Tag: Illness

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.

 

 

Michelle at The Green Study36 Comments

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.

Michelle at The Green Study51 Comments

My Misery Brought a Plus One

I was almost there. The sadness of loss began lifting and dissipating with the arrival of the spring sun. I acted like a grownup and went to the doctor to deal with my health anxieties. Spring break ended and my family returned to their respective daytime activities. The deck was cleared for productive writing, invigorating workouts, and getting my garden planned. It was a glorious five minutes.

canstockphoto46418801I’m writing here, shortly before I render myself unconscious with an ungodly amount of pharmaceuticals. I’m down and out with a head and chest cold which makes me dizzy and susceptible to laughing at my own jokes. It might be that I already hit the Nyquil. Nowhere on the warning label does it say I should not operate a keyboard.

This is life, as they say. They are assholes. It may be life, but in the moment, when my head feels like it has been split open and my voice is a croak interrupted by paroxysms of coughing, it feels like it is not a good life. It will pass they say (they can now shut their pie holes and return to bad faith arguments land).

canstockphoto181672.jpgSurliness is often my go-to place when tired, sick, hungry, breathing. I have made the execrable error of filling my life with positive people – all of whom I must avoid when surly. I like to let my surliness and self-pity run its natural course, without the shame of it could be worse quips being blithely tossed my way. Unnatural stoppage could turn my feral surliness into something worse – a reasonable, circumspect person who always seems like they have their shit together. That would be wholly unnatural for me.

For those of you who regularly read my posts, I am going to be okay. I received my biopsy result in which the doctor was playing fast and loose with the English language. It essentially said You don’t have cancer. Yet. See you next year. Precancerous cells have put me on a watch list. There are some minor lifestyle changes I can make to prevent further damage. And believe me, I’m making them. If you reach a point in your life when people need to regularly shove tiny cameras in your orifices, you make the damn changes.

Much of the joy has been drained from my life – if my life were all about eating delicious canstockphoto56388854.jpgfood. Which, to be fair, much of it was. Now I must get my jollies from smoothies with raw ginger and greens. No more spicy Mexican, onion-laden Greek, tomato-filled Italian food. I sleep on a wedge pillow, don’t eat three hours before bedtime, drink gallons of water, and stare morosely out the kitchen window, while washing another bowl of lawn clippings for my next meal.

I suppose I should be grateful that I was scared into better health. I’ve lost some weight, don’t experience heartburn, and will likely be able to avoid a lifelong drug regimen. Although, as soon as I began exercising better habits, I immediately got sick. It leaves a bitter taste in one’s mouth. But that might just be the kale.

Before I started writing this, I had in mind pithy comments to make about current events, reading I’ve been doing, and other random bits of wisdom. I would have sounded erudite and witty, I assure you. But my head is currently full of mucus. It might be better for me to have a lie-down and hope that the cold medicine doesn’t conk me out so soundly that I wet the bed. That’s life.

Michelle at The Green Study44 Comments

What’s Keeping Me Awake

Of late I’ve had an uncomfortable medical issue related to repeated heartburn. It’s gotten much worse and I have to go to the doctor. But not, of course, until I’ve googled myself into a full anxiety attack. It’s after midnight and I’m tossing and turning and just a little terrified – because so many roads lead to cancer and I’m 51 and I still have a teenager at home and I don’t want to die.

Several years ago, I had an irregular mammogram and I had to go back for another test. It turned out alright, but afterwards, I sat in my car sobbing for a good half hour. The palpable relief that I’d still be around for my kid made me crumble. After researching my latest symptoms, my insides are quaking with fear. My symptoms suggest that whatever I have, I’m about to go on a medical diagnostic journey.

Going to the doctor is like going to the gym. Getting through the door is the hardest part. BarrenTreeBWI’ve been fortunate up to this point in my life to have the luxury of infrequent visits to medical establishments. The downside is that nearly every interaction I have with medical personnel is when something bad is happening. I always leave with a new syndrome or condition, feeling much worse off than when I arrived.

When you have the luxury and fortune of good health and things start to go awry, you realize what a coward you are. I’ve never had a dental cavity – a combination of genetics and compulsive brushing. I imagine the first time I get one, I’ll become the biggest baby ever. Yet I know people who have chronic conditions, who have to line up their medications every day, and who have more replacement parts than original and they are still wildly successful at being human beings.

Here I am, though, so filled with fear and anxiety that I cannot sleep. And I know logically, it will only make things worse if I am tired. How do you find a sense of peace or calm in all of this? How do you let go of the visions of death that dance before you? How do you not tearfully hug your husband and daughter as they go out the door to have their Mondays?

On the outside, I tend to under-react in times of crisis, even as my brain is riddled with anxiety. I imagine tomorrow morning will be like any other day. I will close the door behind my family and begin to count the minutes to calling the doctor’s office. They will ask who my primary physician is and I will mumble “I don’t know”. I have a feeling that by the time diagnosis is over and I’m on some sort of treatment plan, cancer or not, I’ll know my primary physician’s name and a few specialists’ names as well.

It is my nature to distance myself, to stand outside of myself in the middle of fear. It is why I’m writing now. Writing gives my story, with all its unanswered questions, some shape, a measure of control. Or at least the illusion of it. Over the last month, I’ve been reading a lot of the classic short story writers and their bios. Quite a few of them were dead in their 40s, with hundreds of stories written. But they never felt the pride of that. They just did it until the TB or syphilis took them.

In the midst of my fears, not having been published turns out to be the least of them. Sometimes it’s good to have those kind of realizations, when all your priorities suddenly sift away, leaving only the large, important things. For me, it will always be my family.

canstockphoto1218783I’d been feeling depressed over the last month or so – the side effect of a long winter and the loss of my mother-in-law a few months ago. I’d been wallowing in self-pity about my inability to be a prolific writer. Sporadic writer is more like it – whinging on about being a caregiver of sick cats, of having no sense of self beyond the drudgery of laundry and dishes and ferrying people about. And how it felt like such a big deal to allow my brown hair to be sheared off to reveal the silvery gray beneath a few weeks ago. I am a little ashamed about that now. How trivial and superficial my anxieties can be.

Writing this reminds me of the ability I have of finding the upside to things. This fear, this insomnia-ridden anxiety, shoves aside my petty concerns, makes me open my eyes and see what is true. I hope I remember this in the cold light of morning, watching as the clock ticks closer to office hours.

Michelle at The Green Study41 Comments

Flu as Poetic Inspiration

canstockphoto1160815When I get sick, things get very, very dark in my mind. I spiral downward into the morose thoughts of a depressive, luxuriating in my misery, knowing it is likely temporary. In the throes of corporeal suffering, I often turn to poetry. Poetry seems to speak when my sore, raspy throat produces nothing but squawks.

Mysterious, isn’t it?canstockphoto14211413
A turn of light
Above some stumpy
Mountain,
The way a screen porch
Frames a bunch of haggard trees,
The way we squint

At what we love.

“Honeymoon” by Cornelius Eady
Hardheaded Weather

Between nose blows and cups of comforting tea, I read Jane Kenyon and Pablo Neruda and an old favorite, William Wordsworth. Poetry of death and aging yields unexpected meaning. Mary Oliver and W.H. Auden become my muses. In my own writing, I use more expressive and melodramatic language, likely influenced by Nyquil and misery. Characters are more likely to be frail or murdered in the novel or story I work on for the day. Vonnegut seems a lot funnier.

canstockphoto23029728Ink that enchants me,
drop after drop,
guarding the path
of my reason and unreason
like the hardly visible
scar on a wound that shows while the body sleeps
on in the discourse of its destructions.

“The Blow” by Pablo Neruda, Translated by Ben Belitt
Five Decades: Poems 1925-1970

I rarely write my own poetry. Not since I wrote an angsty poem about a dead high school classmate have I been interested in writing verse. It was put in the high school yearbook next to the picture of a beautiful 16 year old girl. The poem was quite awful. I don’t know what the adults in charge were thinking.

for forty yearscanstockphoto10667307
the sheets of white paper have
passed under my hands and I have tried
to improve their peaceful

emptiness putting down
little curls little shafts
of letters words
little flames leaping

“forty years” by Mary Oliver
New and Selected Poems, Volume Two

I once wrote a Haiku about my cat in a sunny window. My words formed the shape of a cat. I was 10. Since then, my words seem to take less shape. This is the moroseness of a flu bug. Other people’s writing always seems better than my own. But it’s not a bad thing to turn down the volume of one’s own narcissism and listen to what words have been assembled by others.

Dcanstockphoto19838329ead my old fine hopes
And dry my dreaming but still…
Iris, blue each spring.

Ome Shushiki
Women Poets of Japan by Ikuko Atsumi (Editor), Kenneth Rexroth (Editor)

With my desire for brevity and clarity as a writer, it is odd that I shy away from writing poetry. But it has always seemed a magical art and that I am not ephemeral enough in my thinking to be lyrical. I want to leave the magic unrevealed. I don’t want to know how it works. I don’t want to tinker with it and take it apart. I just want to accept its purpose in my life to inspire, comfort and remind me of the beauty of simple language. Especially when nothing else penetrates the fog of snot.

If you would leave off your play and dive in thecanstockphoto3977052
water, come, O come to my lake
Let your blue mantle lie on the shore; the blue
water will cover you and hide you.

Rabindranath Tagore
The Gardener

See, I would simply write “Skinny dip, yo.” But what an entirely different frame a poet can give the scene.

For now, I must languish in bed,
wrapped in yesterday’s clothes that
wend around me like old phlegm.

No, I’m not a poet. And yes, I need a shower.

Here are a couple of online blogging poets:

Heed not Steve‘s haikus.
He amuses me often,
which doesn’t take much.

Kathryn combines artistry and poetry.

What’s your favorite poem or poetry on or offline?

Michelle at The Green Study15 Comments

When Your Body Betrays You

I’ve been sick with a flu/cold/plague for the last week. When I get sick, I feel very, very sorry for myself and I say this, knowing full well that there are people suffering from much more serious and long term illnesses. I do have some perspective, but not necessarily when I’m hacking up a lung or blinded by a sinus headache.

My family of origin tends to be healthy as horses, mental disorders aside. For many years, I felt a level of disdain for complaints of sore throats, backaches and migraines. Part of it was being young and healthy, the other, an arrogance derived from never feeling the betrayal of one’s body. Karma can be a great teacher.

Following my child’s birth, I went into a postpartum funk, related to hormones and to the fact that delivery had gone completely the opposite of what I had imagined. It was the first time my body let me know who was in charge. I had read all these wonderful books on natural birth. Some of the anecdotes spoke of the experience being nearly “orgasmic” (hear loudly my snort of derision). I worked with a midwife, but in a hospital setting. I was 37, so it seemed like a nice middle road.

I will not go into the torment that was the nearly 20 hours of labor, except that I spent most of it “naturally” (if it’s natural to gasp swear words while sitting on a yoga ball), and the last 4th induced by a cocktail of drugs and 1 hour completely, blessedly stoned. Things went awry in a big way and a team had to be brought in, with lots of equipment. The word “distress” was tossed around. I ended up having an emergency Caesarean and staying in the hospital for five days. My husband, who was conscious throughout, was traumatized.

When we returned home, fortunately with a healthy and loud baby, I was depressed. Recovery from a C-section versus “an orgasmic experience” was like being warm and cozy and then having a bucket of ice water dumped on you. It was painful and shocking. Meds made me sick and I was trying to nurse my new baby. I cried a lot.

It took me a little while to figure out that I felt ashamed that my body had failed to do its thing naturally. Yes, on the scale of life events, this was minor, since the end result was a beautiful baby girl. But there’s no accounting for emotions and hormones.

It was the beginning of physical understanding and dare I say, compassion for the trials and tribulations of the human body. I also gained a huge appreciation for modern medicine and health insurance. My daughter and I would not be here, if it weren’t for the machines and doctors that could navigate through this particular crisis. I would not have been able to work from home part time and be with my daughter, had it not been for the insurance that covered 70% of a whopping $22,000 medical bill.

I was one of those people who considered the body merely a container for my brain. The disconnect started in my teens with typical gender issues that made me not like or even remotely appreciate the work my body did for me. In my 20s I abused it mightily, but it recovered with the same bounce in its step, regardless of hangover or sleep deprivation or junk food intake or firsthand cigarette smoke.

In my 30s, it started to require more attention. I quit smoking and drinking. I became concerned with cholesterol, triglyceride and blood pressure numbers. I started reading up on homeopathic remedies and exercise and nutrition.

Now, in my 40s, my body is the crystal ball into my future and I’m paying close attention. It needs more motion, better nutrition, and more sleep. I’ve developed more compassion and respect for its limitations. I’ve had three fairly painful, serious injuries in the last three years. My frequent exposure to elementary aged beasties has challenged my immune system.

These days, I have to pull myself back from running when I have bronchitis and from doing taekwondo when I have a pulled quad. I try to stay focused when I do yoga, so that my mind and my body feel united, so that I honor how it moves me through my day, holds my child, types these words. The greatest lesson is not what my body can do for me, but how I can take care of and respect it. This is where compassion for the physical challenges and illnesses of others starts to grow – when you learn to honor your own.

Michelle at The Green Study17 Comments