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.

——————

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….

The most effective aphrodisiacs.

You may as well know this: S and I fight. Loudly. We have a hot and heated relationship. We’re mad about each other, fiercely devoted to each other, as close as two separate entities could be. And we fight that way, too. Especially on important days, like birthdays and anniversaries. Not really Valentines Day, because we don’t put too much stock in a Love Day established by a Pope in 496 AD. But today we fought. And oh how we fought.

We’ve been together for over a decade (which is A LOT if you’re counting in Hollywood years) and our fights have actually decreased in frequency and severity over the years. But they still rear their ugly heads every once in a while. What do we fight about? The usual- our different approaches to money, sex, and parenting. These are the most common issues that couples tend to fight about. But add a chronic illness into the mix, and, for better or worse, it intensifies everything.

For example, money: whatever money issues already exist are compounded by the never-ending medical bills. A single one of my prescriptions costs $5400 a month. A MONTH. Luckily, we have good insurance, and so our co-pay is about 100 bucks. But considering I take about 20 different medications, when you start to add all the co-pays, doctor visits, and durable equipment fees, not to mention the costs of things not covered by insurance, the bills start to pile up. And so does the stress. Not a day goes by that I don’t feel a moment of gratitude for our insurance coverage, but I also can’t help but wonder how we would use that extra cash if we weren’t spending it on medical bills.

It pains me to admit it, but CF is a part of our relationship, a silent body exerting its power over our choices, our fights, the way we spend our time and money, and the way we love each other. CF heaves stress upon stress on our marriage. I see it, know it, and hate it. But, when illness and death are always somewhere on the periphery of life, there also comes a gift: you try your hardest not to take love for granted. We both know that there’s an expiration date on this marriage, sooner rather than later, and the reason for separation will not be divorce. No 50th anniversary for us.  So we do our best to do our best with the time we have, and try not to wonder how much time is left.

Do you ever wonder how much time you have left to love your love? Your kids? Your mom and dad? Your work? Your pet? Your best friends? Asking yourself this every so often will do wonders for your relationships. It may not reduce the fighting, but I promise it will increase the loving.

So, what are the  most effective aphrodisiacs? A heck of an insurance plan works wonders in the bedroom. Death nearby. And sometimes, a poem too.

Lean toward the one(s) you love, as Stephen Dunn teaches us to do in his poem that I’ve selected today. Even if it means you have to swallow your pride, be the first to utter a word and break that deafeningly loud after-argument silence.

S, this is for you.

After the Argument by Stephen Dunn (clink on link to read the poem in its entirety and hear it spoken by the poet)

Whoever spoke first would lose something,

that was the stupid

unspoken rule.

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.