Final Moments at Pirogov and Journey to Airport
Anguish. That is what I have always felt before traveling anywhere and this feeling is just exasperated with MS. This is not rational, just a feeling of not being totally prepared. So to be fully prepared this time, I set the alarm for 5 am, even though I have not slept past 5 a single time in the past month – I still want to be sure. I also want to shower, do a final alcohol bath and meditate before the taxi arrives at 6. MMMM alcohol bath.
Of course that Murphy bastard shows up you know, and I sleep until the exact moment when the alarm goes off; I am exhausted. I get up immediately and say goodbye to the excellent giant pillows and comforter that I have used over the past month. The extra size pillows will be on my purchase list when I get home.
By the time I have rubbed the vodka on my body for the last time and get dressed it is 5.30 and a last meditation is out of the question. Despite leaving behind most of the leftover food I have dragged to Russia along with me, when I get everything in the suitcase I am still over the 20 kg limit and have to shift things over to my carryon, which now weighs a ton.
Once everything is in order and I have all tickets, money and passport securely around my neck it is already 6 and I need to get my suitcase, carryon and wheelchair down the long corridor to the elevator. The morning staff is nowhere to be found and I start to get stressed. I calmly go into the personnel room smiling and find two staff members but they don’t seem to understand when I ask for help. Then my expression changes and I start waving frantically in desperation, but they seem to think I am trying out some new dance or something and start clapping. Under stress my world has shrunk and I am not ‘dancing’ at all. Then they just sit and stare at me like I’m nuts. Finally I almost yell “not dance! taxi! taxi!” and they get it. We rush down the corridor and the driver is already waiting. It is already 6.10!
Then I walk through the corridors of my own stress down to the taxi. Outside it is warm. Heat is not a friend of MS generally and it feels as if all the progress I have made over the past few weeks has quickly disappeared. Once in the taxi I collapse, exhausted and stressed, beating myself up for not being better prepared. A relaxing morning waiting in the lounge for the taxi driver drinking morning tea would have been a much better start. To calm me the taxi driver, who speaks English, informs me that the taxi trip, which had taken one hour when we arrived, will only take a half hour. Taking some deep breaths and feel calmer.
At this point there is a split second where I almost become my Scandanavian self and consider just enjoying a quiet ride gathering energy for the trip. Instead I decide to small talk with the driver. I tell him how beautiful Moscow is and how much I have enjoyed my stay in Russia, how friendly the people have been, how service minded the hospital staff is, how good the food has been. “Even the hospital food?” he asks. Despite everything I have heard about the food at the Pirogov hospital, and the consensus on hospital food in general, yes even the hospital food has been good – especially the ox tongue. Then comes his second question, which he douses on me like an early morning vodka bath:
“What do you hate about Russia?”
What do I hate about it? Don't know if I hate anything. Although I have gotten used to odd questions in my years abroad, I have never quite heard a question like this. Especially as an icebreaker. In Africa, for example, I got questions like:
“Where are you from?”
“The States.”
“Ahhh. America. How is it in America?”
In the Middle East:
“Hello my friend. Where are you from?”
“Canada.”
“You want to buy rug? Special price for you my friend.“
Each of these questions are equally vexing, but after some time in the respective places you get so used to them that you come up with clever responses - mostly for your own entertainment. In Africa I would answer in a dramatic and friendly manner:
“Ahhh Yes America! Why...America is as cool as the winds of Kilimanjaro and tastes better than 10 bowls of mashed casava!”
This would unfailingly make their eyes become dilated and unfocused suggesting the person had become equally as vexed as I am now.
Or in the Middle East I would remain a step ahead and anticipate all the follow up questions that I would inevitably be bombarded with:
“Is the rug made from real camel hair? The guy down the street said that he is the only one selling rugs made from real camel hair. So sorry, I don’t want to buy a carpet not made from camel hair. BTW, I don’t want to buy a shisha pipe, perfume from your brother’s shop and I do not want to ride a camel or drink tea. I do not like green eggs and ham.”
“You want a taxi?”
“Damn. Forgot about that one.”
The point is, I don’t have a sensible response to what I ‘hate’ about Russia, but nonetheless feel obliged to answer, if for nothing else other than to prepare myself for future dousings. What can be said that won’t get me in trouble? If the spies that nearly trapped me has taught me nothing, it has taught me to keep these kind of thoughts to myself - take no risks with only 25 minutes left until the airport.
But as swift as the winds of Kilimanjaro an answer comes to me: “I hate the Russian alphabet.” He laughs and seems satisfied. And I do – I hate it with a passion. Death to the Cyrillic alphabet I say. Eradicate it from the face of the earth. That is the best I can come up with anyway and I pray that he does not ask me 'why' I hate it.
The driver is actually quite talkative and the conversation is quite interesting as we talk about the Russian track team being banned from the Olympics, doping in different sports, his trips abroad to Greece and Spain. I fill in my stories and opinions and the conversation flows along.
Anguish: My Unfounded Hang Ups
This conversation is good for me because it suppresses the anguish I generally have about travelling to airports. I paint horrible pictures of things, riduculous things, that can go wrong before and after check in. It is absurd and not logical. For example it would be logical to be worried about traffic accidents on the way to the airport, since traffic is treacherous in Moscow. Riding on the trams we have experienced delays nearly every other day due to accidents. Logically, I should be terrified of being in an accident, instead, I am concerned about my passport and ticket, which is stowed securely away in a pouch hanging around my neck. I compulsively check my pouch over and over making certain it is all still there.
Actually repeatedly checking for my valuables is logical in a way, especially if you are a seeker like me. By seeker I mean one who is constantly seeking things that have been misplaced. If you are also a 'seeker of things' then you will recognize an experience that occurs frequently enough to be classified as a supernatural phenomenon.
Whether searching for keys, papers or wallet, you look in all the common places, drawers, pockets, under piles of papers, in the car etc… until you exhaust all the possibilities. Then you start the cycle again, looking in the exact same places over and over. Amazingly the object mystically appears in a place you have already checked a hundred times. So why can’t the opposite happen with a passport or ticket in your travel pouch? Imagine you check your valuables over and over before and during your journey only to find that when it is time to check in at the airport your tickets have mystically disappeared just as lost items appear. This could happen.
I also have anguish about how I will get from the taxi to the check in. What if the driver just leaves me outside and I have to transport everything on my own? Last but not least is the security check. Will I get through with all of my things. What will happen my urine pouch if the pat me down?
The Airport
As it turns out, we arrive 10 minutes before 7, I quickly climb into the wheel chair, pull the suitcase, carry my food and backpack on my lap, and the driver pushes me along swiftly to the check-in queues. With my VIP-wheels, we go ahead of everyone and everything is finished by 7 am - stress-free. Now a three and a half hour wait until my flight leaves. Anguish and stress all for nothing.
We are shown to a waiting area and they inform us that special services will be with us shortly. Shortly. What does that mean anyway? I should know better by now that words like ‘shortly’ are so relative to context and place. However, I decide to get myself in order
and move the food I have over to my backpack which is already over stuffed; this entails throwing out some extra amenities such as plastic boxes and...water bottles. Yes a huge 2 liter bottle of water – well you can’t bring it through the security check I reason. I also could not know ‘shortly’ would mean an hour and a half. So I sit in a corner in the stuffy airport air behind a suffocating mask that smells of damp cloth as the moisture slowly clogs the cloths air passage ways and wear a warm hoody that has not fit in my bag – all of which adds to my ever increasing thirst. Why have I thrown out the water? I consider fishing it out of the garbage or finding a place to buy a bottle, but keep thinking they will come at any minute. Finally they come. Actually, the taxi driver, hired by the hospital, continues the great service and waits for over an hour with me until special service arrives.
The Security Check
The security check looms over me. First off I am worried that the food I am carrying will not be allowed through. Again, totally illogical. Even if I can’t find food to eat that fits my strict diet, who cares? I have just fasted for three days and besides have no appetite - I can make it home to Sweden on water alone. But this is not the real issue. What has really hung over me is the bag filled with urine fastened to my lower leg. What happens when they pat me down and detect a liquid substance that I am ‘smuggling’ onto the flight? You know how they are about liquids these days.
My nightmare vision:
"What is in the bag sir?"
"Uhhmmm…"
"You are not allowed to pass security with this amount of liquids. Do you have a license to carry?"
"No."
"Please stand spread your legs and place your hands against the wall. Bring in the dogs!"
The dogs are violently rushed in to inspect, get a whiff of the ammonia and start barking wildly. Abruptly I turn towards the security in a pleading manner. The guards, however, misunderstand my abruptness, panic and open fire. A bullet pierces the bag puncturing it, essentially ruining my flight home. With no bag I will spend the whole trip running (ha ha! Just a vision remember) back and forth to the bathroom. To my relief, none of this happens. In fact, the security is a breeze and the anguish of what could have gone wrong is once again, unnecessary.
Waiting For the Flight
The man pushing me is very friendly and seems to know a few words in English, however when we get to the bottom floor, I am nodding off and he kind of leaves me in no man’s land between 3 different gates. The problem is, I can’t read the destinations - all destinations are written in Cyrillic – I do hate that alphabet after all.
My mouth is so dry that it feels like it is coated with camel hair – real camel hair - and I summon an airport staff member and mumble ‘vody’ – water, one of the few words I know in Russian. He directs me to Burger King, the only place to buy anything on the floor.
Feeling anguish and finding stress in every situation has reverted me
back to my pre-transplant mindset. Left all alone I feel helpless,
exhausted and thirsty. Then it strikes me that I have been walking extremely well as of late and suddenly stand up and effortlessly stroll over to BK and buy some water.
I feel like the wheelchair ridden Andy in Little Britain, who has taken
advantage of all the perks of sitting in a wheelchair – passing through all of the queues and suddenly rises from his chair and strolls over to the cashier.
I bring my things over to a table and pull out the remaining food that I have packed. With my blue mask, I must look like some kind of parodic surgeon meticulously sterilizing my hands while using a plastic knife as a scalpel to slice a banana to meticulously place on my seed crisp bread. As I am digging through my bag I remember the expensive masks I have purchased for the flight - you know, the ones you can actually breathe in. Throwing away my blue smelly moist one makes all the difference. Who would of thought that breathing could make such a difference. A little air, water and food and I feel a whole lot better. Just one more more basic need to fulfill – sleep.
As I sit back in my chair I notice that right behind me, is a large screen with a legible alphabet and my gate is right in front of me. I sleep.
When it is time to board I get a new wheelchair experience. As special service wheels me out towards the bus that will take us out to the plane I start to stand up and board the bus, but they signal me to remain seated. It is not a problem to climb the stairs to a plane but curiosity grips me and I start to wonder how they will get me up into the plane. It is as if Lou, from Little Britain, is my subconscious and whispers in my ear:
“Ride on the bus instead Andy.”
Pointing to a large iron container on wheels I demand:
“I want to ride on that one.”
“But you don’t like riding in closed dark containers.”
“Yeah I know. I want to ride on that one.”
I point again and wipe the slobber from my chin.
So Lou gives in, as he does, and they roll me over to what appears to be the back of a lorry-like- trailer. On the back is a lift, like on the back of a UPS delivery truck used to load and unload heavy objects. This system, however, does not feel as modern as the rest of the Moscow airport that I have experienced thus far. First excellent personal assistance, now a package being lifted onto the back of a UPS delivery truck; stuffed into a large windowless container on wheels. Once loaded and moving the ‘container’ appears to be fastened to what sounds like a tractor that pulls us towards our destination, which I envision to be Siberia. I turn to my subconscious friend Lou: “I don’t like it.”
Upon arrival the container is lifted and the front opens up slightly above the airplane portals and then the box starts to rapidly tilt forward and dumps us out into the plane. It feels like that is what’s going to happen anyway. Once on level with the airplane portals, all of the staff starts to offer me assistance but I leap up and move past them and walk swiftly down the aisle to my seat, as Andy does.
What is amazing here is how quickly you psychologically resign yourself to be in a wheelchair, which is why I have avoided it until this trip. When you sit in a wheelchair, people treat you differently, like you are weak and helpless and it is easier than you think to fall into the roll and forget what you are capable of. Although I am extremely tired on this day I am as capable as I have been for over a year, which I realize as I walk down the aisle.
As I sit in my seat I think about the Jamie Fox quote: "What's on the other side of fear? Nothing". What's on the other side of anguish? Nothing. Any difficulties I have experienced at the airport have been caused by unfounded fears built up in my mind. The service from hospital to airplane has been excellent and it really could not have gone any more smoothly. I will have to actually try and live by the quotes that I use.
The Flight - One Final Revelation
As soon as we are up in the air I wake up because I feel a swelling bulge on my leg and need to empty my magical bag. This little miracle will limit me to one trip to the toilette during the flight. It is not really getting back and forth that is the problem, it is all the eyes you feel on you as you walk down the aisle. A tall skinny baldheaded man with a
strange sci-fi mask and head-covering wobbling towards you gets attention. I realize that smiling can send signals that all is well: “Hey I am not a leper sci-fi alien.” - the mask hides my smile, however. So before embarking on the journey, I practice smiling with my eyes, but it proves too difficult. Instead I decide to have some fun, stare straight ahead towards my destination with a glaze in my eyes and whisper as if I am having a conversation with myself: “If you don’t make it again I will be angry at you. It’s not my fault! It’s this highly contagious disease I am infected with.” Continuing the dialogue until I reach the bathroom, everyone clears out of the way and I skip the lines once again.
When I return to my seat I immediately feel the urge to go again. And this poses a problem. After emptying the pouch, I can never remember if I have closed the valve or not. Of course it is 50/50, but in my experience it is like plugging in my iPhone 4 – defying all probability, the charger never fits in the slot on the first try. Placing my hand near the valve I release and wait. Initially nothing comes and just as I am about to sit up it starts to spray out onto the floor. Only a small amount escapes though and my neighbor barely notices. Barely.
With an hour to go and sleep not likely, I reach for a book I have been wanting to read for some time “The 4 Hour Workweek” by Timothy Ferris. I have been recommended this book by an old friend, Robert K, that I have reconnected with as a result of this whole HSCT journey. Immediately it grips me and is the perfect conclusion to all of the thoughts I have been having over the past month. To summarize briefly, he defines wealth in a way that describes perfectly how I used to live my life 20 plus years ago.
Everyone wants to be wealthy, he claims, but the real question is what you want to do with your wealth. What is the point of wealth if you are working 12 hours a day 7 days a week saving your money for some future date that may never come – in fact almost never does? The question is why you want wealth and what you want to do with it - NOW.
The 12 hour a day worker describes my obsession with fighting MS. In my case though 'wealth' is 'health' though. By ‘fighting’, I have shrunk my horrizons and have not considered why I want my health and what I actually want to do with the health I have NOW. What is the point of health that may or may not come if I don't have a plan for living my life NOW? To give her all the credit she deserves, my wife has been saying this all along. Ok she is always right – I said it. But the fact that Tim Ferris has also been a world champion in both Chinese kick boxing and Tango is what convinces me to listen – a fighting dancer!
Flashing back, to my 20’s I knew exactly what I wanted and made sure the little wealth that I had enabled me to put on a backpack and go anywhere I wanted. So what do I want now? That is what I need to figure out.
As we start landing I am dozing off again and feel exhausted. Beating myself up over the fact that I couldn’t get my things together a little earlier and gotten the proper rest that I needed. So many times I have envisioned this moment where I walk effortlessly out of customs to greet Annica. I am disappointed in myself.
Back in Sweden
As the plane comes to a stop and connects to the tunnel leading into the airport, they tell me to wait until all the other passengers have gotten off. Instead I thank them and leap up and walk off the plane first. And suddenly I am euphoric – I am going to attain the vision.
My chair has not arrived yet and they offer me a chair to sit down in while waiting, but I tell them I am feeling so good that I want to stand and just start babbling about everything that I have been through over the past month. The personnel is incredibly friendly and are excited about what I tell them. My wheelchair comes, and a man, Kent, pushes me towards the baggage claim.
Syncronicity: One Last Case
Even if it's a long shot, I go for one more coincidence. I ask Kent if he knows a friend of mine, Scott, who works in the aviation tower. No he doesn’t. It is a large airport, but it happens all the time that people ask, he tells me.
Waiting for my bag I start talking with one of his colleagues about sports. She mentions that she has played for a basketball team in Sweden. This leads Kent to mention that he has played American football when he was young. “Are you kidding?” I ask. Despite its increased popularity, football is still a relatively unusual sport in Sweden. Which team has he played for would you guess? Well the Uppsala 86ers, of course; one of the two teams that I have coached in Sweden. Then we start naming names and find at least 10 people that we both know. BTW, the guy in the tower, Scott, is also a former 86er, who Kent would definitely know in a football context - but I forget to mention it again.
The bag arrives and we make our way through the grueling Swedish customs which has a reputation for being the "Checkpoint Charlie" of the post Cold War era. How tough is it? I once saw this custom’s official standing by the custom’s booth Just standing there...like...he actually might stop someone. Otherwise I have never seen a custom’s official at this airport. At least I have no anguish before going through customs in Sweden.
As we make our way towards the exit, I stand up, throw down my mask and walk the remaining distance out into the terminal – just as I have envisioned it. Annica is right outside the door and we embrace and both break down. I am overjoyed at the same time as the tears are streaming down my face. I feel elated to be back in Sweden, which more than ever, feels like home.
The Final Stretch - Coming Home
We jump into the car and begin the 4 hour drive home. To protect me for the entire journey home, Annica insists on wearing the white masks with filters. The combination of her appearance, fatigue and the fact that she finds it difficult to breathe makes it difficult for her to be social but I have a lot to say and fill up the four hours, which is heaven. Of course if Annica had taken out the plastic packaging which covered the filter, it would have been much easier to breathe.
Finally we drive into our home town and it feels incredible to finally get to meet the kids. As we pull into the driveway, the kids run out to greet us and suddenly it feels like a blink since I had stood in the same in the driveway a month earlier and said goodbye. I just want to hug and hug them.
Everything feels so different and alive. All the trees and plants in the garden have grown and my son Christofer has grown over 2 inches and his voice is changing! Emelie is as tall as Jonathan. In contrast to the sterile blue and green hospital environment the colorful wallpaper and oak floors of our house emanate such warmth! It is so amazing to be home.
After resting on the couch in a half slumber, I feel rested and crystal clear in my mind – brain fog gone! We sit by the table and play cards and I can laugh and follow the conversation. My son Jonathan, the perceptive one, comments on his observations: “Pappa is different. It is not just the way he is acting or his head; there is something in his eyes.” He’s right – there is something different. I am the true me - seeing the world through a wider lens - taking part in a way I had forgotten. For this moment my telescopic lens on physical reality has opened up - revealing life as it is. I am seeing my kids and my wife for all that they are.
So now the first step on the road to healing is complete, but I realize that there is a long journey ahead. Even knowing that the road will be difficult with lots of ups and downs, it totally excites me beyond words. As of right now though I am at ease, I am dancing, I have come home where the story begins.
