Author: Caroline Courey

I met my new MS neurologist last week. My old one retired, thank God. Every time we met over 20 years, I left his office feeling helpless and hopeless, sometimes in tears. He was gentle enough, and quite kindly, but my final meeting with him last year was the worst. He saw I was better but wouldn’t acknowledge it. He implied I was lucky.

I’ve lived with MS for 27 years. It’s a chronic inflammatory disease that, about 6 years ago, was progressing fast and taking away my quality of life. That’s when I was ready to take what seemed like a desperate step: to go on The Wahls Protocol.

Dr. Terry Wahls is an MS patient herself. She devised a gut-health protocol of diet, exercise and meditation. Within three months my most debilitating symptoms—vertigo, extreme fatigue and dizziness—all stopped. I regained energy and stamina I hadn’t had in ages. My blood pressure had crept up to and I’d been on medication when I started. Within a year my BP was normal and I was off the meds. I lost twenty-five pounds too.

The diet was one part. Then there was the exercise. How? What sort? How to deal with spasticity, balance, pain, walking?

Then in 2017 The MS Gym went online. What a resource! Coach Trevor Wicken explains clearly how MS affects muscles and movement. My doctors never even suggested I learn this, but it’s invaluable. Now I understand what I can do to counteract it. The MS Gym also provides emotional support, weekly motivational videos and a community of people like me. I’m no longer in the dark as to what’s going on in my body. The fact that MS is irreversible does not mean there’s nothing you can do. Tens of thousands of people also on the Wahls Protocol and the MS Gym are seeing significant improvements too.

My former doctor said bluntly that diet and exercise were not relevant to my health. He never ever suggested any sort of education, and his idea of emotional support was a pat on the back. I was so infuriated after my last visit that I wrote about it here in my most popular post to date: “The Healing Power of Hope.”

It seems I’m not the only one frustrated by closed minds in the medical establishment. Don’t get me wrong, a skeptical attitude is key to scientific knowledge. But claiming that diet can’t affect health is both antiquated and irresponsible–especially when it comes to chronic disease.

So here I was with Stephen at the new offices of the new doctor. The waiting room was bright and cheerful. This was an improvement over those old windowless offices. I was encouraged and a little excited. Perhaps we’d meet younger doctors here, with a broader perspective. After all, mainstream medicine has confirmed the complexity of the microbiome and established a definite correlation between gut health, inflammation and quality of life. It appears to be particularly significant in chronic illness.

We were greeted by two young neurologists, a somewhat older male doctor and a younger female intern. I told them enthusiastically about my lifestyle changes over the past six years. They nodded politely but we could see an invisible line. They weren’t crossing it.

The examination is a series of standard tests that measures your disability score. Although I have secondary progressive MS, the disease didn’t worsen since my last exam. In fact, I feel better. It’s not supposed to happen. Predictably, they chalked it down to good luck.

Stephen asked, “So are there any breakthroughs we should be aware of?” The young intern brightened up and offered a new drug that might improve my walking by 20% or so, but could cause seizures and harm my kidneys. And I’d have to take it for ever.

Seriously !?

I had another question. “How do you support your patients through the emotional, mental and physical turmoil of MS? What do you offer besides drugs?”

For a moment there were just two blank stares. Then the young woman admitted that yes they could use some help with that. She took my card, though I’m not expecting a call.

She did say that exercise helps more than anything, but she had no idea what kind of exercise. How to do it, where to find a good therapist? Exercising when you suffer from extreme fatigue, spasticity and pain requires a lot of support, but all they offered were drugs. Neither had ever heard of Dr. Wahls, or the MS Gym. They seemed unaware of any non-pharmaceutical approaches. I felt bad for them, and worse for their patients.

Doctors are amazingly educated in some ways and astonishingly ignorant in others. We patients want to think of them first and foremost as healers, which means understanding and empathizing with their patients. But when they focus on science to the exclusion of people they undermine their own healing powers.

People with chronic illness need tools to navigate the rest of their lives. We need to know what’s going on in our bodies, and learn about ALL our options so we can make better decisions for ourselves.

We’ll meet again in 18 months. It’ll be interesting to see if they make any progress.

Last night I asked my husband/mindfulness teacher/former Buddhist monk/ghostwriter/all around thinker, ‘When did you first start liking yourself?’

He went silent, scratched his chin, looked at the ceiling and said, ‘No one ever asked me that before.’

I was intrigued to catch him off guard.

He may be one of the most skilled mindfulness teachers, with four decades of teaching/ training/writing under his belt—but you don’t become a Buddhist monk for fun. He was in crisis when he got there. It saved his life!

Over our 20 years of conversations we’ve probed tough areas, shared our most vulnerable sides and grown. This ‘risk-taking’ is the foundation of our intimacy and trust. I knew that question would trigger something—and it did.

He realized that he started to like himself at age 13 and recalled the event that triggered it. He was delighted! Then he asked me. When did I begin to like myself? It got me thinking. Did I ever not like myself?

I grew up painfully shy, self-conscious and uncomfortable. Maybe I didn’t like myself but I didn’t look at it like that. I was just, me.

When I was fifteen, peers who struggled with family, friends or school, sought my advice. I was their safe place to vent and get a new perspective. This was different. I remember thinking, ‘Wow, what do they see that I’m not seeing?’

I think I started liking myself when I saw my value in the eyes of others.

Neat exercise, right? Positive thinking and all that. But the exercise didn’t stop on this pleasant thought. I next noticed deep anger at myself for making bad relationship choices. ‘Not liking’ myself was putting it mildly. Some decisions hurt others too.

Even after everyone else moved on, I was still holding onto anger and disappointment. I’d ‘fly off the handle’ over trivial things. Intellectually I knew I had to forgive myself. But how?

The answer is: through conversations like this one with Stephen. Forgiveness and deeper insight don’t come by talking once. ALL the conversations where I feel supported, not judged, enabled me to shed my burden. Even my body feels energized and stronger as I express myself.

One of the best results from all this is my ability to speak up guilt-free and without fear of hurting others or creating conflict. I take a ‘risk’ to express what matters, because I MATTER!

If you judge yourself this may be your starting point. If you’re hard on yourself, you’re not seeing the whole picture of who you are and who can you can become. Don’t you owe it to yourself to find out?

If you are carrying anger, resentment, fear, what have you tried, to alleviate your discomfort? Maybe you’re waiting for things to improve on their own. How’s that working for you? There may be a better way.

Imagine spending one day with your great great great grandchildren. What would you want them to know?

Yesterday as I was staring into the eyes of my beautiful five week old granddaughter my stomach started to knot. ‘The world’s so scary. How will Mackenzie be happy, safe and productive?’ I know every generation has the same concerns, but today feels different. We and our planet are more fragile than ever. This realization takes a huge emotional toll.

I took a calming breath.

In her eyes I see my life reflected back. My hopes and dreams, failures and successes, the love and pain, the passion to inspire and empower. I want her to know how living with Multiple Sclerosis turned me into a warrior, and helped me fight for what matters in life. I’d like her to understand resiliency, determination, self love and empathy and be mindful of them. You learn that mostly from people who love you.

My story is not particularly unique. There are dozens of self help books, memoirs, and articles out there. But imagine those stories coming from your own ancestor, who anticipates your reaction and your questions.

Someone you never met who becomes familiar —an influence.

I never knew my grandfather George. I always wished he could appear in my kitchen,where we have all our best family discussions, so we could have a good family chat. I’d ask him about what he believed, what motivated him, what were his dreams and fears? Was he satisfied?

He came to Canada from the Middle East at age fifteen. Before that, they say he lived with his mother and brother in a cave in the hills of Lebanon. How did that shape him? What was it like? Although penniless, he convinced the ship’s captain to let them take the perilous journey providing he cook for the crew and passengers. Once here, with no English or French, he figured out how to survive as a street peddler.

How did he make that work? Wasn’t he scared or lonely? Who helped and influenced him? My father, one of George’s seven children, always told us stories about his father’s fierce devotion to his family, to provide and protect, not only in his lifetime but for generations afterwards. A hundred years later the business bearing his name is an industry leader, still run by family. The compound he built in the Laurentians is still filled with cousins and new generations of Courey’s.

George is a family legend. We all know the landmarks of his life, but what about how he felt? He was respected for his integrity, kindness and generosity, but what made him that way? He left a material legacy, but what wisdom did he acquire? Sometimes I feel connected to him, and sometimes he’s a puzzle. I wish I had more to go on.

Especially now as I look into precious Mackenzie’s eyes, relishing every moment knowing that all this is fleeting. It’s new and exciting. What I want for her above all is a healthy self image. With it she’ll grow emotional intelligence, and hopefully live a meaningful and happy life.

Soon enough she’ll start speaking and thinking. We’ll have deep discussions about everything! I want her to benefit from my mistakes and insights, and one day pass her own wisdom down to her grandchildren. Then perhaps, I’ll appear in their kitchen for a nice family chat!

When my grandson was born last month I immediately offered to go down and help them out. It’s not negotiable. I’m going.

But wait, I have multiple sclerosis. Isn’t that rash? Aren’t I overextending myself? Will I be able to handle it?

On the other hand, how can I say no? It’s my first grandson! They asked me to visit for a month and—well, what else am I going to say? It’s what I want.

Back in the real world, I face challenges every day, and have learned to push my way through.

How complicated? First, they live in Florida. Second, baby’s not a good sleeper. Neither am I! In fact I’m an insomniac. Nothing’s more important for my health than sleep. One bad night can trigger all sorts of MS symptoms.

I’m excited and nervous. Will I cope? Will they end up having to take care of me? I try not to indulge my worries. I’m determined to be the best grandma I can be, whatever it takes! I want to be there for all three of them.

The nervousness remains, but I’m more aware of what to look out for. I used to always push myself beyond my limits, until I realized how important it is to set aside me-time. I’m still amazed at how a little change in my routine increases my energy and positivity. Small things—like going out with friends, having a facial or making a date night.

“But you’re not getting stuff done!”

OMG, that voice in my head! Getting stuff done may feel good—and it’s important too—but equally essential for your mental, emotional, physical and spiritual wellbeing are periods of not-doing, or doing with no particular goal. IT’S NOT SELFISH. It’s maintenance. Everyone benefits from your improved balance.

I can’t afford to burn out. My family and clients need me to be present, focused and sharp. They care about me. Is that why I tend to keep going even when it’s time to stop?

I realized the problem is not my family, clients or circumstances. It’s the expectations I have of myself. If I’m not doing something perfectly right, I judge myself harshly. Why? Too prove what, and to whom? What makes a great grandma?

Questions like these helped me see the insecurities I was hanging on to.

Seeing them changes everything. It puts them within reach, so I can let go. I told my kids (the parents) what I was feeling. They understand how MS affects me and are ready for the unexpected. It’s not a problem for them. They want have me in his life in any capacity.

Looking at it like this quiets the inner critic—that nagging voice telling me to be who I’m ‘supposed to be.’ Talking with someone helps me stay objective.

What have I done to not overextend myself? I paid extra for flexible flights—just in case. I reminded my son and daughter-in-law that I’ll need to rest in the day. What else? Perhaps it’s not so complicated after all.

Meanwhile, they’re making contingency plans. Stephen’s coming with me too, but can’t stay as long. We’ll have a blast being first time grandparents and we’ll find out what I really can and can’t do when I’m alone with baby.

Now I can stop worrying about what might go wrong and focus on the joys of this little miracle. I can’t wait!

When my children were 1,4, and 7 years old their father left Canada and never came back. My purpose in life was suddenly to protect them from the emotional pain of rejection and provide a stable happy childhood. Needless to say, my ‘plate’ became very full!

I went back to school but an MS diagnosis got in the way, so I quit. I couldn’t juggle school and their needs.

I continued to put myself last until the disease became unmanageable. My priorities had to change. The children needed me to be well, and ‘there’ for them. I couldn’t bear the thought of them feeling disappointed or abandoned again.

The immediate obstacle to taking me-time was guilt for saying no even if I was exhausted. I was afraid that they wouldn’t love me the same way. Would they blame me, or be scared? It was already so confusing for them.

When I finally learned how to put myself first everyone benefited! I had more energy and stamina. People respected and appreciated me more—not less. Best of all, I was a positive role-model to my children, a living example how to face uncertainty and any challenge head on.

Studies show that people who prioritize their needs are happier and smile more. They have less fear, stress, and resentment. They have better relationships too, because they’re more present for others.

In my upcoming self compassion workshop Stop Putting Yourself Last! we’ll explore why we have such a hard time putting ourselves first, and learn self-care tools that feel right without guilt or fear of conflict.

I fall. Sometimes every week, sometimes not for months. It depends on two things: sleep and exercise. The problem is that I, like 30% of Canadian women, suffer from insomnia. Poor sleep prevents me from exercising, which is what helps me feel strong and walk better.

When my foot doesn’t lift properly (‘foot-drop’ is an MS thing), my toe catches on something and down I go. There’s a primal scream followed by a sickening thud—at least, that’s how my husband describes it. I feel bad for being helpless. Every time I fall, he and our daughter are traumatized.

To me it’s surreal, all in slow motion. As I’m going down, I realize it’s not stoppable. My body instinctively lets go. It’s a sort of surrender. No room scares me more than our bathroom, with its sharp corners, hard tiles and ceramic floor. Last week I fell in there for the first time, but besides some aches and pains there was no real damage. I wonder if perhaps that instinct made me less prone to injury.

It made me think about letting-go. My clients want to let go of anger, worry, self-doubt, putting themselves last… They learn to let go of the habits that undermine what they really want.

It’s hard work. I have to keep up my strict diet and vigorous exercise regime. It’s frustrating —especially when momentum’s constantly interrupted.

That’s when I think about the people who come with their insurmountable challenges. I’m always awed by the enormous courage it takes to confront your own struggle, but together we do great work and they accomplish their goals.

So I too can let-go of the urge to quit the fight and—like the Sinatra song, I get back up, dust myself off, and start all
over again.

Ever notice how your body feels when you’re upset with someone? When I’m in conflict with someone close, my body feels drained, my mind distracted, I don’t eat properly, work seems harder.

Did you know that the largest contributor to conflict in relationships is poor communication. Maybe you don’t feel heard, there’s constant arguing, nothing changes, and the biggie— you both are acting defensively, pushing each other’s ‘buttons’. Poor communication can chip away at our self esteem and self confidence. How can this be good for our health?

We see from personal experience the connection between good or bad communication and our relationships. Now there’s scientific evidence to support the link between good relationships and a long healthy happy life.

A Harvard Study of Adult Development is one of the world’s longest studies of adult life that looked for clues that lead to healthy and happy lives. It began at Harvard in 1938 and continuing today with a second generation study.

“The surprising finding is that our relationships and how happy we are in our relationships has a powerful influence on our health,” said Robert Waldinger, director of the study, a psychiatrist at Massachusetts General Hospital and a professor of psychiatry at Harvard Medical School. The study showed that close relationships, more than money or fame, are what keep people happy throughout their lives. They are better predictors of long and happy lives than social class, IQ, or even genes. * article from The Harvard Gazette read here

When in conflict with your partner, family member, colleague… what do you notice about the way you communicate with each other? This is not about judgment or blame, it’s about seeing what is going on.

Awareness of ‘what is’ is the first step to change.

Is there trust, honesty, openness and mutual respect? Is someone trying to be the winner? That can’t work since someone winds up the ‘loser’. It’s not a competition.

Relationships are built on compromise and on finding solutions of mutual benefit, caring for oneself and others.

Good communication skills are the only way your messages are heard and received.

With tools such as listening with empathy and letting go of your reactivity, you can end the frustration of poor communication. You break old patterns that used to get you caught up in the same conversations.

I help my clients learn new ways to:

• be a more active listener
• express themselves without the fear of creating more conflict
• be heard

We do it by exploring:

• how the way they treat themselves impacts their relationships
• how to create and enforce good boundaries/respect
• new ways of building intimacy and trust

How’s communication in your relationships? Maybe it’s great with your partner but not so great with a sibling. You are not alone. Family relationships are complicated! Learn what you can do to feel better, find peace and get unstuck.

Have you ever had to deal with a control freak? They need to be right all the time. That means you can’t be—right?

I had a cousin whose husband told her what she could and couldn’t wear. He wouldn’t let her shop without him. He had to be there to choose what he liked. After all, it was his money. She was a stay-at-home mom. She looked after him, their kids and a huge house. “It’s his way of showing his love,” she said. “I’m so lucky to have all this.”

Funny how easily we can explain things away.

He chose where they would vacation and what car she would drive. He constantly interrupted to correct her, and even called her ‘stupid.’ Imagine—a highly educated and capable woman stuck in a toxic situation, using all her brain power to convince herself things were fine when they weren’t.

One day in frustration he put his hands on her. For a split second she was afraid—then angry. Finally, something cracked in her. The anger completely took over her fear. She saw red flags everywhere. How could she have missed them? Her teenage son spoke to his girlfriend in the same condescending tone as his father. It wasn’t the first time, but she hadn’t registered it before. She thought she’d raised him to respect women. What about her little daughter? Would she allow herself to be treated like this one day?

Horrified, she realized things had to change. Her children were going to learn the value of respect—starting with self- respect! But there was no point in just telling them. That didn’t work, obviously. She had to show them. She would be a better role model now.

She changed the way she responded to her husband. Instead of explaining away his behavior she quietly spoke up. The intimidating tricks and manipulations he’d relied on for so long lost their power. She began to trust herself. Her confidence grew.

When the kids finally noticed and started to ask questions, she knew she’d reached them. They began talking about their father’s actions and her responses. Their tensions began to ease. None of them had realized just how much anxiety they were hanging onto until they started sharing their feelings, feeling heard.

At first he was as disrespectful as ever—but no longer scared her. She spoke up more and more. Sometimes she exploded—she couldn’t help it—but mostly she was polite and unwavering. She even made an effort to understand where he was coming from. What was he afraid of? Could she help? This confused him at first and he got angry, but in time he couldn’t deny the value of what she was doing.

The atmosphere in the house changed. He was touched by her. She’d cracked his wall! If there was ever going to be a turning point, this was it.

The more she took responsibility for herself, the less afraid she was. She realized the price she’d paid for her compliance. She also realized that he wasn’t her responsibility. His behavior was his choice—not hers. He could either continue on his destructive path and she’d act accordingly, or he could appreciate the growth and newfound strength his wife was bringing into their marriage—and ask for help.

Most Friday evenings while preparing for supper Stephen pours our wine and we reflect on our long busy week.

I always ask him about his Friday mindfulness group at the Cancer Wellness Center. You’d think it would be a depressing and sad conversation. Not at all!

He relaxes and reflects on his time there just hours ago. Then with a smile and sometimes a tear he describes the love and warmth among these courageous inspiring warriors.

‘There’s no bullshit’ he says. ‘These people truly live in the moment. They have the choice to be pulled down by their cancer, or to accept it and push forward. They have no time or energy for pretense.’

Sometimes the group loses a friend. Other times a newcomer joins the group and is awed by the warmth and kindness of the other members as they make them feel comfortable and safe.

Life is fragile and precious —a gift. No one in that room takes it for granted. He always says that he gets much more than he gives.

People often ask me how I deal with the stress of carrying other people’s pain.

I don’t see it as stressful. I get to witness people as they gain insight into their own minds. They come ready to create their own happiness, to understand what makes them tick and to overcome the obstacles holding them back. The change begins at our very first meeting. It’s awesome!

Stephen and I are not surrounded by stress and sadness, we are surrounded by love.

We see the power of the human will every day, building confidence, self love, respect and trust. We watch them learn to grow from every experience with equanimity and love. We don’t just believe in mindfulness, we see its key role in this process.

I am so grateful to have the best mindfulness mentor in the business. Thank you Stephen!

This last weekend I visited my neurologist for the first time in seven years. He’s a nice guy—gentle, top in his field—but I stopped seeing him because he had nothing encouraging for me. After my last visit in 2012, I left his office drained and terrified.

At that time it was obvious my MS body was deteriorating. He told me my disease had shifted from the relapsing- remitting stage to secondary progressive, in which there are no more remissions. He performed all the standard neurological tests, proving only the worst. He also mentioned available drug treatments, which did nothing for my spirits. They may slow down progression of the disease, but they also come with side-effects.

“That’s life,” was all he said. On the ride home I cried while Stephen held my hand. The future looked bleak. He may be a doctor but to me he is no healer.

This time however, things were different. I’ve changed my lifestyle, including my diet, and work out regularly. I thought he’d be pleased. There I was smiling ear to ear, twenty pounds lighter, hypertension gone, not bent over a stick but upright and fearless. I explained all the things I was doing that have reversed some of the most disturbing symptoms of MS, like extreme fatigue, dizziness and weakness.

He was genuinely pleased and surprised at what how well I looked but seemed to think it had nothing to do with what I was telling him. He literally scoffed at me saying that the approach is only worth consideration if it’s substantiated by a double-blind, placebo-controlled trial with a large population, and then published in the New England Journal of Medicine.

Ouch!

We never questioned his authority before, but we did discover how much I could do for my health. That was in 2014 when we found reputable health professionals— MD’s, medical fitness practitioners and others—who all suggest a proactive approach to living with MS. What stands out most is that they educate and motivate.

So for the last five years we’ve been soaking up information about nutrition, exercise and stress-management that made sense. I still see my GP and share with her everything I’m doing. If I’m taking any unhealthy risks, she’ll tell me.

I went from being an MS sufferer to MS warrior. It’s a hard battle but it pays off. I’m still working on my ability to walk better, and I’m encouraged to be stronger and healthier in every other way. I feel more energy, joy, purpose…’

And HOPE.

MS is not the mysterious monster I once thought it was. I follow news about the drugs, immunosuppressants, stem cell transplants and devices that science is working on, and I look forward to having safe, reliable, affordable options— but I’m not going to just sit back and wait. These potential cures are just that—potential. I always remember the knee- jerk promise of my very first neurologist: “Don’t worry, there’ll be a cure in ten years. “For sure.”

That was twenty-seven years ago.

One thing I’ve learned as a coach is that change starts with a desire for change. Then, on top of that, you need to commit to a process and get whatever support you need. I have my coach, the online communities of my fellow MS- Warriors and my husband Stephen, who keeps me grounded every day.

I understand the value of science and also the dangers of wishful thinking.

But I also understand the debilitating effects of fear and the absolutely essential ingredient of hope.

For some reason doctors and scientists squirm rather than provide hope or even optimism, let alone prescribe a proactive approach to living with MS. That’s not just a mistake, it’s a betrayal. Science should treat fear the way it treats other symptoms, and address it in every way conceivable. This would make patients less dependent on the health care system and enlist them as part of the strategy to find a cure for MS, and live with it hopefully in the meantime.