"Dance, when you're broken open. Dance, if you've torn the bandage off. Dance in the middle of the fighting. Dance in your blood. Dance when you're perfectly free."
- Rumi
A special thanks to a former classmate Francine Hicks who posted this quote on Facebook for me! It describes perfectly the dance I have been trying to describe throughout this blog and is the perfect closer. Now that I have torn the final bandages off, done some mafia dancing in my blood and I am free of the progression of my MS it is time to you to see what I choose to do with my final days in Russia.
Catheter Leaves My Neck and I am Free!
I am lying in bed when the nurse comes in and signals that it is time to take out the catheter I understand Leonard Cohen’s “Hallelujah” for the first time. It goes quickly and she rapidly pulls out what feels like a fishing rod. I try to capture the gory removal of the rod that has lived in my neck for the past 2 weeks, but push the wrong button on my phone. I mean, who wouldn’t want to see a fishing rod-like structure being pulled out of someone’s neck? My kids watch Pewty Pie on YouTube who earns my yearly salary in a day by shouting at the screen (he is banned in our house btw). Certainly this device being pulled from neck could make me a few dollars.
Immediately afterwards, I get a shot in the butt and the nurse starts signaling rapidly with her hands, something which I interpret to be important. When she waves her hands more frantically I still don’t get it and she gives up. 2 hours later when I wake up, I get the message – the shot may put you to sleep.
When I wake up and it is all finished, I immediately start longing for home. Putting so much emphasis on healing throughout the treatment (and mucking about - dancing), I have not had time to focus on home. Now I just want to pack up my bags and climb on the plane.
From this point on, unfortunately, I start to slip back into old habits; being an obsessive compulsive perfectionist, being the biggest procrastinator in the world and then beating myself up for these short comings. These old traits have not magically disappeared through a few insightful moments in Russia.
For example, instead of relaxing and resting my depleted body like I know I should, I obsess about this blog. Making sure that every picture, paragraph, sentence, topic sentence and word is perfect (I leave the spelling over to spellcheck). So when I finally finish my post at 14.00 (2 pm), and have written the better part of the day and previous evening, I am for just a moment angry at myself, realizing that this kind of obsessive perfectionist behavior is a part of what has lead me here in the first place. Suddenly, though I realize that beating myself up for not living up to my ideals is, as a character trait, that which has also lead me here, and I quickly forgive myself and move forward.
In the afternoon, Amanda and I have booked a meeting with Dr. Fedorenko, to share some of our cortisone induced insights and ideas that could perhaps help make the hospital even better. When Amanda tells me it is time, I grab my notepad where I quickly jot down 3 ideas that we have spoken about and ‘hurry’ to his office. When we start the meeting, teacher Amanda has prepared her lesson. Here we have two teachers;
the mathematician, who is equipped with graphs, PowerPoints, statistics, questionnaires and an Euclidean algorithm to calculate the arrival of second breakfast so it is not too close to breakfast and not too far away from lunch; and the humanist who writes up a couple of notes and expects that it will lead to some kind of brainstorming activity. Two teachers = one genus; Math teacher + English teacher = two species.
Once Amanda has finished her treatise: trying get the Pirogov hospital protocol implemented in Australia, ways of helping Russian patients to get the treatment, improving the medicine protocols for after treatment care, etc...it is time for my moment in the spotlight. I pull out my crumpled up paper like an ill-prepared student who has done his homework only seconds before the lesson – which is the case. My grandiose ideas include a bookshelf and/or cupboard for books and left-behind food and spices (we thought of that together actually). My big idea that I am proud of though, is a poster on the wall with a list of Russian greetings, so patients can greet the nurses in Russian when they come into the room: “Good morning Olga”. I think it really would make a difference to the care that patients receive and makes the hard working staff feel good about what they are doing. I know this because I tried really hard to learn basic phrases but kept mixing them up saying things like “morning good Olga!" At the very least this generated some extra smiles.
As the meeting comes to a close, I can’t help feeling that we crossed some line and did not emphasize enough how great the service is and how thankful we are. Before we go we follow the normal Dr. F protocol and receive our hugs. As you can see in the photo, when hugging him, my love for the man really shines through. Trying to read the expression on his face, I can only guess that he is thinking "Is this man really pressing his face against my check? And why is he hugging me so hard. Please, let go. The feedback I will take from this meeting is that the Dr. F hug protocol needs to be revised.”
Outside the Gate
One of my goals before I leave is to walk to a grocery store that is just down the street, but is still a considerable distance for me. So after the meeting with Dr Fedorenko and Anastasia, Amanda and I set off and leave the gates for the first time in three weeks! The walk to the store is easy and we enter the store with safety masks in place. I only want to buy lemons, but settle on frozen berries and some bananas – I completely forget about the lemons.
On the walk back we chat as usual and it takes the focus off of any difficulties I might be having. As soon as we get on the other side of the gates though, I start dragging my left foot and feel like I have a roll in "The Walking Dead”. The last hundred plus meters I almost need to be carried and almost fall twice. In the end though I do make it back, as you probably have deduced since I am writing this. Amanda estimates that we have just walked 1 km, which I think is an overestimation, but when I check it out on google maps, sure enough, exactly 1 km – leave it to the math teacher. This is the furthest I have walked in over a year. Ok, I dragged myself through the last few hundred meters, but 1 km! I am pretty excited.
As the evening comes, I decide that there will be no more writing on the computer for the remainder of my stay and will rest and connect one final time with Amanda on her last day. I thought to honor here i could make a spread sheet that summarizes our time in Moscow.
The Last Day in Moscow
Speeded up by the cortisone, I do not sleep more than 4 hours on any night. Despite this, I still don’t find the time to meditate. God I have gotten lazy. I pop by Amanda’s several times, but she is working on a dedication film for Dr. F and Anastasia. When she is finished she sends it over to me, it is fantastically touching. I go over to tell her how much I have enjoyed it, but she informs me that she has to redo it. An hour later I come back but she holds up her hand and says “Almost Finished”. I tell her that I am getting visitors who will be here at the time she is leaving, but she tells me that she will be sure to interrupt us.
My HCST Journey Comes Full Circle and A Farewell to a Stem Cell Sister
Flashback to February when the fundraising is in full swing. One of the most touching moments for me is receiving a kind donation from a young university student and her mother; Elena and Natalia. More importantly though is the message written. What sticks out in my mind though is that, the message is mostly about how I have had such a positive impact on Elena’s life. She also writes: “My memory of you will always be from Halloween. You dressed as Superman and I was Supergirl. And that is how I will always remember you”. I certainly didn’t feel like Superman when the tears were running down my face – not to mention my wheelchair and cane and whole host of other lovely MS symptoms – although with all my digestion issues, I definitely have bowel movements of steel.
So what does this have to do with coming full circle? Well Lena and Natalia had been corresponding with me throughout my preperation for Russia, giving tips, advice and offering help; they are from Moscow. They also spend their summers here, so on this day I am getting visitors and to be honest I am worried that I am still Superman in Elena’s mind. But then I remember my rebirth and realize that new beginnings call for new superheroes – and I am ready.
So never fear…
When they arrive around noon Elena is not, however, dressed as Handigirl.
Really though, it is all a bit surreal. First off I have not seen Elena since she was in second grade. On top of that, in the ward, they have to wear protective masks hiding their faces so it is not exactly easy to recognize them 16 years later.
Despite this, and my blue spandex costume, we sit out in the lounge and chat for over 2 hours. It was great to hear about what many of my former students are now doing –everything from doctors, lawyers, engineers to tennis pros! But most of all it is great to meet such an impressive young woman who speaks 5 languages, has a master’s in linguistics and will now be studying economics; oh and has recently turned down a doctoral position – at the ripe age of 24. BTW the only credit I take for these achievements is the fact that I continually warned her against the ill effects of kryptonite.
We also discuss Russia and how it is portrayed in western media agreeing that Russia gets a bad rap. This despite the fact that up until the sanctions, Russia had one of the fastest growing economies in the world averaging 8% growth annually. We also discuss what it feels like to have a foot in two countries - to be international bastards. Especially how you behave differently when speaking different languages. For example in Sweden, when riding home on the bus, I implement what I call the roll and turn. This is where you walk past the seat you have chosen to sit in, stop, and roll with your back towards the passenger, avoiding all forms of communication while plopping down in the seat. it is essential to not make any contact with the person for the entire journey. My Swedish self can actually long for the silence of the bus. This is radically different from my American behavior, where I am a babbler and always strike up a conversation with any willing ears.
My visit is interrupted when Amanda is suddenly getting ready to leave. It feels strange that since the treatment has finished we have been so tied up in our own little worlds (obsessions) and have missed our last big conversation. To summarize our finish – we both have returned to some of the habits that have led us into the MS world, but I think we have learned enough on the journey to start living different lives when we return home.
We take some photos, do a final dance, and I follow her out to the elevator for a quick hug and an anticlimactic goodbye. Just as well that it is so rushed, I reason, since we are not slobbering fools like I had thought we might be. She gets in the elevator and is gone. It definately would have not been a dance without you Amanda! Eternally grateful! Perhaps we will meet again on her European tour.
Walking with Amanda outside the infection area it is now the moment of truth. Elena and Natalie can now remove their masks. As they slowly reveal their faces, a cold chill runs down my spine - I don’t recognize them. Could all the information she has given me about former students just be made up? Has Elena brought up a single name from the class or did I just feed her the names? Or is this just MS paranoia or… Are they are Russian spies? Yes that's it.
Ransacking my brain I search my memory for any incriminating political comments I may have made. Oh God - my fondness for the Putin fishing t-shirts depicting a half-naked, sweaty, fishy Putin. No, calm down, these are just thoughts and fantasies that have not bean divulged - they remain only with me.
Really though, as soon as they take off their masks, it is instant recognition. Most of all I recognize Natalia who I now, more than ever, recall talking to daily after every school day. And even 16 years later, Elena’s face is incredibly familiar and I suddenly remember even more details from one short year in my life. Before they leave they give me a gift – Russian caviar to be eaten with champagne when we get home and celebrate my new life. I promise to contact them when I am in Uppsala and they promise some Russian snacks and maybe even some borscht soup. I ask Elena kindly to not replace her memories of me as Superman in women's pantyhose with Handiman in blue spandex tights; that would just be wrong.
Final Meeting with Dr Fedorenko
After a short rest, Dr. Fedorenko comes into my room for the last time to summarize the treatment protocol, to discuss my blood levels and to explain the dosages of medication once home. What is surprising is that my blood levels, with one exception, are all at similar levels to those that I had upon arrival. Even my neutrophils, which are the first blood cells to respond to bacteria, are near normal. When it comes to food, he explains: “no restrictions, your levels are normal”. I had thought that I would not be able to eat raw food for 6 months, now I just need to be cautious and wash veggies extra carefully.
Another pleasant surprise is that I had thought that I would lose all of my vaccinations, but according to Dr. F all of them are completely intact, which is a huge relief, especially considering the huge influx of refugees who may or may not have common vaccinations. Finally, he cautions that once all of the cortisone exits my body, that it is not unusual to get back spasticity and weakness in the legs. This can last for the first 3 months and you can actually get worse before showing improvements after 6 months. I am not planning on waiting that long though.
The conversation ends with me thanking him and praising the care that I have received. I feel a little uneasy about the meeting we had the previous day and feel like we took time from his busy schedule when we could have given any ideas and feedback we have in this final discussion. But he insists that he loves getting feedback, since they always want to improve.
Looking past the problems that can arise with communication, the service has really been excellent in every way. Dr. Fedorenko is truly an amazing human being and I try to tell him all of this. He asks “Do you know why?” And by now I know the answer: “Team” I say. He smiles broadly and gives me a high five and then a Dr. F. patented hug. This time I try not to embrace him like Glen Close in Fatal Attraction. Before leaving he reminds me that the stem cell party is beginning and I remind him to gather any of the personnel who are still working for a final thank you recital!
Final Evening - Final Stem Cell Party
It is time for me to attend my final stem cell party. It is Fran and Anne-Lise who have the honors. It is touching to see Anne-Lise who has unfortunately had a stroke as a result of the stem cell infusion and spent a week in intensive care. She has lost vision in one eye, but seems thrilled to be here. Suffering from several different chronic diseases, she hopes to put a stop to the progression and was not in a strong state to begin the treatment. Fran has an autoimmune disease called CIDP, which is similar to MS with a candy-coated twist - her attacks lead to temporary paralysis. This condition can also be cured by HSCT. As these two older women pour out the liquid nitrogen and the mist spreads out across the floor, I think everyone is hoping that this really is the beginning of something new for these two who have suffered with their conditions for way too long.
After the party we sit and eat cake (the normal people), while I eat a bowl of microwaved berries with melted raw 100% chocolate and sliced bananas (pretty divine actually!). We talk, laugh and tell jokes. A doctor from New Zealand, Jacqui, is along as support with her Aussie friend and patient, Megan. She has never heard the Aussie inspired joke:
- How does a Kiwi find a sheep in the grass?
- “Very satisfying”.
As a fellow fan of “Flight of the Concords” I have the utmost respect for her despite her reverence for sheep. The one regret I have though is that I do not ask her more questions about her opinions about the treatment and the level of care at the hospital. I am too busy telling jokes instead of trying to learn something.
As the gathering starts to come to an end, doctors, nurses, assistants and kitchen personnel start to arrive. It is time for one more serious moment and a special thanks to everyone who has helped me during this month long stay. A final dance with staff!
A Final Promenade in the Park
Before the sun goes down I get in one final walk out in the beautiful park area in the warm Moscow air. I feel the effects of the dissipating steroids in my body, which up until 2 days ago have fought off inflammation and protected me from chemo. The fluidity in my walk has become effected, but I still manage a nice walk and a final tour of the park. Before sitting down in the open square I do one more Qi Gong session and celebrate the use of my left arm. As I sit enjoying the warm summer air, I realize that I cannot procrastinate packing for one more minute. So in celebration of my new birth and new habits, I pull myself up, drag my legs back the ward and….talk to Fran for 2 hours.
Of course it is totally worth it to have such a nice coversation with someone who is like-minded. Besides, I assess my packing time to only be around 25 minutes, max.
First Fran shows me a model of time she has drawn up, which is extremely interesting and we start our discussion there. We continue on about the book with essays on Budhism she has lent me and we finish with talking about different events in our lives that we are struggling to let go of. Well, I think Fran has let go of a lot more than I have. After two hours, it is after nine and I desperately need to pack. We say our farewells and I promise to pop by later with my beloved himalayan salt, which will not make the trip home.
Combined with my procrastination syndrome, I am also a time optimist. Somehow these two are intricately intertwined I surmise. The 15 minutes I calculated, turns into almost three hours and I cannot get my bag under 20 kilos.
In a desperate attempt to postpone the pain of packing, I consider calling my sister Jen on Skype, to procrastinate, and saying “Hi, Jen listen, I can’t talk for that long, because I really need to pack.” This would of course evoke memories, from the mid the 90’s, where the two of us sat up past midnight clowning around - I was returning to France the following morning. Of course I was leaving for over a year and needed to pack my whole life within 3 hours before leaving for the airport and I still hadn’t began to think about what I would need. In the middle of our clowning I repeatly exclaimed “Jen, I can’t talk for that long, because I really need to pack”. So no growth - no improvement on the procrastination front. I am furious with myself. At least I don't call Jen.
So that is how I finish off my stay – bad habits appearing once again, but with a new me that is able to “dance in the middle of the fighting” and forgive myself for my short comings. That is a hopeful ending - a realization that I am not perfect and still have things to work on.
The next day at 6 am, the taxi will take me to the airport and I get to bed by midnight and pass out.
Final Thoughts Before Depart
The past month has zipped by and it has been one of the best and most meaningful times in my life. You could say that most of the time I even had fun. When starting this blog I wanted to think of a name that did not include metaphors of war where there is a figurative battle taking place. Fighting ‘battles’ imply that you do not accept reality as it is and this often leads to more suffering. The idea of ‘dancing’, which is a tad cheesy I admit, has regardless lead me back to that part of myself that could joke and laugh even when times are tough. Simply put, I am more at ease then I have been for some time. I choose ease here since modern holistic doctors often speak of the ease - dis-ease continuum.
Some doctors, however, are called 'quacks' for believing in such an 'unscientific' model. Maybe they are 'quacks', but then so is Dr. F, the man who has cured more people with chronic disease than anyone else. Being at ease, is at the very heart of Dr. Fedorenko's philosophy, as I see it. So once again, I choose to believe in the narrative of dis-ease leading to disease. I know the kind of dis-ease that led me towards MS. And I also know the effects of ‘Dancing’, joking, laughing to be happy, accepting and being transparent - of being at ease. Being at ease and 'dancing' have led me to connect with others and has made my time in Moscow one of the most memorable times in my life. On the few occasions where I have been tempted to sit in my room in a state of dis-ease and fight, I have always known it was time to dance; to talk with the wonderful people who I have shared this experience with, to goof off with Amanda and do a photo shoot, to go for a walk or to meditate. And that, I am convinced, has made all the difference.