all that I have

What should have been, would have been rolls around in my head like a marble in a tin can.

dink. dink. dink.

She should have lived longer.  She would have taken care of Grandma, and Grandma would have spent her last days surrounded by a love as encompassing as the sun.  She would have been so happy.  

It should not take an act of God for a healthy woman to get pregnant.  She would have rubbed my back during labor. She would have cooed into my baby’s ear. She would have been so happy.

She should have had a sixtieth birthday, a seventieth, an eightieth.  A retirement party. She should have traveled with John to Europe, Asia, British Columbia. Bisbee. They would have sent me postcards from beyond, taken couple photos kissing at a vista wearing matching cargo shorts. She would have been so happy.

dink. dink. dink.

There is no would haves or should haves.  There is only the now, and the now echoes with her absence.  Grandma has dementia, and will need to be placed in a care facility soon.  My stepfather is lonely and distraught. I have no baby. Our hands are empty and searching.

I become sad.  I become angry. I long for a future that can never be; I rage at a world that brings beautiful things into existence only to tear them apart.

Moments of reprieve come in glimmers, where the tin can rattle stops for a second, a minute or an hour.  I walk. I run. I feel the earth so sure beneath me, as though pressing upward to meet my feet. I feel the air slip between my fingertips, travel down my throat and out my nose.  I lay in bed and feel my blood warm the tips of my toes, pushed forward with every squeeze of my relentless heart.  My fingers meet my harp strings and I feel comfort in a meaning that exists beyond words.

I don’t have what I want, what I thought I would get. But my grief opens me to the gifts of the present:

The breath, the heartbeat, the shuddering of trees in a rainstorm, the beat of a wing against a yellow sky.

The clouds build up.  The sun lights them in a show of fiery splendor.  Then darkness comes, and they disappear as silently as they were created.

the stories we tell ourselves

There is an endless buzz of chatter in my head.

Sometimes I tell myself nice things:

You are such a kick ass [wife, daughter, nurse, friend etc.]

You are really good at [laughing, scratching the dog’s ears,  playing harp music]

and then, of course, there is the negative, judgmental bullshit:

You really suck at [assembling Chinese-made furniture, calling your relatives, making small talk]

You look like shit today, and your thighs are basically disgusting

That’s an awesome idea, but you can’t pull it off

And even worse, projecting that kind of negativity towards others

You are a lot better than him because of [x, y, z]

She is clearly a fucking idiot

Its exhausting, and its all a load of crap.

If I’ve gotten anything from my daily mini meditation sessions, its being able to pull away, ever so slightly from the chatter. Its still there, buzzing away.  But sometimes the light burns through the smoke, and I can see a bit clearer.

Who I am is not my job, how I look in a dress, how I interact with others.  Who you are is not the balance of your bank account statement, how many friends you have on Facebook, how many countries stamped in your passport. We aren’t even good or bad.  We just are.

Maybe this is the void, to be everything and nothing at all.

It is scary for me to face this truth, to break away from old ways of looking at things.  I have spent much of my life valuing my worth based on how much you love me.  I have suffered because of this. You have suffered because of this. Nobody can love me enough.

But see, there is light breaking through my bullshit.  The stories we tell ourselves are just that: stories. They are as thin as the air we breathe. It doesn’t matter what I think, what you think.  Deep down, there is silence and there is peace.  Its the stuff we all are made of.

 

Buddha sez its all good

an encounter in Miami

I’m in Miami, at a meeting related to a new research protocol.  I took a walk around prior to the start of the program, and when I was approaching my hotel after strolling by the water I found a lovely, red-cheeked cockatiel, squawking on the ground. Perhaps escaped from the confines of domestic life, or perhaps abandoned by those who could no longer care for him, he appeared ill-equipped for life on the streets of Miami.  There are strong weather currents about, and his yellow plume was ruffled in the wind.

“Here, birdy!” I crouched next to him. 

He appraised me with distain.  Squawk!

“C’mere sweetie!”  He started to waddle away from me.   I’m not sure he could fly.  Squawk!

He awkwardly moved towards a concrete wall and sat there.

I wanted to pick him up or pet him, but wasn’t sure that would make him feel any better.  I had no vehicle, no way to take a bird in my hotel room, and a meeting to attend in less than an hour.  There were only a few hotel staff around, running too quickly to acknowledge me, let alone stop to help a distressed cockatiel.

So I left him sitting, facing the wall, this vibrant, lovely creature.  And I wept for my helplessness, my weakness, my limitations.  I cried for the beings of the world that can do nothing but face the insurmountable barriers before them and shriek, and I shed hot tears that beautiful, living things are often discarded like trash. 

I wish things were different.

appreciate the present moment

Yesterday, I heard an interview on NPR with Joan Didion. She read an excerpt of her recent book, Blue Nights,which chronicles her grief following the death of her only daughter.  In this except she discussed how her boxes and drawers of mementos which fill her New York apartment serve not to bring her back to the moments in time they represent, but to remind her how she didn’t fully appreciate them when they occured.

This is the dense part of the human condition, the obtuse flavor of reality: we can’t appreciate what we love the most until we lose it.   

Maybe this is why I like the pictures of my mom and I from my infancy so much. In photos from later years, its harder to overlook the forced teenaged smile, or the vacant eyes of someone who would rather be doing something else.  

One of the gifts of cancer is there is often warning before the end.  But even though I anticipated my mother’s death for a year before it happened, I couldn’t fully get it.  There was part of my heart that simply didn’t understand, or wouldn’t accept, that she could be not-here.  I spent the better part of the hour after she died lying next to her in bewilderment.  Yes, she had been in hospice for a month. Yes, I’m a nurse. But it seemed… impossible.  

No, I didn’t appreciate her fully when she was alive.  And how could I? We don’t appreciate air until we drown. 

And now she is gone. With my whole heart, I appreciate her, and other parts of my life too that I would otherwise have taken for granted.

a new beginning

Mom’s funeral was Friday, January 6th. I’ll probably write more about it later, but it was… nice.  She has touched many lives, and it felt good to be surrounded by people who were there in gratitude and love for the opportunity to know her, be it for many years or only a few months. I also felt honored with the presence of a few people who were not there so much as to say goodbye to her, but to support me.  

And now the sympathy cards are trickling to a stop. My phone rings infrequently.  I’m back in Tucson, working my first 5-day week since November.   The quiet and return to my regular routine feels good, except when it doesn’t.

Grief feels like your soul is on fire.  Nobody else can see it or feel it. There’s no way to extinguish the flame, to alleviate it the suffering, to shorten the course.  All you can do is sit still while your insides turn to white ash. 

 

 

I started a photo album on Facebook after Mom was diagnosed.  It had pictures of her first chemo treatments, her cute wig, etc.  I named it “New Beginnings.”  I continued to post pictures in that album right through to her last days. After she died “New Beginnings” seemed distasteful– it was the end for her, afterall– but I never changed the name because I couldn’t think of what else to call the album. 

Well, her death is a new beginning for me.  Not of the joyful sort, but my life is forever altered. Her passing has split my life in two– the before and the after. 

Its now 2012, a new year.  Many are making resolutions for the kind of life they would like to lead.  As for me, I just want to figure out the best way for me to grieve and cope. So many ideas sound great (yoga, hiking, friend-time, support groups) but I haven’t followed through. I still feel bewildered. At least I’ve stopped looking for missed calls from her on my phone. I don’t know yet how to live without my best friend and my companion since my Day 1 on Earth– its just too soon.  But  I will eventually find my bearings in this new life of mine, and meet the joys and the challenges that await. 

nonacceptance

Mom’s funeral is tomorrow.  Oops, make that today. I wish I was feeling better physically– I’ve gotten very drained and depleted– but that’s  just another unfufilled, impossible desire, another checked box on a long list of suboptimal circumstances.

I can’t accept that I’ll never see her again.

I have been recieving lots of sympathy cards and thoughtful words from caring folks. Many have commented to me that my mom will live on in my heart.  I think that idea will resonate with me in the future, but now much of what I’m grieving is forever gone: her smile, her laughter, the way she smelled, the way her hair felt between my fingers. I don’t believe in an afterlife, at least not one where human characteristics are maintained.  If any part of her spirit endured, it has transformed into something that isn’t very much like Janelle Shiner. So, yes. She will survive in my memory, but these aspects of her that I love so very much have vanished forever, gone to dust.

I can’t accept that I’ll never see her again

I wish she was would visit in my dreams, but lately when I fall asleep, its as if I plunge into a deep blackness. A place beyond the mind, beyond form, where concious thought and human drama dare not enter.  My sleep swallows me, and no comfort is found in the that dark recess.

I can’t accept that I’ll never see her again

I’m putting together pictures for a slideshow to be played at the memorial service. Photo after photo, my mom’s life summarized in chronological snapshots.  But even though a picture might speak a thousand words, it can’t illuminate a whole life. These photos don’t show her kindness, her charm, her warmth.  She is so much greater than the sum of her parts.

I can’t accept that I’ll never see her again

But it doesn’t matter whether I accept it or not.  Either way, I won’t see her again.

getting it

I’ve had a hard time staying in the moment.

During the last few months, there was a grim chorus chanting in my mind.  Over and over, a perseveration on the passing of my mother:

She is going to die.

I’m going to lose her.

When will it happen?

I felt pretty crazy.  Anyone would, with relentless thoughts like that.  I mostly kept them to myself, but felt driven to a dark and lonely place.

Now, its not a secret rumination, but a topic for family discussion.  We are discussing arrangements for after she has passed.  She’s receiving hospice services.  She looks great, but there is a beginning of an understanding amongst everyone, and not only the neurotic adult daughter, that this is it, folks.

The chorus has gone silent, but I now feel mechanical, and my days seem played out, as if I’m an actor in a role and my real life is tucked away somewhere else, waiting for me to exit stage left and get back to it.   I felt strangely disconnected when the hospice nurse visited yesterday, as if she represents some other alternate reality.  She couldn’t possibly be here for my mother– it feels to strange, too unreal. I nod and smile on cue, however– maybe I’m a good actor.

The fogginess (which must be some flavor of denial) drives me nuts. But my days have been very busy: caring for my mother, my grandmother, attending to out-of-town guests, coordinating holiday meals, taking care of the house and keeping in touch with other family by phone.  Maybe there isn’t enough left over for me to process, to “get it.”

“Getting it” is hard.  I remember when I visited Beethoven’s grave in Vienna as part of a college music and history course.  My professor stood in the cemetery and told us students that, above everything else, he wanted us to “get it-” to not just see a beautiful monument on a superficial level, but to understand the gravity, the importance, the reality of the place.  Have it bore deep down into our skulls, that this is real, this exists, this is where the great man’s remains are.  To feel the connection and the meaning.  To wake up from a world and from tendencies of thinking that aren’t rooted in actuality, and to be right there, next to Beethoven (and Brahms, and Schubert) and take it all in.

Maybe there is some balance I can find, between perseveration and just checking out.    Some way I can tolerate the agony of the present in order to take in the many blessings there as well.

 

 

more delays

Delays and more delays… the news in the last week is that my mom still has not completely responded to chemo. There was shrinkage of her lymph nodes, but several still demonstrate signs of active cancer.  Rather than to proceed directly to bone marrow transplant, her doctor is choosing to treat her with some other, yet-to-be-decided chemotherapy.  But first she has to mobilize stem cells, so her doctors can harvest them prior to whatever comes next, so if her bone marrow gets too depleted down the road, we still have the transplant option.  And her bone marrow is already tired, so the mobilization has also been delayed, to allow her some time to recover. 

Sigh.

It felt good, to believe we were at a point on the timeline, trudging steadily towards a remission and a return to Arizona.  Turns out, we weren’t as close as we thought.

I’m scared and I’m tired, but I’m glad my moms lymphoma is still showing some degree of chemosensitivity. 

I’m glad she isn’t feeling sick. 

I’m glad her uretral stent is working, and she doesn’t need an external nephrostomy tube.

I’m glad her oncologist is so compassionate.

I’m glad her insurance is paying for treatment at MD Anderson.

I’m glad for a multitude of things, but when I’m experiencing fear its difficult to keep focused in the present. And let’s be honest- the present is scary and full of the unknown.  She’s had nine chemo drugs– still no true remission.  Diffuse Large B Cell Lymphoma is a great kind of lymphoma to have if it responds to treatment. And if it doesn’t,you are in for a long and arduous struggle.   

My dad visited me last week. We had a wonderful time together, and it was very therapeutic.  I lost myself through exploring the mind of another (watching Dexter, Season II).  I felt peace and calm in the embrace of the Earth (while visiting a cave).  I lit a candle for my mom, in a hall filled with centuries of prayers and miracles (at a Spanish Mission from the 1700’s).   Now that he has left, I’m trying to take better care of myself.  Let go, breathe deeply.  Enjoy the garden, monsoons, my dog.  I achieve this with varying degrees of success, but I am trying!

 

thoughts while flying home

The unknown can make you crazy. If I knew what the future holds, I’d either breathe a sigh of relief, or hang on tight to every last moment. I probably should do both, here and now, without insight on what’s ahead, even though my mom will only have it one of two ways– she’ll beat lymphoma, or she will die of her disease and/or its treatment. At the moment I’m mostly just breathing shallowly, in lots of fears and regrets.

Why didn’t we go to Norway?

Why didn’t I drive from Tucson to Phoenix to visit her more often?

Jesus.

For the record, my mom and I shared many of the best days of my life. Even during my adolescence, a time that tries most mother-daughter relationships, we had tons of fun. Belly laughs, great food, trips to Mexico. Our relationship has been punctuated by joy for as long as I can remember. I can’t say I haven’t appreciated her, because from the very depths of my gut I have. But I want more time, more adventures. I never thought my mom would be critically ill at the age of 57, cancer threatening to snuff out the dreams of her meeting my son or daughter, traveling to Europe, enjoying the leisures of retirement.

I’m putting my faith in second chances, so my mom and I can see the fjords together, or once again walk the beaches in Puerto Vallarta. I am also grateful for the joy we had, and for my very excellent fortune in getting the best mother a girl could ask for.

For those of you with healthy parents, remember– they will leave you eventually. Unless you leave first, and that’s hardly an attractive alternative. So enjoy them! Take in the world with your mom or dad at your side! Someday, you’ll be glad you did.

reality bites?

“Most of life is so dull that there is nothing to be said about it, and the books and talk that would describe it as interesting are obliged to exaggerate, in the hope of justifying their own existence.”  -EM Forster

 

I’m reading  A Passage to India on my new Kindle, which was a birthday present (thanks, Dad and Nelda!).  I spent 7 weeks in India, and I am loving this book.  Its helping deepen my own experience, even 1.5 years after I departed for home.

Is life dull?  No,I don’t think so, not even on those days which could temptingly be described as “boring.”  But I also don’t think most of us digest life very well.  Its as if we live in a coccoon 95 percent of the time, hiding from reality in all its pain, and all its beauty, all its complexity, all its mind-bending wonderfulness.    Me, you, all of us are guilty.  Yes, the world breaks through our shells from time to time, and we feel floored by the sunrise, swept away by a baby’s giggle.  But most of the time, we are suspended in some other medium.  A place of impremeable thought, or overall numbness.

Its not entirely our fault.  Human industriousness has made this way of being easier and easier.   Television, iPads, cell phones, mp3 players.  Texting, typing, wii-ing.  We move from one air-conditioned environment to another, barely stopping to notice the weather outside.  We eat our food without tasting, knowing or caring.  It seems like we spend a lot of time, well, biding time.  And is it worth it in the end?

At the moment I’m trying to avoid a moral argument, although no doubt several can spring from this discussion.  I hate to dictate what is right for everyone else, and I like the internet and my iPhone as much as the next person.  But I think we all can stand to open our eyes a little wider– I know I can.  So, I enjoy the garden, the chickens and my dog.  They keep me connected to the Earth and the present moment.  I bike to work, because feeling the wind on my skin,  bringing the morning air into my lungs and taking in the ways which my surroundings change from day to day awakens me, and fills me with gratitude for my health and my life. 

I know waking up is a process.  Might take my entire life, or more.  But the journey is already paying off.