Life is Sweet ... and then...
A stroke - what does it mean to be struck by a stroke? As a child, there were times when I saw something perplexing; odd movements when walking, lopsided smile, facial disfigurement sometimes. Was that some form of ailment. My child's mind thought no further, being at play with other kids - stroke, being struck by stroke seemed a lifetime away.
What if a catastrophic event came out of nowhere, and forced you to re-evaluate everything. What if you were struck by a Stroke but that you'd survived? Cut down in the prime of life? How would you manage and what is there of life after a stroke? Would you be a triumphant stroke survivor? Like a blood vessel in your brain that suddenly pops, when you least expect it. How does inspiration come into the picture, when basic survival is the only thing that matters?
A lot actually, as it has a more to do with how you want to use your brain, not necessarily what condition it is in, although that does help.
This is about Jackie, a stroke survivor, and how she has added her personal touch to our property in Spain from her experiences, plus how the property has provided inspiration for her; an unusual form of stroke rehabilitation.
Life: having a great time...
At school I played the piano and accompanied performers; conducted the choir and sang; started a newsletter, I played netball for a winning team for some years. Early 90's, I was a happy-go-lucky girl, with a husband that shared my sense of humour, my love of photography and travelling. I loved to dance, with ballroom and latin-American my favourites. I could ski on snow, not very well or very elegantly, but it was exciting, and we always enjoyed the mountain environment and apres-ski.
I did jet-boating and white water rafting in New Zealand, para-sailing in Australia. Low-key travelling around Egypt: the Temples of Abu Simbel, Luxor and Karnak. Took a camel taxi in the desert at Aswan, the Donkey Express at 3am from Luxor to the Valley of the Kings for breakfast and Queen Hapshetsut’s mausoleum for lunch, and in Cairo hung on for dear life on the back of a horse at dusk around the pyramids of Giza.
Greece, Santorini, free and easy two-up on the moped, inches from plummeting down the slope into the sea. Turkey, Ephesus and the Cotton Castles at Pamukkale. And of course Istanbul, browsing the grand bazaar for slippers with curled up toes and visiting Dolmabahce Palace and the Topkapi Palace, and...
St.Anton, in Austria...... Ephesus in Turkey .............. and Valley of the Kings in Egypt
….perhaps Petra in Jordan for our next trip, or do the Silk Route to Lhasa (Tibet) and visit Potala Palace. All this and more, were playing on my mind, as I had happily been planning the next summer holiday.
Everyone who is alive owns an expensive watch: it's better known as your life clock. Your life clock is indeterminate: it could stop after 20 seconds or last up to 120 years, or fail somewhere in between. On the very rare occasion it resets, which means you get a second chance.
7th June 1995 the clock fell off the wall and cracked the wine glass, with good quality red going to waste and suddenly stopping everything in its tracks.
This is an analogy to describe experiencing a near-fatal brain haemorrhage leading to a stroke, and then enduring intrusive brain surgery to stem the flow of blood. The haemorrhage was due to an Arterio Venus Malformation (AVM), that had drastically ruptured, nearly obliterating one hemisphere of the brain [CT-scan], in a massive brain-bleed.
An AVM is a congenital disorder (one present at birth) of blood vessels in the brain that is characterized by a complex, tangled web of abnormal arteries and veins. As such, the AVM carried the volume of blood normally associated with an artery: like a country dirt road that has to handle highway traffic, it will fail as it is just a matter of time. Cerebral AVMs are rare. 1 in 10 people whose first symptom is excessive brain bleeding will die. The prognosis wasn't hopeful.
The post-op effects were paralysis on the right side, losing the ability to talk, read, write, walk, or remember (short term memory was gone), and confined to a wheelchair; it took more than six years to not have to rely on it.
A wine glass can be replaced or repaired and then refilled, but what about a human brain? All that skill, functionality, emotion and potential splashed about and gone - it'll have to be recreated, if at all possible. Visions of replanting the grape vines, and sifting sand for silica granules to make glass.....
The best abstracted visualisation of a brain haemorrhage you will ever see....
I recall waking up in hospital, post-surgery, wondering where I was, and what had happened. Why am I in a hospital bed? Why can't I move? Why can't I talk? That's my husband, and I can sort of understand him.
He frequently asked me if I wanted to know what happened, and I recall shaking my head... this is too big. It took a week for me to sort through the frazzled fragments of short-term memory to agree to know. A stroke, he said, a bad one. What the heck is a stroke I thought?
My puzzled look prompted him to slowly explain what the stroke was, this particular type. It took repeated explanations about the stroke to finally get through my addled brain. Then I did the only thing you could do - I burst into tears.
Any stroke is bad enough, but this one literally came from nowhere with devastating effect; my life as it were was scratched out at a stroke (pun intended), leaving me with permanent disability, although there was always a chance of some recovery but that depends on the severity of the injury from the stroke and the willingness of the patient to try and improve.
The initial surgery was the typical emergency type: cut open the skull (no pix obviously). The second bout of surgery that was necessary was radio-surgery with a linear accelerator, 6 months later. The above photos of the stereotactic frame show how a grave and forbidding time it was. .
Stroke rehabilitation is usually defined by what hospitals can offer, whereas anything else is up to the individual. Conventional or alternative, therapies can only be considered effective if individual strives to improve. Recovery from this sort of stroke, or any kind of stroke, is not definitive so there are only two options: resignation, or come out fighting. So where do you start? - at the beginning. How do you cope? - with a lot of love and support. How do you take it? - one day at a time. When will it end? - it doesn't until your clock stops; in my case, I got on with it.
Life is a journey, so make it worthwhile. How's the journey so far? I finally dispensed with the wheelchair and now get around thanks to a leg brace, a bit slow but I'm mobile. Here's the difference twelve years at it makes:
Despite having lost a lot of physical functionality, being involved in the property renovation has spurred me to try and do other things, on my own. I decided to write a cookbook based on two of my favourite pastimes: cooking/eating and travelling.
Not content to leave it at one, given the time of publication (2008), I released a second smaller cookbook concentrating on the plainer, simpler method of eating well, without having to worry about the price-tag, in preparing delicious food for the family.
Almost at the same time, I developed some ideas for a novel, a lot of the background coming from my travel experiences in New Zealand back in the early 1980’s, just after graduating from university. The result is a children's story that spans two books.
Then there is the silk painting, with inspiration from landscapes in France, the corals reefs of Egypt, and flowers in Holland; to name but a few. Designing and making costume jewellery (albeit it with a little help - one hand can only do so much). Plus how to make elegant flower balls, like we admired in the Wynn’s casino in Las Vegas in 2005.
Inspiration : what does it mean to you?
In our case, it means:
- holiday / travel: see different things, do different things, meet and talk with other people from different countries and from completely different walks of life
- this means different perspectives that you are not normally exposed to
- which gives you a greater breadth of knowledge to compare with your own
- better known as ‘life experience’
- real experience counts, perhaps more than virtual; going inside the Pyramids at Giza sure beats seeing it on Discovery Channel
- best ideas come from raw material from obscure events, mishaps, an even meaningless detail (at the time)
- inspiration is innate in everyone; will you use it?
- when an opportunity arises, do you take it?
The renovations were an opportunity to bring ideas to life- we've added elements to it that we discovered on our travels. And it has opened up other possibilities.
The internet has spawned a new era of global awareness of different countries and cultures as well as learning about them, in that the sweep of a mouse and the click of a button can deliver so much to the user, on demand. The PC can deliver text, sound and video, from all corners of the globe, without the individual needing to move from their chair. It is comfortable, safe, and no other medium can compare.
However, the virtual experience cannot ever replace the real experience of travel in that there is an element of surprise, change, excitement and even danger than can never be experienced behind a screen, mouse and keyboard.
It is the real experience of travelling that puts you in situations that give you inspiration, even if it perhaps it might cost you your life. It's after the event that you can draw some comfort and conclusions. We've travelled quite a lot over the years, and other than the usual gamut of souvenirs we seem to bring back with us, it's the intangibles that are worth far more.
Like shared experiences of meeting different people, tasting exotic food, trying new activities, and seeing new things that either take your breath away or leave you scratching your head.
Renovating our Spanish house opened up new avenues of thinking creatively, in that as well as chucking around wild ideas brought back from vacations and making some of them fit at the property, other possibilities have emerged and have been acted upon.
Lastly, who would have though an inanimate property would be a good tool for stroke rehabilitation?