“Mother” by Lunga Njikazi. Edited by Rose Richards

Lunga and I have often talked about writing about our mothers, but we each have put off doing that. Somehow we seem to find a reason not to write the pieces we discussed or we end up writing other pieces. I think part of the reason is that we both lost our mothers young. I was 28; Lunga was much, much younger. I have yet to write my piece, but here is Lunga’s.   – Rose

Twice each and every month the mother who gave birth to me came to the Eastern Cape bearing gifts for everyone and more for me. Sweets, chips and every other thing that was hard to come by as my mother (the mother who gave birth to the mother that gave birth to me) had to make ends meet with every penny while medical aid ripped her salary apart. We slept with our stomachs filled, no matter what it was we had for supper and it tasted good because it was prepared with love or at least sometimes we would assume she cooked it since she bought the groceries.

I never understood why the mother who gave birth to me stayed only a day and left for Durban again. Turns out she too was trying to make ends meet for herself while saving for the designer clothing she would buy for me. Then I didn’t know or care about brands and now I know they were expensive clothing. Big brand names, now that I think about it. She always would buy me presents when I went to see her in Durban, but now the best present I would love is a kidney. Don’t matter the whether it comes in a cheap packaging or not.

Many times I battle with the thought of how better life would be if my mother was still alive until thinking about my maturity. I ask myself whether it’s good for grown ups to really need a mother’s love. My mother died very early and I really don’t remember how it felt like. Perhaps she would have stayed by my side when everyone within my family looked at me like I did something bad when I went to the internet to ask people for a kidney. Sometimes I find myself crying thinking about how I must ask for help from people I am not related to. How my own people start an argument when one must help me with something. People I didn’t even know before I got diagnosed with renal failure have become my family.

I think about how life would be if I had a mother who would come to see me in hospital when no one even thinks about calling me when I get admitted. Sometimes I tell myself I will go somewhere far where they won’t even be able to trace me. I shall get there and find me a thoughtful woman who has wife characteristics and marry. We will then adopt a baby and a pet and live happily without even touching the word family. Not that I hate my family, but because without my mother whom I remember was the one to show me affection family isn’t there. Perhaps that’s why I didn’t feel any. I would then tell my wife to bury me without my family’s presence when my heart gives in and kidney disease tear us apart.

A mother I celebrate with through the kind of love I get from my guardian angels, I like to call them. And I know mother’s day means a lot. I celebrate it wishing I had a chance to experience a mother’s love.

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Memories (Part 1). By Lunga Njikazi. Edited by Rose Richards

Sad is the day when the dialysis matron tells you that you are going to have a meeting with the renal department doctor of the day because you already know that they are going to give you a long set of words you don’t have interest in and you know the conclusion will be your dismissal from the services of the hospital. You’ve been getting services free of charges that would have cost you and arm and a leg if you were to pay for them.

Haemodialysis is a very expensive treatment and the money involved is the amount that not even in my dreams a person like me will see in this lifetime. So I was lucky to have not been called to that doctor’s office because I am sure that if I had been called for that meeting, it would be a few days before my last day on earth.

So my doctor paced into the room with her tonic red hair that is just cut by the earlobe bouncing to make her look like she was on a horse that was running ahead of others headed for the finish line. The finish line turned out to be me to my surprise, but I was not so shaken by the sight even though the lady was not in her best mood. She never has been after all. She put on a serious face. The same serious face I saw in the morning of the first day I woke up in Albert Luthuli hospital. I was thirty five kilograms above healthy weight and couldn’t walk then and she had to make a plan to get me to the right weight.

I now understand why she was so serious on that first day, but I didn’t understand what could be serious after three years and counting of healthy living other than being dismissed like many of my dialysis brothers who passed away days after being told they couldn’t be accommodated anymore.

I remember everything seemed to happen in slow motion as she started punching keys on the portable computer that kept patients’ information. After every sentence of typing she looked up then down at myself animated on my bed. After about four minutes of no verbal communication she uttered a few words to ask when I planned to get medical aid.

I was quiet for a second to digest the question because I had to think carefully of what I was going to say. “I don’t think I can afford to, doctor,” I said.

Another two seconds stare at me again which I thought was the last nail to my coffin, but it turned out I was wrong. How could I doubt Dr Azor after such enlightening conversations as we have had in her office? She was my favourite doctor from the word go and after she told me that they were going to accept me in the provincial dialysis programme, I favoured her even more.

Being accepted meant they had to move me to another sub-hospital now and the truth is that it has not been sweet there, but I don’t think I would like to go back to Albert Luthuli Hospital either as seeing the insides of the building brings back sad memories.

(TBC)

“My grandmother. Dearly beloved” By Lunga Njikazi. Edited By Rose Richards

My grandmother was a heroine and that is all I will remember her as. If she had any flaws, I never saw them and if she did something bad, I did not hear of it. I know that there is a good reason I never did and for that reason I do not want to hear about it. Ever. That is how I was raised in my grandmother’s house. Bygones were put where they belong, in a heap of bygones where they shall never be taken to the next generation or dare try my grandmother by trying to exhume them.

I know this would be challenging my grandmother in person and if she were to read this, I would not get lunch-money for a month given I was still in primary school when I lived with her. I am sure things would be worse if she woke up, like I wish she would, and found this on my journal.

See, there’s a past that just can’t be brought up and then there’s a past that should be in-order to move on. Today I realise my gran didn’t care. A past should be left to pass with its stories never to be told, especially if they were not sweet. Like almost sleeping with empty stomachs. That past is painful and that’s why my granny would not approve of me talking about it, but something I believe in is that one should know history in order to change the future. Kids out there do not care about preserving anything of value because they do not have the first-hand experience of not having it. Sorry, grandmother, for defying you.

I know days of poverty with my grandmother, but the kind of woman she was made us feel that we were not less than other children who wore designer clothing and when they were talking about having corn flakes with warm milk and honey, all we could relate to is how our grandmother bought a kilogram of sugar with her last coins and borrowed three cups of maize meal so that she could make a runny mielie porridge that would be enough for a family of six. A father about to go to work, a mother also preparing for work and my aunt who would clean after the three of us (Xolani, Sandy and I) had left for school.

Even though we were not well-nourished, we still came back with school marks that put a smile on grandmother’s face though. Holding the report far from her face as if she was observing an X-ray picture with glasses just a little lower than they should be. So I thought.

I remember coming home to my grandmother with a test below 50% that was the pass mark and she asked what was so difficult with it. She always had the answers, because besides how she helped me with the corrections to the test, there are many other things she gave me guidance on.

Often after a while I think about her when I feel beaten by this medical condition that I live with. My grandmother would have answers better the people who are surrounding me. I guess wisdom is better than a PhD after all because my girlfriend is onto her third graduation in five years now in university, but still doesn’t come any closer to having my grandmother’s kind of answers.

They say don’t praise a living person and so I guess I can praise my grandmother because in heaven I am sure she is very close to the maker. Overall I can say my grandmother was everything. A loving mother, a friend and a good source of wellness. I think about her every day, especially now that I live with this condition. She would make living with it an ease and not for a second do I doubt that. Special moments we shared and good conversations we had feel like they had been left hanging or were just too short.

Sorry for delaying your flowers and that you receive them only now that you have passed. I love you and I will always do.

Depression By Lunga Njikazi. Edited by Rose Richards.

Yet again I find myself in a dark hole of misery, of gloom, a feeling of uncertainty, where the heart is torn and can hopefully get mended by some sort of attention from people who are not even aware. These people I could talk to, but no, I won’t make good conversation. Why bother? I could play video games or watch a movie, but neither sounds like a good idea. Why bother? If this bothers you, imagine how it hurts when you are actually experiencing it first hand.

Inside I was crying when I wrote this, and outside all my grandmother could see was an angry young man. I felt like my head was about to explode and to fume-out I shouted at my niece for accidentally spilling a bottle of water. My granny left the lounge where we were silently sitting for her bedroom and called the little girl to come along. I hope she grows up one day to read this piece and learn how sorry I am for every time I mistreated her. I tried to calm myself, Lisenathi.

See, I was the only child my mother gave birth to; my granny also had the only grandchild in me. So for that reason I was treated like a golden egg. You were only born four years after I came back to live with my father’s family that your mother, who happens to be my half-sister had lived with since birth.

I was angry that both my mother and grandmother had been taken too early and what made my anger even worse was that I got diagnosed with kidney disease when I was preparing to move back to Cape Town.

Trust me, I have wanted to run away many times, but my health condition didn’t allow me to. So because I had not the energy to hit you when I felt like, my last resort was yelping. Yelping as the dog I felt my family was treating me like.

I know that does not justify how I treated you, but I tried to explain, dear niece. I love you, but I feel beaten up. The odds of me having my own child are getting even slimmer as my condition is worsening and you might end up my late father’s eldest grandchild if I, the heir, depart from this lifetime without having a child to carry forth his name. You are the golden egg. For a while I forgot about depression thinking about you, but eventually fell back into those thorny thoughts.

One thing I have learned over the past few years dragging my body everywhere is that it is better having something to occupy your thoughts and that’s the reason I wrote this piece. To write something and because it somehow feels like I am speaking to someone and that someone is this paper I am pouring my heart onto. I feel like crying, but how is that going to help? I ask myself. I know I can do better than just sitting here thinking about how depressed I am, but again, a negative part of my thoughts proves mightier than the positive.

How beautiful it is writing when you are trying to write something positive in times of feeling down. I hope I will write a book about how to help depressed people one day because today is not that day. Today I am depressed and I don’t want to repeat how depressed I am.

“Believing” By Lunga Njikazi. Edited By Rose Richards

Is it foolish to believe? Not only to believe, but believe in something that you know won’t happen without a willing donor and hours of tests and surgeries? I find myself with my face in the pillow many times because believing has been letting me down once again.

Recently I have been strongly believing that my kidneys would by a miracle start filtering fluids that are in my body again and that believing has even reflected in dreams. I sometimes dream I am taking a long piss. The sound of it hitting the floor, the feeling of relief because the weight is being taken off and just the thrill of it after years of dialysis. One would undermine how precious it is to stand before a urinal and take a leak.

Being in renal failure has led me to believing in kidneys more than everything. The magic that is a fist-small organ that many can’t even locate in their own bodies. I sometimes wish I could write a whole novel just to explain how vital they are, but I really am short of words. Who else but a renal failure patient who almost died in hospital would better put it in words? You can’t help thinking organ donors are sent from heaven when you know a kidney transplant would transform your life.

I should be in Cape Town working as a chef at a restaurant I could only dream of as an adolescent, but here I am treating a chronic disease that can’t even be controlled by specialist doctors. I was about to take up a chef de partie position at a wine estate restaurant when I got sick. I had not even finished half a year when I started getting the symptoms and had to drop everything and go back to Durban. Only for my health to even get worse because I couldn’t find or afford a proper doctor who’d diagnose me. So I was referred to a traditional doctor and, because I believe a lot, I took the ugly herbs. These herbs’ purpose was not even explained properly nor was the safe and effective dosage.

Believing.

Now I believe that Discovery Health is going to part the dialysis waters for me and I may walk right to the other side one day. I believe God is going to intervene and with that intervention come fulfilment and I shall get back on the horse and ride to the sunset as I intend, but what I should also do is believe in patience.

Believe.

“Medication. A wish granted” By Lunga Njikazi. Edited By Rose Richards. And added to by Rose too.

My grandmother. I miss my grandmother like she passed away yesterday. I miss everything about her, from days of happiness which she was the source of, to days of sickness when she would take me to the best doctor in town with her medical aid. As result, I am sure I have been on more than three medical aid providers because she insisted on finding one properly tailored for her. So I would come back from town that day with medication and snacks. Would go to sleep sick that evening then wake up ready to run through a wall the next morning.

For a while I kept wondering how on earth that was happening until I realised it was the medication. How did I miss it in the first place? My grandmother would be sick too and she took meds. Medication must have superpowers, I thought, because one person I know who takes them is my granny and she is everyone’s pillar of strength. I should live on this too. Keep taking medication. I swear I was ready to unintentionally commit suicide by an overdose and leaving no note. How I idolised medication. I ended up thinking it was a fabulous life living on meds and so I took that medication life upon me.

Ask me about being careful of what you wish for. Such things led me to realising that some way somehow I must have a higher calling because all of my wishes are granted, like this medication life I am living now. Living with a condition that has you going on and off certain meds. At first I was on two hypertension pills then they grew to four and next thing I knew I was on six. How did we get so far, Dr Azor would ask with a facial expression that showed she was fuming with anger. Can’t say I blame her. I can be quite a handful sometimes, but just sink into the chair like I did. Wouldn’t stomp out the small office because I needed that prescription she was compiling and simply because I was taught better. So I waited in silence and eventually broke into another conversation again. Typical me who can’t keep his mouth shut.

I liked Dr Azor. I guess that’s one of the few things being on medication I love, sitting and chatting to her while taking in those gestures that said she was listening, but believes only a few things I say. Like the fact that being on medication came as a wish to me. One would wonder how I wished for such a sad lifestyle where you must drop everything when the alarm clock rings and the phone screen says it’s time for meds when you check it.

I will write even more of this entry after taking my day’s medication and giving in to the drowsiness the handful of different shaped pills will give me.

Rose adds:

I’ve taken medication for kidney disease since I was seven. That’s 41 years now. I’ve been responsible my own meds since I was nine. For me it’s like eating breakfast or brushing my teeth – simply part of my daily routine. Except the consequences of missing meds are far worse that skipping teeth brushing.

I think that in the 26 years I’ve had my transplant I have only missed two doses, once due to being very ill and the other due to a weird schedule change. I haven’t even missed doses when flying through different time zones, although it was more difficult working out when to take the meds. I don’t take mine on a clock schedule, but as part of my natural rhythm. So I wake in the morning, get breakfast ready and sort out my meds, which I take on a full stomach. In the evening I take my meds after supper, usually immediately before bedtime. So it doesn’t matter when I have breakfast or supper or whether mu=y schedule changes – the meds will be taken after that.

In my case being made responsible for my meds from an early age made me more systematic about taking them. When I was nine, we had a family crisis that led to my being looked after by my grandparents for several months while my mother was ill in hospital. My mother wasn’t able to monitor my meds and my grandmother was half blind from glaucoma and worried about my mother, so I made sure I took additional worry off her and managed my medical condition. All these years later doing that is second nature.

 

Independent. By Lunga Njikazi. Edited by Rose Richards.

I am actually glad I got my uncle to stop taking me to hospital because even though the first four months were difficult, I would be probably long gone or would be fighting for my life motionless in a high-care. The only thing that was great about it was being transported back and forth and that is all. Everything else was harmful to both my health and happiness. From being controlled on what to do to what eat, I could not even eat a little of something because it was harmful like I don’t know how much of it I am allowed. It was also fine until he started complaining about petrol money and everything he could think of. That’s how awful it is growing up without a parent. You become everyone’s burden. I am glad I got him to stop because even though he would nag me to stop taking too much fluid, I still got him to buy me a 440 ml ginger ale on the way back from the hospital. Bear in mind that I was supposed to take 500 ml in total per day. The day would be so hot and my throat would be longing for something ice cold and once the drink hit the back of my tongue, I could not stop drinking until the contents were done, but the scorching sun still made me so thirsty that I would be looking for something else to drink like I had just walked through a desert when I got home. I literally drank more and more because I didn’t know the struggles of having to take myself to hospital. I would gasp until I thought my breath was going to cut, but I was spoilt by the fact that I was being rather chauffeured to hospital.

My legs were so swollen that people selling traditional herbs would even literally stop and beg me to try their herbs and some even went on to say I had been bewitched and that I should go and see them where they practised their craft. I remember this other lady even gave me her WhatsApp number claiming that she was a traditional healer and that she wanted to help. I had to make it clear that I was open to trying her ways because I was sick after all and needed help of some sort, but I would not take or ingest any herb. That was the last text I sent to her. She never replied.

Gone was the hope of being healed without herbs or western medicine. What I know is that the lady was not gonna help me free of charge or even though she would not charge me if I was lucky, she still was going to expect me to tell the world that she like my Moses who single-handedly parted the Red Sea for me. That is what con artists want, to be praised like they are the answer to everything. Who would not want to be after all? I am sure even the dialysis machines love the idea of us depending on them, but I have a problem with people who mislead others who are desperate, all in the name of making profit. I mean, I could not take 20 steps without stopping to catch breath, but I knew my problem lay in my fluid intake and I was still open to trying something else if it was sold to me in a very good way. I can’t say I am not glad that I didn’t encounter such a con artist.