LIVING WITH LUPUS

ITUMELENG I-TWO SIBILANGA

Talking to the Director of the THE LUPUS DRIVE,  Itumeleng Sibilanga, a.k.a I-two, about growing up, life and living with Lupus.

 Where were you born and how was life growing up? 

Born and raised in Motswedi. My Grandmother, Neo Moletsane,  raised all her children's children under one roof. Where money was not a big deal at the time but live stock and harvesting from the land was true wealth. On week days, we herderd live stock from the nearby mountain  to the kraal which was across from our home. The boys would take care of this and the ladies would be busy helping in the house. We played a little but when we did, we played hard. Saturdays we did chores or we would go to the Bush kraal where over 80 cows were kept because the village chief did not allow cattle to be kept near residential areas for hygiene purposes. We would walk for hours bringing milk home. These were great times as everything was organic.

What made you study Graphic Design?

Initially I never knew what I wanted to study but because my older brother was very observent when I was growing, he suggested it. He remembered when I was in Primary School, I would watch Disney movies and when I got home I would remember the pictures and I would redraw the scenes in my hardcover book.

The Jungle Book and the Lion King were my favourite. I still have the movies and songs today.

When my brother suggested I do Graphic Design, I didn't know much about computers besides typing and scribbling on window paint. Never knew I could draw, let alone design on a PC. When I was told I would be drawing on PC, I got scared and excited, all at the same time. I had no programs and no computer so my brother bought me my first computer so I could practice and do my assignments from home. He even took me in to stay with him until I completed my studies. I had a great time in Pretoria. I passed in record time and got my diploma. 😁

When were you diagnosed with your ailment?

I was diagnosed with Lupus in January 2016 when the doctors saw what we now know as the Butterfly rash across my face. I had been sick since 2014 where my first sign was painful and swollen joints in my right hand with fingertips turning purple. After that I had eye problems where I could only see with one eye and when I visited the doctor he said I had an infection. Even though the drops helped but something new would come up until I got admitted at JST in Rustenburg where the X-ray showed my heart was twice as big and I was given 19 tablets a day for 254 days, but no change until January 2015,  where obvious signs were showing on my face. This was the beginning of a new chapter of chronic pain and many complications with new chronic illness activated by Lupus as my organs where being attacked at a slow rate. However, I am learning to manage the desease with chronic meds and healthier lifestyle.

What is LUPUS?

It is an autoimmune diseases where the immune system attacks healthy tissue. So the immune system becomes hyper active, because of so much activity it gets confused and sees good and bad cells as all bad and attacks. There is no known cause but it is hereditary. In my case I suspect it comes from my father's side of the family as my father passed 2009 of complications to his health. This is something I have to further investigate.

What is your Non-Profit Organisation (NPO) called?

The Lupus Drive

Why did you decide on starting this foundation?

When I was diagnosed there was no one I could get help from because I was made to believe that it is so rare chances are I am the only one with the disease in the country. So much about the number of patients is not known, but it continues to take lives. This is part of the mission of The Lupus Drive. I contacted the known  foundations in SA but no feedback or help from them. In 2016 I started posting about my struggles with Lupus because I wanted to leave a memoir incase I die of  unknown causes. So Pontso Moiloa who is a friend from High School contacted me and started asking questions about my struggle and that is when she saw the need to raise awareness about Lupus. We had our launch on 25 November 2016 where we relied on personal and public funding. It was not an easy journey but we had a goal in mind and today we can see the results thereof.

How many people are involved towards creating awareness and in proving support to your foundation?

We are a team of 3 where Pontso is the founder, I am the director and Nompumelelo Simango (Operations). We bring our individual skills to the team, this has proven very effective as we have managed to stay relevant for so many months with over 100 people living with Lupus as members of the drive and many coming up. Some have had Lupus for 20+ years and have met one or two but because of our whatsapp support group they can interact with fellow warriors from all over SA. In our Whatsapp group we have warriors giving each other  comfort as well advise on how to go about managing the disease and type of medication to take if new problem arises. This kind of support has proven useful as members are now quick to respond to new illments and get help sooner. See our page for more detailed activity.

What impact does living with Lupus have on you personally, and your family?

Even though the early stages were tough but it has brought us closer than before. Everyone has been 100%  supportive including my uncle back in Motswedi village. I now understand and know love through my friends and family. Even now that I am managing this disease everyone still checks and visits me.

I have learnt to look forward to just having a good day and any bad news from the doctors has taught me to work harder in life. The Love of my life Tshepiso Rantho has been with me since my first day of illness, where she also helped take care of me by feeding me and bathing me when I couldn't. My daughter Aganang was not even a year old but she would climb up the bed and kiss my sore joints and say 'Solly papa' (baby talk). This gave me strength to get better and my family made sure I had whatever I needed to get well. I was never alone my friends were there too. I am so lucky and grateful to have such unconditional love.

How can people help fund your NPO?

People can make a generous donation of any amount to our account number. We can do with every bit sent through as we are limited as we depend on personal funds to do activations and awareness all over the country. We use these funds for merchandise and get to and from interviews and activations nationally. We also have shirts available at R150 each.

We are currently raising funds for the Evening Of Hope in  28 September 2018 where these funds can help us accomplish this goal to cater to Lupies for the night. We are in talks with Government to proclaim May National Lupus Month and 10th May world Lupus Day, where we will see All South Africans wear purple or wear a purple ribbon to stand in solidarity with all warriors and their families across the country and worldwide.

The Lupus Drive
Fnb
62730233814

Social media handles.
FB The Lupus Drive
IG: the Lupus Drive
Twitter : drivelupus

Contact Itumeleng +2784 418 3443 and Pontso +27608295154

Sponsorship request/proposal is available for anyone who wishes to see a more detailed view of our objectives with The Lupus Drive.

In addition, the South African Government has known about Lupus since 1981. Some of the medication is harmful like Prednisone which eats away at your bones. Thus the government needs alternative and effective medication. This is what The Lupus Drive wishes to achieve also.

WORD TO THE LUPUS REVOLUTION

THE LUPUS DRIVE

"Find me a purple heart hero
One who's strength in a gentle roar
A friend that shows up in my weakest
Keeps me, always in good mood
Find me a purple heart Superman
One whose blood shows he's human
A crowned King in my high place
Find me, that man with a butterfly face
One whose love, defines fatherhood
Through the pain he is still in a good mood
And I will show you that man.
You are a Lupus DAD
A hero carrying the purple flag"

- Sakazi L. Thwala

A VICTIM OF EXTREME MISANDRY

I am facing  a disturbing predicament in my own family – and this is,’ hatred for men’. Not just any hatred for any men, but men that are an umbilical habitual connection and bloodline in our family.

This started years ago, when my mother was physical abused by my father, which is one of the issues I dealt with in my previous writings. This hatred has since spilt over to all men in our maternal-and-paternal families, respectively. Even the little boys feel it.

The premise of this hatred has since been ignored, without affirmation, introspection, retrospection, counseling-sessions, emotional compensation and ownership from the initial abuser . A more formative defence mechanism has since been erected, which places all men in a discriminatory boxed environment – ‘All men are abusers and all men must suffer.’ 

The seed was planted by a male figure in my life, and now,  misandry has manifested its self – ‘the sins of the father will visit upon the son’ , so the saying goes. 

It came gradually, over the years. I did not pay too much attention to it, because I saw my mother as source of nurture, emotional protection and a room of wisdom. Only to discover later on in life that I am blamed for what my father did years ago, turning her into a punching bag,  which resulted in their unconditional divorce.

Unconditional  because,  growing up as a youngster there was no financial, emotional,  physical implications and reproach given towards my parents’ divorce conditions. Hence, this  clouded blame shifting that has shrouded my family’s existence – now, spilling over to younger women and men that had nothing to do with it in the first place.

I always wondered why my mother blamed me for every little thing that went wrong in our home, why she chastised me for things I did not do, and why she believed people that accused me of things I did not have any faintest idea about. I first saw it as personality enhancement, don’t talk to your mother about anything,  however, continuous replications made me change my outlook. And now, I see it as it is – plain, emotional abuse. 

Coupled to that, I am constantly reminded  that I am ‘useless, baggage and a good for nothing soon to be a street sweeper’ which is, verbal abuse.

On top of that, I am also told that I’m not allowed to talk to anyone, tell anyone of the things that are untowardly uttered towards me, as man. Why? Because, I am a man and must take it as a man, just keep quiet. Why? Because, it’s what men do. Take it and analyse yourself man! 

It all comes to the point where one cannot ignore the hash, degrading words that verbally rain towards you, and ones verbal reaction is taken as ‘women abuse’ – cycling reaction of abuse. Who is the real abuser here!

It’s allowed for a man to be called “Shit!”  by his sister, and the man must just take it, like that, as a man. Why? Because, if a man retaliates, that is not manly of him.

I don’t blame my mother for what she’s doing,  for the reason that, she did not deal with her pain. A pain that came as a by-product of physical abuse, in the hands of man she loved. 

As people we reflect upon our own lives and how we are brought up.

It takes great courage, and emotional strength not to replicate the sins of our fathers. Even in the face of women that are reverse-abusers*

Yes, say 'No to Women and Children Abuse.' Reversely, say 'No to Men Abuse.'

I love women*

THIS IS NOT A REVOLUTION

Linda Sakazi Thwala

SPIRIT AND SEX

In the past months, 2017 leading to 2018 , I've heard a lot of discussions and debates about spirituality and sex. A number of these discussions seemed to involve the contrast between, being a Healer and the LBGTI  (Lesbian Bisexual Gay Transgender Intersex) community's position in Spirituality and Spiritual matters.

A question was posed in one of these discussions, as to whether a Spiritual person, whether male or female is likely to be Gay or has dabbled in sexual activity with the opposite sex because of their Spiritual inclination. Surprisingly, many people seem to have a general consensus that we "Healers" or "Spiritual" people, in fact do dabble in sexual activity with the opposite sex, and we are in fact bisexual in spirit and in nature.

Let me explain: When one talks about the "Spirit", one is in fact talking about the "Eternal Self" - now in the "Eternal Self",  sex or the nature of one sexuality (heterosexual, homosexual, transgender, male or female)  has no point reference. Why?

Well, in the "Eternal Self" when there is no vessel, you body, to carry your "Spirit" or "Soul" if you like, the choice of your sex and sexuality has no barring, and point of reference, when you are in the "Light Eternal" (or darkness...another debate in another day) 

In the Light Eternal when we as humans have lost our bodily inhibitions and isotopes, and we become whole - borrowing from the Chinese spiritual philosophical compendium; the Yin closes the Yang, and the Yang closes the Yin; the feminine completes  the masculine, vis-à-vis, the two sides become one, whole. We are no in the body, we lose our prejudices of what we are in our bodily presence, we lose our sex and our sexual identity. When we are "Spirit". Sex and sexuality does not matter.

However, in our physical form as humans, we have to be very cautious of the verisimilitude of what is "Spirit" and what is being a "Spiritual" person.

Yes, a homosexual person can be a "Spiritual" person, Healer -  as much as a  heterosexual, Transgender, Intersex person can be. But, being a "Spiritual" Heterosexual person does not necessarily equal Gay.

A person that is a Healer, whether Spiritual Healer, a Pastor or a Sangoma is a vessel of the Spirit. The Spirit relays on you as a Healer to carry its messages to the living, as it cannot speak on its on, and it takes the form of ones who previously had bodily presence. The Spiritual Healer cannot not choose the form the Spirit takes. 

If you are a Healer, a Gypsy, Seances, a Mystical Prayer, a Sangoma  - the "SPIRIT" does not phantom and control your gender, you having sex and your sexuality. Your metaphysical self does that.

If you want to argue with me, show me a GAY person like Somizi and I'll call a Priest to come exorcize them.

And I am a Heterosexual Healer..........

WORD TO THE SEX SPIRITUAL SPIRIT REVOLUTION  

Linda Sakazi Thwala

 Follow on Twitter @SakaziThwala 

THEY WANT WHAT YOU HAVE....

It's funny how the world and the perception of relationships, love and loving has changed. People no longer want each other. They want what you have.

These days couples, rarely associate their real affection to each to something godly and beyond their conception. Something that crabs their inner being and carries it......just because.  A man and woman, a man and a man, a woman and woman - couples no longer find cosmic correlation to being in love and being loved.

Love, being loved and being in love is a realism to materialism.

Take a rose that stands on the noisy, humanised concrete, and compare it with the a rose that stands in the quite hot desert . The one gets nourishment and affection from knowing eyes of appreciation, and untimed rains that come and go mysteriously - love. Whilst the other feels the scorching eyes of the hydro draining heat, finally immolated without ever being seen, picked or known - no love.

Would you rather stand in the desert with a sunny incendiary Blesser, and be consumed by an inimical, unaffectionate, heinous, greedy person? Or you would rather stand on the noisy humanised concrete?

Keep this in mind, a materialistic seeking mind has impetuous, quixotic, ill-starred condition to it, hence its short-life-span filled with sexual, emotional and physical abuse - at times immolates a person, unconditionally. 

Most would argue that, 'love pays no bills', but is a life without love and being truly loved worth living.

In this day and life, it's what you have materially, that crabs a person's affection for you. Not who you are..... and who you are, that's another whole debate on it's own.

WORD TO THE LOVE AND AFFECTION REVOLUTION

Linda Sakazi Thwala
Contact Sakazi cell: +27719727764

THE VOICES I HEARD WHEN I GOT MY CALLING

This is a first: I have never talked about my experiences that encompassed my "Calling" as a Spiritual Healer. Many in my family have vociferous opinions, wondered and  speculated about my journeys into the my spiritual descent, affirmation, bonding, acceptance and  ascendance. A child of the Ancestors.

As a supposedly anointed 'child of the ancestors'' my journey of initiation into my Heal-Hood was a smooth transitional, traditional process that had only a few  hiccups, here and there - alike many who venture into their own Calling process, only to find that they've delved themselves into a tumultuous road of concussion, madness, and no returns. Mines, in comparison, was a smooth sailing ship across the ocean of purity. I was very lucky.

The voices I heard when I got my Calling, were a gradual manifestation of who I  am and will be in the coming life - a Spiritual Healer.

The voices started when I was very young, in fact they started as far back as when I was a toddler, manifesting in dreams, that turned me into a 'sleepwalker'.

In my dreams I was always in pursuit of a 'river maiden' that always called me to come play with her. She was light as snow and had white dress on and she was my age, but much clever and articulate than I was at that age. She always wanted to play. However, we always seem to lose each other in the daylight of night, and never really arrived to any particular playground or field, but she always wanted to play.

The 'river maiden' was accompanied by an older woman who manifested  as  'the mother' of the maiden. It was she, the mother that ended our playtime in my dreams, and  I  would then wakeup only to find myself a few meters away from my bedroom door.
At times an adult in the house would hear sounds in the night and come into my room, only to find me stand a talking to someone that isn't there - a young girl.

During breakfast, on Saturday or Sunday mornings  I got grilled about this girl, her origins, who was she, and when are they going to meet her. The problem was, she only lived in my dreams., and had lived there never since I could remember.

When I was in primary-school, my girl, the 'river maiden' appeared my dream at my grandparent's place in Katlehong and ask me to come out and play. Now, the problem here was that I had fallen asleep whilst everyone was still watching television, a while before bedtime, and everyone was surprised when my sleeping self stood up and walked into the yard, where all the renovation equipment was packed and started casing after an invisible person, laughing and pointing. Until my grandfather interrupted my play by waking me up with a stern voice of disapproval, of me playing in the yard  at night. My girl ran away, and I dreamingly pursued her, only to realise halfway during my pursuit that my grandfather was shout at me. I woke up! Turned and looked at my grandfather, turned and looked at my girl, who was surprisingly, still visible as she ran into the the daylight of night. She turned back and smiled at me, but I was by now in all tears and crying after her. My grandfather shout something that was lost in the darkness behind me. I looked at the  ground in front of me, that was still daylight of night. Half awake and half asleep, I fell hard, face-down into the concrete ground that become dark. And my girl was gone. My face was bruised for days.

She never come in my dreams after that occurrence, but in highschool I started hearing her and her mother calling my name at sporadic moments: at times when I was in the library, the girl will call me and i would go in the direction she was calling, and there i would find a very interesting book to read; at times the the mother would calling and I would change my direction, only find that I averted a life threatening situation.

And so began my Calling................

WORD TO THE  CALLING REVOLUTION

Linda Sakazi Thwala

WHEN IT ALL CEASES TO MAKE SENSE…. GO ON

Sakazi L. Thwala

Relationships are very important, and do shape the type of person you become – relationships characterise contributions you make towards others and formant a rhythmic path that will either lead to a note worthy success, or a derailment,  the end of you, who and what you are, forever.

In all your relationships, you have to find balance, a sense of who you are and never lose your individualistic path to growth, enlightenment, peace, love, and benevolent transcendence.   
 

Even when it ceases to make sense – as to why do you need to maintain a certain relationship. Who are you doing it for, and for what reasons does it need to be maintained.

A note to self: When it all ceases to make sense… Go on living, and all will make sense at a certain moment of your life, when you least expect it to.

Don't give up. It will dawn on you*

WORD TO THE HUMAN VOICE REVOLUTION

Linda Sakazi Thwala

AN OUTCAST..... FOR NOT HAVING CHILDREN

Having children is a life changing decision that needs, two, if not one strong-headed  couple, or individuals to jump into. Like marriage, having children can alter one’s outlook  on life and decision-making process because, when you have children , they most likely will come first in whatever move or decision you make. Having children is a life changing decision.

Can an individual be an outcast for deciding ‘not to have children’? 

Well, it seems that a number of individuals who choose not to have children are subjected to some form of abuse, one way or another. This abuse can come from a family member, a friend or friends, work colleagues, your peers and in some cases, neighbours.

 It is true that when you don’t have children, you have time in your hands to do whatever your heart desires during your leisure times. It is equally true that, when you don’t have children you can actually have more money to spend towards anything you want or need because you can afford it. Conversely,  some couples or individuals cannot, cannot afford to have their own children.

Individuals who feel the struggle of bearing children, and the  humongous responsibility that comes with “having children” , can be shrew towards those who can’t bear children, towards those who will  be financially incapable to provide for their own children, if they had them.

Some ill-hearted individuals feel that it is socially unacceptable if a couple or an individual doesn’t have children, when they themselves are fully fledged, and can take care of themselves.        

  

It is a well-known fact that some babies are conceived, without any formative plan, and are branded a ‘problem’  and in some cases are left on the side of the road to be picked up by a drifter motorist or pedestrian, then taken to a Children’s Home - the worst scenario: these ‘problem’ babies are left to die and do die because, no one saves them.

Personally, I don’t have children because, I feel that having children is a very significant  arrangement  between two individuals, that can alter their progress in life, for the worst or for the good, taking into cognisance, the little person or little people that you are bringing into this world.

I personally feel , one needs to have children with an individual that is prepared to compromise; prepared to be willingly be  a mother or father; prepared to provide for their child (ren) ; prepared to strive to be emotionally and physically available. Be prepared to love and protect no matter what happens.       

When you have children doesn’t mean that the next individual that doesn’t is no human being and is an outcast. Labelling those who don’t have children as outcasts,  creates a bias social cohesion – a social cohesion which is initially base on choice.

WORD TO THE LET’S HAVE CHILDREN REVOLUTION

Linda Sakazi Thwala

Contact: 0719727764
e-mail: lindasakazithwala@gmail.com 

GOD IS THE MOST HIGH

WHAT DOES IT MEAN TO BE BLACK?

The narrative of what it means to be black is a consciousness that was embedded by the Father of Consciousness, Steve Bantu Biko: In  the book, I Write What I Like “THE DEFINITION OF BLACK CONCIOUSNESS”  , in 1971, Biko defines blacks as ‘those who are by law or tradition politically, economically and socially discriminated against as a group in the South African society and identifying themselves as a unit in the struggle towards the realisation of their aspirations.’

South Africa’s social and political standing has since been transformed  into a Democratic State. However,  twenty years into our young Democracy, black people are starting to rise up against the notion of being white and treated as whites.    

Prominent  black people are starting to revolt against the notion of being white, of being taught in a Whiteman’s language, living in a Whiteman’s world.

Traditionally black people were not given a choice to assimilate their cultures with the Eurocentric and Westernise styles of living. Black people were forcefully attributed  to the Whiteman’s world as subservience to the Whiteman’s style of living, and only as  second-class-citizens – which was and still is a human rights violation.

This infringement on  black people, as dark beacons of prejudice, inequality and lesser-class-beings has been recorded through history, wide-reaching, as a gross-negligence, inhuman and racist injustice by white people upon the black population. Taking away their inborn identity, as part of the human race.   

Inside today’s South Africa, a Social Economic Transformation is needed  to restore the pride and identity, that was taken away by the white colonisers, to erase the far-reaching abuse that has clouded the black mentality for centuries.    

Steve Bantu Biko states that firstly: ‘Being black is not a matter of pigmentation – being black is a reflection of a mental attitude.’ Secondly: ‘ Merely by describing yourself as black you have started on a road towards emancipation, you have committed yourself to fight against all forces that seek to use your blackness as a stamp that marks you out as a subservient being.’    

In seeking the true black identity, we as South African black people have to be vigilant of mitigating old Whiteman’s racist tendencies with our own superfluous racist approach.

We cannot deny that our pigmentation has been a source of ridicule, to help guide the way of life for white people. Justly, we also cannot deny that black people are proud, multilingual, multi-coloured, non-racial , non-violent, non-segregating nation. Even through the extremities of neo-Nazi  racist white lefties. The black nation remains strong and connect as one.

In our connectedness many polarizing adversaries on what it means to be black: i.e. the Foreign Element in our neighbourhoods, Economic Emancipation, Land Repatriation, the true South African identity,  greedy Politians and Political parties, and our own ignorant corrupt government  - stand to degradingly pull away our democratic right, black identity and pride, that our elders stood for and fought for, for decades. 

A neo-black revolution on black mentality and black pride has commenced* 

The debate goes on!

WORD TO THE BLACK PRIDE REVOLUTION

Linda Sakazi Thwala

A MISHMASH, MEETING OF SITUATIONS

Into my subconscious, my thoughts, the relevance of what  has been, what is and what will be. A frisson awakens my soul, death before life, blubbers of hunger, unspoken truths, unexplored desires, expectations , dark truths, white lies. 

It took shape in that murky mysterious place – a rushed, fumbled  grumble. It became what it became. An unintentional emotional phenomenon, shaping in slapping stomping roughness  sweat. A force, unto a much needed surrender. An emulation of a thing that is progression, that can never be termination. A rushed, fumbled  grumble – a  thought that could be what you make it to be.  

An instinctive realism, a mishmash meeting of situations –  an anticlimax in that film of a huge disruption. Bang! Bang! A peak. An explosion! A climatic climax coiling over-and-beyond, thundering like the mysterious drums that echo at dawn. An echo of progression. A spiritual sequence. You have to care!

 “Somebody has to care.”  You have to care, or you are not going to go anywhere. It’s a preface to everything you put your mind and soul to. You have to care! Whether you are drunk or sober, standing or falling, sleeping or awake. You have to care! Be clear-headed like your subconscious, for those that try to escape their sobriety , are always trying to escape their reality, their subconscious is biting deep into their soul. You have to care for those lips you put your kiss on. Care for those thighs you warm with your hands. Care in the dark and care in the light.

The revolution of the soul is becoming but, can only be realised by the flourishing body. It is the root of a progressive persona. A blubber of hunger, unspoken truths, unexplored desires, expectations , dark truths, white lies. It cannot be a rush, it cannot be a fumble, it cannot be a grumble.

It is a mishmash, meeting of situations. It is life that knows that death is to be expected, ‘for where there is life there is death’. Every smooth road has its humps and bumps -  as life has affections, amusements, extreme dislikes and mourning.   

 Into my consciousness, my reality, my relevance of what  has been, what is and what will be.

The future is coming*                                   

WORD TO THE MISHMASH REVOLUTION

Linda Sakazi Thwala