From Ma, With Love is a campaign celebrating recollections of feminist tales and lessons, passed down to us by our mothers, this Mother’s Day. The first edition of this compilation has 16 heartwarming stories. ‘So(u)ldier’ by Shahin is the thirteenth story in this series. You can download the entire publication here.
A souldier, that is what she is. Wondering what a souldier is? Someone who fights a daily battle but puts all their soul into it.
With physical illness, you must be either totally ignorant of how life-threatening your condition is or you just must learn to ignore it. Either way you must live it, sometimes painfully and sometimes hopelessly, but you live the life you have received. I suppose being born with a rare condition makes you special, so special that your father abandons you and no one else comes forward to share their life with you.
She was born with myelofibrosis, “a serious bone marrow disorder that disrupts your body’s normal production of blood cells, resulting in extensive scarring in your bone marrow, leading to severe anemia, weakness, fatigue and often an enlarged spleen.”
Myelofibrosis is an uncommon type of chronic leukemia — cancer that affects the blood-forming tissues in the body. Myelofibrosis belongs to a group of diseases called myeloproliferative disorders. Many people with myelofibrosis get progressively worse, and some may eventually develop a more serious form of leukemia.
But that is all that it was for her, a condition. And conditions can be overcome, with a zest for life, love for your dear ones and more importantly, with dreams and living those dreams.
You and I cannot imagine what it is like to have short term memory loss, be fatigued, be dependent on someone else financially. To live a life hoping someone will love you, accept you.
I am talking about my cousin sister — my mother’s sister’s daughter. She lost her own mom at the age of 5, and she was raised by my mother. She had to quit formal studies because she could not memorise simple things.
After my mother passed away, she lived with my grandmother. She tended to my grandmother and took care of her despite her own difficult health. Running a home with an elderly person is difficult for most of us in good health, and yet this souldier did it with great aplomb.
After my grandmother’s death, she moved in with me. She could barely walk from the kitchen platform to the living room without collapsing. But she fought her condition with all her might, and today I can get back to work because I can leave my ten-year-old son in her care.
She runs my home so I can earn; her medications and tests and emergencies are very expensive and to keep her alive and maintain her health, I had to have a job. I work in an office, and without her support back home, I would never be able to step out. She has had my back ever since she moved in.
When I am down and lonely, and my husband and son come and hug me, I wonder — doesn’t she feel like being loved and hugged by someone who will just love her without expecting anything in return?
I cannot get her married because I have not yet found someone who can take her in with the baggage of medication, the days of not being able to function like a normal person, months at the hospital and without an expectation of wanting anything but love in return. I can only hug her and say, “I love you, sis” in exchange for all that she has done for me over the years. I can only salute her spirit, the spirit of a souldier.
I want to be free, but patriarchy and capitalism tether me!
Pride with OFC, 2022
Who decides what queerness looks like?