Saturday, September 2, 2017

Article 2: Living With a Chronic Illness


The unknown also holds a promise that anything is possible.  Let go of your past life, think about what you want to do that you love to do, don’t think of the negatives in it – the negatives disappear once you doing what you love.  Anything is possible.  I was a people person – a human rights activist actually on the ground, doing the most hair raising things.   Now I have moved that activism onto social media and I am writing.  Writing is what I love to do.  If one person can be helped by reading my work, then the book was worth the time and effort put into it.  The greater the hardship of the journey to get to finding and doing what you love, the greater the possible outcome.
It is impossible to do more than one thing at a time.  People do not understand this of a chronically ill person.  We are already doing a lot of things just to stay conscious to what is going on in one’s body while at the same time trying to focus on more than one thing.   It drives us crazy.  Have some patience with us, please.
What the fuck is wrong with doctors?  Doctors are only worth the amount of respect they have for our souls.  The other day I heard a doctor tell a terminal cancer patient who had not eaten in 10 days, to go home and cut down on her morphine dosage.  Why?  What kind of doctoring is that?  He cared nothing for her as a soul or even as another human being.
People with cancer and life threatening diseases experience intense feelings of isolation.  This disconnectedness from society can shrivel a person’s will to live.  So if you can, find one of us to visit or to phone now and again.  We are not asking much.
There is a culture of “deal with your pain “rather than become dependent on pain meds amongst many doctors.   Why does one have to suffer if there is something that can help us?  Who gives a shit when we are balancing on the rail between life and death if we become dependent on it?

My own reality of my ‘appalling’ illness is very different to that which others perceive.  I call it appalling “because what is wrong with me is diagnosed 1 in 10 million.  That does not make me special.  It does not make the doctor sit up and think “mmm … here is a challenge for me”.   It makes me a problem with a capital P. 

Article 1: Living With A Chronic Illness


There are many people who live with chronic, debilitating or incurable conditions.   While most people take their health for granted because they are in the majority – chronically ill people take nothing for granted.  If the hand moves, if you breathe, if your heart is beating in rhythm, if you managed to get out of bed and go to the toilet on your own if you could brush your teeth … all these little things we rejoice in.  To be able to have a conversation with someone without losing your breath or diving for the oxygen, it is a wondrous event.
Some of the things I have learned during my 6 years of survival (because one cannot really call it life because life is LIVING and we are not able to LIVE to the degree a healthy person can) are the following:
Some people are not aware of other people’s feelings.  And once it is said, all the apologies in the world won’t take it back.  Chronically ill people use social media to maintain contact with their own species.  One of the terrible ordeals is to be put in a place where contact with other humans is thwarted – we are social animals and we need to socialize.  What is written on FaceBook lives forever and forever in the heart of a person who is chronically ill and a nasty or stupid comment makes the light shine a little less bright.
One of the key ingredients of doing well with a major illness is to believe that anything is possible and if today was bad, tomorrow holds the possibility of being a better day.  Not a well day – just a better day.  Maybe tomorrow you will have less pain, you will vomit less, you will stop shitting through the eye of a needle and you may even get a visitor.  We have to believe that anything is possible.
If you want to stay alive you have to have a reason to do so.  Doing what you love to do and loving what you do is an important ingredient that gives one a reason to want to stay alive – because death would be so easy for any of us.  All we would have to do is give up and then take a bunch of our medications.  I do not believe that there is one single person who suffers from chronic illnesses who has not done the research on how to kill themselves properly and how much medication it will take. 

Thursday, July 13, 2017

Inmates are the Scourge of the Earth

To most people, inmates of prisons are the scum of the earth.  How many times have I heard the “He did the crime, he must do the time” and how often have I heard derogatory remarks about prisoners?  We watch the news or read the newspapers and actually get a kick out of reading about another person who is put in jail for a long period of time.  Inmates are viewed as the scourge of society and I am going to do my very best to show the world that prisoners are people too.  I think the worst thing I heard being said about an inmate is that “I hope he rots in jail”, or “he does not deserve to be treated like a human being and therefore should have no human rights”.
I made a commitment today – a commitment to the young and old men in Medium B at St Alban’s Prison.   I have committed myself to be their liaison officer, their mentor, their go-between, their friend and their confidante.   Against doctors’ orders and the absolute horror expressed by my mom and my husband, I went and did a three-hour workshop on debating, reviewing and writing skills for approximately 25 men.   I don’t know who had the better time – they or I.  I had an amazing time spent with such an incredibly diverse and yet coherent group of men.  Not once did I feel threatened in any way.  I was in a very safe space, no wardens around and just the inmates and me.
I prepared nothing – I was skating on my arse with the experience I already had.  They had prepared so many things for me; two reviews on one of my books, a Capella with rap, poetry written and recited to me … they were amazing.  And Heinrich van Rooyen organized all that to take place.   A huge big thank you must go to Mr PC Plaatjies, the warden who made this all possible.
We were serious, we laughed, we squealed with delight – there was nothing but sheer joy in that classroom for three hours today.
Those are not animals in there, as I have also heard them described.  They are gentlemen; they are intelligent, pleasing to the eye and most entertaining.  And each and every one of them have crept into my heart.  As I always have to have something greater than I am to live for, I will be living for this group of amazing human beings as well.

Who amongst us all, have not committed a sin?  Who amongst us all, have never made a mistake?  It was a privilage and an honor to spend those three hours in their company.  Those are my boys now!

Tuesday, July 11, 2017

Open Letter to my Siblings

I hope you will look at all your good qualities and realize how important you are to those who love you.
Reflect on all the things that make you – you.
I hope you’ll find ways to make the difficult times easier, your cares lighter and the days brighter.  I pray that mysteries will unfold for you to make a difference in your life now.
I hope you’ll tap into that source of strength I know is within you, that place where hope and courage live and new ideas are born.
I hope you will connect with the kind of faith that helps you to reach your chosen goals.  As you ease from one day to another, I hope you find time to consider the miracle of your own life and the beauty of your humanity.

I hope that a band of ministering angels will hover around you and protect you. 

Saturday, July 8, 2017

Some Days are Just Shit !

Some days are just shit. We all have them. There is no other word to describe it. You feel so down and demotivated that you can fly kites under a carpet with ease. No one can say anything to lift your spirits and even if there are those who care, not even their words can lift you out of the doldrums. There is just no wind beneath your wings. You don’t know what steps to take to change the situation. You stuck in a no man's land, alone with just your overwhelming negative thoughts that come from something that was done to you that was unfair, cruel or even something that you would never do to another person. This period of unrest of the soul is needed so that the debris and the dirt can be discarded and a new plan and life can be carved out of the old. So, sometimes these shit days are necessary. Today was one such day for me. Tomorrow will bring numerous ideas and plans. And then the kite can fly in the sky again

Wednesday, July 5, 2017

Why Would Someone Risk Everything to Make a Stand for Human Rights

Ken Wiwa, the son of Ken Saro-Wiwa, a human rights activist who was executed in November 1995 in Nigeria, asks in his book "In the Shadow of a Saint", "What is it that compels a man to risk everything - his life, his family, the lives of people around him - to make a stand for human rights?"


I am trying to answer this question. It is not religion. It is a deep horror of injustice that drives me to do something about it. It is also a feeling of being the only one to really see the pain and abuse, the feeling that not enough people are prepared to do something, or to take action...this is what drives me to take more and more risks. It is a feeling of not having enough time and of a job that is too large to complete. It is a feeling of living in the moment because tomorrow will be too late. It is a feeling of every life being precious and if nothing is done about the other out there, then nothing will be done about these around me. It is a feeling of "if I look out for those, then these of mine will be OK". It is a deep resentment of the abuse of others. It is a loathing of unkind and uncompassionate behaviour. It is the contempt for those who sit by and do nothing, knowing that while they look on they are as much to blame as the abuser and the oppressor. It is a feeling of frustration that pushes me to the limits of my endurance. It is an all-consuming love of the people, of those who need protection the most.

Thursday, June 29, 2017

The Truth Teller - The Impimpi...Why Now?

The year I got sick 
It has taken years of chronically and often life-threatening illnesses to strip away slowly at everything that I held dear in my life.  And suddenly I was facing an adjustment disorder.  I have my own psychology degrees, so it has been a case of healer, heal thyself.

Apart from ill-health, there has been enormous financial strain with added expenses which have made us fly kites under a carpet.   It is not easy to start a new life at the age of 61 for my husband, starting from scratch in a country he had not lived in for over 20 years.  

With what I thought was an amazing opportunity, I got an online computer job writing web content for the SEO of a pharmaceutical company – yes, writing about Viagra and all the generics for erectile dysfunction.  No one else wanted the job, so I took it.  I know one hell of a lot about impotency and soft and flaccid penises now.  The remuneration was wonderful and for a month, we were starting to float.  The following month, the person in charge dropped the ball and all the writers were fired, without pay and with immediate effect.  After chasing the story down it was found that the pharmaceutical house was nothing but an online drug dealer.  So that went out the door.  Back to flying those kites under the carpet.

Then I got very sick. I was drowning in my own fluid.  Discovery are amazing – they have come to the party and I am being home nursed with drips and all the paraphernalia I need.   While I have been lying here, writing and thinking and pondering and reflecting over the last three weeks, I have had to take a good long hard look at what I want from life.  Being one in ten million people with this disease does not make me special – it makes me a problem.

The crying and the grieving has been done.  It is time to dry the tears and get on with the business of living.  My spirit does not belong in this body. I am like the old lady struggling to move down the street, but her shadow is a young girl dancing with abandon.

I made the decision to share my life, every bit of it - the nice, the good, the ugly, the bad, the not too bad and the not too nice; leaving nothing out…telling the truth 100% of the time.
There are many reasons for my decisions. Some are:
  • Giving the abused child of my heart a voice 
  • Allowing my soul to soar with freedom
  • Making myself transparent
  • To be truly authentic I must be brutally truthful about everything that has been, is and will be in my life 
  • To allow those who have been damaged by part of my own past to come to terms with their healing as well 
  • To show that child abuse affects a person their whole lives but that there is a way to become a survivor
  • To become a ferocious activist for prisoners - particularly for those who are incarcerated for crimes they did not commit
  • To inspire, help, encourage and provide my own brand of quotes for people to use to reflect on their own lives and to just have a good laugh
  • To do what I love and love what I do and that is to write – so the books will come, the blogs will come and … we shall see what the good Lord Himself has in store for me.

There will be those who will not like what I write, but that is their business and not mine.  They do not have a gun pointed at their heads forcing them to read what I write.   But I do know now that there will always be thousands more people who will appreciate truth rather than the bullshit that is spoken so often

I want my life to have meaning and I want to leave a legacy with my stories for my grandchildren to know who I was one day.  What better way than to tell my own truthful stories. 
I am now a freedom writer!  And probably an impimpi as well!