Cruising along... Brisbane river 2023
2022 ended toughly with a number of painful presentations to emergency... hence the delay writing the end of the year wrap up page, as I usually do.
Wishing you all a healthy 2023 with nice surprises along the way.
Since you may ask, recovery for my daughter has not been linear, but this was to be expected, so I did not want to draw conclusions too soon. In fact, from the specialists' opinion, no conclusions can be drawn before June this year. As I told many people, we are happy that she is still alive. She arrived in America with only a few weeks to live if nothing had been done, and I don't know what to tell people when they STILL ask me 'was it worth it'?
We had one month and a half with no seizures around October as we managed to reach baseline pain medicine. Our hopes went high, we 'dared' planning going on holiday or resuming a 'normal' semblant of a life, like going back to work physically for a couple of days a week at least, or/and taking a placement to complete my Postgraduate Psychology studies. 'Normal' is somewhere we don't dare thinking about because if it does not concretise, it is very painful to get back to 'not-normal'.
In November, we happily moved to our new house.
Despite going from 200 sqm to 62 sqm, we enjoyed unpacking all the things we had bought in New York for our new life in our new house, we enjoyed making plans with the architects, and we quickly (2 weeks) renovated the inside before moving in (sealing the roof and open wooden floors, new paint throughout). We had to think about each object, forget about dishwasher or freezer, and keep a number of memorabilia, personal art work and books in storage. It is getting rid of the books that hurt the most; they were so part of me, and I wanted to share them with my children and children to come one day perhaps ... but the truth is that they never asked me one so far ... they buy their own.
We were made felt welcomed by the neighbours who invited us to a party early December. It was so lovely, gathering in their garden around two tables, eating marinated mini-shredded turkey buns on grey linen tablecloths.
Then, by mid December, all hells broke through. There was again fear of infection, which revealed being an allergic reaction, ... to what? No one knows, but it has now been solved. Long seizures came back... our moral went down.
Presentations to emergency involved making a case so that they could prioritise her reasonably - last time, they left her unconscious and fitting for four long hours. I asked to have her move hospital for the first time in 7 years. I was told by the emergency head that 'her readings did not show that her life was in danger' (meaning oxygen level & heart rate satisfactory), that it was only FND (functional neurological disorder, a large umbrella for non epileptic seizures), so there was no need to prioritise her. When I pointed out to the pain getting out of control, and her eyes crying while unconscious, I was told 'crying could be from the realm of reflexes' - could be!
Would you take the risk?
As for the pain spiralling, when we know that it is high pain levels causing the seizures, he said 'the science is still fuzzy about it'. For him, the pain signals are only psychological, 'her life in terms of physical signs of distress is not in danger', there is still a strange separation and hierarchy between physical and psychological pain. Yet, we know that even taking a Panadol can reduce psychological pain. I shut my mouth (with difficulties) since I am working for Lifeline as a volunteer dealing with people on the brink of suicide, and yes, I can highly attest this fact: psychological pain kills and it certainly does not help chronic pain patients.
As for the breathing risk component, I explained that CPR (that I was asked to perform a number of times by emergency services in the past while waiting for the ambulance) was not necessary since hyperventilation can be sorted out with putting a mask or a paper bag on her mouth... sure, but this is assuming that the hyperventilation is caused by panic attack, which no one really knows for sure.
Lastly, when I asked why the neurologist's protocol of giving her ketamine had not been followed yet after four hours, I was told that the resuscitation bay was 'busy" and that if something was going wrong 'he would be responsible'.
The other argument was 'ketamine treatment for pain' is controversial, and two in-house neurologists advised him against it because of its addictive nature. I explained that her neurologist, neuropsychiatrist and pain management specialists agreed as a team on the treatment - her neuropsychologist actually lectures on the subject of FND worldwide - and that the alternative was to give her a large dose of opioids which are even more addictive. What is your solution then? He agreed on giving her ketamine but in a smaller dose than prescribed in the protocol. Last time this was done, not only did we leave the hospital with a P6/out of 10 pain level, but she presented to emergency again the following day.
He said the protocols were written by specialists from the private sector, so, if they wanted their protocol to be followed, I had to take her to their private hospital or ask them to write to this hospital directly. I explained that she was no longer accepted to the private emergency services because of the presentation frequency and supposedly their inability to cater for such complex patients. He said they had the resuscitation facilities. I explained that being accepted in pain management in the Public system has a current waiting list between 1.5 and 2 years, we enquired in November for this very reason (access to emergency care), so what do I do in the meanwhile?
No comment on that one.
Going there is like going to hell for me. I never know how it will go nor in which hospital we will be redirected. Sometimes, you get the best of care to be fair, but each time, you throw the dices,
and all the doctors and specialists are hesitant to intervene on our behalf. I don't think it is easy for them to deal with this system either.
I did address the private hospital issue two years ago with a lot of difficulties formally addressing boards, etc. I eventually wan access back with a letter of apologies from the private hospital linked to the neurologist, but three months after, we were back to status quo. I can not be on every front, and complain to every hospital, so I gave up.
On the bright side, we did not get her breathing to stop abruptly as we had experienced more and more frequently pre-august-surgery, and the frequency of presentations has decreased. In January-February, we are now one month and two weeks without ANY presentation to emergency. Even I feel so much better for it.
Fingers crossed for the improvement. She is also getting stronger with her muscles, she can lift more, and is now able to take the dog regularly for his walk 10mn in the morning, building up physical strength slowly but surely. We are trying to keep the physical and psychological pain level down to maximise recovery, so we have cut on activities such as university studies, but she has enrolled her dog in an obedience class, an online wood furniture making class, and we are creating a beautiful garden with elevated vegetable gardens for her.
On the down-side, I have been diagnosed with Alopecia Areata - massive sudden hair loss. The oncologist went out of her way to find a dermatologist for me despite waiting lists going to August, and I have been on steroids for 6 weeks. She explained that it was more likely due to high stress as it was very sudden and fast but with a fair chance of growing back within a few months as a result. My breast-cancer preventative treatment has now been running for 3 years of remission, and she said hair loss as a side effect would have happened in the first 5 months, which was not the case. Otherwise, I am doing well, my back pain has gone after this abrupt removals involving heavy lifting despite having booked removalists, and I am psychologically well although I still find it difficult to absorb the fact that both my ex-husband and my father had the money sitting on their account, without the need to change their lifestyle or sell their house and that they still let me bare the entire cost and the trauma of selling the house where my son learnt to walk, in the most difficult circumstances of a brain surgery in the middle of covid.
Serious let down from the family for sure. I still don't reconcile the family narrative in my mind. We always upheld high family values during endless Christmas party rituals etc... If you had told me ten years ago that they would behaved this way in such a situation, I would not have believed it.
Otherwise, life is settling nicely now.
I am so happy to have had the freedom to get the best care available for my daughter, and it is quite clear today that I may not have been able to do so, should I have remained married. The government did not exactly help either, since I could not make ends meet without working - it does not seem anyone realises that looking after a disabled person IS a full time job, that, in fact, not many people can do, if you ask me. Hello world, how many shifts a day can a person alone do? ... , so my advise to young women is 'be the rich man' (https://www.youtube.com/watch?v=dZsL5R_CR-k - Cheer says 'I am the rich man')
I was lucky to sell the house when prices had gone up 30% in 2022 in my area. This, compounded to my own renovations, I was able to enjoy a suitable capital gain
of nearly 100% compared to pre-divorce valuation (2019), but you must keep in mind that, despite the fact that I managed to round up 400K on my own, I was to buy back in the same market four months later, and that renting was not going to be an option for me. I also forfeit retirement savings money since I am way below what is needed on average to retire, which means I will have to work until I drop.
It is clear that despite people seeming happy that their house price goes up, it does not change anything in their quality of life, they could not move to a better house but it changes the quality of life of their children who won't be able to buy a house out of their salaries like they did. Residential properties prices going up is only good for investors who can chose when they can buy or sell.
All these renovations efforts were intended to that purpose in the back of my mind because I had an intuition that I could only count on myself at the end, even if I almost and wishfully believed my ex-, his parents and my father when they said they would pay for it early 2022, since 2015 for my dad. I thought that that would have been the least they could do, a meagre contribution given the fact that they already owed me much more than money for taking the full responsibility so far of what ought to be regarded as a family responsibility. Where is the village, I am asking? Yet, you see countless people going solo on full care of a loved one, and everybody shuts their eyes around because if they don't see it, it does not exist in their mind, and it does not strike them that in a hospital, you need three nurses to cover the three shifts, while in the confines of the home, the carer is alone.
So here we go, the surgery went well above the $150K USD estimate given years ago, and confirmed beginning of January 2022, since we had to stay longer in the hospital and extend our accommodation stay. We all knew that health care cannot be estimated accurately since it depends on what happens at the time. The indirect cost of a record high US dollar is to be added. So should be added the normally unnecessary cost of selling the house, 50K Aud of real estate agent fee, and 50K of governmental stamp duty to buy a new one.
My mother in law offered 20K Aud after the house had been sold!, despite me giving written evidences to everybody that there was enough equity in her son's investment property taken from the matrimonial pool - they knew, so did his new partner. All seemingly intelligent people, all owning investment properties. A little bit too little and too late.
We said: no thank you.
As for my dad, it is not much better, he decided in May 2022 that he would split the money he had in cash in the bank between the four grand children, just when we needed it, knowing that it could have paid for the surgery without having to sell the house. He said he wanted to 'be fair' ... well, the other ones were not quite in need of life saving brain surgery... I spare you the details. At least, it paid for the tickets. I am saying all that, with hesitation, but I do, because it is silence that allows these kind of attitudes to perpetuate. Today they all blame each other: my dad says my ex should have paid, etc... what a sad lot.
I was not and never got rich through wages, this is something from the past, that only the baby boomers generation enjoyed for 30 years during that time of unprecedented economic growth and fair distribution. The only wealth made before and during the marriage was always through real estate - very sadly, a mark of our times. Like many people in the current economy, my salary has not gone up for five years and it only pays for the necessities, not even holidays. So, boosting the house value was the only way to pay these medical expenses, I knew it and this logic has not changed since I bought my first apartment in Paris as soon as I started working at age 23, which became my ticket to Australia after I sold my first apartment twice the price I had bought it for, riding on a timely capital growth wave, just like now.
Now, back to the Here and Now...
Life in Paddington is good!
The house was a bit like a rough diamond. The brassware of a pre-1910 dwelling was a bit off putting at first.
but with a few tips from the local hardware store, we managed to clean it up nicely, into something which looks like gold, lol!
We also managed to have a nice Christmas party on the wobbly deck with exclusive friends - those who are not put up by appearances when things get tough ... the best of friends.
Thanks to her pain management specialist, my daughter spent one week in pain management clinic, which helped reset her opioids receptors.
It is a miracle I still managed to keep my job. Working from home is a by-product of covid realisation that, yes, it was possible indeed, and people like me benefit a lot from this new working trend. The alternative, a carer payment would take me below the poverty line and I would not even be able to buy healthy food. I also kept my job with ENN Nutrition Network in the UK.
We still hold a storage place - see garage space below that I managed to half in December. My heart was sinking as I had to let go of so many things, I kept the strictly necessary. A lot of it went on FB-market place, and that helped us buy a new table and chairs and build cupboards in the bedrooms - still waiting for tradies to come back from holidays.
My books are my lifeline, these were sent by one of my best friends from France during the ordeal
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The minimalist experience - the fridge goes under the sink, not unlike the standard size of fridge in Paris when I grew up, no freezer of course, but there is a Gelato shop walking distance. The feeling of reducing my impact on the planet is highly aligned on my inner values, and makes me feel really good.
Brisbane Jacaranda trees. The flowers rain purple flowers in October, and we have got one in our back garden for the yearly ritual.
Incidentally, a paper with my name trailing along was published in Psycho-oncology in March this year - please note that I do not publish any names on this blog as usual. As the lawyer said, no matter how many diplomas or qualifications you have, it will not change anything when you have nil support in caring work that all families need one day or another. I would add: it even makes things worse as I told my mother once but at the same time, studying is hope and my way to travel/explore new territories.
My thesis has still not been fully assessed yet, which means I can not enrol in 2023. The scholarship stops mid-January, another challenge to come but I already lived on this part-time work salary and this house will be cheaper to maintain.
All the Master of Sciences course work has now been completed satisfactorily at least if not the thesis which is taking such a long time to get feedbacks from. As required for registration as a psychologist, I would have at least two more years of studies and it entails placements time commitments. I would also need related work experience to be competitive for admission. Hence Lifeline voluntary work (requiring their own additional training online over six weeks that I partly completed in my hotel room in New York during non visiting hours).
My Lifeline work, as a digital support worker, is more about 'sitting with the pain' 'listening to help seekers on the brink of suicide for most of them via Chat channels' and 'holding their hand metaphorically and non judgmentally' moving towards various stages of empowerment during the conversation until they are able to formulate themselves a strategy to survive. We are not encouraged to engage them in any psychological therapy for which we are not yet qualified; we are more there to 'help them make it through the night' just like emergency services. When I say 'just' ... not sure it is the right word, because it is quite challenging. The format is highly structured, digitally monitored, timed and scripted. The advantage of Chat is obvious for domestic violence situations and is liked by teenagers. We find that people have more time to think and they open up more as well when they write-chat ... My only satisfaction with that job is that so far, I found that the people who reached out to me were in a better place after our time interacting. They are, unfortunately, the people who need most psychological help that they can't afford in the current system. The newly elected leftish government has just slashed on psychological Medicare subsidies (you pay 250 Aud a session, the recommended rate by APA, and get only half from Medicare, and that is still called and widely advertised as your free (?) 5 yearly sessions by the government). To make things worse at a time when psychological care has never been so needed, the training for psychologists has been made even harder with one more year study in 2022.
I have been criticised for going outside of the script too much... fair enough, but it is because I know that the harder things are for you on the social strata, the more you are objectified and I probably have my own way to measure outcomes than the 'stick to the script' measurement of performance.
I am not quite yet at the end of the tunnel,
I live in alignment to my values, and I can see some improvements in my daughter's heath at the moment, not miracles :)
Last week, on Saturday, my son came over at our new home. He looked after my daughter for two hours and I went to see a famous Israeli chef who owns a number of restaurants in London talking about his life and promoting one of his famous Mediterranean/Californian inspired cuisine cook book co-authored with his Palestinian Arab friend and colleague. I am looking forward to cook these colourful recipees now. He jokingly explained that his son had said the meatballs were better at school, and as a journalist was asking him about his life as a father, he told the journalist the story. Since then, the school canteen Chef has posted the journalist article in the school yard, publicising that his meatballs were better than the famous Chef's. You see, life is tough for everyone :)!
2023 will see us enjoy the good things in life. Time now is for healing with my daughter.
