For the past couple of weeks I have been helping care for a woman with cancer who has come to Los Angeles for treatment. I am also assisting her 87-year-old mother who has flown into town to be with her daughter. All of the care and logistics have been quite overwhelming and I have been getting very little sleep.

Obviously, I haven't had a chance to update my blog entries. I was already behind on them before I got involved as a caretaker. I will endeavor to catch up when I get the chance. I just wanted to write a brief update since my last entry was a rather ominous one and I didn't want to leave things hanging on such a dark note.

I am well, though a bit exhausted.

Good night.
Breathe deep.

Zum

I usually start at the beginning, but this time I think I'll start HERE and NOW, at the end. Or at least near the end.

It's 4am in the morning and I'm at the Bay Crest Care Center in Torrance (south Los Angeles). And I'm watching a life come to an end.

For the second night in a row I've been up all night, keeping vigil over Carol*, watching her rasping breaths and frail body as she struggles to stay alive. If she stops breathing, I am supposed to make a call to her 87-year-old mother who is sleeping in a nearby motel. Instead, I think I will go over to the motel myself and give her the sad news in person. Despite her age, she still has an amazing amount of pluck and a great sense of humor. But there's still no getting around the fact that she will be devastated. She's still hoping that some miracle will save her daughter. I can't think of anything more tragic than a mother watching her child die.

Things have changed so much in just a few short weeks. And yet it feels like ages ago that I was meditating and cleaning and chessing and sleeping on these glorious Southern California beaches.

It all started with an email message from some Alaskan friends of mine. It contained a forwarded message from a friend of theirs regarding a friend of his who needed some assistance in Los Angeles while she was receiving cancer treatment. A friend of a friend of a friend, so I guess that's three degrees of separation.

Carol came to Los Angeles from Alaska at the end of February to undergo radiation and hyperthermia treatments. A few friends came down at different times to support her, but she became weaker due to the advanced state of her cancer and the side effects of the treatments themselves, and so she needed full time help. She knew no one down here in L.A., so when I received the forwarded email from her friend, I offered to lend a hand.

One of the most challenging aspects of her condition is that so many things cause her intense pain. She gets frequent chest and stomach pain spasms, and her body is so fragile that even slight movements can cause her to scream out in agony. Often she will wake up in the middle of the night screaming in pain. Just shifting her sleeping position could take up to an hour of slow, painful, infinitesimal adjustments. Her wound cleaning regimen can take hours. She reminds me of the painfully hyper-sensitive sister in Edgar Allen Poe's "The Fall of the House of Usher".

The external portion of the tumor itself is like nothing I ever could have imagined. I won't even try to describe it, but it is so overwhelming that I've seen nurses gasp, and one actually had to leave the room when she uncovered it. The smell can be quite overpowering too, especially in conjunction with Carol's colostomy bag. It wasn't until a week and a half after I'd been helping her that one of the doctors told me that the cancer had already metastasized through other parts of her body and that her condition was terminal. They considered her treatment to be purely palliative.

But Carol has been battling this cancer for five years now---longer than she was originally predicted to survive---and she has been focused on curing herself. Indeed, the external tumor has been shrinking and dying over the weeks, discharging pus and blood and some liquids I don't even recognize.

When I first came on the scene, Carol was still quite functional and she also had a friend helping out, so I simply pushed her in her wheelchair to her treatments at the clinic about a block away from the apartment she was temporarily renting. As time went by, her friend left and she became much weaker, so I began to take on more tasks. Besides helping her with direct care such as cleaning her wounds, changing her colostomy bag, and moving her, I helped with logistics like arranging flights and coordinating other caregivers. I slept on the floor of her room so that I could help her out whenever she woke up screaming or needed something in the middle of the night.

Carol's mother arrived a few weeks ago. For an 87-year-old she is incredibly healthy and functional, but she still needs a lot of help with all sorts of things. Plus, she's constantly misplacing things and needs to be escorted everywhere.

I haven't been getting enough sleep because there's always so much that needs to be done. These past four weeks have flown by in an overwhelming and exhausting blur of body fluids, pungent smells, and screams. If I looked haggard before, I look wrecked now.

Carol is (was?) a very intelligent and vivacious woman with a keen wit too. She could also be quite demanding and critical. It was an interesting dynamic for me: here I was volunteering my help, yet often feeling on the defensive about what I was doing, especially if I ever disagreed with her. But like I mentioned in a previous entry ("Openings and Closings"), when my buttons are getting pushed, I try to remember that it's a great opportunity to try to free myself from those very buttons, to liberate myself from the power I give people over me. And, like before, I fail pretty much every time.

When a criticism or insult is flung in my direction, I would love to be able to smile, reflect on the merit of the comment, and then let it pass right through me without ruffling my ego. That would be emotional tai-chi. But for the most part, the barbs still poke and scratch, and sometimes I bleed. This monk is still too sensitive to what others think of me. Oh well, like everything else, it's a blessing and a curse. Us over-sensitive people tend to be quite aware of what others are feeling, but it comes at quite a cost.

Sometimes when I'm ministering to Carol's needs, I try to remember Mother Teresa's inspiring words. She said she tries to see Christ in every person she takes care of. When she washed a dying man's feet, she was washing Christ's feet. Religious mystics of other traditions might say that they are washing the feet of God, for God is everywhere. Other Eastern philosophies might say that we are washing our own feet, for others are ourselves. Some teachings (especially Advaita Vedanta) emphasize that the belief that we are separate from others is the greatest delusion of all.

After all, we are the Uni-verse-----literally, "One Poem", "One Song". And while I might intellectually understand this, the mystic's practice is to move from Understanding into Belief, and then, if I practice hard enough and am lucky enough, I just might move into Experience.

Zero degrees of separation.



"They that love beyond the world cannot be separated by it. Death cannot kill what never dies."
---Shane, a supportive Quaker fellow, reading a quote by William Penn after a session of silent worship with us at Carol's bedside

"You are only allowed to say positive things. You are only allowed to tell me that I am getting stronger."
---Carol, after I said that I thought she was getting weaker because she was not eating enough

"I don't want to die in Los Angeles."
---Carol

"Is she your mother?"
---a nurse speaking to Carol's mother (mistaking the gaunt, emaciated daughter for the mother)

"I've never seen anything like that."
---a nurse, regarding Carol's tumor

"I told her if she dies, then I will follow soon after."
---Carol's mother

"Do you know any more monks?"
---Art (a friend of Carol's), seeking more caretakers


* Note: I've changed her name to protect her privacy.

3am. Another night, another vigil at Carol's bedside. I change her dressings, clean her up, meditate, pray, write this blog entry, and watch some bad TV shows. Most of all, I watch her struggle to breathe. It's gotten worse tonight. Her exhausted lungs are filling up with fluid and her breaths are gurgling gasps punctuated by phlegmy coughs and moans. It's hard to watch and I have to remind myself to breathe deeply as my chest keeps clenching up in an unconscious sympathetic effort to get her to breathe.

She's been unresponsive for about four days now, except for occasionally opening her eyes a little when we talk to her. (I still make it a point to talk to Carol about everything that we are doing. A couple of nurses have told me that hearing is the last faculty to go when a person is passing away.) Unfortunately, despite several different pain medications, she still suffers a lot. Whenever we move her, she still cries out in pain. And she is almost always moaning now, as if it is a necessary part of her breathing.

Her "living will" stipulates that no life-saving procedures can be used to intervene in the dying process, so all I can really do is tend to her needs as best I can and watch her die. She's a strong woman and she continues to surprise the staff here with her fortitude, but she can't last much longer.

Carol's mother is also very resilient, but this is an overwhelming situation for any mother to suffer through, especially at 87 years old. For the most part, she is trying to accept her daughter's imminent death, but she is often overcome by grief, despair, disbelief, anger, and even guilt. I try to be emotionally supportive, but I'm sure I can't really fathom the depth of her pain.



"When she finally goes, what I will feel to the extreme is emptiness."
---Carol's mother

"If it was any other patient, I'd say call the mother now, but she's been like this for two days already."
---a nurse at 2:30am this morning

"Is he your boyfriend?"
---a hospital guard querying Carol's mother about me

After five years of battling her cancer, the swiftness of Carol's decline caught us all by surprise. When I first met her, she was staying in an apartment in Culver City. She could move about the apartment on her own and orchestrated all of her care with the help of caretakers, friends, and her mother. She was already quite thin and she began to get weaker. Her sleep was often interrupted by her "screaming pains", as she called them. She became afraid to eat because food caused intense pain spasms in her stomach. What little she did eat and drink passed right through her because of diarrhea.

We pushed Carol to get hospitalized because she was becoming dangerously dehydrated and weaker day by day. She finally agreed when she could no longer stand up and I called 911 for an ambulance that took her to a hospital in Marina Del Rey. At the hospital, she was immediately hooked up to an IV drip for rehydration and her condition improved.

But she continued to eat very little food and refused antibiotics to treat an infection, fearing they would depress her system even more. And she refused to let the nurses clean her wounds since they did not have the time or patience to devote hours to the way she wanted the cleaning to be done. She didn't even clean them herself, saying that she would do it later when she was out of the hospital. She would just have me change the dressings, and even that could take hours.

Her mother and I would spend the whole day at the hospital, attending to Carol's needs: massaging her legs, shifting her position, changing the bedding, cleaning her, feeding her, etc. We usually got back to the apartment after midnight and when we woke up in the morning we headed back to the hospital. Eventually Carol's mother and I had to move into a motel because the original cancer treatment center needed their apartment back. I slept on the floor (which still felt quite luxurious compared to my alley nooks), much to the chagrin of her mother who felt  that we could respectably share the big bed without breaking any rules of propriety.

Carol and her mother had already booked flights back to Anchorage, Alaska, so we were working hard to get her stronger so that she would be able to fly back home. I had to reschedule the flights twice and then eventually put them on indefinite hold as Carol's condition continued to decline, making it impossible for her to fly.

Carol's mother used taxis between the motel and the hospital, but I continued to ride Robert's bike since I often needed to return to the motel to fetch various medical supplies for Carol. Riding back from the hospital after midnight was such a wonderfully peaceful time for me. The whole world seemed so quiet and I often slipped into a blissful meditation as I pedaled along the empty streets back to the motel. This is one of the gifts that the night and the darkness offer me. Of course, this sense of peace was probably due in large part to my relief from all the stress I experienced at the hospital.

I still catch myself rushing about. (My new mantra: "I'm a monk, dammit! Slow down!") I remind myself that there's nowhere else I really need to be in this moment. Indeed, there's nowhere else I can be in this moment. I'm exactly where I'm supposed to be. I am where I am. I'm doing what I'm doing. I am who I am. And if I still my scattered mind enough, sometimes I am graced with a fleeting taste of the great Vedic "I AM". Reality looms up and presents itself----stark, immediate, whole, spacious. And for a brief moment, the fear and craving that comprise my ego fall away as a deep sense of peace and gratitude blossoms within.

And then I usually try to understand it, to grasp it. And IT blows away on the same divine wind that IT floated in on.



"I am what I am."
---Popeye the Sailor Man

"Monks never run."
---Ajahn Vipassi, catching me running at Wat Pah Nanachat ("International Forest Monastery") in Thailand

Me (joking): "You've been trying to get me into bed all week. Madam, I'm a monk."
Carol's mother: "You are no more a monk than I am a nun."

Carol died this weekend. Her long hard journey is finally over, and perhaps a new one has begun.

I've been posting announcements on her "Lotsa Helping Hands" web page (a website that helps coordinate support from family, friends, and caregivers) over the last week to give daily updates on her condition. This is the last one I wrote:

Farewell to Carol*
posted by Zum, Saturday, 4/19/08, 8:11 PM

Dear friends,

Our beautiful Carol passed away at 8am this morning. She let go very quietly and peacefully in the company of her mother, Maria Teresa.

Carol bravely struggled so hard for so many years. Her journey for a cure has taken her to many destinations, finally ending up here in Los Angeles, far from her home and friends. And she battled through so much pain. We are glad that she is finally at peace, but she will be missed tremendously. We now wish her much love and light on the journey ahead.

She has received many loving calls from friends over these last few days wishing her well and expressing their heartfelt goodbyes. No doubt, this helped ease her transition greatly.

Carol wished to have her remains cremated. We are in the process of arranging this and hope that it will be done by Monday afternoon.

Again, thank you so very much for all of the love and support you have sent our way.

Many blessings to all of you.

Zum and Maria Teresa


(*A reminder: I have changed her name in this blog to protect her privacy.)


Maria Teresa is of course grieving very deeply for her lost child. At times she becomes overwhelmed by sadness, but the full weight of the truth still hasn't hit her completely because she is still mostly in a state of disbelief. Mostly, I try to keep her spirits buoyed, but I think it is important for her to grieve too. Saying goodbye yet again to Carol at her cremation today was another hard blow, but it was also another step toward letting go and healing.

By coincidence, Carol was cremated today at the same cemetery that my Aunt Rosie was buried in back in October. I visited Rosie's gravesite to say hello and goodbye again, then dropped by my grandparents' plot to give my regards as well. I find it so very humbling to wander amongst the thousands of gravestones, pondering others' lives and deaths. I also feel very relieved to be reminded how small my life is in the Big Picture. We experience reality so subjectively that our own lives seem so hugely important. But a nice dose of objectivity helps remind me that my life isn't such a big deal after all.

So what's up with all this death lately? I remember way back when I began this walkabout, my very first rest stop was at the Pleasant Plains Cemetery in upstate New York where I meditated upon death for a while. I had no idea that I would be dealing with so many deaths over the coming months. First there was the murder of the homeless woman Terry Wendover that I met in Poughkeepsie. (Another homeless woman, Iris Rogers, was also killed a month earlier.) Then my Aunt Rosie died in October at the age of 90, prompting me to return to the West Coast. Then there was the murder of a homeless man in Venice in March. And now Carol has passed away after a couple of agonizing months here in Los Angeles.

So am I supposed to be learning something from all this? I think I already understand that life is merely an ephemeral flash of grace. I've meditated on public cremations at my monastery in Thailand and observed funeral ceremonies in other countries as well. I was at my father's bedside for his last breaths and now I've been with Carol during her dying process. And I truly understand that zumday it will be my time to turn out the lights and call it a night. All things change. All things come to an end.

Many Buddhist traditions believe that if one truly understands the nature of impermanence and integrates this understanding deeply into one's being, then one will become liberated. The vagaries of life will then be experienced as no more (and no less) than variations in the cosmic dance of constant Change. But I guess I haven't integrated this understanding deeply, for I'm certainly not liberated.

Or maybe I'm "supposed" to learn just how incredibly valuable each life really is. Maybe I'll remember better what a blessing each smile, touch, laugh, and even temper tantrum really is. But for now, I don't really know if I've learned anything at all. I don't know. I don't know. I just know that I'm exhausted and want to sleep for a week.

And yet, I can already hear the wise guys laughing at me now: the Taoist sage chortles, "You can never die!" and the zen master chides "And you were never born!" as they swap swigs from a big bottle of Absolut.....wrapped in a plain paper bag, of course.

Just like everything else.



"In order to die peacefully, we will all be called upon to let go of everything."
---zen monk Doshin, giving a teaching in Boulder, CO

"All compounded things are impermanent. Strive on with diligence for your liberation."
---the Buddha's final words

"It's only life, after all."
---the Indigo Girls

"He is just away."
---epitaph on the tombstone of William Henry Brown at the cemetery where Carol was cremated

"Short term goal: Get back home."
---one of the last things Carol wrote in her notebook (hopefully, she is on her way now)

Carol's death was an especially dark cloud, yet there have been some wonderful silver linings as well. Yin doesn't go anywhere without her brother Yang.

The outpourings of love and testimonials from Carol's friends were a balm for her suffering and helped her mother accept her daughter's death a little better. Even when Carol could no longer respond, we continued to hold the phone up to her ear so that friends could pass on their well wishes and heartfelt goodbyes. It was a very moving process.

Another silver lining is that Carol's mother and her other daughter (Carol's sister) are now on speaking terms again after many years of estrangement. Their communication is still very tenuous and often quite strained, but at least it's a start.

For me, this whole experience with Carol has provided many opportunities to learn and practice. While it's been quite challenging on many levels, it's also been an honor to share Carol's final chapter with her and her mother. Not only have I been able to explore service in a deeper way than ever before, but I've learned a lot about my capabilities and limitations too.

When I first saw Carol's tumor, I couldn't imagine getting near it. But after a few days, I got used to its look and smell and was able to clean and dress it. (Emptying and changing her colostomy bag was actually quite mild in comparison.) Us humans are so adaptable when we give ourselves the chance. Flexibility---of the body, mind, and emotions---is an important aspect of liberation philosophies.

As for my limitations, it became quite clear that I'm not very good at balancing in my own needs or setting healthy boundaries. I'm too much of a "yes man" and I continually let myself get stretched beyond my mental and physical energy reserves.

And once again, I've been given the opportunity to face the Big Daddy of all fears----Death. (Albeit vicariously, thankfully!) While the fear of death may not seem so obvious in our lives, I feel that it underlies a lot of what we do, from social interactions to work issues to even procreation. I realize that those are some pretty broad areas, but I know there are some psychologists and anthropologists who believe that the fear of death is the motivating factor for everything we do. For example, many of our social interactions can be described as herd instincts based on primal survival programming.

As I mentioned in my last entry, I'm not exactly sure what to learn about death and my fear of it. Perhaps just that I should continue to try to accept them both. (But if anybody else dies around me, I just might call this whole walkabout off!)

This whole episode has also served to remind me how dear my family and friends are to me. Life is tenacious, but it is also fragile. It has become ever so clear how deeply I value the beautiful and wacky souls who are my family and friends. I am very blessed. 

One of the nicest silver linings for me has been getting to know Carol's mother, Maria Teresa. ("Don't ever call me just 'Maria'.") Gracious, sophisticated, and witty, Maria Teresa exudes an Old World charm that demonstrates her upbringing in the aristocracy of Mexico. She had a career as an international diplomat, but feels her era has long since passed. She's also had "five husbands". (She never actually married the last one, a relationship of eleven years.)

At 87 years old, Maria Teresa still has quite a strong constitution, but her eyesite, hearing, and memory are starting to decline a bit, so she needs a lot of support, especially during this chaotic past month so far from her home in Seattle. I escorted her most places arm-in-arm, and we've spent the last few weeks together virtually 24/7. I finally saw her (and Carol's ashes) off on a flight back to Seattle this past weekend. To be honest, it was a big relief, but I will miss her too.

Amidst all the stress and challenges of caring for her dying daughter, Maria Teresa and I became quite close. It's been so painful for her to watch her daughter die and be so far from home and family and friends. I tried to be supportive, but there really wasn't much I could do to allay the grief and emptiness she is feeling. She is a strong woman and she will make it through all of this, but it's going to be a painful process that will take some time.

Rachel, another volunteer caregiver, has been a real breath of fresh air for both of us. Besides being a wonderful emotional support for Maria Teresa, she also helped us take some much-needed breaks. Carol's care entailed a lot of standing, and one of Maria Teresa's toes began to bleed from her uncomfortable designer shoes, so Rachel took her to buy a more comfortable pair. Another day she took her for a haircut. The day after Carol's death, Rachel and I accompanied Maria Teresa to a Catholic mass. Later, we all enjoyed a beautifully blustery evening at the Redondo Beach Pier where Maria Teresa finally got to see one of our famous Southern California beaches.

After Carol's cremation, I took Maria Teresa to some of my favorite spots in Santa Monica and Venice. We started with a stroll in Palisades Park along the bluffs overlooking the beach. I felt Carol would have enjoyed the walk too, so we sauntered along, Maria Teresa on one of my arms and the urn of Carol's ashes in the other. We explored Venice in the same way and Maria Teresa was enchanted by the lovely canals and enjoyed the Bohemian boardwalk too. And of course no tour of Venice would be complete without a visit to that giant sculpture of a clown in a ballerina tutu above the entrance to the Long's pharmacy.

All this time that we've been caring for Carol together, Maria Teresa has been a bit incredulous that I have actually been living a homeless lifestyle. So I also made it a point to show her my alley sleeping nooks and even the spot in Palisades Park where I was ticketed by the police. It looks like someone else may be using my Venice niche since my cardboard insulation has been removed and a ratty old carpet has been thrown down instead. We'll see what's up when I head back one of these nights.

And of course all this time I've also been receiving the benefits of a roof over my head, access to a hot shower, and a full belly. We even had a great time at the kung fu fantasy film "Forbidden Kingdom". (I was looking pretty conspicuous in my "kung fu outfit".) What more could I ask? Well.....how 'bout a bike?! Maria Teresa decided that she would buy me a bike, so she has arranged for me to get one with my chess buddy Rob this coming weekend. Rob's sister is coming out west soon and he will need his bike back from me for her, so Maria Teresa's generous gift will come at the perfect time.

So yes, Maria Teresa is generous, gracious, and charming. But, like her neon red dyed hair, the rest of her is pretty feisty too. In fact, she can get downright cantankerous and quite imperious. She's used to getting what she wants. It's the dark side of her aristocratic social status. (Yang doesn't go anywhere without his sister Yin.) And man, can she ever push my buttons!

As I've already mentioned in a couple of previous entries on conflict ("Openings and Closings" and "Degrees of Separation"), these challenging situations are a great opportunity for practice. What better way are we to become free of getting our buttons pushed than to face these very situations? How I would love to be immune to the slings and arrows of outrageous criticism and respond instead with unconditional peace and compassion.

But I still fail almost every time. I don't always react outwardly, but inwardly I am still reacting. And after a while of this dynamic, it can build up inside me until it comes out in inappropriate ways. One time I'd finally had enough and blew up at her, telling her how rude she was. While it did make her stop and reflect on her behavior, and she even apologized later, it was still not an appropriate response from me, especially to a grieving stressed-out mother whose daughter has just died. The ideal would be to respond compassionately and skillfully, unaffected by her tirades. I'm a long way from that. It's been so humbling to see my reactions, to run head first into my limitations.

But if I clearly reflect upon my responses, I have to admit that there has been some dramatic improvement:  I used to fail 99% of the time, but now I only fail about 98% of the time! I've doubled my success rate!

And hey, I'm an optimist-----the glass ain't 98% empty, it's 2% full!






"Ideas you may believe as absurd ultimately lead to success!"
---my fortune cookie at the Bamboo Restaurant buffet

"If you continually give, you will continually have."
---Maria Teresa's fortune cookie


Maria Teresa: "My father was the last of 21 children."
Me: "Ah, the Catholic Church..."
Maria Teresa: "No. They didn't have television back then."


Me:
"Let's watch 'Harold and Maude'! Woohoo!"
"Yes, I call it praying to the Goddess." (responding to Maria Teresa's question if I am allowed to meditate on women)
"And laziness is the father." (replying to Maria Teresa quoting the proverb "Necessity is the mother of invention." A few examples of the ingenuity of laziness: microwaves, TV remote controls, and blow-up sex dolls.)


Maria Teresa:
"Why thank you. I laid them myself." (after I complimented her scrambled eggs)
"Just enough time to make a baby!" (regarding me becoming a monk nine months ago)
"You are afraid of nothing except only one thing: commitment."
"I promised never to open my legs again!" (an oath made after each of the painful births of her three children)
"I prayed to God to help me be less critical, but he didn't listen to me."
"No one needs what they do not already have."
"You are no monk. But you are a very nice man. Just don't stab me tonight in my sleep!" (my response: "Don't worry, I only have a Swiss army knife. It would take a while to kill you.")
"The priest was young and handsome. What a waste." (regarding the priest who gave Carol her last rites)