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No one wants to be sick or to suffer but when we know how to work skilfully with our experiences they can be a source of deepened compassion, inspiration, and appreciation for the life we have. Here you'll find information about biotoxin illness caused by exposure to mold, an illness sometimes misdiagnosed as chronic fatigue. I am a patient doing patient education. The information offered here is not medical advice. May this be of benefit.

Wednesday, July 13, 2011

Ordinary Beauty

The view outside my window looks onto a small pond in which several large brightly colored Koi swim lazy circles. An artificial stream and waterfall provide background accompaniment to the cheerful melody of songbirds. The home I live in is not my own – I live with my parents who help care for me – and the pond belongs to the neighbors. Suburban beauty.

wild daisies along the backyard fence
Previously I lived in an apartment in Seattle where my views were largely dominated by asphalt and concrete with one lovely slice of sky just above the three story townhouses across the street. To the constant background roar of traffic was added the more human sounds of conversation and music that wafted through the thin walls of the building. Filling every patch of dirt along the sidewalks lining that particular block of 22nd Ave NE were flowers, shrubs and trees creating tiny magical islands of lush greens and vibrant colors.

The yearly show in my Seattle neighborhood began with crocuses in the late winter, followed by daffodils and narcissus of every sort, then tulips, irises, rhododendrons, azaleas, lilacs, roses, hollyhocks, magnolias, dogwoods and yet more flowers and flowering trees than I can recall or name. In the spring and summer pots overflowing with kitchen herbs, geraniums, nasturtiums, lobelia, African daisies, pansies, petunias, and again more flowers than I know by name, lined decks and patios. Birds built nests, drank foul water in the cracks of the road, and called out their merry songs. At night one could see the occasional raccoon or possum and people filled the streets by day and night. Beauty was everywhere in sights, sounds, and even fragrance – of spring lilacs and summer roses, cooking dinners, scents from the local bakery and coffee houses, grilling meat form the neighborhood burger joint – free for all to enjoy. Beauty and life in the urban wilds rivals anything in the country or suburbs. And I know – I grew up on over 200 acres of fields and old forests where an encounter with deer or a bear was nearly as likely as meeting a neighbor on the road.

early spring weeds in the sidewalk 
Chronic illness seems to have shrunk my world but beauty is always there. I see it now in the tiny ecosystem of “weeds” growing in the cracks of a sidewalk. I see it in the cover-plate of the local sewer access. My beautiful world is one block long – the length that I can walk. Much of the block has a rugged stone retaining wall at the perfect height for sitting and the sun-warmed stones sooth the pain in my legs. As an exercise in seeing the diversity of beauty in my world, I started photographing ordinary details within the single block that is now my short tether. Every feature and aspect of the interwoven tapestry of life that connects us all one to the other is beautiful just as it is. 

detail of stone retaining wall
Beauty is a state of mind, a quality of our attention and intention, and can be cultivated and nurtured as a habit of mind. In the midst of suffering and despair beauty calls to us, pulls us from the claustrophobic confines of our private agonies and deepest fears. Despite the ubiquitous herbicide that one of our neighbors annually sprays in the cracks of the sidewalk, the lovely weeds and wild growing things will again be back next year. Beauty is impermanent, changing, fleeting and unceasing. It is beyond our control, akin to kindness and compassion, to know beauty in its variety is certainly to be touched by grace.

Sunday, June 12, 2011

WWBD

May 17 according to the Tsurluk Tibetan calendar was Saga Dawa Duchen, the day on which the birth, enlightenment and death of the Buddha is celebrated. For that reason it’s believed to be a day on which karma, or the consequences of our actions, is greatly magnified. The day started for me as most do with breakfast followed by meditation practice with special prayers to celebrate the occasion. Well before noon, however, things took a nosedive. Ten years of practice seemed to evaporate as I was engulfed by an overwhelming wave of anger.

For several hours I carried the anger, painfully aware that it was Saga Dawa, painfully aware of my previous post, “Let It Go,” but still unable to do so. It was with me as I went about the grueling business of going to a medical appointment, two pharmacies and the grocery story. The unexpected need to do so many chores was the spark that ignited my angry state of mind. It flared upon discovery that I was out of vegetables. It sounds silly. But for those of us with chronic illness there’s no such thing as a quick trip to the market. Every outing is planned to account for my energy level and an extra stop was more than I could manage. 

This past year I’ve relied upon my mother to do most of my shopping and, uncharacteristically, she’d forgotten some things. Mom offered to go for me but by then I was beyond reason and stubbornly insisted on going myself. Anger is a common response to the many losses and dependencies of chronic illness. It’s a challenge to maintain patience when one is exhausted, in pain, and dependent upon others. I know better than to let anger take control but on this day it got the better of me. It’s an emotion even healthy people can’t afford. Anger depletes energy, undermines the immune system and leaves a buildup of toxic chemicals in the body.

Driving to the grocery store I was mindful of traffic knowing how dangerously distracted I was. Ahead of me written in large letters on a bumper sticker was the acronym WWBD. At a stoplight I was able to read the small print: “what would Buddha do?” My mind froze as a wave of shame washed over me. It’s not pleasant to look at our shortcomings under the microscope of comparison to historical and contemporary figures that embody loving kindness, compassion, patience, and a host of other virtues. But when we falter it’s a chance to assess our behavior, renew our commitment to doing the best we can, then forgive ourselves and move on. Years ago a Christian friend sang me these lines from a song:
We fall down and we get up,
We fall down and we get up,
For a saint is just a sinner
Who fell down and then got up.
In a recent conversation the same friend, Joe Greer, observed, “It’s in our own failures that we have the compassion to see that other people’s failures are the same [as our own].” It’s encouraging to know that our shortcomings, failures, and mistakes can be a cause of compassion for others and ourselves. Even an emotion as volatile as anger can be used to inspire kindness.

According to the Buddhist view anger is the most destructive of our emotions. It can destroy in an instant all of our previous positive deeds like a blazing fire can destroy an entire forest. It’s an emotional state of mind that we have to work skillfully with. Fortunately I’d not said anything pointedly unkind to my mother although I had been noticeably surly. Of course the anger had taken a physical toll, worse yet it had undermined my confidence – the confidence that I can walk my chosen spiritual path. What would Buddha do? The Buddha failed many times on his path towards enlightenment but kept on going. This Saga Dawa I tripped and fell and then got up. The next morning I mediated again and with renewed confidence vowed to do better at mastering my mind.

And before the day was finished I apologized to my mother – who gently reminded me to let it go.


For further contemplation, two wisdom quotes posted on Twitter by Dzogchen Ponlop Rinpoche, http://twitter.com/#!/ponlop:

“Erring and erring we walk down the unerring path.” - the contemporary Buddhist master Khenpo Tsultrim Gyamtso Rinpoche

“So, I learn from my mistakes.” – Johnny Cash

Monday, April 18, 2011

Let it Go

Years ago I worked with a woman who used acronyms when speaking as a way to code conversation that our supervisor might overhear. One of her favorites was LIG – let it go. I learned many things in that job, among them that the only and best response in a situation is often none at all. Rather than react or respond – especially when under the influence of a powerful emotion – it’s more useful to look directly inward at our own mind, watch carefully and cautiously, and then as the energy begins to dissipate let it go. Whatever emotion or negative thought that manifests don’t grab onto it or use it to build resentments, feel self-righteous or victimized (two of my old favorites), or manufacture stories and additional painful emotions. Just LIG!

As a child my family went to church every Sunday morning where we sat in an austere Lutheran chapel and listened to a minister who – aware that adults tend to make things more complicated than necessary – wisely geared his sermons to the children among his parishioners. One Sunday, as we waited sitting on the hard wooden pews, it seemed that our pastor had gone missing when the doors suddenly flew opened and he came stomping up the aisle wearing hiking boots and a heavy backpack. The lesson that morning: leave your burdens with the Lord. In other words, LIG!

We all carry burdens. If we take an honest inventory we might discover most of them are unnecessary. We can lighten our load and the earth won’t tilt off axis, which is good news. It means we can take our problems and ourselves less seriously and give ourselves a break. When we genuinely let go of something we’ve been holding onto (sometimes for years) there’s a great sense of relief, we can breath easier and our hearts feel lighter. In fact, our whole body feels more relaxed. It’s no secret that stress is bad for our health. Whether we now enjoy good health or happen to have a chronic or degenerative illness we benefit from being able to let go of unhealthy habits, including unhealthy habits of mind. It’s a terrible stress to our bodies and minds when we hold onto poisonous emotions, resentments, or negative thoughts of any kind.

Here are two key points to letting go: first, you have to want to; second, you need some degree of mindfulness and awareness. As soon as you notice that you’re holding onto a negative emotion or thought let it go. It may come back immediately, if so, drop it again. The next time you become aware that you’re holding on let go again. Don’t judge yourself, just notice and let go. As we get better at letting go we might catch ourselves trying to justify or rationalize holding on to a negative emotion or thought – don’t! That’s the time to let go.

Letting go is something that we have to practice over and over until it becomes a positive habit. The good news is: we all know how to let go because it’s what we do every time we go to bed and fall asleep. However, when letting go of negative thoughts or emotions instead of staying asleep and following the same old pattern, use it as an opportunity to wake up. Notice what’s happening in your mind and in your body, notice the anger or fear or resentment and let it go. When you truly let go your mind and body settle back into a natural state of relaxation and peace. And what a relief that is!

Contemplations

A pithy quote from the Book of Mathew in the Bible:
Mathew 6:27
Who of you by worrying can add a single hour to his life?

To paraphrase a wonderful teaching I've heard many times:
If you have a problem, or something is troubling you, and you can do something about it then there’s no need to worry because you can do something. If something is troubling you, or you have a problem, and you can’t do anything about it then there’s no point in worrying because you can’t do anything about it. In short, there’s never a need to worry.

From Bobby McFerrin’s famous song, Don’t Worry, Be Happy:
In every life we have some trouble 
When you worry you make it double 

If you’re not sure how to let go try this exercise, or visualize it well:
Hold a baseball tightly in your hand just long enough that it starts to feel uncomfortable but without hurting yourself. Then turn your hand over and drop the ball. Now observe how your hand feels. Your fingers are probably curled as if they’re still holding on and the muscles may hurt. It’s a similar process when dropping a negative thought or emotion. In order to let go you have to intentionally loosen your hold – just like opening your hand from around the baseball but instead of relaxing your finger muscles, you relax your mind. At first it can be uncomfortable and you might feel a strong urge to grab back onto the thought or emotion. With practice it gets easier. When we learn to let go it frees our mind, our energy, our body, and our heart.

Learn basic mindfulness practice:
Simple, guided mindful meditation instructions are offered on line by the UCLA Mindful Awareness Research Center: http://marc.ucla.edu/body.cfm?id=22


Monday, April 4, 2011

Stories we tell

Chronic illness and pain have a rough and rugged quality like so many of the backcountry places I’ve been. Sometimes that’s because I’m physically worn down by pain, just like I was physically exhausted at the end of a long day of backpacking. But other times my experience of illness is like a rugged adventure, an exciting discovery of new terrain – an exploration of someplace I’ve never seen or been before. Living with chronic illness or pain takes tenacity and perseverance; paradoxically, it can demand the patience and endurance of a world-class athlete.

At the same time there’s a choiceless quality about living with chronic illness – it’s something beyond our control. How we deal with it, however, is where we have a choice. It’s a choice we make each day, every hour, in each minute and moment. We can decide: “This is hell. I can’t take it any more.” That’s certainly something I’ve said and thought more times than I can count. Or, we might choose instead to have an attitude that says: “I wouldn’t wish this on my worst enemy, may no one ever suffer like this.” That’s a great thought of compassion: “May no one ever suffer this illness and this pain.” That way of thinking – which is a kind of prayer or aspiration – enables us to see beyond our own pain and develop genuine empathy and compassion. Paradoxically, it helps us to deal with our own suffering because we start to care more about other people. Instead of focusing on ourselves we are able to wish the best for other people, even complete strangers whom we’ll never meet.

When, however, we tell a story about our illness that says, “this is a hell,” then the experience becomes more intense and unbearable. When we stick to that storyline our world becomes very claustrophobic. There’s not a lot of room or space to work with what’s happening. It’s like being in a frozen world where everything is stuck and there’s no movement or possibility except this on-going experience that we’ve labeled “hell.” The story we tell becomes a self-fulfilling prophecy. If we have a tendency to perceive and label illness and pain in a strongly negative way then that will be our reality. Our experience will become more powerfully negative and more difficult to work with and live with. However, when we’re aware of the stories we tell they don’t have the power to lead us down deeply rutted tracks that leave us lost and stuck. It’s up to us how we deal with chronic illness, pain, or any type of suffering. We can shut down and withdraw or we can take the opportunity to open our heart to our own experience and to the people and world around us.

A recent tweet on DailyZen quoted the Austrian philosopher Ludwig Wittgenstein, who apparently once said (or wrote), “Don’t think, look!” That playful tweet is a pithy three-word philosophy for how to live life in a genuine and openhearted way. Without even knowing it, we limit ourselves all the time through our use of language and the stories we construct. When, however, we don’t tell a story about our illness or pain, or any aspect of our life, we have a chance to look directly and nakedly at our experience with an open mind – we have a chance to look with a fresh eye without our preconceived ideas. We can never step outside of language completely, but we can look at our stories, beliefs, values and preconceived ideas with an open questioning mind. By doing that we have the opportunity to touch our experience more deeply without so many layers of language and words leading us around like a bull with a ring in its nose. When we let go of our storyline we can instead just be with what’s happening – we can look and see what’s actually there. Who knows, we might discover something completely new.

Wednesday, March 23, 2011

Equanimity

In response to my first two posts a friend, who also has Lyme disease, sent me an email: “Nice, Cara. Not sure that I'll find the degree of equanimity that you've found, however. Love the snowdrops!!” To which I replied: “Equanimity! Hahaha! Equanimity is something I keep having to come back to hence the title of the blog: ‘Coming back to peace.’ I have to practice it – over and over and over again.”

With a quick google search I found the following definition of equanimity on miriam-webster.com: evenness of mind especially under stress.” It describes nicely the point of meditation practice, which is to become familiar with our minds so that we can ride the roller coaster of thoughts and emotions without freaking out. Contrary to what some might think meditation is not about getting rid of thoughts – good luck with that! The point of meditation is to develop mindfulness and awareness so that we aren’t jerked this way and that by our habitual emotional tendencies, concepts, and endless internal dialogue.

Equanimity takes practice, it’s the ability to be with whatever’s happening and not lose our cool. When we do lose our cool – which is certain to happen at some point – then equanimity is the ability to notice that we just lost it and climb back on the surfboard, skateboard, horse – you choose – and finish the ride. Then we use that as inspiration for next time so that when another big wave comes our way we have a chance to catch it before we’re slammed. 

Being sick is a lot like being slammed again and again by a huge wave. I never seem to get any ground beneath my feet. Some days I think to myself: “I am so fucked!” Sometimes I shout it out loud and that’s when I’m being most honest with myself because there’s nothing I can do. My situation can’t be fixed, changed, or solved. I’ve hit bottom. There’s no ground beneath my feet, there never has been any ground, the ground is only an illusion and all I can do is watch and be with whatever is happening in the moment – that’s equanimity in practice.

There’s tremendous wisdom in hitting bottom. In some ways it’s similar to what Zen practitioners refer to as “beginner’s mind.”[i] Beginner’s mind is fresh, open and without any concepts or preconceived ideas. Realizing that we’ve hit bottom is when we finally know that none of our concepts work. It’s when we know that no amount of effort on our part can change what we’re going through. Suddenly we can’t hold on any longer. We have no choice but to let go and when we do we discover that there is actually tremendous space in our situation. Like an eagle we might, for a brief moment, catch an updraft and realize that we can actually soar and then it all changes again. 

When we let go of our concepts and at the same time continue to hold our seat, not moving from that spot but continuing to look and stay with it, there’s an opportunity to see the basic sanity in our situation, the basic health that’s always there no matter how sick we are. Working with illness and pain in a productive way is, among other things, a practice of patience and equanimity. We come back to peace each time we let go of our concepts, internal dialogue and destructive emotional habits long enough to relax and enjoy the space that’s always there.

Note: From the Buddhist view sickness is sometimes considered a powerful path for practice. Why? First, there is no greater motivation for meditation practice than our own suffering and awareness of mortality. Second, touching our own pain at a deep level enables us to develop compassion and the motivation and aspiration to free other beings from suffering. Such an aspiration has tremendous benefit for oneself and others. It changes our whole intention and mindset toward other sentient beings and our world.

Learning basic mindfulness practice: There’s been a lot written lately about the benefits of mindfulness meditation for people living with pain and chronic or terminal illness. Scientific studies of the brain using imaging techniques such as MRI scans show that meditation alters the brain in significant and positive ways. Changes to the brain’s structure can happen relatively quickly even for beginning meditators who practice only a few minutes a day – consistency, however, is an important part of the practice. Anyone can learn to meditate. Simple, guided mindful meditation instructions are offered on line by the UCLA Mindful Awareness Research Center: http://marc.ucla.edu/body.cfm?id=22

For more information about mindfulness meditation, its benefits and positive effects on the human brain:


Washington Post – Monday, February 14, 2011
Meditation and mindfulness may give your brain a boost

Mindfulness-Based Stress Reduction Program


[i]In the beginner's mind there are many possibilities, in the expert's mind there are few.”
- Shunryu Suzuki, Zen Mind, Beginner’s Mind


Monday, March 14, 2011

The life we have

It’s tempting to think of illness as an interruption of our “real life,” as if we’ll get back to living once our health has returned. With a long-term or chronic illness, however, we may not know when or even if our health will return. Even if it does, we may never again experience the same level of physical strength and stamina that we once enjoyed. In that situation it can feel as if life is on hold, as if we cannot fully live or be happy without our previous level of health. However, as a friend once told me, “while you’re grieving for the life you used to have life is still going on. So live that life.”

In order to live well with illness we must figure out how to whole-heartedly embrace our experience rather than resent it. Resentment only compounds our suffering. And why resent our life just because we have an illness?  After years of being sick I’ve come to realize that illness is like the weather, we may not like that we’re sick, or that it’s raining, but neither illness nor rain are personal insults. Sure, being sick feels personal because it’s happening to our bodies but we make it worse when we take it personally, as in: “Why is this happening to me?”

Illness is simply a part of life; it’s an experience of life. How we choose to live with it, however, is up to us. Life doesn’t stop just because we’re sick. Our life may take a slightly or significantly different form as a consequence of illness but it continues. Even if we have a disease from which we won’t recover, life continues until the very moment of our death. How we live those moments makes all the difference in both the quality of our life and, eventually, the quality of our death.

Living well with illness is as easy, and as difficult, as simply accepting it. That may seem outrageous. Why, we might ask, should someone with cancer accept it? Because fighting or resenting it does no good. In fact there’s plenty of evidence to suggest that people who accept their illness – which is not the same thing as giving up or discontinuing treatment – actually do better physically and emotionally. Why? Because in the simplest terms they’re able to relax, which frees up energy that the body needs. People who can accept their situation tend to be happier and find more joy in living.

Instead of seeing illness as an interruption, an annoyance, a burden or maybe even a curse, we might think of it instead as an invitation to appreciate the fact that we’re still alive. Being sick presents us with an opportunity to look more deeply at our experience, at how we’re living and how we relate with other people and our world. I think of illness as an adventure and a process of discovery. For me illness is, among other things, a chance to practice being content and happy with what I have, rather than see my situation as one of loss. It’s a chance to explore the full range of my experience: pain, fear, anger, depression, grief, even gratitude and contentment. Whatever arises is basically okay. By bringing a gentle awareness and mindfulness to our situation whatever arises is manageable. When we can greet each moment, whatever that moment brings, however it manifests, with openness and a sense of genuine curiosity we can discover what it means to live the life we have.

Thursday, March 10, 2011

Ordinary Blessings

“What do you want to do,” my sister asked when I was released from the hospital. It was a bright blue fall morning the glorious kind of day when the leaves are at their brilliant peak, the sun is shining and the chill on the air makes you feel alive. “First I want to take a bath and then I want to go to a park.”

My entire family was gathered in Bellingham, Washington that week keeping vigil at St. Joseph where I’d been admitted in acute congestive heart failure. Luckily my symptoms had quickly stabilized during a short stay in the ICU, surprising everyone in the hospital. With the advice to “get on a transplant list as soon as possible” I’d been released after only four days. Nothing can quite describe the experience of walking out of a hospital into the light of an ordinary day when one has been close to death. In a sense it’s so simple and ordinary: walking down a hallway into a lobby, through double sliding glass doors and out into the world.

In truth, there’s nothing ordinary at all about any day. There’s nothing ordinary about living in a world that’s full of miracles. On some level we know that each day is a miracle. Unfortunately, it’s easy to forget how precious life is. For the most part we’re simply too busy, too distracted to appreciate the miracle of our own life. So we take it for granted. And contrary to what we might think, illness and misfortune don’t diminish that miracle while fame and money don’t enhance it. Perhaps the only thing that might truly undermine the miracle of our precious human birth is not appreciating it, not being mindful of it, not utilizing it to its fullest capacity according to our ability and the opportunities that come our way – even something as simple as the opportunity to be kind.

Boulevard Park

Boulevard Park sits along the edge of Bellingham Bay with views to the San Juan Islands in the distance. It’s a beautiful and popular destination. On a nice weekend the park is packed with people – ordinary people – and on this sunny fall day people were everywhere. Park benches line the water’s edge and we headed across the grass to claim one of them, dodging a Frisbee game along the way. I was walking slowly, weakened by an enlarged heart and limping with leg muscles stiffened from too many days in bed.

A week earlier I’d finished a solo backpack trip of the northern section of the Pacific Crest Trail. Starting at the Canadian boarder and ending at Rainy Pass on the North Cascade Highway, I’d walked the 70 miles in under a week. I’d planned the trip as an escape from civilization, preferring the solitude of wilderness to the company of people. But on this day that was for me anything but ordinary, as my brother helped me to the bench, and as I took in the sights and sounds of the many people sharing the park, I realized with the suddenness and surety of an epiphany that we bless each other by our very presence.

It isn’t necessary that we know each other, or that we smile at each other, or nod, or recognize one another in any way – although those things are certainly nice. It is simply that our presence, our life, the very miracle of our existence is in itself a blessing. We are, each one of us, a blessing. Every ordinary person is an extraordinary miracle and it is a blessing to be in the presence of another human being.