Friday, February 24, 2012

I’m Sorry You’re Dying- Balancing Schadenfreude and Denial

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I just finished participating in a workshop: DEALING WITH CHRONIC AND TERMINAL ILLNESS WITH KINDNESS AND CARE. Strangely, my presentation was inspired by a little boy in my life. Out of the mouths of babes, and all that.

About two months ago my friend Roxanne’s son, who is 7, overheard a conversation between his mother and me. In retrospect, this little boy considers me to be an aunt, or perhaps secondary godmother. That I am his mom’s best friend translates this way; that I am unabashedly in love with him and his siblings is obvious, reciprocated, and joyous. So I was sorry to know he overheard us talking about death and dying, and that it may have upset him. But I was deeply touched, and incredibly moved, by his response. It was this:

“I’m sorry you’re dying, Olie.”

He followed his comments with a hug. That was it. Having recently encountered some of the worst examples of reactions, it blew me away to see perfection in action. What adults struggle to master was embraced in simple honesty in a 7 year old boy’s pure, innocent, and immaculate reaction. He got it exactly right without even thinking about it.

What often happens, at least among adults, is not quite as deft. Usually those of us living with terminal illnesses deal with reactions in three very clearly defined groups:

  1. DENIAL: Probably the most common. It can manifest as pollyanna refusal, which generally involves negating comments like “you’ll be just fine, I know it!” This makes the commenter feel better, but also dismisses the struggle entirely. It may appear supportive, but is actually the opposite. Also common is a total rejection of the person. Many people with serious illnesses are shocked to find that people they like, love, and even depend on can’t face the possibility of death or are terrified by illnesses associated with death. Cancer patients can be crushed to discover that an old and dear friend stops taking calls. It has nearly nothing to do with the sick person. The friend simply can’t deal with his or her own fear of death, and runs. This is also very hurtful, but it’s important to remember that the reaction has to to with the reactor.
  2. SCHADENFRUEDE: Almost the opposite of denial, the schadenfreude club is an arm of the “professional mourners” brigade. We all know these folks—they absolutely revel in the misery of others and wouldn’t miss a funeral for anything but their own death. These are the people who call immediately, can’t offer to do enough, and want to talk about death and dying and misery constantly. They may, at first, appear to be helpful. Often these people are hypochondriacs or overtly neurotic themselves, and attach to others who are ill or dying in order to milk the misery for attention and melodrama. Ironically, they are not helpful. One way to identify a misery addict from a genuinely helpful soul is precisely that: the schadenfreude crew crowds every sick room and funeral parlor, can’t be front and center enough, but does absolutely nothing to help. He or she is in the way, wringing hands, moaning and crying, and often has only a casual acquaintance with the party in question.
  3. THE REST: Hopefully-- and most likely statistically, though no data that I know of exists—the majority inhabits this group. Though most of our friends and loved ones WANT to be supportive and loving, most of them don’t necessarily know how. Those who do—who may have lost a loved one and know how to react—often step up first. Women who cook, clean, and offer to carpool when a neighbor is dealing with chemotherapy, men who do yard work for a friend who is losing a parent, the doers in our lives who seem to be there the instant we need them without requiring a single response—these are the best gifts we can receive. Family and friends may struggle; they may not respond as we want them to, but they care. Most want to help, but very often don’t have words or a blueprint for such a difficult and challenging issue.

When I sat in this seminar—attended mostly by terminally ill patients and their relatives—what most people wanted, and could not seem to find, was a plan of response. Don’t we all, really? Even the well-meaning deniers and grief-addicts are, mostly, only doing what they feel is best. So what IS best? Here are a few things that seemed to be helpful to others, and have been to me on many occasions:

  1. ASK: Initially many people who are ill—whether terminal or not—don’t have any more of an idea about what to expect than you do. So give your friend a bit of time, and then check back. By week two of chemo or radiation he or she may be ready to accept help they initially refused. Most of us don’t know how tiring treatments are going to be, or how many people we ASSUMED would help don’t or won’t. Your friend is in a tail-spin. Let the spinning slow, then call.
  2. DON’T ASK- JUST DO: In some cases a person in need has no idea how to ask for help, or simply comes from a background that teaches this is a weakness. If you know him or her well, consider simply doing what you can see needs to be done. This is best with tasks that are non-intrusive, since many times a sick or dying person doesn’t want to feel either obligated to be a “host,” or even have to deal with the world at all. Mow the lawn without asking for permission. If he or she has a family, drop off food and leave with a wave and a promise to pray. You just lightened the load without requiring anything in return.
  3. CONSIDER THE COLLATERAL ISSUES: Of course you want to help the friend, but is he a dad/ is she a mom? Spouses, kids, aging parents, pets… all of them are going to need things that our sick friend can’t be expected to do. The relief a sick person feels when he or she knows the kids are being picked up, can stay for dinner, and have a break from the sadness or pressure at home is immeasurable. Taking the dog to the groom, giving the spouse a break with menial stuff, or making sure an aging parent has a ride to a doctor’s appointment makes a HUGE difference to people who are struggling with their own issues.
  4. DON’T FORCE IT, AND BE READY FOR AN ABOUT-FACE: It may hurt when your offer to help is initially rejected. It may even be rejected repeatedly. Back off, give it time, and simply let your friend know the offer stands. Check in, LISTEN, and keep an open heart. Remember #1 and try to be ready to accept a change in attitude or need. Asking for help is hard; knowing what help will be needed is nearly impossible; and asking or accepting help after rejecting it is humiliating, even though it shouldn’t be.
  5. KEEP PLATITUDES TO YOURSELF: Offer prayer, offer to listen, offer whatever your heart feels right offering. But don’t assume anyone shares your spiritual beliefs, and don’t force them on someone. Don’t dismiss the struggle/journey. Don’t push. Be a good listener.
  6. GIVE YOURSELF PERMISSION TO MESS UP: Your sick friend or relative may go through mean stages, cold stages, and outright offensive stages. You may do the wrong thing. Illness, pain, death—these are things nobody wants to deal with, but all of us will. They hit us at the very heart. Don’t beat yourself up if feelings are hurt, and try not to take it personally. We lash out when we are confused and scared. Forgive, let go, and try not to take things to heart. If you do something that, in retrospect, may not have been the best thing, forgive yourself, hope to do better, and don’t beat yourself up.
  7. KNOW THE FACTS: Terminal doesn’t mean tomorrow. Some patients (like me) may live for years with a terminal illness. Some may be chronic, but not terminal—even many cancers are now considered TREATABLE, though not CURABLE. This can lead to “sick-bed fatigue.” Many spouses, in fact, can be wonderful at the start, but after years of struggle, become overwhelmed and reject their loved one. Friends and loved ones may, initially, be helpful but grow weary. This is understandable, but very often ends in damage to relationships that can’t be healed. If you are genuinely close to the person, it may be a good idea to consult with physicians and counselors who can help you and the rest of the people around him or her understand the depth and breadth of the journey.

Special thanks to all of those who attended the workshop, DEALING WITH CHRONIC AND TERMINAL ILLNESS WITH KINDNESS AND CARE. You, your loved ones, and all of us living with the struggle are in my prayers—always.

5 comments ]:[ Add your comment:

Chrissy said...

Just a note: we sat the boy down and explained that I have time, love him, and other things. He asked questions and felt better by the end.

I don't want everyone to think we left him scared and upset. :)

angel said...

Chrissy....thank you. This is excellent post.

My husband just had a friend who died after about 7 months of prostrate cancer...when they caught it. I like how a specific group of friends handled it. He told them, they said, I'm so sorry, then proceeded to treat him as always, including him in their monthly respite to a local pub...and the last one or two, they had it very close to where he lived, so he could make it. They said goodbye, without actually saying the words. I met him twice between August-November...glad I could. If he wanted to talk about it, we did...if he didn't we didn't. (We being the whole group.)

I will be sharing this if you won't mind. Thanks again.

Chrissy said...

I'm sorry for your loss. It's great to know your friend had that kind of support!

Delia DeLeest said...

When I was a girl dealing with my mother's cancer, Denial was a river flowing right through the middle of our 3-bedroom ranch. Looking back, I find it interesting how shocked we were when she died, even after watching her be devoured by cancer for the preceding 5 years. Deep down, we figured it was going to happen, but didn't really want to think it would. Does that make sense? I wish things had been different for us both during her illness and after her death. But, it was rural Wisconsin in the 1980's, counseling (either professional or non) just wasn't done. We just pulled up our socks and went on with life. We survived, but there are scars.

Chrissy said...

So sorry for your loss, even after so long. How do we put the loss of a mom behind us?

Thanks for sharing that.

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