Falling Apart, Blogging in Place

It’s been nearly a month since I’ve written here. For some people, this would be an indicator that they were being wildly productive elsewhere. For me, it runs parallel to everything else in my life. So I return, disorganized and unkempt, my decompensation complete after a year of crises.

canstockphoto8316983I woke up two weeks ago feeling as if every joint in my body was inflamed. My hands were stiff and painful. There was stabbing nerve pain in my knees. I walked as if I were 82, not 52. It sent me into a depression. After so long of keeping a stiff upper lip, of caregiving, and chauffeuring and tracking down medical research and working hard to make sure everyone in my circle was cared for, fed, loved, paid attention to over the last year, my body and brain said enough already.

Writing stopped altogether. I buried myself in books, frequent naps, and long stares into space. I walked a lot and when my feet hurt and my eyes stung from the cold, I walked some more. I slowly unraveled the strands of my depression. It’s February in Minnesota. I consider it the worst month – 4 months of winter behind, 2-4 months ahead. As I’ve written about numerous times, this last year was situational hell with medical crises and family losses. And menopause has got me in its grip – miserable and unpredictable. So, there are reasons.

canstockphoto29330425.jpgIn this Instagram marketing world, there’s a temptation to wait until everything can be repackaged into a neat story, complete with a moral and pics to prove it. But sometimes the only way to find one’s way through the story is to write about it, to just start telling it. We’re in love with stories of redemption and miracle outcomes, but those are movies and reality shows and late night commercials, not life. Life continues in all its uneven messiness, where the best victories are slivers of light – moments when we are able to exhale.

Things are quiet now. My daughter’s health is stable and we have a month or so before the next battery of tests. I’ve got a long list of self-care things I must do to regain my health and sense of purpose. I approach everything the same way (which can sometimes be an issue): Make a list of problems I’m trying to solve, do research, break it down to concrete steps, line up resources, and start walking the plan.

It’s time to exhale.

Escaping Reality: Variations on a Theme

There was a moment in time a couple of weeks ago when I was binge-watching episodes of Leverage while playing Freecell, eating, checking my email and text messages, and rage-reading Twitter feeds. I had a brief insight, a moment standing outside of myself, seeing a kind of desperate escapism at play. I was numb, distracted, and when I stopped all activity and sat still – utterly, utterly depressed.

It was time to wake myself up, to stop sleepwalking through my emotions, and to take some responsibility for the quality of my life. Compassion allows for the fact that this last year was the worst of my life, but when does self-care lurch into self-medication and then stagger into self-destruction? For me, it’s when I can’t remember my days. What did I do yesterday? I have no idea.

It’s a hard road back from the Land of Numb. I take preventative measures – delete the games from my computer. Log out of everything so I’m forced to log in – one step in mindfulness. I make myself get back into an exercise routine – the pain and muscle aches end the detachment from my body. I force myself to do one activity, one step at a time. I do it initially, resentfully, repeating the mantra it doesn’t matter if you feel like it, just do it.

*****

I started to think about distraction and escapism and self-care and how it all gets conflated and confused. There’s a whole economy built around the idea of self-care with few definitions on what that truly entails. The Venn Diagram that includes self-care, distraction, consumerism, entertainment, and addiction is a giant black circle with slivers of light at the edges.

10639Our brains are so overwhelmed not just by our own human predicaments, but by the constant influx of information and messaging. Maybe the paralysis of mindlessly entertaining ourselves is all we can manage. I think about Barry Schwartz’s The Paradox of Choice. We have so many diversions to choose from, so many choices to make in our lives, that paralysis comes rather easily. As Schwartz explains, even when we make choices, our satisfaction is less because if our choice is not great, we think about all the other ones we could have made.

I’ve taken to asking myself a lot of questions about what I do with my time. Does this support my intentions for myself? Do I feel energized or drained after this activity? Is there something better I could do? What am I avoiding? There are times when taking downtime is a necessary part of life, to let your mind zone out or wander, to be purely entertained or engaged. But how much time? When does comfort become a coma?

*****

48895108I had the pleasure last week of reading David Puretz’s The Escapist, which was sent to me by JKS Communications. The protagonist/anti-hero is self-medicating, incapable of dealing with the reality of his life and sets off to find his father, a veteran of the Iraq War. The protagonist is alternately self-destructive and introspective, but learns and experiences enough to make this a satisfying read.

Debut novels can be hit or miss and I was wary of reading another drug-fueled odyssey, which is usually the purview of male writers – especially those of the David Foster Wallace era. In The Escapist, the anti-hero is just sympathetic enough, the writing is strong, and the story is engaging. Bonus points for lack of misogyny and rare masturbatory or bodily effluvia references (not a prude, but how much does one need to know about sputum and semen?).

Self-medication as escape is nothing new. I come from a long line of self-medicators – booze, smoking, drugs, more booze. I sobered up in my mid-20s, gave up smoking when I was 30, but there was always food and an addiction to running shoes and books. And for this writer – the productivity-killing need to research. For some people, it’s sports or religion or patriotism or political ideology or fashion, whatever makes the answers easier, life more palatable, something to subvert our fears and anxieties and any other untenable emotions.

Some of these things are perfectly healthy, but anything can be a way of detaching from emotion or reality. I’ve become intensely curious about life with all of those things stripped away. Our addictions, distractions, comfort blankets, the groups we identify with, and the cozy philosophies – who are we without them?

*****

18209520Writing is an escape of sorts, but these days I don’t know if I’m running away from or toward it. I guess it only matters that I’m doing it, anchored in a moment, neither here nor there. I keep thinking about the path and how a writer lives two lives, moving in the world and then living on the page. And that my fears have often allowed one to supercede the other.

I’ve started reading The Authentic Life: Zen Wisdom for Living Free from Complacency and Fear by Ezra Bayda. The first chapter was all about facing fears head-on and he ends it with a prescient quote from Chinese Zen Master Wu-Men: When the mind isn’t clouded by unnecessary things, this is the best moment of your life. 

Wishing you some of your best moments in the week ahead!

The Troubled Path

Almost eight years ago, I published my first blog post. It came on the heels of challenges I had created for myself – training in Taekwondo, learning how to climb rock walls, pushing myself to write publicly. I’ve given up martial arts and rock climbing, but I’m still writing. My challenges are different now. They usually involve trying to get a good night’s sleep and not letting my anxiety overrun my sensibility.

12934562I just finished reading Dinty Moore’s The Mindful Writer: Noble Truths of the Writing Life. It’s a short, inspirational read – a reminder of some basic tenets of being a writer. I’ve been thinking a great deal about a quote in the book by Ezra Bayda: Your difficulties are not obstacles on the path, they are the path.

My path in 2019 was the most difficult of my life. It started off with a family death, spiralled into personal health problems, the loss of a pet, crescendoed with my child’s medical crisis, and has now found an uneasy holding pattern of doctors’ appointments and testing. I’d begun sleeping, finally, in this last week for more than three hours at a shot, loaded up on melatonin, soothed by a white noise machine. Maybe, my brain said, things will get back to normal.

We found out yesterday that the chemotherapy drug refill my daughter needs is out of stock. One company in the world makes it. I had a panic attack while on the phone with the specialty pharmacy. My heart was pounding louder than the hold music. How often had I been here in the last year? Anxiety steamrolling me, brain racing to problem solve, catastrophizing in “what if” land.

Normal? What the hell was I thinking?

“When/if…then” thinking always catches me off guard. I realized that I’d been telling myself when things got back to normal, I’d get back to a stricter writing practice. I’d exercise more regularly. I’d be more careful about what I ate. I’d catch up on correspondence. I’d sleep better. I’d be able to think more clearly – be less hostile, be more compassionate – be a better person.

canstockphoto14061639While I’m not someone who is inclined towards drama, it occurred to me that this waiting is a living death. Because what if “normal” never returns? I’m getting older. My peers are getting older. Illness, death, change – it comes to us all and it accelerates as one ages. Time is a finite resource for a human being.

This morning, I re-read a 1993 Paris Review interview of Toni Morrison. She talked about her early writing life. She was a working single parent with small children. She wrote in the early hours and no matter her level of organization, she always ended up writing on a small square of her desk or table. Within those limitations, she created beautiful works of art.

I think about her writing in that little space with limited time – creating a universe of love, joy, hate, pain – weaving together the threads in a poetic yawp to the world. We can make choices in the spaces between troubles and limitations. I’d gotten so overwhelmed by the big, scary stuff that I’d stopped making the small choices that would bring me joy. Writing in that 15 minutes before the next doctor appointment, going for a short run, napping near a sunny window, digging out a recipe book and cooking a good meal, writing a thank-you note to a friend, sinking into a book.

canstockphoto2904213It’s hard to unravel the idea that to write, I don’t need a huge expanse of time, a clean desk, the recommended amount of sleep, an uneventful day or ten. It’s hard to believe, that after so many years of an interrupted life, that I still allow circumstances to override this visceral need to put chaos on paper. This forgetfulness is always how I arrive here: depressed, cynical, often simmering with a vague, low-energy rage.  Writing is how I survive, even thrive when life eddies about me.

So this path, full of potholes and thorny briar patches and distracting squirrels, is the path. And the only way forward is mindfully, pen and notebook in hand.

Side Effects

There’s a quip about the cure being worse than the disease. No need to tell me that at 2 a.m., when my child is keening with stomach pain. We’re in the wilderness now – trying a relatively new drug not tested on children, for rare tumors with no proven treatment path. My kid is filling up the bingo card of side effects. And each day, I am supposed to hand her the drug that does this.

My husband and I sit up with her for the next two hours, hoping that the cramping recedes quickly. Eventually, the pain passes and she is finally able to fall into a deep, restful sleep. I am wide awake. I’ve sent a message to her doctor. This is untenable for the long term. Any ideas?

canstockphoto10766394Now that she is comfortable again, I am introspective. What am I becoming? I don’t sleep well anymore, even when a night is uninterrupted. I have copious notes, dates and times of this medicine, that reaction, what works, what didn’t. I’m on constant alert, vibrating with anxiety and now, caffeine. My stress hormones have cozied up to my menopause hormones, so every five minutes, I flash into a drippy sweat.

I’ve read every article and study I could find about the drug, the tumor, the side effects. After reading about one side effect treatment regimen, I asked the doctor if we couldn’t try a particular drug. Reading the same article, the doctor said sounds like it might be an option and wrote the prescription. Criminy, they realize that I only have a liberal arts degree, right?

But this is the speed of science. As quickly as one protocol gets established, four more options pop up. That’s a good thing, but it means everyone has to be read in, constantly.

canstockphoto17182715.jpgWhile I consider myself a relatively intelligent person, I’m no genius and the fact that our role as parents in her care is so outsized, really freaks me out. It has served me well to stay in the moment, except in the moments after a crisis has passed. Groundless again. My brain doesn’t know whether to stay on high alert or to relax. I am afraid to relax, as if my tension were a shield against calamity.

I think about the beginner’s mind from Zen Buddhism. If I looked around me, with fresh eyes, at this very moment, what do I see? My daughter is sleeping well. As is Pete, our old tomcat, with his little snores on the floor, near my feet. Snow is falling outside, muffling the city sounds. I’m tired, but healthy. The house is warm and smells of coffee and last night’s stew. My husband is able to work from home after the long night. I explore this moment, writing here, grateful that I still can. Open your eyes. Breathe.

I was thinking about advice on recharging phone batteries. With lithium-ion batteries, the lifespan of the battery doubles if you partially charge and discharge the battery. Then there’s parasitic loading – when you are using an item while it’s charging. It can induce mini-cycles, causing part of the battery to deteriorate at a faster rate. The writer in me wants to wring a metaphor from it.

canstockphoto2478779.jpgBeing a caregiver or a parent can be like this. You have to keep going, no matter how low your battery is. The only protection against deterioration is finding the time when you are only charging. The moments between crises have to be more than just time when bad things aren’t happening. This is tricky – the space between shaking your fist at the sky and noticing how beautiful it is. Enjoying the buoyant, cool water just before you feel like you’re drowning.

So this morning, I practice. I fold laundry at the kitchen table and watch the snow fall. I listen to Dar Williams sing “After All”. You catch your breath and winter starts again…

and the long night falls away.

 

 

Groundlessness and the Cultivation of Courage

I return here, unsure of how to proceed. Writing this blog has always been an exercise in being present, but distant. I’ve written from wherever I’m at, but writing itself, putting life in words, is an exercise in putting emotions at arm’s length. My family is having its worst best year and it will carry on into next year and perhaps, beyond. This is unfamiliar territory, this landscape of worst fears. My anxieties have always nibbled at the edges, but now they are front and center.

canstockphoto8606963.jpgAs I’ve written in previous posts, my teenage daughter has been seriously ill. After two major surgeries this year, we are now moving into the chemotherapy stage. I don’t want this blog to become a recitation of medical victories and setbacks, but now I understand why people write them. It becomes your life. How is it possible to write about anything else? In fact, how is it possible to do anything in the midst of this? I’ve been unable to focus enough to read, to really write much, to do anything but read dense medical articles and try my best not to be steamrolled by what if, what if. It’s funny that the what ifs never include positive outcomes. How very me.

Perhaps life would be easier if I believed in higher mechanics at work. But the pain of seeing my bright, beautiful girl struggle makes it better that I don’t. The rage and bitterness would consume me. I’d rail at the sky gods and pulpit liars. I’d be unforgiving. Thoughts and prayers indeed.

I’ve always been drawn to the tenets of Buddhism and Stoicism, lightly adhering to the idea that what is here is it. What is now is now. Never have your life philosophy tested. You will discover a derelict home and how little you’ve done to maintain it. You’ll find there are foundations of styrofoam and duct tape, leaky pipes, and an overabundance of distractions/fixes that no longer do the job. You’ll slap up a foreclosure sign and walk away. Time to start over.

Yesterday I read a chapter in Pema Chödrön’s When Things Fall Apart: Heart Advice for canstockphoto3326225Difficult Times and it hit me – nothing I was accustomed to doing for comfort/distraction/numbing in my life was working anymore. I was suddenly and sharply aware of a nightmare I have of falling off a cliff, before I jerk awake in a sweat. The sense that all that was before and all that would come after no longer mattered. But there is no waking up, no relief to discover I’d just fallen asleep on my arm, drooled on my pillow. I’m awake and groundless at this very moment.

I grew up in poverty, plagued by its cohorts alcoholism and domestic violence. I struggled to put myself through college by serving in the Army for four years. I quit smoking. I overcame years of dysfunctional relationships to meet and marry a wonderfully kind and smart man. I went through a dangerous labor and delivery to introduce my daughter to the world. I trained in martial arts in my 40s – bruised and injured sparring with behemoth 18-year-olds. But nothing, nothing in my life is as hard as this moment right now.

How does a person live in this space? I’ve asked friends who have had similar life experiences. How did you do it? The blank look on their faces said it all. They just did what they needed to do. I wrote in my last post about the exercise of stating exactly what one is doing to bring the current moment into focus. That little trick stopped working a few days ago when I found myself mentally shrieking Woman folding clothes while trying to fend off another round of laundry room sobbing. It started to seem more like a defense against thinking unpleasant thoughts.

canstockphoto8192278There is, at the heart of all this contemplation, a concrete reason to keep learning how to work with my own mind – I will be a better person, a better parent, a better partner if I can live well with uncertainty. My thinking brain is a construction site – all activity and planning and loud machinery. It does not provide solace. It does not expand compassion. It does not cultivate courage.

So I’m learning all over again – how to meditate, how to silence the raucous noise, how to sit still. This insistence is also an insistence to be courageous – to recognize I have no control, no soothsaying powers, no magic remedies. To face that no amount of chocolate or bingewatching or reading or writing or housecleaning will distract from the sharp edges of my life.

I re-read this post and thought well, this certainly sounds like you’re making things canstockphoto11582099about you, you narcissistic twat. To write about my daughter at this point would invade her privacy and likely shred me. She is who I want to be if I ever grow up – self-possessed, funny, and honest. I take so many of my cues now from her. Still, it’s not on her to make me a better person. I have to do the work. I have to practice. I have to be mid-air, still able to breathe, still able to comfort, still able to laugh. I’ve been in flight, trying not to notice the lack of a parachute or wings. The trick is to not look down.

Sources that Have Been Helpful to Me:

Already Free: Buddhism Meets Psychotherapy by Bruce Tift

When Things Fall Apart: Heart Advice for Difficult Times by Pema Chödrön

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard

The Happiness Trap by Russ Harris

Peace is Every Step: The Path of Mindfulness in Everyday Life by Thich Nhat Hanh

The Little Book of Stoicism: Timeless Wisdom to Gain Resilience, Confidence, and Calmness by Jonas Salzberger

Human in Chair, Writing

Life has started to really take its toll on me. I’m more tired, grayer, weightier, unfocused. There was a brief respite where my ego had time to rise – to think about goals and ambitions and productivity. Productivity. I’ve come to hate that word. It makes us all sound like robots. But robots don’t have children who get tumors. Again. Robots don’t watch their friends go through chemo treatment or their parents suffer from Alzheimer’s or partners in chronic pain. Robots don’t wake up each and every day wondering what that day might hold.

If it sounds as if I’m getting a little dark, stay with me. There is light. Eventually.

This has been a year of unending anxiety and constant resetting of expectations and plans – more than the usual chaos of being human. I found myself constantly saying I just need to find my center. I just need solitude. I just need a few days without menopausal shifts. A week without anxiety. A few nights of good, solid sleep. Then I will feel better. Then I will feel like me. Normal. Balanced.

Pardon me while I break into hysterical, teary laughter.

Depression has permeated my brain. We’re in the middle of yet another medical crisis – a drawn out one that will take months to resolve and may have lifelong impact. A parent’s nightmare. Trauma in slow motion. And still, I rise, I demand, get your shit together, Michelle. It’s an unkind, harsh voice. Who needs enemies with a brain like this?

7902654I turn to some old friends in the form of books. I pick up Toni Bernhard’s How to be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers. I read it a few years ago, while supporting my mother-in-law as she wended her way through Alzheimer’s. It was a perfunctory read. Lately, I read with hungry desperation. Tell me how to cope with this. Give me answers.

Sometimes a message reaches you at just the right moment, when you’re an open wound in need of salve. The author of How to be Sick is chronically ill with myalgic encephalomyelitis/chronic fatigue syndrome. I am not chronically ill, nor I hope, is my daughter, but this year has been a chainlink of catastrophes. Situational depression is to be expected. My little family has felt this in a myriad of ways. But still, we trundle on and we play a lot of card games.

There’s a practice I learned from the Bernhard book that I’ve started using. I’d been swimming in the disappointment of expectation. There was a brief space in time when everyone was well, when routine seemed possible. Then another medical scan revealed its terrible news. Immediately anxiety wrapped its death grip around my brain, as it played out every future scenario. Stuck in the past, throttled by the future.

canstockphoto16849001
The only tolerable memes.

If there’s anything that annoys me more, it is that every idea or thought is memed now. The be present exhortation is on coffee mugs, t-shirts, people’s email signatures, and one of the first pieces of advice that pops out of anyone’s mouth who imagines themselves to be wise or enlightened. Like a sulky teenager, I tend to react badly to what everyone else says or does. I’m likely to do the opposite, even when it shoots me in the foot. This time, though, I just have to ignore the commodification of an idea and focus on what it really means.

The practice is this: state exactly what you are doing in the present moment (Bernhard credits Byron Katie with this practice). As a writer, I find this interesting and sometimes amusing to do. Woman standing at sink, washing dishes. Person raking leaves. I like the paucity of words, the practice of narrowing the world down to subjects and verbs – seeing the world as it is actually happening, where nothing is before and nothing after. People easily say be present, but this is a practice that requires mechanics. Same goes for meditation. You need the mechanics to start you down the path. Focus on your breath. State what is happening.

38746152I started reading Ross Gay’s The Book of Delights yesterday. It reminds me that every single moment is filled with life – that there is beauty and curiosity wherever you are, but you have to be there, really there to notice it. I watched as my daughter slid in and out of the PET scan machine. She was swathed in a white blanket and my mind shot back to her crib nearly 14 years ago. I looked down at her round, rosy-cheeked face, her brilliant blue eyes, and her dark, spiky hair. At that moment, I wasn’t seeing radiation warning signs or hearing the beeping of machines. But that memory came with a terrible longing and I could feel the tears well up. It was bad time travel. Woman watching over daughter. Then, but more importantly, now.

So I practice. I practice reminding myself of what is. I practice deep breathing. I try not to be so cruel to myself. I write here, because it is my duct-taped practice of Buddhist Tonglen – giving or sending, receiving or taking. When I say the hard parts out loud, I feel the suffering recede. I see that we do our best, all of us. I see that there is beauty to be found in this very moment, in you, in me, in the world. We just have to open our eyes to what is in front of us.