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 have not posted in a long time. I keep thinking up posts but I never seem to have writing time. I do dream of having time to write my book. No, let me rather rearticulate that…I dream of having time to attempt writing a book that will capture the pain and indignity that my little girl suffered. The book must portray the immeasurable value of her legacy. It is not only a huge responsibility and project but the fulfillment of the deathbed promise I made.
On Saturday I spoke, at a fundraiser, about the story behind the starting of Stepping Stone Hospice. I was given 20 minutes but I think I took much longer. I wanted people to meet Vicky. The “healthy”, carefree child/woman with a heart full of hope. I wanted people to see how during the last 10 years of her life she was stripped of so much.
And, when she realized that there was no more hope to feed on…
I did not have the time to talk about the bedsores that developed the last day, the fact that I did not know I had to turn her every two hours… I wanted people to understand the helplessness her boys felt seeing their mother in so much relentless pain. The trauma they experienced seeing Vic live through the pain, the indignity of the disease, her quiet resolve of accepting “it was over”.
It felt almost “clinical”.
How do I begin to share the horror of my child’s journey? My horror of seeing her being wrapped in a plastic sheet… the horror of knowing that we lost the battle? The “now” nightmare of being able to sleep and wake up in tears because I miss her so much…
For so many years I did not sleep because I was scared I would not hear her. Physically and mentally I was exhausted. Now…I do sleep but my soul is tired.
I must capture the heartlessness of the medical profession; the lack of counseling; the importance of hope… I must capture the bravery of a tiny little girl fighting for just one more day – one day at a time.
But most importantly I must fight to keep Vic’s legacy alive. I have to make a difference so that, in Vic’s words, “no one will suffer like I did.”
Today I read the post of a very dear blogger friend. She is an unbelievably strong and resilient woman who is dying from congenital heart failure. She is a medical professional who served her country bravely. Sandra is married to an amazing man, and she loves his children dearly. They are a great source of joy to her.
I have just re-read most of Sandra’s old posts. It filled me with sadness reading her brave posts, an almost intellectual outlook on death… My friend is not a stranger to death. As a medical professional she encountered death often. Death in every form, indiscriminate of age, colour or creed.
Sandra posted : how to die? I have watched many die over the years and the range is as you would imagine. there were those that just could not let go and suffered every indignity to their body and soul. of course others went quietly with love around them. I have not decided if I want to be alone or with loved ones by my side. is there a way to make it easier for them? would they rather receive a phone call with the news or be at bedside? either way it will hurt them, not me of course as I am the one leaving. I would be lying if I said I don’t think of how I will miss so much. the thing is I have had so much, so much more than others and it seems selfish to complain. what they will go through is tremendous compared to what I will go through. I will sleep eternally and they will live. the best I can hope for them is peace of mind and future happiness. I want them to think of me and smile as I do now thinking of them. http://thedrsays.org/2011/03/25/
When I read this post I recognised the same almost detached approach to death that Vic had…As emotionally intelligent people Vic and Sandra look at death and know that their loved ones are the ones who will suffer the loss. Vic so often expressed her concern for her loved ones who would be left behind. My friend does the same in her posts…
I believe and hope that I will die with dignity,
we are not born with fear and so we can die without fear. I think a lot of us are not so much afraid of dying as we are of not being remembered. it is only human to hope that our kids will have some fond memory, our grandkids, friends and maybe even some people who just passed through on the way to somewhere else. I would like to think there will be some fond memories of me. Chris is going to have a memorial at our home (I think) for me. I have asked for a celebration of my life. remember me as I am a real person with some good some bad and some … that should maybe stay in the vault:)
Today she posted: “for tonight i am not going to lie to you. i feel death coming closer, i hear the bear growl. at times i think i may see her but then she moves a little and we continue down this path. the toxins are working their way through my body to the skin where they are sores that itch and bleed. i have these toxins because my liver and kidneys are not working the way they should. my liver is enlarged and causes great pain. it is like having the worst charlie horse you have ever experienced just under your ribcage on the right side of your body. of course the spleen takes up its chorus on the left side and the kidneys can be felt in more places than you think and may be different in different people. i am so weak at times that just standing takes a monumental effort. my arms and legs can turn to shaking jello. sometimes my eyes won’t focus and my mind is hard to clear. forget about reading or even looking at the temp control on the wall.” http://thedrsays.org/2013/04/29/sex-lies-and-videotapes/
I am re-living Vic’s final journey with this precious, brave woman.
The purpose of my post is to thank Sandra for her friendship, support, guidance, compassion and advice over the past year. Often when I vented about Vic being stubborn or ill Sandra would gently advise me from a terminally ill person’s point of view. She opened my eyes to so much of my child’s emotions and personal struggle… She knows because it is her journey too.
My friend is a medical professional and KNOWS what is happening in her body. Vic knew too…
In November 2012 Vic started saying that death was close…she would not bounce back this time…and now my friend says “I feel death coming closer…”
Oh my friend what can I say? I know the emotional agony that Vic went through when she was where you are now. I wish I could give you some of my health. I wish I could wave a magic wand, and you would have more time. We both know I cannot do any of this.
Please know I hold you in my heart. I am sad that your journey is almost over. I am so sad for the dreadful pain you are in. I hope you are having pro-active symptom control.
I want to thank you today whilst you are strong enough to hear my words. Thank you for your friendship, compassion and support over the past couple of months.
I think you are incredibly brave, and you remind me of Vic…Stubborn, compassionate, intelligent…amazing! I hope that you will meet her when it is your time to cross over. Please know that I treasure you as a dear friend.
I pray for a miracle, that you will have lots of time, pain-free days. Know that you are loved and admired. I wish we had met.
I am not saying goodbye – just thank you for being a wonderful friend
To all my blogger friends out there – please pray for Sandra and Chris….
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.