By the skin of my teeth I escaped hospitalization. Again. Not that I meant to. The hospital room was waiting for me and I went to clinic packed with a suitcase full of comfy socks and my rattiest most soothing sleepwear. Yet here I am, writing from home with the giddiness of a prisoner who slipped through an underground tunnel when no one was looking.

Sun, how bright you are. Bed, how comfortable.

But like any worthy fugitive, I constantly glance over my shoulder, waiting to get caught and dragged back in. I wasn’t sent home because of any improvement. Lungs: my numbers were worse. Again. I was sent home with oral antibiotics and an order to repeat the test in one month. I’ve won abeyance, not escape and certainly not freedom. Liver: no failure. Yet. Ultrasound every six months. We’ll keep an eye on it. We’ll wait and see.

I’ve started to recognize how difficult it is to answer the question How are you?

How am I? I don’t know. Even this simple question has become complicated. All I know is that life, and death, happens in increments: moment by moment, step by step; one cell building upon another; one cell destroying another, slowly, delicately, minutely. Life rarely happens in the tidal and definite parting of the seas, but more often in the small moment, Lot’s wife quietly turning her head, chin over shoulder, to look back. Difficult to measure, name, contain, assess with certainty.

How am I?  We’ll keep an eye on it. We’ll wait and see.

I’ve become quiet in the past weeks. Turned inward, unsure if I want to continue putting myself out in the world with my little health dramedies, my I, I, I. I finally understand my life will always be peaks and valleys of health crises and healings. I no longer want to document the process, because it all boils down to moment by moment, we’ll wait and see. There’s no mystery: my body will betray me and then it will heal. Until the day it doesn’t.  The End.

A dear friend recently sent me a book by Sarah Manguso. I highly recommend it. I spent most of the book saying Yes. Yes. Yes.  Also, thank you. I’d like to leave you with a few of her words:

I grew used to being sick and looking forward to recovering. Then I grew used to being well again for a short while, knowing I’d be sick again sooner or later. Then I grew used to having no prognosis at all, because with a mysterious disease, all things are possible.

My existence shrank from an arrow of light pointing into the future forever to a speck of light that was the present moment. I got better at living in that point of light, making the world into that point.

***

I feel grateful to Manguso for finding words for my daily exercise: navigating the contraction and expansion of the speck of light I inhabit. Sometimes I am only able to deal with the very moment I’m in. This needle, this doctor’s mouth, this result. Sometimes, I feel my life expanding to the future, to plans, to possibility. During my blog absence, although I retreated from the world, I was busy with my family, writing, health or lack of it, the anniversary of ten years of marriage, and the decision to apply to graduate school. Contraction, expansion. One is not necessarily better or worse than the other.

As Manguso writes: Why is it important to me to know the beginning and the end of this particular decay I think I’m writing about–which is just part of  my own whole decay? And couldn’t the decay be called by many other names–for instance, my life?

***

Thank you for being part of my journey–and my decay–this past year. Thank you for giving me one of the happiest, most fulfilled years of my life.  Thank you for allowing my cells to mingle and effervesce with yours. I’m ending this chapter to begin another, to expand and contract, arrow of light, speck of light, incrementally, slowly, very very quietly.

I hate Old Person stereotypes because all my grandparents were or are some of the most vibrant, energetic, inspiring and interesting people I know. But with apologies to them,  I’m going to indulge in the stereotype a bit. You know that Old Person, the one who can’t hear well and turns up a hearing aid when you call, the one who chides you for not calling enough, then goes on to list the litany of aches and pains and daily complaints? Yes, well this blog is turning into an Old Person. Speak up, dearie, I can’t hear you.

The appointments: good, because I’m writing this post from home and not the hospital. Good because I won’t be having sinus surgery any time in the very near future.

Bad because my lung function went down about 15%. I’m not surprised because I’ve been feeling the absence of that 15%. With a lung function that likes to hang out in the fifties on a good day, 15% is a significant difference; but for now, no iv antibiotics. Just increased treatments.

Bad because an issue that seemed to be taking a nice long nap for the past three years has woken up, wailing, red-faced and hungry. This means more tests and doctor visits. This means more worries. This means more bad dreams, awake and asleep, about the monsters that fester and bubble in my murky, unhealthy depths.

After the appointments which I walked out of feeling exhausted, relieved, grateful, scared, sad, and frustrated, I told S: I just want one break.

One. Break. One month (actually, confession: I said one year….greedy)  without needing to think about health or  without needing to maintain my body so intensely only to operate at a sub-par level. One without worries, without constraints, without the constant body scan. How I would love a single day without medicine. Before I take a single bite of breakfast every morning, I’ve already utilized eight medical interventions.

I’m going to crawl into a cave for a bit. I’m going to retreat, indulge in some denial and silence, and be sick in private. I’m going to figure things out or work things out or punch things out on a punching bag or maybe paper. When I return, there will be no more health reports. I’m done with the litany. They taste like prune juice. Bingo, though, I’ll always love.

I’m tired, yes, and a bit worn out. But I’m also very blessed, and not a day goes by without thanking God (okay, with a bit of an eye roll)/universe/source/ creation/luck/fate/destiny/randomness/the great whirling dervish of life for the gifts I’ve been given. You are most certainly on my list of gifts, yes you, all wrapped up in your skin and the bow of your bright eyes and your wild horse thumping heart that keeps me from feeling too alone.

————————–

Today’s Poem is for the gray and the gratitude.

Try to Praise the Mutilated World by Adam Zagajewski

Try to praise the mutilated world.

Remember June’s long days…

{whoosh}

That’s the sound of men rushing out of the room. Almost ten years of marriage and I’ve finally learned the quickest and surest way to find alone time: What are you thinking about, darling husband? Tell me what you’re feeling.

So. Feelings. Other than the bone-crunching desire to slice off the penises of Penn State powers-that-be.

Nervousness. Hi-ho, hi-ho it’s back to clinic I go in a few days. I’m working through  my nerves with deep breathing calming images denial lavender tea a few good books.

If writing is one of the great pleasures and necessities of my life, reading is the place where it all began.

My family once road-tripped through the US. I spent the entire  vacation curled up in the back of the wood-paneled station wagon with a pile of books. My mom and dad begged me to look out the window. I insisted I was looking out of a window.

My beloved fifth grade teacher would go to the public library and handpick books she thought we’d love. I’ll never forget the feelings of excitement and pleasure on the days she came into class holding her canvas tote bags filled to the brim with hardcover selections. I’m sure the bags were heavy and I’m sure she worried about library fines, but she gave us that joy every two weeks.

Poet and writer Edward Hirsch does a good job explaining the feelings I have for reading:

Reading has been a deeply liberating experience for me. Like many of us, I feel as if it has given me most of my interior life and delivered me to myself. It has also taken me to extraordinary places where I otherwise never would have traveled. 

I’m also feeling fortunate. I’m lucky to have the virtual company of a circle of women who share these consuming passions with me. About two weeks ago,  I received a letter and a gray bracelet in the mail from Teri. The bracelet is stamped with three letters: FTF. Finish the fucker. This bracelet is gas in my tank, sun on my seeds, a little love incubator for my literary hatchlings. The bracelet is rumored to have magical powers which I can solemnly attest to…since receiving this gift I’ve had two more pieces accepted for publication! Forgive the exclamation point and know that details (and links!) are forthcoming. Finish the fucker, indeed.

A few days after I received the charmed bracelet, I opened my mailbox to find a manila envelope from MSB. Inside of the envelope was a book of poetry by a poet whose work was completely unfamiliar to me. I leaf through his pages and find myself submerged in another world, feeling grateful for another “window” to look out of and grateful to know someone who sees a treasure chest between two paper covers and thinks of me. Even better, MSB’s gift came with a card made out of one of her black and white photographs. Two loaves of salt-dusted baguettes. I feel nourished.

As if all of this isn’t enough, I kid you not, today my magical mailbox contained another gift. (Yes, I’m feeling sort of embarrassed by this shower of love). This recent gift puts a bit of a tangle in my secret admirer theories. Last time I received a book in the mail, I had no idea who sent it but I thought I had a hunch. To this day the secret admirer remains a mystery. But this time (evil laughter), though the gift was sent practically anonymously, I know for sure who sent it.  Days like today make me turn my gaze skyward, not in lament but in disbelief that I should be the recipient of so much love and blessing. My heart buzzes, not just for the joy of a new book which I can’t wait to dig into, but for the heart with which it was sent and the heart who sent it. Thank you.

And now I’ll let you go with a book recommendation:  The Lacuna by Barbara Kingsolver. Not only is Teri a wizard who knows how to concoct bracelet spells, she also knows how to pick a damn good book. I love it. I’m not quite done with it because I’m sipping slowly. I don’t want it to end. I allow myself a few pages, a little nip, every day. When I hold it I feel like I’m holding hands with a long-lost friend. It’s woven out of history, Frida Kahlo, Diego Rivera, Trotsky, Mexico, food, cooking, class warfare, art lovers, book lovers, screaming monkeys, guns, intellect, heart, a love letter that made me cry, friendship, longhand communication, an aspiring writer, broken hearts, and love sweet love. I’m a spinning top, giddy in love with this new book.

Ah, feelings.

——————

Today’s poem is for reading.

Dostoevsky by Charles Bukowski

against the wall, the firing squad ready…

I sat down to write a blog post a few days ago updating my sinus situation and as I wrote, all I could think was I’m sitting down to write an update on my sinus situation? It made me poof-haired crazy. Has it come to this? Writing about the clogged tunnelage in my little melon of a head? I decided several things.

1. I’m a deficient CF blogger. I write about CF, the daily huff and puff and the corollary emotions. But I prefer to keep a comfortable distance from the uglier aspects for everyone’s sake. There are several CF bloggers who have more guts and less vanity than I do and who are able to write about the ravages of the disease in a sensitive yet honest way. I praise them and I thank them, because many of those blogs lifted me out of the cystic fibrosis quicksands with information and the comfort of knowing I’m not alone. But I realize I am unable to write a “CF blog”. I get shrill. I get teary. I get grossed out. I hate myself a little bit extra. And anyway, it becomes difficult to write a CF Blog when I refuse under penalty of self-inflicted death to never ever use the word p.h.l.e.g.m. in a sentence, so help me God.

2. My sinuses do not require an entire post. Surgeon Number 1 swaggered into every appointment wearing scrubs and the musky scent of egotistical pride for having developed a less invasive method for sinus surgery (balloon sinuplasty). He began every appointment with genuine amazement to see me standing there (still alive!) and ignored me when my insurance refused to cover the surgery. For once in my life, I actually felt thankful for coverage denial, because it forced me to get a second opinion.

I went to meet Surgeon Number 2 armed with a sinus battle plan courtesy of Noan. Surgeon Number 2′s exam was thorough (did I mention the first surgeon didn’t bother to look in my nose a single time?); he took over an hour and a half, but spent most of the time listening and creating a mutually agreeable plan of action. He agreed I was in need of surgery, but felt the conventional  method of sinus surgery was the only method which would actually benefit my small and inflamed sinus passages (balloon sinuplasty would have lasted a few months at best). The good doctor gave me several weeks of treatment with oral antibiotics, steroids, and nasal spray. All of this occurred a few months ago and the treatments helped a lot. Unfortunately, it seems the improvement was temporary because soon after the therapies ended, I returned to a stuffy nose and burning cinder headaches. I have an appointment next week to reassess.

The story has not ended yet, but I’d say the moral is to trust yourself if you have a bad feeling about a doctor. Find a better one. There’s no reason to seek treatment from a doctor you don’t trust, or worse, dislike. Medical treatment consists of medicine and treatment– human interaction and relationship. The most important lesson I learned though is that if I must have an eight inch  metal scope pushed down my nostrils, it helps so much when the young medical fellow who is learning how to properly scope has coffee colored skin, green eyes, and a delightful English accent. I asked ten times, Is it in? Is it in? Not quite yet, you’re doing great, just lovely. Just lovely indeed. I think of scopes now and I smile.

3. Illness is not a muse. While I was reflecting on the foot-dragging resistance I felt against writing a medical update, I realized CF is not a topic I explore in poetry. Not one single poem is about CF. Lungs make occasional appearances, but the disease? Never. I’m sure it’s there in the spaces, between the lines, or casting a shadow over the words. Maybe CF is the dirt from which the words grow. But I don’t find the disease inspiring or worthy of ink on my page. As Rafael Campo writes in his fascinating article about illness as muse:

The only way we can defy our own mortality is through acts of the imagination, by creating the stories and sculptures and paintings and poems that will outlast us, but that will always be animated by our will to have created them. Even our greatest scientific discoveries can be understood in this way: they are not truly ends in themselves, by which we can ever hope to explicate away our suffering, but are rather part of the same process of dreaming and desiring, wishing and wondering.

Illness is simply a means of transportation. It’s a vehicle which drives me closer  to the precipice of life and death, the greatest show on earth. The swizzle of life and death, mingling and steaming and frothing, constantly and simultaneously unfolding within every living thing (yes! in your body too! this very instant!). I’m not interested in the means of transportation; I’m interested in the view: the thin little string that keeps us here, inhaling, exhaling, multiplying, decaying,  swinging back and forth, swinging swinging like a pendulum, maybe amazed and maybe not by the wild cacophony.

——————

Today’s poem is for knowing nothing.

Looking West from Laguna Beach at Night by Charles Wright

I’ve always liked the view from my mother-in-law’s house at night,

Oil rigs off Long Beach….

REGRET SPOTTY COMMUNICATION -(STOP)- ENERGY LOW, TRYING TO CONSERVE -(STOP)- FEVER GONE, COUGH & BREATHLESSNESS REMAIN-(STOP)- 5 MEDICAL SHIPMENTS RECEIVED LAST WEEK -(STOP)- IMPROVING, HOPEFUL, DO NOT WORRY -(STOP)- GOOD NEWS: FIRST PUBLICATION ACCEPTED -(STOP)-STRANGE COMBINATION, ILL & ECSTATIC -(STOP)-MUST CONTINUE WRITING NOTHING TO DISTRACT SINCE ALL TIME SPENT AT HOME- (STOP)-PHYSICAL ENERGY LACKING, VIGOR TO WRITE BLAZES STRONG -(STOP)- YOURS SINCERELY, LIZI

In case you want to send a telegram.

Some famous telegrams.

——————————————————-

Today’s poem is for the big P.

Publication Date by Franz Wright

One of the few pleasures of writing…

Autumn has arrived and it comes bearing gifts. Not just the gift of chilly pinprick mornings that send us snuggling deeper under the covers for another five minutes of cocooned slumber, nor the gift of front row seats for the annual leafy fashion show. The gift I’m referring to is my annual welcoming committee: the crackle I hear with every inhalation. The gift I’m referring to is the gutter-clogged feeling of airlessness bestowed upon each bronchial tube. Autumn is the season I begin to appreciate my treatments, even more willing than usual to do whatever I can in hopes of preventing my inevitable fall (pun intended). Autumn is the season I begin to figure out the most convenient time for hospitalization.

*

When my brother underwent lung transplant evaluation (did you know not everyone is eligible for transplant?), he was given stacks of paper with information and answers to help him navigate this new world. It was a lot of information to absorb and keep track of. An entire binder was devoted to detailing and explaining the post-transplant medication regimen.

One piece of paper in particular remains in my mind: suggestions for ways to conserve energy while awaiting transplant.

By the time a person is evaluated for bilateral lung transplant, lung function typically hovers below 30%. Medical appointments can be annoying and tiresome for all of us, even in the best of health, but the process can be grueling for the person who is struggling to breathe. (Let me say it frankly: for the person who is dying). Consider what it is to carry the weight of medical appointments, daily physical limitations, ongoing treatments, worries regarding eligibility and making the right decision, watching and waiting for the beeper to buzz, exhaustion, inability to sleep, facing mortality every day, wondering if the surgery will actually happen and be successful, not knowing if your body will accept or reject this tremendous gift, and on and on. Quite a load to carry every day. Energy conservation is necessary and crucial at this point.

Even though I watched my brother pull himself up the stairs and then spend minutes catching his breath at the top, my relatively healthy body prevented me from understanding why someone would appreciate (no–need) suggestions on energy conservation. Even though the process of end-stage disease was unfolding right before me, I couldn’t comprehend the totality of physical deterioration.

After taking a shower, comb and dry your hair while sitting on the edge of your bed or a chair.

I lived with my brother. I witnessed some of his struggles and frustrations, and even still, I was unable to accept that an act as simple as taking a shower would deplete a person’s energy. At the time, I couldn’t recognize how every action ceases being just an action, but becomes the physical embodiment of sheer will and determination. Up the stairs. One step, then another. No matter how long it takes, until you get to the top.

*

Sometimes, after showering, I sit on my bed and give myself a few moments to catch my breath. I love showering; the dance of lather rinsing away, the scent of soap, the weight and pound of hot water. A pleasure, yes. But also an activity requiring energy. How strange it is to live in a body that craves rest after bathing.

*

This winter you’ll catch a cold, hopefully not the flu. You’ll be miserable for a few days, maybe a week. But one morning you’ll wake up and remember what it is to want breakfast. The absence of pain will be as notable for a moment as the aches from just a few days ago. You’ll want to get out of bed. You might even twist the blinds open to let sky back into the dank bedroom. Oh how good it feels to feel good! And within a day or two more, your body will forget the experience of illness, so thrilled to be once again what it has always been. Your body is a magician for the way it heals. It’s also a magician for tricking you into believing in the everlasting strength and health of the moment. There comes a day when the curtain will lift and you will see your body for what it truly is: fragile, miraculous, momentary.

—————————-

Today’s poem is for falling into a pile of leaves and for any other lovely way to fall.

A Note by Wislawa Szymborska

Life is the only way

to get covered in  leaves…

Over the season’s last plums, mounds of asian pears and pebble-skinned avocados, I overheard him speaking to a grocery clerk.

Could you help me find cashews? My wife does this so much better than I do.

He was an older man, tall despite stooped shoulders. He wore a straw garden hat. Khakis with sneakers. A kind smile.

The small grocery store was more crowded than usual and the gentleman looked overwhelmed. He steps were slow and cautious. His timid energy contradicted the cheerful tunes blaring on the speaker system (she wore an itsy bitsy teeny weeny), the customers rushing to maneuver carts around each other, the precariously stacked piles of food.

We crossed paths several times as we each made our way through the store. He asked forgiveness from anyone in his vicinity for getting in their way. He shook a plastic produce bag, struggling to get it open. His veined hands trembled. I wanted to know how this story–Elderly Man Navigates the Grocery Store–would end. Thoughts of him and his wife swirled in with my mental grocery list. Where was his wife? Greek yogurt. Had she died? Whole wheat or french bread? Was she sick at home? Shoot, forgot the carrots for mushroom barley soup. Was she no longer mobile? We’re almost out of string cheese. Did his wife sit by the swimming pool in a yellow polka dot bikini a long time ago?  Jumbo brown eggs versus cage-free white. Does she continue to sunbathe in his mind?

Every person, a story. Every moment, a story.

I wanted to tell him that sometimes it helps to lick a finger and separate the thin leaves of sticky plastic produce bags. I wanted to put my hand on his. I wanted to tell him: you’re doing a great job. You’re beautiful, you in your straw hat at the market, and everything will be okay. But I did not tell him anything.

Let me tell you: you’re doing a great job. You’re beautiful and everything will be okay.

——————-

Today’s poem is for moments (and lives) that pass by us unnoticed.

Splitting an Order by Ted Kooser

I like to watch an old man cutting a sandwich in half…

—————–

And one more. A surprise because aging is always comes as a surprise, louder and more insistent than kazoos at a surprise party.

Jane by George Bilgere

Jane, the old woman across the street…

Sometimes even the most passionate book lover needs a break from reading or writing. I’ve gathered a few interesting ideas for book-related activities. Fun tangents to explore on the literary path. Meaty bits, dreamy bits, nerdy bits.

10. Open a clandestine used book shop. (Thanks to Elizabeth for introducing me to this heartthrob).

9. Read about a day in the life of a well-known author. (Thanks to Noan for this one).

8. Make a dress.

7. Build yourself a writing desk.

6. Become a surgeon.

5. Buy flowers and put them in a vase.

4. Get a tattoo.

3. Donate a few books to a highly selective used book store and lending library.

2. Take a trip.

1. Learn something new.

——————

Allow me one more delightful tidbit: today’s poem.

Anagrammer by Peter Pereira

If you believe in the magic of language…

This afternoon I opened my mailbox, my squeaky-hinged, birdshit-spattered brown mailbox, and found some happy inside.

A book-sized cardboard box from Amazon. I love book-sized boxes.

S, did you order something?

No. Maybe you ordered something by mistake. (Yes. Likely.)

Inside: a beautiful book of poetry whose title poem makes me cry.

I’m almost certain I know who the sneaky little elf is, but I don’t want to make a mistake so I’ll just say it here…

Thank you. Thank you for the book; for the love, hugs, and beauty wrapped up in every word.

And one more thing, this time said with joy and gratitude– why? I don’t deserve this.

I carry with me the kindnesses I’ve been given like poems in my heart. Have you been given a kindness that still buoys you?

——————-

Today’s poem is for friendship, for my secret book fairy, for every kindness that has lifted me like a hot air balloon.

Kindness by Naomi Shihab Nye

Before you know what kindness really is…

The week has been miserable. Got scammed (what the hell?), chopped hair off, got sick. There’s a lot of self-hatred reflection going on right now.

I’m “sick as a dog” and the rejections are coming “in like Flynn”. Kicked while down. But the worst cliche of all is the writer who refuses to let go of the stupid little dream and hangs on to it like a withered tissue.

Where’s the respite? Sadly, not in my books this time. They feel hard and unconsoling. My feverish eyes sting to focus on the small black letters, so I turn, literally, to my pillows. They accept me, though I remain unpublished: my clogged head, tears and unlyrical nose blows.

Tonight I’ll steep my microbes and sorrows in apples and honey. Tomorrow will be better. Maybe I’ll even climb out of my pillow cave.

May your days be sweet. I send you a crisp Fuji apple slice dipped in heavy honey and this, today’s poem:

Disappointment by Tony Hoagland

I was feeling pretty religious…