Today is World Lupus Day. A day devoted to worldwide recognition to an illness would normally stike my self-absorbed and cynical heart as weird and, maybe, pointless. Normally, i would whink what difference does a day make and what's special about Lupus?
For my brief stint into social work, i havce encountered a lot of NPO's that tried to deal with illnesses of various kinds: AIDS, cancer, autism, leukemia.... But weirdly enough, i only really knew what Lupus really was when i met a person who fought against it.
As that person dug through the scales that cover my heart and won me with her natural beauty that permeates every single bit of her, i decided to learn more.
Lupus is an invisible illness. It is still largely mysterious and unresearched. It damages the person body, making it so that it deteriorates fast and brutally, while their defense system attacks them. Its a cancer without the flamboyance. It damages their organs, their hair, makes them loose weight, and the ability to do anything without being hit by chronic unstoppable pain. Makes them bedridden, unable to eat properly, forces them into doing tests and treatments that are basically chemo but have a slightly lowere chance to stop the illness. There is no cure.
But the worse part is the utter indifferenc e or disdain with which it's seen. Since i learned about it and discussed it with people i have heard the true dark side of humanity. And i am not the ill one. Ive heard people talking about how it is a "fake disease", how it can be cured but its not worth it cause it's not as diffused or easily exploitable my phramacutical companies as other diseases are. I heard people saying how trying to diffuse awareness about it (like i try to do) is a waste of time and money, cause its not as pressing as other issues. How giving kindness to a loved one who's ill and trying to fight for making their life better, because they have made yours better too by simply existing is pointless and "a burden" cause "in the end they will die". I heard people addressing victims of lupus as psychosomatic, liars, attention seekers. I saw the system ignore them, cause there isnt a cure on the horizon and the symptoms are silent and quiet while letrhal. Cause it isnt glamorous enough to call for a pitiy party.
I remembered why i hate people.
But still, the main reason for me knowing about this also reminded me what love is. How a< person, no matter what their troubles are, and how distant they are from you, can improve your life exponentially even just by existing and deciding to share their existence with yours. How their fight isnt all they are, how they can be beautiful, gracious, charming and shine with a brighter light than anyone else, that gives meaning to every second you share with them. A meaning that nothing and no one else can give. And not cause they are ill but because they are magical in spite of their illness. I have known such a person for more than a year and i've seen her fight against lupus and being strong and beautiful. An angel and a magnificient woman that makes me happy and feel lucky just for knowing her. And want to give her back even a tenth of what she gives to me daily. Even only by lketting the world know that this illness exists and it touches the lives of people who need help.
If you had at least one person in your life that was important and ever cared about them, think about this and atr least talk about ti with someone else. Do not sayt that it's "life". It's not how its supposed to be. BVeing cynical, indifferent or callous about this is even more dangerous than the illness itself. You kill people with indifference too, and you put them through torture that they do not deserve. You dont have to give money, for now. Just acknowledge this and diffuse the awareness. Love helps, and theres so little of it.
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