Time They R Changin' is a song from Bob Dylan that was quoted by the neurosurgeon who is going to conduct my daughter's brain surgery on the 23rd of August in one month time. Let's hope it will happen ...
In January this year, there was finally consensus between the surgeons (Sydney and New York) about the necessity to carry on a posterio fossa revision brain surgery. The last surgery happened in Sydney in May 2018, and although we registered a slight mobility improvement, from January 2019, my daughter began to be prone to severe loss of consciousness episodes that took her to emergency every time they lasted more than 50mn or if there were complications. For the last two years, emergency services were called every two to three weeks, with nearly daily minor episodes. The original idea in New York was that the 2018 surgery would be revised three months after, if no significant improvement was observed. The Australian approach was more conservative.
We had been waiting for 3 excruciating years, emergency stay after emergency stay in a dreadful Covid situation, month after month, day after day, hour after hour.
This time, after reaching medical consensus, we decided to do it in New York on the basis that the NY surgery team advice had always been right until now since we started consulting with them in 2016, that they would be able to conduct a test that could not be done in Sydney and that would inform the surgery, and, mostly, they had more experience in the matter. On the other hand, the Sydney neurosurgeon said he did not think this last surgery would do much, and that there was a 10% chance it would even get worse.
In February, before making the zoom consultation appointment with the New York surgeon, I consulted with the family in writing, asking if they could/would contribute to the cost (over 150K USD). My ex parents in law, my father, my ex husband said they would. My ex-family said they only wanted to deal with my daughter though, despite me asking them kindly to leave her out of money matters as she had enough on her plate.
By then, with what was already emerging as an appalling attitude, in total disrespect of my recommendations not to involve my daughter in money matters at such a time, I knew none of them could be counted upon, since past behaviours are a strong predictor of what will happen now, but I had to allow my daughter manage her 'autonomy'.
Accordingly, my ex was made part of all the main neurosurgeons appointments, and he agreed that New York would be a better option. The Blue Jeans consultation appointment with the US was granted for mid-May, and despite the obvious risk attached to this kind of surgery, we were told that pressure on her brain stem as a result of the previous surgery work could be reversed and her life improved in terms of pain level and emergency presentations (every 2 weeks at the moment). We also consulted with our local neurosurgeon in Brisbane who did the first two surgeries and who cautiously supported this decision. After we left his surgery, my daughter called her dad asking if he would pay for the surgery in New York; he said yes. Although he does not pay any pension, he had agreed to cover medical costs in the last days of the divorce negotiations. Since we did not go to courts, it was not 'binding'.
On the 15th of June, no one had yet sent any money or given me nor my daughter any reassurance that they would. At the same time, I could see that real estate prices were starting cooling down with global interest rates going up and I knew I would need at least one month for the settlement. Time was not on my side.
By mid June, my daughter asked her dad when he could come with the money, and he told her last minute he would not pay because (1) it was more than he thought (he had known for five years at least) and (2) he did not have the money (he had at least an investment property equity from our marital pool worth twice the amount in cash).
To make things clear to all (mostly in order to avoid the 'I did not know'), I consulted with the family again via email stating the surgery day, the 23rd of August, the payment deadlines, and amount.
Not just him, but not one of them stuck to their promises. (Yet, they are all part of the investment properties or time share holiday house club! No excuse for this kind of crowd)
They all pathetically went from one lie to another as to how much they had understood the amount was, or as to how much they could contribute, to finally contribute to nothing for the whole of my ex-family in law, while my dad paid for the (Bus Class) tickets to go there, with some money left for my daughter's own personal expenses.
I was left to pay for the rest: the surgery (a triple digit K amount that was not improving with the US dollar soaring), insurances, hotel in NYC for three weeks for the two of us.
I had three weeks to sell the house for a settlement on the 8th of August and a departure to New York on the 13th of August.
The pressure was immense as a result.
In the meanwhile, if you must know, the dad and his girlfriend went to Morocco and England for five weeks in June-July. No expenses spared when it comes to holidays for this kind of crowd. They probably think they need them ... for what they do ... beside looking after themselves!
When he was at his parents place, after I disclosed proofs that Paul had the money, there had been meek talks of selling his investment property but nothing concretised. On his return, the story changed again. He was going to keep the investment property 'for my son later since my daughter would inherit from me' (who said?).
Note the archaic sense of mislead entitlement as to decide on what I would do with my inheritance, how he still regards my house as part of 'his' pool of assets to dispose of, when it never was his in the first place. The bottom line is that he is not paying anything for my daughter and never will of his own account. That is what you call a gas lighting job.
It is quite remarkable that intelligent people let him get away with such things ... you get away with a lot if you are a Professor (Pr BS, if you ask me).
I had the decency to involve him in major decisions around our daughter's health in the hope he would finally come to his senses on such a major issue, but I don't seem to understand that some people are beyond basic human decency, and believe me, it is not written on their face or CV.
At the end, I feel lighter for having done the right thing by giving them all a chance to be part of it. Very very luckily, the bottom line is that I don't really need them to achieve what I set to achieve, but I can imagine that for a lot of women in my case, it is not the same, and the law does not protect them nor their dependants. This also has been beyond my comprehension as a woman in 2019-22.
Back to what really matters now...
The NY trip preparation involves moving everything in storage on the 8th of August since there is no time to buy elsewhere before the 13th departure, preparing a suitcase for NYC and one for our stay at a friend's place on the 8th of September when we return to Brisbane if all goes well. We will have to stay in NYC until my daughter is deemed fit to travel again.
It also involves reports from the local and US surgeon's preferred neurologists, neuropsychologists, including making these appointments in Australia and in the USA. It involves getting our 4th covid booster dose on time, finding a specialist who gives us flying clearance since her general practitioner declined to sign it. It involves finding insurances despite none of them accepting seeking treatment or surgery overseas as a liability. It involves electronic visas, international proof of covid vaccination certificates, booking accommodation near the hospital to minimise risk of covid, driving on the right hand side of the road again :) etc. Right now, she is in pain management at a local hospital for a week to boost her resilience in a timely manner before the trip, so that her tolerance to pain medication get optimised, as part of our preparation for the trip as well.
On the bright side, the house has now been sold in a satisfactory manner, even if I had to make some compromise on estimation price to reach the tight deadline. Given the circumstances, the sale result was a feat, just in time before the looming bearish market mood. I had great support from real friends, and my house is empty from all the superflux that my daughter managed to sell on FB Marketplace with gusto, but the house is FULL OF FLOWERS from friends and neighbours. I also have a friend who offered to take her to Egypt on a tour he runs himself for free if she gets better.
A friend offered me to stay 'for as long as I need' in her house, where her daughter, a friend of my daughter, lives at the present time, 'so that I do not have to make a rush decision in buying something else too soon'. My friend is currently in Europe (until November). She even said 'I can sleep in the same bed as my daughter when I come back from Europe!'. I won't let her do that, but SO nice...
A neighbour had suggested GoFundMe but I saw the results of a high profile girl's GoFundMe campaign, who shares valuable information with our community on this condition as well as generously describing her own case, on a website she created: she raised 2.5k only! Shocking amount despite her very good campaign. My reach would not even be as wide as hers, especially after so many years of isolation. It is a rare and not well known condition that not many people can associate with, relate... this means less support. Interestingly, GoFundMe had much better results for local people affected by recent floods... since they all know it could be them next...
We did it on our own so far, this is quite something already.
NYC, we are comin'...
I just feel a new freedom... after so many years of confinement, even if it was in this beautiful house.
I see this trip in my mind in the form of the statue of liberty; a nice overall feeling, like the statue is overarching it all, despite what is in front of us still!
