It happened when I was in my car on my way home from walking Gabe (our dog).
He simply said “you have always lived in the palm of My hand, why would this be any different?”
It was the answer to a question that I had been pestering God about for weeks. Even before I got my diagnosis, I knew in my soul what was happening to me. I also knew exactly what the journey would look like and it’s not a pretty picture.
I will forget my own history and will begin to forget those I love, my relationship to them and all our shared stories. I will be unable to look after myself, I will need help dressing and walking short distances. I will then lose the ability to speak or interact in any meaningful way with those I love. It’s possible that I will have hallucinations that will be very real for me and confusing for those around me. I will become incontinent and eventually I will not be able to sit up on my own and will require 24-hour care. One of the most common causes of death for people with dementia is pneumonia caused by an infection.
Given all of that the question I had been pestering God about was this. Would it be OK if I just take myself out of the equation while I am still aware enough to do that? In essence I was asking God if it would be OK if I killed myself.
On this particular day I was determined to get this sorted out and so I mentally beat on Gods door demanding an answer. His answer came in the words above and with the following two stories.
The first is that I used to work with a lovely lady who has Huntington's in her family. They were visiting her mother-in-law last year and a nurse popped in mid visit. She said to my friend and her husband that the patient loved it when they visited. They both said the right thing and nodded but did not believe the nurse. She was able to sense that and then asked questions of the patient in a way that she could respond and it turns out she really did know who they were and she did in fact love their visits. They both left the hospital in tears and were thrilled to find out their Mum was still in there after all. I think most of the family believed their loved one had “left the building” some time ago.
The other picture that flashed on my mental video tape was something I read in a book probably 30 years ago. The book is The Hiding Place by Corrie Teen Boon. Long story short her family hid Jews during the war, the family were eventually arrested and sent to Ravensbrook concentration camp. She survived the camp due to a typing error. She was supposed to be on a list for the gas chamber but instead she was incorrectly added to the list of those who could still work i.e. the living list.
Later in her life Corrie had a number of strokes and was bedridden until her death. Those who looked after Corrie all agreed that they were not the only people in her room. They all felt certain that they were sharing the space with angels who were busy nursing Corrie’s spirit and soul while those around her nursed her body. I loved that picture when I read it and now here it was taken from the filing cabinet in my mind and placed before me.
So, I am on the road asking if it’s OK for me to go and His reply was “you have always lived in the palm of My hand, why would this be any different?”
He showed me with the first story that just because we think people have “left the building” mentally - we can be wrong.
The second story told me that God already has a plan for my final days on earth and it involves angels. The idea that angels would be beside me until the end fills me with awe and wonder and all the fear and anxiety, I had about my future melted away.
The final thought I received in that car was that there is something I need to learn from this journey but only if I am open enough.
My response was floods of tears, I had to pull the car over in order to have a good old cry complete with snot and of course there was not a tissue to be found anywhere in the car. I did eventually find a napkin which took care of my face and then I just said aloud “yes”.
It’s a yes to the journey, it’s a yes to learning whatever I need to, it’s a yes to allowing God to be in control of it all, even the hard stuff. It’s a yes to surrendering my will for His. It was all just one great big YES.
I wanted to share this story with you because it fundamentally changed the way I am thinking about the rest of my life. I started this blog the next day and this should have been my first post but I wanted to sit with it for a while before sharing it further afield.
Here is something I know for sure – I know that this is part of Gods plan even if that sounds insane to you. Do I think God made me sick, hell no; but I do believe He uses situations like these to show us His endless and amazing grace.
I want to make this really clear upfront I downloaded the bookGlimpsing HeavenbyJudy Bachrachabout two years ago which is well before I noticed decline in myself.
I am one of those people who has always been fascinated in near death experiences and I am frankly amazed at those who are not. We areallgoing to die, don’t you want to know if anything happens next?
Anyway, this book finally popped up as the next book for me to read and I thought OK this is a weird coincidence … or not. I lean on the not side, Gods timing is awesome.
It begins with the author Judy who volunteers at a local hospice because as she puts it – she is terrified of dying. She also makes it quite clear in the first chapter that she is not a woman of faith. I actually found that I prefered that - she is not filling in the gaps with her own ideas and beliefs.
She wanted to interview those who claimed to have had these experiences but she also insisted on talking to the loved ones of these traveler’s. She then interviewed their clinicians so that she could document her findings in a scientific way. She is an investigative journalist and that becomes crystal clear in her writing. She goes in a non-believer and explains that she will need her research subjects to prove themselves before she will be swayed.
(Spoiler alert) At the end of the book she admits that she is now a believer – not of God but of believing whole heartedly that those she interviewed reallydidgo somewhere else. She is no longer afraid of death and believes that she will see her loved ones who have passed when it comes her day to travel.
What I found fascinating is that because we have defibrillators available in most work places, sports arenas etc. as well as better health care in general the number of these death travelers has now reached hundreds of thousands. They hold conventions all over the world where they share stories with other fellow traveler’s e.g.Conference — Real Near Death Experience Stories - NDE
However very few of them tell their closest loved ones about their experiences because they know they will be labelled as delusional.
Some doctors refused to talk with the author because they could lose research grants as a result. Others were burning to tell her their side of the story. Many of those surgeons simply could not explain how their patients were able to describe to them in intricate detail discussions held during surgery or the music they were listening to while operating. Their patients had their eyes taped shut and wore devices in their ears to completely block out noise both of which are commonly used in theatres all around the world.
They cannot explain it and so most of them shrug it off and move on, a small handful of doctors have been so affected by patients’ stories that they have made this their area of expertise but it comes at a cost. Again, these doctors are often written off as kooks by their peers.
One of these doctors is Raymond Moody who is an Americanphilosopher,psychiatrist,physicianand author, most widely known for his books aboutafterlifeandnear-death experiences(NDE), a term that he coined in 1975 in his best-selling bookLife After Life. His research purports to explore what happens when a person dies.He has widely published his views on what he terms near-death-experience psychology.His Facebook page is found atDr. Raymond A. Moody | Facebookif you are interested.
Judy chose to call her subjects “death travellers” because as one Doctor put it – this patient wasn’tneardeath she wasdead, deadand had been for over an hour. Again, modern medicine can bring people back to life even when they have been gone for quite some time especially if they are found in near freezing conditions.
I was also stunned by this statistic – over 65% of people who have a death experience end up getting divorced shortly after they return. This is because in most cases their loved one came back … but they came back permanentlychanged.
Some immediately resigned their high-powered jobs and instead chose to take a pay cut to take on roles that involved helping others. Some came back with what could only be described as “abilities”. They were able to sense other people’s feelings and in the case of one woman their thoughts. One man became a monk who now helps other travellers document their experiences.
Another man came back and found that he needed to play the piano. He was not musically inclined but he began lessons almost immediately. He went on to create a piece of music which he named “the lightening sonata” because he had died from a bolt of lightning which travelled down a telephone he was using in a thunder storm. The person behind him in the queue to use the phone was a nurse. She was able to bring him back via CPR. The list goes on and on.
So that is the gist of the book and it was a great read. There was one story that caught my attention and I thought I would share it with you.
There are so many of these experiences where they all mention similar phenomenon –"the light"is the most common of them all. Its described differently by each person but in one case the traveler is a young mom of two who sees her grandmother inside “the light”
It reads -I asked my grandmother if the light was God. She laughed at the suggestion and said - Oh no baby, God is not the light. The light is what happens when God breaths. She knew then that she was standing in the breath of God.
I adore that mental image and its going to stay in my brain for as long as I can hold onto it. I want to stand in the breath of God please. Sign me up now!
Below is a summary of the book in case you are interested.
Glimpsing Heaven by Judy Bachrach
If you caught a glimpse of heaven, would you choose to come back to life? Investigative journalist Judy Bachrach has collected accounts of those who died and then returned to life with lucid, vivid memories of what occurred while they were dead, and the conclusions are astonishing.
Clinical death--the moment when the heart stops beating and brain stem activity ceases is not necessarily the end of consciousness, as a number of doctors are now beginning to concede.
Hundreds of thousands of fascinating post-death experiences have been documented, and for many who have died and returned, life is forever changed. These days, an increasing number of scientific researchers are turning their studies to people who have experienced what the author calls death travels - putting stock and credence in the sights, encounters, and exciting experiences reported by those who return from the dead.
Through interviews with scores of these "death travellers," and with physicians, nurses, and scientists unravelling the mysteries of the afterlife, Bachrach redefines the meaning of both life and death. Glimpsing Heaven reveals both the uncertainty and the surprising joys of life after death.
When it comes to the genes that have made me who I am – I got a really bad bunch.
I have a very rare condition called MUTYH (MYH)-associated polyposis (MAP) which is a hereditary condition that affects 0.7% of the world’s population. In order to get this condition, I needed to get a bum gene from both parents (hence why it’s rare). People with MAP tend to develop multiple adenomatous colon polyps during their lifetime. They require a full colectomy in order to survive this condition.
I had a colectomy in 2013 and when they opened me up, they realised that my polyps were actually on the outside of my colon which was a first for my surgeon. The 3–4-hour operation ended up taking 9 hours because they needed to painstakingly check every inch of the colon and of my stomach to remove any rogue polyps.
I was able to keep a tiny bit of my colon that connects with my bowel so I do not have a colectomy bag but I have yearly procedures to check there are no polyps on that small section. Since the original operation I have had six removed.
My blood group is O- which only 7% of the world’s population share with me. It’s the universal blood group so I can save everyone else but when we need large amounts of blood, we have to find a buddy who is willing to swap with us. I always remember the surgeon who did my colectomy saying that getting any extra blood for me would be “tricky” if I had a bad bleed during the operation. That was the last thing I thought of when they put me under.
I have aortic regurgitation which affects 8.5% of the world’s population. It’s thought that I contracted this via rheumatic fever when I was a child. It allows some of the blood that was pumped out of the left ventricle of the heart to leak back in. As the left ventricle works harder to keep pushing blood through the aortic valve, it may eventually enlarge and weaken. A weakened left ventricle may lead to heart failure.
I have regular check-ups with a cardiologist and at some point, I would have needed surgery to replace the valve with a mechanical one. I have chosen not to go along with that procedure if it becomes necessary, heart failure would be so much kinder than dying of early onset Alzheimer’s.
And finally, as you know I have early onset Alzheimer’s which affects less than 10% of the world’s population.
I like to think that when God made me, he wanted to make me SPECIAL!
I adore science fiction - it started with Star Wars and then later with the original Star Trek which I used to watch on Saturday mornings in my first flat. When I was in the midst of depression Star Trek Voyager helped me find a place of peace even if it was just for forty minutes. I loved how orderly things were, space looked like a great place to be. No matter what happened all things were set right at the end of the show.
What I love about God is that he is the ultimate sci fi character - He is not from earth which makes him an alien. I’m not being disrespectful; it’s just how I personally see it.
My absolute favourite kind of sci fi is anything with time travel. I am always taken with the idea of going back in time and fixing things or going ahead in time to learn what comes next and if need be fix it.
A favourite sci fi movie of mine isArrivalbecause it deals with time, memory and the way we as humans are trapped by rules around both. When it comes down it who we are at our core is attached to our memories. We remember special moments in life, we also remember tragedies with perfect clarity.
I’ve begun to forget details already and I know that as my brain shrinks, I will forget more and more. I want to believe that who I am will stay in some way but I have no guarantees about that. Greg, my family and friends will need to hold onto my memories for me and that gives me comfort, they are in safe hands.
This week’s memory loss included how to spell Featherston - I’m OK with that because it’s not really that important. However, I don’t want to forget my mums face, Gabe’s name and any of my shared memories with Greg.
Dementia literally shrinks the brain; it’s how the PET scan was able to diagnose me. It starts with your most recent short-term memories and spreads from there. This is why dementia patients retreat back in time to their childhood, as they are our longest memories and so they are the last to be erased.
I like to believe that even when I do forget the details of my life, I will still know somewhere deep inside me that Greg is myperson. He is the one person on the planet who adores me no matter what (family does not count, they are contractually obligated to love you). I put on 20kg due to menopause, I have now taken that weight off over the past year. I’d love to tell you that it’s not related to dementia but it is.
We were with some friends and one of them said “you look so much better with the weight off” and Greg piped up and said that I have always been beautiful regardless of my size. That’s one example of why he is my person and always will be.He treasures my heart and soul above what I look like externally.
Regardless of what is to come I know that the best decision I ever made was to choose the man who is lying next to me in bed while I type away.
I don’t want to forget that.
I have always loved miniature things – literally anything tiny is in my wheelhouse. I remember that on my 40thbirthday all my presents fitted onto the dinner plate in front of me. I looked at the tiny bright packages before me and knew I would love them all based on their size alone.
I have three printers’ trays which are full of tiny things and when I walk into the op shop I immediately go searching in the cabinets for anything small I might want to take home.
I met my paternal grandmother for the first time when I was in my early twenties and as she took me around her house I realised that she also adored small objects. My dad had a strained relationship with his mum and so I knew almost nothing about her until that trip. I find things like that fascinating – is there a “tiny” gene that can be passed along?
I was dubbed “tiny” when I was a little girl by the whole family because I took ballet lessons which I adored and also partly because it was a new song on the radio by Elton John – tiny dancer.
I remember that at our end of year concert I was given the role of the “bumble bee” and the rest of the girls played pretty bright flowers. I really wanted to be a flower and thought I hadn’t been given that role because I was not pretty or graceful enough.
I look back now and realise they gave me a leading role which I should have been thrilled with but we make up stories in our own minds don’t we?
The other story from that concert is that one of the girls next to me got stage fright and was kind of rooted to the spot. According to the family members in the audience I poked her hard so that she would move. Its fair to say that I was not going to be a professional ballet dancer! I did however date a professional ballet dancer in my twenties who I loved very much.
My first dog was named Gracie and she weighed in at a whopping 2kg. She was perfect for the lady who adored little things. I would literally put her in my hand bag without anyone noticing she was there. I got in taxis, went to the movies and took her to church.
I am planning on being housed in the section of heaven where the very small things live. I am presuming that is a thing because I know I am not alone in my love of small objects.
So how do I manage day to day stuff? Let me introduce you to the best friend of those with dementia - post it notes. I have them dotted around the house as well as a notebook and pen. When I think of something I want to do, or need to remember I write it down immediately.
Having said that I just went through a notebook with some of my notes and two of them made no sense at all. I am still surprised that one Rachel knew what those words meant and the other has no idea!
My iPhone is invaluable to me, it tells me the day of the week, (I gave up on dates a while back). I have alarms set up for lots of daily tasks and if I need to be somewhere at a specific time I set myself an alarm giving me half an hours grace so that if I’m in the garden I have time to jump into less muddy clothes. I was so excited to go to carols on Christmas Eve but I completely forgot because I didn’t set myself an alarm.
The phone is also a great tool for Greg, he can see where I am via “find my phone” Sometimes when I go visit my Mum I forget to text him and let him know I’ve arrived safely. With a click of a button he can see where I am. Thank you Mr Jobs.
I have needed to write down all my passwords, there are only so many times you can hit “forgot your password?”. I’ve also been typing up step by step instructions on how to add a blog because I kept forgetting the order.
It takes me hours to type up a blog and then they are re read and edited over a day or two. Sometimes I pick up errors but mainly I just need to check it makes sense. Morning Rachel is much smarter than evening Rachel so I never publish anything until morning Rachel has checked it over.
I am grateful that I have a place to put my thoughts and thank you again for reading my words. It helps me feel as though I am still connected to the world. This would be a very lonely journey without you.
I was chatting with friends after church a few weeks ago and I brought up the Fibonacci sequence. None of them knew what I was talking about.
So lets start with some history. The Fibonacci numbers were first described in Indian mathematics,as early as 200 BC in work byPingala on enumerating possible patterns of Sanskrit poetry formed from syllables of two lengths. They are named after the Italian mathematician Leonardo of Pisa, later known as Fibonacci, who introduced the sequence to Western European mathematics in his 1202 book liber Abaci.
The Fibonacci sequence isa set of integers (the Fibonacci numbers) that starts with a zero, followed by a one, then by another one, and then by a series of steadily increasing numbers. The sequence follows the rule that each number is equal to the sum of the preceding two numbers.
Fibonacci numbers appear in so many contexts in our lives and surroundings, for example, the number of the petals in a flower, the seed heads of a flower, paintings and a lot more. In fact,the beauty of a human face is based on Golden Ratio whose nth power forms the nth Fibonacci number.
The bones of your finger (including the bone from your knuckle to your wrist) follow the Fibonacci sequence. We have 8 fingers in total, 5 digits on each hand, 3 bones in each finger, 2 bones in 1 thumb, and 1 thumb on each hand.
It’s often referred to as Gods finger print on the world because it’s one of the best indicators that we live in a created world. It’s that one topic that stumps many atheists, it’s just impossible to brush it away.
One of my fellow students at bible college was a guy named Andrew. He was actually a scientist who found God when he looked into his brand new nano microscope.
Until that moment he and his colleagues had only postulated that there were nano sized living creatures. The day came for them to try the new microscope and he went from a devout atheist into a true believer with one look. The organisms were beyond tiny and they were perfectly formed, they also had company. Even smaller creatures existed and there were a lot of them. The only logical conclusion for him was that they had all been created.
I told my dad that story shortly before he died - it really struck a chord with him. Sometimes the stories we tell each other are so important.
Even our fingerprints have traces of the Fibonacci spiral. While we all have a unique finger print, the arcs that are in our prints will follow along the Fibonacci arc of the spiral. So each one of us carries around a reminder of who made us – our fingerprints show the fingerprints of our creator!
The Fibonacci Sequence is not just a made up geometric pattern, but it is the blueprint for all art, design, architecture and many other creative works. There are some great videos online if your interested in knowing more.
Ask the bushes of the earth, and they will teach you; and the fish of the sea will declare to you. Who among all these does not know that the hand of the Lord has done this? In his hand is the life of every living thing and the breath of all mankind. Job 12:8-10