You are 22-years old in your third year in campus, studying political science and sociology. You start getting these headaches but you dismiss them. You pop a Panadol Extra. Headache gone. You go through life; attending class, keeping your head as low as a 22-year old in campus can. Maybe you chase a few girls. You sit in the mess eating your beans and chapo. You boil water in your room using your immersion heater at midnight and make some instant coffee which you sip as you study Machiavelli. Or Karl Marx. Fridays you might head to your friends’ room for some liqour, a cackle, troop into town for a little jiggy – or what the young-ins now call “turning up?” The headaches keep coming, only stronger each time. The Panadols don’t help. Neither do Brufens. Often you have to draw the curtains and lie still on your bed, measuring your breathing. The campus doctor suggests you see another doctor who suggests that you go for a CT-Scan.
A few weeks later you darken the door of Kenyatta Hospital. They take pictures of your brain with that big scary machine and when he’s done, the radiologist tells you that you may need to call an older relative to come to the hospital. You tell him that you don’t have a relative in Nairobi. He says that you should go home and come back on Monday (it’s Friday) because he has to consult other radiologists. You ask him what the results are and he says, “There is something in your head.” You stare at him and ask, “Something like what?” And he says, “Hold on,” and he picks up the phone and calls another radiologist who shuffles into the room and together they hold up the scan of your brain, pointing at blotches with pens, mumbling and circling dark areas. You are handed the scans in a brown envelope and told to give them to your doctor. Outside the room, sitting on a cement bench, you open the envelope and read the report. You have a ‘Grande III Ependymoma on the left paretial’ the report says, which is just another way of saying that you have a brain tumor.
You have a brain tumor! At 22.
You sit there on the cold cement. Throng of people walk by; they are soundless, blurry, like shadows creeping through the night. You sit there for a while, trying not to feel alone. Your mom is waiting for a call from you but you are scared for her more than you are scared for yourself. You went to university to feed your brain with knowledge but all you got was a brain tumor. How do you break that to your mom?
Later, when you open the door to your hostel room you find your friends waiting to know what the doctor said. You tell them you have a brain tumor. There are a few gasps. Shock all around. Everyone in the room has heard of a brain tumor, but no one has ever known anyone with one. Silence sponges life out of the room. You sit on your bed and look out the window. The Nairobi sky is a beautiful blue. You can hear laughter from the next room. Cars honk in the distance. Life is moving on totally oblivious to your brain tumor. How can this be? How dare people laugh when there is “something in your head?”
Eventually when you are alone you will return the missed calls from your dad. You will tell him it’s a tumor. He will be a father and say what he should say, what any father faced with such devastating news would tell his last born, “you will be OK, the Lord will prevail.” He hands mom the phone and you tell her that you have brain tumor. You can hear her physically break down. You can hear stark fear in her gasp. You can feel your mother literally age as you hold the phone to your ear. Then she starts to cry. A wounded cry. She cries like she has already lost you. Your lower lip trembles with suppressed emotion.
That night you don’t sleep much. You wonder if you have a brain tumor because of your lifestyle. If you could have avoided it. You wonder if you’ve been cursed. And if you are cursed, why you? You continue asking these questions until the weak light of the dawn intrudes in your thoughts marking the first day of your life with the realisation that you are carrying something alien and mean in your head. The coming weeks, days, months get tougher when you are told that ‘that thing in your head’ is cancerous.
You go for chemotherapy, “the most gruesome experience you can ever imagine”. Your hair falls off. All of your hair. Your face turns dark, such that when you look at it in the mirror you think someone else is staring at you. Your body crumbles. Your speech starts to slur. The feeling in your left hand goes. There is pain, unimaginable pain. You feel like the devil has invaded your body. You have to go to India, you are told. Your father is a retired civil servant, your mom is a civil servant. They knock on doors. They take loans. They hold harambees. They make impossible promises. They do whatever anyone would do to save their son. And finally you find yourself on a surgeon’s table in India where they open your head and cut some of the offending tumor but it continues to grow, defiantly.
When they are done with that surgery, although successful, you are left paralysed on the right side and your speech is completely gone. You start occupational, speech and physiotherapy. You are now a 23 year old learning how to walk and talk again. You end up going for another surgery. And another. And another. They open your head so many times it leaves you feeling abused, molested and at the brink of defeat. But you hang on. You hang on for your mother and for those who are batting for you and you hang on because of that little fight left in you.
During one those long lonely nights lying recuperating in your hospital bed in India, you kill time by reading old stories on Bikozulu who you have read since “High School” and one night you drop him a DM on Twitter and ask him if he can make people aware of brain tumors.
When I received Jadudi’s DM in the dead of the night, many miles away in Nairobi, I was battling serious sleep problems at the time. I would wake up at 3am and not sleep until the wee hours of the morning. I replied to his DM and we chatted briefly but to be honest I really didn’t think much of it. I didn’t empathise. I didn’t care. It wasn’t my problem; he was a stranger, a chap hitting me up on DM at an odd hour talking about brain cancer. I had just observed my mom’s second memorial and the hurt in my own heart had embraced me with darkness so I didn’t really care about anybody else’s pain. If you had a mother you could suffer.
A year or so later, three weeks ago actually, Emmanuel emails me and reminds me of our conversation on Twitter. He also says his brain cancer had started to grow again and that his family has exhausted all their avenues and he is at the end of this rope and he needed a hand. At the same time Zawadi Nyong’o also tweets me asking me if we can help Emmanuel (@Jadudi).
I’ve had numerous phone conversations with Jadudi about his journey. We’ve talked about how it feels like to live with ‘something in his head.’ (‘You feel it as you chew, as you talk, as you yawn and even as you walk.) I ask him about chemotherapy and about how that has affected his life. I ask him all these things that informed the first half of this post.
Because of the tumor he seems to forget some simple words, like he could be searching for the word, “bed” in his memory and he would say, “Uhmm…this thing…uhm , what do you call, uhmm…” and I would ask “Bed?” and he would say, “yes, bed!” And quite honestly that made me so damned sad.
I asked him what you are probably thinking now: Are you scared? He said “a little bit.” I asked him what scares him the most and after a long pause, so long I checked my phone to see if the call had dropped and just when I was thinking that maybe his silence was my answer he said faintly, “I’m scared of dying..” He said it in a near whisper like he didn’t want death to hear what he said. Then he added, “I’m scared of dying not having met my dreams.”
His tumor has reduced him to shuffling around with a walking stick, slurring in speech, a boy carrying the dark face of a stranger. But he continues to go to school because that’s the only thing that still gives him a handle on his dream. School is his straw. His hope. His family have sold land and cows, borrowed from everyone they can borrow from, even those they would be too proud to borrow from and that desperate path has led Jadudi here, to us, the Gang.
He doesn’t have much time left. He needs our help to fly out to India for a fourth brain surgery. He doesn’t want to wait. He wants to fight. This is our chance to join a fight that isn’t ours, but an important fight nonetheless. He needs 1 million shillings by Saturday. We all have the power to help this boy. We have the power to show our compassion to a stranger in need, because deep down I truly believe we all have good in us. Let’s dig it out. Let’s be the humans we are and extend our humanity towards Jadudi at this dwindling hour.
You don’t need loads of cash to help. Check your M Pesa balance. You have 204 bob? Send it. You have a loose 4K that you will burn by end of today? Send it. You have 130-bob? Mpesa it. It will mean a lot.
There is something he said to me that I keep going back to. When I asked him what kind of help he would like me to accord him, all he said was, “I still want to fight. Please stand by me.” I have not forgotten those words. I will never forget those words. Nobody has ever asked me explicitly to “stand by them.”
And so I’m standing by Jadudi through this dark storm. Please join me.
MPESA PAYBILL 806200 (Leave slot for ‘Account Number’ blank)
This monies will land into an account run by Africa Cancer Foundation.
Please contribute and share this as widely as you can.