Happy New Year 2024!

View from my house

Our rear deck

I wish you all a Happy New Year 

and a few life little miracles, what would we be without them :)

Before I talk about the little miracles, let's acknowledge the hurdles before we can put them behind. 

The most traumatising aspect of 2023 for me was the relentless presentations to emergency. While we cannot get angry at what is totally out of our control, there is a sadness around the witnessing of my human-being fellows' manifestations of psychopathic compassion fatigue. Last post, I was saying that I was waiting an intervention from the specialists, like the neurologist, pain management specialist, or neurosurgeon, explaining the importance of following the emergency protocol. The neurologist was the only one to intervene, and you will understand why since her email to the hospital was not answered. So, we have been presenting to a new hospital for some time, but this is going to run out soon and is not the best way to go. Unsurprisingly, at first, the protocol was followed and after four or five presentations, the protocol was questioned and she was made to wait unconscious and convulsing for hours again. This is in the context of a very stretched hospital system as this newspaper article can attest. At least, we do not risk our lives each time as we did during the covid hey days.

'Waiting' has been the key word for 2023 ... waiting for the doctors in emergency, waiting for specialist appointments and test results, waiting for my daughter to get better, waiting for the thesis supervisors to annotate my thesis ... and during that time, life goes by ... 

... and incidentally, waiting for my hair to regrow... 

This is a picture I took for the tattoo artist recommended by my dermatologist so that she could see what I wanted to achieve by drawing my eyebrow line myself. I have become a bit more of a make up artist in my older years as a result :) never was a natural at it. This hair loss issue has also been an identity issue for me, just like I had to redefine myself as a person without family support and professionally lately. You need to live with a body that you barely recognise, have to accept it and make do with it, adapt the best you can, but relatively, alopecia is not life threatening in any ways ... nothing I cannot cope with.

How about the little miracles?

 For one thing, my eyebrows and eyelashes have come back and my hair is starting growing as well since November. On NYE, my friends will be coming with a wig! I now have a wig for interviews and formal meetings - blond with white streaks, mid-length, after many options presented and 8 months of ponderings. With temperature 37C today, a wig is out of question, so you are more likely to see me with a scarf. I have a huge collection now thanks to my daughter making them for me for all occasions. Hopefully, I won't need any by the end of 2024.

The most important breakthrough is that we haven't been to emergency for 63 days for the first time in years. Pain triggered seizures still occur but they are less frequent and less intense. By catching them on time, we can now sometime avoid escalation. Another improvement is less nausea and more upright time - from two to three hours, which permits longer outings outside home on good days. Supervision at all time every twenty minutes on average is unfortunately still required. Fortunately, we are able to get some help from support workers from time to time but they cannot really help in critical situations as it is very complex and requires being allowed to manage very potent medications.

Rainbow in Paddington main street - Latrobe terrace

What longer outings mean: e.g. we can hit the road towards the lavender fields nearby and I tell you what, you develop such an appreciation of this newly found freedom. Think about how covid confinement has felt, well, for me and my daughter, it has been like that since 2015 and I have always been a traveller at heart.

Another little miracle: my daughter's dog got certified as an Assistance Dog. He is now royalty as he has a special ID which allows him everywhere including airplanes. He is here in rehab at the hospital where he spent one night from 8pm to 8am with my daughter when she was starting having cabin fever after five days. We will be able to take him anywhere if needed.

View from the rehab hospital at night

Getting an ID Photo from the Post Office was a bit tricky

Less things, more contemplations...

Less is More engraved on my desk pad

Sunset from my house this Winter

Brisbane

Our delightful little French Bakery (open 4 mornings a week) and Favourite coffee joint near my house

Paddington Street Art (Kookaburra)

In the good news series, I finally graduated with a Master of Sciences (Research) (Psychology Research) in December and my name was coined in the authorship of two papers published in Psycho-oncology and Public Health scientific journals, but it has not been easy. The many delays have meant that it was too late for me to enrol in what is called the 5th year in order to complete the last part of these studies in 2024 in order to be one day fully accredited as a Clinical Psychologist. As a result, the only university I could apply was the one where I obtained my Master. It is very competitive, since this year, and the admission quota are low: after 4 years of study, only one applicant out of four are taken for this last phase - the mostly practical training phase. I am on a waiting list, I should know in January what happens on that front.

If I had graduated last year, I would already be a provisional psychologist, and be able to work for four years before accreditation. Now, getting this accreditation has become more difficult despite the shortage of much needed skilled professionals; more academic training is required. This was not my plan. I don't know if I have it in me to study another two years. I am looking at my options as they present themselves.

My daughter had a fulfilling year between recovering, the six months dog training, the B1 Alliance Française exam, and engaging in gardening, furniture restauration and cooking (eg octopus) at home or making pieces of clothing for her friends, like this scrub for Nadia and her US surgeon.

My son is doing well. He is back living in the basement part of his father's and father's partner's house completing his engineering studies (mechanical) while training as an Australian army reservist and pursuing odd jobs like stocking shelves in supermarkets during his spare time to make ends meet. In December, he went to Europe to accompany a friend to Belgium who had to take a test there, ventured in Germany in the middle of a disrupting snow storm, managed to catch a last minute Contiki tour skying in Austria thus redeeming a 21st-birthday present credit from covid - he was supposed to go skying in New Zealand for 5 days but it got cancelled last minute in 2021, then went to see his grand parents. He finally spent Christmas in Exeter area (UK) with his paternal uncle and grand-parents.

Despite closing my FB account from August to December this year in order to recentre myself with less noise, I would like to acknowledge the invaluable support from my dearest friends. You can only be friend for life with someone who has performed resuscitation on your daughter, calls or text you when you need it the most, comes to your home for an emergency physiotherapy session, makes you smile, or who has brought you a warm dish when you were hit with covid (May 2023). It was nice participating in my former home neighbourhood reunion last week as well.

And of course, I am grateful for this loving little being in my life, as well, who never misses an occasion to steal the main dog's seat

We managed to grow potatoes but, steady on, we have not yet reached auto-sufficiency yet :) We have beans, cherry tomatoes, lettuces, herbs, one! lemon this year, and also make our own rosella jam.

As for what is happening in the rest of the world, it is almost too painful to talk about it as if we never learned anything from the past (genocide of the voiceless comprehended as numbers only, political and religious extremism, irrational rage even), everybody watching with compassion fatigue here again, and this is what I have to say: 

We only need one flag!

(In truth, we have a common Leviathan that requires collective approach and it is Climate change)

My Books Bucket List 2023

 

New York Modern Art Museum young Intern is pondering the value of mariage in 2023 in the context of her work precarity 

Insider's journalistic account of what it is like living in off shore detention centre endlessly awaiting for a visa 

Millennials predicaments in the current economy

I bought it after watching the movie as I felt like digging deeper in the subject and character. This book is about dilemma in scientific enquiries & International relations. 

International relations from insiders describing the author's public and personal life when she was working as Hilary Clinton Aid. Intelligently written. Intercultural & feminist stances.

How a Sydney artist's wife swallowed hard her own artistic career aspirations and crafted a beautiful garden on public land at the end of her life for all to enjoy its beauty and serenity.

Four friends through their first decades in New York. Very beautifully written, confronting, self harm insights. Not sure I recommend it. Only if you love beautiful writting.

Short read for a lazy evening, always interesting with Simone de Beauvoir 

I love K. Lette's caustic humour. Fun and light read for holidays

About love and identity during the formative years. Poignantly honest.

Confronting.

I wasn't sure about that one because I love George Orwell books. This book is like anthropological work about Orwell's Wife, and how she widely contributed to the writing of Animal Farm etc. Feminist deconstruction work at its best but sad.

A long book but a Must read. The first chapter on breastfeeding is a bit long but it gets better. Scientifically researched but written with humour at times, so very digestible. You'll need a lot of cups of teas to get through that one but well worth it.

Healing at the One year Mark, Dealings with Emergency Services and Gathering our Strengths

One year has passed by since my daughter's surgery and her surgical scars have now healed well. What the surgeon had set to achieve has worked. She is now out of immediate danger and the highest level of pain has been removed. As you may have noticed with your own pain, when you remove one, another layer of pain that could not 'speak loud enough before' may then surface. This is what is happening now. Now that the pain linked to the collapse of the titanium mesh on the cerebellum has been addressed, problems of intercranial instability and other sources of discomforts, that would require a different kind of surgery or intervention, still need to be investigated. In other words, the neurosurgical aspect has not yet been fully investigated. Her US surgeon has contacted Josie's Sydney team to conduct these tests for him. At this stage, we do not envisage any other surgery but the findings would be helpful for her pain management.

Everyday life is now stressed further by the lack of financial resources with no prospects of improvements, and a smaller house, which also limits my prospects of welcoming friends in guestrooms. Yet, doing this surgery was paramount, so I have no regret.

 However, the hardest is dealing with 'compassion fatigue', especially coming from Emergency Services. We are simply no longer welcome there. 

I have already spoken about that. We have now tried four hospital with the exact same result: delayed, sometimes inadequate (common headache medicine) or insufficient pain treatment not following the specialists' protocol. Each time, you never know what will happen. One day, she is rudely discharged too early without adequate treatment and I find her unconscious in front of the hospital (that was when I was not allowed to get in because of covid), and another time, there has been discussions of keeping her unconscious under observation in a minimal supervision area overnight with insufficient pain relief. Luckily, on that occasion, she woke up, was able to dismiss herself and I almost carried her to the car. The problem is what is in store for 'next time' and there is no way I can let a support worker or anyone not well versed into her case manage such situations.

This year, however, I finally lodged a number of formal complaints since I know that we are now in for the long term, both at local (Hospital Patient Liaison) and state level (Queensland Health), and as we speak, the specialists are trying to intervene at the highest level of our catchment hospital (RBWH) to have them implement the specialist's emergency protocol systematically on presentation. It did not come to anything substantial so far beside a meaningless apology not followed by actions. I sadly guessed it would be the case after my experience with the heavily outdated judicial system during the divorce, but I had to go through this process of seeking justice to a reasonable level in order to live with myself, whatever the outcome would be. 

The bottom line is that the Qld Health Ombudsman admitted she did not have medical knowledge but was only acting as a mediator. The second point is that each emergency service does reserve themselves the right 'not to follow specialists' instructions since they are ultimately responsible if something goes wrong. They have their own rules and procedures. Emergency services handle cases in a standardised manner that only belongs to them, for large numbers. 

This highly impersonal system does not suit patient with rare conditions. The management dispensing the authorisation to use such or such drug will let a patient in excruciating pain rather than not stick to standardised protocols inappropriate for rare conditions. This is a nightmare for any chance of long term pain management success. I am also fully aware that there are limits to pursuing justice because there is a point, in these lengthy and expensive processes, when more harm than good is caused even if you are right. Sometimes, I think people in the future will look at this time of 'optimum processes for masses' and think how barbaric we were.

It is complicated, a lot of forces at at play, including the fact that women's 'aches' are not taken as seriously as men's, and the fact that the drug prescribed as part of her protocol is still controversial (ketamine). On the latter, I invite you to see the documentary 'Take care of Maya' (2023) on Netflix, which depicts the dealings of a family whose young daughter required unusual doses of ketamine due to her rare condition with the US Emergency system and how the system (including social workers, hospital in-house generalist experts) took over to the point of withholding all parents rights to an assertive mother and without listening to her discipline expert specialists who were more versed into her rare condition and who had followed her more closely and for longer. 

...

Socially, life is shrinking as well, since continuing this kind of walk is beyond difficult, so this was to be expected.

I suspended my Facebook account. I went from 100 to 50 friends since 2015 - I did not meet many new people since Josie got sick, understandably. I have very little time to myself; one support worker on Thursdays only and he still needs to call me in case if emergency or when very potent medicines we'd to be dispensed since he would not be allowed to dispense them himself. Add covid to the mix...

I had the impression I was giving news from the Ukrainian war to people I am not sure I really knew anymore, who were just watching ... 

It is not just others, it is also myself, I have become more discerning. "I think there is a point in your healing journey where you stop trying to convince other people to do the right thing, you just observe their choices, understand their character, and decide what you are going to allow in your life." B. Weist, 2021. 

As mentioned in my last post, the last six months would be spent healing for both of us, and this is what we did. We have constructed a conducive environment in our little sustainable house in order to, at least, find the force within.

Our Little House's Facelift: before/after

 We finally managed to transform this little remnant of the XIX's century house into a sustainable and liveable house, in a blend of modern and tradition. 

We can finally can call it home, having it made our own.

NOW

I will show you the front of the house at the end of this post.

BEFORE

 

THE PROCESS

My daughter sanding the floor boards after we rented an heavy duty sanding machine in Bunnings; lot of gaps filling between boards outside, and inside as well...

Gaps in the floor inside had to be remedied

Gap filler for house exterior

Over the years, pieces of wood had infiltrated and grown inside the drain water pipes in the ground, blocking the flow. We had to unclog the mess. The plumber's ingenious device on the right is linked to an infrared camera showing us what is going on inside the pipe through camera insertion.

Gutters had to be attended to as well - here you can see makeshift steel thread holding the gutters on the roof as a temporary fix

Dismantling the old deck was a huge task that I undertook with the son of a neighbour from my previous house that I hired to this purpose. It wasn't easy and involved a lot of trips to the city waste management area.

Mission accomplished, old deck removed!

Now, the retaining walls needed a facelift as well; my son gave us a help with that.

Retaining walls had to be made water resistant, so we put some gravel in a protecting cloth between the wood and the earth.

Deck long pieces of wood delivery - see the crane lifting the boards at an angle with the street where the truck is parked, quite an achievement from the driver.

Now the deck construction, Louis is watching!

New deck foundations

At this stage, I spent three evenings painting the deck railings etc.

Et voilà!

^

Curtains and interior decoration after that...

Bathroom mood lifting frangipani that we collect when we take the dog out for his walk.

Shower curtain holders

Our dog's imprint is quite visible: see the door leash holder with a 'L' for Louis, and a photo of him checking out a bubble (photo taken at a market by a local young lady artist dog-lover)

Everything has to be practically thought about because the house is very small: here is the grocery cupboard.

Wine fridge (but no dishwasher)

I am not showing you our bedrooms since it is a public website, but I am showing you some details. The pink window happened a bit by accident. I asked for a warm orange/brown colour but they were running out of stock for that colour, so I settled for the quirky pink.

Shoe cabinet that my daughter repainted to match the house interior paint colours - 4 pairs each

Coming to term with alopecia and learning to live with it! This head scarf is coming from Paris on the suggestion of a specialist shop-link sent to me by my dear friend there. I hear it is reimbursed by social security in France. Well, we are far from that here.

I keep the dream alive: my picnic basket it sitting on my wardrobe. I will make use of it ... one day.

Now, for the first time in my life, after all the renovations were completed, I put the linen sheet that my paternal grand-mother made for me when I was 18 ... and yeah, the devil is in the detail. She did an amazing job, and I think of her as I can imagine she protects me with her craft when I sleep.

One day, we decided to paint white flower pots after being inspired by some examples at the local florist. A friend of my daughter joined us in the effort.

Peaceful feeling inside

Original features

We had to do something with the poinciana trunk from the tree I had to have removed as the plot was already very crowded with trees as it was. I planted new ones, like Brazilian frangipanis, wattle trees and lemon myrtles. It is now where I put my washing basket almost daily.

FRONT OF THE HOUSE

that I fully repainted myself. My daughter handled the floorboard sanding and I did the varnishing

Louis is our guardian. As a social animal he is, he loves looking at what is going on in the street.

All done now! This photo was taken as I was doing the work in my house in December with my Ninja hairband. I went from hairbands to scarves in three months.

To wrap it up, this is a drawing of our street completed this year by a local artist