At the end of the day we are all but undeserving fools. Undeserving of the innocent love of our children. The loyalty of our spouses. Undeserving of the bountiful favours of the universe. Undeserving of His Will, of His Grace. Of the warmth of sunrise on our skin. Of our hearts that pump red and our kidneys that filter death from us. Yet we are still here, not necessarily because we are special, but because it isn’t time. We somehow wake up daily on a bed of ingratitude. We toil. We forget. We pray at the altar of the gods of our selfishness. We constantly forget our smallness because we are already sold on the fleeting folly of our invincibility.
Our bodies will betray us. Eventually. It’s inevitable. Our hearts will break. Or stop altogether. Our souls will blister with jealousy and fracture with anger. Our bodies are dolls. They will break if they are meant to break. Or they will slowly grind to a halt; one organ at a time. There’s no telling when.
I’m thinking these thoughts as I sit on a chair by a bed at Nairobi Hospital’s Renal Unit ward. It’s the last days of July, the dying days of winter. It’s just a little after 6am in the morning and outside, the weather is uncertain, dithering over whether to continue being as cold-hearted as it has been the past month or to thaw its temperament and let us shrug off our jackets and scarfs and sweaters.
The man lying on the bed is undergoing dialysis. The air in here is thinned by the sound of a machine plugged into bodies. The dialysis machine—an ugly contraption—chugs and hums as knobs rotate and blood streams through tubes that run from his chest and into this machine that cleanses it, filters it and sends it back to his body. There is a mysterious plastic jerrican at the foot of the machine that begs a question I’m unwilling to ask.
The man has no kidneys—at least none that belong to him. He has one kidney which belongs to his sister. It was a good kidney for a while until it wasn’t. He’s 45 years old with a pale face, now shaped by persistent suffering; his eyes are the colour of diluted hibiscus and slightly bulging, like someone who has seen many unbearable things. He’s in pain but not the kind of pain you get when you stub your little toe on a door or the pain of losing a loved one. It’s a different genre of pain. When I ask him to rate it on a sliding scale of one to ten he says, “I don’t want to say ten because then it’d mean I’m dead so I will settle for a nine.” He’s been in pain for many years, all manner of pain, psychological and physical but now the kind of pain he is in is pain in his backbone (we will come around to this later), which he bears with a wrought smile, with labour and with silent duty.
I’m here because he wrote me an email a couple of months ago saying he was chronically ill and he had a son and that he didn’t have enough time left and he wanted his son to know him and what he has gone through in the past 20 years battling Chronic Kidney Disease.
In fact, now is a good time to stop referring to him as ‘a man” or ‘the man’. His name is Josh but you would know that even if he didn’t tell you because of the chipper nurses and hospital staff who stop by mid-stride at the entrance of his curtained room to quip, ”Sasa Josh?” “Josh, how are you today?” “Josh, is everything okay?” They have known him for long now because he comes for dialysis every Monday, Wednesday and Friday.
“Three-quarters of the guys I started coming with for dialysis are all dead.” He tells me.
“The life expectancy of patients suffering from this disease is five years. I’ve had liver problems since I was 20 years old.”
It started with constant and intense itching on his back. An itch so bad he would remove his shirt and scratch it against the rough surface of the mud house he grew up in in the village. He grew up in an area between Kendu Bay and Homa Bay. I know the place, seeing as I’m from Kendu Bay. The area he speaks of is a scattering of stumpy green hills, cows grazing afoot, the sparkling lake in the near horizon. I don’t want to say it’s picturesque but it’s certainly very beautiful to look at. His father was a straight-backed army officer in Nairobi married to three wives. He’s the third last born in a family of eight. His nuclear family is close to 300 in total, he tells me; siblings and their children. “You guys can’t fit in a Whatsapp Group,” I tell him even though I was supposed to have just thought it, not said it. But he chuckles. Growing up he wanted what you wanted; get an education, get a good job, lead a better life. And he got that.
After the itchiness came the random intense migraines that would leave him weak. In 1997 a doctor said, “I’m worried about your blood pressure,” while thoughtfully tapping a biro pen on a notepad. At 20 years old he was too young to have high blood pressure. It was also bizarre, given that he was very active in sports and that he didn’t have three wives. In 2001 he got very green around his gills and was put on medication. In 2005 his kidney function dropped alarmingly. His doctor was suddenly sitting up in his chair. That’s how you know that shit is serious, when your doctor no longer slouches. In 2006 he saw a girl he liked at a conference. One part feisty, two parts beautiful. Just his kettle of fish. They got married. In 2008 the doctors made a decision that his kidney had to go after finding it riddled with cysts. It resembled the surface of the moon. So they chucked the useless kidney and binned it.
He was working in Dar then, a cushy job with an American non-profit. Not long after, he went back into the hospital because he was feeling horrible. Blood was drawn from his forearm and tests were run. Now there is something called Estimated Glomerular Filtration Rate, or eGFR. It’s how your kidney function is tested and any normal person will probably score 60 and above. If your eGFR drops below 15, you may need dialysis or have a kidney transplant. Turned out his eGFR was 5%. His sister offered her kidney. Tests were run and they were a 90% match. They did a harambee that collected 1.8m in a hat and soon they flew to Gujarati, India, in the belly of a big snubbed-nosed bird with his sister and another relative as a caretaker. They arrived at dawn.
The dialysis machine starts beeping furiously and he looks up at the monitor then reaches out and presses the little red button that summons a nurse.
A nurse shows up immediately. I was there for over two hours and he must have pressed that red button three times and I was amazed at how fast they got there. It’s almost like they were standing behind the curtain waiting. The red button reminded me of the old fable of the boy who cried wolf. If I was hospitalised I suspect I’d be that boy, the kind of annoying patient who would abuse that red button, because at night I’d be pressing it constantly and if the nurse showed up and asked, “Yes, Mr Jackson, what’s wrong now?” I’d say, “The night is long and dark and deep loneliness drowns my heart,” and she’d sigh and, hands akimbo, say, “Please stop pressing the button, this is the third time. You only press the button in case of an emergency!” I’d whine, “but loneliness is an emergency, nurse Faith” (aren’t most nurses called Faith?) And nurse Faith would say evenly. “Look, I have other very sick patients who need my attention, if you press it for shits and giggles you might be taking me away from someone who really needs me.” Me mournfully, “But I need you, nurse Faith.” Her, admonishingly “I meant medically.” To which I’d say, “here, touch my heart and tell me if that’s not medical. Look, just sit with me for a minute will you? Just one minute.” Then she’d say firmly but with a small smile, “I can’t. I’m working. Don’t press that red button unless you have to, okay? Now try and get some sleep Mr Jackson.” Then she’d turn on her heel to leave and I’d call out, “don’t forsake my lonely heart, nurse Faith.” I’d hear the patient in the next bed laughing softly and nurse Faith chuckling and shuffling down the hall, her Crocs-clad feet squeaking on the clean hospital tiles.
Anyway, they were in India. They cut his sister open and removed her kidney and then they cut him open and transplanted her kidney in him. They then sewed him up and he started taking immunosuppressant drugs because sometimes your body will start stomping petulantly, ‘I don’t want! I don’t want!” when you introduce a foreign organ in it. He describes the doctors in India as scrupulous and the facility highly sanitised and efficient. Gujarati, he remembers as being very dry.
“How does it feel to have someone’s kidney in you?” I ask him. He laughs and pauses in thought. “It feels normal, I guess,” he says. “But the body knows there is something new in you, like an intruder.”
It was good, then good turned into tough. The nausea, loss of appetite, he would swell up with oedema, his legs and arms and face taking on a cartoonish form. He was constantly sick; constantly lying down, holding onto things to catch his breath while he walked, feeling constantly under the weather. They got a baby at some point, a son, an heir. They gave him an Arabic name which means ‘the wise one.” He was overjoyed, of course. He looked like him, his son. He would bounce him on his knees. Watch him sleep in his cot like an angel. Stick a bottle in his mouth—a bottle of milk, that is. It was funny, that while his kidney constantly failed him, his heart swelled with the joy of seeing his son grow. In 2011 he lost his job; funding etc. The following year he got a nasty infection but he didn’t know it, at least not immediately. What he remembers about that morning was his wife bringing him a glass of water, him reaching out for it and then distinctly looking at the glass leaving his hand in what seemed like slow motion, following the trajectory of the glass of water as it headed for the floor and then the moment it touched the floor and shattered, and then he passed out.
He woke up in Mater Hospital.
“How I discovered I had been in a coma is I remember my brother coming to visit me at the hospital and me telling him how I couldn’t wait to watch the Champions League and him saying, ‘uhm that champions league already ended’ and me saying, how now, unless it happened last night while I slept and my brother said, ‘you have been in a coma Josh’…I asked for how long and he said, “three months.”
“What does being in a coma feel like?” I ask him. “What can you remember?”
Here is how he described a coma. “A coma is not like sleep,” he tells me, “it’s weird because I remember some things vividly during my coma. I was working for the FBI, investigating a crime. I remember a beautiful tarmac road running through a barren landscape. I remember being abducted and being thrown into this massive warehouse where these guys were siphoning people’s blood.”
“Were you dressed in black suits and white shirts like the FBI in the movies?” I ask.
“I don’t remember the colour or even what I was wearing but the white light people apparently see before they die? I saw it. And I heard a voice asking me why I was fighting so hard, why couldn’t I just give up? Then another voice told me, don’t worry, you will be okay.”
“Were they deep voices, like the one that spoke to Abraham drawing his attention to the lamb in the bush?” He chuckled thinking I was yanking his chain. “ I’m told that tears used to come out of my eyes a lot,” he continues. “That I’d be crying.”
“Can you hear voices when in a coma like we see in a movie where a relative holds the hand of someone in a coma and speaks to them.”
“No. I couldn’t but I could sense energy. You can feel the energy of a loved one. I’m told that one time some relatives of mine who aren’t good people came to visit and I started convulsing violently, so they had to leave. That’s the bad energy I was feeling. But when I finally came to, it took two more weeks of coming in and out slowly and in that time I could hear voices and see blurry images before I went under again. I also remember hearing Catholic hymns and I thought I might have made it to heaven.”
When he came he couldn’t remember anything or recognise anyone. Not his wife. Not his brothers. Not the life he’d had. He had a baby’s mind. So his relatives had to start gently introducing themselves and giving background. Someone would come and say, “Hi Josh, I’m Paul. We worked together.” Then he’d ask, “Oh, right. Where did we work?” Then the person would say, at such and such a place. Then he’d nod but not register anything. The guy would say, “last time I saw you you were with Linda* in town?” Linda? He’d ask. The guy would say, “Linda is your wife.” Then he’d go, “Oh,” and wonder about Linda and if she was nice. One day his son was brought to him in hospital. He was only one year old. “I looked at him and I needed not be told that he was my son. He looked like me. I was drawn to him like I wasn’t drawn to anyone else who had come to see me.” He was given videos to watch.
I will spare you the mundane details of learning how to sleep, how to walk, how to eat. The days spent in hydrotherapy and physiotherapy and speech therapy, the hours spent learning how to use his muscles. “Coming out of a coma is like being reborn.”
Times got really tough after that, with no job and a very expensive condition to medicate. He sold their family car, moved from Lavington to the outskirts and basically started living on a shoestring budget. When I say things got pretty tough, I’m putting it very lightly. In 2017 his condition deteriorated sharply and it has been that way since.
In simple terms, he explains to me that when your kidney fails to do its job, which is to filter waste and excess fluids from your body, taka taka builds up in your body; fluids and electrolytes. You swell up and you’re in such unimaginable pain. “I can’t just eat anything because it can kill me.” he tells me. “For example I can’t eat a banana because it has potassium.” Neither can he eat an orange, apricots, spinach, mushrooms, potatoes, peas, cucumbers, peas. He can’t eat junk food. He can’t drink more than 300mls of water in a day. He can’t walk for five meters without feeling dizzy and weak. He is in constant pain. His joints are in such excruciating pain, because of the accumulation of amyloid deposits (any doctors in the house?) there which the kidneys can’t expel. It feels like acid. His spine is wearing off because of the same. He hasn’t peed in many years.
“Wait, you haven’t peed in many years?!”
“Yes, when I go for a long call, the body knows the sequence but since there is no pee it rewards me with such pain.” He says. He can’t travel. He can’t do the things he loves, biking, the outdoors, or playing taekwondo, which he did in his younger years. “I’m constantly tired or in pain or both. I hate to stay at home alone, so I go to the office where I consult once in a while just to avoid sitting alone with my thoughts, which can be dark, suicidal thoughts.”
He once tried to commit suicide; by overdosing. He was in too much pain, in deep darkness, no hope in sight. It seemed hopeless. At the final moment, when his body was shutting down and he was crumbling, he called his friend Peter to come save him.
“Why didn’t you want to die?” I ask.
“Because of my son,” he says. “The only reason I have been fighting to stay alive is for my son. Otherwise what’s here for me to fight for?” He says his mother died of the same kidney condition when she was 45. So did his big brother. It’s hereditary, he tells me. I’m afraid to ask if he fears for his son but I need not ask because he says, “my son has started itching on his back like I did when I was a small boy,” he says. Oh shit, I mutter in my mask. “Of course it can be cured if detected early. But I fear for him, I worry about him. He worries about me, he assures me that I will be okay and it pains me that he has to be the one to reassure me.”
A nurse walks in and they have a brief friendly conversation. She checks the imposing machine and I hear her say the word ‘heparin” a blood anticoagulant, which comes with its own grief because it reminds me of the days my mother would be so sick and we would source for the expensive drug downtown. When she’s gone, I ask him if he’s tired from talking because he looks bushed. He says it’s fine and lies there, being strong.
“Why did your wife leave?” I ask him, realising I’m asking the wrong person this question. But he had mentioned it in his email and it seemed pivotal to his story. He suddenly becomes even more vulnerable. It’s not a question you want to ask a fellow man because it unclothes him, it leaves him naked. He grins as if to say, oh, that little non-event? But his lips betray him, they tremble. And he looks away. It’s the usual story of marriage; he got sicker. He got moodier, angrier, and sadder. He lost his job, his status, his dignity. They started fighting. Hurtful words. They stopped talking. The only bridge that connected them was their son. Chronic illness like his changes your character, it’s not who you are. You are dealing with issues beyond just your sickness, your mind becomes sick with worry and sadness and pain and thoughts of death and what happens when you are gone. “We had a massive Zanzibar bed, and at night it felt like I was sleeping in Nairobi while she slept in Kisumu.” The chasm between them deepened and nothing could fill it. Their relationship had started rotting at the legs and one night it crumbled into dust. “The night she left, we had a fight about who was going to put the baby to bed,” he tells me. “She packed and left in her nightie, our son in hand.”
“Are you bitter when you think about it?”
“What can you do?” He says.
“Are you lonely?”
“Yes, I am. Of course I am. The one thing people with chronic illness need the most is social care.” You want to wake up in the middle of the night and the person sleeping next to you to wake up and ask “Are you okay?” You want to know someone is worried sick about you. That they’d drop everything to be with you. That they will be there when you are wheeled out of surgery. That they will ask doctors questions and have your best interest at heart. Josh has nobody. He lives alone. He eats alone. He sleeps alone.
“Would you consider dating?”
“Of course, but who would take me like this?” He poses. “It’s not easy to meet someone in this condition.”
He says he misses simple things. Like eating any fruit he wants. He soaks his potatoes for days before he cooks them. He misses the beach and sunset. And nyama choma, a good barbeque, standing around a spit with friends, laughing at a joke. He misses travelling, which he enjoyed. Airports. “There is something about airports, holding all these people speaking different languages headed off in many different directions, but they are here with their bags, the air is different.” He tells me how one day he got lost in the narrow alleys of Lamu at dusk and he wandered through the alleyways, in darkness for three hours afraid that dawn would still find him looking for his hotel. He misses being able to bend and pick things up, to stand for over five minutes without feeling his bones collapsing. He misses taking the staircase, folding a fist. He hasn’t urinated since 2012.
Dialysis is super expensive. “I owe this (Nairobi) hospital a lot of money, but they still allow me dialysis. That’s compassion and sometimes when you are very sick it comes from a completely unexpected quarter.” He takes almost thirty tablets a day; lining them up before him like soldiers in a passing parade. There is Esose, Diclofenac, Tramacet, Foseal, Meditrol, Ideos Calcium, Ciphrocet. He has taken potent pain killers that made him hallucinate and have dreams that he’s dying and he’s screaming and fighting death. He has taken weed and synthetic cocaine patches for his debilitating pain. He has gone to Mathare hospital to look for pain drugs. And these drugs change you, they have robbed him of himself, messed up his temperament, upended his personality. And he’s constantly sleepy. And tired.
He showed me a picture of himself when he was young, before this madness began. He’s sitting at a table, a plate of bread before him. He’s young and handsome, smiling the smile of the beautiful, a different smile from the one he wears now. He’s in a wife-beater. He has taut envious biceps. [“I’d bench press 70kgs”). He never drank alcohol or smoked cigarettes.
He tells me to take care of my body. That we take our body functions for granted. “Cherish important things, when you are sick in bed, having money helps but having family is even better. Human compassion is a healer. There are rich folk I have seen here who you can tell have no strong family ties. Perhaps they spent years working for money, not working on relationships. Money is vanity. Being sick and lonely is the worst thing.”
“What dreams do you have now?”
“To get a transplant and spend more time with my son, travel with him.”
I left. And I thought about my kidney the whole time. How I drench it in whisky and feed it all the garbage and how it unwaveringly toils for me. Later that day, as I stood peeing in the loo, I watched the stream of my urine and I really thought of my kidneys, the silent unsung hero in my body and I said, “Thank you, God, for good health.”
I have thought about him since I met him last week, and I hope one day his son reads all this and understands his father’s profound love for him and how he fought for him daily, through unbearable pain. And I hope he honours that love and sacrifice.