A super great thing about being really sick

One great thing about being chronically sick and disabled is that I have less energy for my own bullshit.

I have less energy for all the mental trips and games I normally play with myself and with other people. Of course these things are old habits but it’s much easier to drop a pointless and bad habit when you see immediately how sick it makes you.

So it’s hard to feel sorry for myself when I see that being sick is helping me to get real. I see how little time I have left and I don’t want to waste it.

We should all see how little time we have left. When we truly know how short our life is we have a chance to sober up and quit wasting this precious opportunity.

And what is this rare and precious opportunity?

It’s our chance to cut through all our habits and games to the very core of the reason why we’re here which is to love. Love what? Love whom? Love how?

Just love.

This isn’t a self-improvement project.

Be who you truly are which is utterly naked like the wind and the rain and the earth, not pretending to be something or someone else.

Do it now. It can only happen in the space of now. 

Cultivating peace and happiness within the experience of loss

Chronic illness is among other things an experience of profound loss. The loss of one’s health necessarily means a host of other losses that can include one’s friends, family, job, home, security, independence, mobility, strength, and stamina – the list can be almost endless. But it doesn't have to include happiness and peace of mind.

In fact we can use the opportunity of illness and suffering to generate something that Buddhists refer to as boundless joy - sometimes called sympathetic joy.

How do we develop such a quality of joy? By rejoicing whenever we see or hear of someone else’s good fortune. We have lots of opportunities to practice sympathetic joy because when we’re sick we often see or hear about other people enjoying life in ways we no longer can.

Of course it isn't always easy to feel joyful especially if we have habits of jealousy or resentment, which most of us do to some degree. This is our chance to become familiar with some of our negative habits and develop positive ones instead. At first it takes practice. In the beginning we have to make some effort but eventually feeling genuinely happy for other people becomes a new habit.

If we notice we’re feeling resentful or jealous that can be a reminder: “oh, yeah, instead of feeling resentment I can use this chance to practice feeling joyful.” Then we flip the negative habit – we drop it – and give rise to  happiness for the person towards whom we were feeling jealous. We smile and feel genuine happiness in our heart that the other person is happy and that good things are happening for them.

Notice that the happiness is in our own mind and heart. It actually feels good! With a little practice we start to automatically feel happy for other people when good things happen for them. We start to develop a happier and more peaceful mind.

This is part of a Buddhist practice called the Four Immeasurables: boundless equanimity, boundless compassion, boundless loving-kindness and boundless joy. They are called “immeasurable” or “boundless” because we cultivate these qualities towards all sentient beings. Since the number of sentient beings is considered to be infinite these qualities are also infinite as we develop the ability to extend them to all beings.

In brief, equanimity is considering all beings including friends and enemies as equal and having no partiality towards those we think of as friends or enmity towards those we consider enemies. Compassion is the desire to free all sentient beings from suffering and loving-kindness is the wish that all sentient beings have happiness.

We can use the opportunity of chronic illness to develop all of these qualities. When we suffer we can think that we don’t want anyone, not even someone we might think of as an enemy, to have such pain. Then we can extend our compassion and think how we would like all beings to be free from suffering. We think how wonderful it would be if all sentient beings were happy; we make the wish that everyone would have everything they need in order to be happy. Then we can practice sympathetic joy by rejoicing when we actually see that other people are happy.

When doing these kinds of practices it’s best to start with those we care about and have some feeling of affection for, otherwise it’s too difficult. Gradually we can extend these practices towards those for whom we have neutral feelings. Eventually we can include people we have difficult relationships with or whom we think of as enemies or have some feelings of revulsion or aggression towards.

In the Buddhist tradition when we do such practices at the end we always dedicate the merit so that all sentient beings have happiness and are free from suffering. These profound practices enable us to generate vast loving-kindness and compassion as well as a happy and peaceful mind.

For you who consider suicide

Note: This article is for readers who may be having suicidal thoughts now or who have had such thoughts in the past and are not in immediate danger of acting on those thoughts. If you are at high risk of committing suicide please call a crisis line now: click here for phone numbers. If you are an immediate danger to yourself call 911 now.

Living with chronic illness is sometimes an exercise in managing overwhelming grief and despair. Days slip by in a blur of pain and fatigue. Social connections and community ties drop away. Friendships disappear because we don’t have energy to maintain them. Isolation becomes a kind of prison. Everything is hard to manage. Limited resources – physical, financial, mental and emotional – are stretched to the breaking point.

Without support from family and friends our most basic needs may not be adequately met as our collective social safety net is eroded to almost nothing. Because our society places a high value on productivity it is unforgiving to those of us who are unable to contribute in the workforce. If we’re unable to work we may begin to feel that there’s no purpose to our life. Even in the best of situations hopelessness and despair can be frequent companions.

Any or all of these things can snowball until suicide feels like the only, or perhaps best, option. Our world becomes a claustrophobic hell of suffering and we just want out of it. In those darkest moments how can we resist suicide?

Here are four techniques I use:

1. I remind myself (over and over again) that despair and depression are temporary; eventually they recede in intensity even if they don’t entirely go away. No matter how much despair I may be feeling or how many suicidal thoughts I have I don’t act on them. We live in a culture that values action and when we’re suffering we may feel like we’ve got to do something, anything, to make it stop. No matter how strong the impulse I resist the temptation to act on my suicidal thoughts. Instead, I try to sit with and simply be with whatever is happening. I sit with the depression and pain, whether it’s physical or emotional or mental pain, and try to relax as much as possible. By relaxing even just a little bit depression and pain can become more bearable. The more we can relax the more bearable our situation becomes.
2. When I’m having suicidal thinking I reach out to a friend or family member so that someone knows what’s going on. It’s not easy to do but it actually keeps me safer. In the past I’ve asked people to make me promise not to hurt myself. For me that’s been a powerful lifeline. If I make a promise to a friend or family member that I’m not going to hurt myself then I feel a responsibility to uphold that. It’s a bargain I’ve made with someone else that I feel a need to adhere to. It’s important to remember that the person we reach out to wants to be there for us. Our life matters to them even if, in the moment of our worst depression or despair, it no longer matters to us. Eventually we will value our life again and then we’ll be grateful that we reached out for help.
3. Over many years of working with severe depression I’ve learned to think of it as something that is completely impersonal. I try to see depression, to relate to it and experience it, as if it were nothing worse than a temporary weather system that’s set in – a long stretch of gloomy rainy days that will eventually lift and move on. This technique is similar to the first point above because it involves a willingness to simply be with what’s happening, to relax with it and wait it out.
4. Whenever we resist the urge to commit suicide – and instead protect our own lives – it becomes easier for others to do the same. No matter how depressed I am I keep resisting suicide in order to help other people. It’s well known that suicide runs in families and can span multiple generations. As my therapist once said, “suicide is a terrible family legacy.” Suicides often come in clusters within the larger community as well. When a person takes their own life it increases the risk that another person – whether a family member or stranger – may do the same. By resisting suicide we may actually save another person’s life. We may even save the life of one of our own future descendents or relatives. And that’s worth doing.

One day when I was in particular pain and thinking about suicide it occurred to me that if I’m really willing to take my life then I ought to be able to find the courage to face my life. It really helped. I had this sense of fearlessness. Because at that point, when I’m willing to end my life, then I’ve got nothing to lose. So why not continue to live? When there’s nothing to lose that means we’re beyond hope – we’re experiencing hopelessness – but since hope and fear always go together like two sides of a coin that means we’re also beyond fear. We can be fearless. At least for a little while we can experience that. We can have a taste of what that’s like.

When there’s nothing to lose what’s actually left is kindness and compassion. We can experience what it’s like to have a fearless kindness and compassion for ourselves. Love, compassion and kindness have always been the most important things. So we have this amazing chance; we have this precious opportunity to extend kindness to ourselves and to others no matter what’s happening, no matter how sick we may be, no matter how much pain we may be in. What does that look like? It’s just as simple as a smile. Of course we can’t smile all of the time, but if we smile once in a while that’s good enough.

Years ago a friend sent me a card with a famous saying from the Talmud: “And whoever saves a life, it is considered as if he [or she] saved an entire world.” The life we save can be our own. Our life, no matter how seemingly ordinary, is a miracle and the smile we share with another may end up traveling around the world. If we aren’t here to share that smile when it’s our turn to pass it along it will never reach the next person who needs it.

My Story: what's wrong with me?

In 1992 I moved to New Mexico to attend graduate school in Albuquerque. I was 32 and in excellent health, or so I thought, but by 1995 I knew something was wrong. My hands and feet burned and tingling, a curious sensation that was especially acute at night when I was in bed. I developed sudden and severe seasonal allergies, had increasing sensitivity to chemicals and fragrances and experienced periodic muscular weakness in my legs.  Stabbing pain in my head made me fearful that I was having small strokes. Looking back, signs of illness were clearly apparent by my late 20s. There were years of drenching night sweats along with swollen and painful lymph glands, insomnia, anxiety and extreme weight loss. When in my thirties the muscular and neurological symptoms first appeared I assumed it was the onset of MS but without medical insurance had no ability to see a doctor.

Despite increasingly strange symptoms I still enjoyed a reasonable level of health. Then, in September 1998, after a day spent rock climbing in Canada and only three days after finishing a 73-mile solo backpack trip, I found myself in a hospital in acute congestive heart failure. My heart was enlarged and seriously damaged with significant left ventricle failure. At the time I was told there was no hope for recovery and advised to get on a transplant list. By a miracle, over the course of several months my heart recovered its mechanical (pumping) functioning with only minor residual damage to the electrical system. It took a year and a half to regain much of my strength but by summer of 2000 I was biking to work. For a couple of years I was able to take long walks, do some modest cross-country skiing and even managed one 40-mile backpack trip – the last I would ever take. 

In early winter 2004 my health took a sudden nosedive. I could no longer bike to work and spent increasing amounts of time on the couch during the weekends. I had episodes of breathlessness and alarming cardiac arrhythmia when walking. By spring I was having problems at work. Most disturbing was the decline in my cognitive functioning. Once mentally agile I was now easily confused. I suffered from memory loss and struggled with word recall; my comprehension was poor and I had difficulty tracking and assimilating information. A tremor that manifested in my early 30s was significantly worse. My gait was unsteady and I couldn’t walk a straight line. When walking the long corridors of my office I bounced off the walls, bumping first into one then overcorrecting and staggering into the next.

By June I could no longer work and had difficulty getting out of bed. All of my muscles hurt. My legs were so weak they shook with the effort of standing. I was exhausted and spent all my time in bed or on the couch. I didn’t have the strength to clean house or do laundry – cooking was nearly impossible. Finally, unable to care for myself, I spent two month living with family. Along with all the other symptoms I had a constant headache, abdominal pain, dizziness and nausea. The tingling and burning in my hands and feet had moved up into my arms and legs and caused constant pain during the day and night. Bright lights and loud noise hurt my head. Curtains were kept closed to keep rooms as dark as possible. I was unable to watch television, read, use a computer for any significant length of time, or even talk on the phone.

Despite the severity of my symptoms I had no identifiable disease. Two doctors diagnosed me with chronic fatigue and fibromyalgia but those diagnoses failed to identify what was actually making me sick. Routine blood tests came back normal. A neurologist assured me nothing was wrong despite severe cognitive problems and the fact that my muscles weren’t functioning properly. Doctors were focused on the scope and severity of my cardiac arrhythmia – a twenty-four hour Holter monitor failed to record one normal sinus rhythm. In August thyroid tests came back positive for Hashimoto’s Thyroiditis. My cardiologist had me on medication for tachycardia and was threatening to do a catheter ablation to burn out the area of my heart that was misfiring. But neither treatment addressed the underlying cause of my illness – a wonky heart and thyroid were mere casualties of a war raging in my body.

Panicked, I spent what little energy I had when I could actually get off the couch scanning the web for clues that might point to what was wrong. I began to suspect an environmental cause and searched, without much luck, for information about mold. The apartment building I lived in was old. There was obvious mold on windowsills and the kitchen fans vented straight into the roof. I even removed electrical plates to peer into walls but without any luck. Unfortunately, information about mold illness was still in its infancy and I gave up pursuing that possibility.

My google efforts eventually lead me to suspect Lyme disease – the only illness I could find that listed all of the symptoms I had. My naturopath ordered a PCR test that came back negative. When I finally realized that doctors were never going to figure out what was wrong with me I quit seeking medical help. In September I moved in with a friend and slowly recovered enough to return to work part-time. By March 2005 I was able to get another apartment and live by myself but my health remained extremely fragile. In July 2005 I had a pacemaker put in.

I limped along until spring 2008 when the research institute that I worked for relocated to another building. Within weeks I started getting sick and suspected that the building was the cause. There was a terrible odor in my office and I kept the window open all the time. Co-workers complained to each other about the building but there was little we could do against a powerful state institution. By May I was in trouble. My cognitive function was deteriorating again. One day I got in the car to go to the chiropractor but when I drove to the end of the block I froze at the stop sign; I couldn’t remember how to get to his office.

In June 2008 I had a complete relapse; all of the old symptoms returned with a vengeance. Once again I was unable to work. I spent most of June in bed and on the verge of having a seizure. Sometimes I’d lie on my bedroom floor and put my head in the closet with a sleeping bag over it just to close out all light and sound. In August I started seeing a naturopath who diagnosed me with Lyme disease. At the time it made sense. I’d grown up in rural north Idaho where ticks were common and had spent years hiking and backpacking. In September I started antibiotic therapy and spent six weeks living with my parents.

In late fall I returned to my apartment and part-time job. Now the office building was even worse. In my absence they’d started a remodeling project. The first day they painted near my office I was exposed to fumes for nearly seven hours. I was so sick I barely made it home. All of my muscles burned, the back of my neck felt like it was in a vice, I had chills and a headache and felt like I was going to projectile vomit. For three hours I saw a blue fog everywhere. My muscles shook and twitched uncontrollably – I thought I was dying and I knew I couldn’t go back into that building.

My supervisor approved a telecommuting schedule and I found an office in another building on campus that I worked from two days a week. I struggled to hold onto my job while being treated for Lyme disease. A year and a half of antibiotics did nothing to improve my health, which continued to deteriorate. By May 2010 my supervisor insisted that I return to the office. Every time I went into the building I got sicker. In June I went on a year-long sick leave but by then my health was ruined. I left Seattle, moved in with my parents and applied for disability. A year later, in June 2011, I officially quit my job.

In summer 2011 I started reading Dr. Ritchie Shoemaker’s book Surviving Mold. In August a genetic test came back positive for one of the worst HLA genotypes for mold illness, the “dreaded” 4-3-53. In January 2012 I traveled to Maryland to see Dr. Shoemaker. Thorough blood tests confirmed biotoxin illness from exposure to mold. All of my symptoms going back nearly 30 years are the result of chronic inflammation caused by mold toxins. Even the cardiomyopathy (heart failure) may well have been caused by inflammation associated with biotoxin illness.

For information about biotoxin illness caused by mold: www.survivingmold.com/diagnosis
See also my previous post:
http://comingbacktopeace.blogspot.com/2012/06/biotoxin-illness-basics.html

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

http://www.mindfullivingprograms.com/whatMBSR.php

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[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