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Challenges in Grief

 

Telling it like it is

We have a training videotape from the Initiative for Pediatric Palliative Care that we use for discussion groups with healthcare staff. In the video entitled Knowing Who We Are, there is a family of a girl who experienced a lengthy treatment course for a brain tumor from which she eventually died. Mother, father and now young adult older sister talk of their experiences in the hospital and during treatment. At one point the father, a big guy with prematurely grey hair, is full of emotion as he states that he wished that someone (anyone?) during the time from diagnosis to his daughter's death would have come up to him and said, "This sucks." No one said anything like this, he explains, but if they would have, he would have appreciated it and they could have then had a conversation from that point—a place that felt real.

I was reminded of that videotape vignette when I recently called a friend whom I hadn't seen or talked to in months. It seems that while I was away dealing with my mother's end-stage cancer and subsequent death this summer, she was doing the same thing with her mother. Neither of us knew of the other's situation until someone shared with me that her mother had died. Reaching her on the phone, I commented that we were now in the same club. She apologized that she hadn't known and went on to say that "it's a pisser." I laughed and agreed. Amongst the casual and friendly commiserating, she had told it like it was and I felt more free to be honest. No doubt about it, it is a pisser and it sucks.

Those are uncomfortable words to type for me, however. They are not words that I use in conversation and they are the kind of words that I "encourage" our children to avoid. How strange that these impolite, push-the-envelope kinds of words are healing in some way. They tell it like it is-don't sugarcoat or spin while not going over the top for shock value. This kind of validation is healing as it's honest but it is also kind. We have all been victims of honesty of the unkind sort where someone is brutally frank in sharing their thoughts and assessments with the justification, "I'm just being honest" or "I'm just telling you the truth." Honest perhaps, but honesty without concern and compassion feels more like a weapon than a help. Honesty is important but please use with care.

When we are suffering with the burdens of grief or illness, disappointments or traumas, we need someone (anyone?) to be brave enough to be real in the description of how bad it is. Validation of this sort does not discourage but helps us know that we are not crazy and that the other person has a clue. It helps us not be so lonely.

My coworker and I recently met a mother in the hospital. Her baby had been very sick and is likely to be dealing with very serious problems for however long he lives. We talked about her baby, the news she'd been given, and the stresses of being a parent in this situation and we offered to keep up with her through our palliative care team. She was glad for the offer and expressed that it was good that she didn't have to be alone.

In Kitchen Table Wisdom, Rachel Naomi Remen writes of a counseling client who drove herself to the emergency room in severe pain and ended up staying there for hours by herself. When pressed for why she didn't call a friend or even Dr. Remen for support, the woman was defensive and said no one could have really done anything or understood. Remen responded that even children instinctively run to someone to kiss their "boo boos" and her client was dismissive as kissing "boo boos" didn't really lessen the pain. Remen agreed but said that the kissing is not really for the pain, it's for the loneliness (in the pain).

When one is grieving, we cannot take away their loss or source of pain. Telling it like it is-kind and honest validation-can be a welcome gift, nevertheless, and John Schneider writes that the difference between no one giving validation and one person giving validation is huge. No one giving validation is too sucky a pisser.

Grief as grievance

Several months ago we received an unusual call on our Center for Good Mourning line here at Arkansas Children's Hospital. Our administrative assistant answered the phone with "Center for Good Mourning" but the caller didn't quite understand and asked who this was. She explained that we did bereavement counseling and if you are grieving, this is the department you are looking for. The caller was the father of a child seen at our hospital and he began expressing his concerns until it became apparent that he thought we did "grievance counseling" rather than grief counseling. Our administrative assistant was able to sort this out and connect the father to the appropriate person and we were left pondering the confusion of grievance and grieving.

As we think about it, perhaps it should not be surprising that grievance and grieving would be confused. Loss comes and we look for the right place to file our grievance because the situation is not acceptable and someone needs to hear about it and do something. It can seem that the only fairness in life is that life is unfair to all of us at some time or another, but even unfairness is not spread around equally (and fairly). Loss comes and we are not just sad, we are angry, fed up, put out, teed off, chapped and chafed and a whole host of other words not fit to print in such a space. Oh yes, we have grievances and questions and laments. Why would such a thing happen? He was far too young, she had so much left to give, we needed them and still need them. Feeling abandoned, betrayed and hurt, we have grievances a plenty and a need to have them heard. Life, the universe, God-isn't there somebody in charge? And if there is, then how does such a thing happen and isn't there someone else we could talk to? Someone who could reverse our loss and make things right?

Grief can be so much like grievance or maybe all grievance has elements of loss and grief. We know what good service looks like, how we want life to be, how life ought to be and yet we know all too well that our dreams of life and the realities of life are not the same. We want to know why this is and people have wrestled with this question for as long as we know. Not only why is there loss and death in the world but why is there this particular loss or death in my life? Big questions but also a very personal and intimate questions. Some find answers that comfort, glimpses of understanding and insight upon which to cling. Many do not and are challenged to live with the mystery of it all-losses too many or too deep to be answered. If there is a grievance department in the next life, the line will be long and be prepared to take a number (a big number) and wait a while. We won't be alone.

In the meantime (and sometimes it can feel "mean"), we are left with the need for those who can hear our grievances without flinching or withdrawal. Those who can provide a receiving space for our lament. Our faith traditions and practices can often provide that space in powerful ways and this is a blessing. There are friends, family and those who feel like family who also provide this kind of space, this space of blessing. When it can't be fixed, we need a witness for our pain and an ear for our complaint. A grievance department. Applicants always welcome and needed.

Going through the motions

Working in a residential program for teenage boys with emotional and behavioral problems years ago, the term "front" was used to refer to putting forward an undesirable false image, as in "he's just putting on a front." As staff we would often confront "fronting" to instead encourage the boys to be real and honest-with others and themselves-about how they felt and what they thought. There were times, however, when a boy wanted to act more positively but just didn't feel more positive on the inside. In these cases, the discussion would sometimes turn to encouraging fronting-acting like you know you should even if it feels false--with the belief that eventually the positive behavior would work its way inside. Change from the outside in rather than the inside out and sometimes it seemed to work.

Fronting is one way to put it. Sometimes it's "fake it 'til you make it," and other times it's "going through the motions"; going through the motions without requiring the corresponding emotions. This is how it is for many of us in grief. We know what we need to do and often what we have to do. We have enough insight to know what actions and behaviors are required, and we may be able to do them. Just don't ask for more than this because our heart, our whole heart, just isn't in it. It's not there to give. We feel empty and fatigued. Apathy nibbles around the edges and sometimes makes forays into the center. We get to those places where in the past we would reach back for that little something extra to pull us through or push us further…but it's not there, that reserve is missing. It's a slog, it's just gutting it out. It's hard to live like this, going through the motions, but sometimes it's all we have. Faking it in hopes of making it may be the best we can do.

But it's something. It's not nothing - it's too hard to be that. After a great loss when we are deep in grief with no end in sight, it's a start. Going through the motions, perhaps not even half-hearted, takes us somewhere where we weren't before, somewhere past square one. We're beginning again even as the steps are small and slow. It's no way to live in the long-run, but we're not talking about the long-run when we begin going through the motions of life again. We're only talking about getting through the day, or the morning, or the hour or the minute. What's minimally required of me? OK, I will do that but nothing more - I don't have any more to give. Not now, not today.

"Burned out" is a term that seems to fit this experience and it's a good and descriptive term. The passion has gone away, the fuel is spent, and the light which once burned brightly has flickered, dimmed and disappeared. It's been beaten out of us and we are toast (burned toast, of course). Put a fork in us because we're done. Numbness is present to help protect us from the worst of the pain. In the big picture, we burn out and get to a place of going through the motions because we cared enough to feel loss deeply and painfully. In her book Kitchen Table Wisdom, Rachel Naomi Remen writes, "Yet people who really don't care are rarely vulnerable to burnout. Psychopaths don't burn out. There are no burned out tyrants or dictators. Only people who do care can get to the place of numbness. We burn out not because we don't care but because we don't grieve."

So we fake it and front and go through the motions with the hope, often unsaid and sometimes unrecognized, that someday it will be different, we will feel more and our exterior presentation will be a greater and more real expression of our interior reality. There is that risk of going through motions which only take us in circles going nowhere but what we're after is something different. We want the faking to eventually lead to the making, the motions to reconnect to the emotions and the front to look and feel the same as the back and the middle. It can happen. It may take a long time and until that time comes when we find pieces of ourselves resurfacing from their inner refuges, please handle us, and may we handle ourselves, with kindness and with care.

Being "strong"

We've all heard it said after someone has died and perhaps we have said it ourselves-"I need to be strong" or "I've got to stay strong for (fill in the blank)." Sometimes it's even offered as guidance for our grief experience-"Stay strong" or "You've got to be strong." What do we mean by "strong" in these circumstances?

There is a kind of strength which helps us go on in spite of pain, fear and grief. It is a resiliency which pushes or pulls (take your pick) us forward, not allowing us to feel the hugeness of the situation and forcing us to focus on the tasks at hand. There are times when this kind of strength is useful and may be the only kind of strength we can find. Being "strong" suggests the need for external protection from the hurts of life-a wall, a suit of armor, a padded suit-something to keep us from experiencing the pains of life because otherwise it would hurt too much and we might be less useful and in control. This kind of strong comes with a high price. Maintaining this kind of strength protects me from my feelings and dulls my sensitivity to others. To be sensitive to you, I need empathy for what it is like to be you. To experience empathy, I need to be able to imagine what it would like to be you and this means opening up my feeling and creative self. It is hard to do this empathic work of imagination when to do so calls me to a place that I have made it a "strong" point to avoid. Being stuck in the "be strong" mode keeps me from feeling deeply and sensitively for others-if I have an armored glove on my hand, I can't tell how hard I squeeze your hand or whether or not your forehead is feverish. To be that sensitive, I would have to quit being so strong and risk taking off the glove.

There is another kind of strength which seems deeper and wiser than this Teflon armor model of strength in which painful feelings and thoughts just roll off as we act as if pain and worries don't matter. This strength is an internal rather than an external strength. We could compare it to our bodies whose hard parts are generally on the inside holding us up rather than on the outside keeping the world out. Our protective covering, our skin, is remarkably flexible and sensitive. Our muscles can contract or relax depending on the need at hand. If there is work to do, we become firmer as we flex our muscles to do hard work and heavy lifting. When the situation calls for it, we can relax our muscles and be tender-feeling another's pulse and the warmth of another's skin. All the while, our strongest or hardest parts of us are on the inside supporting us in whatever the situation may be. This kind of strength tells us that we can feel and experience the world and not be blown away because our strength and stability is on the inside.

What if we learned to be strong from the inside out rather than from the outside in? What if we taught our children that one could feel emotion-even cry-and still be OK and still be strong-strong enough to feel and not immediately put up the defenses? It would be a different world. A kinder, gentler and stronger world.

Choosing our hurts

Some of us remain kids at heart. We like picture books, still enjoy cartoons, watch comic-book movies and read young adult fiction. A recent young adult novel that I was drawn to was The Fault in Our Stars which came out as a movie this summer. It was the latest book written by John Green who is somewhat of a Renaissance man as he writes witty and insightful young adult fiction and posts witty and insightful "crash course" history videos on YouTube. His fiction is mostly realistic and deals with weighty themes including suicide, depression, diversity, and now with The Fault in Our Stars, cancer and death. All along the way he maintains (at least for me) an amazing balance of seriously dealing with life, death and purpose issues (the insightful part) while being seriously funny (the witty part). In doing so he has earned millions of both young adult and used-to-be young adult fans. As one who worked for ten years in the pediatric cancer world (as a social worker), I was especially interested in Green's take on that world and its inhabitants. While his teenage characters were more clever and quotable than most teenagers that I have known when I was one and since, I found the story wise, compelling, humorous and heartbreaking, both in its book and movie forms.

There are times and places in stories where we are presented with an image or insight which resonates so strongly that it makes the whole story worth the price of admission. There were several times and places like that in The Fault in Our Stars, but one stood out for me. At a later point in the book (won't give too much away and discourage you from reading the book), one character writes another character with these words: "You don't get to choose if you get hurt in this world…but you do have some say in who hurts you."

It is an important truth that we don't get to choose whether or not we hurt in life. As was stated by the Man in Black in The Princess Bride, another witty and insight book/movie combination: "Life is pain, Highness. Anyone who says differently is selling something." While there is more to life than described by the Man in Black, pain is an unavoidable part of the human experience. And while there are different varieties of pain, loss is the common denominator. Annie Dillard writes of "the losses you incur by being here—the extraordinary rent you have to pay as long as you stay."

So we are helpless to avoid pain but we do have some say. We are not totally helpless and there are choices as to the circumstances of our pain. No doubt it boggles our minds at times that some have so much loss (and pain) in their lives that was not of their own choosing, such as teenagers with cancer, and we wonder about why that may be. Whatever our "big picture" viewpoints, Green's cancer-victimized young adults remind each other that "life is not a wish-granting organization" as they know better than many. But amidst the unavoidable pains, there are pains of our own choosing. This is especially true as we age. We get no choice as to the families into which we are born, but the older we get, and this gets raised to a higher power in adolescence, the more we get a vote on who will be our surrogate families with whom will we spend our time, share our lives, give and receive loyalty, care and love. These choices determine potentials and eventual realities of our pains.

Hazel Grace is the main character in The Fault in Our Stars. She has an incurable form of cancer and struggles with being "a bomb"—one that will one day explode into shards of acute pain striking all those close to her. It's a burdensome reality that is brought to the surface for Hazel by her cancer but is not unique; it is rather part of the human condition. We are all bombs, putting those we love at risk and being vulnerable to the inevitable explosions of those we love. How can it be otherwise unless we foolishly choose the pain of lifelong isolation and loneliness rather than risk losses in relationships?

Living open to loss, to pain, to bombs is not a simple or one-time choice. We make choices over and over again with each new person in our lives. We even make choices with those already in our lives. How do we relate to our parents as we all mature and age? How hard do we work to stay close to our spouses and partners? When our children suffer, how do we avoid being overwhelmed by or running away from them and their suffering? Choices all along the way.

In the end, having some say about who hurts us can be empowering. We need not be helpless victims in life and loss. Our choices about who can hurt us and by how much can enrich our lives.

One last movie quote, and it comes from Shadowlands which tells the love story of C.S. Lewis and his wife, Joy, who died from cancer shortly after they married (and they married knowing she would die from her cancer). Some time after Joy's death, Lewis makes the following statement: "Why love, if losing hurts so much? I have no answers anymore: only the life I have lived. Twice in that life I've been given the choice: as a boy and as a man. The boy chose safety, the man chooses suffering. The pain now is part of the happiness then. That's the deal."

I think John Green's characters would agree.

Sigh

Years ago, I took a course about leading adult grief support groups. In the handouts was a list of ways that grief is expressed emotionally, cognitively, physically, etc. In the list for physical aspects of grief, "sighing" was listed, and it stood out to me as, at that time, I would not have thought of increased "sighing" as part of our natural grieving response. In the past month or so since my dad's unexpected hospitalization and death, I will vouch for sighing as part of grief. It has become one of my body's favorite pastimes.

Sigh

What is this all about-this sighing as part of grief? We sigh for lots of different reasons and in many different situations. There is the contented sigh at the end of the day or when relaxing. The "life is good" sigh. There is the sigh of relief that can come in a few varieties such as "thank goodness that is over" and "thank goodness that (bad thing) didn't happen." There is also the sigh that comes with disappointment, frustration or exasperation. The kind of situation where in emails we may actually write, "Heavy sigh," in response to a particular or general wrongness in the world. Connected to this kind of sigh is the sigh of resignation-this is all there is, the best we're gonna get, no need asking for more as no more will be provided. Submissive to the realities present, subdued, resigned, beaten. Sighs of sadness, of sorrow, sighs "too deep for words."

Sigh

There is a part of us that resists in life. When trials come, when we are challenged or when something or someone valuable to us is threatened, we resist. We push back and fight. We're not going gentle into that good night, we're not going down without swinging, we have not yet begun to fight. This fight response is often a good one and we need it. It's adaptive and helps us to not just survive a crisis but perhaps even thrive afterwards. Advice sometimes given to people with cancer is to not let the cancer take anything that it doesn't have to take-don't give it one thing more, unless you choose to let go of something that in the end is not worth the effort. Resistance is, thankfully, everywhere, for without it there would be more pain and suffering in the world and these are already in plenteous supply. Resistance is needed and many, if not most, times adaptive. But what about when resistance is futile?

Sigh

We've all been there and we will be there again. No one gets out of life alive despite our prayers and protests. Death can be delayed but ultimately not avoided, not on this side of the veil, at least. We get that in concept and then we have to also get that in practice.

Sigh

There is a point to protest, pushback and resistance. Without it, we don't know our limits and we may live an unnecessarily small life when there is potential for more, sometimes much more. Yet some realities are just that, all too real and not in the change category, and with only so much energy at our disposal to go around, there are some fights that do us no good in the end. Singer/songwriter Lucinda Williams has a whole song devoted to the idea, "It's over, but I can't let it go." Part of us knows that it's over, and that part of us sighs. And then we realize it again.

Sigh

And if we ever start to forget it…or doubt…or wish…

Sigh

Sighing has been recently studied, and the idea found is that sighing works as a reset to our respiration. Sighing keeps us from getting stuck in a fixed pattern of breathing. It makes us, in an unexpected, perhaps paradoxical way, feel better.

Sigh

Perhaps this is true. Doesn't matter in some way because the body has its own wisdom and a mind, so to speak, of its own. We grieve and we sigh. We hope for more, wish for better, settle for what we have…and sigh. Sighing is part of getting used to what we'd rather not. Part of the wisdom of accepting what we can't change. Part of living into a new world not of our own choosing. Part of life, especially in grief world.

Heavy, heavy sigh.

Seeking mature and wisdomy

Years ago in the spring I was spending the night in the hospital with my then fifteen-year-old son who had just been diagnosed with Type 1 diabetes. Fatigue, weight loss and throwing up had taken us to the doctor on a Monday and from there to the emergency room and into the hospital and an intermediate care room. Between Monday and Friday my son received IV fluids, food and insulin while he and the rest of the family received a crash course in diabetes care. Late one night after everyone else had left and the movie we were watching was over, he asked me how I felt about the whole thing. When I returned the question to him, he replied that sometimes he felt "all mature and wisdomy" and sometimes it was "this sucks." Not for the first or the last time, I was very impressed.

"Mature and wisdomy" and "this sucks." What a fitting description of the package deal that is our lives. Not just one thing or the other but a complicated mixture. Not so many generations ago, his condition would have led to an early death. Today diabetes is a chronic, incurable but manageable condition. Annoying and high-maintenance, but not a tragedy in the big picture. Annoying and high-maintenance is the sucky part. No day will ever go by, no meal, snack or drink, where the reality of this new world and condition will not be a present fixture, consideration and burden. Life can be good, of course, but the recipe for its goodness will always now necessarily contain calculations of carbohydrates and administration of insulin. Loss of the old life, adjustment to the new.

There are days when life changes in significant ways. Turning point days. Sometimes we see them coming like graduations, weddings, first and last days on the job. Test results days can be turning point days, too. Whatever the results of the tests, we know we stand at the fork in the road looking at the possible paths ahead and waiting for the guidance that the test results will bring. And then there are those days that we never saw coming where we end up in the emergency room, on the side of the road or at the end of a phone call where life has been changed forever. Something about what we had has been lost and we have been yanked into a new reality, a new dimension of living. No choice about it despite our protests, understandable denial or sulkiness. Grief is there as loss can't and won't go anywhere without it, and while we adjust to the new world, we do well to give grief its due right of way and attention. To do otherwise, frankly, is not much the option because grief won't just go away if ignored. Annoying, frustrating, or grossly unjust, change means loss, loss means grief, and grief means grieving. That is the "this sucks" part.

But what of "mature and wisdomy?" Where do they come in? While part of ourselves is understandably living in pain and protest world, there are other parts of us. These parts see a different truth. Loss is not the whole picture despite its common deception that it is. There is more to the situation if we can back up far enough to see it. Much may be lost, but not all. That which is left has value still, even more value than can be measured. In the novel, The Fault is in Our Stars, author John Green suggests the idea that some infinities are larger than other infinities (book is highly recommended). Life before loss had infinite value. Life after loss also has infinite value although the loss was substantial and real. One infinity may be smaller but still infinite. Our mature and wisdomy selves can see this or at least have a significant glimpse and this is important. This truth does not negate the loss and its pain but is no less true. Life is still this package deal whether or not we see it, and we need this perspective from our mature and wisdomy selves.

One way we get into trouble when losses come our way in these turning point experiences is that we are tempted to see such experiences in either/or fashion. Either they are all bad-loss, pain and injustice-or they are all good and the loss doesn't matter-only the potential gifts within the loss, underneath the wrapping of the pain, matter. Why must it be all one or the other? Is life really so simple? Loss and its griefs are real as are love and the relentless nature of life, all infinitely true. Sometimes what happens in life does "suck" but our mature and wisdomy selves understand that life's suckiness is not all there is to it and certainly does not deserve the last word on the matter.

After our hospital admission on Monday and days of stabilization and education, we were discharged home on Friday. In a move to a new normal, we decided to eat dinner at a local Mexican restaurant. After dinner, my son and his driver's permit got in the car to drive us home. He put on some new sunglasses, turned on the CD player, buckled in and said something along the lines of "Well, I'm driving the black Honda, got my new shades, got Keb Mo on the stereo…and I've got diabetes." Mature, wisdomy and sucky. Package deal.