Brat

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All around me this month of November people are being grateful.  Gratefulness posts fill the Facebook feed. People are grateful in the newspaper. Soon it will be Thanksgiving, and people will take a pause on bad news and be grateful on the radio too. This gratefulness is very wearing.

I do not feel grateful. Although I know I should.

It is not yet three months since I was diagnosed with  bilateral breast cancer, and I have a lot to be grateful for.  My surgeon and staff were wonderful, and surgery went well. Lumpectomies, rather than full mastectomies. My surgeon is happy with the cosmetic result. So am I. Now it is November, and the prognosis is good. Friends and relatives call and write and show up in our family’s life to take care of the business that I can’t take care of myself. Despite being truly thankful for the help, I am not experiencing gratefulness in my heart. I see rather than feel the good fortune that surrounds me.

I am afraid.

I still cannot use my arms freely. I tire easily.

I wonder what the next treatments will bring.

Lately, I am a grumpy brat.

And unfortunately for my family, I have never been very good at “faking it.”  Honesty oozes out of me, like ripe cheese.

It’s taking far longer to recover from my surgery than I expected. I am not sure what I expected. The scar tissue in my underarms still pinches or burns if I lift things, move or twist. My lymph system hasn’t figured itself out yet, and sometimes my underarms are puffy with lymph fluid that can’t circulate properly. Three of my perfectly healthy lymph nodes in each armpit had to be removed to ascertain that they were cancer-free. I should be grateful that there were cancer-free, I know. But I just want my lymph nodes back. If this puffiness lingers or becomes extreme it’s called lymph-edema and requires medical attention. This is very frustrating to me me: shouldn’t there be a better way to tell if an organ is healthy or not, than by removing it from the body and chopping it up??  I was told about the possibility of lymphedema, but I didn’t think it would happen to me. I didn’t think breast cancer would happen to me. I still don’t really believe it is happening to me.  I picture being stuck like this, alive, yes, cancer free, but unable to DO anything. Alive, but not able to LIVE.

I am impatient, as you would expect an ungrateful brat to be. At least I am staying in character.

People come up to me to congratulate me on the latest good news, which is that I do not have to take chemotherapy. The results of my tumor biopsy and my blood work show that hormone therapy with tamoxifen will be enough to repel cancer, (unless it gives me cancer which is also a possibility). I want to be happy about not having full scale chemo, and when the doctor tells me, I am relieved, and I celebrate. But once the  bottle of white tablets is sitting on the kitchen counter, the idea of really taking this drug for 10 years fills me with dread. I am already dealing with fluid-filled arms and other medical side effects of the cure — how next will my body be altered? I remember how I felt at the beginning of this process, before every appointment  like hiding under our bed. Now I feel like climbing into my car and driving to Mexico.  I like my body the way it is. I do not want to be altered, even in an effort to save my life.

One night before I say prayers with Owen, I try refocusing my mind on some things I’m grateful for. The temperature is dropping, so I say I am grateful for a home in which to stay warm and cool and dry, no matter what the weather. I am grateful for yummy, interesting food to eat. I am grateful for nurturing care from family members and from friends — for meals and groceries arriving at our door. Loads of laundry washed and folded. For people who care.

Owen leans over and places his hand on my head as I speak these words aloud. I have to smile. It feels like a benediction. The hand of an angel boy on my head. A  mischievous and naughty angel boy  — capable of pilfering snacks from his nephew’s backpack and sneaking off with them — yet who still seems to act on behalf of better, gentler spirits than my own.

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Yesterday I poured out all my frustrations and negativity to my physical therapist Erica. It’s asking a lot from a PT, but she’s a game lady. Maybe I am not the first. Her response was to show me a diagram to explain how the lymph works, how it meshes with the capillaries and yet operates in an entirely different manner from blood. That really helped. I could see this troublesome lymph as beautiful, not stupid and lost, but clever.

And at that moment I made a decision. I will take my tamoxifen for my mom, I decided. I will do everything that imperfect medical science has to offer in her name. Rather than driving to Mexico or hiding under my bed, I can do this for her — because she didn’t make it in her fight against cancer, and I very probably will. So this afternoon, after a certain number of hours of avoidance, I faced down my white tablet of drugs beside the sink. It was surprising and nice to turn around and see her face just then, smiling at me from inside a frame on the kitchen counter. My mom, captured looking joyful and festive in her kitchen, preparing a turkey for a Thanksgiving long ago.

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Above my studio desk is tacked a pen and ink sketch of a woodland shoreline. “To Mother, With dearest love from Marianne”  reads the inscription at the bottom, a Christmas gift my mother to her own mother. When I look at it, I think of the bond that my mother and her mother shared, and the many letters that traveled between them. Below this, also tacked to my wall, a huge paper is filled with a child’s water color of a figure and the words MOM FREYA MOM FREYA.

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When my daughter painted that joyful pink and purple figure, its stick arms and fingers spread wide to give or receive a hug, was it an image of herself  or of her mother that she captured there?  The lines that form the boundaries of self-hood can blur. Who is who? What parts of me overlap with you, in a given moment, and what parts of you are responsible for me?

Misunderstanding, trampling the boundary between self and other seems part of the human experience. At least this is what I have witnessed in my own evolution as a human being. Not only between mother/father and child, but between lovers, in academia, in art, in business.  A mother takes over her child’s wedding, a father tries to turn his son or daughter into the athlete he never was, a surgeon is overbearing, a nurse bosses the patient in her care, a receptionist takes out her tooth pain on the next caller. Every day, in 100 ways, we crowd each other, mostly unintentionally. How easy it can be to forget that every person we meet has a unique thinking and a singular experience of reality.  Especially those we know the best and love most dearly.  We can lose track of our sacred separateness – until a clonk on the head reminds us how we transgress. But only in a heavenly marriage have two the option to become “one heart and lungs.” Any other time, try to start breathing for someone else and suffocation is the only possible result.

Dealing with a person who is mentally disabled, who cannot speak for himself,  invites the blurring of boundaries. As we head into winter I try to figure out: is Owen cold? or is it just that I am cold?  Owen’s way of showing that he is too hot is to be cranky until someone removes a layer. Why doesn’t he just remove a layer? Given his tendency to take a tour of the patio mid-Saturday-morning-bath, even on a recent 20 degree morning, his mother is inclined to guess that his sensory system does not work right. But those who do not speak or care for themselves, even those whose sensory systems do not relay accurate messages, can still have a great deal going on in their brains.  Wants, frustrations, fears. It is up to those caring for them to intuit needs and desires, guide behavior, and yet to respect their autonomy.

For Owen these past weeks of my recovery from surgery have been a trial I think.  It has been both amusing and frustrating to watch Owen and the bulldog Trum each misbehave as kind volunteers and helpers attempt to take them out for walks. Trum stops midwalk to turn and stare at the person at the other end of his leash, Owen stonewalls about leaving the house, or walking down the trail in the woods. Of course Owen stonewalls for me too, in normal life. There could be so many reasons for his uncoopertive behavior.  He could be voicing the eternal “NO!!!” but he could just have a stomach ache. I cannot take ownership of my child or my dog’s ungrateful behavior. I can only be grateful that there are friends willing to step in and try to shoulder the burden of running our family.

My job is to heal, something that is taking far longer than I ever expected.  As I try to resume my normal life the smallest things such as the way I snap the sheets when folding them, or swoosh the water down the drain after Owen’s bath, or chop the carrots is rough on my healing armpit muscles. I seem to keep re-injuring tissue not yet healed. Even small movements like typing and writing weary the scar tissues there. Why is it taking so long?  No one has suggested an answer. Maybe I am abnormal.  But I have no control over this either. My armpit muscles and myself share a lot of turf, but I cannot change them. I want them to hurry up, they seem to want me to slow waaaaay down.

When I pictured how our family would get through this challenge, I worried about how reactive Owen might be to the changes, and what form his acting-out may take, whether he would make horrible messes for unhappy people to clean up.  You would think that a woman who blogs under the banner of “embracing chaos” would be more chill about letting go — but it’s one thing to embrace your own chaos, and another to ask other people to do the same. I have watched people come and cook, and go buy groceries, and I have witnessed people come and take recalcitrant Owen for walks, and wash our laundry now for almost four weeks. It is humbling to allow those boundaries to be blurred, and to receive care. And it is hard.

We code events in life as good or bad, but how do we really know?  An unfortunate event makes unexpected growth or relationship possible that was not possible before, or without it. We want to think we know, but there is so much we do not understand. What seemed chaos falls into order.  What was intended well can be revealed to be destructive. The boundaries can blur.

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I remember a painful phone conversation I had with the author of this painting, in which she was able to tell me how much it angered and hurt when I said what I thought was the reason for her past adolescent behavior. Even though the event had happened years before, it felt so good to her to speak of it, to cry over that broken boundary between us, to ask how how could I presume to know what she herself was still figuring out?  How indeed.  Thankfully, boundaries blurred and broken, like aggravated muscle tissue can be healed, with time, with rest. With apology.

My mother struggled with boundaries, a tendency to try to manage what she could not manage, or to control what was not hers to control.  I remember her telling me that silver jewelry was for me, based not upon what I preferred to wear, but on my skin tone.  For a while I did wear only silver jewelry; it didn’t hurt me. She only wanted me to feel beautiful — missing the fact that I already did. In her last months on earth I remember watching her advise a family member how to dress better, what category she belonged to, based on her reading of the book Color Me Beautiful.  My 20 year old self was outraged and called her out on it in words I cannot remember. She did not deny it — but wept.

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Wonder where the heck I am coming from about a married pair becoming like one heart and lungs? It’s better explained here by Curtis at Off the Left Eye.

New Year’s Acknowledgements

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Many friends and relatives have been very kind in supporting of my writing endeavors. But unknown to all, it is really the woman at the cash register of my health food store who keeps me writing. When in a slump, or distracted from my writing by life’s madness, sooner or later I know I will have to face her, as I send my groceries down the conveyor belt to be rung up and bagged.

“I haven’t heard anything from you for a while,” Sherrie admonished once.

Oh the shame. Keeping to schedules has never been a strength of mine.

The next time we met over the heads of kale and vitamin bottles, I mumbled something about it being pretty hard to find anything anything positive to write about Owen lately, he’s been difficult.

“Oh but you always do,” Sherrie smiled, warm, unapologetic.  Sherrie is a big fan of Owen’s adventures.

I left fortified with better things than vitamin pills.

Surely every artist must have a Sherrie.  That first person whom they know in no other way but through their art, the stranger who says those bolstering words, “I just love the way you write!”

Caring for Owen is a profound experience. As the last of his siblings returned to college this week, and Edward left for the west coast for the week on business, leaving Owen and me eyeball to eyeball, I am more conscious of the sweetness that Owen brings to my life than usual. And by that I do not mean the juice he splattered all over the floors yesterday cramming oranges into his mouth as fast as he could before I got downstairs to catch him. No, I mean something a tad more lofty. It has to do with seeing, with focus. Have you noticed that spiritual teachers seem to show up, disguised as the difficult people and the painful experiences of life?  Then there seem to be other people, wonderful mentors who show up to help one digest it all, and prod us to do something useful with all we have learned.  Owen has had his turn at both, though he seems to prefer the first role.

But today I want to acknowledge the woman behind the cash register. Without that prodding, the writing I do might never reach the light of day.  Thank you, Sherrie, for holding my feet to the fire. And yes, I will get back to work.

 

Thanksgiving Fetishes

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It is early Thanksgiving morning and Owen is celebtating. He has his plastic pieces, and is sitting warm in bed between his dad and mom in a rental home in the snowy Poconos mountains. Lucky guy. Pretty cozy. Even more cozy if he would lie down, so the comforter and blankets would cover his dad’s left shoulder and his mom’s back. However, Owen cannot be convinced. He does not like going back to sleep after his customary 6am, regardless of holiday. It may be that his empty tummy rumbles right up throat-ward. Or it may be that Owen doesn’t like being prone when awake. Logical.

The three of them are pretty content with their compromise, worked out over years. Those who prefer to be horizontal on a dark cold holiday morning are grateful to be lying down. And those who dont prefer it, are resigned to be slouched forward, partially covered. Owen should be grateful to be warm between two heat-producing mammals, crackling his plastic, instead of prowling the icy hallways partially clad – but this may in fact have been his first choice, if consultd. But if he isn’t grateful, well, you cant always get what you want but if you try sometimes you might find you get what ya need.

Snap. Crack.

Crackle. Snap.

Owen is lucky enough to be a member of a very large extended family. This year he joins the tolerant Simons clan, who come together across hundreds of miles every two years celebrate this holiday and have Owen appreciate and rifle through their possessions, and love him anyway. Hopefully all Owen’s admirers are similarly blessed.

Owen’s aunts, uncles, and cousins are used to him and his ways, so when he swipes Uncle Hil’s drink bottle a universal shout of “Owen! You crapster!” will go up and that’s that. They knew him as a fussy little crapster, and as a middle sized crapster, and so the shift to plastic-obssessed young adult crapster isn’t too much of a shock. Those infant episodes, such as when Aunt Alicia startled to feel a small appreciative hand pat-patting its way around her shapely, velveteen clad posterior, have an endearing impact on a relationship otherwise strained by trying to recreate while guarding one’s ginger ale from a relative with an “I came, I saw, I conquered” approach to all plastic products.

Just last week Owen’s mom discovered a dozen eggs rolling about in the refrigerstor bin, with some once-bitten apples, the clear plastic egg crate that held them disappeared. New lows in thievery.

As this Thanksgiving unfolds, there will be much to be grateful for in Owen’s world (mashed rutabega and pecan crunch pumpkin pie!) and there will be things to avoid (even if mom bought all cardboard egg crates). This will be true across this huge and diverse nation of ours – as we come together to celebrate and try not to talk about inflamatory political subjects. Resist the plastic egg crate – or better yet don’t buy one! Do not covet your neighbor’s plastic bottle. And relax and warm yourself between the other heat-radiating mamals. You and Owen are blessed.