As I write about isolation, I kind of need to explain a little bit about my personality, because it really does not fit in with how I have traditionally seen myself.
“John Carter from Procrastination” would be the title of the film about me. I have been the guy that: waits to the last minute to do everything, can never find his keys, has 30 tabs open on his browser, forgets parent meetings, lets his wife take care of - well - everything, misses bills, cannot manage ever to go to bed before 10 pm, get up before 10, always has to have ‘one more’, despite etiquette in Scandanavia is in fact the one who takes the last piece of cake, can never get anywhere on time, reads every self-help book with the utter conviction that this time the truth has been revealed and the methods - once implemented - will be life changing.
Furthermore, I am an expert on any and every topic that happens to be my latest kick – Religion, race relations, media, pharmaceuticals, politics, you name it. If I am on that kick than I know the absolute truths about them.
I am also the guy who has read the first 3 chapters of “7 Habits of Highly Effective People” three times and then always put it down. Why? Because the book asks the reader to structure their life and then, and only then, to read further. So, at least I follow the advice to a certain degree. So this a brief presentation of what is a pretty much an undisciplined soul; someone without much planning and structure in his life.
Multiple Sclerosis = CRISIS
CRISIS! Yes! Time to dig into some etymology! And as always this one is
fascinating.
While talking to another amazing woman, Fran, from Canada, she mentions that ‘Crisis’ is connected to ‘decisive moment of change’.
I research further:
- Crisis (n.) early 15c., from Latinized form of Greek "turning point in a disease" (used as such by Hippocrates and Galen)
- Chinese symbols meaning both 'danger' and 'possibility'
Interesting. So it follows right that after my MS crisis, suddenly I am always on time, I can find my keys, I never procrastinate, never forget parent meetings…ok you see where this is going, MS just makes all of this worse. Except this time only to a point, because something has happened to me over the past few years. I have finally managed to find some level of self-discipline in my life. It can, however, be mere desperation. The very thought of life frantically searching for my keys, in a wheelchair, has been such a strong catalyst in trying to change my self-discipline. In fact, there are two important concepts that have changed this. Two terms: 'Ritual' and 'habit' have replaced the myth of self-discipline.
As a result of this discovery (from self-help books, of course) I have started to create small rituals that have turned into habits. Now for those of you who know me from childhood, college or France, this will require a mind-blowing Einsteinian thought experiment. Picture a JC den, any of dwelling will do. Now picture that every morning, JC wakes up in his bed and must make it. I swear, it has become habit.
So as a result of my crisis, I have reached a turning point and have created habits that make life easier. I still, however, cannot be on time even when I have created a habit of getting up early (there is a mechanism in my head that will just not allow me to leave early - God help me - I blame my time in the South of France!)
So, since my approach to isolation is a bit extreme, I just don’t want you to get the get the wrong impression about who I am. I am simply a normal guy who is going through crisis - 'a turning point' with an 'opportunity'.
Humor, thus far, is my way of dealing with potential pain or suffering. ‘Dancing’ has been the metaphor for joking and laughing about difficult and embarrassing events. So as I enter isolation, I have a pretty good idea of what I want to do; there must be some kind of ‘dance’ involved. Sitting and watching movies and eating snacks is out of the question. in isolation my body and mind is taking on a new beginning! The time in isolation must be seen as the most important part of the whole process – the point of creation. A new kind of 'dance'.
The Technological Purpose of Isolation
Well of course the purpose of isolation is ultimately to put you into quarantine when your immune system is completely knocked out and your body is defenseless against bacteria. This is the technical explanation.
But, what about 'heart' and 'mind', the holistic approach? From this perspective, what else should it entail?
Isolation can be a scary concept. Some find it terrifying while others find it heavenly. Now it should be noted that there is a disproportionate number of patients here that have three small children. No one here, out of love for their children, makes the claim that having three small children is a stress factor leading to MS. With that said, their is a definite link between mother’s of three small children who find isolation heavenly (all names anonymous). You would be shocked at the unusual amount of crowbars lying around the corridors, waiting to pry these blissful souls out of isolation.
As for myself, when I first read about 8-10 day isolation, old-brained Carter thought, yes, limitless entertainment media and endless snacks! A week long gluttonous media frenzy! I even packed accordingly.
Once arriving though, this felt completely wrong. I mean I have been struggling for at least the past 5 years with one the most progressive forms of MS. I have set up some great rituals where I swim, go to the gym, do meditation and Qi Gong and I rarely break ritual. Perhaps most importantly though are the donuts, cakes, ice cream, pancakes, candy, pizza and BEER which have been swept from my life by whatever the latest MS diet I have recently dedicated myself to. BTW I call my diet “The 5:2 intermittent fasting - Wahls Paleo Pegan LCHF Raw Food Diet with a hint of Swank”. Are you up for it MS:ers?
Seriously though, with all of these habit changes I have been trying to forge out, it seems a waste to sit for 8 days in isolation and not try and create some kind of ritual that can benefit me for both the short time I am here and my return home.
The final and most important push comes, however, when I start getting such positive encouragement from all kinds of people on Facebook and other social media. It is then that I really start focusing on all of the amazing support I have received over the past few months from people from just about every corner of my life. All who have come through to help me make this incredibly hopeful treatment come true. I am totally inspired by the people in my life and how much they just care - isolation suddenly becomes a spiritual retreat.
PPMS is statisically the least responsive to the HSCT treatment and this why Dr. Fedorenko always says there is a 70% chance technology can stop the progression and with 70% heart and mind the patient does the rest at a 140%, according to his math. i sit down and draw up a sign to hang outside the ward to remind myself and all incoming patients of this FACT.
In a word, I realize that I cannot waste my week of isolation on film and snacks. I mean, I get one chance at this. ONE. And I am taking it.
Meditation Retreat – Learning New Habits
Long before I knew that I would be going to Russia, I had tried several alternative attempts at healing, the most significant being a 10 day Vipassana retreat at a nearby Buddhist center in Sweden. The schedule for the 10 days isterrifying with up to 10 hours of meditation per day. On top of that there is an oath of silence, no communication of any kind, vegan meals and no meals after noon, no media (no pens, paper, music, etc…).
But without thinking too hard on it, I applied in January and got a place in March.
Without going into details, I can say it was the single most significant self-awareness experience in my life. Since being accepted in Moscow, I had been thinking of ways to make use of what I have learned from this experience.
One of the things I not only learned, but internalized, is the concept ‘institutionalization’ I spoke about in my previous post. At retreats like this, you enter into a new and unfamiliar environment and you either accept the structure or you reject it. 98 % of the 180 participants stick it out the full 10 days. Why? Because you enter into a kind of an autopilot mode, shutting off your rational brain. When this happens you stop looking at future points and find flow and new habits form naturally.
So, my idea becomes to turn my days in quarentine into a retreat. This fulfills the 70% heart and mind part of healing.
At the retreat, a soothing gong rings continually throughout the day 'triggering' everyone into the next phase of the day (click on picture for affect). This continues until bedtime at 21.30. You totally experience the concept of institutionalization and even internalize it. It is difficult at first, but incredibly liberating, since you know that you are doing something incredibly good for yourself, and once the habits are established, you face almost no self-resistance. You are triggered by a gong in a Piaget sense and for once in life you do what you know is the best for yourself.
Since the retreat I have lost some flow, but still have meditated almost every day since the retreat and have built up some decent habits.
With ideas of diet, exercise and meditation, I start to think about how I could implement a schedule and put into practice everything I believe to be ‘true’, creating a kind of quaranretreat. A model that combines with Dr. Fedorenko’s focus on a holistic cure, rather than just leaving it all over to technology. So as isolation approaches I set up a plan.
My QuaranRetreat
Day 1: New Life After Stem Cell Infusion
On the Wednesday following my stem infusion, my leukocytes are still quite high; an extra day to sit and plan. I ask Dr. Fedorenko what the shortest anyone has been in isolation for and he replies not shorter than 6 days. So I set up a goal to be out after five, more as an incentive to carry out the experiment, but also because 5 is the symbol of redemption!
And as I learned from the retreat, it is so much easier to set up and follow through on new habits in a new ‘institution’. A person can be an engaging friendly teacher at school and a grumpy pain in the ass in the home (just a random example). Institutions change us. So I set up my ‘institution’ accordingly.
During the day I sketch up a simple daily schedule for the first four days, mostly with meditation times. I set times aside for writing, reading and talking to family. No films and TV allowed. Once completed I program in my phone with a recording of the same soothing gong you hear above, and program it to ring 5 minutes before each meditation. Days 1-4 I will meditate 4 hours per day and day 5 I will finish with 5 big sessions.
Another important part of the isolation is the food. In order to minimize
inflammation and aid digestion, I avoid the usual milk and gluten and all refined sugar, which spikes insulin and causes inflammatory response. I also try to exchange some of the meat dishes they offer with cans of sardines, which are high in anti-inflammatory omega-3 fatty acids. Finally, I have my magic spice combination (turmeric, cinnamon, chili flakes), which in combination have been shown to have incredible effects on inflammatory disease. And of course some Himalaya sea salt with 21 additional minerals not found in regular salt. I chop up and mix the contents of most meals into the broth I receive and make it into a soup to aid in digestion. I add the spices and put it in the microwave to kill any bacteria.
Finally, no caffeine - drink only herbal teas so as not stimulate the nervous system unnecessarily and last but not least, lots of lemon water, to keep blood alkaline.
So that is the plan. 4 hours of meditation per day and as much Anti-inflammatory food as possible.
Day 2: New Life
On Thursday, the second day after the transplant, Dr. F. says I should be ready to go into isolation in the afternoon at around 2 pm. Once in isolation I get myself in order, relax and finish the day with my first hour meditation session. The four day plan starts the following day.
The morning alarm clock is meaningless since, all the steroids and other drugs make it difficult to sleep. So I am up at 5 regardless and it is here
that I discover one of the unexpected pleasures of isolation – vodka baths. That’s what they are called and they even have different vodkas for ‘bodis’ and ‘privates’ – Absolut vodka for the body and Smirnoff for the privates perhaps, or what's your fancy? I am not sure I want to give this tradition up.
The first day is tough, but suddenly by evening, I am already into it. The meditation is regular.
By day 2 my leukocytes sink to .29, and then .16, and 0,1 in a normal progression over the following 3 days. 0,1 is a good number and Dr F explains that my leukocytes should now start to rise and they reach .33 the next day. Looking at the paper he says you should be out by day 7. And before leaving he always asks enthusiastically “Are you meditating?”
As far as morning routines, I begin by drinking a liter of lemon water to start the day. For breakfast I often eat some form of porridge, buckwheat or oats, with chopped up baked apple saved from the previous day’s second breakfast, mixed in with sugar free applesauce and cinnamon and some crushed chia crackers I have brought with me.
For second breakfast I always chop up the baked apples, meat, or ox tongue and sprinkled it with turmeric, cinnamon and chili combination and add Himalayan sea salt. For lunch and supper, I try to eat my sardines or mackerel in soup form - always with the same spices. I drink herbal teas such as ‘detox’ or ‘licorice/peppermint’ with the meals and 'camomile' before bed. Very basic.
My True Intentions with Meditation
Actually, the goal of getting out in 5 days is only set up to give me a little nudge.
The real purpose of the meditation is to train my mind and nervous system to be less stess reactive, more mindful and more understanding so that my new body will function optimally and I will live a better life with my friends and family. To achieve this, I combine three techniques: the first is a Vipassana technique, the second is NLP, and the final type is “A Gesture of Kindness Meditation”. With these techniques I am trying to rewire my nervous system to be less reactive so my new immune system will be able to function as efficient as possible. More importantly though, these practices will give me the ability to be a new person.
I will write a separate post about these techniques for anyone interested.
Two Life Revalations
What I will say here about the meditation techniques is that they lead me to two life changing moments in isolation. One occurs when sitting to meditate at 5.30 on day 5. As soon as I sit down, I suddenly start to sob uncontrollably. What is so liberating though is that I am not sad about anything in particular – there is no story, no ‘only if’, no ‘I should have’, no ‘I can’t believe I did that’, no ‘I wish’ and I can’t stop. In fact, I keep looking at my clock trying to start my meditation and 10 minutes turns into a half hour of slobbering tears.
In Vipassanna, it is believed that we store tensions in our bodies which are a result of our stress reactions to life experiences, known as sankara. After hours of sitting still, these sankaras release. It definitely feels that way, but it could be all the drugs and chemo.
The other experience is when I am standing in the bathroom doing a vodka bath. As I move my hand across my emaciated body the hairs from all corners of my body start pulling out in clumps like in some horror film. I glance down and catch sight of my boney legs hidden under my newly developed pot-belly bloated with cortisone. I see a reflection of my bald head in the mirror – I am unrecognizable - I just laugh. I have a vision of the picture of me on this blog where I look as good as I have ever looked – but I immediately remember how at that moment I was on the brink of a panic attack and experiencing incredible anguish - under the surface. Now my physical being is reduced to skin and bone but my mind is clear, strong and vibrant - it doesn’t matter – I am so happy to be me and I laugh and laugh.
Final Days
The days go by so fast, that I never bother to reprogram the telephone gongs for 5 mediations on the fifth day. So when I wake up to meditate, I get off track and miss my first session after breakfast. I get a little disappointed at myself, but just before sitting down for a session before lunch, Dr. F rushes in and says, “Incredible, you can leave isolation this afternoon. Have you been meditating?”
By day 6 I have day 10 leukocyte levels!
For me, it is not a competition (ok a little bit), but when your immune system is knocked down to zero, the fact is the faster you can get it up to secure levels, the less risk there is of getting an infection that will kill you. The question is though, what has caused this rapid increase? Is it the meditation or just my body’s natural reaction, my blood just doing what it does?
Later when discussing this with Dr Fedorenko, he tells me that he knows about numerous studies that show that mediation significantly enhance T-cell production. He points and says: “Who knows, maybe a meditation room and instructors in the future at the hospital?”
I have also read about these studies too before hand and have had big hopes that there were some truth to them. When you have MS, it is the feeling of losing control of your body that is so terrifying. As a result of this experiment I suddenly feel that I can control the production of healthy cells and influence my immune system - and that is a powerful revelation.
These self-revelations combined with this feeling of empowerment and control I experience are indescribable. I know too that there is so much more at play here. Call it what you will, collective consciousness, morphic resonance, prayer - all of the people who are following me so closely and caring about me are making this happen. I can feel it and I am inspired.
Everything comes to an end so expectantly that I do not know what to do with myself. I do not want to leave isolation and start meeting people again. I want to continue, but the trance is gone and I slumber through the rest of the day dreaming of continuing with my new habits that I have finally implemented and hope I might just be able to take them with me. Before I doze off, I fully appreciate my crisis.