Jonah Rono’s Fight for his Neck

The year 2005 should have been a good year for Jonah Rono.

He was a robust 25. He worked at the Hilton. He had married his campus sweetheart. They had just gotten a baby girl, wild-eyed and eager to see the world. They gave her a kickass name, Nikita, because she was born to conquer the world. We would shoot down a shitty constitution that year. It was a good year, or it should have been.

If you look at your feet and then touch the back of your neck, right where it joins with your shoulders, you will feel two parts of your spine sticking out. Its how Mother Nature did it. Its her design. So what if you felt something one time when you weren’t looking down. Something lumpy and strange. You want it to be a big pimple, but you know it’s not.

Rono was 25 when they found a tumor in his neck. The first diagnosis ended up with pneumonia drugs, and someone suggested malaria. But the thing in his neck was growing, and it was getting scary. I don’t know what comes to your mind when you think of a tumor, if you ever. To me its like a little explosion, something that grows like a baby in a womans body. Its first a sinister idea, where your cells conspire to fuck with you. Then it becomes something real, small and unseen to the eye. It grows, from a small pimple to a big one, then it becomes something else. Its a conspiracy.

Jonah Rono had pnet sarcoma, a type of tumor that wants to eat up your spine. It should go, he was told, and after he went under the knife in 2005, it did. His father had died in the same hospital where he went to get rid of that first tumor, but Jonah intended to be the Rono that got out of its doors alive. For a time his cells gave him peace.

In 2008, just after he had gotten his first proper job at the Boma Hotel, he felt it again. I think he had been afraid of it ever since he saw the radiographs of his neck in 2005. It had become his boogeyman, and three years after it first introduced itself to him, it was back. This time they told him it was cancerous, and it was out to kill him. The rounds of radiotherapy and chemotherapy, to fight off a small cluster of suspicious cells congregating at his liver too, left him deeply scarred. The darkened veins on his hands remained, loud traces of a past he wanted to forget.

Last year he felt the familiar tug again. This time it seemed to be pulling even more furiously on his right hand. By the time he was diagnosed and told his tumor had now shifted, he was in more pain than he could remember. The kind of pain, he told me last week, that even life on morphine does not cure. Pain that stays with you every breathing minute, that takes over all your senses. Pain that becomes you. Pain that eats up your masculinity, and often turns you into a small child, writhing and crying for someone to make it all stop.

He fought it, this time with just radiotherapy. Less than a year later and the tumor hit back. Volley after volley of cancerous cells just striking his spine. It stretched the nerves to his right hand so much that he can now hardly move it, but that’s not even the worst part of it. It had also spread to his lungs, meaning he couldn’t even fly to India if he wanted to. He needed to. He still does.

See, here’s the thing about PNET sarcoma. It is a small tumor that forms around bones and soft tissues, and it often appears in people below 25. But Jonah was 25 when he first got it, right behind his neck. What followed was a decade-long fight to save his spine, and himself, and one that he fights still. Disease is that it often forces the patient to learn about what is eating them. Its a natural reaction, the need to know. If you sit down with Jonah, you’ll probably learn more about his tumor and the lung cancer that followed than you would from research. He has lived it, for ten years. A sit-down with Rono, and his wife Judy is a lesson in courage. Here’s a couple that had to make room for a tumor almost as soon as they made a small pink room for their daughter Nikita. They have known the despair of a tumor in Rono’s spine far much longer than they’ve known each other. Its been their constant companion, and enemy. They are now both rightly experts in the conspiracies of tumors in the spine, and can spot bullshit from a doctor as soon as it spews from the mouth.

The cancer in Rono is now as old as his daughter. She knows, although she doesn’t fully understand it yet. How in the world are supposed to tell your children that you are sick, and that whatever you have is eating at you all the time? It forces you to sit with your neck leaning on a mountain of pillows all the time, and has rendered your right hand nearly useless from all the pain and anguish. The second-born, a three-year-old boy with gushes of adrenaline soaring through his body, probably thinks the chemo lines on his fathers lines look somewhat badass. They do, in their own way, because they tell the story of a man who has spent a decade fighting something inside of him, and he has no plans to quit yet. But these are kids who have only known a pained smile from their dad, struggling to stay brave for them.

I think the most cruel thing we human beings ever did was to tie ourselves to a currency system. It works, in most ways, when we are buying avocados and bananas and paying for stuff. But it is just outright cruelty when someone, like Jonah,?is fighting for his entire being. When there is something inside a person that is threatening to consume them, the last thing on their mind should be money. But sadly, the world we live in always comes down to that. We live and die by how much we have. We survive by who we know, and what we can get. We only get to see tomorrow if our bank accounts have the right number of zeroes. That’s the tragedy of being.

Even worse is that within a system like ours, despite our potential, we have done little to make sure someone like Rono gets treated here, at home. Near his family and the people he loves. Consultation fees here will drain you before you even get to the badly scribbled prescription. That prescription will cost you an arm and in Jonahs case, almost literally. The drugs will be eating at you, and eating you, and you can do nothing. You can only sit and wait, and read. Yet this cancer thing seems to be everywhere, eating at everyone. Its not just the hereditary kinds that need to keep you up at night, its everything. Rono’s family doesn’t have a history of cancer, and his kind of cancer seems so rare even most oncologists had never seen one. The point is, any cell in your body can become it. I know of someone whose cancer started in the thumb. In the bloody thumb! Nothing is sacred to these cancer cells anymore.

Rono needs money. He needs empathy and sympathy too, but first he needs money to get better. Hes going through chemotherapy right now to fight the cancer in his lungs long enough to allow him to fly to India. That costs almost 100, 000 bob everytime, and India will cost another 2.1 million bob. And thats the lower price. If you want to help Rono, send whatever you can to 621451 (Paybill Number, Account name: Rono Medical Fund).?Then join the conversation on #Give4Rono.

It might be as little as you can afford, and might just be a blip in your day, but it might just be what he needs to get the right treatment. It will right a situation that should never have been in the first place, and help Judy worry about whether her husband is eating right, or is sitting right, and not where his next chemo drugs or surgery costs will come from. It will save her some sleepless nights. It will let Nikita and Kingsley know their real father, not the man the cancer is trying to turn him into.

While you are at it, get tested. If you can, get tested for everything. As soon as you can. Follow the rules of our simmering middle class, of eating right and exercising often, and praying when you remember to. But remember that your cells are conspiring against you, and you need to jump right ahead of them. You might not catch every possible cancer in your body though, but that’s the reality we all now have to deal with. May we all live long and prosper. Or at least just prosper.

Owaahh, 2015.