If you ask me to describe myself, I’ll describe something along the lines of “I’m Samira, a survivor, Sickle Cell Awareness advocate, writer, workaholic and humanitarian”. These are my work/career descriptions. Going further, I’ll add to the list — sucker for love, strong, seeker and lover of the little things in life, and dependable. This for me answers that iconic question; “who were you before the world told you who you should be?”
I am proud to finally be an adult, but sadly landing at the point where life decides not to give a damn about who you are, and is only interested in who it wants to you to be. I’ve looked forward to growing up my whole life, and I’ve always known the kind of person I wanted to be.
I take New Year’s Resolutions seriously, and periodically evaluate my life — character, principles, values, goals, achievements and dreams.
To my greatest shock and delight, I grew up to be exactly who I wanted to be, but life, society and people had other plans and expectations. They too had other ideas of how to describe me and who I should be. And that, is “disabled”.
You see, I was born with a genetic disorder, but that’s not the tragic part. The tragedy is living with a disorder that doesn’t just pick a side and stick to it. It attacks organs and body parts. It hijacks oxygen, and the opportunity to live out loud. This disorder reduced me from a once active and able child to a bedridden and physically challenged adult. Like that wasn’t bad enough, my society decided before they acknowledge my skills, talent, brilliance, strength and big heart, they’ll first acknowledge my flaws, my physical disability.
This has been my cage for years, and I cannot break free. I am constantly put in positions where I have to do and show more, to prove I am more than an illness and it’s complications. I wear a mask, to reassure people that I’m really not that fragile, vulnerable, broken and damaged. That even though I’ve been those things and I still am, there’s a side to me that is the exact opposite. If only they stayed long enough to see that side.
My biggest heartbreak isn’t living this beautifully flawed life that chose me. It’s the fact that people only look at the surface, stop at the headlines, read a one sided story, then write me off. Once I’ve been described and reduced to “the girl with the walking stick/survivor of chronic illnesses”, it’s game over. Only a few come closer, dig deeper, uncover layers, remove masks, look beyond the illness and the flaws, and make the effort of getting to know the decent person I worked hard to become.
It hurts deep to be written off before you’re given a chance. To be boxed. Judged. To be seen but not known. And I cannot tell you who inflicts the greater pain. The ones who write me off without wasting their time, or mine. Or the ones who summon a half baked pathetic courage and bravery to get close, pick interest, find out more, get to know me, even realize I really am more than just a trauma, but eventually fall short. Because they are in way too deep.
They say; “you’re something , but a lot”. You touch lives, yet complicate them. And I wonder, how one person can be not enough and too much at the same time. Where do people generate the audacity to rate or measure the work of God, who swore in Qur’an [95.4] that He created man in the best of form?
I might be disabled, but I’m yet to come across a single thing an abled person has done, that I haven’t done excellently.