Saturday, September 2, 2017

Article 3 : Living With A Chronic Illness


If you feel like a worthy person, you will have a reason to stay alive.  Know that you are a worthy person; no matter what anyone says.  You are worthy to enjoy the best life that you can under your circumstances.  I am worthy of having my husband come in and talk to me for 30 minutes in the evening instead of watching television.   I am worthy of a telephone call “I’ve been thinking about you.  Is there anything I can do for you?”    When I ask my husband to knock a nail in the wall (because I can’t do it myself anymore) or any other thing you need (and our needs are small – we are fully aware that we are asking a favour) – we are worthy of it being done.  Surely we do not have to ask 5 times until we sound like we are nagging?  This is written by a woman, but I am aware that many men also have the same problems although their needs may be different from a woman’s needs.  We are worthy of asking our partners to please go to the chemist to buy our nappies we need.  We are worthy human beings.  Being chronically sick does not make you less important than healthy human beings.
I read a book written by Paul C Roud, called Making Miracles.  It was an eye-opener of note.  He was interviewing a woman who had been given 3 months to live and this was 10 years later.  The interviewee said, “It’s ironic, but my sister and brother were jealous of me, jealous of all the attention I got:  My sister admitted to me that she hated my guts because so much of my mom’s time was spent on me”.  Well, that is what happened to me too.  I wrote about it in my book Shattered.  And these are not children – they are adults.

I loved the story I read in his book about the woman who came home from the doctor with bad news on her cancer.  Her husband was lying on the couch and the first thing he said to her was “What’s for supper”.   The next morning, she packed her cardboard suitcase with her clothes, took the little housekeeping money she had, climbed on a bus and checked into a boarding house.  The next day she went to the lawyer and asked him to get her a divorce.   When he asked her why she said, “I have been living with that man for 38 years.  If I only have three months to live, then I want it to be a happy three months’.    Her interview with Dr. Roud also took place ten years after that bad diagnosis.  My advice is to do whatever it is that will make you happy. Don’t worry about what other people say – it actually is none of their fucking business.  

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.