Some thoughts on falling.

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.

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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.

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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.

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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.

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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…

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…