Tuesday, January 27, 2015

Minivans




There are the rust colored stains in the back seatbelts from the great 3-year-old-in-a-carseat nosebleed of 2009.  (Imagine three-year-old Paul, trapped in a carseat, experiencing his first major nosebleed.  Imagine his three-year-old friend Eric, trapped in the seat next to him, eyes wide and silent,  splattered with his hysterical, headshaking, screaming friend's blood.)

There's a urine smell that's awakened when the sun comes out, a relic of a Camp Fire Girls' trip that ran, uh, just a little too long between rest stops.

There's a bit of Gramma-vomit in the front passenger seat carpet and probably some other residues we'll not discuss from that trip down from Seattle that ended straight into the emergency room at Eugene's Riverbend Hospital.

More recently there's the smell of dead dog.  It was a hearse for our Beagle, the legendary and mightily difficult Moby.

Pine needles from a camping trip in 2014 collect around lego heads, gum wrappers and a sticky half-eaten cereal bar someone decided she didn't like.    I think there's a bit of mildew growing in the very back seat because I didn't open up the stowaway seats again after the last big haul in the summer. 

I threw an old horse blanket over it so the kids' friends wouldn't be completely creeped out.

There's sticky coffee-milk scum over loose change in the cupholders

--because mom's no better at keeping this dang van tidy than anyone else.

And I'm driving the damn van to the garage because it's December 27th and the oil hasn't been changed since June and the front headlight has been out since September.  I have to get down to Eugene to work with my sister on my mom's memorial.

The van is a fucking mess -- even by my standards.  And while I've vacuumed it before taking it in, I'm still feeling hot and ashamed -- frustrated and angry.

This ugly, smelly, beat up van, despite my abuse and neglect, runs great. 

It's going to fucking outlive me.

And the front desk clerk at the garage has no idea what's coming at him.

"So what was the mileage when you last changed your oil? Are you SURE?"

"It's what the sticker said"

"Let me go out and look at this.  The sticker is supposed to mark when you are supposed to GET an oil change, not when the oil change happened," he lectures.

Like I give a flying crap.

His office mate gives me a knowing look and tells me this guy can get a bit into the care-for-your-car lecture.

I can feel one of those cancer-fits coming on, like the outburst at the department retreat and the tantrum camping with my family last August.

I start rehearsing.  There's been a lot going on in the last six months.   Nah.   I know I can't explain without losing it.

Clerk-guy comes back, his milky face pinched and earnest, triumphant.  Yes, the mileage was when the car was SUPPOSED to be serviced...

Clerk-guy starts flipping through paperwork.

"Now let's look, here.  See?  We can detect some patterns.  Let's look at your car service history."

Steely and still.  I am steely and still.  I feel my scary rising.

He taps his pencil on a line entry in some logbook he has.

"If you think going through a log of my service history with me is going to change my behavior, it's not."

Scary steel.

He's appropriately taken aback.  Sputters he just wants to suggest....

"I can't discuss ANY of this right now."

Tears rise.  Voice shakes.  Body solid with anger.

"Ok.  Ok.  No problem.  No problem." Hands thrust forward, his angst clouds his face -- goal clear:  Get her out of here....

And I just can't shake the ANGER I feel at.   that.  VAN.

It's everything HARD about motherhood -- errands, kid-shuttling, rat-transport, dog-hearse. 

It's the ammonia smell of sweaty clothes left days in a gym bag and swim suits hanging to dry over the back of the car seat.  Because squeezing a rare workout in already seems like a HUGE stretch.  Bringing the gym bag in, after grocery bags, forgotten school notebooks,  and your work computer for that evening telecommute is just.   too.  MUCH.

It's the dirty, smelly, chaotic, overwhelming side of motherhood.  Where we overfunction and overextend and snap at the kids and beat ourselves up -- for the mess and the chaos and the dirt and the sticky, drippy residue of the breakfast we gobbled at a stoplight, balanced precariously between the dashboard and steering wheel.

Because we've not made a plan for how to get kid A to point B and kid C to point D in time to make our 8:30 appointment.

We beat ourselves up.

I HATE THIS VAN.

HOW DARE THIS VAN OUTLIVE ME?

How dare this van continue its life, hauling back wet, snow sloppy boots, hot chocolate spills ---with socks, gloves, hats and snow pants spread like confetti among a half-dozen giggling boys?

How dare this van steal the future scars left by adolescence? The bumps, dents and bruises of a newly emerging driver?

How dare this van, this mover of furniture, carrier of campers -- and witness to load after load after load of childhood artifacts transported to Goodwill --

How dare this van outlive me?

I have worked so damn hard at this motherhood thing.

And I've not always been very good at it.

And just when I think I'm getting some of it right.

How dare you steal this from me?

Fuck you.

Monday, January 26, 2015

 
The best thing about news that your tumor markers are slightly up?  The high five with your spouse in a sun filled kitchen and  the  "Bora Bora, here we come!"

Two nights in a row this week I awakened with bone pain in my un-radiated hip and lower back.  My lungs are a bit smoky despite increased strength, stamina and energy.   (Smoky feeling is that feeling you have in your lungs after hanging out all evening in a bar and breathing in second-hand smoke.) And my liver enzymes are up a bit. 

Now, just to be clear, I have been drinking these last two weeks quite a bit.  Memorials and funerals combined with good friends and family made for quite a few indulgent evenings.  And there were a couple of added evenings of just straight up self-pity and bitterness.  (I have an entire entry to write on that.)    It might be my enzymes are up because of these, more traditional abuses. 

But food tastes "normal" again -- and I can eat to my fill without issue.  No salty taste.   And wine tasted just fine during those two weeks.   So I think my body has simply adapted to the Affinitor.

Ach, so ist es.

We'll see after the PET scan.

In the meantime, anyone have any good tips on how to book a good, reasonably priced vacation in Bora Bora?  It's time Francois and I celebrated a real honeymoon. 



Saturday, January 17, 2015

2014 has been an AWESOME year.

It's been over two months since I've posted here.  I've been on Girls' Weekend in Whistler with my BFF's Serena and Ramona -- and I've gone to Teatro Zinzanni for a surprise birthday party with my dearest friends of my entire life (Francois, Janis, Medora, Serena, Ramona, Michelle).  I've spent an amazing weekend at the Oregon coast over Thanksgiving with my family... and watched, in a magical sunlight coastal day, my mother take her last breaths.  My dog died, too.  And I went to Hawaii with my soulmate (Amazing!  https://lepeintre.shutterfly.com/pictures/8 ) and I designed and executed a memorial for my mother.  It's been an awesome end to 2014.  I have so deeply enjoyed the love, laughter, friends, family, connection, intimacy, growth and loss -- all shades of beauty to be experienced.
 

Teatro Zinzanni!

 
 
 

Girls' Weekend!

 
 







 

Thursday, January 15, 2015

Realizations of 10-Year Olds

Paul's been crying a bit and asking for a cuddle at bedtime every once in a while for a few months now.  He has had a few nightmares.   When I made the reservations for Hawaii shortly after being diagnosed, he had a dream that he was on a Hawaiian island with his 'tribe', his friends from school.   In the dream, a boy he is friends with at school, whose mom has just finished treatment for a very serious breast cancer, was swimming in the ocean and was attacked by a shark.  Paul awoke screaming because he knew the shark was going to attack him next.


Last night, through his bedtime tears, Paul shared that he was afraid I was going to die.  I cuddled him and held him close and told him I had those fears sometimes, too.  And so did Papa.  He sobbed, asking if that meant I WAS going to die.  I told him maybe and that we don't know when -but that I do know my oncologist said it would not be this year.  I also promised that I would tell him if that changed.

There was something honest, and clean and open about this.  He cried and I held him and the sadness boiled up and out and floated away.

And today we are happy.

Tumor Markers and Pet Scans






After some fatigue, a bout with pneumonia and some achy bone pain in my back and hips, I was pleasantly surprised by my tumor marker results this December!  My PET scan still shows that new tumors keep appearing and some tumors don't stop growing -- but most of them are staying calm or even reducing.  It means that while my prognosis is still pretty grim (cancer is supposed to react uniformly to treatment.  Having a non-uniform response means my cancer is intelligent like something trained by years of harsh anti-cancer treatments.), I get to stay on a treatment for awhile that has given me the ability to live my life fully.

I feel amazingly healthy and strong.  I am looking forward to taking my son to Disney in February and taking my daughter on a trip soon after.  I hope to travel with my soul mate Francois and then go to France this summer with the entire family.

Much love to all of you.

Suzy

Eulogy/Tribute for Mom

The mother I remember as a child was fiercely competent and unquestionably wise. 




Like every mother, she was the final word, the reader of stories, the determiner of bedtimes and meals.  She was the source of cuddles and bedtimes stories, the nurse to our booboos, and the secure boundary setter around behaviors, values and traditions.  

I was smart enough to know how smart my mother was.  She never said anything to me I would disagree with or question.   When I would crawl into the room unnoticed to eavesdrop on the adults, it was clear my mother’s words were respected and sought out. 

But although I can never imagine anyone calling mom authoritarian,  mom had an absolute authority over all of us, Dad included.  

My parents never fought.   

For all questions, problems, concerns, needs or desires, she had the best answers.  We all knew it and none of us ever doubted it.

When I saw her outside of this role of supreme being, it was perplexing.

I remember one time, when I was about 4 or 5, finding her in our hallway, laughing so hard she cried.  She was leaning against the wall.  When I saw her, I was concerned about her tears.  When she saw my concern, her laughter intensified and she could no longer stand.  She slid down against the wall to the floor.

Having her for a mother was safe, secure, solid, assuring and a bit scary. 

When she needed to punish me, she would ask me to fetch “the paddle” myself.  I would have to get a stool, move the stool over to the fridge, step up on the stool, and grab the paddle off of the top of the fridge.  Then I would bring the paddle back to her.   She would very lightly tap my behind with the paddle and I would always be completely overwhelmed in tears.

I had total trust in her wisdom and her authority.


We moved to Eugene when I was entering 2nd grade.   In France, they call the age between 7 and 10 “L’age de Raison” as children move out of concrete magical thinking into a broader sense of themselves and the world.

My family went through a time machine.  We left a house with green carpet and lineoleum, almost manically spotless housecleaning, home cooked dinners, fluffy high hairdos and  Mad Men/Leave It To Beaver pictures of marriage.  We moved into a house with fluffy textured brown and orange carpeting in the bathrooms and golden yellow and brown patterned carpet in the kitchen. 

(The Second grade classroom had round tables and pillow filled reading corners, not individual desks.)

Mom went back to school at Lane Community College.  She got a job working swing shift at the City of Eugene working for the police department.  With her college training, she became a key punch operator and eventually, over time, she worked to become a programmer analyst.

(For those of you younger than 45, a key punch operator is the person who would punch the holes into the cards needed to input data or commands to the computer.  This computer would take up entire floors in a building.)

I used to think that mom was a victim of my father’s financial unreliability.  But my mother corrected me on that point.  She WANTED to go back to school she WANTED to work.  She LOVED swing shift and oddly placed weekends because of the child- and spouse-free time it gave her.

She said Dad cried when she told him she wanted to go back to school and find a job.  He thought it meant she was going to leave him.

She just wanted freedom.  And so my Dad joined her.  He called himself a feminist.  Mom taught us to “think like men” (entitled) and Dad taught my sister and I to never limit our possibilities for ourselves.  Every time I offered a feminine gendered career goal, Dad would switch it to a male gendered one.  Why be a nurse when you can be a doctor?  When I said I wanted to be the first woman astronaut on the moon, he said, why be first when you can be best?


But one thing my generation learned from her generation is that we can’t have it all, can we? 

During the first two years of this transition, mom was a tired and frustrated mother.    Dad’s attempt to step in as male-feminist only went so far  (Hamburger Helper and frozen TV dinners were our staples until the microwave was invented.  Then we all moved to TV trays and microwaved hot dogs.)

She still loved hanging out with her friends, laughing and music.   

I remember one night laying on the floor under the piano with my sister in the living room.  We could hear mom in the family room, laughing in response to a show she was watching.  She was hysterical and boisterous.  Kaylea and I would burst out into gut wrenching laughter every time we heard her laugh.


But in 3rd and 4th grade, I developed a fear of the automatic garage door opener because the sound of the opening door meant mom was coming home – and she would be mad.

She would complain. 

Making the bed

Cleaning the kitchen

Discipline about TV, chores, leaving notes, food, etc

The thing that made me so fearful wasn’t mom’s tone of voice or anything she said.  She has never said *anything* mean or false or wrong to me as a child.   In a way, this is what made her scary.

Dad also very rarely said anything mean or unreasonable to me as a child,  but he did do so once.  So I’ll give you this example of what mom never did, so you can understand what I mean.
Dad once came home and told me I was going to cause him and mom to get a divorce because I wasn’t doing my chores well.  I was only about 10, but I knew that was bullshit.   But it was also strangely empowering.  It was clear and present evidence of his imperfection as a human and a parent – and evidence of my own competence, my ability to separate for myself what was my responsibility and what was not.


When Mom came home tired and frustrated,  it made me feel inadequate, because she made good points and I really couldn’t see why I couldn’t’ just do as she needed. 

Aside:  As a mom, now,  I know my mom was probably not feeling angry with *me* when she came home frustrated.     I myself have often come home, seen the overwhelmed house, the tight dinner timelines before kid activities start, and started in:   "Do the dishes pick up your clothes who left these crumbs all over the...."   And that’s on mellow, content days.    We saw a family therapist in the summer – part of exploring how to support each other for what we know lies ahead in our future.  The therapist asked the kids if I was grouchy when the cancer bothered me.  Both kids simultaneously blurted out “Oh YEAH!”  What does she do?  “She yells at us.”  I DO NOT YELL!  I SPEAK EMPHATICALLY  and it just happens to be my job to tell my kids what to do.








Kaylea said to me once “Aren’t you glad mom found herself before we grew up?”

We become who our parents are, not who they tell us or train us to be.  So when mom discovered transactional analysis, she basically gave herself therapy through self-help books.  And so she gave us kid books describing to us how to give ourselves therapy.

Our lives were filled with activity and happiness.  We rafted down the Willamette after my parents came home from work.  We watched them sing Barbershop.  We were busy with Eugene Celebrations, family outings, fun dinners or events with my mother's dear friends.    These were active happy times.  We had a marvelous time as a family.

Analyzing people and relationships became my mother's and my favorite hobby. 

Mom couldn’t stop growing.  And when growing caused any kind of rupture with her ego and who she thought she was or should be, she would simply shed the part of her ego that wasn’t working for her and make room for the new growth.

As soon as I reached adulthood, my relationship with my mother changed to one of friendship.  I think she changed that relationship when she came to visit me while I was doing my Fulbright in Germany.  In the context of a foreign country, she was able to give me all of the control over planning and decisions.  She suffered a bit for it.  We missed midnight trains, got lost dragging heavy luggage over cobblestones, and slept in some strange places.  But it was the beginning of our friendship.

There’s another gift, a more abstract gift she gave me. 

“You grew up without me and I never forgave you for that.” - Mom circa 1990

I came back from college and living abroad independent.   It was the first time my mom had emotional needs around me that were not about the logic of my behavior or her behavior, and just about her emotional wants, needs and desires.  It was about her role changing in my life with her having no control over that change.

I have been taught very explicitly by my mother that emotions are a weakness, especially when they are not tied to clear logical values or principle to fight for.   So for the first time, I got to witness my mother, on a few, very limited occasions that I can count on my two hands – say things that were a bit squirrely.

"I don’t believe in Black Holes," she told me when I came back for my college break, excited about what I had learned in astronomy.  I was shocked that the woman who had told me that higher education was a given, not an option, and that I should become an engineer, would reject science.  "They taught us a bunch of stuff when I was in school and then they changed their minds," she went on.  Honestly?  I think this was an emotional response to my need to lecture on every new thing I learn as if it's the first time anyone on the earth has ever heard of it.  Even my Campfire girls would call me “Madam Talks-to-Much."
 
Mom had rules about families and the role of the daughter's family with her parents.

 
"The bride's family gains a son.  The son's family loses a son."
 
"The husband adapts to the wife's family."

With all of these rules from the mom about the role of the daughter's family, Francois was pushed a bit to the side in our family.  When we were expecting our first child, he tried to exert a bit of autonomy.  Mom wanted to come to the ultrasound, but we told my mother that this was something we wanted to share as a couple and that we really didn't want her present.
 
So Mom planned a vacation with her best friend, Isabel Wyant.  They were going to spend a couple of weeks exploring the national parks in the northwest, in including Glacier and others up near Banf in Canada.   They just happened to make the entire national park trip in 4 days instead of 14. 

 Mom and Isabel showed up on our doorstep in Seattle exactly one hour before our scheduled ultrasound.  And we all jumped for joy together at the news that we would be having a little Delphine.
 
I was a bit worried when she told me about her plan for a party for the birth with champagne.  I think the only reason that didn’t happen is that she couldn’t imagine getting Isabel to join in.
 

We got married in France before getting married in the United States.  There was a lot of financial advantage for us doing it that way.

Mom was out of her head.   The mother of the bride is supposed to plan the wedding.  I surveyed my friends and they all agree that you should get married here first.  I’m objective and data driven.   

There are two levels of squirreliness here – first the logic itself.  But second, the belief that the world works on logic.


In our family, emotions are OK around principles and values – so Mom developed the guilt rules. 
 
 

Mom would say things like "Oh, so is the new rule going to be that I only see you every two months?"
 
Years later, when I started to get a glimmer of what this was about.

 

“If you simply said you missed me and wanted to see me, it would be easier to call you and visit.” 

 “I just can’t do that," she said, "I can’t be that vulnerable.”

I didn’t have the wisdom then to grasp that I could learn to understand her emotional needs and simply support her.  I hadn’t had enough practice dealing with imperfect human behavior, so the illusion was still that needs were problems to be solved.  Tasks.  Weaknesses were things to be fixed.   I hadn’t learned yet to see her as a complex, beautiful flawed human whom I could simply be caring towards.   Just as I didn’t see myself as a flawed person who people already took care of in this way, including her.    No fixing, no solving.

________________________________________________



A Lovely Depression - Vulnerability Without Neediness


At 45 my mom was diagnosed with diabetes and a thyroid disorder.  She went into early menopause and suffered this very physiological depression.

She talked about not being upset or sad or angry about anything in her life but just crying all the time.   Acknowledging or experiencing overwhelming emotions we know we don’t understand was a rare occurrence for mom and me.  We are used to having emotions, but we always felt like we could find their source and “solve them.”   (Emotions are viruses, you know.)

So her suffering a clearly biological depression was transformative for both of us. 

I told her I really LIKED this person I was seeing, talking to me through tears.  

I felt I could connect to this person.  Someone who shared what she felt without translating those feelings into requirements for me.

I also learned around then that if I asked mom questions about herself, I could get wonderful stories.  Our talks moved from the analytical observer of others to ourselves.

Armchair civil rights activist.
Feminist.
Angry 14-year old daughter who remembers her mother as fierce and angry.
A beloved but frustrated wife.
Life.  Death.
Motherhood.

Gramma


When mom became Gramma, she very mindfully and intentionally became the compassionate observer.  She watched us struggle with what she had struggled with.  She offered the loving patience to the grandkids she knew we mom’s had short supply of.  She suspended any illusions she had of needs or weaknesses (ours as mothers) being something to solve and she became an observer of our humanity, seeing our identities, as complicated, changing landscapes.

About this time, she also became an observer of her own body.  She had diabetes, an emergency quintuple heart-bypass, heart failure,  scleroderma, asthma, thyroid disorder, and auto-immune liver disease.  Near death experiences didn’t scare her.  She gained a compassion for herself, left behind beliefs that one can build a perfect identity by fixing weaknesses and addressing needs.  

Her sense of self and self-love became less cerebral and more organic.  Death, weakness and vulnerability made her grateful, eager and appreciative of life. 

 She was a gardner of life, a nurturer, a celebrant – someone who didn’t sweat the small stuff.

One of the highs I witnessed with her was right after she had nearly died from multiple times from massive bleeds.  Over the span of a couple of weeks, my sister and I had been told she was going to die in three different hospitals in two different states.  We escaped from the third hospital here in Bellevue after some arm twisting and cajoling  and  jumped straight from the hospital into the car and shot down the freeway to Eugene.  We felt like Thelma and Louis.  She spent a spring so JOYFUL and appreciative of beauty.  Her garden that year was just fabulous.  She couldn’t stop talking about how beautiful life was.  Brilliant.
 
Her garden became the symbol of her joy and gratitude for life.

Enlightenment and Facing Your Fears

 
Mom told me that she asked Dad to die of heart disease.  She said she didn’t think she could go through nursing someone through cancer again.  Her memories of caring for her own mother when she was a teenager still hung in the trauma of her subconscious.     

She almost died the same day that Dad died.  The stress had triggered her autoimmune issues and she’d contracted some rare, often fatal epiglottis infection.  Kaylea and I went into the hospital at midnight to sit with mom in the ICU and tell her that Dad had died.   

I was also diagnosed with cancer that year and was still bald from treatments.

For mom, the things she most feared had happened and she survived.  A kind of peace settled on her – and a renewed resolution to enjoy what life was willing to give her. 

 

One of the happiest moments in life is when you find the courage to let go of what you can’t change. 





One of my Facebook friends who has many terminal diseases and has struggled with MS for quite some time wrote recently

I have clear evidence that my life is ending in the near future and you cannot understand fully how liberating that is until you are given that bit of news – Kathleen Lynch

I think this only works for people who have already grappled with terminal disease.

My mother’s response to her own impending death was to choose to let it go.   With each near death episode, she would tell me she wasn’t afraid to die.  
Letting go of the hold death can have over you does not mean giving up or rolling over and dying.  It didn’t mean she wanted to die.   It’s much more like a shedding of an illusion of control. 

With clear evidence of your life ending in the near future, you gain a freedom from some social responsibility.  It’s clear which problems you cannot make a dent in in the time you have left and therefore easier to let a lot of things go.  

Ego and personal gain become irrelevant.  Envy, resentment, contempt, anger, and frustration tied to those ego needs float away.

It leaves more room for beautiful emotions like sadness, love, joy and gratitude.  My mother lived mindfully and intentionally in this space, despite overwhelmingly painful effects of her disease.    If you visited her while she was sick, you saw her in this intentional space. 



My earliest memories of my mother are of cuddling with her and listening to her read to me.  I loved her body – ample, warm, and soft.   In the end, that’s all she wanted from me.  To feel cuddled, nurtured and loved.   I wish she would have had cancer, with its researched, predictable outcomes and timelines.  I wish I would have been able to predict the two weeks needed away from work to go and lie with her and do that cuddling.

My mom had more than just good attitude, though.  She had what I would call enlightenment, in a kinda Buddhist sense.   
In this place, where ego doesn’t matter and gratitude grows, there is an opportunity to see a beauty in the complex systems we have all woven together. 

Thich Nhat Hanh writes in no death, no fear,

When you were a child, you may have liked to play with a kaleidoscope.  Every movement of your fingers created a wonderful pattern of colors.  If you moved it a little bit, then what you see would change.  It was also beautiful, but it would be different.  You might say that the different patterns within the kaleidoscope were being born or dying, but as a child you did not mourn that kind of birth and death.  Instead, you continued to delight in seeing different forms and colors.  (Thanh 86)

I think mom could see us as the kaleidoscope. 

And here today, we each bring a experience of mom, a color, a hue, and create a kind of kaleidoscope image of who she was.

Thank you for coming and sharing.





Mourning while Dying




I am strangely comforted by my mother's death.  And there is a noticable lack of loss.  I think a lot of what we grieve when we lose those we love, is the future we imagine(d) with them.  If you are successfully working through the process of mourning your own death, then you have let go of your own future.  It leaves a lot less to grieve for and a lot more to celebrate.

I am relieved my mother has died.  Her pain and suffering was difficult to witness.  It was difficult to decide whether what she thought she wanted was really what she needed.  It was difficult to watch overwhelming caretaking obligations turn into spaces where decisions about interventions needed to be made -- again and again.

She wanted to stay home.  She wanted to avoid conflict.

And her death allowed us to allow this to happen for her.

But I am also relieved that my mother dies before I die.  Death is a lonely concept.  It's about leaving the people I love and entering a space nobody understands.  I like to imagine my mother, waiting in sleep or in some sort of afterlife.

I will go home to my mom.