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…

In defense of graffiti.

I began writing this blog with clarity of purpose.

I wanted to raise awareness for cystic fibrosis, to place those two vile words on every single person’s mouth, as if the rising volume of mass outrage would somehow eradicate the disease.

I wanted to use the time I spend doing treatments to produce something slightly more worthwhile than a few occasionally clever Facebook status updates.

I wanted to leave something tangible behind for my daughter, a stack of papers to hold in her hands, those beautiful hands, cool feather hands, warm shells.  I wanted her to have something to look at and say this is my mother. I wanted to slowly and deliberately pour myself into a container that she could hold when my hand becomes unavailable.

But things are becoming murky.

Lately, I find myself throwing around the word writer. Last week, filling out new patient forms at an appointment with another doctor that’s been added to the roster, I tossed the word out again. Occupation: Mother/Writer. Hmm.

I’m feeling that embarrassing blush of ego and grasp rising in my throat. I find myself imagining someone plucking me out of obscurity, and setting me gently down in a firmly spined book with my name on it. I find myself dreaming of Iowa, and a short piece in The New Yorker.

Besides the magnitude of ego, there’s another reason that these dreams have been sprouting up like pesky weeds. I’ve been feeling better.

Only 6 months ago the word “transplant” was uttered in the same sentence with the words “something we might have to start thinking about”. I was prescribed an even stricter treatment regimen, and a new drug cocktail. I became like a crazed, obsessive conductor, making decisions and establishing the rhythm of my days based solely on a precise adherence to the new regimen and the increasing demands of my disease. My commitment was symphonic, and it seems that for now, I’ve managed to buy myself some time. The whiplash rate of speed with which I had been declining seems to have slowed down. For now. My lung function, which still gets a red, bloated “F” at 50ish%, is at least holding steady. For now.

CF’s caveat is always “for now”. This disease is marked by progressive deterioration (oh, singeing oxymoron), so a few moments of relative stillness feels like a miraculous island emerging in a tread worn sea.

Just six months ago, simply being alive felt sufficient. I was grateful to be alive, and grateful that my daughter had a living mother. But as the fall down the slope has slowed a bit, I’m beginning to look around and remember what it feels like to want to do something that has no relation to health maintenance. I’m starting to feel the startling rasp of inconvenient dreams.

I am living now with the practice of trying to discern my sincere dreams from the lusty force of my ego. It’s difficult. My ego just joined Twitter. But I try to remind myself daily of the great space between a writing life and a recognized life. The two are not necessarily companions- just ask Emily Dickinson.  When I lower the volume on the twittering, the egotistical tantrums, and the interminable strategies, I return to working on the white stack of paper that I’ll leave in my daughter’s piano player hands.

There is no way to defeat CF. For now. And even the long awaited cure, if it ever comes, will not deliver us from death, it will simply allow us a different, hopefully gentler, kind of death. The only way I know of winning is that sheaf of papers, published or not, left behind. We each have a different way of doing it, the graffiti artist spray of I WUZ HERE.

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

For My Daughter In Reply to a Question by David Ignatow

We’re not going to die.

We’ll find a way.

We’ll breathe deeply…

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…

Timeline, Part 5.

*if you’re new here, or have just wandered over, this post will make more sense if you start reading from Timeline Part 1, and work your way back to this most recent post.

17

The first six months of parenthood consist of vacillating between a lack of sleep induced gauziness, and of complete elation. I finally emerge from the foggy first months of parenthood and we begin to establish a routine. I depend on my mother for help almost as much as my baby depends on me- my mother comes over to help with whatever needs doing: groceries, laundry, an extra pair of hands to hold or rock the angel if I’m desperate for a nap. Which I always am. But the days begin to take shape and seem clearer.  And the Angel is such an easy, fun, happy baby. Every day is a new world with the Angel in my arms. I never knew I could love someone this much. My heart feels like it will burst.

18 (the present)

There is nothing more important to me than being the Angel’s mother.  Is being a mom with CF different than just being a mom? I wouldn’t dare say that because of having CF, I love my child more than another mother loves her own. I will say though, that each day I have with my daughter is a blessing that I am acutely, joyfully, and painfully aware of. Sometimes, when I am feeling overwhelmed by CF and by worry, I try to figure out what age would be okay with her if I died. When she was first born, I asked God to let me live until she was 7 because that way, she’d at least have some memory of me. She is eight now. Would she handle my death better at age 10? 18? I negotiate with God. These days I pray to see her graduate from high school. Maybe I’m getting greedy. No age is the right age.

Part of a mother’s work is to try to give her child the skills to leave home and make their own way. If we do our jobs well, our children are ready to take off into the world, able to live their lives well without us. I think moms are usually only aware of this in a general and eventual way, like something that needs to be in place at some point before the kid goes off to college. But it’s something that moms with CF are constantly aware of on a regular basis. We NEED our children to know that if we are not around one day, they WILL be able to go on and have a damn good life even without us. It’s fucking hard: even for a few days, when I go to the hospital for a tune up and the angel and I have to be separated, I have to force myself not to come undone. It kills me that I’m not there to pack her lunch the way she likes, to do her hair in the morning the way she likes it, to see her face coming out of the schoolyard and know instantly whether she’s had a fabulous day or a miserable one. But I try to use the temporary separation as an opportunity to let her know that even when we are apart, our love remains. Love is eternal- you carry it with you, it becomes a part of you, it becomes who you are. Love does not go away, even if people do. CF is strong, but it is no match against love.

As the years go by, my life is filled with the beauty of watching the angel grow and witnessing her life. But each year gets tougher physically, as more and more is required of me to simply get by. I have an interesting daily To Do list: besides all the typical SAHM stuff–wake the angel/get ready for school/ breakfast/off to school/shower/attempt to do some form of exercise/clean/cook/groceries/errands/ laundry/pickup from school/afterschool snacks/homework (because there must be discipline even if I feel like saying life is short, so don’t worry about homework)/shower/dinner/pack lunch/and do it all over the next day…I also have my daily treatments and medications that take about 3 hours a DAY (when I’m feeling relatively well). I do these treatments and medications so that I can function, breathe more easily, and put off lung transplant for as long as possible. My daily negotiations with the god I’m not even sure exists take up some time also. Oh, and every day, several times a day: telling her how beautiful and kind and smart she is–so many times, enough times to leave a surplus for when I’m no longer around.

Without doubt, CF has impacted my parenting and my marriage. S teaches me what it means to BE a spouse, a life partner, to put words of love and loyalty and devotion into action. And the angel teaches me, every day, how to live contentedly and joyfully. I never planned on being a mom because I didn’t know it was possible for me.  That’s the thing with CF: for better or worse, you never know. The doctors said lots of things to my parents, but they really didn’t–and couldn’t– know. I worried in my bedroom as a teen, but I didn’t know either. I never, ever imagined my life would look like this. Some days it is rough and ugly, and I curse and cry and get mad. I’ve had those dark days, and I know there are more in store for me. But then there are the moments of absolute gratitude for the life that has unfolded, and the many moments that brim over with love or beauty or intense satisfaction.  The moments are there for the taking, and they make every struggle, every gasp for air, every disappointment, every hurt, worthwhile.  Small, soft, quiet moments that add up. More beautiful moments than I ever could have imagined.

Boundless love.  CF can’t touch it.