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.

Sudden Change of the State of Being

Our state of being changes every so often. Job loss, divorce, death of a loved one, etc. Most of the time, it involves one kind of loss or another. If you place a high value on your work, job loss is devastating. If you are used to certain kind of lifestyle, change in financial situation could hit you hard.

I lived long enough to experience many of losses, which brought me sudden change of the state of being. Every time, I fought against it trying to hang onto what I had. I lost my job of 20 years. I lost my marriage. And the hardest was losing everyday function due to incurable health issue.

Three years ago, I developed Meniere’s Disease, an incurable disabling condition. Though it is not life threatening, MD had totally changed my state of being. There were so many things I couldn’t do anymore. I fought against it and suffered, lamenting over the lost functionality.

Then somehow it magically disappeared after 1 year. For the next 2 years, I was as active and functional as I used to be. I had plans for my life, my new career, my new adventure…

Then it came back. I’m basically homebound and often bed ridden. This time, I don’t lament over the loss of my life I expected to have. At this moment, this is how I am. I just need to adjust my priority.

Acceptance of current state of being could relieve you from suffering over the loss.

It still sucks to have Meniere’s Disease, though.

Throat Chakra Story: Voice

Voice

“If a tree falls in a forest and no one is around to hear it, does it make a sound?”

When the little voice learned that nobody would come running to give her hands when she fell, she stopped asking help. She stopped even crying. When she cried, they came running not to help. So she locked herself in a dark small cave and waited silently until they forgot about the little voice and left. In the cave her hurt turned into anger and the anger pulsed and grew into fury. The angry voice was big and strong. The little voice couldn’t speak up for herself, but the angry voice could scream and yell to protect others. When the angry voice spit a fire, it was always for the little voice in other unheard people.

In my original family I had never learned to make a conversation because nobody heard anybody and they just talked at each other. “Conversation” was like throwing rocks at each other. Uttering one word could start a full-blown war. I’ve learned to make a Molotov cocktail. The louder and the more violent your voice are, better chance of survival.

My brother took up a different strategy, learning from how I fought. He was a talkative child, but he stopped talking to his parents at all. When I was in 30s I confronted my father and told him what he did and what he said damaged me. It was not a conversation. I threw one Molotov cocktail after another at him. The next day, he didn’t come out of bed. My mom forced me to apologize for yelling at him.

“Did I say those things to her?” My mother said to me that he asked her. He didn’t remember. He didn’t remember his words, which denied me of having a normal teenage girl’s life. In his mind, he was a loving father. I learned unless I engaged the person in a conversation, throwing a Molotov cocktail at them wouldn’t work.

About 15 years ago I was on a subway train at night. A young black guy came into the car with a cart-full of stuff. A burly white guy started to harass him, calling him welfare thief and such. The young guy remained quiet and sat still. The white guy kept on harassing him. I felt a red hot anger bubbling up inside of me and burning my throat. I knew yelling at the burly guy would not help the situation. I could feel the young guys anger in my guts. I thought of standing up and sitting between them, but if I provoked the burly guy, it could have the young guy involved. That was not good. My station was coming next. I stood up and walked to the young guy and stood in front of him. “Sir, may I shake your hand?’ I said to him. He looked up at me with a puzzled expression and then he extended his hand. I shook his hand and he smiled. My station came and I got off. That was the most powerful voice I ever have had.

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.

Everybody wants to have a Jedi Power

In the last Star Wars film, I saw the heroine lay her hand on a wounded creature and healed it. It was an a-ha moment. “That’s what everybody wants to. They wants to have a Jedi power,” I said to my friend.

I often spend time with those who are in hands-on “healing professions.” I am also a licensed massage therapist, because I had this urge to lay hands on people who were suffering. When somebody is hurting, I wanted to stop it, heal them, and make them feel better. I felt my hands aching, desperately craving to touch the hurt, eager to give “healing energy.”

Then I got a chronic “incurable” illness. For about a year, I suffered from debilitating symptoms. Fortunately, currently I am in a remission. And I stopped offering an unsolicited healing works to people who suffer from other chronic “incurable” condition.

If you have a cluster headache, I know I can’t help you. I’m happy to give you a foot massage if it will help you to relax. But I can’t heal a cluster headache.

And “healers” would still offer to lay their hands on you, as if they couldn’t accept their own powerlessness. It is difficult to be present in the face of pain and suffering without being able to do anything.

During the period I suffered from severe symptoms of Meniere’s disease, many people laid hands on me, trying to heal. None of them stopped or eased my suffering. I just had to endure and wait for the Meniere’s attacks subside. People who had never treated Meniere’s disease offered one kind or another treatments. People gave me pieces of unsolicited advice as if I didn’t know how to google. When people offered energetic healing of one kind of another, I felt obligated to tell them it made a difference. I didn’t feel better. Meniere’s is a bitch from the hell. Only the sufferer knows how bad it could be.

I believe they had good intentions. However, I am not sure if it is for the sufferer or for my own being a Jedi fantasy when I offer a “healing” touch.

So I stop and think if I really know how to help the person feel better, even by my mere presence to witness the suffering, before offering to lay hands.

I don’t have a Jedi power and I don’t have to have a Jedi power to be compassionate.

Change of State of Being

Once in a blue moon, we encounter a situation that changes our state of being. Who I think I am won’t fit who I actually am now. The familiar labels ceases to describe what I am. It is disorienting.

Two versions of me are walking overlapping each other, with slight dissonance, which gradually becomes noticeable, as if we were a ghost of each other, trying to head to different direction, further and further apart from each other, while not being sure who is the past and who is the present. And most importantly, who is the future to be.

So I sit and stay still for a while to bring the present to the center. It’s not easy. My everyday routine is constructed based on who I was. My friends know me as a “powerhouse,” which I might not be anymore. The lifestyle I expected to pursue based on who I was might not be feasible.

I think of my friends who were forced to change their state of being. My once highly functional friend developed DID (Dissociative Identity Disorder) and has become immensely dysfunctional. It was a drastic change to her state of being. However, I became friends with her long after she had developed DID and for me it is how she always is. I couldn’t fathom her sense of loss. Another highly active friend developed ALS and was immobilized. I don’t have a word to describe her loss. Everyday, she had to adjust her expectation according to the function she lost that day. Time and time again she had lost her grasp of the present state of being and believed she could dance again.

I developed Ménière’s disease and had multiple attacks while I was working out of state. Lying in fetal position in the cold bathtub alone, vomiting, gagging and shaking, not knowing if I could go to work in the morning, I was afraid. I was afraid to be on board to go home. Then I was afraid to leave home. Several of my options for the future course of life were eliminated in that bathtub in a motel room in a strange city.

The highly functional, reliable powerhouse is no more. If the attack comes, I will become a puddle of vomit on the random floor.

The friend with DID and I exchange the notes over lunch and mourned for who we were together. She said my story was very familiar. She looked like she was comforted by the fact that I finally got at least part of how she felt. “I am not a kind of person who cancels appointment at the last minute,” I said. “Now, I have to if I have an attack.” “Neither did I,” she said. After the illness stroke, she, afflicted with multiple disorders, has been a constant no-show. That’s always been who she was to me.

While ALS, DID, Ménière’s, etc. induce drastic changes, aren’t we always changing? Probably I need to adjust my idea of who I am to my state of being every moment.

Sometimes, I see men and women walking with their ghosts. Old women dressed up in teenager appropriate garbs. I don’t judge how they dress. It’s their frozen look trapped in the ghost of who they were that gets me.

Our state of being is fluid. Let it flow and dance with life.

P.S. My dog, Simon, loves to play fetch. One day he broke his toes and had to walk on three legs while the broken one was in splints. After a couple of days, he was running on three legs as happy as he had been. Dogs adjust to the present reality so fluidly without dwelling on the loss. Dogs are amazing. They are my Zen teachers.

Ordinary People

“What do you want to be?”  I asked my date.   We were just shy of 20 years young.

“I want to be an ordinary person,” the young man said.

“???”  I didn’t get it.  When you are a teenage boy or girl, don’t you want to be an outstanding, extraordinary, prominent person even when you don’t know in what.  Somebody but an ordinary person.

Several decades have passed since and I had a chance to see the boy again at a class reunion.   I told him I now understood what he meant by being ordinary and appreciated him for his wisdom at such a young age.

“Did I say such a deep thing?”  the boy, now a man in fifties, said.

I should have chosen this ordinary guy instead of a succession of overgrown permanent teenagers, who were exciting and extraordinary in not necessarily good ways as a partner.

I am not outstanding, extraordinary or prominent, but I think my life was nothing but ordinary.   After decades of turmoil, now I find myself living a very ordinary life with absolutely no drama.  And I am mostly content with my ordinary life as an ordinary person. Then once in a while, I look back and say to myself, “It was fun.”

It must be just a state of one’s mind.

 

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.

 

 

I will never see you again

1-IMG_0036Some occupations require us to remain on the bank and see the current of river flow. Teachers are the obvious one.  Kids come and go, come and go, never the same kid, but the life flows in front of their eyes continuously.  And the teacher him/herself never stays the same. Therapist might be another such occupation.

Whenever you are the one who remains on the bank, you will see the flow of the current.  One leaves, another comes, and leaves.  Seeing off people helps me to be aware that it was once a life time encounter with that particular person.  And it was once a life time encounter with that particular person I was.

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.   (Hojoki, Circa 1212)

I’ve been going to the same gym everyday for the last 2 and half years.  Trainers know me well.  It’s like a family.  I realized younger trainers were nomads. They come and they go.  I am the one who remains on the bank seeing them come and go.  It makes me feel sad when one of my favorite coaches leaves.  And I realize that I also was the one who came and went.

For the Boys

I am sad because I know I will never see you again.  I already miss you because I know I have missed the opportunity to know who you are and who you will be.

You say you might drop by when in the city.  I might happen to be there to see you coming down the stairs.

But I will never see you again in the way I see you today.

I see you moving out of the country as I did long time ago, with emotional devastation leaving behind, with anxiety and excitement in front of you.   Then, Young Man, you will be who you will be there in the land you have chosen even before I saw you for the first time.

Thinking about your youth and the path you are about to take fills my heart with a painfully raw love of life,  cruelty and grace of time, and preciousness of the moment: any single moment of my transient presence in your life.

You are not my child or my love.   You are one of the beautiful young men I happened to know.  (All young men are beautiful as all young women are.)  And I love you all as I love my child.

And I love who I was and who I could be at your age, leaving everything behind and flying out to the country to be my home.  I didn’t know I would never see her again.