“I haven’t called you, because I just don’t know what to say.” My (former) husband had finally caught up with his relative, who admitted that he had been avoiding calls and requests for support. “I have never been in your situation. Your wife is dying. I don’t know what that’s like, so how could I know how to help you?” the young person asked.
I had just been diagnosed with a terminal condition, and I was quickly learning how challenging it was to find people who could help me. Not with medical assistance, although that was challenging as well. What I struggled to find was someone to help me do this thing, to help me learn how to be with my dying, how to be dying.
Seventeen years later, I still have not found a large number of people who are able to do that, but I have found a few. And on this quest I have amassed a whole lot of wisdom and guidance about how to support the dying.
The Rule of Thirds
Grief expert Alan Wolfelt contends that when we are grieving, the people around us can be clustered into three different categories, according to how they approach us:
- Some will offer absolutely unhelpful, sometimes even harmful, “support”
- Some will disappear
- Some will be present to us and with us
I have found exactly the same thing with people surrounding terminally ill patients. This isn’t surprising, because dying is, of course, a time of great grief; and much of the experiences we have when grieving a great loss in our own life are similar to those we have when grieving the loss of our own life.
Some friends and loved ones can show up fully there and support their loved one in whatever ways are needed. Some cannot be found. And the rest try to help but actually may make the situation less comfortable.
When I was recovering from my first open heart surgery, a friend from church was beginning chemotherapy for her newly diagnosed breast cancer. We had much in common: toddler sons, serious medical conditions, and lots of odd encounters with people who attempted to be helpful.
We began to collect all the awkward conversations, each of the seemingly kind but actually hurtful comments. We had plans to someday compile them into a book.
It would include the remarks that related her cancer to a shortened period of breast-feeding or my heart condition to an inability to forgive people in my life.
Also in the book would be compiled doctors’ curt assessments, fueled by too many statistics and a paucity of compassion.
The thoughtless, tired old adages would be there too: God only gives you what you can handle. You must be really strong in order for the universe to send you this challenge. At least you got to have a baby before you got sick.
We eventually realized that that book would be way too dark for us to ever write. We also knew that anyone in our condition had experienced just as many awkward conversations and hurtful comments.
And, besides, it actually wasn’t those sharp, barbed phrases that hurt me the most. In fact, they made decisions very easy for me; when someone began to talk about my illness – or anyone else’s – in such a manner, I would just chuckle internally, amazed at their cluelessness, and focus on others around me who did not say those types of things. And, in times of great compassion, I had empathy for them; their ideas about loss, their fear of entering into that wilderness I now inhabited, I knew would someday bring them great difficulties.
For me, it’s that second group of Wolfelt’s categorization that has caused the most harm.
I’m not just talking about those who physically ignore me and my condition – the people who stop calling when I become ill, the friends who promise to visit but never do, the well-meaning but unsure ones who mumble, “Let me know if you need anything” as they back quickly away from me. I have gotten used to that.
What I still struggle with is feeling invisible, sometimes even around people who are close to me.
I have been in hundreds of hospital rooms and nursing homes where the visitors talk to one another but not to the person they are visiting. It feels as though they want to pretend that their loved one is not sick or dying, so they continue with their conversations next to the bedside, often leaving that person out of the conversation entirely. Sometimes they bombard the sick with never-ending tales of their own life, never pausing long enough for the person they are visiting to actually speak. I understand why we behave that way. We are uncomfortable around illness (and certainly around death), so we try to distract ourselves with chatter.
But every time we do that we miss an opportunity to actually be with the person we are with; and we do that to our detriment as much as, if not more than, to theirs.
Wolfelt calls his categorization of support people “The Rule of Thirds”, because he finds that the groups of “supporters” fall into thirds. I am not sure if he actually means that statistically in terms of grief support.
That’s not my experience at all with the dying. I think that that last group – the ones who can be present to us and with us – often contains a very small number.
This perhaps is not surprising. It isn’t something we were taught about as children. We didn’t have classes on how to help our friends who are sad, although that surely would be a wonderful component to any education.
And it used to be. Every single wisdom tradition, every religion ritualizes this support in order to instruct us on how to be the most loving and helpful to those who are dying. And the guidance is very simple – and sometimes very challenging to follow.
My friend Rabbi Joe recently taught me something very important about the Jewish tradition of sitting shiva. I have studied this rite of mourning for years and have participated in it a few times; yet I have not witnessed one of the oldest and most sacred traditions within this rite, and it has to do with those supporting the bereaved.
Beginning on the day of the funeral and lasting for seven days, those closest to the deceased gather together in a home, usually that of the person who has died, and for seven days they sit and pray together. Others come to support them, bringing food and comfort.
Traditionally, those sitting shiva sit on chairs low to the ground to signify the downward pull of their bereaved state and to reinforce their humanity (even our word “human” is derived from the Latin word humus, meaning earth; there is a similar etymological connection between the words for “human” and “earth” in Hebrew). But here’s what Rabbi Joe shared with me, which I find so beautiful: those who come to support the bereaved should sit on the floor near them. They do this to show solidarity, to physically indicate, “I am here with you, and I will stay with you wherever you are in this journey.” There is no attempt to pull people up from that place low to the ground or to remind them to look upward toward the heavens. There is simply companionship where they are.
This is exactly what the dying need to experience as well. It may not be physically possible to sit on the floor, but where and how we sit when spending time with the dying is vitally important. Already, most of us who are dying are in physical positions that reflect our vulnerability and weakness. Don’t stand above us and talk down to us, please. Don’t sit too far away from us, signifying the chasm between your situation and ours. Come close. And just sit.
Another traditional aspect of supporting those sitting shiva that can be used in supporting the dying is to refrain from speaking. When entering the place where the bereaved are sitting and praying, we are advised to not speak. We speak only after the bereaved has spoken.
There are many beautiful gifts that arise from this prescribed silence. We avoid saying the often thoughtless things that first arise in our minds in times like this. Conversations about ourselves and the external world cannot serve to distract us from the sacred space the bereaved inhabit. And we have the opportunity to wait and see what they would like to say – if they would like to say anything at all. This millennia-old tradition is structured to assist the bereaved as they navigate this liminal state of early grief. By remaining quiet until they speak, we can learn what that state is like for them in every single moment. We focus our attention on just being there for them, not on mindless chatter.
With the dying, this is imperative as well. If we refrain from the stories, the banter, the jokes with the nurses, we can better tune into the person we are there to see. Sit, be quiet, look into our eyes, hold our hand. Breathe deeply. Do not try to change the state that we are in, to “cheer us up” or to help us “face reality” about our condition.
And what you find may be that we do want to hear your stories, we may want to laugh at your jokes, we may like to be cheered up or helped to understand our situation. But we may not.
At times when I am in that hospital bed, I relish the tales of my children’s athletic events and homework, my husband’s work, cultural or political events beyond my sterile room. And at other times, I find such things distract me from really deep places that where I am drawn, places of quiet contemplation and prayer.
The only way to know what our loved ones need is to be quiet and pay attention. And if we feel compelled to speak, we can first ask if that is welcome (“I heard a funny joke, can I share it with you?” or “Would it feel good to listen to a story right now?”). But we do well to be mindful of the urge within us to talk in this way. Are we trying to avoid venturing to the wild landscape where that person now lives?
If so, let us be quiet.
There have been a few times when people have broken their silence with me in ways that were absolutely perfect. Once, a relative asked me gently, “Are you afraid?” Others in the room gasped, worried that she had given voice to something everyone was afraid to discuss. But I felt such relief to hear this question. It let me know that she was trying to be with me where I was. In that moment, I felt entirely seen and supported.
The Wild Landscape of Dying
The biggest barrier we have to actually following through in these two very simple instructions (Sit, Be Quiet) when we are with the dying is that we have not learned to venture into these scary places ourselves. It is absolutely essential that we explore our own relationship with death at every opportunity if we want to be present for, to, and with our loved ones who are dying.
My relative who avoided calls because he felt he had nothing to give due to his lack of experience? He had not dared to contemplate how my husband or I might be feeling. That was too frightening, so he avoided it altogether. And the relative who asked about my fear, the one who allowed herself to actually be pulled into my experience, had begun to imagine what that may be like for her. Each of us can do this. We have the capacity to feel empathy for others who are having much different situations than our own; we need only to open our hearts and minds a little bit and be willing to walk their path – purely in our imaginations.
Death is a wild landscape with ever-changing features. No two journeys into that realm are alike; yet many of us do seem to visit similar features in that landscape. Our individual and collective constructions of death and dying help form our approach to this landscape. So many of us try to avoid death – even contemplating it – yet everyone eventually gets pulled into this wilderness. Although every living being will experience this wild place, each of us navigates our particular path through it all alone.
Over the past seventeen years, I have been through numerous hospice trainings – as a participant and as a presenter. And by far the best are those that require a great deal of work with death on all levels – not just mentally thinking about death, but emotionally confronting our fears and even physically attempting to place ourselves within similar circumstances to the dying.
Explore the wildness of death – in your mind, in your heart, in your culture’s construct, in your religion’s stories. Spend time. Walk with curiosity. Open to your longings, your fears, your questions, and your assumptions. Develop a relationship with death. Without venturing into this wild landscape ourselves, we are not able to follow those we love as they navigate their journey.
And they need us to follow. And we need to follow.
The Dying as Gurus
When we learn to sit and be quiet with the dying, to simply be present with them wherever they are, we are gifted with unparalleled opportunities.
In all wisdom traditions, it is customary for students to sit down at the feet of the teacher and just listen. When we learn to sit and be still with the dying, they become our gurus. They inhabit a liminal space; they zoom between time zones and can hold a lifetime in one glance. The wisdom they have to share often is incomparable to that found anywhere else. It may not come through words. It may be communicated through glances or even just a feeling we get when in their presence.
And when we learn to sit and be quiet with our dying gurus, we find that they are supporting us just as much as we are supporting them.