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October 24, 2011

Why Don't People With Cancer Just Tell Us What Helps And Hurts?
Lori Hope


In deciding how to act or what to say to the ill, infirm or suffering, we rely on advice or examples presented by role models from childhood on. Real-life people and events, fairy tales and stories, entertainment, and popular and news media show us what works and what fails, teaching right from wrong. The problem is, we do not live in a world of immutable right and wrong, black and white; rather, we make our way through a spectral universe broader and richer than most of us have the capacity, imagination, or patience to visualize. Age, diagnosis, prognosis, gender, and cultural background help determine reactions. What comforts one may crush another. Each person's psyche is unique as her fingernails.

In addition, people differ not only from one another, but within themselves, depending on the day -- especially days made significant by doctor appointments, anniversaries or special occasions -- or event he time of day. Plus cancer survivors may change drastically over time, through phases of diagnosis, treatment and beyond.

Finally in this death-and-illness-phobic, youth-and-beauty-adoring-culture, many of us live far from our aged kin and see them rarely, compared with earlier times when we lived with and cared for our elders, so we don't have daily role models that our ancestors did. We don't have the opportunity to learn how to be care providers.

So what's the point? The point is to inspire you to imagine; to illustrate what may help or hurt; to provide a range of possibilities and contexts so that after considering your audience and taking focused time to think, you can determine what's most beneficial to the person you want more than anything to support. The purpose is not to dictate right or wrong, because what soothes one may scrape or stab another. The purpose is to provide general guidelines and principles of compassionate communication; to help you realize what comes out of your mouth is born in your history, and you can keep it there if your want. As the grandmother of etiquette, Emily Post, wrote almost a century ago, "Think before you speak--nearly all of the faults and mistakes in conversations are not caused by not thinking."

Thing about these questions before you speak: Do you want to ask someone with lung cancer whether they smoke because you smoked and fear you could get cancer? Are you compelled to tell someone with cancer that you know someone else with cancer who just died, because you're shocked and don't know what to else to say, or feel uncomfortable touching her hand and saying something simple like, "It's not fair"? Do you feel a blurt coming fast as a fart because you cannot stay in your own fear?

And before you act or neglect to act, ask yourself this: do you conveniently become to busy to call or visit because you fear facing a tragedy that could befall you or someone you love?

If you ask yourself those questions, you will surely find the words and actions to show how much you care.

Why should we have to guess what others want and need from us? Why don't they just assert themselves if we blurt something that upsets them, and ask us to zip it? If they don't want our advice, why don't they just say so?

Many people, whether they have cancer or not, fear hurting the offender, whom they assume meant no harm. Therapist and two-time breast cancer survivor Halina Irving, who has worked with survivors for decades, says cancer patients not only fear hurting others, they lack emotional strength because they are traumatized.

"All of this talk about patients being proactive, well that is well and good, but ask someone to be proactive at a time they are least able to be aggressive and assertive if very very difficult because we regress more to a state of dependency."

And in that state of dependency, we often fear that if we confront the offender, they may leave us forever.

If you remember just one idea from this book, I hope it will be to think about the person with cancer and what they may need, not what you need. It is not about saying what's wise, intelligent, or compassionate. It is about saying what the patient wants to hear and what will buoy hope. He, or she, not you, is facing the battle of a lifetime-- sometimes the battle for life itself. So when you are faced with the face of cancer, don't look away. Watch. Listen. Think. Comfort. Love. That is what will help your friend or loved one live.

From Help Me Live, Revised: 20 Things People with Cancer Want You to Know by Lori Hope



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