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

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.

The Washer Woman's Wings

The Washer Woman's Wings
Christine Olinger

Old washer woman
with your cloak about you
lifting in the wind
like wings-- dark wings,
do you kneel there,
in the clay
of my long lost loves
to remind me?

Counting out
your scraps and cloths
like beans,
counted nigh on
to thirteen.

Is it thirteen?

Your numbers
never frightened me,
nor joining them
if it comes to that.

Your numbers
never called me,
though I've
heard the song
til it sings along
the strings of my soul.

They can clamour
outside my window,
howl and rage
in the misty night.

Let them come.
Let them rage.
But oh, your rags--
dark, flapping wings--
your cloak
does look warm
on this chilly winter night.

The Journey Itself

As 2008 approaches, many are reflecting on the year that has passed and looking forward to a new one with fresh goals. I learned a great deal in 2007. One of the challenges for me in 2007 was keeping faith. In general I am not someone who loses belief in God or the gracious force that guides the universe. I do lose faith in people. I find myself becoming disillusioned, saddened, and even angered by others who waste opportunities, impair others who would do good works, or simply treat others with cruelty, malice, ignorance. For the most part I think we all try hard. But I see more people every day becoming self indulgent, excuse-mongering anger addicts.

Where, then, to look for guidance? This past year there were revelations about Mother Theresa of Calcutta and her loss of trust in God as her life came to a close. I was shocked to hear others discounting both her work and her spirit as a result of these revelations. For in spite of a darkening heart, one that found it increasingly hard to trust God's plan, she continued to her final breath to help others. She served humanity even in the throes of doubt.

Jesus questioned the plan, too. He wept tears of blood at Gethsemane and begged for a way out. He went willingly to his cross, but in agony asked "why have you forsaken me?" Perhaps those who worship him should consider that when condemning a little woman who did God's work even when she found it hard to hear God's voice. "I am just a little pencil in God's hand," she used to say. When her certainty of glory in the afterlife waned, her dedication to others did not.

I want to make that kind of determination my guide. I'm no Mother Theresa, nor would I want to be. But how can I fail to admire the strength it takes to plow onward through the hard times without really knowing if any reward awaits? Surely the journey itself, and whatever good I can do along that path, is worth its conclusion even if no reward awaits. As my dear friend Maria often says, "what if life itself is your reward?"

When you live with a terminal illness people tend to respond in one of two ways: denial on your behalf or fear and shock that such a thing can happen. The denial camp tends to respond with dismissal. "You'll be fine, they'll find a cure tomorrow," delivered in a saccharine voice followed by a fast change of subject. The message: it's too scary, so we're going to pretend it will go away and I am simply NOT going to think about nasty things. The fear/shock camp has a more natural response: holy crap how does somebody deal with THAT? From those people I often get offers of prayer (always deeply appreciated) and gentle questions. "How do you deal?"

I believe a power beyond us drives this universe. I believe in good and evil, but suspect we (humankind) drive most (if not all) of both forces. I believe in angels, in the power of releasing a light intent on good things into the world, and that the balance of endless chaos responds to darkness with light eventually. I believe in getting up and going on with an open heart. And I believe I can be wrong. But like another woman who was "just a pencil in God's hand" I believe the journey to be worthwhile regardless. So if I take a drive to visit a little shop at the end of a meandering country road lined with maples covered in snowy lace, it's cool if the store is closed when I arrive. Not everyone takes note of what rolls past as they move along the roads of their daily travels. For me the trees and rivers, incredible skies at dawn and dusk, and even the people I meet on the way are reward enough. Anything else is just icing on the cupcake.

A Star Danced

My very good friend, Sue, was a dancer and a teacher. She was incredibly gifted. When people speak of her they very often speak in terms of light. "She was a bright light in my day," they say. "She lit up the room when she walked in." There was "a sparkle to her, a twinkle in her eye," a joyous quality that eludes us without these references to sunshine and starlight. And often, in these recent days as I've talked to friends, the phrase is repeated: a light has gone out in the world. A bright light, people say with sadness, is extinguished, gone, forever lost to darkness.

Sue did sparkle, didn't she? It is the measure of our love for her and the force of her personality that this word is so strongly identified with a woman who seemed, over the years, to change very little. Her hair was always a cap of gleaming curls. Her skin scrubbed fresh and kissed with freckles. Her blue eyes always full of winking, shining merriment.

Where was this darkness that claimed her? How could we have missed it? How could anyone so bright, so full of laughter and good wishes for her world, be surrounded by something so insidious and harmful without warning signs, bells, whistles, glaring flashes of ominous danger?

None of us know. Perhaps Sandy, her love and dearest companion, has a greater sense of the quiet places in Sue that none of us knew. We will certainly need to be there for Sandy as she faces life in a dimmer place. We certainly owe her our gratitude for being the person who acknowledged Sue's darkness, embraced it, and loved it as part of the person we did not know as well as we thought. This is true love, the difficult kind, that loves not just the brilliant facets of a soul where candlelight glances over them, but loves the deep and nuanced shades, too. What a great comfort it is to know Sue had such a rich and precious gift in her time with us.

In these past weeks, long days filled with reflection since I heard of Sue's death, I've thought almost constantly of those bright words, those oft invoked images and phrases. I've thought about stars. Great, distant balls of riotous fire. Stars twinkle because the Earth's atmosphere causes refractions when the light passes through varying densities. Terribly scientific, but it's interesting... the starlight bends and scatters, so the star twinkles. Those dazzling bits of winking beauty we see each night are only visible because of the darkness. They are growing ever distant, hurtling away from their birthplace at astonishing speed.

Perhaps the metaphor, though we may not realize it, is more apt than we imagined. The darkness was always there, throwing Sue's sparkling magic into brilliant flashes for us to see. We focused on the light. It's human nature to do so. And like those stars rushing off to places none of us can imagine, beyond our sight, past the place where our small position in the greater scheme of all that flows outward from the first moment of creation, Sue is rushing off to someplace else. She didn't have an easy journey, this shimmering sister of ours. She left her home and had to find her own place in a world resistant to who she was, the essence of her spirit. So people saw her through the filter of their own experience, bent the light, scattered it, made it something they could accept as it rushed away from narrow gazes.

Sue and I used to absolutely wallow in good Shakespearean theater. Well, we wallowed in the bad stuff, too. If nothing else it made us laugh, and laughter so often seemed to be her default position. In those wonderful lines, timeless turns of phrase that move generations beyond the life of an Elizabethan poet and playwright, there are astonishing glimpses of truth. One of Sue's favorite plays is my own favorite as well. I find these lines keep running through my head. In Much Ado About Nothing, Don Pedro teases Beatrice, that most laughing and merry of ladies:

Don Pedro: Your silence most offends me, and to be merry best becomes you for out o' question you were born in a merry hour.

And she responds in a rare sober moment:

Beatrice: No, sure, my lord, my mother cried; but then there was a star danced, and under that was I born.

There's our Sue. Born into a world that didn't completely understand her. Some could never accept her. Orphaned by intolerance, Sue still managed to shine against the darkness, sparkle in spite of a journey that was, though we did not know it then, speeding her away from us in a stunning, silent rush. She touched us with her light. We were fascinated by her twinkle and shine. Sue was born into a place that had to bend her, tip her, reshape her to see her beauty. She came from a place of sadness, darkness, and rejection. But a star danced, and she was born.

Her light has not gone out. Never say so, friends. She's rushing, racing, flying onward past the farthest reaches of our vision, but her star is still dancing. Sue shines on, and always will, in a place none of us can follow for now. But we can watch the skies, and catch glimpses of her brilliance still lighting small parts of the sky.

I look to the skies for your light, Sue. I look to your example of brightness and joy, and I take comfort in the gleam of the stars that have called you, much too soon, home.