Trauma Walking

The young woman walked straight to me and introduced herself. “Hi. I’m a survivor,” she said. “Hi,” I said.

It wasn’t a meeting for survivors of any kind. It was just a shamanistic drumming circle gathering. I was in a process of healing journey and was trying out many modalities. At that time, I was highly sensitive to other people’s emotional state and somehow my attention was habitually drawn to traumatized people’s energy. Even before she talked to me, I sensed a tightly wound vortex with thousands of black birds swarming against the dark sky and the vortex was walking toward me.

No, I don’t want to be sucked in that, I thought.

I was taken aback that the woman introduced herself to a total stranger as a survivor. I don’t remember if she said what kind of survivor she was. However, my mind interpreted as a child sexual abuse survivor. The fact she identified herself as a survivor made me think hard. She had chosen that word to define her state of being.

During the drumming, my attention was relentlessly drawn to the woman. No, I don’t want to be sucked in that, I thought again. I could sense that she was looking for a “hook” in people around her. She was looking for a survivor to share the vortex with.

After the gathering, I told my friend about the woman and asked, “Did I look like that?”

Do I look like that? Is a survivor my identity? Does that word represents my entire state of being? I had to think hard because I saw myself in her. Trauma walking, vulnerable and dangerous at the same time.

When there are predators outside of the room, we need to survive. Our sympathetic nervous system needs to be on high alert, like a tightly wound vortex. Once the predators outside of the room leave, we can unwind (deactivate) the sympathetic nervous system. For some of us, the predator is inside the room. We carry the predator with us.

After decades of therapy and numerous healing works, I don’t carry the predator with me anymore. I survived but I don’t define myself as a survivor. The trauma doesn’t define me.

You can’t clean with oven mitts on

“I was a slob,” I said, “I knew the drawer of the dresser was half open and I couldn’t close it. It must take nothing to close it, but I couldn’t. So it would be half-open for weeks, months.”

Mia’s younger sister, Norma, has been suffering Depression on and off for a while and occasionally locks herself in. Mia was planning to visit her parents and to stay at her sister’s place. “What should I do to help her?” she asked. She knows I have a clinical Depression and often asks advice from me for her sister. Mia is that kind of person who always tries to offer solutions to “problems,” to fix.

“I think I should tell her to stop taking medications,” she said.

“NOOOOO!” I said. “That’s the worst thing for a Depressed person!”

At one point, I felt so great and I stopped taking SSRI without consulting my shrink. (My shrink thought I had a hypomania episode.) I quickly fell into a state of Major Depression and didn’t go out of my apartment (except for bare necessities. I’m not agoraphobic. I just didn’t have the will to move.) During the three months, I was diagnosed with a variety of mood disorders and prescribed different medications, which made my condition much worse. Nothing stuck, well, except for the original straight forward SSRI. Eventually I came out of Depression organically and since then I’ve been on the same SSRI, currently with a minimal dosage.

“I take it for the rest of my life. I can’t risk having another episode,” I said. “It’s like you have a bad eye sight. You need to wear contact lenses just for functioning normally. Nobody tells you you shouldn’t wear contact lenses. You might fall into a manhole.”

“My sister doesn’t answer our calls, doesn’t respond to texts. We are sure she has read our messages… My elder sister thinks Norma is irresponsible. She doesn’t even care how our parents are doing..,” Mia said.

“It’s not that she won’t. I she can’t. Any contacts from others are threatening. When you have a migraine attack, any noises, any flash of lights would hurt badly. Phone calls and messages are like that. Especially messages to blame her or tell her to do something,” I explained. When I was depressed, every time I got a message, I felt like I heard a gun shot. Mia’s family bombards Norma with messages. “That’s the worst thing. I would feel like I want to cover myself with a blanket, in a fetal position,” I said.

“So what should we do?”

“Is she still seeing her psychiatrist?”

“I think she is,” Mia said.

“If so, just let her know you are there for her when she is ready to come out of the cave. Just send a message saying that you are thinking about her.”

Every time I talk to Mia about Depression, I am made to be aware how little “normal” people know how it feels. Many people around me have Depression with varying degree and we don’t have to explain to each other. We speak the same language of pain. It’s refreshing to realize it is not a universal state of being.

So I explained how I am when I am depressed.

“Norma is like that. She used to be very neat and tidy. But last time I visited her, her apartment was in a mess. She left dirty dishes in the kitchen sink. I thought she became lazy,” Mia said.

“It’s not that she is lazy. Depression is like having oven mitts on. It becomes very difficult to do anything with oven mitts on. Without them, it’s nothing to pick up a piece of scrap paper from the floor. With them, it takes tremendous time and energy just to do that. We see it and we know it’s there and we don’t have energy to pick it up. Then another piece of scrap falls on it, and another… Eventually we get buried in trash and can’t even move. That’s how Depression feels like.”

I don’t know if Mia understands. It’s damn difficult to clean with oven mitts on. So be compassionate to yourself. You are not lazy.

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.

Yayoi Kusama and One in Hundred

My high school bestie, Suki, now a psychiatrist and professor of psychiatry at a medical school, told me about the mystery of schizophrenia prevalence. In any society at any time, there are certain percentage of schizophrenic people. Since onset of schizophrenia is usually in early ages, the patients have less chance of making families and leaving offsprings. So if the cause is genetic, there must be less and less population with that particular genetic traits. However, there always are certain percentage of schizophrenic people. She wonders if there could be some evolutionary reasons, or some roles for schizophrenic people to play for human societies to survive.

Some says one in three hundred, others one in hundred.

I went to see Yayoi Kusama’s outdoor exhibition with my friend. Her works were pop and super fun with colorful polka dots. We were excited and having fun taking pictures of strangely out of place objects in the New York Botanical Garden’s serene setting.

There was a small indoor exhibition of her earlier work, including sketches and drawings of the “pumpkins.” My friend was reading the description and examining the drawings with keen interest. I started to “hear” things. I couldn’t tell what the voices were talking about. It was like multiple voices talking at the same time in multiple frequencies. It’s like listening to a radio with bad reception while you are driving in a mountainous area. You think you hear a word, then you hear just noise. The voices were trying to directly permeate my brain. “I can’t stay here. I’ll wait outside,” I said to my friend and left the room.

So this could be what they are hearing. Kusama’s drawings were transmitting codes. Only those who happens to have a matched receiving device with the correct frequency setting could hear the message. I couldn’t decipher her message of polka dots, but it was surely unpleasant. Polka dots morphed into eyes and they were watching me.

That was when I knew I could have been one in hundred. My brain could receive the codes.

My friend came out of the exhibition room. He was not affected at all and didn’t understand why I needed to leave the room. His brain doesn’t receive the codes…

Since there was a stigma attached to mental illness in my old country, I didn’t know until recently that two of my cousins were schizophrenic and had been hospitalized for life. They had been hidden from my family history. I also have a sister-in-law, who is schizophrenic. That’s too many in one generation. (None of us have children.)

I am glad that I could refuse to hear the transmission and leave the room. I think I dodged the bullet of one in hundred.

(By the way, my friend’s father was bipolar and he gets deeply affected by Van Gogh’s exhibition. I don’t. I guess he can read Van Gogh’s bipolar codes and I can’t. It’s interesting.)

Is it Illness or Who I am

My high school bestie, Suki, who is now a psychiatrist and professor of psychiatry, once told me about her young patient, who killed himself while she was away for a conference. She told me that he was doing much better in the last session. “It’s because he had already made up his mind,” I said. “He made peace. Once somebody made up his mind, nobody can stop it and I guess for that person the life was too painful and if so, I can’t find a way to tell the person to live.”

“But it’s his illness that made him kill himself,” Suki said. And I have been thinking about what she said for a long time. I am not suicidal per se, but have been thinking about killing myself since I was 8 years old. The thought has never left me. It’s just how I am. I have been on SSRI for almost 30 years on and off and after the last bout of major depression, I accepted that I needed to be on meds for life just to live normally.

I explained my friend that when I was in major depression, there were no line of demarcation between who I was and the illness, ie. depression. I am not in pain. I become pain. It’s not that I want to kill myself. I just want the pain disappear. I just want to have peace from who I am.

Fortunately, when I am in major depression, I can’t initiate any major action. I just passively exist with minimal action for survival. So I am not suicidal. I am now stable and am quite happy about my life. I can not be sure but It could get better as you age.

Then I got Meniere’s Disease. Meniere’s Disease is an illness. It is a condition I have. It is definitely not who I am. When I have an acute episode, I scream in my mind, “Kill me now!” I am in tremendous pain and suffering and I want to have it stopped. But I don’t wish to die because I know once I recover after 12 to 24 hrs, I will be my usual self.

On the other hand, I’m not sure if I could survive another bout of major depression. After being depressive for half a century, I sometimes feel tired. I wonder if the day would come when I feel too tired to keep on going. But it would not be because of Meniere’s disease. It would be because who I am.

To younger suffers of major depression, I want to tell you it could get better. I didn’t imagine I could have this peaceful life when I was younger and tormented. It could get better.

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.

A Memory of Kilim

I have this Kilim, supposedly an antique from Turkey, for about 20 years.  I bought it from a Turkish immigrant, say “Z,” who was my ex-husband’s BFF.  He was in Kilim import business and stuck with a bunch of Kilims with no cash to pay bills.  He had a wife, who was a fundamentalist vegetarian southern belle he had met in Georgia.  They had a little girl and a baby boy.  My ex visited him to find his BFF broke and asked me to give him some money in exchange for a rug he had brought back to the U.S. from wherever…   We were still legally married but my ex had left me for a younger woman and was living with her, unbeknown to me at that time.

When my ex and I were dating in Georgia, Z was always with my ex.  They were said to be soul twins.  They were inseparable: a crazy Turk and a crazy Japanese art students in Athens, Georgia.   Z had a girlfriend and my ex had had a series of girlfriends/fiancés, of which I was the latest.  

I was young and crazy, too.   We all drank crazy.  And I treated them as a package deal.  To my ex Z came first and I was the second.  

When we decided to get married after 3 months of dating, Z seemed to be having separation anxiety.  When we moved to NYC from Georgia, Z drove with us on a U-Haul truck.  Soon Z graduated from the University in Georgia and traveled back to Turkey, then came back to NYC with no place to live, no prospect of job.  

We were not in early 20s.  All of us are around 30.  My ex had a beginning position with minimal pay in a design house.  I didn’t have a working permit.  Z moved in with us in our one bedroom apartment in Brooklyn and stayed about 3 months, during which time they were always together.  

Eventually Z got a job in Georgia and moved out.  When he visited us in NYC next year, he was with his new Christian fundamentalist fiancé.  Did I tell you that Z was a Muslim? 

When they left, my ex had a breakdown.  I guess he couldn’t tolerate the idea that Z didn’t belong to him anymore.  

Many things happened after.  Z had a baby, and then Z went to somewhere in Middle East to find some business opportunity leaving his pregnant wife behind.  His wife took care of the kilim business and had a baby boy by herself.  Then Z came back without money.  Their kilim import business was not making money.  When I and my ex stopped by to see them, their gas was stopped.  

They looked happy though.  We had a nice time.  Soon after, they broke up.  The wife found Z was cheating while he was in the Middle East.

And we broke up.  And I bought a kilim.

It was more than 20 years ago.

Recently I got an email from my ex.  He learned that Z had died about 15 years ago from massive heart attack at age 50.  He said he had talked to him over the phone a couple years before that, and then Z disappeared.  Z’s ex-wife found my ex on Facebook and reached out.

I remembered about Z occasionally, but he didn’t affect my life.  I have nothing unsaid to Z.  I wonder when people die to us.  Did Z die to me when his existence stopped affecting me or when he had a massive heart attack, or when I learned he was dead?  Then, when did Z die to my ex?  I don’t know. 

I still have this kilim.  And I remembered once I took a crazy part of a crazy drama.  Everybody is gone now from my life dead or alive.  This is how getting old feels like today.   

The photo is a Shibori Tie Dye scarf Z made more than 30 years ago, which I recently sent to my ex. I don’t need it.

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.

Heart Chakra Story

What does love mean?  What does love feel like?

When I was a little girl, I loved my aunt, who was the only source of goodies in my life.  She took me out for shopping and bought me cute outfits. She took me everywhere to show off her adorable little princess and told everybody how cute I was.  I loved when she took me to a milk bar on weekends and we had pancakes and milkshakes like a mother and a daughter.  They were fluffy and sweet with syrup. 

I followed her everywhere like a duckling.  I waited for her to come home and cried for her when she was late.  When I ran to hug her, I smelled alcohol in her breath.  She showered me with beautiful things.  She gave me money to buy beautiful things.  She even wanted to adopt me one time even though my parents had no reason to give me up.

She spoon-fed me sweets and snacks, regardless I wanted or not.  She dangled pieces of snacks in front of my face.  I automatically opened my mouth and ate whatever she fed me like a baby bird.  She was amused and she still tells me how cute I was.  She still tries to spoon-feed me.  She is 94 and I am 60.

She licked my face because she loved me so much.  It was yucky and I didn’t like it.  When I said no, she proposed to trade licking with goodie.  If I let her lick my face, she would give me a candy. 

Quid pro quo.

That was love I knew.  Love meant stomaching boundary violation from people who gave me something because they “loved” me.  And I had to accept it regardless I want or not because if I didn’t I could lose love.

As you might guess, I had eating problems.  When I felt unlovable, I filled the empty “stomach” with food, binge eating junks.  I always felt an insatiable hunger no food could fill and once physical stomach was full, I felt more unlovable and nauseous, and I forced my self to throw up.  (She could have fed me veges at least.  I wonder why nobody binges on veges…)  I still have difficulty to tell if I’m hungry physically or emotionally and feel anxious on the perceived prospect of going hungry.  The Covid-19 grocery situation was nerve wrecking. 

I always loved plants.  I asked my aunt to buy me a rose bush.  It was a red rose.  I loved her (the rose).  I was a disturbed and rebellious teenager and didn’t talk to my parents, but I went to talk to her every morning.  She was the only one who heard me.   My aunt was building her house in the property next to our house and one morning I found my rose plant was crashed under construction materials.  I hated her for that and cried and screamed that I would burn her house down.  It was the moment I learned that what I loved and cared for could be destroyed or taken away at a whim.  I learned that nobody cared how I felt.  Witnessing me in a murderous rage, my aunt replanted the rose bush somewhere safer.  I didn’t care about the rose after that.  My heart was crashed.  My heart stopped talking to the rose.  The rose bush was me.

My aunt sill “loves” me in her way.  She doesn’t see me or hear me.  She still sees a little princess.  Every time I visit Japan I spend some time with her as a physical form on which she could project her little girl.  It has been my role and I still play it because she is 94 and it is just several days a year.

After my father passed, I’ve learned that my aunt had an affair with a married man (in 1950s in Japan!) and had a daughter, and that the man and his infertile wife adopted the baby girl.  I realized that I had been a stand-in for her daughter.  Entire town knew about the scandal and still she showed me around as if I were her own daughter, in a matching outfit with her.  I remember people asked her if I was her daughter.  I am sure they knew I was not and still they asked, alluding to her illegitimate daughter.

I don’t feel love toward her.  I feel I owe her quasi-daughterly care.  Nobody loves her.  She is highly narcissistic and very caustic woman and I am the only one she “loves.”

BTW I just noticed I still react the same way when I am threatened to lose something I love.  I have this urge to destroy or walk away from the very thing I cared about so much, shutting down.  I don’t do that anymore, but I am aware that it’s still in me.

Yesterday I found somebody cut and stole a sunflower from the park garden I took care of.  It happens often.  Some people are assholes.  I felt the old rage bubbling up from my stomach and wanted to pull all the sunflowers from the garden, so that nobody would take my love away from me.