To any young person, a single pimple, or blemish is enough to throw them into a state of frustration
and distress. Yet to my friend Basit, this would be the least of his concerns. He suffers
from EB, a genetic condition that causes uncontrollable outbursts of wounds and blisters across the
skin. His skin in turn struggles to repair itself and he is thus left covered in open
wounds across his body.
Another name for my condition is actually "Butterfly baby" because the wounds are everywhere
and you're just wrapping the bandages, it's like a cocoon.
Butterfly Boy, a story of patience. Diagnosed as a baby, Basit has lived with the condition
for over 25 years. There is no known cure for the condition and many have to live with
the excruciating pain their entire lives. What's it like living with this skin condition?
It's... It's hard because I have to basically... I'm immobile for the most part. So my day
entails me being on my bed for the most part. I can't really walk. You just look at the
way people walk and run and you can't help but think I wish I could do that. Like how
does that feel?
As difficult as this was all to hear, the treatment process bus it goes through is another
tribulation in and of itself. For hours on end, he sits like this. Cutting, wrapping
bandaging, and applying ointment just to maintain the status of his condition. Basit do you
do this every day?
Every day, every day if I don't do it every day, it pusses and oozes and smells and stuff.
So I've got to do it every day. On a bath day, it takes six hours. On a normal everyday
thing, it takes like four hours.
I couldn't fathom the magnitude of what he goes through every single day. I couldn't
imagine what it was like to be locked in a room for up to seven hours on end, crouched
over in painstaking treatment. It kind of reminded me of the story of Ayoub, the great
prophet of Allah, who was also afflicted with an agonising skin condition that left him
bedridden and outcasted from society. Yet despite it all, his heart was able to remain
firm, a challenge that Basit finds himself facing every single day. How important is
faith to you in your condition?
I think without faith... Yeah, I if I'm brutally honest, brutally honest. What is... What would
my... What is my... Objectively what is my life without faith?! I would have considered
suicide a long time ago because I mean, I don't know. For me personally, I'm speaking
for myself. What is it just all going through all of this pain, the day by day, going through
these hours of just you know hardship and pain and suffering and seeing others like
suffer, suffer because of you as well to a certain extent. What's the point? What's the
point? If there's no faith? What's the point if at the end there's nothing there? What's
the point?
Islam gives meaning and purpose to his suffering like nothing else could. It was simple, stay
patient today and attain Allah's pleasure tomorrow
when I hear about the mercy of Allah. When I hear about his promise. The thought of being
able to be with Him, persevering and struggling to be with Him. Like faith, it's something
that's so easy for me to reconcile with as well. It's like this is not our utopia, persevere
have some Sabr (patience) and inshallah inshallah on the Day of Judgement inshallah we'll see
the fruits of our labor. This gives me purpose.
The perseverance Basit shows is nothing short of inspiring. He understands that life is
a test, and he's in a race to stay steadfast until the very end. Two years ago, Basit's
older brother Milad, preceded him in this race and sadly passed away. Like Basit, Milad
also suffered from EB, but in his case, it was much worse. And how was that like to lose
your brother?
It's really hard. It's really hard in that sense when you lose a part of you. Not having
him around that support. I learned so much from him. I think a lot of my ability to tolerate
and my strength comes from seeing him being so much worse than I am. When I would think
of how much he would suffer and struggle. And like it's just, Allah chose both of us.
He just picked us out from all of the creation just picked us out and giving us bonus points,
bonus points, just bonus points. On the Day of Judgement insha'Allah for him especially
imagine the rank that he would be with his patience as well that I witnessed. So like
when I go to his grave and I see that, I think to myself, instead of me weeping for him being
there, like he's weeping for us still chained into this struggle.
Throughout his tribulation, Basit has managed to stay firm, not only staying patient spiritually,
but also in his daily affairs. He has graduated from university, made many friends and even
performed Umrah with myself a couple of years ago, but behind his story of resilience, there
is also one other secret that keeps him going forward.
Religion has been the bedrock of my life, but my parents are the other factor. Like
Alhamdulilah for them. That's all I can say. Alhamdulilah for my parents. They made it
so I don't, so I don't have to worry at all. When I have these problems and stuff like
that, I can only think about these problems. In my mind, like I don't even have to think
about them. They never complain, I don't even... it's so normal, they make it so normal. That
normalcy is something that I am so grateful for them.
If you could give them one thing what would it be?
I pray for my parents I pray for my parents all the time like Firdaus Al'Ala. If they
could get Firdaus, If they could go to Jannah, more than anything, for me for them to reunite
in Jannah more than anything. For us to reunite in Jannah, because for me, deep down I feel
like this is a test and I can feel that this is a test. And I thank Allah for making me
feel that it's a test. The real-life, the one I will actually wake up with my family
insha'Allah is in the next life. Can't forget that. I can't forget that.
Basit's story is truly a modern example of patience that we can all admire and learn
from. I ask Allah to raise Basit amongst the patient, to make him of those whom He loves,
and of course those who are rewarded in abundance