My own personal Oz

1. I have some big time resistance to making this list today. Rather than sit down and do it, I have found myself doing chores instead of my morning routine, putting my tennis shoes on to go for a walk and sitting on the front porch watching the bees in the lavender.

2. Resistance is so familiar, especially when I am close to the truth.

3. The question now is, do I have the courage to name the truth? Or will I dance around it.

4. I think I’ll dance a bit and see if it rises up through the words.

5. We met with the doctor yesterday. He reminded me of a small Wizard of Oz, sitting at his desk, holding onto all of the information, all the testing, all the medical records in a thick folder instead of behind a curtain.

6. I couldn’t see his eyes. Even when he looked at me.

7. He spoke a neuropsych babble kind of language that was completely foreign to us. We are educated people and it was difficult to understand. My husband is an educator, highly intelligent and accomplished with advanced degrees. I have a graduate degree and have worked in the health field for years. (Doc wasn’t happy when I asked him about an ROI. When I asked for a copy of his report, he said I probably wouldn’t understand it.) He began with the anatomy of the brain, droned on and on and on and slipped the word Alzheimer’s in, then went on and on and on.

8. I watched my husband glaze over and interrupted the brilliant man who tightly held the information (in truth, my husband is the brilliant man and his body holds all the information…but, I digress.)

9. My husband: if I heard you correctly there have been multiple sub cortical infarctions. What I want to know is if there is something wrong with my brain.

10. Doc, from behind his paper curtain, says, “Yes there is.”

11. I start to cry. I already knew the answer, but now it is in black and white. It is part of the medical record and the pieces are beginning to make sense. He does not have Alzheimer’s. He does not have dementia. He has significant brain damage and is unable to use abstract, complex reasoning.

12. I think I will continue to dance around my resistance. Just writing this has been exhausting. My feelings are deep. Not sure I want to go there now.

13. “If I only had a heart, a brain, the nerve.”

14. I just need to remember that I do.

Disembodied craziness, chiclets and dripping faucets

Yesterday a large envelope was delivered to me. I didn’t recognize the name on the return address and it was completely unexpected. My anxious mind immediately thought I might be in legal trouble, because, that’s how I roll. Nope, it was official correspondence from my fathers lawyer and included the last will and testament of a man who claimed he loved me. There in black and white, dated in 1992, was the truth that I have always known. He disinherited me, he did not claim me as his own. When I called the lawyer to find out why I received the information he stated that there was an account that had not been included in the family trust and the proceeds would bypass me and go to my children. This is confusing to me as my father also did not want anything to pass onto my youngest son, yet he is named in the will. The lawyer told me I was welcome to contest the will, as if that would ever have crossed my mind, if I wanted to. Nope it is easier to know I didn’t exist for him. The truth hurts. The alternative is craziness embodied.

I broke a tooth on Saturday. Front and center. During chemotherapy two of my back teeth shattered, one upper, one lower, both on different sides of my mouth. Other teeth are decaying and need attention. During treatment my oncologist told me I could go to the dentist but would need IV antibiotics, but at the time, I was uncertain if I was going to live through the treatment and figured I would leave the money for my kids rather than fix my teeth. I only eat soft food now for fear of another tooth breaking. So, this morning I went to the dentist to fix the tooth that broke on a banana, that stares at me in the bathroom mirror. I left with a dental plan of care. One tooth to be pulled, one root canal, one implant, six crowns, multiple fillings. So, if I’m going to live, I guess I need to get my teeth fixed. I told the dentist I just didn’t want to look like I had chiclets for teeth if there’s a choice. Major remodel begins Thursday with a four hour appointment.

Ten to seven this morning, the phone rings. “This is your evil step-father calling. Sorry I didn’t call sooner. I don’t have any way to get your mom to her appointment this morning, you’ll have to come get her. Your brother can’t.” Well, don’t ya just know, I am sitting around waiting to be beckoned. I drive to Vancouver, pick her up, drive to Lloyd Center for her appointment at 11:00 all the while listening to her go on and on and on and on about how she never gets thank you cards, no one ever called her, how rude my son is and what did she ever do to him? It is really similar to a dripping faucet and when I finally responded, she interrupted me. I told her to stop talking and listen. She burst into tears. Is this really what I quit my job for? Is this what my golden years are going to be? She has no capacity to think of others, to empathize, to see or think of others. I understand why people pull away from her. And yes, not that different than pre stroke.

Disinherited
Disembodied
Shattered
Decaying
Uncertain
Unseen
Drip, drip, drip

The wonder of words. Seeing my felt experience over the last twenty four hours in black in white, on the page in front of me helps explain why I am tired, why I feel tearful, why it is hard for me to take care of myself.

Yet, there it is: I am the only one who can make this different.

Only I can take the time, make the time, to put the pieces back together again and to learn from the chaos.

I could have asked

“I hate to tell you this, but you just might be setting yourself up for a big disappointment.”

“Hey! Thinking about you. How are things? You? Much love.”

“So appreciate your contact and love.
I will answer honestly because I know you ask honestly. Cancer sucks.
I’ve spent the last year being strong for treatment and reality of cancer.
Now I am feeling,after not feeling for so long and am aware of how deeply I’ve been impacted both emotionally and spiritually.
Vulnerable. Tender. Raw.
Kinda like my body felt after surgery and chemo and radiation.
My spirit has been stripped, peeled wide open.
You are a good friend for asking thank you.”

“Thanks for your honesty and vulnerability. This feels like a live conversation is needed! I’d love to do tea sometime. Let me know.”
I could call back and set up a time.

“Let’s meet for tea date. After April 1?”
I could call and set up time.

“Let’s go for a walk.”
I could call and set up time.

“Come to a cancer support group.”
I went. I learned to chant.

“Call me.”
I could call and set up time.

“Let’s do something soon.”
I could call and set up time.

“You’d never know you had cancer.”
It is more than a disease.

“You taught me to just show up.”
Haven’t seen this person since diagnosis.
I could call and explain.

“Let me know what I can do.”
I could call and educate.

“You look great.”
Surprise.

“No one really needs to know you had cancer. Don’t talk about it.”
Gee, thanks.

Birth of baby.

A teenage daughter died in tragic accident.

Recurrence of brain tumor. Chemo, radiation, hair loss.

Kidney cancer.

Death of a mother.

Death of a mother.

Major surgery for partner.

Loss of job.

Fear of loss of job.

Retirement.

Starting school.

 

I understand, without question, life happens, illness happens, accidents happen, death happens. Beginnings and endings happen. This is the way of life.

Yet.

One person has walked with me.

One heart friend sat with me in tenderness on the front porch, gently loving me as always through the years.

One person listens to me rant, then tells me to put on my big girl panties.

My sons stepped up and did the driving, the note taking, the thinking, the planning, the care-giving.

But, whoa! It is difficult to understand my felt experience and assumed sense of responsibility when few, if any people followed through with contact and care, especially when I felt awful or discouraged or angry or misunderstood and withdrawn.

People don’t know what to say or do and I believe they do their best. No one tries to be unkind or disinterested.

As a chaplain, I often tread lightly with people and am careful not to impose my beliefs and needs on others. After my experience with cancer, I realize that it is possible to not know what someone else needs, it is often difficult to ask and it is hard to put into words the internal experience of fighting for life. I don’t know what I needed. I didn’t know how to ask. I used every ounce of strength to keep my head above water and not dream endlessly about sinking.

When I had my surgery, I was never asked if I wanted a chaplain visit.
I could have asked.

A chaplain friend from 30 miles away made an unexpected pastoral visit.

Multiple visits to the hospital for MRIs and port placement and was not visited by a chaplain.
Yes, I could have asked.

Three different pastors visited me at home following surgery.
I had to ask one of them for prayer.
I haven’t had communion in over a year.
I could have asked.

I have multiple friends who are chaplains. I pains me to say that I did not experience spiritual care in the way it is often charted:

“offered spiritual care, compassionate presence, life review and prayer.”
Yes, I could have called and asked and set up a time to meet.

Honestly, I could have asked but I was just too sick, too tired, too brain fogged to know or teach someone else what I didn’t know and didn’t understand.

 

 

 

 

Heavy wool and feathered down

Dear Blog,

I have missed you. I have thought of you often in the middle of the night, incapable of jotting down words in my bedside notebook which remains empty.

I have been unable to write, to document the last 19 months since his death. Plans to read books have gone unmet. My fingers cannot remember how to knit. Not one art project has been completed, let alone started. My mind is muddled and my spirit is dulled. My closest companions have been foreign Netflix and Amazon shows. Grand Hotel. Ekaterina. Morocco.

An easy way to numb myself until sleep arrives.

Six months after his death I faced my own mortality.  No one said it and no one really wanted to talk about it. That is what happens when one hears the word CANCER. And surgery, hurry up Anne, get thee to the hospital. Chemotherapy followed by radiation. Surrounded by family and friends support, there was a strong sense of pulling inward and away. I had strength only to go to treatment, hoping to survive.  Although, there were days I would gladly have died. It would have been much easier. Less complicated.

Thinking about life. Sometimes thinking about dying.

Disjointed.

Disconnected from others and myself, unable to put a hand out, to ask for help.

Sinking into a familiar depression, no longer called situational anxiety.

Alone, wrapped in heavy wool and feathered down, snuggled deep in my own bed. Blackness and damp air seeps in and surrounds and fills every window and crevice inviting me to trust, to let go into darkness.

I woke, startled, talking out loud. I had a voice that rose up from the darkness, from and out of deep sleep.

The water is calm, like glass, morning mist clinging to the banks. A sparrow, disoriented in the garage, can’t find an escape. Sometimes it is better to be left alone to find the way out. Geese fly in formation, instinct guiding them.

He died over a year ago. I have not shed tears or felt sadness.

There was relief. Freedom. The lifting of a dark, secret burden.

Yet something did change. Something shifted.

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There is a new calling. Finding words for my grief. Discovering new ways of creative expression. Noticing the changes in myself and learning to uncover the meaning of beginnings and endings.

Really, the calling is the same. It has not changed. It is not new.

I am the one who has changed.

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waiting for dawn

The Dark night of the Soul :: Week 6

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the time is now.
darkness is deep and dark, endless and thick

st john of the cross
st teresa of avila
the cloud of unknowing
eckart tolle
i read the wisdom of the ages, others exploring the dark night of the soul and their words scatter like sand across the pages, never taking root in my unsettled soul.

for now, i live my own wordless night,
express my own
explore my own
own my own
the dark, beating hours of the soul.
oh, lord.
how long, how long?

today the darkness sounds like charlie brown’s parents
hollow, vacant, unknown tongues, trilling emptiness

this darkness has no color, no form
yet it wraps itself around me like a heavy, damp woolen blanket,
luring me to sink into depths of consent.

i drop down into a tub of hot water and soak in the darkness.
maybe a return to the womb
maybe to cleanse myself
maybe just to feel buoyant
maybe to make myself feel something
warm
held
it doesn’t work

and then the call,
in the midst of a call
always enmeshed
always overlapping

she, on one end of the line, in her own self absorbed confusion, not so different than pre-stroke, unable to be present to anyone but her own discontent and the lifelong relationship of pain and demands and unmet expectations.

the other end of the line brings the known, expected and tender words.

“he’s gone.”

and, he has always been gone.

i sat in the darkened sunroom, alone. i cannot sleep.

slow.
detached.
muffled.
free-fall in slow motion
no emotion
no fear
dulled to the core

i wander room to room, inside to outside, moving from one bed to another, staring out blackened windows, listening for sounds of life.

i turn on the television and am met with the carnage and death, streets filled with fallen bodies.

have I felt too much?
am I on overload?
is it possible that i am devoid of emotion or caring or compassion?

or, is this just where I am
sitting in the dark
detached
alone
unknowing
waiting for dawn

will his death finally set me free?

breathe in, breathe out

Names and Faces :: week 5
In. Out. Breathe in, breathe out, breathe with, follow those thoughts, meandering and moving with each breath.
It was only one week ago. I woke in the early, early hours of Sunday morning. I lay in bed, listening to the darkness, searching for the neon red numbers to mark the time. Waiting for the light to shift, for dawn to break, for the day to begin and the night to end. Hours passed. Thoughts muddled through my mind. No answers, no purpose, no reason. Just wakefulness and uneasiness. So I breathe, waiting. I breathe and let go.
At first light, I left a note on the counter, packed a bag, and began the drive over the mountain, headed to my father. The father who told me not to come. The father that had disowned me. To the father that abandoned and coerced, that manipulated and taught me that girls don’t matter, girls are good for only one thing, girls never amount to much. The father that never acknowledged birthdays or Christmas or graduations. My body is imprinted and remembers the thump of his forefinger on my chest, my being knows the submissive crumple to the floor, my heart has no tears, no longing, no hope. And yet, with each breath I take, I follow. I go. 
I remember years of teaching and preaching, endless words, thoughts and theology that centered around the concept that a personal view of God was reflective of your relationship with your father and this all hinges on an assumption that God is male. For some reason, with a measure of grace and a bit of luck, I have not struggled with the image of God. If I had based my understanding of a higher power on my father, I would not have held any faith of any kind in any God other than a tyrant.
Those three early morning hours took me over the mountain and into the desert, an appropriate metaphor for the journey I was on. No music, no words, no anxiety, no fear. Only the gentle wind, the intense beauty of brilliant blue sky, and the awareness of my breath, leading me, inviting me to follow. Inviting me to be alive, inviting me to be intentionally present and aware.
I sat at his bedside, barely recognizing this man, the one called father. His breath was shallow, he felt hollow and empty. I began to breathe with him. His eyes opened and he looked past me, towards the ceiling, off into the distance. When he focused on me he let out a small moan and said, “Oh, you look so pretty.” I pulled the chair closer.
  
The image of God was in that moment. No accusations, no need to be right, no need for forgiveness or absolution or justification. The image of God, the face of God, was in the pain, in the reality of death and dying. That moment can only be grace. Nothing forced or held onto, nothing demanded or required, simply present.
Today I am at the coast, breathing salt air, walking the edge of the Pacific Ocean. He was discharged home with hospice. He is no longer responsive. No food. No water. He is preparing to let go for maybe the first time in his life. He just might be closer to knowing the true face of God than I have ever have imagined.
Last night I woke in the darkness again, to the sound of the river and the blackness. I thought of my father, also alone in a different kind of darkness and offered a prayer of gratitude. I will continue to intentionally breathe with him, over the miles, even at a distance, as he slowly leaves this life.
In. Out. Breathe in. Breathe out. His last breath is yet to come.

 

i wish him well

where do i go when it’s all just too much on my own?

finally, a frank conversation

he has been dying for years

lung cancer, colon cancer, ileostomy, colostomy, chemotherapy

blood clot or tumor or maybe a mass on his bladder

his wife cried throughout conversation

he has a DNR

this is the good news

he is in the hospital

in my faith tradition, angels are messengers.

they protect and provide, punish and proclaim.

they are warriors who worship God.

in my being, i cannot find Raphael’s putti cherub nor the winged, great company of the heavenly host, praising God and saying, “glory to God in the highest, and on earth peace to those on whom his favor rests.”

i struggle to believe or even hold the notion that angels protected some but not all at the pulse nightclub or at the twin towers or on egypt flight 804.

so, yesterday, where were the angels when I called?

“it’s too late

where were you when i needed you?

i won’t let you in.

even if you come, i won’t let you in.

i loved you when you were a little girl. i loved you at your wedding.

i have always loved you.”

in january, he called to sing “Happy Birthday” for the first time in my memory.

i am sure he sang it when i was younger, but then again, i am just as sure he never did.

“i’m not afraid to die. i just don’t want to be there when it happens.

i’m on the home stretch. i know i am dying.

three things can ruin your life. fire. flood. divorce. i’ve had them all.

say hi to your brother (not my son).

i refuse to be down in the dumps.

my mom would call me “chick.” she always asked me to take care of my father and i promised her i would. my own dad had a difficult time saying I love you.

you don’t remember moments, you remember memories. i believe i am getting through because people are praying.

i’m sorry.

i didn’t know how to be a good father. from the bottom of my heart now I apologize.

now, just go and have an asthma attack.

your mother and i divorced at the wrong time in your life. i wasn’t, i didn’t know how to be a good father.

you treat salesmen like you treat a dog. treat them right and they’ll love you. if you kick um, they will bite you or run away.”

where do i go when it’s all just too much on my own?

i dissolve in tears. for the father i never had, for the years of rejection, for the manipulation, for the irrational, senseless meaning of his words and intent, even now as he faces death.

i allow myself to enter into the deep loss of daddy grief, emptied of expectations, exhausted by the years of pain, and fall to the floor in release.

as i am emptied, tired and swollen, thirsty and sad, i wonder again, where do i go?

i go within. i do what i know how to do. i breathe. i look for the message. not the why.

i look for what this means. i tell the truth. i find my center. i pray.

“it’s too late”

it is never too late.

“where were you when I needed you?”

it was your responsibility to be there for me, your daughter.

“i won’t let you in.”

i don’t need to be bedside to be let in. i can be there by being here.

“even if you come, i won’t let you in.”

i am already in.

“i loved you when you were a little girl. i loved you at at your wedding.

i have always loved you.”

you did the best you could. i am sure you did when i was younger, but then again, i am just as sure you never did.

and today, if there are angels, i pray they minister peace, even now to his tortured soul, that his passing would be gentle and he would have no fear. i wish him well.

“All will be well, and all will be well, and all manner of thing will be well.” Julian of Norwich