Tuesday, September 5, 2017

Look what I got in my FB Inbox tonight

Every morning I drive 37kms to town for kids school... I then go and park my bakkie at the court where I sit until 13:30 when school comes out. Then 37km back home. Then washing, if theres water.. cooking... kids.. homework.. and and and. We stay in a very old farmhouse.. bathroom has half the floor missing.. ceiling is completely ruined. Ive applied for I dont even know how many positions. No luck. 3 years ago I was on top of the world. I was the first ever Loss Control Manager for Pick n Pay. Handpicked for the position. I fell really hard...I could not even buy my 8-year-old a birthday present. A friend arranged for a cake and I had some balloons. We had a small celebration Sunday afternoon. The birthday girl asked when will she be getting her present. And I had to lie to her. I have 3 amazing children. My son is a genius, oldest daughter head girl and the little one is all in one. I dont know why Im telling you all this. I know you have a busy life. I'm depressed today because I lied to my little one. Im angry because daddy just never gave a fuck. Im glad I got rid of him when I did. Im grateful that hes not part of their lives. But I hate him for not caring. Im sorry for telling you all this. Im not looking for sympathy. I have so many blessings and am very humble and grateful. Im sorry for not having money right now. I wanted to spoil myself with your books as I love reading you. I've had a shitty life.. but want to be a Dianne one day. (Lord help us - one is enough) I hope you sleep well. We should get together. I will start playing Lotto xxx

I am going to send her my books - that is the extent to which I can help. If you can provide that little one with a birthday present, you would be changing the world for one family. Contact me. They live in Heilbron.

Monday, September 4, 2017

Three Hours With 20 Prisoners

I spent the morning with 20 inmates at St Albans Prison today.  I went there for National Library Week and did a workshop on writing.  Writing can help anyone to overcome their traumatic past through the cathartic experience of re-telling the story and dropping the emotional baggage that keeps you captive.  Writing frees a person and allows one to dream and set goals again.   The pen is the voice of the soul.   It was a wonderful day and we all enjoyed ourselves. 
I wish the public could just once have the honor of sitting with a group of inmates (because it was an honor for me) and you will soon realize that these are human beings – they could be your brother or father, your son or your uncle. 
Society has such a negative attitude towards prisoners.  Easy to say “You did the crime, now do the time”.  The saddest thing of all is that approximately 14% of our prisoners are incarcerated for crimes they did not commit but are sitting there because justice is bought in our country.  Advocates play Russian roulette with people’s lives swopping one accused of another and organizing the sentencing before they have even been to court.  And this is not even the shoddy and despicable police investigations we are speaking about.
There are more criminals that need to be in prison that are on the streets than the prisoners I met today.  The room was filled with so much potential.  Many people on the street and out there are not in prison because they just never got caught.  
You may wonder how I did it – spending three hours with 20 prisoners (and one or two wardens for 5 minutes at a time now and again) being sick.  Well, I did it with an oxygen machine and a wheelchair – I was assisted the entire time by the men and even had a medical professional administer my medication through my port.
God carried me through the day – after all, this is His work and we were told to visit prisoners.  I had a very happy day.  And I am the richer for it. 

Saturday, September 2, 2017

Article 4: Living With a Chronic Disease

It’s a lot harder to beat depression when you are clinically sick than when you’re not.
Doctors and physicians are very reluctant and loath to challenge one another’s diagnosis.  It is a dirty medical profession secret.  Everyone has a lot at stake.  The first opinion may be wrong and you die.  The second opinion may be a better option.  The physician has your LIFE in his hands – your LIFE and your SOUL and you deserve respect for that.  Doctors must start coming off their high horses and start becoming more truthful.  If they don’t know they don’t know.  We would respect them more.
Because most cancer and other debilitating diseases can be a very clear warning of death, we tend to filter out the information so that it confirms the belief you already have.  If you think you dying, you will filter out the high percentage that live.  We must listen more and be open and transparent.  We must learn to ask the right questions, even if you write them out at home before you get to the physician.
Doctors must empower patients – they must allow for patient participation instead of playing at being god and expecting us to swallow everything they say.  A participating patient will live longer.  I am so participating that I tell the doctors what is wrong and what to do now.  My life is important and I want to live it the best way I can.  I don’t care if the doctor does not like me – I will go to another one.
It takes one human being to make the difference between life and death.  Just one human being who cares.
Cancer patients universally know they have cancer before the diagnosis.

Set aside a little time each day to relax and be at peace to allow the spirit to flow into you from God.  It is like a telephone.  Shut up and listen. 

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!