Silent as a…

Mouse? No. Mice are quite loud. They scamper and click their way through this world. They nip at the corner of the cereal box. When you’re alone at home, listening, this sound can feel as noisy as the pound of a sledgehammer.

If you listen well, not listen hard, as the act tends to be called, but listen open, everything makes sound. Even silence, or the absence of sound, can thrum in your ears with energy. My silence these past days has been loud, churning with thought and energy. I’d say I’ve been silent as a turtle. Thinking. Silent as a clock, ticking. Silent as a snake, waiting.

Some of you are aware of what occurred after my last post— a ripple of incidents, one leading to the next like a Rube Goldberg machine. I edited comments and removed the poem link because I was notified by a dear reader to a strongly worded comment on the blog I linked to. The poet commented to express annoyance that his work was posted entirely and without permission. I am now communicating with the poet and actually quite fond of him;  but this series of events got me thinking (and worrying) that all this time I’ve been sharing something which might not be mine to share: the work of others.

I believed that promoting the work of writers I adore and “spreading the gospel” of poetry is a good thing. I believed that if someone falls in love with a poem or if a single book of poetry is sold because of a poem I’ve linked to here, I’ve done a good job. I believed I was respecting the work of poets I admire by linking to poems rather than posting the entire poem. I don’t receive any benefit from sharing poems other than the joy of passing on love. Some poets might even appreciate it. But the smidge of guilt I felt upon reading the poet’s comment regarding reprint permission niggles at me, and I can’t deny the feeling of heartburn and dread.  I’m tangled up wondering what the right, true thing to do is, if such a thing as “right” and “true” exists.

I wonder what Rilke or Rumi would say about this.

The truth is I’m not really sure where to go from here. Should I cease posting links to the work of others? Am I taking something that doesn’t belong to me and giving it away? I love poetry. It sits inside of me, at the core of who I am, and I want to share it. Because poetry is generally not a commercial endeavor nor a commercial success, the rights, work, and meager profits of poets must be carefully protected. But for those very same reasons, successful work should be shared and celebrated. So I’m in a bit of a moral quandary.

My heart has a thumbtack in it right now: no poem today. I may have reached the end of lizislifelines in its current incarnation. Perhaps one day I’ll be able to post a link to a published poem of mine. Until then, or until my heart knows where to go, I’ll sit in silence and wait. Thoughts, ideas, and suggestions are welcome.

All creation holds its breath, listening within me, because, to hear you, I keep silent. -Rainer Maria Rilke

Found.

Another innocent tree has died because of me. You see, I had a ridiculous inane absurd challenging burst of inspiration: compose a poem by utilizing the search terms that lead people to my blog. A found poem. It seemed like a great idea at first but it’s difficult to attempt a finely wrought creation with phrases like “girls gone wild”, “wild and freaky spring break”, and “sex statistics 2011″. It’s interesting to observe how people stumble upon my blog. I’ve written here before about blog stats, traffic, and the way these relate to sex  but it never ceases to amaze me that apparently, the majority of traffic to my blog comes from sex fiends and perverts. Not you, though. Of course not you.

So back to the sacrificial tree. I wrote and crumpled about 50 sheets of paper, but instead of alleyooping the crinkled-chip legal pad sheets straight into the purgatory of the recycling bin, I decided to uncrumple a few of the ideas and share some of my failed attempts with you (actual search terms are in italics)…

The most solid attempt was the poem about the older couple at the movies: they’re waiting to see Midnight in Paris, shoulders touching, her hair is smooth and gray (cat gray, pebble gray), she holds the tub of popcorn with the potholder of her cold palm; all of it– the hair, the wrinkled hands in the tub of buttery popcorn, the touching, his frequent need to get up and pee– all of it, a celebration of surviving. Found poem, strike 1.

Next attempt was the poem about a young couple divorcing: the husband leaves to go fishing for the first time while she tends to their young son who is sick with a sinus infection for five days, the bactrim isn’t helping, her life feels like a zoo frenzy but what do you pack for a day at the zoo she wonders (the first aid kit is useless with injury of the body and of the heart), no answers in reply to questions, the couple is apart, scared, and angry, standing on opposite sides of the fault line. Clearly, this is strike 2.

I had some fun with the poem about  the couple that meets on spring break: she has sex with various men (Chuck, Charles, Stanley) and then one night she meets Frank. There’s a dark moon, a deep sea, and she’s prettier without her glasses. She tries to help him with the condom and he yells calm down, I f’in got this. A wild and freaky spring break indeed. Strike 3 for me, for Frank, and for the girl who is prettier without her glasses (she came home from Spring Break with an STD).

It’s easy to see that found poetry is not my forte. So why am I playing with the found poem this week? Because I’m a little bit lost. A little dried out. A little unsure and a little doubtful. I need to take a couple of weeks to uncrumple myself and smooth my creases. I  have some projects at home to take care of, some doctors appointments, and some decisions to make. I will also be strengthening my poetry muscle in a workshop with a poet, Kim Addonizio, who I have long loved. I received an email from Kim on July 4th weekend letting me know I had been accepted to join her workshop. I have read her work, appreciated it, studied it (especially this book of poems); and there I was, exchanging emails with Kim like no big thing. The holiday’s zoom snap crack of fireworks matched my buzzing heart.

I’ll be back here in a few weeks, as soon as my “wild and freaky” summer break ends. In the meantime I hope you find delight in the most unexpected places and treasures in your trash heaps; I hope you stumble your way to unplanned adventures and fill your pockets with stories to tell.

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Today’s Poem is for the many nights we’ve lain here like this.

The Numbers by Kim Addonizio

How many nights have I lain here like this,  feverish with plans,

with fears, with the last sentence someone spoke, still trying to finish…

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…

Good f’in morning.

To be brave is to be tired much of the time, half stunned by continual dusk. - Joseph Millar

There are some days you wake up and before your sleepy feet have even touched the cold morning floor, you’re already tired.

For the past month, I’ve been struggling with my blood sugar levels. It seems that no matter how diligently I test my blood sugar or how many shots of insulin I give myself (a few days ago I reached an all-time high of eight shots in one day), I can’t control the peaks and valleys.

It’s not just the emotional exhaustion and frustration of seeing those snaggle-toothed numbers on the monitor; there are tremendously debilitating physical effects too. When my sugar is high my body temperature drops suddenly, I get a severe headache, and all I want to do is sleep and vomit. When my blood sugar is low, I am sleepy, drenched in sweat, and unable to comprehend what is going on around me.

I was diagnosed with CFRD (Cystic Fibrosis Related Diabetes) when I was about nine years old. It was a fluke. I gave a required sample of urine for a sleepaway camp physical and the specimen showed that I had sugar spilling into my urine. I still remember exactly where my mother was sitting and the way her face crumpled when the pediatrician called her that evening to deliver the news. Oh, sweet pee.

From what I’ve heard, CFRD is not supposed to happen at such a young age. It usually happens later on when CF has progressed and deteriorated the body. I’m learning over and over again that the very things that aren’t supposed to happen, happen. People in Joplin Missouri are not supposed to get the roofs blown off their houses. People are not supposed to get decapitated by a tornado. Want to make a list with me of things that aren’t supposed to happen? It would never end.

But the truth is that I’m probably not supposed to be here now and somehow I am. My pincushion body and I are still here, giving CF the finger with a smile. Staying alive and giving CF the finger every single day is the reason why I’m one of the lucky ones. About 150 injections a month and I’m one of the lucky ones. My treatments are endless. Literally. They will never end, as long as I’m alive. Not only will they not end, but they’ll continue to demand more of me and make my life increasingly smaller as time passes. Yet I know with every cell in my body, defective or not, that I’m one of the lucky ones.

I’d be lying, though, if I said that I never get tired. Some days it takes all my strength or the brute force of gritting my teeth and putting one foot in front of another to  make it through the day.

I’m tired of this:

And this:

And this:

I spend a frightening portion of my life trying to replicate nature and make my body mimic what it should be doing naturally. It’s mentally and physically exhausting, and although I know that it’s impossible to replicate nature, I’ll die trying.

My newest source of panic attacks, especially when I can’t seem to control my blood sugar levels, is the thought that my limbs will be amputated. I try to remind myself that it’s only an irrational fear and I stuff down the anxiety that is always threatening to rise and bubble over like a frothy pot of angry steamed milk. Perhaps though, it’s not such an irrational fear.

The effects of diabetes are cumulative and I’ve lived with CFRD over 20 years now. I can already see some of the effects on my skin; I rotate injection sites, but after almost 25 years of this my skin is bruised, tired, and starting to groan loudly every time I approach with a new needle. So I’ve begun to inject the flesh of my inner thighs and ass. Nothing is sacred.

Some years I’ve managed to maintain my blood sugars as tightly as a military bed. There are too many snatches of time, though, that the levels run like wild horses despite my best efforts. I can’t help but wonder what kind of wretched future (blind? limbless?) is being concocted for me by my hurtling, hurting cells in the hazy chemistry lab of my body. What will be the first to go? A toe? A foot? A leg? My heart’s ability to love life no matter what? Maybe this is all a game to see how far we can get dragged, ground to a pulp, cut to a nub, left with nothing but the echo of a cry that life is beautiful. Is life beautiful? Will I love life no matter what?

I won’t love you, life. I will not.

What was not supposed to happen to you?

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

Flying Inside Your Own Body by Margaret Atwood

Your lungs fill and spread themselves,

wings of pink blood, and your bones…

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…

Woof, she says.

Early this morning, S and I dropped the Big Fat Dog off at the vet for a procedure, which although routine, requires full anesthesia. BFD will be spending two days and two nights at the “resort”, with 3 walks a day, 2 generous meals of premium kibbles, and the luxury of a bath and a manicure (pedicure?). To top it all off, she’s also scheduled for anal gland expression. Isn’t that what all females want when they go to a spa?

I complain about her, I pretend to dislike her, but for better or worse, neuroses and all, she is my four legged baby. It was hard to leave her. She was planted next to me, sitting on her hind legs, and when the vet came into the waiting room to retrieve her, she tried to camouflage herself into the wall. Her usually certain, thick legs trembled. Her eyes begged.

I know the feeling, pooch.

It’s the way I feel every single time I go to a doctor. What torture awaits once they take me back with them? I wanted to tell the BFD the same thing I tell myself when I’m in purgatory and my name gets called: Run! Run while you still can! But the crazy dog, she made me proud. At my next appointment, when I have to make that long walk to the torture chamber, I’ll think of her sweet trembling legs, and the way she picked herself up and walked on her own without having to be dragged in by a taut leash, nails carving the floor. She walked with dignity, and I think I even saw a quick broom swish of the tail.

She’s scared of dishwashers and people in hats, she’s as overheated and lazy as a sauna, but she can still teach her demanding mother a lesson or two.

The farts and nuclear breath, though, I can do without.

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Poetry for pets is typically nauseating, but once in long while, it’s as perfect as the grass salad the BFD collects for herself after dinner every night.

Walking the Dog by Howard Nemerov

Two universes mosey down the street

Connected by love and a leash and nothing else…

Bed days.

Sharp black shoes that fall on you and kill you.

Yesterday belonged to my bed.

It started badly at 6:20 am when I spilled my daughter’s hot chocolate all over the inside and the outside of the microwave. Simply a minor irritation, but it should have given me some inkling that it’d probably be best to return to bed immediately and let the day pass without me in it.

But no; stubborn to a fault, I kept on, and the day kept on too, telling me in all different sorts of ways I told you so.

As some of you know, the thing I feared most happened. Well, one of the things I fear most. I fear many things, so I should categorize my fears. The fear I fear most related to blogging happened: instead of clicking “save draft”, I clicked “publish”.

Cue wail of horror: NOOOOOOOOOOOOOO.

When there’s something I need to write about but will probably get forgotten or fall into the black hole of my distracted brain, I jot down a few notes so I can return to it later when I’m not cooking dinner, helping the angel with homework, and trying to calm down the neurotic dog whimpering in the corner because a chair tipped over on her when she was trying to get my attention. The lesson, apparently, is that in the age of technology and immediacy, one should not write in chaos, and one should not jot notes for a future post in chaos either; the chaos will become more chaotic.

Subscribers, FB friends, and google readers all got a sneak peek into the strange way I write a post. A found poem, perhaps? Yes, lets call it a found poem.

In the meantime, throughout this day, I had been feeling a heaviness, a rising fullness in my nose, behind my eyes, and in my head. A brewing sinus infection. My body felt it before I could name it. And of course, today I woke up officially sick. Why? Because just a few days ago I had been thinking about how well I had been feeling for a few days in a row. I even wrote about it for a future post. The thing is, when you have CF, rule number one is don’t feel good too loudly.

The other shoe: many of us live waiting for it to fall. It will fall, it will come falling down on your head and land you in the hospital. With a lung infection. Even though you got hit in the head with the falling shoe, it will be something completely unrelated to your head- lungs? sinuses? liver?- that will fail you. That’s the way it works. I’ve seen it happen, and had it happen, countless times. I was gloating about my sinuses on a CF forum (I know, I know, who gloats about their sinuses), and not a week later, the doctor tells me I need sinus surgery. No joke. A guy on a CF forum was in the hospital and posted that he was feeling better and hoping to leave the hospital in a matter of days. Next thing I know, he had taken a bad turn and died. Died. Fucking shoe.

When you have CF and you feel good, it’s a quiet extra bounce in your step, a secret smile on your face, the ability to walk a flight of stairs without getting winded. And even though every ounce inside of you is whooping with joy, you don’t celebrate too loudly. (The Unknown Cystic explores the jinx phenomenon in this post).

I woke up this morning with a full fledged cold. I’m hoping it’s just a thing that doesn’t become a Thing. My ego is still curled up and hiding in humiliation somewhere behind my spleen, and I’m curled up and hiding in my bed with a cup of tea and a sinus headache. None of yesterday’s events qualify as “bad day”- I know bad, really bad, days. I also know that I don’t know the full extent of how bad it can get: it can always get worse. This was simply a bed day. And I should have seen it coming, because just when you feel like you’ve got a pretty good thing going, life shows you just how in control you are. Not. At. All. Please watch for falling shoes.

*Thanks to LBD for providing her sexy foot.

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Today’s Poem: (click on link to read poem in its entirety)

In Praise of My Bed by Meredith Holmes

At last I can be with you!

The grinding hours

since I left your side!…

Who’s afraid of the big bad wolf?

What Keeps You Up at Night?

Let everything happen to you, the beauty and the terror. -Rainer Maria Rilke

Spiders, flying, heights, snakes, enclosed spaces … Which one of the many possibilities makes your skin crawl?  These types of fears, for the most part, seem to choose us randomly and are more of a quirky character trait than a debilitating force. The fears are there, but they are easy to name, and either managed or avoided.

Then there are the things we worry about, toss and turn about. Different for every one of us, but every one of us has those monkey mind nights. As if our worrying guarantees that the diagnosis will comeback negative, the parents will be okay, the kids will be okay, the mortgage will be okay, everything on the to do list has been done, everyone is getting along, the job is a sure thing, and that rapid heartbeat means nothing. Toss and turn, toss and turn.

Then come the biggies, the more nebulous, existential fears:

meaninglessness

loss and feeling lost

the loud silence to our questions of WHY

and of course, the castle that all roads of fear lead to: death.

I can admit that I’m afraid of death. I’m afraid of losing the ones I love and can’t live without. I’m afraid of a painful death. I’m afraid of an ugly death (as in, if I am in the hospital dying, will I also have to suffer the humiliation of bad hair, morning breath, and unkempt eyebrows?). I’m afraid of being stuffed under a pile of dirt. I’m afraid of suffocating. I’ve felt some wisps of air hunger already, at my current lung function, a grabbing for air just out of my reach, and it’s horrifying. I am so afraid of leaving my angel, but I’ve already gone over that fear with you.

(And, a secret: I’m afraid of any of these things happening to you).

I’ve thought about death for as long as I can remember being conscious. I wrote an excruciatingly embarrassing poem in high school about saying goodbye to my loved ones. I was proud of it because it was published in the high school literary magazine. It was published in the magazine because I was co-editor. You see where this is going? Probably not the best piece of writing.  I hadn’t yet learned the lesson that you don’t publish your own work when you’re the editor, especially not if it’s an overwrought, poorly written, sentimental piece of work. Still makes me blush with shame to this day.  But I needed then to shout from the rooftops: DON’T YOU GET IT GUYS? WE ARE ALL DYING! THIS IS NOT GOING TO LAST FOREVER! And, I suppose, that need has never left me, which is one of my main reasons for writing this blog.  Not so much to shake and wake other people up, but to live so fully so that when the time comes, I will be able to let go a little more easily. I will be a little less outraged that my turn is up because I will have wrung myself dry and put myself to some use and used up every little ounce of anything that existed within me. I will be able to say, I was me, all of me, and I did the best I could with this life, all of it, not just the pretty parts.

Speaking of fear, yesterday was a fear-full day for me. I had told a few people about this blog, mostly family, close friends, and members of the CF community. My friend C asked me if she could forward a link to a few of her close friends and family. Sure, why not. A few people sent the link around. I was okay with it. My heart did a few flip-flops, I felt a little wobbly inside, but I was fine. I suppose I was selectively out of the closet. But then I did the thing I feared most: put the link to this blog on Facebook. That meant that ex-boyfriends, parents of angel’s friends, friends of S, casual acquaintances, anyone who I have even the most mild connection with now had a link to my soul. Now this is not to say that I have gobs of friends on FB- quite the contrary. My list of FB friends seems to go in the opposite direction. But, still, there are enough people there that I couldn’t help but wonder, do I really want this person to read this and link to it and share it (yes, actually, yes i do!). I might have peed my pants a little. But I survived. And the feeling of throwing the doors open and saying, here it is, was actually kind of exhilarating. The response, for the most part, has been overwhelmingly positive and supportive.

There exists a small handful of people who genuinely care about me and for some odd and unfathomable reasons, actually want to read the strange meanderings of my dark brain. But the thing is: most people who saw the link and dropped by the blog out of sheer curiosity and voyeurism, really don’t care. CF? Death? Poetry? Who cares about it when the kid has 102, there is a deadline at work, or the car has to be taken in for the third time. The thing you think is the most awful, shameful, horrible thing that must never see the light of day hardly even registers on someone else’s radar.

So I laugh! I’m sitting here, laughing with giddy freedom. The thing I’ve been running from my whole life, the thing I spent hours and energy trying to hide and run away from, is now completely out in the open for anyone to come take a look at. I finally stopped running, I turned around, and I looked it right in the face. The vicious wolf, foaming at the mouth, clawing at me, has become a mewling, pitiful mutt. Yes, of course, it will still kill me. It will still come back to bite me, raging at me with rabid fangs, taking pieces of me and my life with the next lung infection, hospitalization, unwanted phone call from the doctor with bad results, or the next time I wonder “Is this it?”.

But right now? Right now, I’m putting a leash on it, and taking it for a goddamn walk.

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

It is Raining on the House of Anne Frank by Linda Pastan

It is raining on the house

of Anne Frank

and on the tourists

herded together under the shadow…

Out of the closet.

With apologies to my gay friends, I’m borrowing this phrase.

No, I am not a lesbian. But I’ve never been public about a certain reality of my life: I have cystic fibrosis.

Of course, I’ve told people over the years: close friends, boyfriends,  and other acquaintances when necessary. But it has always been something I’ve been very quiet about, even with my truest of friends.

It’s almost like I led two separate lives: my real life, which I lived in an exceedingly “normal” way, even if I had to claw my way to normal. I did everything a “normal” kid, teen, young adult, and adult does. I hid my fears, my medicines, and did my best to hide the things I felt made me different from everyone else. I couldn’t hide the cough, though. In a crowded place, my cough was like a beeping locator device (“Oh, there’s Lizi! Lizi and her cough!”).

My other life was the life at clinic. I was able there to talk openly about my health, about the aspects of life that I never discussed elsewhere, and be open about CF. Well, that was the reason I was there after all. But only to an extent. Even there, I wanted to make sure that there was something separating me from all the other CF patients. Yes, i was there at clinic, but I was healthy. I had a mild case of CF. I really really really didn’t need to be there. I really really really didn’t want to be sick. But I humored them, and I went. And I was rarely SICK, but I still couldn’t escape CF.

As I’ve gotten older, and sicker less healthy, I’ve noticed that these two separate worlds of mine are getting more difficult to keep apart. And I’m wanting to live my life as ALL of me, whatever that may mean. I have the need to live openly as everything I am, and this includes acknowledging my disease. No, this doesn’t mean talking about incessantly, or making it the focus of my life, but I feel it has become necessary to stop compartmentalizing myself into healthy Lizi and CF Lizi. Although it’s painfully scary to bring to light the aspects of yourself that you’ve tried to hide and push down, the part of yourself that contains the deepest seeds of shame, it is what must be done in order to be fully and completely alive.

So this is what I’m doing to come out: I’m writing about living life with CF in a public forum (hi y’all, I have CF). I’m struggling with the public confirmation of this fact, and the feelings that bubble up from this long awaited openness. I’m trying to let go of feeling ashamed or less than. I’m becoming active within the CF community. I’m trying to spread awareness of CF and raise money for CF research by speaking at fundraising events, and to anyone who wants to listen, about what it means to live (and live well) with CF. Step by step, day by day, I’m taking steps to integrate all the parts of myself, including the ugly parts, so that I can live as a whole human in this beautiful, difficult, messy, blooming thing we call life. This is how I’m saving myself.

And now a poem. If someone forced me at gunpoint to choose a favorite poet (I’d end up taking a bullet, because how does one choose just one?), Mary Oliver would be one of the first to come to mind. I’d go as far to say that I would even sell a limb to spend an afternoon with this marvelous treasure chest of a lady. In keeping with the coming out of the closet theme,  she is also a member of the gay community. I read this particular poem when I feel my strength or conviction for what I must do begin to wane. I hope this poem feeds you with the strength you need to find your way on the journey, to save yourself.

The Journey by Mary Oliver

One day you finally knew

what you had to do, and began