As I sit here in my yard, under the shade of tall trees and a sky so vast, I am reminded of the gentle teachings of impermanence. The pratyayas, those rising and falling sensations, memories, and thoughts, have once again surfaced, but they do not hold the weight they once did. Instead, there is a soft awareness that everything is already changing, and that in the grand scheme of time, everything is already gone.
I look over at my RV, which has been a sanctuary for me for so many years. Soon, this land will become something else, transformed into a clubhouse. And yet, in this moment, I am filled with deep appreciation for what has been, for the unconscious and conscious years spent on this blessed earth. The impermanence of it all doesn’t bring sadness, but rather a profound gratitude for having lived through it, both mindfully and unmindfully.
Namkhai Norbu’s sky-gazing practice teaches us to rest in the awareness of what is, without grasping or rejecting. In these moments of contemplation, I’m reminded that sky-gazing isn’t about observing the physical sky but allowing the mind to open into its own natural spaciousness. The practice reflects what is already within—clear, vast, and untouched by the clouds of thought.
As pratyayas of impermanence arise, they are met not with resistance but with curiosity. Curiosity has become my companion on this contemplative path, gently guiding me to rest in awareness without the need for answers or conclusions. There is no longer a push for meaning, only the quiet observation of the present moment unfolding, just as it is.
In this state of being, I can feel both the impermanence of the physical world and the abiding stillness of awareness. It is a paradox, and yet it is also the simplest truth: everything changes, and yet awareness remains the same.
The teachings of St. John of the Cross, Ramana Maharshi, and Namkhai Norbu all point to this truth in their own ways. We move through life, through our spiritual practices, sometimes seeking, sometimes grasping for deeper experiences. But there comes a moment when we simply stop, when we rest in the spaciousness that has always been there. It is not a state we attain; it is a state we remember.
As I continue this practice, I feel a deep gratitude, not just for the present moment, but for all that has been and all that will come. And in this gratitude, the pratyayas seem to soften, leaving behind the quiet awareness that is always there, patiently waiting for us to return.
When post-viral ME/CFS first appeared in my life over 30 years ago, it was like a sudden, uninvited guest that turned everything upside down. The plans I had carefully laid out—the career, the teaching, the travel—came to a screeching halt. My body, which once felt like a reliable vehicle for my ambitions, became a source of constant limitation.
For many people today, especially in the aftermath of COVID, the experience of long COVID or post-viral ME/CFS can feel like a similar trainwreck. The life you knew, the expectations you had, are suddenly out of reach, and you’re left grappling with a new reality—one that modern medicine often struggles to explain, let alone resolve.
I remember the early days well. The confusion, the depression, the overwhelming frustration that came with the unrelenting fatigue. In the beginning, it was hard to see any way forward. It felt like I was being asked to surrender everything I had worked for, again and again. Every time I hit a new limit, I had to lower the bar, lower it again, and lower it even further. It was a painful process of letting go, not just of my physical abilities, but of my identity and the future I had imagined for myself.
But over time, and through countless moments of surrender, I began to see that while the path I had planned was no longer possible, there was another way forward. It was a quieter path, more inward, but it was no less valuable. Writing became my outlet, my way of contributing to the world, even while living in solitude and spending much of my time in bed.
For those of you reading this who are newly facing the reality of post-viral ME/CFS, I want to acknowledge that this is not an easy journey. It’s okay if you need to take breaks, both from reading and from the mental and emotional load of processing what this diagnosis means. Be gentle with yourself, and if you find the post too long, take it in pieces, come back when you’re ready. The key is to pace yourself, in life and in reading.
Surrendering to a New Reality
One of the hardest lessons I had to learn was surrender—over and over again. Post-viral ME/CFS teaches you that you can’t control everything, no matter how hard you try. Every time I felt like I was getting close to managing the illness, there would be a setback. My energy would crash, and I’d find myself in bed for days or weeks at a time. At first, it felt like defeat. I had to give up so many aspects of life I’d taken for granted.
But over time, I realized that surrendering wasn’t about giving up. It was about accepting what is, rather than constantly struggling against it. The more I fought the reality of my illness, the more frustration I experienced. Letting go didn’t mean that I had to stop hoping or working toward better health, but it did mean that I had to stop resisting what I couldn’t change in that moment.
Surrendering, in this sense, became a way to make peace with the limits of my body, to find moments of ease even when everything else felt out of control. It was an ongoing practice, one that I still revisit, especially on difficult days.
Navigating Others’ Reactions
In addition to learning how to surrender, one of the most difficult challenges I faced early on was dealing with other people’s reactions. In those early days, many people didn’t even believe post-viral ME/CFS existed. I heard things like, “You just need to drink more coffee,” or, “Have you thought about taking naps?” Even when I was officially diagnosed as disabled by the government, my own mother thought I was just lazy and needed to be more active.
This kind of misunderstanding, disrespect, and dismissal is, unfortunately, a common experience for many who suffer from post-viral ME/CFS. Family, friends, and even doctors would question or deny my experience. I’ve heard stories of doctors telling their patients not to even talk about ME/CFS because it “doesn’t exist.” It was often treated as a garbage-pail diagnosis, or dismissed entirely.
While there is more understanding of post-viral ME/CFS today, the stigma still remains. Making peace with this aspect of the illness has been a long journey. What helped me most was cultivating compassion, not just for myself but for others. As Jesus said, “Forgive them, for they know not what they do.” Having compassion for the people in your life who may deny or diminish your experience is a key part of finding peace.
An Evolving Perspective on Post-Viral ME/CFS
In the early days of my journey with post-viral ME/CFS, I found myself going through what felt like the stages of grief as described by Elizabeth Kubler-Ross. At times, I thought I might be dying, and I cycled through stages of anger, grief, depression, and confusion. Acceptance didn’t come quickly, and it took years of processing and reflection before I could reach that place.
One of the major steps toward acceptance came when I read How to Be Sick by Toni Bernhard. This book resonated deeply with me, and for the first time, I felt like someone truly understood what I was going through. Toni’s reflections on illness gave me a new sense of validation and self-respect, and her practical tips helped me develop a healthier way of relating to my experience. I highly recommend this book to anyone struggling with post-viral ME/CFS.
Then, during a meditation class organized by students of Sogyal Rinpoche, based on The Tibetan Book of Living and Dying, I began to find deeper peace. It was around this time that I discovered a Tibetan sutra titled Transforming Suffering and Happiness onto the Path of Enlightenment. This teaching profoundly shifted my perspective once again.
As I read the sutra, I realized that my anger, frustration, and negative emotions were not only draining my energy but also exacerbating my symptoms. It became clear to me that these stressful emotions were making my condition worse, and that when I was able to relax, let go, and find inner peace, I had greater capacity and longer periods of activity without crashing—or without crashing as severely. This was an important revelation: cultivating acceptance, forgiveness, and inner peace didn’t just feel better, it actually minimized my symptoms.
Shifting Perspective: The Sutra That Changed Everything
One passage from the Tibetan sutra resonated deeply with my experience of post-viral ME/CFS:
“Whenever we are harmed by sentient beings or anything else, if we make a habit out of perceiving only the suffering, then when even the smallest problem comes up, it will cause enormous anguish in our mind.”
This teaching hit home because, for a long time, I had been focusing only on the suffering. Everything in my life had become an enemy—my body, my circumstances, even the people around me. The more I centered my awareness on the pain and limitations, the heavier everything felt. Even the smallest setback would feel unbearable.
The sutra showed me that the more we focus on suffering, the more it grows and colors everything we experience. By recognizing this, I began to understand that shifting my focus away from the suffering and toward acceptance could help me find peace. It wasn’t about denying the reality of the illness, but about no longer letting it dominate my entire perspective.
The true transformation came not only by making peace with suffering but by learning to approach both suffering and happiness with the same equanimity. I had to remind myself that when I’m unhappy, this too shall pass, and when I’m happy, this too shall pass. This reminder became a useful way to stay balanced through the ebb and flow of life—the good days and the bad days, the good months and the bad months.
Additionally, I found comfort in William Blake’s words: “He who kisses the joy as it flies lives in eternity’s sunrise.” It reminded me to appreciate the little moments of happiness, to savor them without attachment, knowing that they, too, are fleeting. This perspective helped me not to be disturbed by the constant changes and to find a sense of peace amidst it all.
Discovering a New Path: Writing as Healing
As I continued to navigate the ups and downs of post-viral ME/CFS, I eventually found a new passion that helped me stay connected to the world and give expression to my inner journey: writing. Although much of my life is spent in solitude, and my physical abilities are limited, writing has become my outlet, a way to contribute and share what I’ve learned.
Through writing, I’ve been able to explore the lessons of impermanence, forgiveness, and acceptance, not just for my own growth but as a way to offer encouragement to others walking a similar path. Chronic fatigue may limit what I can do in the physical world, but it has opened up this creative space where I can still connect, reflect, and contribute.
In this way, writing became not just a coping mechanism but a practice of karma yoga, an offering. It’s a way to kiss the joy as it flies, even amidst the challenges of chronic illness, and to embrace each moment—whether in suffering or happiness—as an opportunity for growth.
🙏🕊️🙏
“He who binds to himself a joy Does the winged life destroy; But he who kisses the joy as it flies Lives in eternity’s sunrise.”
There’s a moment in the Ramayana that really strikes a chord, especially when you think about how we handle the unexpected twists and turns in our own lives. Rama, who’s about to be crowned king, gets hit with the news that he’s being sent into exile for fourteen years instead. Imagine that—a complete 180 from everything he’s been preparing for. And yet, what does Rama do? He smiles and accepts his fate without a hint of resistance.
This isn’t just some heroic act from an epic tale; it’s a powerful reminder of how we can find peace in letting go.
Rama’s reaction is a beautiful example of non-attachment. He doesn’t cling to the throne, the power, or the comforts of palace life. Instead, he just lets it all go. It’s like he’s saying, “Okay, this is what life has handed me, and I’m going to embrace it.” There’s something incredibly liberating about that kind of mindset. When we’re not attached to a specific outcome, we open ourselves up to whatever life brings, with a lot less stress and anxiety.
This kind of non-attachment is at the heart of equanimity—a calm and balanced mind that stays steady no matter what happens. And let’s be honest, who wouldn’t want more of that in their life?
What really stands out in this scene is Rama’s mindfulness. He’s fully present, fully aware of what’s happening, and yet he doesn’t get lost in it. He’s not caught up in the drama or the unfairness of it all. Instead, he meets the moment with a clear mind and an open heart. This is mindfulness in action—not just being aware, but being aware with a sense of peace and acceptance.
Think about how we usually react when life throws us a curveball. We resist, we fight, we stress out. But what if, like Rama, we could meet these moments with mindfulness and a sense of calm? How much easier would life be?
Rama’s response isn’t just about keeping cool under pressure—it’s about living in alignment with what’s right, with Dharma. By accepting his exile, Rama is doing more than just obeying his father’s wishes; he’s showing us what it means to live a life rooted in principles. It’s a reminder that sometimes, doing the right thing means letting go of what we want and embracing what’s being asked of us, even if it’s difficult.
This is a lesson we can all take to heart. In our own lives, we’re constantly faced with choices—do we hold on tightly to what we think we want, or do we let go and trust that things will unfold as they should?
Rama’s story might be thousands of years old, but the lesson is timeless. When we cultivate non-attachment, mindfulness, and a commitment to doing what’s right, we can face life’s challenges with a lot more grace. We can let go of the need to control everything and find peace in the flow of life.
So next time life doesn’t go according to plan, think of Rama. Smile, take a deep breath, and let go. You might just find that the peace you’re looking for was there all along, waiting for you to embrace it.
It’s common to wrestle with feelings of inadequacy, especially in the face of challenges like chronic illness. Remember, your worth isn’t defined by productivity or meeting expectations. Embrace self-compassion and acknowledge your resilience in navigating life’s difficulties.
Living with chronic fatigue syndrome (CFS) and chronic pain for over 30 years has been an immense challenge. There were times when the physical suffering seemed so overwhelming that it consumed my every thought. But as I journeyed deeper into spiritual practices and reflected on the nature of suffering itself, I came to a life-changing realization: much of my suffering wasn’t from the actual pain, but from my mind’s reaction to it. This distinction has become a cornerstone of my approach to living with chronic illness, and I’d like to share it with you, in hopes it may offer some clarity and comfort on your own journey.
Understanding Suffering:
Suffering is a universal part of the human experience, but what I’ve learned over time is that suffering doesn’t always arise directly from the pain itself. More often, it arises from the mind’s interpretation of the pain—the stories, fears, and resistance we build around it. This insight is well illustrated in the Buddhist teaching of The Second Arrow. The story goes that while we may be struck by the first arrow—representing the unavoidable pain that comes with being human—it is the second arrow, our mental and emotional response to that pain, that causes much of our suffering. We have no control over the first arrow, but we do have some control over the second one. When I began to understand this, I could see how my mind was amplifying my suffering by dwelling on it, resisting it, or fearing its persistence.
Recognizing this dynamic has helped me approach pain not as an enemy to be fought, but as an experience to be acknowledged without judgment. This doesn’t mean the pain vanishes, but it transforms how I relate to it, making room for moments of peace amidst the discomfort.
Finding Realization:
A deep shift in my experience of suffering came when I began exploring spiritual teachings that pointed to the true nature of the self. Teachers like Papaji and Mooji guided me toward moments of realization where I glimpsed the unchanging awareness that lies beneath all mental and physical experiences. In those moments, I recognized that the pain in my body and the thoughts in my mind were passing phenomena, while something vast and peaceful within me remained untouched. This was the beginning of a profound realization: I am not the pain, I am the awareness in which the pain arises.
However, sustaining this realization in daily life requires practice. It’s not about escaping pain or denying its presence, but about recognizing the part of us that remains constant and unscathed by the fluctuations of the mind and body. In this way, realization becomes a refuge, a space of stillness even as the storms of physical suffering continue.
A New Relationship with Pain:
Through mindfulness and meditation, I’ve learned to sit with the physical sensations in my body without immediately labeling them as good or bad. When I practice mindfulness, I bring a compassionate awareness to whatever arises, whether it’s pain, frustration, or fear. Instead of trying to push these feelings away, I let them be. This simple act of allowing has been one of the most powerful tools in transforming my relationship with suffering. By observing the sensations without judgment, I create space between myself and the pain, a space where peace can emerge.
Meditation has also been a sanctuary for me. By focusing on the breath or repeating a mantra, like the Medicine Buddha mantra, I find that I can calm the turbulent waves of the mind, even if the body is still in pain. This doesn’t take the pain away, but it brings a sense of inner calm that helps me cope more gracefully.
Another practice that has been transformative is self-inquiry, specifically investigating the “I” that claims ownership of the suffering. When I look closely at thoughts like “I am in pain,” I ask myself, “Who is this ‘I’ that is experiencing this?” This simple question often reveals that the sense of “I” is just another thought, another mental event.
I realize that I am not the thought or the pain. I am the awareness observing it all. This recognition doesn’t remove the physical sensations, but it softens their hold on me. It’s like taking a step back from the drama unfolding in the mind and body, and instead of being caught up in it, I become the quiet witness of it all. This shift in perspective helps dissolve the perceived separation between the observer and the observed, and in that union, peace is found.
Living with Compassion and Reflection:
As I continue to navigate life with chronic illness, I’ve come to see suffering as both a challenge and a teacher. Each moment of pain has the potential to teach us about resilience, about compassion, and about the nature of existence itself. Reflecting on my own journey, I often ask myself: what is this pain trying to show me? How can I meet it with acceptance instead of resistance? How can I extend the compassion I so often offer others to myself?
One of the most important lessons I’ve learned is the value of self-compassion. Chronic suffering can easily lead to frustration, self-criticism, or even feelings of failure. But I’ve come to realize that the first step toward healing is always kindness—to acknowledge my struggles without judgment and to treat myself with the same care and compassion I would offer to a loved one in pain. This practice of self-compassion doesn’t just ease the burden of suffering; it opens the heart to a deeper understanding of the shared nature of human experience.
Conclusion:
Living with chronic fatigue syndrome and chronic pain is undeniably difficult, but by transforming the way we relate to suffering, we can find moments of peace even in the midst of it. It’s not about eradicating pain or escaping it, but about changing the lens through which we view it. When we understand that much of our suffering is created in the mind—the second arrow—we can begin to soften our response to it. Through consistent mindfulness, meditation, self-inquiry, and self-compassion, it is possible to cultivate a deeper sense of peace and acceptance.
This journey is ongoing, and there is no finish line. But each moment of awareness, each breath of compassion, brings us closer to a more peaceful relationship with our pain. I invite you to reflect on your own experiences of suffering and how these practices might support you. Please feel free to share your thoughts and reflections in the comments below. Together, we can create a community of support, compassion, and healing.
Review of Chapters 1-6 with Personal Reflections and Contemplative Insights
In St. John of the Cross’s timeless masterpiece, “The Dark Night of the Soul,” he intricately details the soul’s profound journey towards spiritual union with the divine. Each chapter unveils layers of purification and surrender, guiding us through the depths of spiritual transformation.
Chapter 1: The Soul’s Longing
Chapter 1 begins with a poignant exploration of the soul’s yearning for divine connection. St. John describes how this longing initiates the soul’s journey through darkness and detachment from earthly desires. Personally, I resonate deeply with this chapter as it mirrors my own quest for deeper spiritual fulfillment amidst life’s challenges.
Chapter 2: Detachment from Earthly Desires
In Chapter 2, St. John delves into the dark night of the senses, where the soul undergoes purification from sensory attachments. This resonates with my journey of letting go of material expectations due to chronic fatigue syndrome, guiding me to embrace spiritual detachment as a path to inner peace.
Chapter 3: Purification of the Spirit
The dark night of the spirit unfolds in Chapter 3, where St. John explores the soul’s purification at its deepest level. This chapter teaches me the profound art of surrender, where I’m learning to release attachments and find solace in divine presence amidst life’s uncertainties.
Chapter 4: Surrendering to Divine Transformation
Chapter 4 amplifies the soul’s journey through surrender, where St. John emphasizes letting go of spiritual consolations for a deeper union with God. This chapter inspires me to embrace a profound level of surrender, trusting in divine guidance as I navigate life’s challenges and joys.
Chapter 5: Awakening to Divine Love
In Chapter 5, St. John illuminates the soul’s awakening to divine love through complete purification and detachment. This chapter encourages me to deepen my awareness of the divine presence in every moment, cultivating a profound sense of inner peace and spiritual fulfillment.
Chapter 6: Recognizing the Divine in All
Finally, Chapter 6 culminates in the soul’s recognition of the divine presence in all aspects of existence. Inspired by Jesus’ teachings on spiritual perception, this chapter guides me towards seeing God in everyone and everything, fostering a transformative journey of spiritual growth and awakening.
Reflective Questions for Contemplation:
1. How does the concept of surrender resonate with your own spiritual journey?
2. In what ways can detachment from earthly desires deepen your sense of inner peace?
3. How do you currently perceive the divine presence in your daily life and interactions?
4. What practices or teachings inspire you to embrace spiritual growth and union with the divine?
Feel free to share your reflections, insights, or experiences in the comments below. Let’s embark on this journey of spiritual exploration together!
If you’re interested in learning more about this book, follow this link below to the Amazon website.
This blog post integrates St. John of the Cross’s teachings with personal reflections and invites readers to engage in contemplation and discussion. As we navigate our spiritual paths, may we find inspiration and guidance in embracing deeper levels of surrender, purification, and divine union.
In the tapestry of time, woven with threads of understanding, empathy, and love, I extend my hand to you, a fellow traveler in the realm of chronic fatigue syndrome. It’s not just a condition; it’s a journey, a complex dance with our bodies and minds. You are not a hypochondriac; you are a warrior navigating the intricate landscape of your own existence.
Having walked the same path, I resonate with the words, “After a lifetime of living with chronic fatigue syndrome, you’d think I’d be better at it now.” Each day, a new chapter unfolds, revealing the resilience within us. It’s not about perfection or mastery; it’s about learning, adapting, and discovering the strength that resides within, often unnoticed.
Embrace the wisdom your journey has bestowed upon you. You’ve acquired an intimate knowledge of your body and mind, a profound understanding that defies the misconceptions others may hold. You are not defined by the fatigue that courses through your veins; you are defined by the courage with which you face each day.
In this shared experience, let love be the balm that soothes the weariness, understanding the salve that heals the wounds unseen. As you unravel the layers of your existence, remember that every nuance of your journey contributes to the masterpiece of who you are.
Encourage yourself to practice self-compassion daily. Recognize the victories, no matter how small, and celebrate the resilience that continues to blossom within. You are not alone in this intricate dance; we move together, step by step, navigating the ebb and flow of chronic fatigue syndrome.
May your days be adorned with moments of understanding, empathy, and love – the pillars that support you on this remarkable journey.
May your journey continue to be filled with peace, wisdom, and compassion. 🙏
May we all embrace our journey with a compassionate and open heart, finding solace in the present moment on our path with ME/CFS.
Greetings Everyone…. This is about one of the absolutely best, most helpful books, I have ever found, about living with ME/CFS.
Toni Bernhard’s “How to Be Sick” is a powerful and insightful book that offers a unique perspective on the challenges faced by those suffering from chronic illnesses such as ME/CFS, Long Covid, and other similar conditions.
The book is written with great empathy, warmth, and practicality, providing readers with a wealth of information, insights, and practical tools to help them manage their condition and live a more fulfilling life.
One of the most compelling aspects of this book is the author’s own experience of living with chronic illness. Toni Bernhard was a law professor when she became ill with a viral infection that left her bedridden and in constant pain. This experience gave her a unique perspective on what it’s like to live with a chronic illness, and she shares her insights and wisdom in a way that is both accessible and highly relatable.
The book is divided into three parts, each addressing a different aspect of living with chronic illness. The first part focuses on the emotional and psychological challenges of coping with chronic illness, including the grief, loss, and isolation that can accompany such conditions. The second part offers practical advice on managing symptoms, including pain, fatigue, and brain fog, while the third part offers guidance on how to cultivate a sense of meaning and purpose in life despite illness.
What sets this book apart from other self-help books for chronic illness is the author’s emphasis on mindfulness and compassion. Throughout the book, Toni Bernhard stresses the importance of being present in the moment, accepting one’s condition with kindness and compassion, and cultivating a sense of gratitude for the small joys in life.
She also offers a range of practical mindfulness exercises and meditations that can help readers to cultivate these qualities in themselves.
Overall, “How to Be Sick” is an essential read for anyone living with chronic illness, especially those suffering from ME/CFS, Long Covid, and other similar conditions. The book is not only packed with practical advice and insights, but it also offers a powerful message of hope and resilience that can help readers to find meaning and purpose in their lives despite illness.
I highly recommend this book to anyone looking to live a more fulfilling life with chronic illness.
Essentially… “How to Be Sick” by Toni Bernhard is a guidebook for people living with chronic illness or chronic pain. Toni, who was diagnosed with the sudden onset of chronic fatigue, shares her personal experiences and provides practical advice for managing physical and emotional challenges associated with chronic illness.
Toni encourages us to accept our condition, practice mindfulness, and cultivate gratitude to improve our quality of life. The book also offers insights into navigating relationships, communicating with healthcare providers, and adapting to a new way of life.
Without a doubt, “How to Be Sick” provides a compassionate and empowering approach to living with chronic illness. It is one of the most helpful and useful books I have ever read on the subject of living with chronic fatigue.
Dear friends, If you have found any other books, that you would highly recommend, please share them in the comments section below – it is very possible that others can benefit from your suggestions as well.
I personally, highly recommend this book to anyone experiencing ME/CFS, Long Covid or chronic illness of any kind. You can usually find a used copy on Amazon.
May we all find peace, joy and wellbeing on our journey through life.
“Navigating life with ME/CFS requires a careful balance of activity and rest.”
Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been an ongoing challenge for me, marked by profound fatigue that doesn’t improve with rest and often worsens with activity. I also endure sleep disturbances, muscle and joint pain, headaches, and cognitive difficulties.
Navigating life with ME/CFS requires a careful balance of activity and rest. Embracing compassion for myself is essential. Spiritual teachings offer me inner strength and resilience. Mindfulness practices help me manage stress and cultivate acceptance of the present moment, while love and forgiveness foster a supportive inner dialogue. Emphasizing inner peace helps me find tranquility amidst the challenges.
My heartfelt wish is for all of us living with ME/CFS to nurture a deep sense of compassion for our journeys and to trust that each step, however small, contributes to our overall wellbeing.
Together, may we find our way towards greater peace and resilience.
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