The trip to New York started with fear in the stomach about the possibility of force-landing in the event of a long seizure. Fear definitely not unfounded, since Day-1, we were at the Royal Brisbane Emergency Room following a 1-hour+ seizure.
My hairdresser was reassuring: 'If you do an emergency landing and have to speak to the press, you will look good' ;(
Hum...
Well, the flight went marvellously well! ...
(except, perhaps, that we had to redirect the luggages to Singapore last minute because my daughter realised she had left her evening meds in her suitcase, but that is normal life)
Finally! ... we are off, we are going there ...
We stopped over for a night in Singapore at the Crown Plaza Hotel a few minutes walk from the terminal. It was such a relaxing place with a warm water swimming pool constructed in a maze of greenery alleys where you could play hide and seek, or let yourself be transported.
Very comfortable indeed.
Changi Airport butterflies' garden ... while you wait for your flight. Here again, it did not go totally smooth with a purse left in the plane - we found it in lost property at the airport. How about that!
In the late afternoon of the fifteenth of August, we landed in New York. The plane had flown from the Pacific to the Atlantic ocean, and in a last manoeuvre, it elegantly engaged landing from the Atlantic Ocean side... for some reasons, I liked that last little twist.
Our view from the plane. Like a promise. The New World, a New Life after the surgery, perhaps...
We left this world of comfort and luxury as soon as we landed.
In fact, we were called back on earth two hours before landing when we received an email (you can do that in business class but not sure it makes the flight more enjoyable) from the hospital admin saying that we needed a letter from a GP authorising the surgery, as per US protocol. We thought the surgeon would do it, as is the case in Australia, so we were a bit taken aback, and very worried we may not get one at all since the GP had not signed the documents to allow the flight, or not one in time. We emailed Josie's GP immediately.
NYC immigration lanes were interminable and we noticed that no one was respecting minimum covid space. Looked like a death line to us, the immuno-compromised. I had some mask shields in my bag in anticipation, since covid pre-surgery is a 'no, no...' but at the end, I did not need to use them since we were wheeled by a street-wise Spanish speaking woman - the first language we heard on arrival - who claimed that my daughter was not feeling well, and who got us through immigration and taxi lanes in front of everyone un-shamefully. I think she wanted to finish her shift and go home early from what my daughter understood ... we may never know.
JFK airport plastic wheelchair were photogenic but appalling (tape-cul). Then, a yellow-taxi with no suspension whatsoever took us to Long Island - Rockville Village as they call this area.
Josie was now really feeling unwell by the time we arrived at the hotel.
Rockville was not quite how I had imagined Long Island. It was more like Pantin... :), with a feel of the 50s, quite hard to describe. I had the impression we had gone back in time through a time capsule. The area had been hit hard by covid, it seemed, and many shops were run down or vacant.
Fortunately, the hotel that had been recommended by the surgeon office was very comfortable, 20mn walk to the hospital which is located slightly more up north in the island, with a supermarket and a CVS chemist around the corner.
We tried to eat like the locals.
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Local Bakery opposite Rockville Train Station |
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| CBD Oil shops were opening everywhere |
We visited Long Beach, the day before the surgery. I liked the thought of Europe being on the other side, it did not seem as far as from Australia, relatively.
The surgeon office was north of Long Island, in Great Neck area, a more sophisticated part of LI.
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| Neurosurgeon Office |
The hospital was quite impressive for a Community Hospital.
We did not manage to get a letter from our GP who had been cautious of the legal repercussions, but a local General Practitioner assessed the situation and with full understanding of the legal implications for her (that would be different for her, it seemed); she was able to produce the document. She recommended a chest Xray that was organised immediately. We also had to meet a recommended neurologist and neuro psychologist who were to produce a report to the neurosurgeon each.
We were going to make it on time.
23rd of September - Surgery Day
Below is the hall where I waited and waited for the surgery to end ... during ten long hours. There was happiness (we finally managed to do it) and fear (as you can imagine).
The surgery was supposed to last 4-7h, but the scans had not revealed the extent of the work to be carried out, neither how urgent the surgery was. We arrived very early in the morning, and I waited to see her, but it was not possible that day: I would have to wait for another 24h.
The surgeon came at the end of the surgery. He was very exhausted and explained what he did. In the meanwhile, the plastic surgeon was closing the opening.
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| Salle des Pas Perdus |
Walking back to the hotel alone that evening. Another sleepless night.
In the morning, I took a different path;
As I was looking at these sunflowers in the wind, I was imagining my daughter in her own life turmoil
I was highly receptive, in a state of acute sensitivity, I could notice everything around me.
Someone had laid these stones in their garden...
I got some discreet flowers for the room where she would be sent at 3pm on day 2.
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and brought some waffle my daughter likes that I made in our hotel breakfast area on day 2. |
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Hospital Kite |
She had to stay in the hospital longer than anticipated after such a long surgery, but she recovered well. The surgery had been successful. It was not going to take the pain away entirely, as we knew from the start, but her quality of life would hopefully improve as a result, and further deterioration would be prevented.
I also met a wonderful family whose daughter had been medically-air-lifted from Arizona, the state where they lived. I first noticed their child in the recovery room where I had been granted a special permission after 24h of Josie being there on the second day. Her beautiful eyes fixing the ceiling, and her age was an immediate cue to me as to her predicament. She was 22.
I could relate to their trauma dealing with this rare condition, the lack of understanding in the community, the emergency services, set-backs, and we talked about these things that not many people can truly relate to.
Their pain was palpable, their daughter had arrived without being able to move a finger, and in a sensory shutdown, she could not hear, could not eat much. Sometimes, one of them had to sleep in the room, but they were in there as a team, very proactive and mindful, and this was beautiful. There are definitely some good men out there. One day, they even brought me a cup of camomile tea. We shared the same emotional support dog, Warwick who came for a few visits, once with a birthday hat on for their daughter's special day. They were there for the long-haul for multiple surgeries. We'll remain friends on FB, at least... who knows... a wonderful meeting, they brought hope to my heart for humanity in the oddest of places.
I had to move the flight at a later date to give my daughter a chance to recover and be sufficiently mobile to handle an airport hall and immigration queues. Singapore airline were asking me 6,450 Aud! for the change to the booking, and could not find seats before October. To add to the stress, my phone let me down (motherboard) so I had to find a new one in a hurry, and the hotel had treated my debit card like a credit card, so the amounts had been debited twice. It was hard to sort out this series of unfortunate events at once. Finding the heavy duty pain-medicines was not easy either, and led to a bit of drama, but, again, it got sorted out at the end with the help of the surgeon's P.A.
A few days after my daughter came back, we had to move because of a marriage taking place in the hotel. I checked Airbnb but I could not find any suitable nor reasonably priced accommodation. We moved to the other hotel that had been recommended by the surgery (more expensive one, but with a discount of 33%). There was not much choice. The hotels in the CBD were hosting the UN General Assembly meeting and all the prices had tripled. The hotel I had found prior to us coming had gone from 200 to 600 USD a night!! I read in the reviews that CBD hotels customers were complaining with long delays waiting for the lifts in high rise building ... well, that was not going to be a good idea for us in case of emergency or when she is in pain and tired. Staying in the vicinity of the hospital was also a major criteria.
Moving was not a light affair, we now had a 'transporter' and a soft pillow. Fortunately, the Uber driver was a big guy who did not think twice about lifting it all in the car.
It was a fortunate move at the end for a second phase of the recovery. The next hotel was slightly further from the hospital, but only 20mn, really nice with a kitchenet, a heated pool and a nice shopping centre of wheel-chair reachable distance
and had funny sponges - I bought a few at the local supermarket for my friends and their kids.
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Hotel-Home Cooking (Bison meat balls ... for iron) and finally (because I felt safe for the first time in a long time that we were not going to end up again in emergencies), a glass of wine. |
After one week of progress and no sign of seizure/dizziness,
we ventured in beautiful New York City.
It was so lively, not unlike Paris, except that for the dimension of the buildings. There were even people on the terraces in the street enjoying the end of the summer.
Views from the Metropolitan Museum of Arts 5th or 6th Floor Terrace
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Metropolitan Museum of Arts Fountains |
Back in the street, we had a hot dog and my daughter recognised the owner from Street Vendors Netflix show. Apparently, he had lost all of his kiosks during the pandemic, except for that one in front of the Met.
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NY Hot Dog Kiosk    Then, we went for a fashion discovery tour     with the piece of resistance ... in the Met (Kimono exhibition) where I would go for inspiration if I were a dress designer artist.  Then, we looked all around, as we walked with our eyes mesmerised by the sky-scrappers  and as we stumbled on iconic or provocative sites...   Now back to Long Island... on our doorsteps. This area used to be/still is (?) called the Gold Coast, like our Gold Coast south of Brisbane. It used to be the place where New Yorkers had their beach house for the summer... until they were able to commute from this paradise and it became more suburban living. It is very leafy compared to places like Queens or Brooklyn, and slightly more led back and relaxed than New York. We did not hire a car, but were using Uber when needed. Not sure how this happened, since we had chosen the economic category, but we ended up having a ride in a Tesla once.  This is one of the great mansions who hosted extravagant lavish parties in Great Neck area in the 1920s and which inspired Fitzgerald when he wrote the Great Gasby novel, a must-read, with timeless accounts about human nature, and a jewel of English language which enlarged my vocabulary (with Google on hands).  The house had 120+ rooms to host their guests, and in order for the house to have sea views, the owner, Otto Kahn, had a hill man made under the house before its construction. He would commute to the City by boat where he had his principal residence, an apartment.  |
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Amazing to see pictures depicting simple life inside of this castle, as if it was what they were dreaming of. Today, the mansion is hosting marriages. I had never seen so many table clothes so neatly ironed and organised. Beautiful preparation work. |
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Charly Chaplin had been a friend and host. A room is dedicated to him. |
You can see Otto Kahn on his left.
Today, we are having my daughter's stitches takes out by the plastic surgeon and in three days time, we'll fly off! We haven't got the flight clearance document yet, the surgeon office P.A. advised that the plastic surgeon should be able to produce it 🤞.
Although the last few days almost felt like a holiday, and I can already see that the promise is going to be fulfilled, I will feel only and truly relaxed when the plane will touch the ground.
After that, I will have to find a home ... (detail)
I 💗 NYC
