Ready or Not in the Land of the Dying

I was sure he'd have died by now.

He was sliding fast last spring. I hoped he'd see his birthday in late June, but was positive he'd be gone by August.

Positive.

Come his birthday, and he rallied. I mean, really rallied. Not just ceasing to slide, but returning to a place he hadn't been in many, many months.

• He was awake for hours at a time.
• He looked people in the eye.
• He cracked his distinctive self-depreciating jokes.
• He laughed and sang.
• He thanked the caregivers for their help.

The visiting hospice nurse was shocked--pleased shocked. "Now I know why you all say he was such a great guy."

I couldn't help it. I began to fantasize.

• He isn't dying, at least not soon. We'll have years together, yet. Good years. Awake, aware, and happy years.

This went on for about a week. Then he rapidly slid further than he'd been before--barely opening his eyes for more than a few minutes--mostly staying distant and unfocused.

But the damage was done.

When we first approached hospice, I was not remotely ready. I only tried it because they evaluate you after three months. If you aren't clearly dying, hospice kicks you out again. I figured that would happen to us.

It didn't.

One evaluation. Two. He was certified dying--even if at slower than the proscribed, gone-in-six-month rate.

Since the beginning, I'd assumed that when the time came I'd say, "I'm fine. Don't hold on just for me. It's okay."

That would be a proper monk-like attitude.

Now the time was imminent, I found I couldn't do it.

I wasn't fine. It wasn't okay. I desperately wanted him to hang on for me.

My whole mind and body screamed, "Don't go. We were supposed to be together for many more years. Don't leave me."

Nine months passed. A third evaluation. Still, hospice kept us. And I changed. I began to feel that I could let go.

Listening to his cries of confused pain in response to the most benign bodily care--a wipe on the chin, for example--that helped. The stress of life with caregivers also helped --selfish as that may be.

Mostly, time helped. I just got used to the idea again.

Then came the day he said he was dying. Right then. I found myself saying, "Don't worry about me. I'll be fine."

It was true. With my whole heart and body, I knew I would be fine. I was finally ready. What a relief.

Until his birthday rally.

Now, that is a lie.

Five months and several hospice evaluations later, my only thought is: 

"Please, don't leave me. Not yet. I can't live without you."

*  *  *  *  *  *

Living with Strangers

For nine months, I barely tolerated my narcissistic weekend caregiver and his slovenly ways.

He never cleaned.

He broke my dining room chairs.

He wore his pants so low, he graced me with his bare butt when he bent over.

He grumbled, grumped and demanded that I meet his latest need.


Finally, I could no longer stand this man radiating bad temper through the house while my uncle was dying. Yet, the company who supplied my caregivers refused to replace him.

So, I decided to do what I should have done long ago: get my weekend caregiver from a different company. I'd put it off and put it off, not wanting to rock the delicate, care-giving boat.

I've gone through a lot of caregivers since my uncle has lived with me. I feel incredibly lucky to have a great person five days a week. What if I went to another company, yet got another dud?

      It's not easy being a live-in caregiver. It's much harder when
      a competent person is living right there. To succeed, my
      caregivers must do everything for my uncle - who can do
      nothing for himself - PLUS get along with me.

I sympathized that someone might find the situation stressful.  That didn't mean I should tolerate a resentful person skulking about.

Then, like a miracle, without my doing anything, the annoying caregiver disappeared. I was assigned an amazing man from Southwest Nigeria (the region Shell and BP have made into an environmental disaster area). Highly educated, experienced, and with an optimistic sense of humor - he was good with Milt and with me.

I couldn't believe my luck or blessing or whatever it was.

I felt more relaxed than practically since I started this gig.

Living with a dying man is an emotional wringer, but that is not so hard. Hard is sharing my house with an endless parade of well-meaning or not-so-well-meaning strangers while that emotional wringing is in progress.

*  *  *  *  *  *  *

Death Practice

I knew it was time for Milt to be in hospice last fall, but I still didn't like it. When I agreed to do this, I thought we'd have at least five years together, hopefully longer. Two and a half years? I couldn't make sense of it. I gave the hospice folks a lot of grief as I twisted and turned, pushed and pulled, unable to lie comfortably in this new bed.

I'd expected that when Milt was ready to let go, I wouldn't hold on. I didn't want him to linger just to take care of me. But the fact is, last fall, I could not honestly say that to him. However much I didn't want to, I clung to him, a desperate hunger in my throat. I needed him to live.

Luckily, he was not in a hurry, either. We coasted along, immensely helped by hospice, as Milt slid slowly toward the end. The change was so gradual, it was only obvious when it was time for his six months review.

To stay in hospice (at least paid for by medicare), you have to be in a steady decline. The expectation is that you'll be dead within six months. You can take longer - as long as you are making steady, downward progress.

When I made a list of Milt's losses over that six months, there were many. No question we could stay in hospice - thankfully, as we had grown dependent on their services - but it was a great reprieve. He might be dying, but he wasn't dying all that fast.

Then, about two months later, he suddenly said, "I'm dying." His voice was softly wondering, as if he was simply cataloging an interesting fact.

Now, Milt has not wanted to discuss his impending demise and had never previously said anything remotely like this. Not only was it a strange thing for him to say, his whole affect had changed. He was oddly blank and floating - lying back with his eyes rolled up to show the white.

"Are you dying right now, today," I asked.

It took awhile to get his attention, but he said yes.

"Your brother is visiting tomorrow. Will you still be here."

"No."

Nothing was hurting and he wasn't scared. He was simply ready to go and he was going. I held his hand and for the first time, was able to honestly say that it was okay for him to go. I would be fine.

Turned out to be a practice run. It seems it is not uncommon for people to dip into dying and then come back. Like they need a taste before committing to the real thing.

At ten months and counting, Milt has had two more hospice evaluations. He is still on a steady slide out. He's also had four more of these dying practice sessions. He had one today.

Am I still ready? Well...

* * * * * * * * *

Dying in Peace

My uncle lives with me. He is dying. With hospice at our sides,* his passing has a good chance of being gentle and sweet. He’s on the last stretch. I hope he makes it to his birthday in late June, but don't expect him to be here for long after.

Still, his body has a fair bit of letting go to do. He eats less and less, but still eats. (Those truly ready to go often stop eating altogether.) He mostly sleeps, but has short periods of wakefulness and engagement. For an entire day a couple weeks ago, he suddenly returned to the man he’d been – chatting and laughing and showing the astonished hospice folks why he’d been voted funniest professor year after year.

Although his actual slide out of here promises to be easy, in the meantime life has gotten very hard. The slightest touch brings on screaming, swearing, and pleas to stop. Dementia has eaten the part of him that would have let him steel himself through necessary pain, leaving only the moment of agony.

“They’re mean to me,” he replies to my morning greeting. "They tortured me."

In the U.S. with our lack of social services, my uncle is lucky. He can afford decent home help rather than being warehoused under the care of overworked, underpaid, demoralized “nursing” home employees. I’m there to make sure his care is as attentive and kind as possible.
After a year struggling through one comically inadequate live-in helper after another, we stumbled into the arms of a gracious, attentive CNA. A Sunni Muslim from India, he quietly prays when it is time - his devout observance, my uncle’s atheism, and my own eclectic spirituality coexisting without tension.

Finally, reliable care for my uncle. Respite from anxiety for me. 

Yes, we are lucky. For those poorer and less lucky, how much more traumatic dying must be. I expect I will be among the mass of poor and unlucky ones when it is my time. Having watched my uncle, I frankly don't know if I can let myself down into that well or not.

* Medicare presently pays for hospice home care visits during the last six months of life. This serves the caretakers of the dying as much as the dying person. We must not let greedy, corporate privatizers and their political henchmen take this rare benefit.

* * * * * * * *

Grief, Joy, Rest

I'm learning yoga nidra. This is the yoga of deep relaxation and complete self-acceptance - the exact
opposite of throwing your body into extreme poses - as "yoga" so often means in the US. Yoga nidra is deeply relaxing. Yet like meditation, the practice brings increased wakefulness and awareness through greater presence to the whole truth of your experience.

In order to accept yourself you have to be present to yourself. You have to let yourself feel.

The version of yoga nidra I'm learning is called Integrative Restoration or iRest. It relies on body sensing and includes the practice of experiencing opposites as they show up in your body: opposite physical sensations, opposite emotions, opposite messages about yourself.

I've found this practice really illuminating, especially when overwhelmed by one or another difficult emotion like, say, grief. Flooded by intense grief, my body wants to hunch over with shoulders curled in and head drawn down. Feeling joy, my head lifts, chest expands, and heart opens.

The cat yoga pose has the drawn in quality of grief while the cow pose has the opened up quality of joy. I was already doing the cat/cow progression regularly as it is great for low back pain, increasing flow and movement in the lower spine. You don't even have to get on your hands and knees, but can do a version standing or sitting in your office chair.

Prompted by my yoga nidra practice, I began to go through the poses while feeling the opposite emotions: cat/grief and cow/joy, cat/grief and cow/joy. I let myself fully feel each emotion while expressing how it showed up in my body. Some minutes into this practice and I would be able to be fully present to both feelings at the same time. Amazingly, the emotions then began to balance. Neither was as intense as before and I arrived at a state of rest. I didn't need to suppress the difficult emotions, deny them, or distract myself from them. I found rest while still feeling the feelings.

How amazing. Joy plus grief equals rest.

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Ordinary Light

After my monastic experience, you'd think I'd be suspicious of any self-proclaimed purveyors of Truth. You'd think I'd look first for the man behind the curtain. Still, I thought Amma was different - what with her free-hug darshan and "all money for charities" cant. Besides, many of my friends were Amma followers

True, her idea of karma was kindergarten simplistic & opposed to my own perceptions (people as completely separate and individually responsible for all positive or negative acts - which are totted up like a bank account). And of course, I never thought her some perfect, ego-less, goddess-on-earth or expected her organizations to be of pristine spiritual quality. Still I thought her a worthy guru, someone who channeled the divine energy more clearly than most

I was so desperate for help cutting through the fog so I could resonate with the divine light within. The way I had done in the monastery. The way I so thirsted for, but could not find in the world. Amma's darshan was thick with that energy. It rose from the crowd to fill the hall. I felt I could happily swim in it forever.

Amma's darshans were equally thick with buyers and sellers. The first time I saw Amma, my desire not to own stuff prevailed. I spent little and the marketplace atmosphere slid by unremarked. The second time...

That it was for charity bolstered my prickling desire for acquisition. The demon avarice overwhelmed me. Oh, not just to buy objects. I spent much on various forms of pure donation. Still... By American standards, I am a poor person. Yet, I spent all my pitiful savings. ALL.

This hit after I came home. To help myself feel okay, I decided to listen to people helped by Amma's charities, people much poorer than me, a homeless person who'd gotten a home, someone who couldn't afford school fees who'd been given an education. I searched the internet for the blogs, posts, notes, letters of real people whose real lives had been changed. I found...

Nada. Ziltch. Zip. Nothing but the glittering ads of the Amma organization, itself.

Huh? Given the hundreds of thousands, perhaps millions, of people her charities had served, surely some should have an independent web presence. Nope. Instead, I found disillusioned ex-devotees eager to tell the other side of the story. They gave massive evidence that Amma was but one more victim of the Guru Effect.

sigh.

Maybe people who truly have a larger opening to the universal, spiritual energy generally start out well. Yet more often than not, they get caught in the snare of pride. Followers are desperate for a divine savior. They want to worship the person, hang on her every word, etc. Glitz, hype & the need to appear as more than she is soon become irresistible. Pride opens the door. Soon all the little demons - desire for ownership, for relationships and for consumption (aka avarice, lust and gluttony) - are holding a rave in her house.

The 4th century, desert Amma, Syncletica, advised against teaching or leading others, saying, "As wax melts when it is near fire, the soul disintegrates in the face of praise."

She went on, "Pride attacks subtly and secretly a soul that considers itself zealous and diligent in discipline... The soul imagines that it has grasped matters incomprehensible to the majority, that it is superior. It forgets all its sins and mistakes. The soul is deluded with positions of command - with teaching posts and displays of healing. Thus deceived, the soul perishes and is destroyed."

In other words: the Guru Effect - when the clay that every guru has for feet rises to consume her or his whole being.

Does that mean there is no divine light, that there are no legit teachers or practices that can help us find that light in ourselves? No.

I've literally seen that light: in myself and in others. I know it is there. Waiting. Loving. Gentle. Eternal. Non-judgmental. Self, yet no-self. Reality. Ordinary.

Yet, there are no magic leaders who can take us there miraculously, cleaning out all our gunk without effort.

The Dalai Lama is another exalted spiritual leader with his own clay feet. He repeatedly says, "I am an ordinary man." It is important to get the message:

We are all equally ordinary. We are also all equally divine. Some folks are born more aware of their spiritual being - with a larger open channel to the universal energy. Some are diligent in practices that open their hearts to that energy through humility and compassion. Yet clay remains part of each and every one of us.

Clay and spirit. The balance goes one way. The balance goes another way. And there we are, doing and being life as a body and a spirit, as ordinary and as light.

*  *  *  *  *  *  * 

Pain Gain?

Pain itself is not the point. (Although in the largest, universal picture, who knows what creative good it might serve?) Pain motivates me to do work I would not otherwise attempt - the work of going deep, of being present to all my parts - even the most mangled or corrosive, of embracing all of myself with loving tenderness - with no demand to change or fix.

For most of us, the first response to pain is to close up, hunker down and grow an impenetrable shell. Only that never works. The pain persists and grows under our defenses. Sooner or later, it breaks out in new ways, often through physical disease.

Was I just lucky that my defenses were never all that impenetrable? That the pain broke through with such persistence that each strategy to cope by not feeling soon failed? Maybe my pain was just bad enough that I had no choice but to keep seeking. I don't know, but I feel lucky.

The practice of opening to and accepting all of yourself takes a lot of courage. Desperation for physical, emotional and relational relief has been the fuel my courage required.

I sought help and I found it - so many teachers, companions and guides. I have also been the teacher, companion or guide for others.

Because this work develops what Buddhists call a vulnerable heart - what the old, Christian monastics called humility. Once you have practiced loving acceptance of all of yourself - the fine, shiny bits and the jagged, gunky bits - it is not so hard to be open and present to others. That kind of nonjudgmental listening to others provides great healing that is badly needed in the world.

So the seemingly selfish pursuit of relief ends up serving everyone.

And that is the point - a point well worth any number of pain-filled, sleepless nights. I know. I have 40 odd years of 'em to my credit.

*  *  *  *  *  *  *  *

The Fast Track Outta Here

Over brunch, my friend mentioned the study showing that multiple childhood traumas could knock 20 years off your life.

I grinned. "You mean I have a good chance of going home at 70? Wow" (Taking a wild guess at the longevity of various relations.)

Some years back, I saw a bodyworker who heard the voices of numerous disembodied beings. Once as we discussed the pains du jour, one of those beings said, "Of course you're in pain. You're doing such great work."

Ha.

People with a trauma history tend to have a slew of physical ailments. Because we signed up for the fast track. Because we are doing great work. We get such masses done so very fast, we are in the early release program. We get out while others have to keep at it for decades more.

'Course, I don't have enough of the studied traumas to get the demonstrated 20-year early release, but surely - given that I haven't slept well for over 40 years and am in constant pain - surely, I've managed to shave off at least 10 years.


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