26-27 September: From California to Illinois

Author: Mrs A

Location: Chicago

Wednesday: Alaskan Airlines whisked us across the county on an uneventful four hour flight that left and arrived on time.We then made our way into central Chicago via the train, dragging our luggage a few blocks across town to our hotel as the sun began to go down.As we have found on the whole trip, the Australian dollar is really against us, and we’re paying a lot of money for not that much. Our hotel (The Freehand) is centrally located, but the rooms are tiny, with a queen bed squished up against the wall so Mr A has to clamber over me to go to the bathroom!

Size asides, it is in a location from which we can walk everywhere, and was just a couple of blocks from a bistro where we met another of my subglottic stenosis group members for dinner, Anita. It was great to hear about Chicago life from a local’s perspective, enjoyed over a glass or two of Chardonnay.Thursday: It was a fairly early start – I’m suffering from insomnia due to some medicine I’m currently taking, so had been awake since 3.30am! We strolled Chicago’s streets, looking for a café that might serve us a cup of tea. Everything was closed!We wound our way along the Chicago River which passes right through the centre of the city, leading out to Lake Michigan. The city was positively sparkling in the morning sunlight, whispy clouds streaking through the blue sky.The Navy Pier sits on the shore of the lake, an entertainment and conference facility with a large Ferris wheel at its central point. Again, everything was quiet and closed. It felt quite eerie strolling along the immaculately clean pathways, past perfectly manicured landscaping and flowers with hardly another soul around. The lake looks like an endless sea from here, stretching out as far as the eye can see.The city is surrounded by parks and gardens, softening the hard angles of the buildings. Chicago is a good looking city architecturally, every building complimenting its surroundings and neighbours perfectly. Looking back from the serenity of the lake it was hard to imagine the hustle and bustle, the honking horns, the sirens and engine sounds echoing through the skyscrapers.We eventually found our cup of tea, and continued our exploration to the Millennium Park and the art installations there.We did a little shopping during the afternoon, mostly window shopping once we had done our exchange rate calculations and realised it would be cheaper to source products from Australia.

After clocking up just over 15km (9.5 miles) of walking we allowed ourselves an hour’s break before getting ready to head to Buddy Guy’s Legends Blues Club. This has been one of Mark’s dreams for many years as a long time Buddy Guy fan.

We caught the subway across town, and in the club met Jack, cousin and nephew of our surrogate family in Australia. He must have been about 8 or 9 years old when I last saw him in the flesh – thank goodness for the internet allowing us to recognise one another this time! We had a lovely meal with him, and then Mr A and I stayed on to enjoy the show – Laura Rain and the Cesars. Spotting a lady sat alone on the table behind us, Mark invited her to join us. She turned out to be the very lovely Angel, fiancée of the drummer. The star attraction, Laura Rain popped out to say hello as well.It was an entertaining show, fantastic blues guitar, incredible singing and of course great drumming! Before we knew it it was 1am and we were stumbling outside to find a taxi back to the hotel. What a fabulous night and finale to our visit to Chicago.

Day 106 & 107: 12-13 September – Exciting times ahead

Author: Mrs A

12 September

Location: Chicago

Distance walked: 21 km!

Finally managed to get some sleep last night – a total of 8 hours, albeit with a couple of hours wide awake again in the small hours of the morning, just like humans used to do in the Middle Ages! Sunrise was fabulous as always, seen from my 10th floor lake view room. 

I left the hotel before 8am and walked to Dr Gelbard’s hotel in the city, joining him for a walking meeting to the conference centre. We had a good 45 minute walk and chatted about plans for the future, ideas for publicity and stories, and also some advice on my own health situation. He then went off to the conference, and I returned to my day, enthusiastic and optimistic about the direction ahead.

My first port of call was Chicago’s oldest residential house. Dating from 1836, this house was here before the civil war, and has seen a lot of changes. When it was built it would have been surrounded by prairies, whereas now it is dwarfed by tower blocks but still set in stunningly landscaped gardens. It’s a beautiful, peaceful retreat, and a good spot to sit and reflect on the whirlwind of the past few days.

I then wandered in to the city via some of the many sculptures around. Over 100 bronze giants without heads or arms in one part of Grant Park, and water toting video brick walls at the other end in Milennium Park.

After a bite to eat I continued my tour, making my way through more parks and along to the Riverside Walk. The giant silver coffee bean is something everybody mentioned to me, so I had to check it out. It made me laugh how everyone was taking photos of their reflection as though they had never seen it before…

More innovative sculptural art in the form of a picture frame, made from old tyres:

What amazes me is that there is absolutely no graffiti to be seen, despite the large availability of clean concrete walls and underpasses. It’s not like it has been painted over either, it just is absent. It makes for a very attractive and safe feeling city.

The Riverside Walk was all the more interesting having done the architecture tour on Saturday morning. My new perspective from the side of the water meant I could stop and appreciate the buildings. The white building with the clock tower was built by Wrigley – of the chewing gum fame. Did you know that they originally made soap as their primary product? One day they did a special offer with some chewing gum attached to the soap, and it was so popular they completely changed product focus and made a mint (pardon the pun)!

I returned to the hotel for a chilled out evening and another early night to try and catch up. The last thing I want now is to get run down and catch a virus!

13 September

Location: Chicago

Distance walked: 7km

A weather system has been pushed up the country by the aftermath of Hurricane Irma, and Chicago awoke to fog and light rain this morning. Again I had slept fitfully last night, this time worried about Miss Tassie making the five hour flight across a continent on the other side of the world. Once I heard she had landed in Perth safely and was being cuddled, I was able to catch an hour or two’s shut eye, but not much.

I decided to keep today fairly relaxed and headed to the Art Institute of Chicago. The building is surrounded by fabulous landscaped gardens which welcome you to the foreboding building.

The gallery was varied and interesting, and I ended up spending nearly 5 hours wandering around, with a break for lunch. Some of the most inspirational artwork was based on Chicago’s history, plus a wide range of European and Asian art and photography from across the ages.

Some of my favourites include the following:

Newly renovated and fashionable Paris in the 1800s:

Voted the USA’s favourite painting of the early 1900s – showing a farm labourer in a romantic light at a time when rural residents were flocking to cities for work, displaced by modern farming machinery:

Tackling the issue of slavery, painted to bring an intelligent and human light to a slave by an artist who was against the trade in humans:

A favourite I was surprised to see – Edward Hopper’s Nighthawks:

And a vibrant jazz club scene:
I finished off my afternoon at a Chicago fast food institution – right next door to McDonald’s – a small burger joint which probably hasn’t changed in 50 years. They make all their burgers fresh every day, and I must say the one I bought was delicious, and filled the hole my art gallery crab salad definitely failed to fill.

I returned to the hotel for the evening to hopefully have one final good night’s sleep before heading off to the UK tomorrow.

Day 104 & 105: 10-11 September – Doctors in Chicago 

Author: Mrs A

Location: Chicago

Sunday 10 September

Distance walked: 7km

I managed a whole 6 hours sleep on Saturday night, waking around 4am on Sunday morning, bright eyed and bushy tailed. Frustrating. Got to love jet lag eh? It was another stunning blue sky day here in Chicago and I decided to get out there. As I left the hotel I had no plans for my day, but spontaneously decided to join the crowds of Chicago Bears fans heading to Soldier Field to watch them play.

The atmosphere was great, with hundreds of people all in their football shirts walking through the parklands, with the occasional cycle rickshaw bombing past playing their varying theme music. I was tempted to go in and watch, but having absolutely no idea about what I was potentially going to, decided to give it a miss.

Instead I turned and took a look inside the Field Museum.

This is Chicago’s Natural History Museum, famous for Sue the largest and most complete (90%) Tyrannosaurus rex skeleton currently known. It has a large collection of taxidermied animals and birds from the early 1900s – I had a quick look around this but found it quite eerie and uncomfortable, somewhat like walking through a zoo where all the animals have died. It gave an interesting insight in the world of the 18 and 1900s where collectors would bring animals back from around the globe, many of these creatures are now extinct. One sad tale which had photographic evidence was that of the passenger pigeon. They used to flock in their billions. Yes, billions! One flock could take 17 hours to fly past. Now there is not one bird left alive.

An interesting exhibition was that following the continent of North and South America in terms of civilisation from the Ice Age onwards. A fascinating study in anthropology, looking at human life as it became more sophisticated, changing from hunter-gathering, to farming, and gradually building up a society with hierarchy and buildings (such as the Aztecs and Mayans). This was more my cup of tea.

My next visit within the museum was to collections usually not seen by visitors. By now I was concerned it was going to be more stuffed animals, but I was relieved to see that although dead, the animals were preserved for scientific purposes. The collections are constantly being revisited and often reveal surprises. One recent look at a collection of thousands of bugs collected on a night during the 1980s revealed a totally new species of centipede, and testing of seagulls collected at the turn of the 1900s and compared with seagulls of 2017, revealed that today’s ocean scavengers are 4,500% more polluted than their predecessors – predominantly with heavy metals such as mercury. It makes you wonder whether the world can ever recover from such damage.

I finished up with an exhibition which demonstrated how the museum’s scientists spend their days conducting research to help create a more sustainable world. Finishing on a note of hope before I strolled back to the hotel for an afternoon nap.

I caught a bus along into the city to meet some of my Vanderbilt University team colleagues for dinner. I had the fortune to have a lovely bus driver who allowed me to pay whatever coins I had (about 80 cents!) into the ticket machine as I had no change and the machine didn’t give any. Very kind.

It was fabulous to meet Cheryl Kinnard in the flesh – she and I have been emailing one another for about two years on an almost daily basis as I recruit members for the research study. There were also three patients there. Shaunda, Kesi and Robin were recruited as patient partners by their doctors. It’s not very often I get to meet another ISGS sufferer face to face – I had forgotten how good it is to be able to share experiences with people who truly understand. Dr Alex Gelbard also joined us for dinner – he’s the leader of the grant research program, and who recruited me back in 2014.

Monday 11 September (9/11)

Distance walked: 8km

After a fun evening out I had a terrible night’s sleep. I woke up after only two hours, and lay in bed for the next three with my mind whirring and unable to still. Eventually I got up around 4am and started refining my presentation to the North American Airway Collaborative.

As a recap for those who have forgotten and an update for those who don’t know, the North American Airway Collaborative is a group of medical institutions across the USA, UK and Australia who have joined together to conduct a shared research project into a rare disease, idiopathic subglottic stenosis. The disease affects predominantly women (around 98%) and involves scar tissue appearing in the trachea (airway) and gradually closing up the passage. Nobody knows why this happens, and there are a wide variety of treatments, all with varying success rates.

I was invited to join the team at Vanderbilt University back in 2014, and together we submitted an application for a rare disease grant, which we won. Since then we have been busy enrolling patients into the longitudinal study via their doctors, and via the Living With Idiopathic Subglottic Stenosis Facebook Group I manage.

The aim of today’s meeting was to offer some interim results to the participating doctors, some highlights of what is being found in the research. The presentation was being held in the basement of a gastropub called The Gage. I put some finishing touches to my presentation and chatted to the two key doctors involved in the research, Alex Gelbard and David Francis about how it should all proceed. Before long doctors began arriving and mingling over finger food and cold beverages. It was amazing how many I knew from over the years – I have emailed most of these people telling them about the support group I set up and sharing research I have conducted. Some even asked for photos with me, as if I was the celebrity, rather than them!

The event was professionally filmed and photographed, and all attendees interviewed to capture their thoughts about the importance of the research. A really well organised occasion.

I was really pleased Dave Veivers, my surgeon from Sydney, also made the event, as he got a mention in my presentation! A photo below with two of the USA doctors, Robert Lorenz and Paul Bryson who treat a large number of patients with this condition in Cleveland, Ohio and considered experts in the area.

I think all went well – I got some lovely emails and messages after the event:

“…Thank you so much for making the effort to come over. It was truly inspirational.” Dr Robert Lorenz, Cleveland Clinic, Ohio

“It was a pleasure to meet you, thank you very much for coming all the way from Australia to Chicago to present your work on iSGS with your social media group…” Dr Marshall Smith, University of Utah

My afternoon was spent with the Vanderbilt doctors, drinking rosé wine and eating delicious oysters in a nearby bar, talking about the opportunities ahead. The grant finishes at the end of next year, with final results to be presented next September 2018 in Atlanta. Everyone has urged me to attend that – so I guess that means I will be back! The challenge is to find funding to continue the research beyond 2018. Now we have this fabulous database of 1,000 patients participating in research, it would be terrible if all that learning stopped next year.

The evening concluded with a delicious Italian meal with Cheryl, Kesi and Shaunda, and in bed asleep by 8.30pm!

Day 102 & 103: 8-9 September – Arriving in the Windy City (no wind!) 

Author: Mrs A

From: Sydney, Australia

To: Chicago, USA

Distance flown: 15,100km (8 Sept)

Time: 26 hours door to door

Distance walked: 15.2km (9 Sept – Mr A’s birthday)

The 8th September went on and on, as I left Forestville at 9am and arrived at my hotel at 7pm the same day. I took the longest non-stop flight in the world, the 13,800km QF7 to Dallas, then rushed through the airport to get to my connection to Chicago, catching it by the skin of my teeth. Unfortunately my luggage didn’t have the same luck, and arrived sometime during the night.

The USA is in a bit of a frenzy with Hurricane Irma about to hit the whole state of Florida and everyone ordered to evacuate. Chicago airport had multiple stressed looking families with piles of luggage who have escaped the danger zone, relieved to be safe while wondering what they will end up going home to after the storm has passed. There is little else on the news programmes.

Chicago meanwhile is calm and safe with no storms forecast here. Once I had checked in, had a long hot shower, and then put my travelling clothes back on (still no luggage at this point), I headed out to explore, despite it being dark out there! My hotel is very centrally located, opposite Grant Park and Lake Michigan. Crossing the road my first sight is an 8 piece Latino band playing salsa with around 100 people wriggling their hips on the temporary dance floor. A fabulous atmosphere, all free, with many local people sitting around with chairs and picnics enjoying the show. 

I continued my tour, heading over to the Buckingham Fountain – stunningly lit up agains the backdrop of the city. I was pleased I took my camera with me, and I joined many other photographers taking photos of the spectacle. Behind the fountain was the Windy City Wine Festival kicking off – I wasn’t game to go for a solo tasting after being awake for nearly 30 hours though!

Saturday morning began early, with jet lag ensuring sleep was totally absent. My luggage had arrived so I could finally change clothes and freshen up properly before heading out to explore in daylight. I headed across the park to the lake and took the lakeside walk along to the Navy Pier. Here I booked myself on an Archtecture Boat Tour of Chicago.

Chicago has a river running right through the centre of the city, in the past polluted and unpleasant, but in the past thirty years has been cleaned up, and more recently a riverside walk opened up and sustainable plantings to encourage the return of native fish. The boat travelled along the three arms of the river, with a self professed architecure geek giving an interesting and humourous commentary about the buildings around us. I learned so much, in particular how to see the buildings as sculptures with a historical context. The 75 minute tour went quickly and it was soon time for lunch.

After a bite to eat it was on with the exploring, walking through more parks on my way to the Museum of Contemporary Art. There are 570 parks in Chicago, meaning that you are never far away from a patch of green and trees. It makes for a very attractive city.

At the MCA I paid my entry and went to see the primary exhibition of paintings and prints by Japanese Takeshita Murakami. Some interesting artworks, many based on Anime and Japanese folk law – I think I might have found the next ‘impossible’ jigsaw for Donna and Andy!

By the time I left the gallery I really was feeling the effects of only 4 hours sleep since Thursday night, and began to head back to the hotel…diverting briefly to do a little shopping and get a local SIM card. As much as I hoped I could do without an active phone, I am finding there is very little working free wi-fi and it is challenging to look anything up offline.

Back at the hotel by 6pm I had a 40 minute nap, then went to a local cafe for some food.  I really like Chicago. It feels quite like Sydney – very international, welcoming, young, vibrant, clean and safe. I chatted to a lady at the cafe while I was waiting for my food. She had lived here for 8 years and gave me some good tips and ideas for tomorrow. So much to do! 

But first – sleep…