Living with Uncertainty and Illness by Dr Ira Byock
All the passages below are taken from Ira Byock’s book, “The Four Things That Matter Most”, published in 2004
If by chance you are living with an illness, please be kind to yourself. Have mercy! Don't expect to be a perfect patient. You can't be ill perfectly. You are just human. Thankfully, that's good enough.
It is astounding how many people struggling with chronic conditions (such as cancer, heart, lung, or kidney disease, crippling arthritis, or strokes) also suffer from embarrassment or even shame at being sick. We instinctively look for the causes of the traumatic events in our lives. An unintended consequence of our preoccupation with exercise, diet, and healthy lifestyles is that when we become ill, we think we're somehow at fault.
If we learn that someone has cancer, we think, "Well, she is a smoker." If we hear that a coworker was injured in a serious car accident, we ask, "Was he wearing a seat belt?" We explain away other people's misfortune in a futile attempt to protect ourselves from our own fragility and mortality.
When our time comes and sickness or injury forces us to face death, the question for each of us will be, Can we show ourselves the same mercy that we would show to another person who is living through this unwanted, inherently difficult time of life?
"I Am Not a Bad Person"
Often when I sit with people who are dying and struggling with feeling worthless or unworthy, I ask, "What have you really done so wrong? We're here together, there's no one else here with us, tell me the secret. Who have you killed this week? What horrible acts have you committed that make you feel unworthy?"
If they can't convince me of their wretchedness (and no one yet has) I ask, "Now that you know that time may be growing short, can you finally accept the fact that you are indeed worthy and lovable?"
It's poignant to sit with someone who was a smoker and is dying of lung cancer. They feel guilty for having brought misfortune on themselves. I ask them, "Do you think that if you never smoked, you would have lived forever? Really, your main diagnosis is not cancer or heart disease; it's being mortal."
I ask them to engage in a therapeutic exercise. "I want you to look in the mirror and see yourself, fully acknowledging that you have been a smoker for twenty years---and that you would still like a cigarette right now!---and I want you to say, `I am a good person."'
That's difficult for many people. Sometimes I suggest a meditative exercise for people struggling with this sense of being unworthy. I teach them to relax, eyes closed, and envision a wheel on the edge of which is written, "I am not a had person. I am not a bad person."
I say, "Can you use that image and those words when you are alone with your own thoughts, as a way of relaxing and challenging yourself in a loving way to accept your inherent worthiness?" Sometimes people say, "Oh, Doctor, I couldn't do that." They get squeamish, as if it is unseemly to feel that good about themselves.
If they are with me this far, I tell them, "This is just the first step. When you are able to say to yourself, `I am not a had person,' I will raise the bar and ask you to imagine the edge of that wheel inscribed with the phrase, `I am a good person.' There are people around you who love you, who want you to know how deeply they love you, but unless you can feel a sense of your own inherent worthiness, you will not be able to feel how much love there is for you."
Accepting your Humanity
If you are stuck in guilt about being ill and unworthy of love, you won't be able to experience the acceptance others have for you. You will never be able to understand or feel how important and valued you are in their eyes. That is real suffering: to feel isolated, unworthy, and alone in the midst of those who do love you. You need not let that happen because you are worthy. Our imperfection is a sign of our humanity. It makes us real.
Anyone living with serious, debilitating conditions has something to teach all of us, whether we're ill or not. Being ill and physically dependent has nothing to do with dignity. Physical frailty is not a sign of personal weakness or moral insufficiency. It is simply and inevitably part of all of us. We would never consider the complete physical dependence and utter incontinence of an infant to be in any way undignified. It is simply part of being an infant.
Think of how you feel toward infants who depend on their families or others for every physical need. We love them. We pamper them; we couldn't do otherwise. If we ignored them, we would be less than human. I mean this literally. There is a body of research on the biology of altruism that makes a strong case that humans possess an innate drive to care for others. We are hard-wired to clean, feed, and nurture babies. People hum, coo, and sing to infants not only to comfort them, but evoke a smile.
Now ask yourself, Will those babies be less deserving of loving care and attention when they are seriously ill, frail, elderly, and once again physically dependent? Even when they are once again incontinent, as virtually all human beings will once again be? Would we not bathe and cleanse and hold and nurture them as others once did when they were infants?
As adults we tend to think that our accomplishments and standing in society somehow shield us from the supposed indignity of physical dependence. This is an illusion.
In an emergency room the vulnerability and fragility of our bodies are inescapable, but so is our fundamental commonality. A person doesn't have to be dying to be utterly dependent and in need of care. I once cared for a powerful politician who was half-carried into the ER, drenched in sweat and doubled over in pain caused by the kidney stone he was trying to pass. And I recall a wealthy, prim middle-aged woman who came in by ambulance, severely dehydrated from uncontrollable vomiting and diarrhea due to stomach flu. In such inherently ungraceful circumstances, dignity resides in wise recognition of one's predicament and a gracious acceptance of help from others.
Our Inherent Dignity
If you are reading this when you are dependent on others for care---even dressing, eating, bathing, and toileting---please have mercy for yourself. Don't worry about being undignified. Your dignity is intact.
People are inherently dignified. The notion that sickness or disability is somehow undignified is the source of endless, unnecessary suffering. It's heartbreaking to meet people who are embarrassed simply because they're ill or need help from others. My father was the person who showed me this cultural trap. If we believe health and independence are absolute virtues, illness and physical dependence can feel like personal failures or even vices. In 1980, I was driving Dad home after a radiation treatment he received for his pancreatic cancer.
He sat next to me in the front seat of his station wagon as I took a scenic route along the Jersey Shore, heading to the home where I grew up. At a stoplight I looked over at him and let my gaze linger a moment. Before the cancer, Dad had been a heavy-set man. Baking was his only hobby and eating his main passion. Now his appetite and energy were all but gone. He had lost his zest for life. He appeared deflated, as though the wind had been knocked out of him. The bones of his face were prominent---his skeleton asserting itself.
We knew that treatment couldn't cure him, but hoped it might buy him some time. I knew that time was precious and wanted to savor every minute we had. My mom wasn't expecting us for at least another hour, so I asked Dad if he wanted to get a cup of coffee or a hot dog at a favorite lunch place owned by a friend of his.
He said, "No, I don't think so." When I persisted, he said, "I don't look so good. I look sick and I think I smell bad, sick-like, too." I hid my tears from him as I drove, but I will never forget the unfairness of my father feeling embarrassed simply for being ill!
Americans have an exaggerated notion of the importance of being independent and self-sufficient---both of which can be virtues. At some point, however, it is entirely appropriate to rely on others. It is important to recognize your need for others when you're ill. To do otherwise is unhealthy, not just physically, but also emotionally. I have seen people who refuse to do so: the hard-charging executive who refuses to admit that his heart condition is forcing him to slow down; the frail, forgetful 85-year-old woman who refuses to stop driving. At some point it becomes just plain unnatural.
Some self-help books have made "codependence" into a pathologic diagnosis. Certainly, unhealthy relationships do exist that reinforce people's addictions and unhealthy patterns of behavior. That's not what we're talking about here. It is wholly natural, normal, and necessary for human beings to depend on one another. Wholesome codependence is part of loving relationships between spouses, parents, and children and close friends.
Living in a Human Community
Human beings are innately social animals. It is natural for people to live in community with one another---rather than merely in proximity to one another. Living in community means acknowledging our innate interdependence and accepting a level of mutual responsibility for one another. The most concrete example of this fact is the government's pledge to care for its citizens with Social Security. But the principle of shared responsibility is evident in a thousand expectations and norms of behavior not only within the body politic, but also in the civic communities of towns and neighborhoods and in workplaces, social clubs, and congregations. It is a mark of a healthy community that members care for one another during periods of stress and need, and can be counted on to do so.
In part, society discharges its collective responsibility to its members who are ill by training and paying professional caregivers---doctors, nurses, social workers, therapists, and aides. But all of us retain some direct responsibilities as well. In our daily lives, this may mean simply checking in with a person who we see regularly in our apartment building, neighborhood, office, congregation, or corner store, and who we notice is getting weaker with each passing day. If it is a sibling, parent, or close friend who is seriously ill, fulfilling our responsibilities may well require juggling other responsibilities and schedules and showing up for however long and however often we're needed.
There is another, equally important aspect to mutual responsibility. Allowing others to support and care for us when we're ill is also essential to the well-being of our communities. Indeed, refusing to be cared for erodes the living bonds that form a community. A person who is ill (physically or with an emotional illness like depression) and isolates himself because he doesn't want to bother his family and friends is destined to wind up in dire straits that could have been prevented. How will your family feel when they find you on the floor of your home, or when they find out that you died alone and in pain? You will not have saved them distress. The truth is we already are a burden to our family and friends. There is no way to avoid it---and it would be unhealthy to try. The best we can do is to minimize the burden we are to others. Being as cooperative as possible when it is our turn to receive care is the responsible, socially correct, and healthy thing to do.
Burden and Value of Caregiving
Caregiving is a burden and can exact a costly toll, but it also fills an intrinsic need that people feel to love and care for one another. Just as we would be less human if we didn't reflexively respond to an infant in need, we would also be less than who we are if we neglected a dying mother, father, sister, brother, or close friend. I'm not saying this to lay a trip on family members; I'm saying it because it's true. If you are ill and feeling awful because you're a burden to your family, consider this: In important ways, they need to care for you.
As hard as it is to accept, if you have been stricken with a debilitating illness or injury, please let yourself be the designated "ill person" in your family or network of friends. Your role is to be cared for. If people ask to care for you, PLEASE LET THEM! The truth is that your family and friends have more at stake in this than you do.
We are all going to die. Accept this lesson from people who have gone before you: When it's your turn, forgive yourself your own mortality. When you are sick or needy in some way, let those around you in. When you fail to do this, you increase the burden on the people closest to you who are going to have to live with the consequences of your refusal, reluctance, or unwillingness to be cared for the rest of their lives. If you want to take good care of them, let them take good care of you! [87-95]