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How Chronic Illness Helped My Relationship Grow

When people hear that my wife has multiple sclerosis (MS) and can’t walk, they cringe painfully. Sure it’s not good news—but they assume it’s a nightmare disaster of a situation with no upside, and that we can’t possibly have a life. They’re so wrong.

I always knew what to expect. Caroline warned me repeatedly, “Go! Save yourself.” She was being practical, but I didn’t care. Here was an empathic, intelligent woman who listened to my story and took the time to understand. The depression I’d been in for months fell away. I hardly spoke in those days, but she had me talking volubly and confessionally about my past, my present and my dreams. I was shocked by how many I still had, and she loved them. We were on the same wavelength! For the first time in years, I could breathe with another human being.

As our relationship progressed so did the MS. Its unpredictability is part of the pain. With very little neural feedback from her fingertips, Caroline can hardly button a blouse or put in ear-rings. Picking up a pill from a plate is an exercise in frustration, and getting it to her mouth is a game of chance. Everything is laborious. Falling over is a constant threat. It takes a full minute for her to open the fridge, reach for something and get it safely onto the counter behind her. So when she baked a beautiful Bundt cake for my birthday last week, you can imagine what that meant to me.

Being anxious to help, I sometimes make things worse. I see her struggling, take over, and leave her feeling helpless. Or she tells me to bug off. She feels perfectly healthy, apart from the things she can't do. Then I’m the one to agonize and feel helpless. An inner voice insists that I must fix the unfixable, and accepts no excuses. We don’t let any of these feeling fester. Everything’s up for discussion, making it that much easier to let things go.

Not everybody has MS, but everybody has something. Even if you’re in perfect health, you won’t stay that way forever. As for the emotional struggles of life, you can’t face them alone and come out unscathed. I tried. Even with eight ears of monastic training and the finest self-help tools, I got lost and didn’t even realize it until that unflinching conversation with Caroline. It goes on.

People say that as long as you’ve got your health you’ve got everything. Not many stop to think how that makes people like Caroline feel. I hate hearing it not just because it’s thoughtless—it’s also ridiculous. If you want a philosophy that helps you grow through life, you can’t just focus on the upside. The key is to face the struggle without losing balance. That’s what Caroline and I have been working on since the day we met. That’s what gives our lives meaning and that’s why her clients love her as much as I do.

Fake News About Mindfulness

Mindfulness is often thought of as a spiritual practice. Nothing could be further from the truth.

The practice of mindfulness begins in the body. Step One is to attend to your sensations—in other words, the electrical signals sent to your brainstem, as well as its relays back to the eye, ear, nose, tongue or skin. To see this without triggering a cascade of feelings and thoughts is very unusual, and you have to make a conscious effort to let go of thoughts—especially expectations.

Step Two is to attend to that cascade. Every experience—each in-breath and out-breath—feels like something. It’s fleeting. We rarely take time to notice feelings—usually only once they’ve ballooned out of control. However, it’s the other, micro-feelings, from one moment to the next, that trigger our most continuous, most unconscious reactivity.

Step Three is to attend to your mentality, and this takes poise. Thoughts, ideas and habitual patterns operate virtually at the speed of light; it’s hard to get even a glimpse of them. However, all that’s connected interactively to the brainstem. It correlates certain thoughts to particular feeling states. Your goal is to witness your reactions by being less defensive.

Step Four is attending to your whole world. That means the things around you, including the stuff you own, but mostly the world of society and the incredible variety of relationships that make up sentient life. Much of that life doesn’t simply happen out there. It’s rooted in interaction with you. First you identify the stimuli that trigger troublesome feelings, then you note your thoughts, let them go and return to the present. It's a repetitive practice, rather like strengthening a muscle. Similarly, without practice it loses its strength.

Mindful practice happens within these four tangible grounds. It’s something to get spirited about—at least, I think so—but it’s not spiritual, and neither is the present moment. The supernatural and the metaphysical do not lie in tangible space. Moments other than the present—the past and future—might be spiritual, but they're not here.

Let me stress that mindfulness is an ethical practice—something rooted in society and our relationships with others. The purpose is to understand and refine this embodied, socialized life on Earth so that we can live to the full and die in peace.

Mindfulness Live

In the four months since this class began, my whole outlook to it has changed. I was concerned about making such a commitment, afraid it would become too demanding. Like you, I’ve got lots of stuff to do—more than ever
It turns out I can’t wait for those meeting three times a week. I need them as much as anyone.

What we get in that thirty minutes isn’t spectacular at all—more like a raft carrying us from day to unpredictable day—and that’s the point. It’s typical in our society to overlook this, trying to avoid life’s uncertainty, to hope for the best. I mean, reality’s so damn heavy. Putting it out of mind does make you feel better for a while—or at least numb—but if you’re willing to really accept change and ditch denial, then life becomes something special: a once-in-a-lifetime thing.

Which is what we’re doing in Mindfulness Live. I log on to Zoom a few minutes before midday. The names in the waiting room are familiar now, and the faces. We know each other; we know we’re all different. Some enjoy Covid restrictions. Some hate them. There’s no disagreement, no judgment, no opinion. You’re not expected to feel what everyone else feels. This is a safe place for you to accept what you feel, and be accepted for it. You don’t get this sort of support too often.

The half-hour’s easy. You just listen. First, there’s ten minutes of guided mindfulness. I pride myself on always finding a new angle on the breath. Mindfulness is about taking time, not taking shortcuts.

Then I give a ten-minute talk—always about basics. So far we’ve looked at automaticity, thinking, motivation, empathy, self-compassion—the list goes on. These are things I’ve pondered all my life—I promise they’re worth the effort, and they’ll come up again and again. They’re fundamental.

Mindfulness is a continual reexamination of mind and body from as many angles as possible, a reminder that none of them is absolute.

We finish with ten minutes of guided reflection, and there’s a chat after for anyone who’d like to stay.

It’s just half an hour in the middle of the day, to remind ourselves to wake up to the unfathomable display of cause and effect, contingency and love, that we call life.

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How Free Can You Be?

Caroline and I went out this afternoon to pick up supplements. We ordered in advance; they dropped the order in the back seat. The transaction took seconds and we all wore masks. It was easy and organized.

So I wonder about those people who refuse to wear masks, who feel unfree when they’re asked to. I wonder what freedom means to them. On the way home, two cars pass us at high speed, one on each side, switching lanes without signaling, racing. They’re free, right?

There’s much talk of freedom in the abstract, but what does it really mean? I can be free of disease or free from dictators, but can I be simply free? Free of everything? It doesn’t make sense to me.

I’ve tried. My quest for freedom began when I left the Catholic Church. I was recruited by communists, who promised me freedom from exploitation. In time I realized I was more imprisoned by the patterns of my own mind. This led me to Buddhism, which promises freedom from suffering. That’s a big promise, but it’s still not pure freedom. I’m still subject to state controls, biological disease and the laws of physics. If I trip, I fall. Without air I quickly die. It’s galling!

Freedom is waved about like a talisman. On its own, it’s an empty word, but it’s used to justify pretty well anything—not using direction indicators; not wearing a mask; not accepting election results; not using your problem-solving human mind, even though there’s no finer tool in the universe, nor any greater pleasure.

The human mind also invents denial and uses it wantonly. People say there’s no virus, that it’s a hoax. I don’t believe them, but I’d like to understand why they want to believe this.

I discovered long ago that there’s no clear distinction between actually believing something and wanting to believe it. I believed in reincarnation not because I was overwhelmed by evidence but because I’d decided to become a Buddhist. Reincarnation was part of the deal. Perhaps I never actually believed, but it’s hard to say. I obviously allowed for the possibility of reincarnation in my thinking. Otherwise, I’d have made no sense to my fellow-Buddhists. What does it mean to really believe? Jeez.

I eventually gave up on all belief systems, including Buddhism. The Buddha himself advocated objective self-reliance—the opposite of believing what suits you. Scientific studies* show that the vast majority of decisions are made emotionally and only then rationalized—if at all.

We always have the option of bringing reasoning and evidence into our decision-making—but it’s unusual. When designing a building or a vehicle we can’t avoid it, but when arguing with your spouse or baffled by the kids, we tend to go to our default expectation, judgment and reaction. It’s intellectual (and moral) laziness—but we all do it. We think things through far less than we imagine.

Those who say Covid-19 is a hoax distrust authority because they don’t wish to be like sheep—unfree. But is that really all they want—to not wear masks? If they’re looking for pure, total freedom they’ll have to think a little harder. They may find some deeper issue they’re not addressing—something emotional.

It’s enough to put you in denial.

Bye-bye 2020

What a year! Not exactly one we want to commemorate, but unforgettable—a game-changer. Life as we know it stopped. There’ll eventually be a new normal, but it’ll take some getting used to.

Let’s not forget that change itself is normal. Even pandemics have their time and place in the saga of human history. It’s a reminder that our species, like them all, is temporary.

This thought may paralyze you, but humility would be a more useful response. Ever since the authors of Genesis gave us “dominion” over the Earth and its inhabitants, we’ve been taking it for granted.

Humility

We think it’s up to us to determine the future of our planet and our race. We have a say, but we certainly don’t have our hands on the controls of creation, and thank god for that.

Life is wonderful and exciting when it’s not terrifying and forbidding. It’s by remembering both these possibilities that we keep our balance. Rather than considering ourselves the dominant species who will wrestle Covid to the ground, let’s just be grateful each morning to wake up and draw breath. This pandemic will end, but there’ll be others.

We’re just fragile individuals of a fragile race. Remembering that is not depressing. It’s sane, and my prediction for 2021 is that our sanity will continue to be tested.

Please care for yourself and for those around you. Take nothing for granted. Be satisfied and grateful. It’s a wonderful life, if you care for it.

A New Way to Learn

For me, mindfulness isn’t just a way to stay calm. I was still a young man when it became the most important thing in my life, even though no one else had the faintest idea what I was doing. Nothing was harder for me than living in the moment, and yet there was nothing I wanted more.

The first time I really ‘experienced’ the present moment I couldn’t believe it. It was so simple! I thought I’d ‘got’ it—but then I forgot. That's when I saw where the real practice is—walking through each day with your eyes wide open, balanced between focusing and letting go. If you don’t use your newfound skill, you lose it.

Caroline and I have set up Mindfulness Support for two reasons: First of all, we want you to understand the full potential of this practice and how different it is from ordinary meditation. After all, it does much more than manage stress. As mindfulness enters your life, you're increasingly able to identify and let go of the reactive patterns that keep hurting you.

Secondly—most importantly—we want to help you actually do it, day by day, week by week. No matter how much you understand, it only works when you practice.

Our dream is for you to sit down every day for at least a few minutes to check in with yourself. Join us on Facebook. You’ll meet other people who care like you. There’ll be posts and comments, and you can ask questions at any time; I’ll answer within 48 hours.

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For those of you ready to build a regular practice, we offer Zoom meetings three times a week, at 12-noon ET. There’s a whole free month for you to see or yourself if you like it or not. After that, you’ll be hooked, and mindfulness will be something you won’t want to live without any more. And why should you?

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Both Caroline and I have had difficult lives, but with the help of people like you we’ve been inspired to take every obstacle as an opportunity to learn and grow. We want to help you do the same. No one really ‘learns’ mindfulness from someone else. We know that. Only experience can teach you—and we also know the indispensable value of a support system that works, along with an experienced teacher and a clear way forward.

Mindful Reflection #15: Trust

Trusting others is one thing. Trusting yourself is something else completely. Logically, we all know that we should trust ourselves before anyone else, but how do you build that sort of confidence?

Stream or download this recording below.

Cracking Open the Closed Mind

It’s been a bad year, out of control. As if Covid-19 wasn’t enough, we’re faced with extreme denial—a rotten stew of conspiracy theories and lazy thinking.

People on opposite political sides are mostly in the business of getting their biases confirmed. On both left and right, most see what they want to see and avoid what they don’t. They act as if one side’s always right and the other’s always wrong. It’s childish and absurd. It’s also corrosive. The periodic switching of governments between left and right has been the engine of political debate since the first parliament in 1215, but now respectful exchange has turned to cynicism—a social cancer. In the States of America, and in other countries too, large portions of each side believes the other is evil. This is leading nowhere good.

What can we do? Tell people they’re in denial and they’ll just deny it! Which brings us to the question of the day—how to talk to the other side?
I learned from my debate teacher Geshe Rabten that the best way to win an argument isn’t to challenge your adversary’s ideas. Rather, you question them, drawing out each argument and exposing every weaknesses until they contradict themselves. Hurling your truths at them just hardens their position.

You get into the other person’s head with empathy. It doesn’t mean you agree with them, only that you listen without letting your own beliefs get in the way. It’s exactly the same open mind you need to do science—no prejudice, no expectations. It doesn’t come naturally. You have to pry the mind open, especially when it comes to ideas you personally identify with.

Confirmation bias is a natural human instinct that we rely on every day. The more it operates unconsciously, the more ingrained it becomes. On the other hand, mindfulness over time brings it to the surface. It loses its power, and objectivity becomes an option. It’s not easy to see your own biases. It takes a sort of awakening.

For example, speaking recently to a lady who supported Donald Trump, I asked, “Do you think he’s a decent man?” She was visibly stressed by the question, and went to great lengths to avoid saying ‘no.’ However she couldn’t bring herself to say, ‘yes.’ Her confidence was shaken; a chink of daylight got it. I don’t need her to agree with me. I just want her to doubt herself, and I want the doubt to sink in. Why bombard her with ideas she already hates?

Two promising vaccines were announced this week and it looks like there’ll be an endgame to Covid-19. Deniers, however, will always be with us. You can’t just shoot a vaccine into their brains. They have to see their own biases and confront them with honesty and humility. Most people will never do this, but there are always some, as the Buddha put it, with little dust on their eyes.

That would be you. So go out there and create some mindful, empathic chinks. Make them doubt themselves. Go on, I know you can do it.

Sam’s Life: What’s the Point?

Sam’s an interesting cat. He darts out of his room each morning as soon as I open the door, then loops right back to nuzzle my hand before he completes the circle back to the foot of the stairs. Before I even get there, two steps away, he’s remembered the scratching post! Back he goes to embed his claws in the sisal—you’d think he’s trying to pull them right out of his paw. By then I’m half-way upstairs and he flies past. I hear the pitter-patter but his feet are a blur. He literally seems airborne. Don’t you love the way cats move?

Sam
Sam

By the time I’m upstairs he’s on his butt licking his crotch. This has nothing to do with personal hygiene. It’s a message: “This is my domain.” This morning, yesterday morning, the morning before—always the same. Next, breakfast; to be followed by sleep, play, etc. You can set your watch by his rituals.

That’s how Sam keeps body and soul together—automated brain patterns. My primary school teachers, all Catholic nuns, insisted that animals have no souls. I never believed that. Animals don’t have our cognitive skills, true, but so what? I don’t think Sam worries about his existential condition nearly as much as I do. Pet-owners often envy their pets you know. It’s funny how often this comes up in mindfulness classes. They say their animals are more in the moment than they’ll ever be!

My Buddhist teachers explained how cognitive skills enable us to upgrade learned behavior and free ourselves from it. It’s a tempting idea that I’ve found to be true—sort of. What they didn’t explain is that freedom is relative; you have to keep working at it, and of course you’ve got to be pretty clear about what you’re freeing yourself from. That’s the hard part.

The question of meaning nags at our species. We’re so obsessed with our vast cognitive powers (I’m not being facetious) that we keep trying to put it into words. A million theories and beliefs, but nothing agreed. However, one look at human behavior shows consensus. Forget about what we should do and look at what we do do. What fulfills us more than any idea? The feeling of acceptance, love and communion that we get from connecting to others.

Ziggy

Sometimes, Sam looks up into my eyes, just like his brother Ziggy here, and sends a shiver up my spine.

The Food Habit

Just over six years ago, Caroline and I changed our diet. It was pretty dramatic. I’d grown up in an Italian kitchen and she in a Lebanese, both of which lean heavily on grain and dairy. Now we quit gluten and dairy. And oh yes, sugar. We had to learn to cook—and eat—all over again.

This is the Wahls Protocol and it’s for people with autoimmune disease, like Caroline’s multiple sclerosis. We first heard of it a couple of years earlier. It was radical. No more pasta and Parmesan? What—not even baguette and Brie? We couldn’t imagine! We toyed with some of the recipes. I bought a dehydrator and made some kale chips. It was a laugh. We forgot about it. Finally I put the dehydrator up for sale on Kijiji.

Two years later MS fatigue and vertigo were taking a toll on Caroline and she was spending whole frustrating days in bed. The doctors had nothing for her. We finally went on the diet, and it paid off almost immediately. Caroline gained energy, and we both lost pounds. We were motivated, which was just as well because it turned our kitchen upside down. Old recipes were useless. Our favorite dishes—especially the convenient ones—were off-limits.

Caroline was on her feet again and that’s what mattered. But we learned more. Twenty-first century eating isn’t just about fueling up. We now became intimately aware of our comfort foods and the cravings that drove them. Our expectations of various food and our reactions to them are expertly manipulated by slick marketing that targets the instinctive reward system. We get stuck in a vicious cycle of craving high-calorie food and then eating it, only to crave more. At the same time, I realized that to disconnect those triggers I had to shed a nostalgic connection to my childhood self.

In time the carb cravings eased off. I started to experience the satisfaction of a full stomach for the first time in my life. After a meal, I was done. This surprised me greatly. I’m not sure I ever really believed I’d quit pasta, let alone sugar. Growing up in Dad’s restaurant, food was a sacrament to be treated with reverence and longing. I could limit my plate of pasta, but I never wanted to. There was no satisfaction. My two sisters, brother and I all emerged into the world with refined tastes and a profoundly sweet tooth. We identified personally with our foods. My brother’s cassata was to die for. My sister’s tiramisu was divine. You get the picture.

Now consider what the great cultural anthropologist Margaret Mead said: “It is easier to change a man’s religion than to change his diet.” She wasn’t joking.

This is even more true when you’re dependent on processed foods—pretty well everything on a supermarket shelf. They’re engineered these days by taste experts, the same way apps are engineered by attention experts. They want you addicted. If you can’t stop, don’t blame yourself—and don’t take it as a personal failing. Consumer marketing has you in its sights. It targets your most basic hard-wired salt and sugar reward systems, associates them with dreamlike images and creates expectations that just can’t be satisfied. It takes more than brute willpower to step out of that vicious circle. You need a real-life motivator and—no less important—support.

After twenty-eight years, Caroline’s still on her feet because she’s a member of the MS Gym,* as well as Wahls Protocol groups. Members exchange their challenges and achievements. They get feedback and encouragement. She’s connecting to people in her shoes who care, and who are trying just as she’s trying. They’re not just experts, although some of them are. They call themselves MS-warriors. They’re awesome.

Ever tried changing your diet—perhaps your entire lifestyle? I’d love this to become a conversation. Please share or comment below.
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* Check out Trevor Wicken, an extraordinary MS resource.