“Why regret?” By Lunga Njikazi. Edited by Rose Richards.

I have grown into a full grown man right now, and I am turning 26 years full of life in less than a month as result. I am supposed to have been living by myself right now or with my girlfriend. Probably raising our firstborn like my uncle and his fiancée are. We grew up as brothers as we shared clothing sleeping crammed in a hostel room. He had to wait until everyone was asleep before he could lay his sponge and get a rest. Good old days that were not so good, but I am sure God does no regret putting us through all that. After all, it has kept us humble and appreciating.

I should have stayed on Cape Town and take up that cosy position of chef de partie in that posh restaurant, but I got jumpy instead and did exactly what renal failure wanted me to do and that is leave my life for the unknown. I regret doing that, but at the same time I don’t sometimes; God put me to and I am quite sure he will see me through. As far as renal failure has brought me a life of limits, it has indeed given me a purpose. I have the power to influence positivity now and with power comes a responsibility that is saving lives.

I felt like a burden when my uncle would drive me to hospital. The poor guy would even go out of his way to send his friend to pick me up. So I decided to go by myself. It is not very easy as I sometimes stumble out of the hospital dizzy after a four hour long dialysis session that I could just collapse and for that reason I am often asked why I don’t ask someone to come with me, but I don’t and I never intend to. Do I regret those decisions? No. I don’t have the money for transporting that person after all and I can’t expect another person to put his life on hold just to hold my hand to hospital.

They say the phosphate that is building up in my system will semi-cripple me later in the near future. They say my bones will be fragile and I will need more than crutches to get to hospital, but I still will walk this path alone. And again I do not see myself regretting that decision.

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“The stress that is money. Being independent” By Lunga Njikazi. Edited By Rose Richards

I don’t like money, perhaps that is why I hardly have any and to tell the truth, I would not want for any if it was not a lifeline. Ever since the early days of my renal failure life it has become a need. A little later it became a source of amusement and now, it’s just a stressing subject. Three years after I was laying on my back in a hospital bed wishing I had money to buy my way into a dialysis facility as soon as possible here I am hoping I would find a source of income to take myself to that dialysis facility.

Three times a week, four hours a day on that machine. A very good clearance of those toxins my body can’t get rid of anymore and I appreciate the doctor who prescribed it for me because there are people out there who must pay two thousand rand for each session when I get it free of charge, with a sandwich, a piping hot cup of tea (black and with very little sugar just how I like it) and a cold apple crispy fresh out of the fridge. Quite nice, right? But the stress begins when I exit the hospital.

Can I imagine what life was like before money was invented? No. I mean, can you imagine signing up that Discovery Health should come to your homestead and take a sheep at every end of the month? I feel like that about medical aid, but sadly it’s a fight I will never take up. I wish to move to Cape Town when this medical aid starts to cover the renal failure I live with. So for this reason I must take whatever my medical aid providers throw at me. Back in the day when money was still to be invented the debit orders scooping out that little I have in my bank would feel like a whole cow has been pulled out my kraal while I was sleeping.

Luckily we are no longer in the stone age and medicine is more advanced, meaning more life for people like me living with such life threatening conditions, but the stress that comes with paying for it is unbearable. So I ask for money from people I call angels when I am stranded because the stress that is money runs the world and now I have come to realise that my world is run by stress.

Rose adds: Even 26 years after my transplant, I am unadventurous about employment and travel because of my condition. I can’t afford to be without medical aid or stranded in a place where I can’t get medical assistance that understands transplantation.

Motivated to motivate (by Lunga Njikazi)

I don’t see myself spending my own money to see a shrink. I don’t know, but I found nothing fascinating about them. Excited to have been booked one during my first year of renal failure, my spirits were sunk instead when she left after the session.

I thought she would make me feel as if I was able to run through a solid wall, tell me I’m a champion and encourage me to do better. Instead I felt like she was a prosecutor who got me to spill all beans and left me in an interrogation. I felt as if I had become less, like I was doing something terribly wrong because all she told me made me feel like everything is my fault. I really dislike people who speak like her as result now.

I know where I went wrong – I live with the consequences every day. Once I had a chance to slow down the damage that was happening to my kidneys, but I chose to listen to people who knew nothing about anything I was feeling like. The symptoms were there, but I chose to listen to others. I regret that choice every day, but I can’t reverse it now. I wish to be not hanged for my mistakes.

I wanna speak motivation the way I think it should be, leave those in earshot with hope and the will to do more to fight for what they think is good. That is the reason I wanna call my motivation course “Fight For”. It will be a group of influential young people with inspiring stories meant to make their peers realise that their stories are as good and that each and every one should fight for theirs.

I know I should be focusing on finding a good job now so that I can pay for my medical aid, buy myself nice things and rent a place to stay, but I think the youth of today needs motivation now and then and now I feel like doing that. Even if it is the last thing I do in my life.

I am motivated. That is why I want to motivate.

Lunga’s speech at Sultan Bahu’s fundraising dinner (17 November, 2017)

 This is the speech Lunga gave at the Sultan Bahu fundraising dinner on 17 November, 2017.

Good evening Ladies and Gentlemen and thank you for inviting me to this beautiful gathering.

I don’t know anyone in this room but I feel at home here. The energy is incredible.
My name is Lunga Njikazi, I am 25 years of age and I live with Chronic Kidney Failure.

I live in a small rural village in Botha’s Hill with my granny and my sister who has a two-year-old baby girl whom I dearly, dearly love and i pray to God every day that my condition is not hereditary and that God will spares her from ever having to experience this condition where a vital organ of your body shuts down completely and you become dependent on a machine for the rest of your life.

As a result of this illness, I make what I call a three times a week pilgrimage by taxi to the Albert Luthuli Hospital where I am attached to a machine for four hours and all my blood is drained out of my body, cleansed of all the toxins and waste material, and re-circulated back into my body and then I am ok the next day, and the following day I undergo the same ritual again, and so it will continue for the rest of my life.

Three times a week, 12 times a month, 144 times a year for the rest of my life.

A debilitating illness you will agree, but, let me tell you my dear friends, I am blessed, God has blessed me.

I am not bitter. I am not angry. I am surrendered to the Will of God and I love God.

Not a day goes by, not a moment goes by where I am not in the remembrance of God for this precious thing called life and this miracle called a kidney.

How often do you remember God with your perfectly functioning kidneys?
Remember Him now before God sends you His business card in the form of kidney failure.

I am going to pause now for you to take a moment.
Raise both your hands and bring them down to your back just a little above your waist.
Touch your Kidneys and say Thank you God.
As an audience it will be hard to believe or you will take it lightly, but I understand, the blessings God has showered me with are very difficult to believe and for you to comprehend. What you are touching is a Miracle.

Outwardly I appear broken; inwardly I am whole and in Love with God. A kind of Love you will not acquire even if you spent your whole life in a church or mosque. Life in the raw, in the poverty-ridden streets of Botha’s Hill, in the taxis and the over-crowded corridors of Albert Luthuli Hospital is my Church and my Mosque and my Temple.

This illness can make you go down on your knees with pain and despair and hopelessness,
But I tell you I am Blessed.

In this dark night of my soul, God sends two people into my life. One, a lady called Dr Rose Richards, an academic, and the other, a man called Ahmed Akoob from your organisation, Sultan Bahu Centre. Dr Rose Richards and Ahmed Akoob are friends and fellow activists who battle the Government on behalf of Kidney failure patients. One day, Dr Rose in Cape Town calls Mr Ahmed Akoob and tells him about me and together they are now working as though I were their son and they my parents and they work together to help me find solutions, not only for my dialysis, but also for my life. Mr Akoob deals with my illness and my career aspirations dream to move to Cape Town to be with my family and Dr Rose now helps me with my creative writing because she believes I have a talent for writing.
I am blessed. I have Dr Rose Richards and Ahmed Akoob of the Sultan Bahu Centre with me on my long road to freedom.

I have never met Mr Akoob in person, have no idea what he looks like, but he calls me regularly and when I see his name on my screen, something lights up in my soul. His call bring hope, it brings love and now I know that all of you are behind that call and I no longer feel like an invisible and anonymous person in the world. Dr Rose and Ahmed treat me with great tenderness and humanity. My humanity and my dignity has been restored. Just know your invitation to me today says I am alive and life is worth living and waking up every morning to celebrate another rising of the sun.

Through my kidney failure, I found God and through this pain this I got to meet Dr Rose Richards who in turn is a friend of Mr Ahmed Akoob of the Sultan Bahu Centre. Rose introduced me to Ahmed Akoob and there begins another chapter of my life. Meeting Mr Akoob is turning out to be a turning point in my life and a blessing I just don’t know how to describe.

Mr Ahmed Akoob of the Sultan Bahu Centre stretched his helping hand across the phone and offered me dialysis in Cape Town without expecting anything back in return so that I can be reunited with my family. Try to imagine this. This kind voice on the phone offering me dialysis worth R 200 000 for a year in private hospital. I asked him why and he said simply, “Every life is precious”.

The first plan Mr Akoob proposed was that he would get me a slot in one of the dialysis clinics he works with in Cape Town where I wanted to move to be among family.

Mr Akoob made enquiries in Cape Town government hospitals and then advised me to stay in Botha’s Hill as he said there would not be any continuity of care for me in government hospitals as I was a renal patient transferring from Durban and that it was too much of a health risk. I took his advice and continued at Albert Luthuli. And then Mr Akoob called me with a Plan B.

He arranged for me to go onto a medical aid plan with Discovery and he said his organisation, Sultan Bahu, would cover the premiums for 12 months and after the 12 months I can move to Cape Town where I would be able to access private medical care and dialysis after my medical aid activates.

My first month’s premium for November has already been paid and now 11 months to go and Mr Akoob and Dr Rose are networking to get me a job as a chef in Cape Town so both my dreams of reuniting with my family and working at my dream job becomes a reality. I really am blessed.

Thanks to Sultan Bahu Centre I now have a medical aid membership with Discovery and the future looks brighter because it means I can go to wherever my profession calls and I won’t have to worry about paying for it. I really am blessed, don’t you think?

Even standing before you today I take as a blessing because after I was orphaned at the age of 13 I fell sick with such a disease and saw many of my friends die with the same condition, but here I am and I still have life in me to live my dreams that is heading a successful restaurant kitchen and becoming a dj.

I might not be as good as Gordon Ramsay, but Mr Akoob and the Sultan Bahu Centre have given me a chance to study and practice my craft and who knows, I might leave the face of earth with a Michelin Star Award for Culinary Excellence someday too.

I know I will also die one day—we all will—but I would like to have changed the state of organ donation first. I wish to change the perception among my people who think organ donation will end their lives, or like how Africans think they won’t be accepted by their ancestors when they pass on.

People as young as kids aged two I have seen dying from kidney failure and that is why I will keep repeating to say I am blessed to have people like Mr Ahmed Akoob and Sultan Bahu Centre and Dr Rose Richards in my life. With them still on this face of earth you can bet on it, the future of our nation is even brighter. I am not the only one blessed. We all are.

Before I conclude I would like to thank the management and founders of Sultan Bahu Centre for your generosity and also thank Mr Naushad Motala for his kindness in getting me here. It seems kindness is the trademark of Sultan Bahu Centre.

May God bless you all. May God protect you from harm and keep you in good health and every
time you think of or feel your kidneys, think of God and you will draw closer to Him.

I thank you. I will go home rejuvenated in body, mind and spirit and as a potential Master Chef, I can’t wait to sample the Indian Cuisine tonight and learn about who this man, Sultan Bahu, is. He must be special.

Viva Sultan Bahu Viva.

I thank you. God bless you all.

I wish to do it again. By Lunga Njikazi

On Friday, 17 November, Lunga had the opportunity to speak at Sultan Bahu’s fund-raising dinner. Below he describes that experience. We’ll upload his speech soon.

 

I remember standing before a small microphone that despite its size could pick up every word I uttered. Legs trembling and cold sweat slowly running down my back I kept looking around at the audience as they were just there frozen to give me that attention that I had to always beg for elsewhere.  So I tried to slow down my speech so that I could emphasise on the words I thought deserved emphasis. In that process I skipped a few words because I lost track of where I had been reading making eye contact with the people were there listening to what I was saying.

For the first time I spoke before 300 plus people and to tell the truth, it was scary, but I can’t wait for the day I get a chance to do it again. I will try to wear appropriate clothing, know the type of my audience and the people I will be amongst. I also wish I could speak after someone with great experience like the guy who spoke after I did. A good speaker he was.

It was a huge hall filled with people who were willing to donate funds to our foundation, the Sultan Bahu Centre that helps needy people with expensive illnesses like mine, that is renal failure. So I stood by the entrance waiting for the guy who would usher me to where I would be seated as Indian people from different walks of life walked into the hall to make it a glorious occasion. The world would be a better place if everyone knew what support was the way my last Friday’s audience did.

The ceremony started with two guys who were MCs breaking the ice by making jokes and before I knew it my name was called and I had to do what my father figure (Mr Akoob) had invited me to do. I remember he called on a Monday to ask if I would be a guest speaker at his organisation’s ceremony in Durban. For a second I was excited thinking he had said Joburg, but I guess it was just the travelling enthusiast in me that was listening.

So I did my speech without sparing any flaws. I personally think I was just average, but the few that I looked at me had eyes glowing and they told me it was a good speech and I should keep it up. I’m sure they meant I should practise even more. After a few steps past them I found the seat I had been sitting on before I walked up to the stage and the organisation’s chairman was there to give me a handshake and again, like I started on my speech, I  was reminded that I am blessed. Blessed to be amongst such good people rich with soul. The day before the event I was looking forward to the food; two days after the event I am looking forward to making a strong speech next time I get a chance and I hope it will be soon.

The donor, the transplant and the recipient…and the miracle

I never knew the most important man in my life—the one I have gone through life with and who has ensured my survival. I don’t even know what he looked like. He is flesh of my flesh and blood of my blood. He is my kidney donor.

My kidney came to me through a strange series of events on 3 October, 1991. I was on campus, in the library, just finished with watching a film for a film as narrative module I was taking. I had no classes that day and had decided to come to campus because I was a bit behind with my assignments. I’d had bronchitis in Winter and hadn’t really got back my strength although I’d recovered over three months ago. I see now that this had slowed me down, but at the time I chastised myself for my slowness and called it laziness.

The new book display was just outside the performing arts rooms in the library. I had stopped at the new books to see what looked good and was poring over some social science books when a familiar voice greeted me. It was the social worker from the general hospital and she was accompanied by one of the senior nursing sisters. I thought they were there for the books too and probably taking a course, but they told me that they had come to find me because a kidney had come up for me.

I thought I had heard wrong, but they insisted I come with them to the hospital and so we set off to the Gen. At the main entrance I jumped out of the car with the social worker while the nurse went to park and we ran up Hospital Street (the main corridor of the hospital on ground floor), I with my heavy book bad bumping against my back and the social worker in her high heels, to the far end of the hospital to catch the lift up to the transplant unit.

The social worker and the nursing sister were worried that we had taken too much time already, because, you see, back in the early nineties we didn’t have mobile phones and the chances of finding me on a large university campus when I had no classes, was very small. The transplant unit had tried to call me at home, but of course I was not there. When the social worker and nursing sister had announced that they would go and find me at university, the doctors had told them they would never find me on time because campus was too big and that they should give the kidney to the next person on the list. But those two women had insisted I be given a chance. And they had been given only a small window of time in which to find me. And, somehow, against the odds, they did. Their persistence and conviction gave me back my life.

All I know of my donor is that he was 24 years old when he died by his own hand. Only two years older than I was when I received his kidney. I like to think that as much as he gave me a second chance, I have given him one. I imagine that he is my secret sharer. I hope that the life I am living would have been interesting to him. I wonder what he would have made of it.

Sometimes I imagine how it would feel meeting his parents. I imagine that there would be a sense of recognition between us. Sometimes I try to find them, but I have never succeeded. Perhaps I never will. But I would love to tell them what their son meant to me and that when he did what he did he had not meant to hurt them. Mostly I would tell them that he helped me to live and to live well and that I think of him every day. I would tell them that their son is a hero.

 

Passing (by Rose)

I find myself writing quite a bit these days about passing as normal. Reading Lunga’s post about living because he’s alive reminded me of what a struggle staying alive was when in kidney failure and what it cost me to do it.

At first it was difficult for people to see that I was ill and I experienced exactly what Lunga describes where people don’t realise how ill you are and how much it costs you to do ordinary things like walk to the bus stop or carry a book bag. That always made me feel proud because it showed me that I could fit in and that I wasn’t weak. I wanted to fit in and be part of life because then I felt less freaky and more powerful.

Once I became more ill people started to notice that something was wrong. I was very pale but I could cover that with make up. I started losing weight, but when people started remarking on my bony arms, I wore baggy, long-sleeved clothes. When I finally got onto peritoneal dialysis I managed to keep my dialysis bag and abdominal catheter out of sight.

Passing helped me forget about my condition a bit and made me feel strong. Every time I managed to pass it was a victory. I learned to do it so well that people never realised how ill I was unless I told them – and even then they did not really understand. As Lunga says, people don’t understand kidney disease or what it does to you.

Most of all what struck me about his piece on being alive is what he said about needing to be reminded that he is not dead. Everything slows down with kidney disease. Your hair and nails grow slowly because of protein loss – in the year before dialysis, for example, my hair grew a centimetre. Your senses change – my hearing and eyesight deteriorated, my senses of taste and smell became blunted, nothing really had a flavour anymore. My energy levels were so low that I was sleeping 14 hours a day and I had to think very carefully about whether to bath or shower because doing either would deplete my energy entirely. I spent a lot of that last year lying on my bed.

I used to lie there and look at my pale, skeletal hands with their sunken dark green veins and think how they looked like a corpse’s hands. Sometimes I would waken from sleep, lying on my back with my hands folded on my chest like a cadaver…and I would have to pinch myself or bite my lip to feel something that let me know that I was still alive.

Everything was a battle, but all that fighting made me feel invincible and the toxins made me permanently angry. People say one should let go of anger, but I say if it energises you and serves your needs, hang onto it for all you’re worth.