, evil experiences, goodness as a totality that needs joy and joyfulness for unfolding.. This state of being is as strange as the life of a butterfly - it is momentous, it might last just for a second, while it extends and expands infinity. It is a matter of temperament and not choice, preference, or some material, physical assets. Of course, it takes reflection, consideration, relationality to have it - you cannot possess it, own it, you can just have it and share it.
So, I have been trying to live with MS joyfully - those who are familiar with this immune system disorder would immediately think that this is bizarre, and trying to do is futile. MS - how can we live joyfully with this disease when you face sudden and braking pains, aches, constant fatigue, sporadic numbness and tingling. And above all when you live with imbalance - as I do for about seven years. Well, it is possible. You might start facing the fact that this world has never been perfect and that life has never been without problems, sadness, violence. But with or without MS we all live in this world and in our lives we face various, painstaking issues - mostly irresolvable. And inbetween these encounters, when we take a breath, look at the sky, see a flower, smell the salt in the sea, smile at a dog, cat, bird passing by, acting together with the ones who share similar concerns for a better world the joy that comes is invaluable. It is creative, refreshening and empowering.
I find the joy in walks alone and/or with someone I do not need to talk, with someone whom I can feel the earth in silence. I find joys in animal rescue activities with the ones who share the care for animal welfare, I find joy in sitting, walking with the two rescued dogs - Pote and Milo - who are living with me - Pote since April 2022, Milo since June 2023. I find joy talking to them and when they seem to talk back, feeding them, playing with them. Everyday that I take them out for walk, no matter how much numbness, imbalance, pain there is I feel that it is going on OK with every step I take.
I am not being faithful and/or resigning to fate - whatever it means. It is all about being stubborn for hope, insisting on hopefulness for I have come to think that it is a luxury for people like me to be hopeless!
Hopefull soon!
