The notion of "surrender" is not one we cling to when it comes to illness. Rather, the words we use are more of the kind that represent battle, of winning: kick this thing, beat that one, fight this symptom, head that one off at the pass. There is nothing wrong with any of this...unless they make you feel worse that you already do. When that happens, the power we feel evaporates, the will to forge on lags. Then what?
Toni Bernhard's book, How To Be Sick--A Buddhist's Guide for the Chronically Ill and Their Caregivers, is an invitation to gently set aside the fear and the fight in order to truly live. It is based on principles of Buddhism, which she carefully applies to her own chronic and at times debilitating illness. She offers a different perspective on illness and wellness, suggesting the two need not be mutually exclusive. Until forced to retire due to illness, Toni Bernhard, who has a longstanding Buddhist practice, spent 22 years as a university law professor in California, which included six years as a dean of students.
If you are new to Buddhism, or the notion of surrender, give your mind a chance to let the words seep into your consciousness. Learning "how to be sick" is not about becoming passive or indifferent. It's about accepting the current state of your health and, with that as your starting point, learning to take the best care you can of your body and your mind," Toni Bernhard says. To explain further, Toni has answered a few questions, below.
Meredith: What do people most misunderstand about learning how to be sick? Why is this an important thing to "learn?"
Toni: Most people misunderstand that learning to be sick is not about mounting a militant resistance to our medical problems. This mentality (which is quite common unfortunately) only adds mental suffering to our physical suffering.
People who are chronically ill or otherwise disabled have to make a lot of tough choices. (I had to give up my beloved 20-year career.) Some people misunderstand and think we are giving up when, in fact, we are merely acknowledging the reality of our lives. Giving up the constant fight against our medical difficulties is the beginning of a healing process - a healing process in the mind.
Many people blame themselves for their health problems as if it's some personal failing on their part. I did so for many years. Then I began the process of learning how to be sick which means learning skills to help us live gracefully and purposefully despite our physical limitations. Without these skills, we're likely to spend our lives being bitter and cursing our fate which only worsens our overall health. With practice, we can learn that, although our bodies may be sick or otherwise disabled, our minds can be at peace.
Meredith: How does embracing illness lead to liberation rather than denying illness, but then being dominated by its symptoms?
Toni: Everyone's life has its unique mixture of joy and suffering. For some, suffering may include tension on the job or in a relationship. For others, it may include illness or some other kind of disability. For those of us facing unexpected medical challenges, to deny that our life has taken this turn is like hitting our heads against the wall. It only increases our pain.
We have the life we're given. For the most part, we can't control what happens to our bodies. They get injured. They get sick. They get old. To deny that fact of life just adds mental suffering to our physical difficulties. I haven't embraced illness in the sense that I've given up hope that I'll improve or get better. I do hope for that and I'm always on alert for new treatments. The way I have embraced my illness is by "starting where I am" and that's with a body that is sick. The reality of my life right now is that I'm in a constant state of flu-like symptoms. When I began to take that as my starting point, I was able to look around and see what life had to offer within the limitations imposed by my illness. That was a liberating moment for me. It's amazing what can be done from the bed - from socializing with people online to artistic crocheting to writing a book!
Meredith: Can you provide a user-friendly list as to what people can "do" when nothing appears to be working--when they feel they are progressing backwards?
Toni: When people feel that nothing is working, it's usually because of the relentlessness of their symptoms (pain, devastating fatigue, cognitive difficulties to name but three). It can feel as if our lives and, indeed ourselves, are nothing but distressing symptoms. When this happens, the first step is to acknowledge whatever emotions you're feeling at the moment - anger, frustration, fear. If you deny their existence it only strengthens their hold on you. You can even try to open your heart to these painful emotions because they are all part of the human experience.
Second, recognize that even though your body is suffering and your emotions are painful, change is a universal law. Everything is in flux. Your symptoms will change. Your emotions and your mood will change. They are as changeable as the weather. The way you feel now is unlikely to be the way you'll feel tomorrow or even in an hour. This recognition should enable you to relax a little and give you some space to breathe because you've broken up the sense that these painful symptoms and emotions are fixed, solid entities.
And then, lastly, begin to cultivate more gentle and soothing emotions like loving-kindness, compassion, and equanimity. With practice, you can learn to replace painful emotions with these sublime ones.
Cultivating compassion for our bodies is perhaps the kindest thing we can do for ourselves. Pick a phase that resonates with you and repeat it silently. I often say, "My sweet body, working so hard to support me." You might choose, "It's so hard to be in pain all day." I often pet one arm with the hand of the other as I repeat my chosen phrase. This simple physical action never fails to soothe me and return me to the path of accepting with grace this unexpected hand I've been dealt.
Meredith: What do you tell yourself when you are frightened? How do you move from the fear into a place of calm?
Toni: When I'm frightened, I tell myself that everyone gets afraid at times and that it's okay. It's just part of being alive. Fear arises when we spin stressful stories about our future and then convince ourselves that the truthfulness of these stories is set in stone: "This pain will never go away"; "No one wants to spend time with me"; "I'll never feel joy again."
After acknowledging that everyone spins these fear-filled stories about their lives, I start to move out of the fear and into a place of calm by questioning the validity these thoughts. There are many effective practices for doing this. For example, in Zen Buddhism, there's an expression: "Keep a Don't Know Mind." Do I know for sure that no one wants to spend time with me? At first glance it may seem true. But am I absolutely sure? No! Do I know for sure I'll never feel joy again? No! Or that this pain will never go away? No! The lesson here is that although we can't control the thoughts that pop into our minds, we can learn to control our reaction to them, meaning we can learn to question their validity.
Another practice I use to move from fear to a place of calm is to ground myself in the present moment. There are several techniques for doing this. I'll mention two. First, when I'm caught up in a repeating cycle of fearful thoughts, I often gently but firmly say "drop it" and then immediately direct my attention to some current sensory input. It could be a sight, a sound, a smell, or a tactile sensation like the feel of my body on the bed. I immediately feel the fear release. When we direct our attention to the present moment, fear is simply not there because fear resides in stories we tell ourselves about the future.
The second way I ground myself in the present moment is by simply describing what is happening to me right now. This is a practice I learned from the remarkable Byron Katie. I ask myself: "What do I know for sure in this present moment?" It might be "Woman lying on a bed, resting." So I just describe what I'm physically doing in the present moment, leaving out the fear-filled storyline. It takes the powerful punch right out of those stressful thoughts.
Grounding ourselves in the present moment is a great antidote to fear.
Finally, with the fear subsiding, I continue to move myself to a place of calm, by directing loving-kindness or compassion to myself to soothe my body, heart, and mind by repeating phrases such as: "May I be at ease; may I be content; may I be at peace."
I know that fear will be back. As I said, I can't control the thoughts that pop into my mind. But I know what concrete steps to take when it returns so that I can swiftly see it out the door!
Meredith: When you find yourself angry at a physician, hospital or other helping professional, what have you learned to do to take the best care of yourself. Can you take us through the mental steps?
Toni: First, I try to stop my mind from making it worse by spinning out a story that may not reflect what really happened. To do this, I've learned to always ask "Am I Sure?" before I make assumptions about others. So I'll ask, "Am I sure this doctor didn't want to treat me?" Maybe she was terribly overbooked today.
Second, I cultivate equanimity which, according to the dictionary, means "mental calmness and evenness of temper, especially in a difficult situation." Practically this means that sometimes the world around us will live up to our hopes and expectations and sometimes it won't. Reacting in anger when it doesn't only increases our suffering. The essence of equanimity is accepting life as it comes to us without blaming anything or anyone. Then from a place of calm, I can take measured, concrete steps to improve the care I'm getting. This might mean finding a new doctor or contacting the patient advocate for the hospital or other medical facility from which I received poor care.
Toni Bernhard is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers (Wisdom Publications, September 2010). Toni can be found online at her website: www.howtobesick.com