Ain’t it funny how the night moves?

S is away on business tonight and I had some trouble with self-restraint today which means that I drank way more coffee than I normally do. I’m wide awake and buzzing with spinning tops in my mind. When S travels for work, my daughter and I have a slumber party. She brings all her pillows and we set her up plumped and cozy on S’s side of the bed. We read in bed together before lights out and then I leave her to fall asleep while I do my treatments. A few hours later, I crawl into bed as silently as possible, but she always senses me and her eyes laze open for a few moments. We hold hands and wish each other a good night (again), and then the angel sinks quickly back into her cinnamon dreams.

The angel has an important day tomorrow, so tonight we’ve decided to forego the slumber party in favor of a good night’s rest. She’s getting big and her life is increasingly calling her away from us. A few minutes after tucking her in for the night, I was sitting on my bed practicing letting go; I was feeling a bit sad, lonely, and maybe a little spooked because last night I stayed up until 2 a.m. reading this. The house was whispering, or maybe it was too damn quiet, and I started thinking about what I would do if all of a sudden I saw a tarantula. Not a second after the thought formed in my mind, I saw a black spider saunter out of some hiding place in the wall.

It was a bully spider and I think it laughed at me. It wasn’t a tarantula, but it was definitely on the thick side of things. No bigger than a fingernail, but with enough black heft to require a few loud pounds of a sneaker’s heel. And then a few more for good measure. As I flogged the interloper to dead-without-doubt, I started thinking about the New Age daisy heads and their happy-faced belief that our thoughts create our reality. For a mad split second I wondered if they’re right: I had a thought about spiders and then poof!, a spider materialized. What if I thought about something worse?

Do not think about psychopaths or cockroaches is the refrain my mind chose to prevent myself from stumbling onto a tremorous thought that would “manifest” who knows what horror into my bedroom (Manifest as a verb? Please, kill me now). No psychopaths and no cockroaches because yes, these two are about equal. No psychopaths, no cockroaches, and no more poofing tonight. Unless I can poof a cure for CF and a better day for this friend and this friend.

It’s going to be a long night. The golf club will be keeping me company, just in case.

Besides cursing the six cups of coffee you drank during the day and the time in 8th grade you watched The Shining, how do you deal with insomnia?

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Today’s poem is for the way our hearts miss a love and the way a night can sometimes miss the daytime.

(click link to read entire poem)

Solitude by Kerry Hardie

It was January,

I’d hardly seen anyone for days, you understand…

Mind trippin.

Art, at the very least, has the function of taking one’s mind places it hasn’t been before…- Marylin Hacker

Just hours after publishing my last post, a little ode to the sun-scorched life, I boarded a plane bound for one of the wettest cities in the US: Seattle. This trip was planned just a few weeks before since I never know if I’ll be well enough to travel. I rarely make plans more than a few weeks ahead of time and even when I do, my mind prevents me from believing that a planned event will take place until it actually does. It’s a strange way to live, often infuriating and frustrating, yet it’s intensely satisfying too; the only day I can depend on is today.

So we had our annual three day family vacation. Three days because that’s what seems to be the longest stretch that I’m able to be away from home and away from my strict medical regimen. The important thing is that the trip happened. I won’t tell you about the man sitting directly behind me on the plane who almost brought me to tears with the constant and generous offerings of his rumbly lung. I won’t tell you about my idiotic decision to leave more than half of my medical equipment at home because I didn’t feel like dealing with it. I wanted to lighten the load, literally and figuratively. I won’t tell you that I woke up yesterday morning already feeling the effects of my short-sighted decision and feeling a cold spreading like a web throughout my body. I’m trying to avoid swallowing and the mousetrap of pain at the bottom of my throat that snaps every time I do.

I will tell you that any and all of these consequences are worth it because even though the flight was quite short, my mind,  she went a travelin. I feel nourished. Sick? Yes. But nourished.

We had fun. There was a lot of silliness. And quite a bit of coffee too.

Even though we tend towards the anti-social, floating through life in our little self-contained bubble, we did spend some time with friends who live in Seattle who we haven’t seen in years. We spent a sunny (!) afternoon with P and his beautiful family. P is a friend of S, and they knew each other through puberty, prom,  and cutthroat high school debate competitions. We also ate brunch with my friend A and I held her brand new baby for close to an hour. It’s mind-blowing to hold the baby that belongs to the same girl I used to hang with from the monkey bars. This alone made the trip worthwhile. The weight of the baby in my arms, the peachy roundness of his head in my palm, his little clutching hands. I melt.

Another highlight was the Seattle Art Museum, especially their currently featured exhibit, Nick Cave’s Meet Me at the Center of the Earth. Photos at this exhibit were prohibited which means I unfortunately can’t share the feast with you. Please click the link and take your mind on a trip even if (especially if) you are stuck at home or stuck in your work or stuck in your heart. No rules, no boundaries; simply uninhibited acts of creation. What would that look like in your life?

We eventually made our way through Seattle’s famous Experience Music Project. I had a difficult time leaving the Jimi Hendrix exhibit. It was a capsule of his evolution as an artist; the music, videos of his performances, and drafts of lyrics written on pieces of hotel stationery. I still have not decided whether the buzz I felt was from the electric guitars playing in the background or simply the thrum of being in the presence of sheer genius. I saw a photo of Jimi on stage, and even his perspiration seems to be charged with a current of creativity. I wanted to catch a bead of sweat and let it sizzle on my tongue. Electrify me, teach me how to give everything I’ve got.

Babies and mind boggling art: both are acts of creation, love, labor, and mystery. Both are also good arguments for doubting my doubt in God. And the best argument for art? It lets our minds travel even if our bodies cannot. Now if only my newfound God would do something about this damn cold.

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Today’s Poem: (click link to read entire poem)

Black Umbrellas by Rick Agran

On a rainy day in Seattle stumble into any coffee shop

and look wounded by the rain…

Scenes from a hospital.

If you read this blog regularly, you may be under the false impression that I’m the kind of person that wakes up with a smile and a bounce. No. I’m all for gratitude, just not first thing in the morning. Wednesday morning, though, I woke up intent on my mission to document the clinic experience.

It was a long, exhausting day of travel, lines, waiting rooms, and the middle seat on the plane. But every inch of it was worthwhile, because for the first time in two years, it was a happy appointment. In any class, my score on the pulmonary function test continues to receive a failing grade. Rationally, I know there’s no reason to celebrate, but everything is relative. So, I’m celebrating that failing grade because it inched up instead of down. I feel like an inchworm who made it across the Sahara. There comes a time that no matter what you do, the number will not rise. I went through it with my brother, and I thought I had reached that point now too, but it looks like there’s still some inching left in me.

A few snapshots of the day: (hover over picture to read caption)

I wanted to capture a journalistic view of a day spent at clinic. Unfortunately, my attempt failed because I wasn’t able to bring you the most important aspect of clinic: the large team of people that are necessary for my care. It can be both frustrating and awe-inspiring to interact with all the people that a clinic visit requires. I saw no less than 12 different health care workers, including respiratory therapists, a dietitian, social worker, the nursing assistant who took my blood pressure and told me that she didn’t want to weigh me because “it’s too  much work. Just tell me what you weigh”, and on the other side of the spectrum, the nurse coordinator who looked like she was going to join me in crying with joy. My endocrinologist was a no-show. The grace period for professors is twenty minutes; what’s the grace period for doctors? As long as it takes? After an hour and a half of waiting, I left.

I truly admire and love a handful of them, like E, the nurse practitioner who talks yoga with me, speaks and listens quietly, and makes me feel like in a parallel universe, we’d be friends going out to have lunch; C, who performs the PFT, and makes me laugh hard enough to almost forget why I’m there; Dr. M who is handsome and hell-bent on not letting CF take our lives while we’re still alive, and who makes me want to say “Screw CF, let’s go grab a drink”. Or Dr. S, who once sat in a hospital room with me for 45 minutes, really sat, without once looking at his watch, to let me cry, to talk about my options, and to tell me that I must never lose my hope. I’ll never forget those moments with him, knee to knee. I couldn’t comprehend his words at the time, but now I see it. No matter where you are, no matter what is going on, even on your way out, there always exists something of beauty. Hope dies only when we close our eyes to it.

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Today’s Poem (click link to read entire poem)

Her Long Illness by Donald Hall

Daybreak until nightfall,

he sat by his wife at the hospital…

A day at the zoo.

Well, not a real zoo, not the kind with funny monkeys, ice cream, and tigers ready to pounce at every turn.

I’m spending the day at clinic for three consecutive appointments, various doctors and nurses, tests, prescription lists, insurance, blood, spit, stethoscopes, and valiant attempts at communication from both sides of the cage. It often feels like a zoo, and while I’d rather be the graceful gazelle, I’m usually the angry gorilla, pounding thick fists against the wall. I do this every three months, more if I’m not well, leaving my daughter behind each time with the fear that they’re going to keep me, as they sometimes do. The bars on the cage grow stronger.

For the first time in, well, ever, I’m tentatively at ease because despite daily brain freeze sinus pressure, I’m feeling better; we’ll see if the numbers agree. Also, I’ve decided to set aside the emotional upheaval brought on by clinic visits in favor of an objective, journalistic approach to clinic. Why the sudden need for neutrality? Because I’m bringing you to clinic with me, and we can’t have the gorilla freaking out (it happens a lot: wild, guttural noises, elephant stomping, papers flying everywhere, tears and shrieks).

So: there will be calm. therewillbecalmtherewillbecalmtherewillbecalm. The plane leaves at 9 am.

Yes, that’s right, we’re flying to the doctor. Most normal doctors (the doctors that z pack you and send you on your merry way til next year) run screaming when they have to treat a CF patient. They don’t know how, and don’t want to learn. I don’t blame them. Then, there are the doctors who are willing to try, but begin every appointment by regaling you with stories of all the CF patients they’ve known and lost, coupled with genuine amazement that you are somehow still living. These are the ones that tighten my jaw. So the mileage, the energy, and the various modes of transportation to get to my doctors, specialists who for unknown reasons have chosen to use their lives helping my CF mates and me live longer, stronger, and better, is worth it.

I’m leaving now, and I’ll post my objective (not emotional.. not emotional!) documentation in the next day or two.

Welcome to the zoo. Welcome to the jungle.

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Today’s Poem: (click link to read entire poem)

Hope by Lisel Mueller

It hovers in dark corners

before the lights are turned on…