This next phase of the treatment gives us flexibility since we can be away from the hospital between noon and 9 PM (21.00) over the next 4 days. This means a couple of days on the town, perhaps an evening out to dinner and a night at the Vega HOTEL with Annica.
We begin our touristic journey by dining at a Kazakhstani restaurant, No 1, recommended by Dr Fedorenko. We walk to the restaurant, well Annica walks and I watch for obstacles on the street – there are many. In fact, you start to see the world in a whole new way – a series of edges, holes and slanting surfaces. In one instance while crossing the street, the wheels get caught on the rails of the tram and I am nearly dumped out into the busy street. I understand the idiom ‘get dumped’ for the first time. Annica is just a beginner driver, so I show patience and realize that was just a literal expression of how she has felt many times - almost wanting to dump me.
After a short walk through the warm evening we arrive at the Kazakhstani restaurant. We are seated outside and the atmosphere is amazing. The waitress speaks pretty good English and has a look of the east. As we go through the extensive menu we stumble upon all kinds of interesting items. Boiled horse anyone? For some reason it would be easier to accept if it was roast or grilled horse, but boiled? I can hear Borat’s voice in my head: “In my country we eats boiled horse at mother-in-law’s funeral. Is nice!”
I need help and ask the waitress about different options but when I
mention the lamb tongue shish kebab she lightens up. I mean how many times in life do you meet someone who gets excited about lamb tongue? And with ox tongue as a staple on the hospital menu I might as well start acclimating myself to all types of tongue. I go with the tongue.
Assessment: Delicious (and some)
With that said we hear some strange noises coming from the back kitchen “aaaaa….aaaa……aaaaa”. Annica thinks it sounds like lambs - but I explain that lambs say “baaaa” . I finish eating my lamb tongue.
This night is spent at the hotel and this means preparing for me to get up to the breakfast buffet on the second floor the next morning. There is no evidence of any elevator up to the restaurant and there is only a long flight of stairs leading up from the lobby. Annica insists that I cannot make it up the stairs (because she knows what's best for me) and we once again return to our old friends at the Vega service desk. Manager anyone?
“Hello my husband has MS and has trouble walking up stairs. We are wondering if there is an elevator?”
“I will check with the manager.”
“Yes, but could you just say whether there is an elevator or not?”
“I will check with the manager.”
“Are you going to check with the manager to see whether there is an elevator or whether we can use the elevator?”
“Please hold” ….”Yes, there is an elevator.”
“Where is it, and can we use it?”
“I will check with the manager.”
You can't help being impressed, this manager apparently knows everything. I do get breakfast, but only after an incredible detour through an underground maze of corridors leading to a service elevator on the other side of the hotel, which I walk (because I do not know what is best for myself). Once up on the floor we walk through endless kitchens and corridors to finally arrive in the restaurant. Exhausted I enjoy the breakfast and skip the elevator and walk down the stairs.
We return to the hospital to get some steroids and head off to downtown Moscow with our newly found friend, and transplant patient, Amanda from Australia. Amanda is a mother of 3 and has recently left her a 7 month-old breast feeding infant to be rid of her MS. She has only mild symptoms, but the earlier you do this treatment the better. BTW isn’t it insane that for people like Amanda, this treatment is the cure and still insurance companies and social insurance will not cover the costs? Instead they pay hundreds of thousands on pharmaceuticals that cost taxpayers millions, cause harmful side effects and in the long-run don’t work. Makes me peeved.
It feels great to share the experience of travelling with someone in the same boat. On top of that Amanda is also a teacher, so we talk…and talk…and …you know talk. Add in a dose of euphoria, a side effect of the steroids, and our babbling is exhausting for my dear wife.
The Metro
Like most big cities travelling on unfamiliar subways can be a nightmare. In Russia you have to add a whole new element into the equation – the acrylic alphabet. In normal cases it is incredibly hard to keep track of unfamiliar names as it is, but with totally different alphabet? Ok, get off here:
Try to remember that one.
In the end it turns out to be quite simple to get around and people are extremely helpful. We do not pay when getting on since I am using the wheelchair, they wave me through. Whenever we get off a subway and there isn’t any escalator someone almost always carries our wheelchair up for us. I just wish there was someone to carry me – the stairs are a killer.
One thing that is incredibly interesting is that sitting on the subway you could be just about anywhere in the world – a world of people staring at their iPhones and electronic devices.
Of course Moscow is known for their subways and they didn’t disappoint. Amazing chandeliers and statues line the waiting platforms and there is not a scrap of paper on the floor. Kind of like New York City subways.
The Red Square
As we exited the subway we are met by Khram Bogoyavleniya Gospodnya church and then things just get better. The Red Square is phenomenal. I have been to a lot of cities around the world but this one really blew me away. We just stood there gazing out over its vastness. Looking out over Saint Basil’s Cathedral and the Kremlin – it was amazing! Everything was so pristine and it was a bit surreal to think that Putin was sitting just on the other side of the walls.
We walk towards Saint Basil’s but there is an emergency. If you are not comfortable with the topic of human excrement do not read further. Although if you are along for my MS ride, then you might as well because chemo is just around the bend and well, we will deal with those details when the time is right.
So we need to find a bathroom to empty my ‘bag’ which is fastened around my lower leg, but there are none in sight. My bag and my bladder are swelling. We swing around the historical and picturesque St. Basil’s with a view over the Moscow River and find some grass in need of watering. Annica squats down, pretends to tie my shoes, which incidentally have no shoelaces, and releases the valve. For those of you not following my discreetness, I am basically taking a leak in front of one of Russia’s most famous sights. God, MS is the best!
I don’t feel too bad though. Ivan the Terrible had the cathedral built in the 1500’s in celebration of the defeat of the Mongols. He was so impressed with the architects work that he had the architect's eyes poked out so that he would never be able reproduce something that would be as beautiful as Saint Basils. Isn’t that terrible? Much worse than watering the grass.
Anyway the cathedral is amazing and we sit outside just watching the people go by while Amanda explores the upper level inaccessible to us wheelies.
As I am staring out over the square I have a vision – I want to land an airplane on the square like Mathias Rust did in 1987. I don’t have an airplane, but I have a wheelchair – and hey, wheelchairs are people too. Anyway Rust claimed that by landing a plane on the Red Square he could build a bridge between the West and the Soviet Union. Now I am building bridges too – connecting the West with Russia, which despite everything you hear in western media really is an amazing place – except for the hotel managers. And don't think because the left wing is damaged that I can't fly - the steroids have me flying anyway.
Quite near the square we grab another excellent and incredibly reasonable meal and Amanda has her first taste of Russian food. Once again I go with organs – this time a chicken liver salad. Some people say 'gross' and prefer to wrap their animal guts in pig intestines put ketchup on them and call them hotdogs, which makes them taste better. I like the real deal. After a nice meal we head back.
After we climb off the subway and onto the tram, we start to catch on to the acrylic alphabet and decipher international words, like bank (Банк), restaurant (рестаурант) and bistro (бизтро). It kind of turns into a competition between me and the ladies. Ok they do not suspect that it is a competition, Oh but it is. I start pulling out some serious deciphers – bibliotek-library, apotek -pharmacy, notery – some words used in Swedish – and I am feeling pretty good. I definitely win, but they are unaware.
Back to the hospital for an 11.00 pm (23.00) and 3.00 am injection.
Kremlin in Izmailovo - The Market
The following day we stick to the market around the Vega hotel. Difficult to describe. First off the Vega hotel was one of the hotels built for the Olympic village from the 1980 games – you know the one the US, but not Sweden, boycotted.
Just outside of the village is some kind of surreal Disney land build of a hodgepodge of Russian architecture perhaps from different time periods or different regions? It was basically a huge flea market with lots of Soviet nostalgia – posters, military attire, antiques; tons of Russian dolls and glass eggs. And I suppose a market would not be complete without items involving thought provoking images of its supreme leader. How about Putin on a coffee mug? Or a poster of Putin fishing without a shirt on? Or my favorite – a T-shirt with a shirtless Putin riding on a grizzly bear? Capitalism has taken hold and they are clearly beating us at our own game! You haven’t seen any topless Trumps on grizzly bear T-shirts now have you? I rest my case.
Overall the market is extremely pleasant and people are so easy to deal with, there is almost no heckling. We buy all kinds of gifts and really enjoy the afternoon. We finish off with some nice coffee – real coffee.
Arbat Street
With two days of freedom left, Annica and I do a trip to the Arbat area which is an amazing pedestrian street. We try to check out the Peter the Great statue on the river but the whole city is under construction and it impossible to get anywhere with a wheelchair. In the end we wander in circles avoiding potholes and edges, have another nice meal and prepare the big plans for our last day – a boat tour and tour of the Kremlin.
Back at the hospital I find out that I will have my catheter put in place the following day, so our plans will have to wait. However, no worries, we will definitely return to Moscow with the kids, if for nothing else other than to say thanks to the country and people that that will change my life. Moscow truly is an amazing place and we definitely want our children to experience it. So the Kremlin will have to wait and it will be interesting to see how the grass is growing on the other side of Saint Basils when we return.
Seeing an amazing city is a great bonus, but I did not come here to be a tourist – I am here to be cured.