Prune juice.

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.

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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…

Let’s talk about our feelings.

{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.

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Today’s poem is for reading.

Dostoevsky by Charles Bukowski

against the wall, the firing squad ready…

Tunnels and vehicles.

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.

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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….