Category: disability

I wrote this in October of 2010.  I still refer to How to Be Sick on a regular basis. 

Toni Bernhard: “There is sickness here, but I am not sick.”

Life is suffering.  It’s not a punishment, it’s not a consequence, it’s just life.  I was fortunate to read How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Care Givers by Toni Bernhard (Wisdom Publications 2010) at a time when I was having a severe bout of insomnia that led to depression and an inability to coherently review the book or work on my websites.

My insomnia is often exacerbated by pain because of arthritis in my hip, knee and feet.  I have tried to make a place for insomnia and pain in my life and not blame myself for it.  It’s odd how we blame ourselves for the medical conditions – we always think if we had exercised more, eaten better, been a better person then we’d be experiencing great health.  I use these times now to read, look at art books, treat myself to little indulgences.  Still, it’s hard after a few nights not to despair – I know the wired insomnia energy will end with a huge bout of fatigue.

My first night with this book, I read through to Chapter 5: Who Is Sick?  She recalls a story by the Theravadan teacher Kamala Masters about her teacher who was quite old and had to endure an arduous journey with no food or water.  “She asked him if he was all right.  He replied, ‘There is heat here, but I am not hot.  There is hunger here, but I am not hungry.  There is irritation here, but I am not irritated.’”

Bernhard reports, “I recalled Kamala’s story one day as I lay in bed after becoming sick, so I silently said, ‘There is sickness here, but I am not sick.’  The statement made no sense to me.  But, inspired by the story, I persevered, repeating over and over, ‘There is sickness here, but I am not sick…There is sickness here, but I am not sick.” After a few minutes, I realized, ‘Of course! There is sickness in the body, but I am not sick.’  It was a revelation and a source of great comfort.  After a time, however, I decided to investigate more deeply.  When I did, this question arose, ‘Who is this I who isn’t sick?’”

It’s very hard to see yourself beyond what is irritating, hurting or keeping you awake.  Years ago, I heard a scientist on some documentary say, Even when you’re dying a large percentage of your body is still working fine.

I began then to try to get myself to pay attention to the parts that were working well and not give all the attention to the “squeaky wheels” of my body.

How To Be Sick is a guide to help you become familiar with that person who is not a sickness, but an individual capable of a joyful life, even though that life may have turned out vastly different than what you planned.  It’s also a guide for discovering who you are even if you’re perfectly healthy.  Bernhard was a student of Buddhism before she got sick and had already done a lot of work toward the Buddha’s teachings on “no-fixed-self.”

There is a lot fight in her to maintain her sense of self, but she’s let the illness guide her to a fuller interpretation of self, that can include sickness.  She contracted an acute viral infection on what was supposed to be a vacation to Paris in 2001.  She never recovered and is now living a largely house-centered life.  Even sitting up for long periods of time can exhaust her.  She has tried numerous treatments from the medical and alternative health communities but is still sick and may be that way for the rest of her time on Earth.

“For me…reality meant having the symptoms that accompany a severe flu, including the dazed sick feeling and low-grade headache, but without the fever, the sore throat, and the cough.  To imagine it, multiply the extreme fatigue of a flu by an order of magnitude.  Add in a heart pounding with the kind of wired, oppressive fatigue that healthy people associate with severe jet lag, making it hard to concentrate or even watch TV – let alone to nap or even sleep at night.”  She lists all the varying diagnoses she’s had that are variations on the Chronic Fatigue Syndrome “garbage pail” diagnosis.

In 1982 she received a J.D. from the School of Law at the University of California, Davis.  She joined the faculty and served for twenty-two years and also served as Dean of Students for six years.  In 1992, she began to study and practice Buddhism.  She went on yearly retreats to meditation centers and led a meditation group of her own.

This practice allowed her eventually to see herself as no-fixed-self and not some idea of a “sick person.”  She writes: “When you are chronically ill…you have to make some very hard choices.  Ironically, people may think you’re giving up, when in fact you are simply giving in to the reality of your new life.”

She quotes Byron Katie, “You can argue with the way things are.  You’ll lose, but only 100% of the time.”
Instead of continuing to argue with reality, Bernhard  spends that energy sharing what she’s learned from her teachers and her own experience about the whole concept of life and suffering.  She affirms that we can find the joy in the lives we have.  She gleans wisdom not only from Buddhism but from stories she’s found from others on coping with illness and death.  She is supremely grateful to have insurance and a loving family.

Buddhism has taught me much, as have most of the spiritual disciplines I’ve studied.  But I’ve always had a monkey mind (I call it popcorn brain), and even after studying at the Buddhist Naropa Institute in Boulder in 1978, I was never able to successfully meditate in the traditional sense.   For one thing the lotus position hurt me.   I could never empty my mind unless I was reading or writing, and later in life creating art.
So I was thrilled when I read, “My online wanderings revealed that many people, regardless of their religious affiliation, found that starting a meditation practice was the single most helpful treatment they tried.  So, Buddhist or not, many people turn to meditation when they become chronically ill.  This devoted Buddhist, however turned away from it.”  It was just too hard when coping with her symptoms.  She began to focus on the “mindfulness of the present moment.”

I was 2 years into my neurological disability when I went to Naropa, my right leg had already started to weaken and atrophy.  I was on medication for epilepsy and had a lot of headaches.  I had “drop foot,” the right foot always in the down position, and my gangly galumphing walk.  The great thing was there were some wonderful people who could meditate and tell me their stories.  I learned even as my mind swung around from tree to tree.  I was there to study poetry first and Buddhism second.  I always felt I’d missed something valuable by not being able to sit more than a few times through the group meditations.  Later I realized it was the stories that remained with me, the lessons taught, more than the actual method I used to learn and rest my mind.

The stories Bernhard tells, the lessons she gives, the exercises she stresses offer such a soothing balm.  The reading is a meditation in itself.  There is a “Broken Glass” lesson that deeply touched my heart and gave me a profound sense of compassion for myself, others and life in general.

She has been blessed with a very supportive husband and caregiver who also practices Buddhism.  The lessons in How To Be Sick can help alleviate some of the isolation and resentment caregivers feel when a loved one is taken ill.  Life is change – a lot of the suffering of life is our inability to cope with change.  This book offers good coping exercises, even if you’re not Buddhist.

I had hoped that the writing of this book gave Bernhard a sense of well being, and it did, but the actual process of it was arduous and sometimes exacerbated her symptoms.  She wrote about this process in the preface of the book and how she was sometimes unable to work on it for months.

Hard-headed in my belief that art processes heal, I asked her through an email if she felt writing the book actually helped alleviate  symptoms, since that is my experience with pain.  She wrote, “You asked if writing alleviates my symptoms. I wish I could say ‘yes’ but, unfortunately, unless I’m very disciplined and pace myself, it can make them worse (as I write about in the Preface of the book). That said, I find it so satisfying that I’m willing to feel worse sometimes in order to finish working on a piece that’s important to me. So, the act of creating is healing — to my spirit and my mind — but, unfortunately, not to my body!”

Ah yes, the spirit and mind can not necessarily influence the stubborn agenda of the body.  But a creative discipline can make living in the body a deeper, richer experience, no matter the circumstances.