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.
C.S. Lewis says “Pain insists upon being attended to. God whispers to us in our pleasures, speaks in our consciences, but shouts in our pains. It is his megaphone to rouse a deaf world.”
For 37 years I have bargained with God. He alone knows of all my anguish, tears, pleading, my fears and pain. I am strong. I don’t cry easily or often. I have cried before God. Pleaded with Him for mercy.
He chose to ignore my pleas for mercy.
I have not been to Church in more than two years. I attended Marlene and then my Dad’s funeral. I went to one service at Reuben church. I have been angry with God….. Disappointed that the God of Mercy I learnt about from my parents’ knees does not exist. I have only experienced a God who has sentenced my child, and now my grandson, to a life of pain and suffering.
Today I attended the annual church fete. The arms that I have missed for more than 2 years enveloped me. Kisses rained on my cheeks. “I have missed you”, “We still pray for you and Vicky everyday of our lives”….. “It is so good to see you!”
The minister, Martin, hugged me and said “I think of you every day. We are always here for you….
I cried. I miss my church friends but I cannot go back for the wrong reasons.
I wondered tonight why the friendships did not last outside the confines of the church? I realized that our pain is too much for people to cope with. They hurt for me…..
But in the silence in our everyday lives is deafening…God’s megaphone has obviously not roused the deaf in our world…….
For the past couple of days JD has not eaten well and lost control over her bowels a couple of times. This morning she looked at me with her beautiful, soulful brown eyes and whimpered….
A couple of times we have had her paloured for her final journey and then my courage forsook me. I kept finding excuses why she should not go for an injection. Her cough was better, “she has a sparkle in her eye”,” she “bounced” around her snack”…. Yesterday I gave her some of her all time favorite treats i.e. dried sausage (droëwors) and she did not touch it!
Last night she sat upright – I think it was too difficult to breathe. JD had congenital heart failure.
Today Danie came home from a business appointment and I said “It is time”. He knew exactly what I was saying. Vic came through and sat on the carpet with JD. She said goodbye. I picked JD up and walked to the car. Danie drove.
We took JD to our local SPCA. A young, sympathetic, female veterinarian asked me if I wanted to leave. I said “No.” She battled to find a vein. “It’s the congenital heart failure” she said.
“She is almost 16 years old” I said.
“Wow, she is really very old. She is a pretty little dog” she said
“Have you ever had a dog euthanized?” she asked
“No” I said
“I will inject an anesthetic into her veins and she will fall asleep. She may have a muscle contraction or a bowel movement. It will be unpleasant for you but not for JD. She would have passed on.”
“Okay” I said
She found a vein and JD slipped away whilst my tears fell on her coat.
At 12:05 on the 24th of August 2012 JD went to Doggie Heaven.
When Tony Nicklinson’s legal team visited him two days after the high court decision, he communicated via computer by moving his eyes “So, we lost. In truth I am crestfallen, totally devastated and very frightened. I fear for the future and the misery it is bound to bring.
“I suppose it was wrong of me to invest so much hope and expectation into the judgment but I really believed in the veracity of the arguments and quite simply could not understand how anybody could disagree with the logic. I guess I forgot the emotional component.”
Today at 10:00 Tony Nichlinson died surrounded by his loved ones. His family said he simply gave up….. This supports my theory that death is actually a conscious decision. I have seen Vic turn back from death. It is not anything physical but in that second something changes! We all know of someone who has “held on” until a loved one walked in whilst others wait until their loved ones have left the room before they die. I have personally experienced this with my mom when she passed.
First, published studies have shown that people who undergo cardiac arrest can recall specific memories and demonstrate consciousness. Second, during cardiac arrest, there is no measurable brain activity. “If you combine these two sets of data together, it indicates a need to do a large study to determine: is this real or not? Can this really be going on?”
Still, the explanation behind these events can be attributed to the complexity of the human mind, not, as some believe, a universal spiritual experience, or even a new realm of science.
“When you study mind and brain, you see that, although in many circumstances this practical model we have developed — mind and brain are the same thing — is fine, when you go to an extreme environment like during a cardiac arrest…they don’t seem to apply anymore,” says Parnia. “It may suggest that there’s something that hasn’t been discovered scientifically.”
Studies by Parnia and other researchers show that between 10 and 20 percent of who are resuscitated from cardiac arrest had a near-death experience (NDE). Various other studies show the frequency of near-death experience to be between 4 and 18 percent. The experience is typically described as a progression of stages. First, the person has a sense of peace, then a sense of separation from the body. The person then enters into darkness, and sees a bright light like the end of a tunnel. Finally, the person enters the light and interacts with an entity, described as God, Allah, or simply a universal cosmic force.
The art of dying is the art of letting go. Our fear of death and letting go keeps us in fear of uncertainty and change, which are a natural part of life. Out of these fears we hold on to old beliefs which make us live in fear, misery and the idea of separation. Our fear of death is deeply repressed and usually unconscious. We are filled with fear and trepidation when a beloved dies, is terminally ill, or when we ourselves are challenged with illness, old age or a life threatening situation.
I am grateful that Tony Nicklinson’s suffering and misery has ended. He is at peace and I believe now truly lives in a healed body His suffering is over. I thank God for His Mercy.
When you have a frozen abdomen from having 80+ abdominal surgeries, have a septic abdomen and septic prosthesis in your spine, suffer from Addison’s Disease and spend 24/7 in pain your world becomes very small. You also become well travelled as you have been to hell and back! Life gravitates around pain medication, more pain medication and hopefully some blissful sleep. Friends come and go. Spouses come and go. In an uncertain life it is a certainty that everybody eventually leaves.
So for the few of us that choose to stay around it is important to be sensitive to the emotions of the terminally ill person. Allow me to personalize this… It is important for us as a family to be sensitive to Vic’s feelings of abandonment.
Countless times a day Vic will say “Thank you Mommy for…….” “Thank you for looking after me”; “thank you for not leaving me”; “thank you for loving me” …… A child should never ever have to say that!
An adult child should rebel against the constraints of her parents rules and discipline and leave home. She leaves the safety of the home and comes back for Sunday lunches, to drop off laundry and bring a new love around to meet The Parents… Eventually the child will venture down the aisle, fall pregnant, christen her children, start running a car pool…. the list carries on and on. Eventually in large parts of the world the aged parents may move in with the now mature children and eventually die. I got married, left home, had Vic, got divorced, bought a new house, started my own business, remarried and eventually my Dad came to live with us for 18 months until he forgot how to breathe. Not once in my adult life did I ever consider moving back home to my parents. As an adult, wife and mother I often longed for the safety of my childhood home. I long for just ONE day in my life without responsibilities. I long to be a child again – carefree and cherished…. I miss my mom and wish I had her support and advice to get us through this difficult journey.
My sister and I discussed the way our lives had turned out. She has had an extremely challenging life and I seem to go from one crisis to another. We decided that we used up all our good luck and happiness as children…. I want to be a child again!
As usual I digress.
Vic is emotionally fragile. She fears that the remaining few people will also get tired of her ill health and pained life and abandon her. She fears that the boys will abandon her and look to us, the grandparents, for parenting. She fears losing the only “position” in life that she has left – the position of “Mother”. It has been very difficult to sacrifice her independence and move home. She has gone from being a wife to being a child. She has gone from being the mother to being mothered. I am a typical parent. I want to protect my little baby…. I want to do everything for her. I want to wrap her up in cotton wool and keep her resting in her bed. Maybe if she takes things easy it will buy us some extra time… If she is in bed her chances of injury is less.
Every day of her life countless indignities are heaped upon her. She is dependant for everything from medication, care, food and money. Poor poppet! Death is always in the foreground of her mind. Either fear of dying and at times fear of not dying.
I don’t really know what I set out to articulate in this blog but writing has once again reminded me what a pitiful life Vic has. My poor, poor little baby! No-one in the world deserves her life! But we will never abandon her – ever!
I just finished watching a program called “How to Die in Oregon“. I am in total awe of the terminally ill people who make the decision to die with dignity. People often say that it is a coward who commits suicide. I don’t agree. I think people must be so brave to do it!!
There is however a huge difference between suicide, assisted suicide and euthanasia.
Assisted suicide is the common term for actions by which an individual helps another person voluntarily bring about his or her own death. “Assistance” may mean providing one with the means (drugs or equipment) to end one’s own life, but may extend to other actions. It differs to euthanasia where another person ends the life. The current waves of global public debate have been ongoing for decades, centering on legal, religious, and moral conceptions of “suicide” and a personal “right to death“. Legally speaking, the practice may be legal, illegal, or undecided depending on the culture or jurisdiction
The TV documentary, “How to Die in Oregon” is the tender and poignant story of Cody Curtis, a 54 year old, dignified, lady, who is diagnosed with terminal liver cancer. Cody, early in her final journey decides that pain strips one from the ability to make rational decisions. She decides that she will not suffer the indignity of living with loss of control of her bodily functions. She desires a “tidy death”. Her journey takes her way past her “expiry date” and she muses “People are waiting for me to die. I do not understand why I am feeling so good”.
Her decline into intolerable pain and discomfort is sudden. “Compassion and Choices” sends in volunteers to counsel and assist with the final act of assisted suicide. Cody’s final journey is gentle, beautiful and “easy”.
Every time I say those terrible words “Vic is better” it is as if I place a curse on my poor child. Poor Vic did not have a good day today. Isn’t it amazing that 400mg of Morphine does not help for a headache! It actually takes something like Grandpa’s or a Migraine Kit to help….
Vic and I sat chatting tonight. She too had watched “How to Die in Oregon” and wanted to know how I would feel if she ever took a similar decision. She cried and said that she is so sad and lonely. She feels that the boys no longer trust her to “mother” them.
It is not the case. What the boys have however started doing is setting her free….
How would I feel? I would be devastated if Vic ever passed before I do. I would miss her every second of my remaining life. I would respect her wishes. I would honor her memory and heart wrenching decision.
Nobody can begin to comprehend the pain that Vic suffers. Nobody can comprehend that she drifts from one pain filled day to the next. If she lived an extra month or two months it would be another month or two months of pain. That is a lot of pain.
I know that this post will elicit a lot of condemnation and criticism. When you have walked just ONE mile in our moccasins you may speak….
Did God intend for man or woman to “live” connected to machines to keep them breathing? People accept the death of a six-year-old child by aerial bombardment or economic sanctions and defend the life of a six-week-old fetus. I personally live in a country where children still die from inadequate medical care and hunger.
After Vic’s Dad spent a week in ICU, ventilated and bleeding from his eyes, she signed the documents to allow the doctors to turn off the ventilator. Tienie was an organ donor. We were allowed to say our goodbyes and then the transplant team swept in. Sometime later the machines were switched off and Tienie was officially declared dead…..
Tienie lived life to the full. He believed sleep was a waste of time. He never sat still for a single minute. He loved life! He had a brilliant mind. He was articulate and well educated. He was a very proud man. If Tienie had lived he would have been condemned to “Locked-In Syndrome“. I remember standing next to his hospital bed thinking “What if that brilliant mind is trapped in a body that cannot communicate?”
Vic received a couple of letters from grateful recipients telling her what a difference Tienie’s organ’s had made to their lives.
On numerous occasions Vic has been on life support. We have been told to say our goodbyes. We said our goodbyes. Vic started breathing on her own…
Across the world people have prayed for Vicky’s life to be spared/saved. I have seen medical teams fight for her life refusing to let her slip into the arms of death. The bottom line is that doctors have played God in her life for many, many years. They decided when she was NOT allowed to die…
Doctors proclaim they do not want to play God…..They will fight day and night, for weeks on end, to save a very sick person’s life regardless of the individual’s wishes and quality of live. Doctors and Governments assume the right to decide when a sick person may die. God surely did not intend people to live a miserable life… Just yesterday Britain’s High Court rejected an attempt by a man who has locked-in syndrome to overturn the country’s euthanasia law by refusing to legally allow doctors to end his life.
Tony Nicklinson had a stroke in 2005 that left him unable to speak or move below his neck. He requires constant care and communicates mostly by blinking, although his mind has remained unaffected and his condition is not terminal. Locked-in syndrome is a rare neurological disorder where patients are completely paralyzed, and only able to blink. Patients are conscious and don’t have any intellectual problems, but they are unable to speak or move……
“The suicide, the mystic, the woman who seeks an abortion, the cancer patient who smokes a joint (the cancer patient’s long-suffering lover who smokes a joint)—all are roundly condemned for their escape from “responsibility” but truly feared for their escape from jurisdiction. It is a fear with a long and traceable history. The Roman emperor Tarquin crucified the bodies of citizens who committed suicide in order to escape his tyranny. When Margaret Sanger began her campaign for birth control, she was accused of permitting women to escape their God-ordained sorrow in bearing children.” http://harpers.org/archive/2005/02/0080411
We live in a world filled with hypocrites and people with double standards. I have said it before – people take the moral high ground and assume the role of God. Did God intend for man or woman to “live” connected to machines to keep them breathing? People accept the death of a six-year-old child by aerial bombardment or economic sanctions and defend the life of a six-week-old fetus. I personally live in a country where children still die from inadequate medical care and hunger.
It is not physician-assisted suicide that poses the greatest threat to the poor and the disabled but physician-assisted eternal life: Rich people will pay a lot of money for illegally harvested organs… The poor, from a different continent, will sell their organs to buy seed for their farms….
The World Trade Centre – did the jumpers commit suicide or were they murdered? According to most religions the jumpers will go to hell because they took a life – albeit their own…. How stupid!!!!
It is my personal opinion that Tony Nicklinson has been sentenced to a Life of Disability rather than being allowed “Death with Dignity.” He cannot wipe his own nose, wipe a tear from his eyes, scratch his ear….. He cannot control his bodily functions. He cannot even take a lethal dose of medication.
I pray that God will have mercy on me and allow me the time, mobility and clarity of mind to end my life rather than live the indignity and miserable life that Tony Nicklinson has been condemned too.
Today was a terrible day. The pain Clinic was crazy! I have never seen so many people waiting to see the Professor.
When you are sitting in a queue for hours with people you meet every 28 days, you get to know the fellow patients. But today there were two new faces. An attractive young woman and her tired looking mother. They appeared to not be very cultured or refined people. The young woman was the sister of a patient who, like Vic, is too ill to come to the Pain Clinic. His sister (S) and mother (M) are his proxy’s.
S became very agitated because she was told – “no appointment, no consultation, no prescription”. She actually used some choice language! She kept saying “It is not for me. I actually don’t care….”
She however bullied the nurse into agreeing to allow the unscheduled appointment. But it was a long wait and S, I suspect, is a little ADD. She was babbling about her brother and his pain and the sacrifices that the family had made after the brother’s motorbike accident. At one stage of the monologue she said “Sometimes I just think I must give him some poison….”
Holy Moses!! It flashed through my mind “What type of person is this?”….
I was intrigued by the personality so I started chatting to her. All it took was one or two questions and a flood of emotions and words poured out of them. Sitting there I realized that I blog and that is what she was doing… S was blogging…..verbally.
She started telling their sad story. Brother had been involved in a motorbike accident and spent weeks in ICU, ventilated and suffering some brain damage, severe nerve damage and lots of fractures. He spent many months in hospital and gangrene developed in his leg. His leg was amputated but the gangrene spread and this lead to 3 further amputations! The mother said if she had known how he was going to suffer she would have prayed for him to die.
A small percentage of amputees suffer from phantom pain. “Although the limb is no longer there, the nerve endings at the site of the amputation continue to send pain signals to the brain that make the brain think the limb is still there. Sometimes, the brain memory of pain is retained and is interpreted as pain regardless of signals from injured nerves.” http://www.webmd.com/pain-management/guide/phantom-limb-pain. Brother apparently squarely falls into this category.
Sister loudly proclaimed, for the world to hear, that she sometimes considers giving her brother enough morphine to end his misery. She believes that he is hanging onto life until his insurance claim pays out so he has something to leave his children…
The mother is taking care of her son. It is obvious that her life has come to an end. I see the despair in her eyes when she says “He doesn’t sleep. Yesterday he threw his crutch at me…..”
Sister then whispers, in a conspiratorial manner, “We buy him lots of extra medication”
I asked them whether they had ever considered giving him cannabis. “Oh yes” they said. “We made him tea and he hated it!”
“It is better if he smokes it” I said
I looked around and saw shock and surprise register on everyone’s faces. I could see them think “How can this (sweet) middle aged, conservative, Afrikaans speaking lady even know about cannabis?”
Well, I do know about cannabis. I have researched every single aspect and possible pain management method and product and my research includes the effect of cannabis on pain relief.
Marijuana helped reduce pain in people suffering spinal cord injury and other conditions. In this study, 38 patients smoked either high-dose or low-dose marijuana; 32 finished all three sessions. Both doses reduced neuropathic pain from different causes. Results appear in the Journal of Pain.
A couple of years ago I bought some cannabis and put it in brownies for Vic to eat. She hated it. I gave her some to smoke. She hated the effect that it had on her. I know it is illegal. Personally I have never smoked or eaten the stuff so I do not know what effect it has on people. I have read, in 100’s of publications that it reduces the pain perception and can stop the devastation of Alzheimer’s.
I will stop at absolutely nothing to relieve my childs pain.
I then had a light-bulb moment – I realized that the mother and daughter were no different to me. They know the heart wrenching despair of caring for a loved one who has indescribable pain. They too pray for their loved one to find peace and release in death. They will also do anything to relieve the pain of their loved one.
This morning, when I checked the BBM status’ of my loved ones, Jared had the lyrics to Linkin Park‘s “Skin to Bone” as his status. I did not realize that it was a song’s lyrics and wondered about the weird status. Normally his status says something like “I love my beautiful Jelly Tot” or “Kirsten, my one and only”
After school, while we were waiting for Jon-Daniel to finish cricket practice, he asked me whether I had heard the song, “Skin to Bone”, before. Obviously I hadn’t but even if I had, I doubt if I would have been able to distinguish the words from the loud musical arrangement….I am not the greatest Linkin Park fan in the world!
He spoke about the lyrics and I asked him whether the song reminded him of his Mom. He said “I suppose so. When I first heard the words I thought of Mom”
“Skin to bone“, represents her frail body to him. “Steel to steel” her steely hold on life! Her refusal to give up. “Ashes to ash, dust to dust”….. the inevitable
“The promises we made” I would imagine the promise that he envisages is the unspoken promise that a parent makes at the conception of the child….. to love and hold the child – until death do them part… The promise is not supposed to end in his early teens.
“Your deception, my disgust…..” relates to his feelings of betrayal. In a way he perceives his Mom’s ill health as a betrayal. His Mom is not supposed to be this ill and suffer the way she does. Vic was supposed to be a healthy Mom. Their lives were supposed to be “normal.” “My disgust” …. the despair of his life…..Anger for his mother’s suffering! Disgust with the medical system failing her. Anger for the OI gene. He is unable to understand all the “why’s”.
“When your name is finally drawn,I’ll be happy that you’re goneAsh to ashes, dust to dust.”
Jared absolutely adores his mother. He often says “Oumie, I don’t want Mommy to die.” I have however seen the sheer helplessness in his eyes when he sees her suffering the way she does. I know that Jared too longs for his mother to be at peace, without pain – Her spirit freed from her frail, pain wretched body. So my precious grandson joins the song and broken hearted sings along with Linkin Park
“I’ll be happy that you’re gone. Ash to ashes, dust to dust….”
C.S. Lewis says “Pain insists upon being attended to. God whispers to us in our pleasures, speaks in our consciences, but shouts in our pains. It is his megaphone to rouse a deaf world.”
Vic's Final Journey 
