singing in the rain

Oh, Laura. You're such a rock.

Someone said that to my mom in the wake of my dad's death. She had two teenage daughters, a house to pay for, throngs of well-wishers to receive, countless arrangements to make, the love of her life to mourn. Good thing she was such a rock, right?

A rock feels no pain! And an island never cries.

(That has become a grand, no fail joke in our family, especially whenever one of us is under serious duress. It's okay, Mom! You're such a ROCK. Ha ha ha. Now ... getting back to me.)

However that comment was intended, it was heard like this: I don't have to worry about you, because you take care of yourself. You've got hard edges. You're dependable, made of stone, and thus off my list of people to listen to, respond to, reach out to. And that is of great value to me, and the rest of the world too. You're low maintenance.

But a rock isn't even alive. Why would anyone aspire to being a rock? Besides Paul Simon?

I've been thinking a lot about this. Why do we expect ourselves to be self-contained, invulnerable, independent - when the realities of our existence suggest something so totally opposite that fantasy? I've had to do a lot of asking for help over the past few months. Why is it so uncomfortable, for me and for most people I know?

Sometimes we don't even like to receive help. Even if we didn't ask for it. I've heard myself, flustered, say things to the effect of: But how can I ever repay you? Or: oh no, you can't buy that coffee for me, I am sure I owe you. We seem to understand giving and receiving as an economic exchange. I can't accept this; I don't want to be indebted to you. What will happen if I can't pay you back, and the balance of our relationship is thrown off?

Sometimes people say, oh don't worry about it, you'll pay it forward someday.

Maybe. But what if I don't? What if I can't? Then I have some kind of cosmic debt on my shoulders to worry about.

A little while ago, there were a few days when I was leaning on my mom for help pretty heavily. Mike must have been sick and I needed help with the kids in order to take care of him. I joked about how she was a rock, as a way to acknowledge that I knew she was taking on a lot. I was worried about her. She very seriously said, Sweetie, I'll be your rock. I want to be your rock. It's okay.

She was conjuring the other, beautiful side of rockiness for me: steadiness, consistency. A cool, sturdy place in which to lean one's weight. She was saying, I'm not going anywhere. It's not in my nature. My nature is to stay here and support you.

I thought about that. I thought about how I knew she was absorbing so much of the difficulty I was going through. I told her okay, yes, she could be my rock. But who, then, was her rock?

Blake.

But. But then who is Blake's rock?

I imagined circles of rocks, one layer sheltering the next. Or maybe stacks of rocks, weathered and sturdy, fit together like in an old stone wall. Because taking care of someone is never just taking care of someone. It's almost always indirectly taking care of others, too. And the effects go both ways: caregivers need support, emotional and material, to do their job. Behind every great caregiver is...another great caregiver.

But a stone wall doesn't quite illustrate my intuition about the structures of caregiving that support all of us, even those of us who are in one of life's delicious moments that offer up the intoxicating mirage of autonomy - the delight and power of not needing anyone. Even then, I think, we rest on the support of many.

Nor does the interdependent web of life quite get to it. Or tangle of threads. Or quilt of many blocks. The best I can come up with is the surface of a cool, deep pond during the first moments of a rainstorm, when the drops appear distinctly one by one, and you can sit on the shore with your toes in the water and watch each one hit the surface and send small ripples outward.

The raindrop hitting the surface is the person in need of help. The first ripple is the first level of caregivers: a sick child's parents, an elderly parent's adult children. The ripple beyond that is those that support the immediate caregivers: those that call and write, bring meals, offer hugs, listen. And the ripples continue throughout the pond's surface. But of course other drops are falling, and rippling outward, and everything overlaps and shifts, responding to the movement of other drops. We can't know how one gesture of kindness will move through this rain shower. Our intertwined interdependence is too complex and deep. It is never as simple as one person making another person dinner. There are countless souls involved in that exchange.

Who is Blake's rock? I have to ask her. Maybe her rock is no longer alive. There is more complexity still to this pond in a rain shower! Those ripples, I think, are not bounded by space and time. They disregard death. How could I possibly do what I do, without the unconditional love shown me as a child by my parents? They are both, alive and dead, rippling around me, supporting me as I support my husband and children. On and on.

So. Why exactly am I doing all this backbending, looking for an image that can communicate what I am struggling to intuit and conceive? Because if I  - if we - really believed that we are all part of a rippling complicated body of water (body of Christ, for some of us) that is alive and moving with acts of love and care all the time - well then! - our vulnerability and our need for help would not bother us so much.

We might feel more peacefulness about giving and receiving. We might understand that you don't repay a friend's gift. You don't exactly pay it forward either. You ripple. You generously receive, accepting an act of love, knowing it will move through and past you in every direction. You hope another will give you the same gift of acceptance when you bring a smile, a joke, a question.

Even if that latte came with a price tag, its meaning as a gift is untrackable in any accounts book. Why bother trying? Might as well give in, and enjoy your coffee with your friend.

caregiving tips from the trenches

I have long harbored a secret ambition that I am pretty close to realizing. No, no, I'm not finishing a novel. I'm not writing an undercover investigative journalism piece about the prison system. And I'm not working on a book about psychotherapy with college students. Not that, either.

Rather, I'm about to share with you an essentials list. Well-researched, ennumerated advice! An "eight things every parent needs to say at least once in a child's life" or "four foods to eat if you want to live forever" or "six reasons why yoga will fix every problem you have" kind of article. The sort people share on Facebook with a simple, elegant comment like: "this." or "amen." I love how you don't even need ten items anymore. We live in a civilization on the brink of collapse; I hear Donald Trump's name countless times a day; you can write a Top Thirteen or Top Six list if you want.

Given the proliferation of such lists, I've often wondered how so many people in the world possess so much authority. They know the most essential things about so many topics that are pertinent to my life. Parenting, practicing psychotherapy, eating, exercising, communicating, cooking, you name it. Six kitchen tools you can't live without!!

How do you know I can't live without them? Who writes these ubiquitous lists, anyway? And why do we like to read them?

More to the point: why do I want to write one?

(Actually, I'm a chronically late adapter of all sorts of fashions).

Well. Now there's something that I know a lot about. Not with the clarity of hindsight - I am stuck right inside this beast - but still. I'm not being smarmy anymore; I'm serious now. I'm going to share my experience in the form of a list. Please accept this humble offering:

TEN PRIORITIES FOR EVERY LOVING AND TIRED
CAREGIVER TO HOLD DEAR

1. Do cardiovascular exercise as often as you can find the time for it. And find the time for it.
Running got me through the fall. I've always known exercise was important for my general equilibrium, but now I need it. Getting sweaty and worn out is powerful: it's energizing, anxiety-reducing, mood-elevating, and it makes you feel tough. In my ideal world I'd do something heart-pumping for an hour every day. I never come close to that. But maybe you can. 

2. Relax...a little. 
Navigating health care and insurance, tracking medical symptoms, communicating with friends and family, and parenting three young kids means that I am both frazzled and NOT ALLOWED TO LOSE IT. High intensity caregiving is emotionally and physically taxing but if the buck stops with you, you have to find a sustainable way to counter the fatigue without falling apart. I have finally realized that the kinds of self-care activities that I normally love can leave me way too vulnerable and threaten my ability to function at the level where I need to be. I've had two massages and though they were lovely at the time, I felt depressed and out of sorts for two or three days afterwards. I went to a yoga class soon after Mike started chemo, and couldn't stop crying during sivasana. It wasn't a good cry either - I didn't feel safe or comfortable. You just can't expect to peel off the outer layers during a time of duress and find inner peace glowing comfortably in there. So my advice is don't peel them off - unless you have back up care arranged for at least a day or two. I can't wait to get back to yoga and cash in on the remaining massages dear ones have given me - after this experience is safely behind me.


3. Say YES when people offer to help.
You might end up eating more lasagna and brownies than you normally would, but that's okay. Graciously accepting help, over and over, is like exercising a muscle. It's shaky and uncomfortable at first but grows in strength and ease over time (I suspect learning to receive help is a prerequisite for growing in wisdom). Also, now I finally understand in my bones, as many loved ones have told me over the past year, that accepting help is a gift I give to the people who care about us. I am allowing them the satisfaction of doing something deeply human and loving - supporting someone in need.

4. Say NO to things you don't want to or can't do.
I have received countless asks for help with school and church and soccer and everything else. Just the usual: field trip chaperones, volunteers for an event. I'm sad that I can't commit to things like this, but I just can't. I can't plan ahead, and I can't invite more responsibility and stress into my life. So I say no over and over. I'm getting better at that, too.

5. Only connect.
Sometimes someone suggests I try a support group, or go see a therapist. Sure, those are good things to do. And maybe (see item #2) after I have some distance from this experience I'll seek that kind of support out. For now, if I have an hour to myself - and I've already squeezed in exercise - the thing I dream of is going out for a martini with my mom, or coffee with Amelia, or finding a far flung friend on the phone, or staying up too late with out of town visitors talk talk talking after the kids are in bed. I need to feel the connection I share with beloved friends. Otherwise isolation in the intensity and responsibility of this experience takes over, with its attendant loneliness, and I stop reaching out.

6. Eat well every day; indulge all the time.
I think you have to take great care of yourself, and be mindful of what your body needs. I think when you are able to choose something really healthful and beautiful and nourishing for yourself, you remind yourself that you matter too. A lot. But I also think you should never feel like you have to deny yourself anything, and that every possible occasion should be made as special as you are up for. So for me, that means a chocolate milk and cookies date with Beatrice and my mom at a playground this morning. Just because. And staying up past bedtime because we were having fun with neighbors. And eating a candy bar all by myself in the car after getting supplies for a school project one night, because I needed to be alone and to do something a tiny bit wild, with no one watching or commenting or asking for a bite. A Twix bar. There are worse things.

7. Adjust expectations as needed.
I was so frustrated in the beginning. I hung onto certain expectations: Mike will be better by Christmas (not so much), we'll be ready for a well-deserved Caribbean vacation in March (ha!), I'll have lots more time for myself and will work on writing (ah, well). Nothing about cancer treatment is predictable - at least not for us. Living one day at a time is really hard, but when things have been daunting that's what I had to do. Letting go of my old, pre-cancer way of thinking about the future was ultimately helpful, because I wasn't continually frustrated.

8. Do things you're good at.
Exercising competency! It feels great!! You might be someone who is really good at managing health care and tracking medication and finding creative ways to feed a sick person. But I still think it means a lot to engage in activities - professional or otherwise - even in teeny tiny ways - that remind you that you are good at things beyond the very insular and narrow world of caregiving. Even though the labors of caregiving, homemaking, and tending the sick are likely the most important work we do, it is also the least valued, the most invisible. Women do most of it. It's complicated. It's expected; it's also a sacrifice. I want to say both that taking care of vulnerable loved ones is a holy thing that we choose to do AND knowing the value and feel of oneself independent of this activity is really, really important.

9. Behold art.
This might be related to the above item. There is something about facing mortality and confronting our human fragility every day that can make a person sensitive, raw. The good thing about that, for me, is the depth of feeling I experience when encountering art - especially the every day, community variety. Hymns in church, a high school musical, the African drumming ensemble concert at F&M, an excellent novel, children's artwork on the walls of my kids' school. It moves me. It is mind-boggling to me that people, despite the reality of pain and suffering and death, put their hearts and souls into creating beautiful, true things to share. I love that.

10. Breathe. 
Sometimes we forget. I think it's useful to learn and have a structured breath exercise in your back pocket that you can take out and utilize in any circumstance, everyday, and most especially when the stress is running high or responsibilities threaten to overwhelm. I picked this breath, but I suspect any deep breathing would do.

Now my list is complete, and I am making a little curtsy to you, dear readers. Good night!

earth shaking

There I am. Pushing with all my might against a boulder that is not that much bigger than me, oblivious of the massive looming boulder above, in whose shadow I toil. Except if this were an accurate portrait, one hand would be gripping a chocolate chip cookie. Rather, one arm would be cradling a bucket of chocolate chip cookies, and I'd be experimenting with how hard I could keep pushing the rock with my shoulder or hip while maneuvering cookie after cookie into my mouth... while gripping my cell phone, on speaker, between my knees, listening to a little song while someone who may or may not be able to tell me anything helpful about Mike's treatment puts me on hold.

(Which is all very apt, since Tom brought the above card over today, along with a tin of perfect, freshly baked cookies).

Last week I talked many times to our employer, a manager at our insurance company, our case manager, a benefits broker, our doctors, our nurse navigator, a patient financial services rep, a medical advocate - that's all the people who come to mind just now but OMG believe you me there were a lot more - and for the most part none of these conversations brought me any closer to what we'd been increasingly desperate to hear about for three weeks, let alone understanding WHAT the HECK was holding things up. I push on whatever boulder presents itself in our path, without much hope of it budging, let alone clearing the way so that we might reach our goal - which, when considered in the context of this endless labyrinthine Kafkaesque shit is so, so simple - getting Mike the medical care that he needs. A leading international expert prescribed it; an independent physicians' review deemed it medically appropriate.

Essentially the problem is that our policy excludes any kind of experimental treatment, yet because of the rarity of Mike's disease there are no treatment protocols. So any treatment is considered experimental. You see the problem.

On Friday we were told that a solution to the impasse is in the works and will hopefully be finalized this week. And treatment starts tomorrow. Serious boulder movement. So why aren't I happier? Why am I still poised and ready for more Sisyphean frustrations?

Beatrice has been having a hard time. She crawls all over me, refuses help from anyone else, whines like a banshee, woke up crying last night, and is generally driving everyone crazy. On Thursday Mike picked her up at school. She fell on the walk home and scraped up her nose.

After that she emphatically refused comfort from everyone, walked into the house, and tearfully announced "I'm going to put my face into the couch until Mama gets home." When I walked in after work, half an hour later, she jumped up from the couch, still in her raincoat, and ran smiling to greet me. Finally. You're finally here!

(An aside: that is a lot of responsibility that sometimes I would rather not have.)

But geez. I want to put my face into the couch until Mama gets home too. 

My mom is fantastic and actually does make most things better. But when I say until Mama gets home I mean until Mama gets home. Until cancer flies out the window, until Beatrice stops whining, until life gets to be outrageously, completely NORMAL and things like after school activities and ear infections and work schedules fill up my worry space again.

I confess I can't imagine it.

I can and do hope for a new kind of normal though, one I can't anticipate with any specificity because I don't know what it will be like. Tonight, for now, I'm in position: ready to keep leaning into hard, heavy stuff to get us through the next round of medical intervention. Wish me luck.