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…

Awkward conversations.

Awkward is such a perfect word. It looks awkward; it feels awkward. Whenever i write it, I’m certain I’ve misspelled it. I peer at it and wonder, did I spell you wrong again? The answer is always no, it is simply on the page in all its awkward glory.

Now for an awkward segue into our main topic….

A few days ago, I spent a couple hours of my morning listening to a lovely presentation about ovaries, uteruses (uteri?), fallopian tubes, hormones, vaginas, urethras, and penises (penii?). This is the annual euphemistically titled Mother/Daughter Chat held at my daughter’s school for fourth and fifth graders. The Chat is a presentation to prepare girls (and boys in another room with their fathers) for the onslaught of changes that occur during puberty. At the very least it opens the door to discussion and lets the kids know that these things can be discussed without anyone keeling over from mortification.

While no one will keel over from intense mortification, everyone might wobble and stammer a bit. The first hour of the meeting was awkward. There was evident discomfort and embarrassed giggles from both the girls and the mothers. After a while though, the presenter managed to make everyone feel at ease and questions from the girls began flying like paper airplanes. Tampons! Mood swings!

Unplanned pregnancy:

Presenter- What made you ask that question, Janey? Was it something you saw on tv?

Janey- No, it happened to my mommy.

No question was off-limits. Well, with one exception: the presenter told the mothers in advance that any question regarding sex would defer back to the parents because talk about sex was not allowed and the word sex was to be avoided. Hmmm. That makes things a bit more difficult to explain and understand. The presenter explained that in order for a pregnancy to occur, one egg and one sperm must unite. But how do they unite, asked one girl who was understandably mystified by this missing piece of the mysterious puzzle. Great question, and that’s something you should definitely ask your mom tonight at home. Although I know that not all the mothers there agree with me, I think this piece of information should have been answered in a simple, age-appropriate, straight-forward way instead of shrouding the word (and the act) in a burqa-like sense of mystery. If we’re able to discuss the human body in an open and comfortable manner, shouldn’t we be able to discuss the way human bodies are created in this same way?

Death is another topic that most of us do not like to discuss or think about. Whenever I’m sick enough to go in-patient, a nurse or staff member will invariably ask if I have a living will. Every time I’m asked this (and it happens numerous times with each hospital stay) I feel slapped in the face. How dare you, I think.  Deep down I realize that they’re correct to ask, but first I must wade through the feelings that there is no way it will happen and there’s no need to discuss it right now. It’s almost as if talking about it will make it happen. And that’s exactly the reasoning behind the ban on the dreaded s-e-x word during the chat: talk about it and it will happen. Perhaps, though, we’d be wise to challenge ourselves and our comfort levels because sex and death are a natural part of life, inextricably linked. We’re not ready for our babies to go through puberty, we’re certainly not ready for them to be sexually active, and of course, we’re not ready to die. But change is the way life flows.

Since I already dragged you with blushing cheeks through the pimpled landscape of puberty, let’s extend this discomfort for a moment longer and talk about dying. I’d like to ask you to ponder your death for just a moment. In order to consider our dying, we must first become aware of how very alive we are in this moment and the constant work our organs do to keep us that way; pumping blood, circulating oxygen, filtering waste, absorbing nutrients. Even the organs that aren’t functioning particularly well (of which I have several) are still working hard. Our organs serve us well while we’re living and moving through this world but the earth doesn’t need them as fertilizer; so maybe, just maybe, we don’t want to take them with us. Please consider becoming an organ donor.

Have the discussion about organ donation with yourself and with your family, because if you do decide to donate your organs, your family needs to know your wishes. Please take a look here for further info, common misconceptions, and FAQs (but you must register with the state you currently reside in). Hopefully, you’ll be on this earth for many years making sweet love til the cows come home. But one day your body will (I guarantee it) decide that it is finished. This becomes the time to share the love, your deep love for life, by letting someone else have one more chance. Our bodies are miraculous and complicated: use it while you got it, then pass it on.

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Today’s Poem:

Living in the Body by Joyce Sutphen

Body is something you need in order to stay

on this planet and you only get one…