Tunnels and vehicles.

I sat down to write a blog post a few days ago updating my sinus situation and as I wrote, all I could think was I’m sitting down to write an update on my sinus situation? It made me poof-haired crazy. Has it come to this? Writing about the clogged tunnelage in my little melon of a head? I decided several things.

1. I’m a deficient CF blogger. I write about CF, the daily huff and puff and the corollary emotions. But I prefer to keep a comfortable distance from the uglier aspects for everyone’s sake. There are several CF bloggers who have more guts and less vanity than I do and who are able to write about the ravages of the disease in a sensitive yet honest way. I praise them and I thank them, because many of those blogs lifted me out of the cystic fibrosis quicksands with information and the comfort of knowing I’m not alone. But I realize I am unable to write a “CF blog”. I get shrill. I get teary. I get grossed out. I hate myself a little bit extra. And anyway, it becomes difficult to write a CF Blog when I refuse under penalty of self-inflicted death to never ever use the word p.h.l.e.g.m. in a sentence, so help me God.

2. My sinuses do not require an entire post. Surgeon Number 1 swaggered into every appointment wearing scrubs and the musky scent of egotistical pride for having developed a less invasive method for sinus surgery (balloon sinuplasty). He began every appointment with genuine amazement to see me standing there (still alive!) and ignored me when my insurance refused to cover the surgery. For once in my life, I actually felt thankful for coverage denial, because it forced me to get a second opinion.

I went to meet Surgeon Number 2 armed with a sinus battle plan courtesy of Noan. Surgeon Number 2′s exam was thorough (did I mention the first surgeon didn’t bother to look in my nose a single time?); he took over an hour and a half, but spent most of the time listening and creating a mutually agreeable plan of action. He agreed I was in need of surgery, but felt the conventional  method of sinus surgery was the only method which would actually benefit my small and inflamed sinus passages (balloon sinuplasty would have lasted a few months at best). The good doctor gave me several weeks of treatment with oral antibiotics, steroids, and nasal spray. All of this occurred a few months ago and the treatments helped a lot. Unfortunately, it seems the improvement was temporary because soon after the therapies ended, I returned to a stuffy nose and burning cinder headaches. I have an appointment next week to reassess.

The story has not ended yet, but I’d say the moral is to trust yourself if you have a bad feeling about a doctor. Find a better one. There’s no reason to seek treatment from a doctor you don’t trust, or worse, dislike. Medical treatment consists of medicine and treatment– human interaction and relationship. The most important lesson I learned though is that if I must have an eight inch  metal scope pushed down my nostrils, it helps so much when the young medical fellow who is learning how to properly scope has coffee colored skin, green eyes, and a delightful English accent. I asked ten times, Is it in? Is it in? Not quite yet, you’re doing great, just lovely. Just lovely indeed. I think of scopes now and I smile.

3. Illness is not a muse. While I was reflecting on the foot-dragging resistance I felt against writing a medical update, I realized CF is not a topic I explore in poetry. Not one single poem is about CF. Lungs make occasional appearances, but the disease? Never. I’m sure it’s there in the spaces, between the lines, or casting a shadow over the words. Maybe CF is the dirt from which the words grow. But I don’t find the disease inspiring or worthy of ink on my page. As Rafael Campo writes in his fascinating article about illness as muse:

The only way we can defy our own mortality is through acts of the imagination, by creating the stories and sculptures and paintings and poems that will outlast us, but that will always be animated by our will to have created them. Even our greatest scientific discoveries can be understood in this way: they are not truly ends in themselves, by which we can ever hope to explicate away our suffering, but are rather part of the same process of dreaming and desiring, wishing and wondering.

Illness is simply a means of transportation. It’s a vehicle which drives me closer  to the precipice of life and death, the greatest show on earth. The swizzle of life and death, mingling and steaming and frothing, constantly and simultaneously unfolding within every living thing (yes! in your body too! this very instant!). I’m not interested in the means of transportation; I’m interested in the view: the thin little string that keeps us here, inhaling, exhaling, multiplying, decaying,  swinging back and forth, swinging swinging like a pendulum, maybe amazed and maybe not by the wild cacophony.

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Today’s poem is for knowing nothing.

Looking West from Laguna Beach at Night by Charles Wright

I’ve always liked the view from my mother-in-law’s house at night,

Oil rigs off Long Beach….

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…

Timeline, Part 4.

*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.

(continued)

12

The birth of our daughter will be induced early, which is customary for babies of diabetics and high risk mothers because of the complications that can arise during the last weeks of gestation.  An amniocentesis is performed to ensure that her little lungs are fully developed, and that she’ll be able to breathe on her own. We wait for the results, walking around Baltimore Harbor, trying to pass the time.  I am exhausted, grouchy, and uncomfortable. The long, deep, nasal honk of the boats coming into harbor reflect the way I feel: heavy, slow and in need of a respite. A call with the results: her lungs are mature, we will move forward with the induction tonight, come to the hospital. S and my mother are with me at the hospital for support. The nurse begins an iv, and once I’m settled in, the nurse administers a dose of Pitocin. After just one dose, my water breaks, and I go into labor spontaneously, much sooner than anticipated. I labor through the night, with S and my mother by my side, trying to comfort me. S keeps trying to “calm me” during the contractions by sticking pictures of our dalmation in my face. This does not calm me. It is by the grace of God that I don’t rip the pictures out if his hands and punch him in the head.

Around 6 in the morning, I go into active labor and I want to start pushing, but my beloved Dr. N has not arrived yet. They ask me if I can wait a little bit. I try to resist the need to push as long as possible, but my body has stopped paying attention to any external information, I’ve gone completely inward (the phase of childbirth called transition), and this unfolding cannot be controlled as surely as the sun can’t be stopped from rising. I give in to the pushing, and Dr. N arrives soon after. I am breathing so hard, straining, unable to catch my breath. I can’t stop pushing but I need more energy and I need more air. I can’t go on, I pant. What I’m thinking, but don’t say out loud, is I need oxygen, please give me oxygen. One more push, Dr. N tells me, and she’ll be in your arms. I push with all my might, with all that I have left in me, and it is the most strenuous, exhausting, exhilarating moment of my life. She is healthy and perfect, Dr. N says catching the angel as she comes out. She is healthy and perfect.

13

By that time, my father has arrived, and we are all taking turns holding the angel and wiping away our tears. Joyful tears in a hospital. Joyful tears in a hospital? I didn’t know that was possible. I’ll never forget that moment.

14

Because of the intensity and force of my pushing, my eyes look as if I’ve been punched in the face. My skin is still broken and bleeding and red. I don’t sleep at all for the first two days after our daughter’s birth, but for the first time in months my lack of sleep isn’t due to discomfort. I am simply in awe of life, the wholeness that my daughter holds within in her. I can’t stop gazing at her, memorizing every detail about her. I will spend the rest of my life gazing at her, getting to know her, and it still will never be enough for me.

15

Ten days after the angel’s birth, I receive a telephone call at home from Dr. N’s partner. He’s had a massive coronary. But he’s okay, right? Right? He has died. Angel is the last baby he delivered. He was the person necessary to help me bring forth this baby. And now he’s gone.

S and I attend his memorial service while my parents babysit. There are hundreds of people there, and every single one of them has been touched in some way by this man’s life. The service is far from our home, and by the end of the service, I am hurting from having gone all these hours without nursing . My shirt is drenched with leaking milk, and my face is wet with the tears that don’t stop falling from my eyes.

16

The next six months: I’m beginning to realize that I’m not the bouncing back kind. Apparently, I’m not able to just bounce back from pregnancy, much less a difficult, sleepless, poison running though my blood type of pregnancy. I am so tired. Please let me sleep is the mantra that runs silently through my head: pleaseletmesleeppleaseletmesleeppleaseletmesleep. My body is about to give up. I’m barely holding on.

(to be continued)

Timeline, Part 3.

*if you’re new here, or have just wandered over, this post will make more sense if you start reading from Timeline Part 1.

(continued)

7

The wedding date is hurriedly changed. I will walk down the aisle 4 months pregnant.  We don’t know yet if S is a carrier of the CF gene, but I know with every bone and cell in my body that carrying this baby, bringing this baby into the world, and being this baby’s mother is my destiny. I’ve never felt this strength of knowing before in my life, never felt so sure of anything in my entire life. I tell S that I understand if he’s not ready, or if he wants to walk away from everything if it turns out that he is a carrier of the CF gene (and that there might be a chance our baby will be born with CF). He stays.

We later find out that S is not a carrier. We get married in December, and our wedding is a joyful, beautiful celebration of love, family, and friends but I can barely stand or dance because I’m so tired.  So I spend much of the night sitting with S, a stupid blissful grin plastered on my face all night, a hand on my belly.

8

I see a high risk ob-gyn recommended to me by my CF doctor. It takes me about 6 minutes to feel that I’m in the best hands I could possibly be in. I need to test my blood sugar about 12 times a day, and keep in constant contact with him to make adjustments to my insulin regimen. When he first tells me about the discipline and constant monitoring that will be required of me, I feel shocked and unsure. I am accustomed to arguing with my CF doctors about compliance, trying to get away with doing as little possible, and I wonder aloud if I’ll be able to do all that is required. Dr. N gives me a stern look that says everything I need to know. My  health, or lack of it,  already begins to have consequences that go beyond me, and in that moment I go from kid to adult. In that single moment I become a mother to my child.

9

My entire body is covered in a rash, bumps, hives, and sores. I am itchy, but not the itchiness you feel from a mosquito bite; it’s more like a poison coursing through my blood. Not a single doctor is able to tell me what exactly is going on, only that it is somehow related to the pregnancy and probably related to my CF liver issues. I can’t sit still. I can’t get comfortable. I cry when I have to spend more than half an hour in the car. I scratch until I bleed. I don’t sleep because I spend all night scratching my skin off. There is no relief. I am not allowed to take medicine, and I don’t want to add any more medicines to my regimen anyway. I have never in my life known such extreme discomfort, and I will remember, and fear, the sensation forever. My skin will never completely heal from this.

10

When I was about ten years old, my doctor at that time told my parents that they would never be grandparents. I only learned about this conversation very recently. My mother tells me she silently wept.

This was not the first time they had been stabbed by the arbitrary words and numbers tossed like darts by over-confident doctors. Your child will not live past 10. Your child will not live to go to college. Your child will not have a child.

You have no way of knowing this, was the simple and angry reply my father gave.

11

I sing to my baby in my tummy. I tell her (it’s a girl!) that I love her so much. I sing “You Are my Sunshine” and any song by Diana Ross.  Can she feel how loved she already is? Can she feel how wanted she is?

(to be continued)