2010 – The Naked Monk

Thanks

I’d like to take this opportunity to thank everyone from the bottom of my heart for your warm wishes, positive energy, love and support regarding Monday’s MS procedure in Albany NY. I can’t begin to describe how deeply touched and blessed I felt to receive such incredible warmth and caring, it was truly overwhelming.

Stephen has shared bits of this year long journey of deliberation and uncertainty with the CCSVI treatment, articulating with tremendous accuracy the mechanics and implications of the procedure and his personal thoughts and feelings in his uniquely intimate way. So, I asked him for a little blog space to share my profound appreciation and admiration to my husband and partner whose unwavering love, support and friendship nurtures and strengthens me every day. I can’t say thank you enough Stephen!

I may have the disease, but the painful reality for most loved ones of people with illness is that he also struggles with the disease; among other things with a sense of helplessness and frustration often equal to my own. Ahhh, how complicated…and so we support each other.

Even today I wonder how can a man who seems to have come from another world could so readily have embraced a life not just with a mother of four, but with a woman suffering from an incurable degenerative condition. Well, ten wonderful years+ later, I’m still baffled but also deeply blessed and very much aware of how we both have grown in ways and depths neither of us thought possible. I understand and appreciate how we both work every day to stay ‘awake’, to reflect, and face our doubts and demons, separately and together. This ‘work’ strengthens our bond— with ourselves, with each other, and is a wonderful example to our children, what more could I hope for in this fragile uncertain life?

Now that the procedure is over and according to the surgeons went well, I’m looking forward to the holidays with my family; let go of all doubt and speculation and move forward.

Wishing you a Merry Christmas and joyful holidays,

Caroline

Veinoplasty Day

This blog entry follows up on the previous Tale of Two Stents

December 20, 2010

Caroline’s undergoing veinoplasty as I write. We arrived in Albany on Friday and she had her preliminary ultrasound the next morning, when we stood in line with all the other Canadians. We’ve filled the time since then shopping, retreating to our hotel room and generally feeling anxious. We’d have liked to have shopped more for Christmas, but Caroline’s limit’s about an hour.

These have been four days of hope and doubt. People who undergo this procedure sometimes experience an immediate benefit, sometimes not; what benefit there is might fade with time or be stable; the benefit may be immediate; it may come later; it may not come. Caroline’s Doctors Kenneth Mandato and Gary Siskin are the first to admit that they have no idea if or when this will work, let alone why. They’ve performed some five hundred procedures so far and continue because patients on the whole say they feel better. For the doctors and their team, that patient response trumps the requirements of scientific explanation. For doctors in the Canadian medical establishment, and some in the U.S. too, that’s unacceptable; they put science before compassion and excuse it as professional caution. As they proceed, the pragmatic, heart-first Siskin and Mandato are collecting data they hope medical number crunchers will help them turn into explanations.

I’m here to support Caroline, but we’ve been nervous and antsy, snappy and short-tempered. It’s a roller-coaster. I’ve learned in the last ten years that there’s a lot more to chronic degenerative disease than symptoms. I’ve watched Caroline work hard to accept her growing limitations: her legs obey her brain less and less, her fingers stop typing in the middle of a sentence and won’t start again; she never knows when her energy or alertness will desert her. Accepting that takes a huge mental effort — a side of her I constantly admire. Having achieved that acceptance at great personal cost, she’s reluctant to give in to hope. Imagine having to rebuild nineteen years of acceptance all over again; it was hard enough the first time around. You may say there’s no choice, but you’d be wrong. Many find an alternative in defeat and brute depression.

Hope’s a two-edged sword that we all wield, every day. Who doesn’t know their end will come? We don’t just live with that harsh reality, we flourish under it, investing in life as if we’re immortal. Caroline’s balance between acceptance and hope is different from the rest of us because she’s been reliably informed that it’s different, and because she feels it in her whole body. In the last days she’s said a hundred times that all she wants is to live an ordinary life — but what’s that? Would I so easily accept my three score and ten if everyone else lived the lifespan of a giant tortoise (about nine score)?

Rationalize it as you may, Caroline sometimes feels short-changed but mostly just counts her blessings for each healthy and productive day.

* * *

She’s out of the procedure. Everything went as planned. They found narrowing in both jugular veins, and ballooned each one open. No stents were used. Caroline found the procedure uncomfortable; two other patients she met here claimed to feel nothing. The doctors aren’t surprised one way or the other. Now we wait and see.

December 21, 2010

The morning after, we’re back for the concluding ultrasound, to see if the veins remained open overnight — so far, so good. In the waiting room, the woman next to us is excited; she feels “terrific.” Her enthusiasm is contagious. “I jogged this morning,” she says. “Well … jogged, you know — not like I used to but better than for years.” Of course people want to read success into the ordeal and expense of this experimental treatment. The others we met had travelled farther than we, and may well have been more hard-pressed to come up with the money.

The lady was diagnosed eighteen months before. In the early, relapse-remit stage of MS, you suffer attacks, then feel better. If you’re on MS drugs, or undergo this procedure, or go on the gluten and milk-free diet suggested by natural health advocates, it’s tempting to attribute any relief to whatever ‘solution’ you’ve chosen. However, you never know. MS is so unpredictable it’s even been known to stop — just like that. Doctors have no explanation. Truth be known, they still haven’t figured out what actually causes it.

The lady next to us asks what MS drugs Caroline’s used for the last nineteen years, and is wide-eyed at Caroline’s answer: “None.” The lady injects Copaxone daily.

While insisting that veinoplasty’s dangerous, Canadian Medicare forks out $20,000 a year per patient for this drug. Copaxone’s side-effects include flushing, rash, shortness of breath, and chest pain. Caroline’s in pain after the procedure, but it’ll pass; she’s not doing it every day. How effective is Copaxone, and how about sticking it in your veins every day for the rest of your life? After two years of daily injections, 78% of patients on the drug are progression free, as opposed to 75% on placebo. If I were a statistician, I might be impressed; I’m neither. One year of this drug costs three times as much as this procedure in the U.S.; about ten times the estimated cost of doing it in Canada. The internet is rife with speculation about the politics, medical turf-wars and shady dealings that go along with all those dollars and marginal percentages.

Caroline’s beyond drugs, however. She’s now secondary progressive, meaning that instead of attacks and remissions there’s a steady decline; fortunately, it’s not rapid. There’s no medication for secondary MS — nothing even as questionable as Copaxone. If she experiences any improvement now, she can attribute it pretty fairly to the veinoplasty. We’ll see.

In spite of this disease, Caroline’s built a hopeful life for herself that, by taking her multiple sclerosis into account, avoids false hope and wishful thinking. Her work, her children and her marriage bring her enormous satisfaction. She has a life. Anyone who’s met her knows she’s full of life. She wants it to last as long as possible. Don’t we all?

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Read Caroline’s reaction to the outpouring of support here

A Tale of Two Stents

A couple of weeks ago, our friend Hassan felt a tightness in his chest, and then a few other troubling symptoms of cardiovascular disease. In the middle of the night he called for an ambulance, and next day had a stent in place, firmly holding apart the walls of a formerly constricted artery. His heart had also been thoroughly examined and he went home not just feeling much better, but assured there was no lasting damage. Angioplasties have been performed regularly for over fifteen years, and since 2001 at a rate of over two million per year. The risks and benefits are well known.

A catheter inserted through the groin is used to transport imaging dye, a movie camera, a balloon and the stent up to the heart. This being Canada, Hassan wasn’t billed on his way out of hospital, though he has been paying income tax all his life which, of course, is what covers the cost. Some Americans think Canadian health care is an abomination, others think it’s admirable. In the end, it’s the nurses, doctors and technology that make the difference; the way they’re organized is just another system. Anyway, we’re about to experience the U.S. system for ourselves, as Canadian health care refuses to give Caroline the treatment she wants.

About a year ago a procedure not unlike Hassan’s was suggested as a possible treatment for multiple sclerosis — but in veins rather than arteries. Venous problems have been associated with MS since 1863, and in 2008 the vascular surgeon Dr. Paolo Zamboni found constricted veins in the necks of MS sufferers, including his wife. Following balloon veinoplasty, opening the veins to blood flow, he reported their conditions improved, and proposed a theory called CCSVI (chronic cerebro-spinal venous insufficiency). It doesn’t account for all symptoms and occurrences of MS, and it’s far from proven, but it is generally considered worthy of study. None of Dr. Zamboni’s patients suffered any ill-effects.

Over the period of 2010, however, the Canadian response has been timid, to say the least. Proposed studies are limited to considering the viability of the theory, and draw the line at testing it on willing patients. Thousands of MS sufferers consider immediate experimental treatment preferable to allowing the disease to progress further, whether or not it works. They’re lining up to travel abroad for expensive treatments with no guarantee. The perception is that veinoplasty carries no greater risk than angioplasty, and certainly less than the long-term effects of existing MS drugs, none of which even pretend to halt disease progression.

Medical authorities in Canada, as well as the MS Society and the Federal Minister of Health Leona Aglukkaq, have responded with great reluctance to the demand for accelerated studies, or even follow-up for those who undergo the treatment abroad. Dr. Mark Freedman, a member of the MS Society’s Medical Advisory Committee, recently described those advocating CCSVI as a “mass hysteria movement based on unfounded facts that has led to no less than a cult.” The medical establishment is also describing the treatment as “dangerous,” pointing to two deaths (one of which was fictitious) following veinoplasty treatments in which stents were used — something Dr. Zamboni categorically rejected. In one case, the stent migrated into the chest and was successfuly removed, despite reports to the contrary; in the other, it became clotted with blood. Artery walls contain muscular tissue that contracts and expands with the pulse, but vein walls are soft and collapse when not filled with blood; their ability to hold stents in place is quite different.

The long and the short of it is that this weekend Caroline and I travel to Albany NY, where she’ll undergo the procedure. Her condition has deteriorated over the last year and she’s hoping this will stop it getting worse. The treatment’s expensive and although common sense dictates that money’s not the issue, cost is an added stress. She’s also adamant that no stents be used, but worries that if scans show the veins closing up they’ll be recommended — she doesn’t want to have to refuse. She also worries about the follow-up that’s required but not available in Canada. We’ll have to travel the four or more hours to Albany, in unpredictable winter conditions, for routine scans and in case we need any sort of ongoing reassurance, examination or explanation.

Finally, we have to leave behind the support system of Caroline’s friends and family, not to mention the familiarity of her doctors and pharmacists, to explore something that, proven or not, is an option she feels is not really an option. She thinks she’d be crazy not to try it. I can only agree. We’ve looked at Zamboni’s theory; clearly, it’s not comprehensive, but thousands of people so far have claimed marked, long-term improvements. Who cares that no one can properly explain it? She’s not naive enough to expect a cure; at best, she hopes it will end or at least reduce the debilitating fatigue that dogs her day after day. At the very least, she hopes disease progression will slow, so she can exercise her balance and strength. As long as she avoids stents, we don’t fear bad outcomes, despite dire warnings from the Canadian medical establishment. If their fears are well-founded, they’ve done a poor job of communicating them. Frankly, they seem more afraid for themselves than for their patients: of losing face, and of compromising their collaboration with pharmaceutical companies.

Their reaction is disappointing to say the least. They’re rightly concerned with the viability of the theory, but their inability to acknowledge the desperation of their own patients, their refusal to fast-track experimental treatment on willing volunteers and, above all, the denial of follow-up treatment to Canadians travelling abroad, is not only uncompassionate but also unprofessional. They’re giving MS sufferers no say in the matter. The system saved Hassan’s life in a weekend, but a whole year after Dr. Zamboni’s announcement of a new treatment for MS, Canadian medical researches are not one step closer to knowing whether it’s viable or not.

Decisions, decisions

Quiet Mind student Falk Kyser asks, “using the Buddha’s teachings, how do you make an important life or business decision?” Falk is not one for little questions.

Spiritual pathways like the Buddha’s are making some impact in the business world, but only baby steps. There’s still a long way to go in overcoming the perceived gulf between spiritual and material pursuits. I say perceived, because there’s no practical difference at all. Let me explain:

My own introspective life, as well as feedback from meditation students, has shown me that much of what we call perception is in fact preconception — we tend to see what we expect to see, sometimes even what we want to see. Buddhism draws attention to this by guiding us in mindfulness practice towards bare perception (manasikara) — sustained attention to something in the present moment — usually the breath. As beginners, we discover that bare perception is almost instantly overtaken by the feelings, attitudes and mental constructs that constitute the inner chatter. Among other things, mindfulness slows down the interdependency of those mental events so we can: a) see how the untrained mind works, and b) develop focus and make more informed decisions.

Most business leaders see meditation and spiritual pursuits as woolly-minded and impractical — something that, if you really have to, should be done outside of the workplace. It’s hard to blame them. On the other side of the imaginary divide, ‘spiritual’ teachers and practitioners consider themselves at war with greedy materialists, and favour wishful thinking over hard-nosed materialism. What both camps are missing is that authentic paths to mental freedom don’t separate the spiritual from the material but reunite them in organic, practical and everyday ways. That’s what core Buddhism’s all about. Of course, Buddhists can be woolly-minded too; wishful thinking’s a natural tendency of the human mind. Just because you ‘believe’ in the Buddha is no guarantee that you’re actually following his example. The point, as the Buddha himself made on many occasions, is to explore your own mind and, knowing it, come to your own decisions.

There’s another perceived conflict between business and spiritual thinking: goal-oriented versus non-goal-oriented behaviour. Organized managers and business leaders favour rational thinking and planning for good reason, but they often lose sight of the fact that people are driven by emotion. Scientific studies have shown that most reasoning takes place after the fact—to justify a foregone decision. The good news is that emotional decisions aren’t necessarily wrong ones; the bad news is that we often think we’re being rational when we’re being emotional. If you’re looking to know your own mind and how it works, such rationalized excuses are just more mental constructs that pile layer upon layer of mental chatter, adding to confusion and causing bad decisions.

The most common source of confusion in business is thinking that the bottom line is money. It’s not — it’s survival; money is only one component of survival. Ethics, satisfaction, self-esteem, integrity, dignity, honour and compassion are qualities that serve both individuals and organizations, promoting long-term growth, happiness — and survival.

The practice of mindful reflection develops these qualities by combining mindfulness —sustained attention to what is (as opposed to what one wants), with insightful reflection — an understanding from your own experience of how you’ve made decisions and how they’ve worked for you. By focussing quietly on your mind in the present moment you clear the fog of preconception and, instead of falling for your own rationalization, see past it to your emotional motives.

For example, I was recently referred to a new client by a supplier who, over the years, has passed several opportunities my way. After the job, the client alerted me to a problem which I fixed immediately at no charge, the unspoken assumption being that I’d ‘overlooked’ it first time around. A week later, my supplier called to explain that the client was in the same situation, and was now upset.

My instinct was to protect my reputation at all costs. In fact, my hand was on the phone to tell the client I was on my way, but at that moment I detected the pang of resentment. I put the phone down and stopped to reflect. I’d been careful to do the job right second time around, and knew I could guarantee it. Looking deeper into my own motives, I realised that I resented going back because the only explanation was that my client had ignored my advice on how to implement the job I’d done, and had in fact spoiled it himself. He must have known this but, unwilling to assume responsibility or pay me fairly for a subsequent visit, he blamed me.

I wasn’t entirely unsympathetic — perhaps he thought his emotional decision was actually a rational one. I’d explained to him the dangers of modifying the job I’d done, but he’d insisted that he had to do so, and was therefore able to (wishful thinking). Clearly, he lacked the knowledge to troubleshoot his modifications and now expected me to do so. On the one hand, I realised I should have looked more closely into the terms of the job before I began; on the other, his decision was his own responsibility.

Recognizing that the situation was irresolvable, I decided to sever my link with him and suffer the consequences rather than proceed deeper into the mire of an untenable relationship. In seeing my own resentment in time and recognizing it as a red flag, I’d avoided wasted time, personal recrimination and more damage to my reputation. I’d also stopped enabling him to believe in his own non-existent skills and learned an important business lesson: to carefully consider the terms of any contract in advance. As any competent negotiator learns, that’s a skill you just keep revisiting; there are always new mistakes to learn from.

It’s all Connected

After a childhood spent unsuccessfully trying to believe in an invisible God who decides what happens in the world, I’ve settled into the notion that we — the actors in life’s drama —are the only ones responsible for what happens to us. We’re not just protagonists, but producers, writers and directors too. Far fetched? I don’t think so.

I live very happily in a modest house with my wife Caroline and Faith, our daughter. One way I contribute to that happiness is to work outside the home. Even though I could manage perfectly well in the basement, I’ve learned from experience that saving pennies that way blurs the line between work and home, and comes at a high interpersonal cost. Locking up the office and making my way home throws a psychological switch that outweighs the cost of rent and utilities by changing my mood each and every workday evening.

I hate traditional office space with florescent lights and sterile rooms, and rent a small apartment. It’s about ten minutes away and, with all the familiarity of home, gives me great personal space in which I can work, think and reflect at my own pace.

People who visit me there see the dense bookshelves and Persian rug—a gift from my dear cousin-in law Peter—and complement me on my comfortable workspace. To me too, it’s perfect place to spend my workdays. However, pry away the veneer and you’ll find a rickety old building with paper-thin walls, ancient plumbing and wiring and a completely out-of date kitchen and bathroom. It’s not a place I’d want to lay my head each night.

The owner’s an investment landlord who’s acquired many rental properties over the years. Some call him rich; I call him stressed. Other tenants tend to see him as a profiteer. I’m more sympathetic, perhaps because I’ve known so many wealthy people whose lives are unenviable; most worry about money far more than those from whom they profit.

I wouldn’t call him a slum landlord but, as you’d expect, he tries to maximize his income and minimize his expenses, principally by delaying repairs until absolutely necessary and finding the cheapest contractor for the job. Three years ago he reluctantly conceded that the roof needed replacing and hired Reg—a man with a quick smile, fast tongue and endless promises. This past weekend Reg finally picked up his stuff and drove away. It took three years, but the roof’s finally done.

Why it languished for so long is something I only found out this summer—not that I really wanted to know. For reasons I can’t fathom, the landlord and the contractor by turns opened their hearts to me with their grievances, apparently hoping I’d take sides and be sympathetic. I can’t help being sympathetic to misery, simply because as a fellow human being I know what it’s like. But it must be something of real consequence for me to take sides.

In all these heartfelt disclosures and undignified supplications for pity, I witnessed two men creating a reality that neither wished for. The landlord, anxious to protect his investment, browbeat the contractor into naming a price that left him with no room for maneuver and lots to resent. The contractor in turn hired the cheapest possible employees who stole his tools leaving him with a net loss before the work had even begun. He had no motivation to complete the job, and turned up only intermittently, each time after the landlord went to great lengths to twist his arm. The landlord, of course, was also under pressure from his tenants to get the job done, put an end to the roof leaks and clear up the endless debris around the property. Knowing what was going on, I didn’t add to this pressure; it wouldn’t have helped.

If, on the rare occasions that the contractor actually showed up, I was unlucky enough to bump into him, he’d talk my ear off explaining what an exemplary job he was doing and waiving away any suggestion that he might check the flashing, vents and eaves, none of which had seen the light of day in forty years. There was no end to his defensiveness and ingratiating smiles.

Periodically, the landlord too would pass by, weary and frustrated, looking upward worriedly, telling me how hard it was to make ends meet what with rising property taxes and such poor workmanship as this. The man has far more money that I’ll ever make, though I dare say that if it’s all tied up in sub-standard property like this, his headaches must be never-ending.

It all reminds me why I renounced such indiscriminate pursuit of money years ago. Even though I’m no longer living the high life of a monk and have to plunge my hands daily into chores and gainful pursuits, money itself is just a means to an end, something to be strategically balanced with the health and psychological wellbeing of my family; that includes me.

Everyone agrees that you can’t take it with you, but look around and you’ll see people everywhere acting as if they can, as if a big house is more comfortable than a small one, or that high prestige adds more to your happiness than to your stress. It’s a sickness recorded in the oldest annals of human history. It’s not cured by simply knowing better, and it can’t be fixed just by reversing your values — remaining poor is no solution either. In this sad and mundane scenario, the rich man and the poor man, each blaming the other for a situation they created together, suffer equally. It takes balance and wisdom to live the good life; it rarely happens by itself, and never by just assuming that since everyone else is chasing the almighty dollar, you should too. All it takes is a little reflection; why is that so hard to find?

The Office

If, in fifteenth century Europe, you were asked to attend The Office, you might well tremble in your boots — even lose control of your bowels — for you’d have been summoned to the Tribunal of the Holy Office of the (Spanish) Inquisition. Today, Quebec businesses are also called to account by The Office. Although it’s not the Spanish Inquisition — it’s the Office québécois de la langue française — it provokes fear, loathing and sometimes mild paranoia among Anglophones.

Last month I received such a summons myself. My Quiet Mind website, which advertises and supports weekly mindful reflection workshops, is in English only. Someone was offended enough by this to contact The Office and complain about me formally. I wasn’t happy about the potential inconvenience and cost of translation, but I didn’t lose a night’s sleep over it — let alone my bowels. Nevertheless, friends, relatives and students gasped in shock. They seemed to anticipate the sort of McCarthyesque injustice that periodically makes headlines in Canada. One imagines tenured bureaucrats with power aplenty, chips on their shoulders and way too much time on their hands.

This is the uniquely Canadian melodrama I was faced with when I landed here in 1982. I’d been studying at the École de français moderne in Lausanne and chose Montreal because it was French-speaking and would enable me to polish my nascent French skills. Despite immigration officials’ assurances that Montreal was sublimely Francophone, however, I found the city so bilingual that most people switched to English as soon as they detected my accent. Opportunities for practice were few and far between.

I was also confronted with the ‘two solitudes’ — willful non-communication, sometimes miscommunication, between French and English-speaking politicians, as if this somehow reflected reality on the streets. The recently elected Parti Québécois government wanted passionately to declare independence from Canada; its supporters were devastated by the defeat of their referendum. Anglophones breathed a sigh of relief but still lay awake at night worrying. The oft-repeated phrase about the county being ‘split apart’ projected an image of continental plates torn asunder. Indépendentists bided their time, rubbing their hands in glee as each big company fled Quebec. The insistence of the Office that business be carried on in French increased costs — from a business point of view, often pointlessly. Small mom and pop businesses closed shop and the commercial face of Montreal changed.

In the press and on television it sounded like war, but I found the Quebecois easy-going, decent and helpful — as most people are in relatively free countries. Admittedly, I was baffled by the notion of ‘protecting’ a language. After all, it can only mean what everyone agrees it to mean, otherwise it’s not much use, is it? Languages change and morph constantly; they have an organic life of their own. How can you legislate them? You might as well try to amend the laws of thermodynamics. I knew this from my own studies of Tibetan and Sanskrit, and even by comparing the language I learned in England with English spoken elsewhere. Each environment lends its own shape and inflections. My favourite version is Indian English — a transplanted, lovingly nurtured and enriched form of Queen Victoria’s vernacular. If I say so myself, I speak it well.

Anyway, this week I had to explain to the Office why I hadn’t conformed to article 52 of the French Language Charter, which states: “Les catalogues, les brochures, les dépliants, les annuaires commerciaux et toute autre publication de même nature doivent être rédigés en français.” (‘All other publications’ apparently includes websites.) I teach in English, and much as I’d like to in French, can’t do so with the same fluency. My French simply doesn’t penetrate the subtleties of idiom and story-telling, both of which I lean on heavily in my classes.

The conversation was brief. I explained that Quiet Mind was not a commercial enterprise, and that the revenue just covers expenses. In my best formal French I added that I have two commercial websites, both bilingual. Formal French is easier than vernacular. I’ve never managed a good, heated argument in French, but if I stick to technical subjects — I have good vocabularies for computers, grammar and the law — I can impress professionals and, apparently, bureaucrats. The lady I spoke to at The Office was charming. She complemented me on my French and assured me that as long as I taught only in English, a French website would be unnecessary. Finally she added that, if ever I chose to teach in French, I’d need to advertise in French too.

Everything had gone well until that moment. The implication was that, without the Charte de la langue française, it would never occur to me to advertise French courses for French-speaking people in French. She seemed to assume that, being an Anglophone, I’d naturally attempt to do so in English. I almost asked if she thought I was a complete idiot, but kept my mouth shut.

The question of indépendence and the primacy of the French language still dominate Quebec. After almost thirty years here, I still see little rationale for either sovereignty or federalism — only emotional partisanship. Anglophones can’t believe my impassivity towards the issue, not realizing to what extent the ‘two solitudes’ mindset has preoccupied their thinking. I see this as more of an ideological debate than a political one. But what do I know? I’m just a poor immigrant. I steer clear of the authorities when I can; when I can’t, I pull down the brim of my hat and maintain my ignorance.