Do I Want to See Tomorrow?

The Diving Bell and the Butterfly is a cruel film.

If I should get totally paralyzed and lose my independence, do I want to live? If I have a choice, what would I do? I thought it was no brainer. I would certainly choose to end my life.

Then, my friend, Maria, was diagnosed with ALS. It is a cruel disease. She had been independent and lived alone. She didn’t have close family except for her elderly mother. She lost her mobility quickly and became dependent on friends. Within 6 months, she was admitted in a hospital and had to make a decision. She had to choose. If she chooses life prolonging measures, she would be bed-ridden for the rest of her life, which she wouldn’t know how long, and would have to depend on public assistance. She wouldn’t be able to move, eat, nor talk. She would have to wear a diaper, breathe through a respirator, be fed via a gastrostomy feeding tube… All of us, members of volunteer care team of her friends, thought it was no brainer. Nobody would be able to take care of her forever. One of her friends had a mother with ALS. She begged her mother to choose to live even in locked-in condition and she now regretted that. It’s cruel, she said.

Maria couldn’t make a choice for a long time. Eventually, she chose not to. She was admitted to a hospice and passed away peacefully in a couple of weeks. (So I was told.)

It’s no brainer, isn’t it?

It was until I heard a story about a nurse. I don’t remember where I heard or read, but it totally changed my perspective. The story was told by a husband of a nurse, who became paralyzed or immobile. When she was healthy, she had always told her family she would choose not to receive any life-prolonging measures.

She once happened to be at the scene of a serious accident. The injured person needed medical attention. As a nurse, she could tell he would surely be fully paralyzed, worse would stay in coma, or brain-damaged, and for a moment she hesitated to give an assistance to save the life. Of course, as a nurse, she provided necessary help and that person lived, with the predicted consequence. Since then she thought about her moment of choice again and again, and she concluded that she wouldn’t want to live in that condition.

So when it was her turn to choose, her husband and her children were sure that she would say no to life prolonging measures. She didn’t and they were surprised. They respected her choice and took care of her for the next several months.

Then, one day, finally she said it was enough.

What her husband said hit me hard. It’s not a question of if you want to live. It’s a question of if you want to see tomorrow. It’s not that she wanted to live in that state of being for the rest of her life. She just wanted to see tomorrow. She wanted to see her husband and her children smile tomorrow. She wanted to see the sun rise tomorrow.. She wanted to feel the air, she wanted smell the rain, she wanted to feel the warmth of sun, tomorrow.

Do I want to see tomorrow?

When I am seriously/clinically depressed, tomorrow does not exist. I am in a timeless state of pain. I become pain. I desperately search for the way to stop the pain, which lasts forever, because time stops when I am in major depression. We only are in now and here in hell. (That’s quite zen, isn’t it? ) So only thing I can think of is how to stop being myself. A depressed person doesn’t have tomorrow. That’s the tragedy.

So I constantly ask myself, ‘Do I want to see tomorrow?” And I am glad my answer was yes yesterday.

Hope could be Toxic

Hope is an imperative if you live in Ukraine now. Hope is an imperative for our democracy. Hope that it will get better is an imperative for that tormented kid in the school.

However, in some case hope could be toxic. Hope leads to expectations. Expectation could lead to disappointment and sense of loss, again and again. It is actually cruel to give somebody bedridden with ALS a hope to be able to walk again, at least at this point of time when no definitive cure is known.

My friend, Maria, had been losing her functionality every day. Every morning she woke up to find she couldn’t do what she had been able to do the day before. She knew she would not walk again, but sometimes she just desperately grasped a flicker of hope and dreamed that she could dance again. She wore her favorite pair of shoes when in a wheelchair for rare occasion to get outside for fresh air. I didn’t have any words to console her at that time. Any suggestions of hope that it would get better were cruel even when she felt a little better than the day before.

Then I was diagnosed with Meniere’s Disease. I’m grateful that it was not ALS, but Meniere’s is a bitch from hell. Because of sudden and unpredictable debilitating violent attacks, which render the afflicted totally incapacitated for hours sometimes days, Meniere’s suffers loose their functionality. Three years ago, I started have violent attacks. The life I expected to have was no more because I couldn’t do what I had been able to do. I sought for “cures” one after another. Every time I tried something, the violent attacks seemed to subside. And I had a hope. Then Boom. Another attack and I found myself lying on a bathroom floor violently vomiting. I had to cancel my plans and I was afraid to leave home. After a year of turmoil, I found a trigger, or so I thought, and I was in remission. I thought I was cured!

After two years, it came back. The moment it hit me, I knew I should change my mindset. No expectation, just live now. Regardless whatever happens tomorrow, I am living with this condition now and this is my state of being. It is the only reality. It doesn’t mean I don’t make any effort to control Meniere’s disease. I’ve been working much harder and am much more focused to change my life style which might have caused Meniere’s Disease. But I’m mindful not to expect anything. Expectation is about something in the future, which might or might not exist. I don’t want to be disappointed just because I lose what I might not have anyway.

I have been feeling much better this week with less frequent attacks and less severity, but I don’t expect I’ll be better tomorrow and will be able to travel in May. I don’t know how I will feel tomorrow. Yes, I am human and every morning upon waking up, I hope and hope my Meninere’s disease miraculously disappears. Then the tell-tale sign of tinnitus or vertigo comes back to tell me otherwise.

So don’t tell me it will get better. You don’t know and I don’t know. If you can’t tolerate witnessing my suffering, just hold your discomfort and say “I’m sorry. It must suck to have that condition.”

If I feel good, I enjoy the day. I live one day at a time. And basically it is how everyone should live. One day at a time.

Weight Belt of Gold

A woman and her husband were on a boat. She saw her friend struggling in the water to be afloat. Her nose was barely above the water. She reached out and tried to grab her friend’s hand. Her hand was slippery and she was too heavy.

Her husband noticed the drowning woman wearing a weight belt. The belt was loaded with gold. It was clear that the weight of the belt was pulling her underwater. “She needs to ditch the belt!” The husband said. The drowning woman would not let go of the belt of gold.

The boat was small and had no room for another person. “I have to rescue her,” the wife said. “She needs to ditch the weight first,” the husband said.

This was not the first time they saw the woman struggling in the water. This was not the first time the wife reached out to rescue her friend. The drowning woman had never let the weight belt go.

She probably could swim, only if she didn’t have the weight belt of gold pulling her down.

“If she let the weight belt go, there are many ways to help her to swim to the shore,” the husband said.

When I was married to a passive-aggressive narcissistic husband, I moved out of our marriage three times. Every time I moved out, my ex found a way to get back and I let him back. On the third time, I finally ditched my weight belt of gold. Looking back, the weight was not made of gold. It was my fear of unknown, insecurity about living on my own, and fear of walking my life by myself. Once I ditched the weight belt, I found I could swim first tentatively and then very well.

We can't rescue somebody who wants to hold onto the weight belt of what they think is gold, knowing that it is the cause of their distress.   

It is very difficult to find ourselves helpless in the face of suffering of our friends. We tend to try to rescue them. It might be more helpful to sit with our own sense of helplessness. When we befriend with our own helplessness and learn to tolerate it, then we might be able to be compassionate in the face of other’s suffering without rushing to rescue them.

A Fat Collie

When and where I grew up, dogs were just dogs: brown dogs, white dogs, black dogs, black and tan dogs, etc.  The smallest were Shiba; the largest were Akita and in between there were just ordinary dogs.  Only affluent westernized families had fancy pure breeds.  There were no designer dogs, just mutts.   Some belonged to families, others just roamed around.

I adopted a large senior dog from a local Humane Society a year ago.  He had a funny face with a long muzzle.  The humane Society people told me he was a Collie mix.  All the official papers said he was a Collie mix, so I registered him as a Collie mix.

Weighing nearly 90lb he was a super obese Collie.  He was slow and low-key and walked like a sumo wrestler.  He chewed things obsessive compulsively.  He was stubborn as hell and didn’t act like Lassie at all.

“What kind of dog is he?” Since I got him  I was asked numerous times by strangers.  I say, “Mutt,” and “Do you know what kind of mix he is?” people asks.

My dog seems to have a distinct feature, which is somewhat familiar but not distinct enough for many people to put a finger on.  That makes people wonder what he is.  Eventually a consensus view emerged.

Spuds MacKengie a.k.a. Budweiser Dog on steroid.

I finally succumbed to the temptation and ordered a DNA text kit on-line.  I mailed it out expecting a “happy family”- like result: a little bit of Collie, a little bit of Pitty, maybe a German Shepard or two.

The result blew my mind.   His (probably) dad was a pure bull terrier.  His grandparents were bull terriers; his great grandparents were bull terriers.  He was half bull terrier.  The other half was ambiguous, with a miniature bull terrier and a hound in his ancestry.  There was not a drop of Collie in his gene pool!

He wasn’t an obese Collie mix.  He was a supersized bull terrier mix.   He was not fat.   He was muscular.

One day I noticed a lady staring at him.  She came up to me and asked, “Bull terrier mix?”  I said, “Yes.”  “Stubborn?” she asked.  “Yes, very” I said.  She nodded knowingly.

That made me think:

What is he?  Is he a fat lazy Collie or a muscular bull terrier?  If I didn’t know his DNA makeup, he would be still a fat Collie.  I might have put him on a weight loss program to keep him healthy.  Actually he had spent his entire life as a Collie mix with his former owner.  Or maybe he is just a heavy stubborn dog with a long muzzle.

Then what am I?  I could be fat or muscular.  I could be feminine or masculine, depending on the model the society/individual applies.  Or maybe I am just a human being with olive skin.

 

 

Impermanence

forest

The current of the flowing river does not cease, and yet the water is not the same water as before. The foam that floats on stagnant pools, now vanishing, now forming, never stays the same for long. So, too, it is with the people and dwellings of the world.

Excerpt from Hojoki: The Ten Foot Square Hut by Kamo No Chomei.  Translated by Anthony Chambers 2007

I learned this old prose in high school in my old country.  It’s like a Shakespeare monologue.  You need to know by heart.  It’s all about Impermanence.  Impermanence was embedded in my old country’s collective unconscious.  It was a norm.   It is how it is.

Recently I was watching a kid’s educational TV program of my country.  It’s like Sesame Street, to teach children how to read, count, and have fun in the language.  And I heard kids reciting this prose.   My jaw dropped.  They teach preschool kids Impermanence?   Wow…

As born and brought up in a Buddhist culture, I’ve never questioned Impermanence.   It is how it is.  And still I often wander away, falsely believing otherwise, believing it is the same water as before.  And again the universe reminds me that I am the foam that floats on backwaters.

The truth will set us free.

Hands of Kuan Yin

“I just might be able to walk again,” she said in a barely audible voice. “I know,” I said under my breath, feeling every details of her tarsal bones. She knew she would never and I knew she knew.

Her feet permanently dropped at the ankle like a long stem rose brought home the night before sadly drooping in the morning light, making me feel slightly guilty of something which I didn’t know I did or I didn’t.

She wanted to have them dorsiflexed. “My toes stayed curled up in my boots today. They want to be stretched,” she said. I held her foot and slowly reproduced walking motion.

“When I move your foot, just imagine that you are moving it by yourself,” I said.
“My brain is not sending correct signals, isn’t it?”
“Your brain is sending signals all right. It is your nerves that are not delivering messages to your muscles,” I explained. “It’s like a highway with the southbound lanes closed. You can take a cab to JFK airport, but there are no cabs to take back to Manhattan…” I caught myself walking into the dangerous territory of reality. Your motor neurons are dying. You can’t rehabilitate dead neurons. That was what I didn’t say.

“When you want your feet on the wheelchair footrest, your friends place them on it for you, don’t they? Your mind sends a message to the feet to move and your feet are placed on the footrest, even in the exact way you want them to be placed, with the heels of the boots on, not off, the footrest. It’s just the same as your doing by yourself. Your mind moved your friends’ hands.”

“I’ve never thought that way,” she said and started to cry in silence. I’ve never thought that way either till now.

Her feet, which didn’t have to carry her weight any more, were impeccably soft and ice-cold at the same time. “Nirvana,” she sighed when I jostled her foot in my hands. Her leg muscles held no tension. There were no muscular defenses to disarm. I remembered her once athletic legs. With her nerves failing to fire, her muscles were wasting away. “Floppy, aren’t they?” she kept reiterating. Flaccid they were. Her immobile legs and feet were still cold as if she had been standing on the winter edge of the water, letting the surf sweep cross her legs, every wave slightly higher, taking away her body heat, higher and colder until it touched her knees. The frigidity had been steeped deep in the bones, refusing to thaw.

I am palpating a skeleton, I thought. Through the thin layers of flaccid tissue my fingers could clearly see bones and tendons. When I touched a tiny muscle behind the knee, she said, “I didn’t know it would feel so good to be touched there. I would never have known.”  You would never have had to be aware if your legs didn’t fail to move, I thought.

She moaned. “Is the pressure too much?” I asked. “No. It just feels so good,” she said and then asked, “Why does it feel so good?”

“Your body is ready to receive. It is difficult for most of us to surrender to receive. I feel Ki is flowing into your body effortlessly,” I said. “Most people resist and block the flow, you know.” I was making up as I went, searching for words she wished to hear. Or was I verbalizing what I always knew?

“Yes, I can feel Ki flowing in,” she said, and after a pose, continued, “Don’t you think I just might be able to…”

She wasn’t talking to me and I didn’t say anything.

Her feet and legs were finally reclaiming warmth, like the frozen ground moistened by the gentle rain. She hadn’t talked for a while. She was drowsing off.

“I fell asleep,” she said.
“It’s O.K. to fall asleep.”
“I don’t want to. I’ve been fighting hard not to.”

I didn’t understand. It’s the whole point of getting a massage, isn’t it? To relax and drift into sleep away from the tension of waking life, to yield to somebody else’s hands, allowing somebody else to take care of you.

“I want to remember how good I’m feeling now. If I fall asleep, I won’t remember. I don’t want to miss even a moment of it.”

The muscles had transformed themselves into a purely sensory organ, responsive to external stimuli, while unable to react. Like a legendary musical instrument, she responds to my touch and she is listening to the music that she only can hear. Her intact sensory nerves respond to the touch with the ever-changing combination of pressure, temperature, rhythm, direction, slow, fast, light, deep, circle, straight, faster, lighter, nerves firing and resonating.

What a state of being. She had a pure awareness of the body and I was resonating together with her.

The hands of Kuan Yin (観音)touched me through her.

The Japanese word for “treatment” literally means laying on of hands.

RIP my friend,  July 29, 2011.  You were a warrior.

Living in the Present Moment

August1

One’s Journey often starts before one knows it. My friend, Maria, became aware of weakness in her abdominal muscles in the summer of 2010. She didn’t know it was going to be her last summer. She was diagnosed with ALS, aka Lou Gehrig’s disease, in December 2010. Every summer, I think about how she lived the last year of her life and contemplate on the meaning of living in the present moment.

This could be my last summer.
This could be my last August.
This could be my last sunset.
This could be my last breath.
This could be the last time to see you.
I love you all.

Join me, if you would like, to be fully present in this moment of our life, in this summer, in this August, on this day, at this time of the day… It only takes a moment. And Breathe for my friend. Thank you… I love you all.

A Fridge in the Backyard

I don’t watch the reality show about hoarding because I have more than one person in my life who hoard, and I have more than one friend who have more than one person in their lives who hoard.  There is nothing entertaining about hoarding.

My father was more than frugal.  It made sense when we didn’t have much.  He saved things and stuff for a time of scarce.   He fixed things with the stuff he collected and saved.  He didn’t allow us to throw away things.  I didn’t understand the logic behind keeping broken fridges and TVs in our backyard, though.  “It’s good for a tool shed,” he said.  The rusty old fridge is still there.  It doesn’t look like a fridge anymore.  I don’t know if there are tools inside.

We were really lucky because he didn’t save newspaper and magazines.

I used to travel back and forth between the U.S. and my old country schlepping a large suitcase.  After years of airline check in baggage treatment, it cracked.  I got a new one and asked my mom to get rid of the beaten up one.  When I visited them a year later, I found the broken suitcase in my parent’s bedroom.

“What the hell is it doing in your bedroom?” I asked.  “Your dad didn’t let me throw it away,” my mother said.  My father doesn’t like to travel.  He doesn’t even like to go out of the county.  Where did he think he was going with the broken suitcase?  It was not about being frugal anymore.  They had to have storage sheds built in the backyard for the stuff… three of them.

Inside the house, my mom managed to contain his madness in one room.  It was filled with empty boxes, toilet paper rolls, tissue paper boxes, and bars of cheap soap.   “Why did you buy so many bars of soap?” I asked my mother.  “They were on sale,” she said. “Your father drove all the way to the shopping center to buy them.”   I stared at piles of soap bars probably enough to supply for three life time, and said to myself, “How long is he planning to live?”

When I stand and stare at the room full of toilet paper rolls, tissue paper boxes, and bars of cheap soap among other stuff, I see my father’s fear.  I feel trapped.  I lose the will to change.  The fear steeps out and penetrates into who I am.

I know it is not my fear, but I need to be aware of its presence.

Universe provides what one needs.  My father lived in the same house for the most of his life, creating fortress with stuff, a fortress for him, a prison to me.   I moved many times, one time across the Pacific with a single suitcase, several times out of broken relationships.  I was forced to shed stuff like a stray dog.  As soon as I settled in a new place, usually smaller than the one before, I started accumulating stuff.  Every time I moved, I had to choose what should be part of my life and what should not.  It served as a priceless mindfulness training.  I still accumulate stuff, while I know my fear.  Universe doesn’t have to force me to move anymore just to remind me to choose.  Once in a while I do it voluntarily, especially when I witness somebody else’s fear in their space full of stuff.

Karma and a Tiger

An Interpretation of Karma based on a supposedly Japanese story quoted by Joseph Campbell in The Power of Myth.

A samurai was murdered by another samurai.  He was the head of family.  The heir had to avenge his father’s death and kill the murderer to restore the family honor.  The young son set off to search the murderer, who was on the lam.  It was a long and difficult journey.  Until he could right the wrong done to his father, his family would remain in limbo in samurai hierarchy.  He did not have any source of income.  So he degraded himself into a laborer, a hired help, and a peddler –these jobs were in lower caste in those days –to support himself while pursuing the enemy.  Years past and finally, the not-so-young-anymore man found the murderer of his father.  When he confronted the man face to face, he became aware of his own hatred toward the man.

Upon being aware of his feeling, he walked away without killing the man.

The father had some kind of karma that led to his murder.  The father passed on his karma to his son, while the other samurai now bore the karma of his own as a murderer.   The son paid for his father’s karma by suffering and humbling himself to pursue the murderer.  At this point, he is just an executor of the law of samurai social structure.  However, if he kills the murderer with his own anger and hatred in his mind, he generates his own karma, thus, the chain of hatred keeps on going.  The key word is Awareness.   That’s the way to avoid reincarnation with karma attached.

What would the young samurai do after that?  Since he didn’t follow the rule, he would remain outcast from his original caste.  There is an opening for a “shift”.  He could leave the samurai caste, so that the old “rule” would not apply.

A tiger kills prey to survive.  That’s what a tiger does and is.  Killing itself generates no additional karma for a tiger.  It just keeps him being a tiger.  That’s his karma in a larger context.  If he becomes aware and stops killing prey, he would die, because it means he rejects his being a tiger.  In his next life, he might find himself in a different realm.

I don’t know.  Just a thought.   And I don’t believe in reincarnation, anyway.

Breathe

grandcentral

What would you see if you were from another country or planet?   You studied English so you understand what it says, but you are not familiar with American culture.  What would you see?

I admit I like post-apocalyptic zombie movies, because I know they are not real.  I enjoyed the campiness of Zombieland.  I felt for Tallahassee (Woody Harrelson) craving for Twinkies.  My brain is functional enough to place what I see in Zombieland into the “Entertainment” box, not the “Real Danger” box, so my limbic system a.k.a.paleomammalian brain won’t be activated.  The mayhem in the movie won’t register there as DANGER.

I’ve  spent most of my adult life in NYC.  I’m used to see soldiers in fatigues with big guns in the Grand Central Terminal.  While It shocked me when I first saw them in 2001, now it’s an everyday thing.  It won’t alarm me.

But these images are disturbing.  I know it is an advertizing campaign for a T.V. show.  But “WHATEVER YOU DO, DON’T BREATHE” ?   As a massage therapist/believer of integrating body-mind awareness,  I constantly tell people to “BREATHE.”  I once placed postit notes with “BREATHE” on them randomly in my apartment to remind myself to stop and take a mindful breath.

The Grand Central is not the most breathing friendly place on earth.  It’s noisy, stinky, and overstimulating.  Living in Manhattan I have learned how to shut down senses to survive and stay sane.   So we don’t give a darn for those images posted on the walls of subway pathways.  Still this managed to stop me and made me think about it.

So I guess the campaign was successful, though

I rather would like to see a poster reminding me to stop and breathe.

No, I’m not planing to watch the show.