Goodbye2016

A prelude to Christmas mood, this was a Welcome Back Bow that I tied up on the rear deck for my son's return from India.

2016 has been divided in two races: 

1- Preparing the Indian trip for Oscar - this included fitness preparation (walking camp in Woodford), financial preparation (Subway job), fundraising (school sports canteens), finding the right gear (thermal inner liners), Indian visa interview (was your grand father Pakistani?) ...

and finally the day came when, at the age of 15, he was able to go to the Himalayas with some of his best friends, a school teacher and a very experimented tour leader able to handle 28 teenagers in rugged areas, torn by upset stomach, rough jeep and bus mountain rides, with night temperatures below 0 Celsius,

Well worth it though....

The trip ended with a visit of the Taj Mahal, jewel of Mogul architecture. I remember for ever this exquisite second when, at 23 as a solo-when-it-suited-me traveller, I glanced through this very door, and it all came at once, the sheer wonder ... 

I remember thinking : makes you proud to be a human.

And boys will be boys ... chatting with seat-number-people with his mates randomly in the plane ...

2- Finding a cure for Josie

This was by far the hardest race ... and it is not sure we'll win that one at all. On the 20th of December, as we parted from her neurosurgeon, he said what you never wish to hear from your surgeon: 'now, only a miracle ... we have tried everything' and when we gave him a small present as a token of appreciation for all the work he did for her, for Christmas, he said: 'how is this going to make me feel now' ... yes, he had tried very hard ...

and so did we... I ended up reading neuroscience papers at 3am when I could not sleep (about 50 of them?), coercing Josie's friend to give me her password to access to the UQ library (and she did), I copied complex imaging files to send to the US for an expert opinion with the help of a geek programmer friend and his wife running to JB HiFi to get the CDs and working out media, compatibility and hierarchical issues. When all was ready, all I could find for the CD was this pink case - looking like a lunch box (I deleted confidential info with pink ribbon) - and I thought,

'what the hell, at least, it will stand out!'

And it did, a few weeks after, we got a much anticipated Skype interview with a subject expert neurosurgeon, Director of Research of the Chiari Institute in New York, where the still controversial link between hypermobility and Chiari I has been first established a few years ago, with hypermobility being one of the possible causes of the Chiari malformation. The interview was scheduled at 2:00am and after he excused himself for an emergency surgery, we ended up doing it 4 hours later. He proposed a radical surgical solution that would lessen the pain dramatically if all went well, being sure at 97% of his diagnostic. He also joked that hypermobility is what takes some people to the Olympics, but that it is bad news when it is in the join between the spine and the skull; but in view of the latest imaging, and after much brainstorming among the neurosurgeons in Australia, it has been prudently decided that we mustn't seek further surgery since, without thinking only about the high surgical risk to her life and irreversible side effects, while there is no doubt she suffers from hypermobility, there no instability. 

We also had to find a specialist EDS-physio, an holistic physio, a pain management specialist, a rheumatologist, ophthalmologist, gastroenterologist, neuropsychologist, pain psychologist, former high school counsellor for comfort and guidance, you name them! ... the only one who is optimistic is the rheumatologist who sees her - against all odd - pursuing her dream of becoming a nurse one day. 

I would like to believe him.

This last month has been encouraging, we see some improvement on last year when we were in emergency twice a week, and when we spent New Year's Eve watching the fireworks from the hospital roof. We now know that she can survive excruciating pain, there are a few hours of curfew here and there that we greatly appreciate and enjoy, pain killers seem to work better, we understand a bit more about pain triggers - minimising movements and exertion - which is hard to achieve when you just turned 20 and want to live!

the strict physio regime for the last six months and her incredible resilience seem to pay off. 

We managed to spend a nice Christmas eve with a few of her closest friends, and on the 25th, I even got a 'flamingo nighty' hand made by my daughter with a 'J' threaded in the back for the exquisite, limited edition.

I also got a very unexpected and much appreciated gift from my son, an iron-cat he carried back from India, supposedly an antique, he said. I keep it next to me and my computer. 

My son explained to my husband that one of his two presents had been kept by customs :) - imagine Christmas before Customs.

The beauty in such ordeal is that you find out who you can rely upon, and it is not always who you would have thought, and not necessarily the closest to you, but this warmth, this deep sense of connexion that enables some of us think beyond self, is what keeps you going in such circumstances. 

For example, one of my colleague translated a news article on the latest imaging breakthrough in Japan in the hope it might help. A friend took me for a masala-dosa at a local Indian corner store, a special moment :) for comfort and good laughs, some friends are just there, but I feel their presence as pillars, some have sent loving parcels during the difficult moments, some prayed, even though I am not a religious person and they knew it, but this was the utmost gift from them, I could at least understand that. One said that if his prayers were not exhausted, he would stop believing in God, even though he is a highly ranked religious person, because he could not understand why God would let that happen to me. Fortunately, I did not make him lose his religion so far, and I am forever humbled by his incredible sense of empathy, and I like to believe that all this human warmth, good will and Josie's strength has something to do with the mild improvement that no one understands much more than the problem itself.

Last achievement of the year: while I was passing Archerfield amateur pilot airport on my way to a car repair job, I inquired about flying lessons for my son, and before you knew it, he was flying one of these with his instructor. This would not have never happened to him if we had not all been stranded during the holidays for the last two years.  I am told that he can fly solo next time after he has his medical check up done. He may end up with a recreational pilot license that will enable him to fly as far as Moreton Island, but I'll still have to drive him to the airport!

Good Bye 2016, I will not miss you, 

let's hope the war in Syria is over soon

let's hope the works of the good willing will prevail over the work of those who can't see beyond self

'Don't be an object but a subject of your time'

Happy New Year 2017 to all!

Supermoon, 14 NOV 16 Brisbane 17h51 AEST

About Bottling up

I have to write something on the subject because three of the closest people around me have lately been doing exactly this 'Bottling Up' Pain and many other feelings in the process.

Why? 

What do they say about it? ... 

1) I don't want people to see me like that

2) I think that ultimately, I am the only one who will be able to fix what causes the pain

3) Nothing, one said nothing.

As I was sensing all that ---- because they WON'T say anything themselves, so you have to SENSE!!!! (sigh), I realised that this is exactly what I had just been doing to a lesser extend since my daughter had been unwell (last year): bottle up as well 

Looking after someone who needs close and constant care is already isolating, but I think I have made it worse by not talking and deleting half of my Facebook friends 'so that they don't ask me questions', so that we can 'keep our worlds apart', partly to avoid being hurt myself, and partly in order not to hurt them. 

With pain, feelings do sharpen, and if someone says something wrong, it hurts ten times more than when all is well, and you don't want to risk saying something hurting to them either.

What I learned this week is that when one of them 'kind of' reached out eventually, it had a very positive effect on me. I felt joy at eventually getting a little joke from this person and after that, I self reflected about what I had been doing myself to myself and others. I realised how much you can hurt others by shutting them out, by making your friends feel inadequate, as this person had, as I had. 

This unexpected wave of warmth coming out of mutual trust reached out my sharpened feelings, but this time, the 'sharpening' was not against me, it was working FOR me. It opened up my OTHER feelings, the positive ones, I was opening to the world, and I managed to sleep better that night. 

I felt so positive that it is the first time I write again this year, which for me, is a healthy sign. 

So, if this was good for me, surely, it must be good for them. Please my friends, open up, let the bats come out, let the steam come out as it comes in, you don't want to end up like a pressure cooker, because the steam will be much harder to contain then. 

There is a world out there waiting, life reality is harsh from time to time, our world is chaotic, unpredictable. Let's not be hard on ourselves: it is no one's fault.
Harshness to self or others is a form of violence. 

It is an illusion to think that we can control everything - we can control a bit but less than we think. Thinking we can control things is an IDEA (not far from the word 'ideal'). An idea or 'how things should be' is a very human thing about trying to make sense of the world, to create a simplified 'order' when, in reality, the FACTS of life cannot be ordered so easily, if at all.
We cling to our ideas so badly that we often fail to admit reality, even to ourselves ...
we create our own delusional inner world.

There is no order about what is in store for us, and no, we don't necessarily deserve what happens to us:
IT IS IN BIG PART RANDOM,
often motivated by facts that we cannot control.

Thank you for being there, for being my friends, and remember that you will be loved by me, not for your great worldly achievements,
but for being a truthful and sincere person.