Category: health

By Caroline Courey, special to The Naked Monk

Like everyone, I sometimes find myself in situations so difficult that I don’t want to admit they’re ‘situations.’ You can’t face your fears without admitting that you have to do something about them, and that shuts us all down from time to time.

The hardest thing I ever had to face was my diagnosis with multiple sclerosis. All of a sudden my rosy future seemed so bleak. I wondered how I’d continue to be productive as a wife  and mother, how I’d continue working and hold my head up. I was profoundly scared and ashamed of becoming a burden, especially on my husband. Although I had to deal with attacks from which I generally recovered, and was still productive, I found myself too often dwelling on my horrible future. It was a dark cloud over my head. With every attack I felt more helpless, closer to becoming an invalid.

I entered a support group, then formed a local support group and found myself on a quest that guided me with tremendous focus. I found the courage to face my situation head-on, and began to see the other side of the picture. I was still walking, I could still think, I could go to school, and did. I wrote my book Crossed Signals (a novel about MS in the family) and presented it in high-school classrooms along with a workbook. This all gave me purpose, direction, focus. I even decided to embark upon a new career in pursuit of a new, long-term foundation.

I began to feel very fortunate.

Through founding and building Quiet Mind Seminars with my husband, and through my own training as a personal life coach, I learned to face the reality of my fears on a daily basis. I recognized how I tended to project my version of the future into the present as if it were a reality. It wasn’t, but this is a normal tendency. It seems easier to resist reality than to face it, but the cost is high: to be trapped by it and see only the nightmare, not the hope. There’s more to facing reality than just the words. Being aware of my body and my anxiety is just the beginning. To embrace all the good, I have to embrace the bad too, with all my strength and all my heart.

I’m twenty years into that diagnosis now, and my prognosis has changed from on-again, off-again relapse-remission MS to secondary progressive MS — a steady decline. I’ve learned to revisit my anxiety every day, especially when my hands don’t work, my muscles are stiff, legs give way or any number of symptoms happen to appear. Facing my fears means facing a constantly changing reality. This is my lot. I can let it stop me, as it does so many, or I can move on. Every day, I choose to move on. With every step forward I gather momentum. Even as my body fails me, my mind grows stronger; my appreciation for the opportunity to understand and help others grows deeper.

Through my experience teaching people with chronic disease at the MUHC, through coaching my clients through transformation, I learned that life is always a challenge, always a mystery, never predictable. Sure, I have a serious problem. Who doesn’t, sooner or later?

Coaching is not about rah-rah; it’s about getting the support you need to face things that otherwise seem unfaceable. I’m immensely grateful for the support I’ve received from my family — not just sympathy but challenge and wisdom. Nothing makes me happier — and stronger — than to give that same support to my coaching clients.

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Caroline Courey is founder of New Way Life Coaching and co-founder of Quiet Mind Seminars. Visit her website at www.courey.com.

Stillness is the master of passion
—  Tao Te Ching 26

“You teach meditation? I need to do that. Where can I find out more?”

So say many people I meet, though few actually sign up. “I’m going through a busy time at work,” they say; or “that’s hockey night.” I’m sure they’re telling the truth, but I’m also sure they’re avoiding the point.

Quiet is intimidating.

Some of the time we really are busy: creating, studying, engaging with people; we may work simply because we’re good at it and love surfing that tide of accomplishment. Other times we relax in front of the TV, read, chat or play games. We’re always driven to do something. We occasionally call it passing time, as if we have too much on our hands; as if time will never run out.

So who can imagine a greater laziness than sitting around doing absolutely nothing — not even thinking. Calling it laziness is yet another evasion, a way to justify avoiding silence. Blame the Protestant Ethic if you want, but the real reason we stay frantically occupied, even when we’re trying to de-stress, is because the human mind abhors a vacuum.

I knew someone who couldn’t even sit in the back seat of a car on a long-distance journey without creating conversation. She had nothing in particular to say; it was all about avoiding the spectre of discomfort, as if without words her very existence was unjustified. For her, silence was hell.

It isn’t always driven by neurosis. Filling a lull in the conversation at a cocktail party may be an act of compassion, but an aversion to silence between friends, even spouses, is disturbing. Where’s the comfort in that — or the trust? Sitting in silence with others is profoundly liberating. Try it and see.

It’s also profoundly healing. I started meditating over thirty years ago. It changed my life and gave me a new outlook to which I credit my hard-earned emotional balance. When the time comes to sit and do nothing, however, I still sometimes experience an inner cringe — a pulling away from the brink. As I settle down the feeling evaporates, but never completely goes away; there’s always an urge to scratch, or get up and make tea, or catch up on one of my never-ending projects. We seem programmed to keep busy, to not face the cacophony of our own mind.

Cacophony? Wait — weren’t we were speaking of silence? Well, as you’ll know if you’ve tried, it’s not that simple. Sitting in silence for more than a few minutes confronts you with the relentlessness of the inner chatter. “Empty your mind of all thoughts,” says the sage. Great idea; I want to. But does it happen for more than a few moments? And are those moments really empty?

Such is the dilemma of the goal-oriented meditator. To measure your success and make sure you’re on track, you need to think about it. So are the skeptics right? Is all this navel-gazing just a load of rubbish?

Ah! More potential excuses. Yes it’s a load of rubbish. No, it’s profound truth. Both are thoughts; both pre-empt silence. You can’t argue yourself through meditation — well you can — and at the beginning you will, trust me— but you can definitely do better.

“Just sitting,” is a how they put it in Zen; ‘just,’ of course, meaning nothing but. Again, the mind protests, argues, cajoles, resists, cries, threatens — all thoughts, all to be relinquished.

Meditation is trickery, plain and simple. You aim at silence, but expect noise. Gradually, you gain the habit of letting go, and you see that even the most conflicting thoughts are all of the same stuff. They merely occur to you; they are not you. Thus, you step away from them. Under pressure like this you might try to counteract bad feelings with ‘good’ thoughts. Letting go of these too leaves the feelings more nakedly exposed and helps you — rather than manipulate them (which never works anyway) — to accept them. Feelings too come and go. They are not you.

Choosing to not hang on to thoughts and feelings is the freedom of meditation, and therein lies the healing. Whether you achieve complete silence isn’t the point. It’s the letting go that counts. You want to make a habit of it. Don’t worry; it won’t stop you from thinking, any more than letting the leaves settle stops tea from being refreshing; it just brings more clarity.

Thanks again to everybody for all your kind wishes and inquiries about my health since the veinoplasty procedure in December. I know many of you know, or know of, someone living with MS, so I’m more than happy to share the latest developments of our harrowing, exciting journey.

As soon as two days post-surgery I experienced energy and strength not seen in years in my core and legs. It was quite remarkable, and rather hard to believe. Stephen saw it himself when we went on our first walk in over a year (I gave up walking when I couldn’t make it down our street). We stared at each other in amazement and laughed with excitement; it was strangely surreal.

Christmas was truly wonderful. I was able to enjoy the entire week with my family with unbounded energy and joy. My kids were so surprised and happy. What a gift!

In all my exuberance however, I must have overtaxed my body, because I caught a nasty cold. My newfound energy faded along with the exhilaration and hope.

With the cold mostly gone, I’m happy and relieved to report that the new strength is returning. Not as dramatic as that first week, but there are definite improvements in my gait, stamina and balance. I’m back on the treadmill, and slowly incorporating new exercises into my workout.

The MS is far from gone; the tactility and dexterity of my hands hasn’t improved and I still have fatigue — though not the old, debilitating, total exhaustion. I’m in no way as stable or strong as a ‘healthy’ person of my age — but that’s OK, this is far more than I expected. My hope was that the surgery would halt progression of the disease; at my late stage (eighteen years since diagnosis) I hadn’t even considered the possibility of improvement before this procedure. Every day I feel blessed having this opportunity for a better quality of life, even if it only lasts for a while.

Doctors don’t know the duration or extent of these improvements, assuming you’re fortunate to have improvements (not everyone does). They don’t understand much at all about this procedure, except that many people feel better and that there’s enough evidence to warrant further study. Some studies are already underway in the US and around the world — in pretty well every country except Canada. It’s too bad the MS Society of Canada and the Canadian government are lagging so pathetically behind. Liberal health critic Ujjal Dosanjh and fellow MP Dr. Kirsty Duncan launched a blistering attack on the Canadian Institutes of Health Research and the Multiple Sclerosis Society of Canada in the January 4th edition of the Vancouver Sun, and there’s talk of a class-action lawsuit against them for both damages and criminal negligence, though no one has so far actually initiated this daunting task.

Nevertheless, the procedure is available, and it’s all because of one man — Dr. Paolo Zamboni, whose determination and love for his wife, who suffers from MS, may have finally begun to unlock the mystery of MS and provide relief to over two and a half a million desperate people.

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

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.

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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