Dying is a lonely journey. Not only for the sick person but also for the family. As hard as we may try to avoid death, the truth is that we do a lousy job of it. Science and medicine will certainly postpone it, even staying healthy might seem to delay it, but the harsh reality is that death does not wait for you, it does not ask you, and it does not listen to you. Death ignores your feelings and wants; you do not matter to death…Death is the only certainty in life! We need to remember that our existence here is fragile, and we never have as much time with people as we think we do. If there is someone or someones out there that you love, don’t neglect that and don’t put off engaging with them because waits for no-one… Vic's Journey ended on 18 January 2013 at 10:35. She was the most courageous person in the world and has inspired thousands of people all over the world. Vic's two boys are monuments of her existence. She was an amazing mother, daughter, sister and friend. I will miss you today, tomorrow and forever my Angle Child.
I truly felt that I should shatter some of Vic’s ashes at Chaka’s Rock. Once I got there I started doubting the wisdom of my decision. We walked on the beach and I waited for a sign….for a white feather to find me.
Friday morning it was time to return home. I had still not received a feather….and Vic was coming home with us – all intact!
The boys and I decided to scatter flowers for Vic. She loved symbolic actions!
It was a pretty dismal day. It was as if the angels were sad for us too… It was gently drizzling when we made our way to the beach. We decided to go to Vic’s favourite spot. Every single year Vic would insist on getting to the beach at least once! She walked with drips stands, we pushed her in her wheelchair, and we carried her to the edge of the water.
The tide was coming in. For a while we just stood on the beach staring at the sea. Looking at the gentle waves crushing on the sand I knew that the flowers would be washed out again.
I tossed the first flower. The boys followed suit…
I stood there mesmerised by the ethereal life of the crashing waves. It was as if the waves whispered “I was here and I lived a life”… Waves formed, were pushed toward the shore, where they collapsed and returned to the ocean. Sometimes waves leave behind ocean treasures they have picked up and carried along with them. Sometimes, the foam, created when air mixes into the water, is the only thing left behind. On Friday the waves carried the flowers back and forth – back and forth crushing the flowers and disposing of the gentle pedals.
The boys and I wrote on the sand. The waves erasing our words….
We stood and our tears mingled with the salty sea water.
The flower pedals were strewn on the beach in the shape of a half heart…
After a long time we left. Our faces wet from the rain and our tears.
Strangely we were at peace. We had survived another first. Next year we will return to Chaka’s with some old memories but also with new memories!
Over the years I have been deeply hurt by people of faith and religious institutions’ i.e. churches. I have spent many years of my life researching religion, seeking answers to my questions; to life’s twists and turns.
I believe in God. I believe in life hereafter. I believe that what we are living is hell and that heaven awaits us. I believe we are on earth to learn lessons, perfect our souls. I believe that we will return to earth until we have perfected our souls.
The “mind switch” was Passion of the Christ. I cried for three days. It was the most barbaric thing I had ever seen. I could not and cannot equate that to love. The other “mind switch” was the lovelessness of most “deeply” religious people. So I look at religion and this is the conclusion I have come to…
“Love” is The Big Commandment…. Matthew 22:36-40 NIV Love the Lord thy God with all your heart, and with all your soul and with all your mind. This is the first and greatest commandment. And the second is like it. Love your neighbour like yourself. All the Law and Prophets hand on these two Commandments@ Love God Thy Father and the second commandment that is equal to it “Love Thy neighbour”…
Love Thy Neighbour is quite a mouthful. Who is my neighbour – the person who lives next door to me in his multi million rand house or his domestic worker living in a room the size of a stamp on his premises? Maybe “my neighbour” could extend to the socio economic group that I equate to in my suburb or city? Hells bells, if I am generous the rich in my country may qualify…. But the people with different pigmentation and less money? No, no no!
Now let me spell it out. The way I see it
If God is a God of Love would He truly condemn people to eternal hell for not believing a particular version of religion? I know so many wonderful Muslim people who have “white souls”, who are kind, compassionate and generous. They would never deliberately harm a fellow human being. I know many beautiful Christians who are kind and compassionate and generous. I know that in a country like Saudi no money will exchange hands whilst it is Salah (prayer time). Restaurants and shops CLOSE for prayer 5 times a day and if you are not praying you will stand around in the passages of the shopping centre. You will not even be allowed to remain in the restaurant.
In my country and everywhere else in the world people of other religious groups will drink too much and talk about Muslims in a derogatory manner. They will call them heathens… They will lie and steal but take the religious high ground because they are “Christian”. And by the way, please do not inconvenience them and their social life by getting ill….If you are so inconsiderate – please die quickly so their lives can move along at it’s comfortable, fun filled pace.
Worldwide racism is alive and well. Where there is no racism it is tribalism, elitism that keeps hate flowing through the world.
For many years I did so-called “charity” and evangelism work in the poor rural areas in South Africa. Today I admit I am ashamed that I was so sanctimonious to think that I was needed to evangelize the poor. What do you say to a child who is freezing and hungry when they accept the Lord? “God is going to make your life better!”…That would imply that all of a sudden that child would have at least 3 meals a day, a bed and blanket, medical care and a good education…
Let me tell you, so-called evangelists hit and run. They convert and leave. There is no sustainability in what they offer. Most of their efforts are self-serving. Tomorrow that child is going to be cold and hungry and think “that woman of God said God would bless me…Why has He not done so? He must hate me…”
So, I ask the question…who is the “woman of God”? The self-appointed evangelist or the impoverished next door neighbour who shares her last crust of bread with the hungry child?
I don’t believe that there is a single religion that is “right.” There is good and bad in all religions. There is good and bad in every person!
The Catholic’s decided which books were to be in the Bible. The Qur’an is a modified version of the Old Testament. The Torah is another modified version of the Old Testament.
I know there will be a reaction to this post. I know many people will “unfollow” me after this post. That is fine. It is your right to decide what to read. It is my right to write what I believe and have experienced.
Vic often asked me “Mommy, why do you think God hates me?”
The Church deserted Vic. Christians deserted Vic. Family deserted Vic. Friends deserted Vic. Even the most religious of religious did not have enough compassion for my child to lift a phone and ask “How is your child doing?” or “I am sorry to hear about her passing”. Family, yes you read correctly, did not even sympathise. What a cold God they must serve? Yet these righteous self-serving stone-Christians point fingers at others for not being “obedient” to God’s Word. Surely not the Word that says “Love thy neighbour”………
An evening visit to the designated gravesite of Nelson Mandela, prayers for forgiveness to the ancestral forefathers and the tribal elders travelling to Pretoria to be with South Africa’s greatest hero is just some of the drama surrounding Nelson Mandela’s imminent passing.
The gravesite is situated about 500 metres from Mandela’s Qunu residence and is reserved for the Mandela family.
It has been reported that elders in the Mandela family visited the family gravesite in Qunu, on Tuesday evening, to plead for forgiveness from their ancestors for exhuming the bodies of family members in 2011 by Mandla – the favourite grandson. It is tribal custom that gravesites are either visited early in the morning or late in the afternoon.
The elders are furious with former president Nelson Mandela’s grandson Mandla for digging up the remains of his father Makgatho and his father’s two siblings, Makaziwe and Thembekile, and moving them to Mandela’s birthplace Mvezo. The elders have advised the family that “the Mandelas are being punished through making their beloved son (Nelson Mandela) suffer in hospital where he remains in great pain and anguish”. The elders visited the gravesite to plead for their ancestral forefather’s forgiveness and to seek advice as what to do during this difficult time.
The elders in the Mandela family have attributed Mandela’s ill health and constant hospitalization for a lung infection to the “wrath of the ancestors”.
The “wrath” was caused by the fact that Mandla Mandela, the Mvezo chief, removed the remains without consulting anyone.
Elders with knowledge of AbaThembu traditions and customs told the family that this had angered the forefathers which resulted in a curse being put on the Mandela family, by the ancestors.
City Press reported that after the meeting it was decided that elders – men only – should visit the gravesite to appeal to the ancestors to spare Mandela from suffering. Mandla did not go to the family gravesite where the elders had gone to plead with the ancestors.
It was decided at the gravesite that a delegation would visit Mandela in hospital.
“I will be going to see Tata (Father) in hospital. He cannot be alone at this hour of need. He needs AbaThembu and his family next to him,” Mtirara, an elder, said.
South Africa has such a diverse society. One of the greatest problems that face the nation in their religious walk, whatever that may be, is that the tribes revert to their dead for advice in the time of a crisis. On Sundays people will attend church and praise and worship God for hours. Six days a week, they will consult the forefathers or their spokesmen, if they have a crisis…
Superstition and witchcraft is rife in South Africa. Witchdoctors or Traditional Healers is acknowledged as a profession ….some medical aids even pay for their services. Companies have to accept a “sick note” from a Traditional Healer, who has no formal medical training.
Outside the Heart Hospital in Pretoria thousands of people have gathered singing hymns and burning candles in prayer for our beloved Madiba. Elsewhere the bones are being cast and rituals to appease the forefathers are being performed.
In the words of Mandla Mandela “At the end of the day, my grandfather’s fate, like that of everyone else, lies with God and our ancestors”
The prayer/request is the same. “Please end Madiba’s suffering. Allow him to die the way he lived…..with dignity.”
A gentle death, when comfort, caring, and presence are priorities, is invariable a death at home or in the peaceful surroundings of a Hospice In-Patient Unit. The opportunity to have your loved one drift away peacefully, in the comfort of their own home, in their favourite bed or in your arms, with their loved ones there at their side, is truly a gift of immeasurable worth.
Too often doctors keep treating the actively dying person aggressively. The ill person accepts the aggressive treatments doctors keep piling on them even though there is no benefit to be derived from it. At this stage of the terminally ill patient their medical care controls their lives. Pain, NG tubes, stomach tubing, IV tubing, catheters…. They remain hooked up to all sorts of beeping, pumping devices until the bitter end. We are conditioned to accept aggressive life-prolonging treatment that often destroys our family’s financial stability and quality of life.
This is what the medical profession is trained to do. To heal…
It is so hard to die with all the medical technology and treatments available. People no longer die of heart attacks. People go onto preventative cholesterol and blood pressure treatments. They become old enough to develop Alzheimers…
What changes have occurred which mean we are now living longer than previous generations?
During the twentieth century, life expectancy rose dramatically amongst the world’s wealthiest populations from around 50 to over 75 years. This increase can be attributed to a number of factors including improvements in public health, nutrition and medicine. Vaccinations and antibiotics greatly reduced deaths in childhood, health and safety in manual workplaces improved and fewer people smoked. As a result of this – coupled with a decline in the fertility rate – many major industrial countries are facing an ageing population.
According to UN statistics for the period 2005 – 2010, Japan has the world’s highest life of expectancy of 82.6 years followed by Hong Kong 82.2 years and Iceland 81.8 year). The world average is 67.2 years and the UK average is 79.4 years. The average South African is expected to live to at least 60 years, an increased figure when compared with the 2005 figure of 53 years. .
During the Roman Empire, Romans had an approximate life expectancy of 22 to 25 years. In 1900, the world life expectancy was approximately 30 years, and in 1985 it was about 62 years, just five years short of today’s life expectancy.
Why are we living longer? Well in South Africa or even Africa it is because of revised HIV Anti Retro Vital policies. HIV has become a chronic illness. It is no longer a life-threatening illness. As long as you take your ARV’s you will be fine!
Improved food packaging and an increased awareness of the nutritional value of food have led to healthier lifestyles. Increased fitness levels and the reduction of smoking have also paid a major contribution in increasing life expectancy world-wide.
Adverts on buses and tubes inform us of the importance of washing our hands and covering our mouths when we cough or sneeze in order to reduce the spread of illnesses and diseases. Health and safety legislation provides strict regulations for hygiene in restaurants, hospitals and factories.
This is great but we have an increasing older population suffering from diseases like Alzheimers and Parkinson’s. I don’t believe that it is the environment or lifestyle that has led to this. Years ago people simply died younger… Our grandparents were OLD at the age of 60. Now 70 year olds have knee replacements and still play sport.
Vic was diagnosed at the age of 18 months with Osteogenesis Imperfecta. At the time it was a death sentence. I remember the professor telling us that she would not live to the age of 12.
We celebrated her 12th birthday, her 16th, 18th, 21 and 30th birthdays…We celebrated her 38th birthday. Every birthday from her 27th birthday became more difficult. The doctors and I fought to keep her alive.
Keeping her alive came at a price. Eight one (81) abdominal surgeries, literally years in hospitals, pipes and tubes in every orifice of my child’s little body, prodding and prying by strangers hands. She was stripped of her dignity. At times litres of faecal matter poured out of her intestines into bags and bottles….She had to drink revolting liquids, tablets crushed and vomit until she fractured vertebrae.
Why did we not allow her to die with dignity? Why did we fight for her life? Why did we sentence this poor child a violent life filled with suffering and pain? Because I was selfish. I drilled fighting and survival into her little brain from the age of 18 months. Vic did not know how to not fight.
The greatest gift I ever gave Vic was to respect her wishes and allow her to die. It was the most difficult thing I have ever had to do… Retreat and not fight!
St. Francis of Assisi portrays death as “kind and gentle” in the hymn “All Creatures of our God and King”. This is certainly a minority view in our culture and faith. It speaks of a familiarity with death that seems to have been more prevalent in previous generations than it is today. Society sanitizes death. In a culture devoted to the avoidance of suffering, a culture that lives as if this life were all there is, it’s not surprising that we relegate death to the morticians. Morticians do the final honour. They wash and prepare our dead for the last time…
We avoid the sick and funerals. We relegate our dying to a noisy hospital room with beeping machines and staff on a schedule. No gentle music and candles – just harsh hospital lights and a lot of noise 24 hours a day. Hospitals are not trained in palliative care – only curing.
When someone is dying, everyone has to wait. It takes time. All of us have a different timetable. Some wait mere hours. Some drag on for days, others, weeks. It is a lesson in patience. And it is a time when “being” edges ahead of “doing”, and just being present your loved one’s bedside is seen as the ultimate act of service.
We must allow our dying and infirm to die a gentle death. We must HEAR what they are asking! Are they ASKING for more invasive treatment or the right to die a gentle death?
Five months and 7 and a half hours ago I allowed my most precious child to die a gentle death. If I had not ignored her wishes her suffering would have ended many years ago. I have to live with this.
Jon-Daniel’s BBM status today was “Mommy’s dream coming true” with this photo…
Your dream is coming true my angel child. Your Stepping Stone Hospice is functioning, and we have received a building as a donation! Next week construction will start and by the end of the month we will move in!
Behind the building there is a duck pond and a quaint little chapel. I look forward to planting some roses in the garden! We anticipate wheeling our day-care patients into the garden so they can feed the ducks.
Of course we do not have furniture yet. The boys are donating the furniture for the two Dignity Rooms (dying rooms). It was their decision! We want to real make the rooms pretty and lively… We will play gentle music and burn candles like we did for you… It will truly be rooms of love…
Yesterday I was at the site and I was looking at the terrain that they were clearing. All of a sudden there was this perfect white feather…Another message from you Angel. Thank you. I needed a sign…
Stepping Stone Hospice is daunting. This week an article appeared in the Tames Times. It opened a floodgate of telephone calls… An elderly man called. His voice was raw with grief and despair. His wife is dying from liver cancer and he is going through all those familiar caregiver anguish. How will he know when it is time? But she is still working and in total denial…He did not want help and will put my number on speed dial… I experienced what Arlene must have experienced when I phoned her the first time…. Quite a few new patients this week…so much pain and fear…
We have had wonderful offers of help. A woman phoned today and said that she did not know how to care for a sick person, but she was prepared to go clean a sick person’s home… We have had offers of help from professional councillors, people from all wards of life…Now we can only hope and pray that people will volunteer furniture and make some financial contributions!
I am amazed at the goodness and generosity of people. The company that donated the building belongs to a young man, Jaco Schultz. You would have liked him my angel. He is really a nice young man with a “white heart”.
I can hear you asking “Where did you find him Mommy?”
I did not find him. He found us! Long story…here is the short version!
We sell second-hand clothing to raise funds… El-Marie, Jaco’s sister took 14 bags of clothing to Trix. Trix (a wonderful woman with a superb sense of humour and a passion for Stepping Stone Hospice) told her what we do with the proceeds of the clothes (we buy medication for the indigent patients). Two weeks later she dropped off more bags and asked whether we could meet her brother…
The meeting itself was quite funny. It was when I had that terrible flu. The morning of the meeting I hardly had a voice, my head was throbbing and I was certain I would die. Remember the woman you met, who lives around the corner from us and whose daughter-in-law was paralysed in an accident in December 2012? She was at the meeting. I was so scared I would spread my flu germs, and she would contract my flu, that I wore a facemask – I did not want DiL’s death on my conscience. It must have looked so funny! Me with this horrible surgical facemask… gasping for oxygen and only breathing in concentrated germs!
Jaco asked to see the terrain, and we went on a walk-about. He asked whether a tree could be moved….We had a promise of a building that would have a small day-care centre, two dignity rooms, a treatment room…! As easy as that!
Within weeks the promise is becoming a reality. Construction starts next week! I am so excited! So my Angel Girl, there was a purpose to your suffering after all. I wish it was differentbut it isn’t. We have been blessed beyond comprehension.
I believe that God is personally overseeing this project.
“To laugh often and love much; to win the respect of intelligent persons and the affection of children; to earn the approbation of honest citizens and endure the betrayal of false friends; to appreciate beauty; to find the best in others; to give of one’s self; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; to have played and laughed with enthusiasm and sung with exultation; to know even one life has breathed easier because you have lived—this is to have succeeded.” ~ Bessie Anderson Stanley
To laugh often and love much – That Vic did. She always had a smile on her precious face. Even when she was in dreadful pain she would try to smile. When she was in a lot of pain her laugh was shrill. Pain seldom stopped her from laughing… In 2007 I said to Vic that my life was sad.
“That is terrible Mommy. Why?”
I felt like hitting my head against a wall! What did the child think? In 2007 Vic must have had 18 operations; developed every hospital superbug in the book; developed septicaemia, had a high output fistula; developed Acute Respiratory Distress Syndrome; spend months in ICU and survived having the ventilator turned off… Vic was op TPN (Total Parental Nutrition) for months…she had a massive open wound that we could not keep covered with a colostomy bag. It was too big and positioned very low down.
“I worry about you every second of the day baby. I worry whether you have vomited and how much you vomited; I worry whether you have been able to eat anything… I worry about your wound. I worry about your pain control….”
“Mommy, that is so sad. At least once a week the boys and I laugh so much that my tummy hurts from it…”
Vic loved unconditionally and with every fibre of her body. She gave everything! She was a wonderful daughter, mother, friend…She loved her family, her siblings, her friends and her boys. She LIVED love.
Her last words ever were “I love you Mommy”
… to win the respect of intelligent persons and the affection of children; Worldwide, intelligent people, respect and admire Vic for her courage, tenacity… We called Vic the “baby whisperer”. Children loved her. She loved children. Her only ambition as a toddler and teenager was to be a Mommy. She loved her sons beyond comprehension…
…… to earn the approbation of honest citizens and endure the betrayal of false friends; Vic suffered a lot of betrayal in her little life. People got tired of waiting for her to die. “Friends” spoke about her “addiction” to pain medication behind her back… They used her illness as a weapon against her when she was at her most vulnerable. False friends (and loved ones) spoke their “minds” and condemned and judged Vic for choices she made… Because she was ill people thought they could say what they wanted, when they wanted.
….. to appreciate beauty; to find the best in others; My precious child was so naïve. She refused to see the bad in people! The only time she got irritated and miserable was in hospital. She always found the good in people. She did not speak badly of people. When I was angry with someone she would placate me…point out their good points… She knew that if she voiced her own anger it would have driven me over the edge. Vic taught me unconditional love, forgiveness and tolerance. Vic brought out the best in me and the most other people.
…..to give of one’s self; Vic was a people pleaser. She would turn down MY bed!!!! She made sacrifices for each and every person in her life. Even in death she worried about other dying people who were less privileged than she was. I promised her 2 am one morning that I would start Stepping Stone Hospice! She kept talking to me about Stepping Stone until she lapsed into a coma.
…..to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; Vic left the world a better place. Her sons are monuments of the person she was; her dream of a Hospice has been realized.
……to have played and laughed with enthusiasm and sung with exultation; With the 2010 Soccer World Cup Vic went crazy with enthusiasm; she bought every gimmick that hit the shops; she went of the “soccer train” in her wheelchair, she watched every single soccer game.
……to know even one life has breathed easier because you have lived Vic’s legacy will live on through her sons and Stepping Stone Hospice. Long after I have died, people will continue to benefit from Vic’s dreams and goodness.
—this is to have succeeded.” My angel child – you succeeded! You succeeded in life and with living. You made the world a beautiful place filled with goodness and hope. I am so proud of you. You lived life to the full. You made a difference! You lived a greater and more successful life than most people. You have put the world to shame. You are my hero!