Flying Beyond Fear: Stories from the End Zone

Rev. Maj-Britt Johnson
Theme Talk, Suusi 2005

As Martha told you in her introduction, I worked for a hospice in New Jersey as a Spiritual Care and Bereavement Coordinator until this past January. When you are employed in the business of death and dying it is not always a happy moment when someone asks you the question: “what do you do?” especially at, say, a party. People’s faces fall, their shoulders slump. It’s like I’ve pulled the proverbial elephant out from under the rug and dumped it on their shoulders. Unless I am talking to someone who has had a hospice experience with someone in their family. Then we have stories to share, and it is as if we are family.

I must admit I was a bit uncertain how I was going to connect the theme “Time to Fly” to the subject of death. Then recently I flew on Independence Air. Has anyone here ever used them? They’re one of these new little airlines that’s trying to be hip and casual in their appearance, yet sophisticated and even ironic in their public relations materials. The desk attendants wear t shirts, the flight attendants serve Ginseng Ice tea, and they have this comedian named Dave on a voiceover tape to tell you the flight safety regulations they figure we’re sick of hearing by now.

He goes: “Hi, I’m Dave and I’m a government certified expert on flying. Not really. Well, anywhoooo.”

And like that. But what I heard, while in the midst of thinking about this talk was the following: Hi, I’m Dave and I’m a government certified expert on dying. Well not really. No one is. But anywhoooo.

I’m afraid it goes on. Let me point out the emergency exits first. You have 4 options for fleeing this earthcraft. Here’s a hint: take the one closest to you. Be sure to share with your life-mates which one you have chosen. Go ahead and give them a hearty hug or a handshake while you’re at it.

If you happen to be seated in a row that says emergency exit you have a responsibility to lead the way out. If you don’t feel up to it, say so now.
On this flight we may encounter turbulence and if you’ve ever been through turbulence you know it’s not a funny sight. Okay maybe it is a little funny.

Oxygen masks next. If it falls down in front of your face, put it on. It’s our little way of saying: you need it. Right now! Put it over your face and breathe normally. Yeah, right.

Your seat cushion can double as a flotation device. If we make a water landing. I highly recommend using it. And then if you’re already in the water might as well have fun. Marco! Polo!

Okay time to die now, have a good flight!

I couldn’t resist: So many Hospice themes were in there …just a rhyme away:
How no one’s an expert on dying.

How we need to share with our mates our thoughts about how we plan to exit this plane.

How some of us have the odd job of being at the exit row leading others out, as I did, for two and a half years. And how we sometimes don’t feel up to the responsibility.

What I’m going to focus on is the turbulence in the dying process. As Dave says: if you’ve ever seen it you know isn’t funny. Well maybe just a little bit. And he’s right, if we’re going to go down, and we all are some day, we might as well have a good time.

To carry the airport analogy just a teeny bit further, I’d have to say flying and dying have something else in common. The hardest part is the boredom, the waiting to go. That sitting around in the terminal area. Men especially don’t like to wait though women aren’t any better at it, we just find more things to worry about as we do it, and we call that worry: processing, or connecting…or something.

Men, I’ve noticed just want to get on with it. In death as in life. If they can’t do the things they’ve always done whether for a living or as a hobby, then it’s time to go. He might be depressed about it, sad, or angry but he just doesn’t see the point in lingering on, much less talking about his feelings.

Women, sorry to say it but my little pocket of statistical research on 1500 patients bears out a stereotype: we worry an awful lot about how we look while we wait. In death as in life. On my hospice inpatient unit we had a woman who actually wrote a note before she slipped into a coma telling us that she absolutely, at all costs, wanted us to keep her teeth in her mouth at all times! Including, and she was specific about this, on the ride down to the morgue, and, lest we think she was done with us, from there to the funeral home where she knew they’d have the good sense to make her really look good. She’d seen these other dying people in their rooms on our inpatient unit lying there with their cheeks sucked in and she didn’t want her visitors, or the morgue attendants to see her looking like that.

Lest you think these stereotypes I am admittedly perpetuating are confined to, say, the World War Two generation think about today’s botox users and manic gym rats when it comes to the issue of vanity. And as for the difficulty of having feelings? They’re not easy for anyone to deal with male or female, no matter how much therapy we’ve had. Especially when asked to unload them with a stranger.

In other word, on a hospice inpatient unit it’s not necessarily: It’s Tuesday it must be Morrie. Not everyone wants to have deep philosophical conversations. The problem for me was that it was my job to try to get them to talk, even just a bit.
Think of our inpatient unit as an international airport, or maybe Central Casting to mix my metaphors. In it were people of all religions, though most were Catholic, all races, though most were either Hispanic or Italian. They were of all classes though most were blue collar. There were electricians and plumbers and truckers and a doctor or two, there were housewives and beauticians and teachers and waitresses. There were addicts and alcoholics and street people. There were a couple of low level Mafiosi, and one famous actor whose name I can’t of course reveal. We even guided the King of the Gypsies, well, one of the kings, of one of the clans anyway, to the Other Side.

The dying were of all ages above 18, thank God we didn’t serve children. Most were over 70. The wonderful grace of working with hospice nurses is they think 75 is young. To be 50 is practically adolescent. That is because none of us is supposed to die until we’re 90 at which point we finally earn the title old and are expected to slip politely slip off in our sleep. In other words the 50 and 75 years olds just didn’t belong there; it wasn’t supposed to be their time.

Let me describe the physical surroundings to you for a second. There were eleven rooms. All ranged down the hall on one side like this. Each room was nicely wallpapered, with Manet and Monet prints on the walls, and rocking chairs next to the bed. The eleven doors were kept open so the nurses could eyeball people as they walked past, and see if they were still breathing.

Each morning I’d come in and walk the long gauntlet. I would surreptitiously peek out of my left eye and mentally note: still there, still there, empty, still there, gone, new one, still there, still there, and so on.

Family members who visited their loved ones did the same thing of course after visiting for some days, though we instructed them not to look in other people’s rooms. You can’t help but do it, take the count, make a mental tally, ask how many are under your own age, how many above it, as if keeping statistics will somehow give us some sense of how much time we have left ourselves, or how lucky we are so far, or whether something is statistically happening to the average age of death in this country that we should know about.

One man, a son in his fifties, liked to stand out in the hallway and watch all the comings and goings and one day he stopped me and said: “no one gets out of here alive do they?” It’s the kind of obvious statement that when you hang out on an inpatient Hospice Unit takes on a much deeper Zen quality than it would if delivered only from the intellect. He was staring down what Ganga Stone in her book “Start the Conversation” calls The Contract that we’re given at birth.

The contract is just that. First clause: no one gets out of this life alive. Clause #2, the one that’s hardest to accept: death can come any time and at any place.
And yet we will “never be sufficiently surprised that everyone acts as if no one knew.”

The inpatient unit was a daily reminder of both clauses of the contract. And my role, as defined by my superiors, seemed to be to get the dying and their families to deal with the contract. In this, my job was a little different than some of the other staff jobs. The nurses dispensed medication and kind attention, did mountains of paperwork, and dealt with doctors’ orders. The nurses aides dealt out kind attention, dealt with nurses’ orders, and cleaned up the messes as if it was no big deal which made the patients feel grateful and intimate with them.

What they did was actually enough, most of the time. They, we, and the pleasant physical space, created a gentle womb around people as they grieved because of course dying people are grieving people. Rev. Jim Forbes speaking to Bill Moyers the day after 9-11, when Moyers asked him how people should handle the enormity of their grief and shock, said: “the body knows how to sort out the multiple impulses of grief”.

What we tried to do on The Unit was create a place for people’s bodies to sort out the multiple impulses of grief. Hospice is the dying person’s equivalent of natural childbirth. Rather than lots of machines around to help them in their labor there are people available to simply breathe with the patients through the struggle of dying which is just as natural as, and somehow very similar to, being born or giving birth.

At the same time, and this is where some of the stress comes in, hospice, now that it is largely funded by Medicaid and Medicare is a lot like an airport since 9-11. In other words there’s a lot of government surveillance. Into this amazingly diverse setting I would come each day like a customs and baggage inspector. I was the baggage inspector.

Here’s a sampling of what I had to document on my “Spiritual Assessment Form 700-POC-6”. I had to determine if a dying individual suffered from or was dealing with:

loss of self esteem
fear of death
preparation for death
excessive guilt
unresolved grief
confusion re beliefs
difficulty expressing feelings
forgiveness/reconciliation,
despair/hopelessness,
loss of meaning and values
denial
loneliness
family conflict re beliefs

Then I had to outline a plan for treating said afflictions. And all this had to fit on a one page triplicate form. The reason I’m complaining about this isn’t only to get your sympathy. It’s to share you with you an odd little insight, which probably most of you have had already. That when people are dying, their bags are packed. That’s why they were on the inpatient unit for heaven’s sake. They were entrusting us to fly them safely over to the other side, with their baggage in one piece. They didn’t want to have to unpack them and watch us mess up their stuff, after which they’d have to pack it up all over again.

Many of us think, especially those of us trained in a helping profession, that dying people are just dying to unburden themselves before they go. Not so. Some certainly, but most not. So in a way when we go into a room and prod it’s like we’ve picked them out of the line of travelers to have their bags tossed. And then everyone can see those private contents their mother told them to hide on the bottom.

Because of my training as a minister (to “be with the person where they are”) I most often had to choose a stealthier method than the outright search and seizure of personal effects (and affects) We just had a conversation and when we were finished I charted, and made some semi-educated guesses about whether they were prepared to die, whatever that means.

I hope they didn’t feel like I did when I got home from my trip to my family reunion on Dave’s Airline to find a little slip of paper in my luggage saying I was one of the lucky ones chosen to have my bag searched behind the scenes. Kind of irritated. A little bit invaded.

Some dying people make it all very easy of course. They pull the elephant right out from under the rug and say: I know I’m dying, but whaddya gonna do?

“I mean really”, said one older gentleman staring at me with a very direct and penetrating stare, “what are ya gonna do?” I had to surrender, had to admit there wasn’t a darn thing I could do for him except listen to him tell his stories until he was sick of even that. These men (and they were mostly men) came to be known on our Team as the Whaddya Gonna Do school of thought.

Others wanted only to talk about their grandchildren, said they were ready to go that leaving them was the only reason for sadness. “I’ve had a good life, it’s not like I didn’t know this was going to happen!” they might say. At which point an eyebrow might arch and he or she (usually a she) would look at me like, you don’t take me for a fool do you?

No one wants to look like a fool when they’re dying. For some people that means looking good on the outside as we’ve already discussed: you know, the teeth, the lipstick. For others it means looking good mentally or spiritually. For them it meant letting me know that questions like: why me, or how could this happen were foolish and they knew it. They knew there had always been a contract out on them.
But now and then I’d encounter someone who was able to let go of the need to look good spiritually, and could let him or herself be a fool. I remember one 87 year old woman who was always lying in bed looking very thoughtful and alert, yet staring in the distance at one particular thought, or so it looked to me. A lot of patients seemed to stare at that one spot. This 87 year old woman was caught up in one particular Zen koan which she was studying deeply over a period of days and weeks.

The koan was this:

“I never thought this would happen to me.”

Did I tell you she was 87?

I was having a bad day the first time she said it. So please forgive me when I tell you that I said to myself of course: you what? You never thought this would happen to you? Where have you been all your life?

I made my face pastorally bland and waited. She kept shaking her head, “never, ever thought it possible. Amazing isn’t it?” Maybe it was her tone of wonder. I breathed a little more easily and shook my head to clear it of my denseness. Of course! This woman is simply speaking from a place I have not yet been and absolutely will not be able to feel until I get there. So what if she is more than forty years farther down the road than me. That doesn’t mean she is any more ready than I would be if it happened to me today.

Inside her rice paper body barely holding its shape through the shifting sands of its disintegrating bones was a young person who still believed she had plenty of time. Even though her body had been backfiring like an engine low on oil, for about ten years, it would be impossible to fully comprehend that she was really at the end of the road until she got to the end of the road. Impossible to fully comprehend that she was really just days away from that funeral service she’d already planned with her kids, and from the grave stone she herself picked out.

So, as if in a dream, as if hypnotized by that spot in the air, I agreed with her: “And you probably won’t be able to completely believe it until it’s actually happening, and maybe not until it actually has”.

She looked at me really sharply then, just a little bit of fear in her eyes. She hadn’t been quite ready to go that far yet, that was still a few days and many meditative hours away in her sorting process. I’d moved her along too quickly. What is it about us mortals that we feel we need to be able to put a check by that item: prepared for death? I suspect it’s the fact that we’re all control freaks when it comes right down to it. So much of our living when we really study our lives (our anxiety, our worry, our hurry, our proving of ourselves, our ambitions) and so much of the writing about death from Michel Montaigne in his essay “Philosophy as the Study of the Preparation for Death”, to all the pop culture books about death and dying is about trying to find a way to not be caught with our pants down. Or our hair out of place. Or our business unfinished. Or alone, or looking stupid.
Montaigne for instance argues convincingly that the aging process prepares us for dying, that by the time we get there we’re so tired we’re ready to go and we couldn’t care less anymore. Which is true, in some cases. But what interests me is the underlying need to convince us that we can get ready.

What being with my patients taught me is: just as nothing we do to keep ourselves alive, not jogging, not taking our vitamins, not a spiritual program, nor being kind and good, can guarantee us the full 90 years on this earth we believe we are entitled to, neither can anything we read, think, study, or plan fully prepare us for the emotional reality of death.

And as many of you already know there is no way to prepare ourselves completely for what it will feel like when someone we love dies. People will prepare themselves when they have to. Or they won’t. Some people have unfinished business, some don’t. Some people go peacefully, some go out fighting. That’s okay. I learned that it’s not the business of the living to tell the dying how to play the last act before the curtain goes down on their show.

However, sometimes in dying, as in living, other people’s drama is not fun to be around, and then we have to get out of the way of the abuse. I had one dying man, a former doctor, say menacingly to me, in a sick mean voice, as he did to the nurses, to get out of the room saying: “you’re a stupid b----, what do you know, the littlest bone in my body is smarter than what you’ve got in that pea brain of yours”.

I wrote “declined spiritual care” on his assessment form in big capital letters.
Then his family came to visit and they asked me to come in and talk to them and my supervisor made me write: accepts spiritual care on an interdisciplinary update form, HNJ 700-N12, in triplicate. The doctor was sweet as could be in front of his daughters, fawningly, sickly sweet. They would lean on him and cry loudly about how they would miss him and he would raise his head above them and look at me with a cunning malevolent grin. If he wasn’t so terrifyingly convincing in his role as the devil, or King Lear, I think I would have laughed out loud.

For those who would accept spiritual care my job was to offer the presence of complete acceptance as they did whatever kind of mind/body sorting they needed to do and to offer prayer. Prayer does lessen emotional pain. Especially prayers which people have known all their lives and are so deeply grooved into their psyches that they are like healing water, they tap into ancient springs. The 23rd psalm especially: yea though I walk through the valley of the shadow of death I will fear no evil for thou art with me. I can’t tell you how many bodies I’ve seen relax their pain and let go as I said that prayer.

It took me awhile to learn the different kinds of pain. To distinguish emotional from physical pain and also to learn how connected they are. One day I was sitting with a man who was about my age so I became instantly overwhelmed and exhausted by the evidence of part two of the contract: Anytime, anyplace. This man’s face was contorted with pain, agonized. Hospice is really good at keeping physical pain at bay, and the nurses said they’d done all they could for his pain, that there was no reason for it.

But who could look like that if he wasn’t in pain? We kept asking him: What can we do for you, where does it hurt? He was so busy with whatever he was sorting out that he could only shake his head. So finally I just sat there with him, stunned, I’d not yet seen anything quite like it. I asked him if he minded me staying. He shook his head no. He seemed truly to want a witness. So I just witnessed.

Witnessing is one of the ways, for some people, those who want it, of creating that warm protective womb/room for them to do their sorting. Being watched in silence, while the watcher reads, or knits, or just rocks in the rocking chair, gives the dying person the chance to relax their own guard. The watcher is now the guard. They can fully focus on their dying.

I did learn this much, and would pass that on to family members who felt like they needed to DO something for the dying person, those who hated the feeling of helplessness, of powerlessness. And who doesn’t?

There are times when we can do something for a dying person even if it’s only to wet their dry lips, but sometimes that’s about it, nothing else can be done. So I’d tell them: Just sit with him, or her, maybe hold her hand for a few minutes. Maybe tell her you love her, say what you need to say. That too is doing something. This seemed to help some family members, though they didn’t believe it was really enough.

Once or twice that line backfired on me. That’s the problem with the various “one size fits all” approaches to dying which hospice sometimes seems to promote. There was a woman walking down the hall with me to her husbands room, he was a quiet nice guy, very polite with me, he’d filled me in on his religious background and told me a few things about himself. An easy case we all figured. He would slip gently into that dark night. The wife on the other hand was tense. She said I don’t know what to say to him. I don’t know how to be with him. I missed something unusual in her tone.
So I did my little line about just being with him and telling him she loved him. She stopped dead in her tracks and looked at me penetratingly. “I don’t love him!” She said. It came out later in a two hour session with her that he had sexually abused her children and she’d stayed with him anyway, and she was angry at herself for not having left him long ago, and now he was the one doing the leaving.

She wasn’t able to be a quiet witness for him, which was fine. I still had to be. Miraculously it is difficult to place judgments one might ordinarily have onto someone who is dying. Like all the other dying he was simply powerless. He was slipping out of his earthly story as if it was a skin, even as the people around him were left to deal with it.

Being a witness to the dying of hundreds of sinners changes you, but I’m not sure how, just yet.

For some people having a witness is an interference. People who are dying necessarily withdraw, just like Meercats in the Kalahari Desert. They might want the other cats to make a caring circle around them but at the very end they go off a few feet away, to be alone and stare at something we can’t see. Some people withdraw months ahead of time, some weeks, some only hours or minutes.

I had this very common belief that no one should be alone when they die. It is very hard for us humans to just let people alone. In dying as in life: To mind our own business. So I would often sit with people who had no one, including the comatose. I liked to watch the comatose because I thought such a meditation would make me spiritually wise. The Buddhists say one should stare at a corpse to learn about impermanence which teaches one both loving detachment and compassion. Well, many of our dying looked like corpses, mouth gaping open, skin and bones, eyes half closed and unfocused, pulse barely discernible, not eating or drinking for weeks.

One day I was witnessing the death of another 80 something year old woman who was doing her spiritual work with her eyes closed, semi-comatose. I sat there at this comatose woman’s bedside, because no one should be alone when they’re dying! I was righteous about this. Where was her family! I was busily over-identifying and weighing judgments against the living, when suddenly she opened her eyes, looked at me sharply and said: “I really can’t think with you sitting there”.

I hate to think how long it took her to muster up the energy to rise up from her tomb and say that.

Meanwhile, back to the man who was my age, whose face was contorted with pain, but whom the nurses said couldn’t possibly have any pain, and who nodded yes that he wanted a witness. I sat there and stared, and I think there must have been something familiar about his pain. It looked like the pain of loss, and it looked like the pain of confronting demons, and of confronting the harms one has done to others and so I knew he would be delivered because he was letting it rock him and yet he had no fear.

I realized that we had been bothering him with our own need to relieve his physical pain which he kept telling us didn’t exist. I saw now that he had no physical pain except that which came about as a byproduct of the emotional pain. So I finally said to him after a half hour or so: “I see that you are in emotional pain. We can take away the physical pain but we can’t take away the emotional pain. I wish we could take this pain away. I am sorry that we can’t. But it looks like the only way out of this is to go through it.”

He looked right at me and managed to mouth two words: “Thank you”. I went and wrote up the whole story and a recommendation not to bother him with more questions about physical pain. It was one of the few times I felt like I managed to accomplish an actual concrete task in hospice.

There are lots more tales to tell but we’re nearing the end …so I’m going to have to choose an exit door. I choose…..Barbara.

I figure if in life I keep looking at what Barbara was looking at in the very end…well, I’ll be… who am I kidding I don’t know what I’ll be. Anyway, Barbara was about five years older than me. She had beautiful kids, college age, whom she was angry at for not caring enough about her to visit often. She had a divorced husband whom she was still bitter at for leaving her, and rampant metastases from breast cancer which she had ignored because as she was, as she bitterly described herself, a martyr who worked too hard to put her kids through school when she should have been taking care of herself.

Some days Barbara was open to talking, some days closed. Some days she was sweet and I could see her former warm charismatic self, and other days she was hard and angry. She tried hard not to be rude, and when I told her to say whatever she needed to say, that I wouldn’t take it personally, she’d get even nicer because she liked being the one in control.

Barbara was on an emotional roller coaster. She also refused all medications. She wanted to tough it out. She wanted to feel every last thing, she said. I wondered if she was punishing herself somehow. She said no, she just wanted to be alert and in control.

One day, the day she died, we heard her screeeeeaaaaaming the words: Oh my God! in terrible pain and shock. We went running. We stood in a tense, painful circle around her as she continued to scream, Oh my God.

One nurse said angrily “I’m out of here, I can’t watch this”. I stayed.
Barbara kept on yelling only those three words, but over a period of time the tone of it changed. The pain clearly was lessening or becoming less important. For awhile her tone was angry, accusing, then something shifted.

It was as if she was giving birth.

I remember a not muggy NC night decades ago when I was sleeping with the windows open in my house and a woman next door was giving birth, at home, with a midwife. I didn’t know that was what she was doing. They hadn’t warned the neighbors. To be honest, at first I thought she was having sex. Oh My God! Oh My God!

But no one goes on as long as she did. All night long I laid there and listened to her, mystified. Barbara also went on. Now she began to focus on that something the dying stare at. Some of them for weeks, some for hours, some only at the last second, and some from behind closed eyelids.

Oh My God! Oh My God! It was somehow transforming into a tone of wonder, Oh My God!

Finally:
Oh.
My.
God!

Her face cleared, and she slipped into a coma. No drugs, nothing. Four hours later she died.

I believe the place in us which is the clear unsullied nonverbal witness is the same place the dying stare at.

The witness consciousness in us, that place that can achieve moments of Oneness with other people, with nature, flies out to meet the vast eternal Witness Consciousness out there. Everything unreal, the personality which is after all only a product of the ego anyway, melts away. We finally slip out of our story which we think IS who we are, and merge again with that larger something that really is us.

I know there is nothing to fear about death but there is much to fear about dying. As in death so in life: That struggle to be who we think we are, right up to the end. And the hard work we put into the attempt to make everyone else see us as that someone we think we are. It is a fearful struggle. Sometimes a funny one. How will I look? Will I leave them with good memories of me? Will I be mean? Will people be mean to me? Will people want to be around me? Will it hurt?

There is anticipatory fear about the narrow door. What will happen at the exact moment, people would ask me, though not always in so many words, when I pass over? What did I know? I’ve never died. But they knew I’d seen enough of death to have seen something. All I could tell them was the truth: that what I have noticed is there doesn’t seem to be a thing to be afraid of, especially if we can relax into it. And I would say: You won’t be alone. You have people all around you. We’ll be breathing with you and holding your hand.

You won’t be alone in that moment. I think they knew better. The words felt hollow even to me. My 16 year old nephew Sam knows better. At our family reunion which was held in Tennessee a couple of weeks ago he was walking with his mom past an elderly man sitting on the porch of his house where he lives alone. His mom turned to him and whispered: That’s kind of sad, to be all alone like that. Sam turned to her and said: Mom, we’re all …really …alone.

To which I would say to Sam: True, and never more so than in that split second when we let go and cross over. But ultimately, and we can get a taste of this in life when we practice slipping out of our favorite stories about ourselves (victim, hero, lost soul, good guy, bad guy), ultimately, not alone.