Healing

My fingers trace the line of my port, following the curves of the catheter, feeling the hardness of the rubber septum. They do this often, unconsciously; it has become habit.

In the days after the surgery, I would sit and run my hands over the thick bandage, trying to divine through its layers of gauze where the port was, what it felt like to my touch. Those were days of pain. For the greater part of a week after the surgery I couldn't walk without pain; for more weeks after that I moved gingerly, afraid to jar the as-yet-unhealed tissues.

One day—the day the first bandage came off—I sat on the front porch, fingers following the catheter for the first time, and cried. I cried for everything the port symbolized. I cried for exhaustion, the weariness of two hospital stays already that year. I cried for the way my life was spinning out of control, morphing into something I no longer even recognized.

I remembered that afternoon tonight, as I found myself absentmindedly following the catheter line again. And I thought: it's amazing, what time can do. For a long time after my surgery, I was convinced that I would never be able to hug anyone tightly ever again. I was always aware of the port, always conscious of the foreignness, always so careful.

Now, it is a part of me. I never think about it unless I am actually in the chair watching the nurse descend on me with an access needle. I touch it thoughtlessly, out of restlessness rather than exploration. I have learned what hurts and what doesn't, and I don't have to think about it anymore. I hug tightly. There is no more pain.

It's amazing, what time can do.

This is what I am thinking about tonight. The way years erase the pain, bring the joy into relief. The way wounds knit into scar tissue—the strongest tissue in the human body. The way things that once were devastating become peaceful. The way that we cope, adapt, grow.

Heal.

Healing is a process, not an immediacy. I cannot expect it to come all at once.

But someday, in a month or a year or ten, I know that I will look back on this moment and think—hm, was I really in that much pain? I don't remember.

It's amazing what time can do.

Downtown Photoshoot

Tie Your Napkin Round Your Necksherry

In the book Ramona the Pest, Ramona Quimby goes to school and learns a song that goes like this:

"Oh say can you see
By the dawnzer lee light?"

She's not exactly sure what a dawnzer is, but she still thinks it's cool.

Today I was walking around the kitchen with "Be Our Guest" from Beauty and the Beast stuck in my head. When I got to this line:

"Tie your napkin round your neck, cherie,"

I suddenly remembered something: for years and years, I thought that the song was saying "Tie your napkin round your necksherry."

I figured "necksherry" was probably just a fancy way of saying "neck"—just one among the many baffling things that grown-ups did and said. I accepted it without a second thought.

As a child, I wanted nothing more than to be an adult. One day when I was four years old, I decided that I was "grown up" now, announced my rite of passage to my smirking parents, and from that day on told a lot of stories that started "Once, when I was little . . .".

To me, adult life was glamorous and sophisticated: it meant getting to set your own rules, having long conversations at the dinner table with other glamorous and sophisticated adults, and being in charge of your own darn bedtime. (That was the big one for me.)

I was sure that being an adult was pure happiness—nothing like the agonizing privation of childhood. (You know what I mean.)

Every now and then I think about how wrong I was. With every year I live, the problems of life get more complex, require more from me. In high school, things seemed tough—the health problems abounded, the pain and exhaustion were constant. I was sure it couldn't get harder.

Then I got married and had to pay my own health insurance.

And my yearly hospital attendance quadrupled.

And I had to learn about budgeting, and paying off debt, and so forth.

You see what I mean.

Sometimes I wonder: would I rather be a child again? Despite the early bedtime, I think I had a fairly idyllic childhood, full of imagination and the great outdoors. I was a happy kid.

But each time, I decide that I wouldn't go back. Though grown-uphood is exponentially harder, it is also exponentially more joyful. I sit here next to my incredible husband and think, it is all worth it, just to have this marriage. The relative complexity of my life's problems is made up for by the joy that is in my life—a joy that is less innocent, but so much deeper for having been hard-fought-for.

The difficulty of life is rivaled only by its richness.

And now, if you'll excuse me, I'm going to go tie a napkin round my necksherry and have a snack by the light of my dawnzer.

What are some of the crazy misconceptions you had as a kid?

Postscript: I showed Mahon the title of this post last night when I wrote it. Later we got talking about a different line of the same song:

"I never did understand why it says 'soup du jour / hot or derve," Mahon said as we lay in bed.

"Huh?" I said. "You mean, where it says 'soup du jour / hot hors d'ouevres?'"

Mahon started laughing. "Wait, does it really say that?"

"Yep."

"I always thought that 'derve' meant 'lukewarm'! You could have the soup du jour hot, or lukewarm! I guess yours makes more sense."

A Hard Time

Wednesday and Thursday were lived in a state of perpetual, sarcastic cheerfulness. I had a lot to do—after my clinic appointment I still had to drive a long way to Cache Valley, where I was going to spend the night; I spent the evening babysitting the Johnson kids while their mom got to go on her own medical adventures; I had to drive back to Rexburg the next day.

But last night, as I was chopping boiled chicken for our dinner, the dam broke.

Because I am having a hard time with this. A very hard time. And, for once in my life, I'm going to try and allow myself the time and space to work through it, deal with it, instead of shoving it under the rug and pretending to be strong.

In the last three months, I have been very comfortably slipping back into my cushy state of denial. It's not that the last months haven't had their own share of enormous physical challenges—as the lung trouble receded (or so I thought), the muscle pain skyrocketed—but I really thought my lungs were doing okay. I mean, okay except for the fact that I continually thought my English teacher was going to ask me to step out of class because I kept coughing so hard in her class, and okay except for the fact that the other night my chest was snoring so loudly all night long that when I got up to go to the bathroom in the middle of the night Mahon woke up too, looked over at me, and asked "Are you sure you're okay?"

But everything is relative. Before I went to the hospital in April, I was considering going to the ER on a regular basis. The coughing fits were so bad that I would sit there on the couch, seeing purple spots dance across my vision, and wonder if I could even mix myself up a neb. It was bad. Compared to that, the last three months have been easy.

And so I was able to (mostly) ignore it, let it slip into the background of my life. Last year I realized that it's easier to focus on the problems of Fibromyalgia—because Fibromyalgia is a nebulous thing, something that may haunt me all my life but may heal itself eventually, and may be painful but will never be life-threatening. CF, on the other hand, is hard to think about. Because I know that, no matter how many periods of respite I may get, in the end it will always get worse. Unlike cancer, CF is something that I will never be free of. It is a progressive, continually changing disease.

Right now my pulmonary function numbers are still remarkably high for someone my age, despite the equally high degree of instability which keeps putting me in the hospital. But in the last two years, it has become noticeably harder to keep them high. I have had to work on it, all day, every day. This upcoming hospitalization will be my 6th in 17 months. And I know that, eventually, even my hard work will not be able to keep my numbers from falling. That is the hard, cold, truth. Don't get me wrong—I hold high hopes for my continued longevity for a long time yet. But there is no denying the fact that as I get older, CF will only ever become a more prevalent part of my life, not less.

That is what this unexpected hospitalization symbolizes for me. In the past year and a half, the longest I have been able to stay out of the hospital is six months. Each time, I was sure that it was "the last time." I had lists of reasons to explain away each hospitalization, to make them all "just a fluke." And when I got out in April, I really was sure that I could stay out at least until December. I had no way of knowing that my numbers were still dropping, rather than getting better.

And it is hard. Am I allowed to say that on here? It is really, really hard. In the last two years of my life, I have felt the cage closing around me. This is my life for right now. And I don't want it to be. Yesterday, after a few hours of crying, I went on a bike ride by myself to a nearby park. There I lay on the grass and looked up at the trees and the sky above me, praying, Heavenly Father, how can I be okay with this? And what I came to was: I honestly don't know how to be okay with this.

And it will probably take me awhile to figure that out.

. . . . .

Early this year, Mahon bought me a miniature rose plant. It has lived on various countertops in my apartment ever since, in a cheerful yellow ceramic pot. Every few months during the winter, it would pop out a dark red blossom, delicate and small and perfect. When I left Tuesday afternoon, it was beginning to bud for the first time since late winter.

When I came back on Thursday, the bud was slowly opening into a shy, tentative blossom. Not red this time: pink, a perfect rich rose-pink. I find myself watching it a lot. It feels like a peaceful spot in my life, which at the moment feels a little like it's been caught up whole into a tornado, Wizard of Oz-style. The rose being lovely doesn't make my week any less hard. But it does give me something to smile about.

. . . . .

It is hard to write this post, and with each paragraph I have considered just deleting it all and posting something silly and happy. A few weeks ago, I was talking to my mom about the dilemma of that moment—what essay I would submit for my non-fiction class to read before the end of the semester. Nearly all of the essays I'd written for this class had been about my health, and I wasn't sure I was ready to bare that much of my soul to a class of thirty or forty mostly-strangers.

"Of course," my mom said. "Because you want people to cut you some slack for being sick, but at the same time, you don't ever want them to see how hard it is for you."

And it's true. When someone asks me how I am, I say that I'm okay. Because they don't really want to hear if I'm having a hard time, and I don't know what else to say.

But today, I am going to go ahead and say it. I am having a hard time. A very hard time. I haven't had this hard a time since I learned last spring that DMBA offered no prescription coverage and Medicaid would probably deny me. Because you know what? I'm not okay with this. I'm not okay with standing back and watching my life slowly being eaten by my disease. I'm not okay with the fact that, instead of going to Yellowstone after school ended, I get to go to the hospital. I'm not okay with giving up weeks of my summer, which is my personal sacred time to light and freedom and joy. I'm not okay with leaving my husband for another two weeks or more.

Last night on my bike ride, the words of Psalm 139:13 were in my head: "For you created my inmost being; you knit me together in my mother's womb." I keep coming back to that idea—God formed each strand of DNA. He knows who I am. He knows my genetic pattern perfectly.

And you know what? I think He also knows that this is really, truly, genuinely hard. And in His infinite wisdom, He also understands that it will take time to work through it, to learn to be okay with this new life. That it will probably be a long process. Luckily, He has enough grace to cover me.

So please understand, in these next weeks and month, that this is hard. That I am having a hard time. That it is very, very hard for me to admit that. That I am not depressed, just working through things. That as routine as this hospital trip may seem to an outside observer, it is a big deal in my life.

And that, despite it all, I do place absolute trust in God. And that I know that His grace is enough for me.

Elevators.

Tonight I was explaining the mystery of the disappearing hospital elevators to Mahon. I drew him a map.

"See," I said, "here is the hallway, and here is where the A elevators are, and here is where the B elevators used to be, only now some of them are gone. How do you get rid of two elevators??? I was so disoriented, it was crazy. I just stood around in the hallway looking confused. I mean, I don't even know how to get to 2 East anymore, if they got rid of the B elevators!"

Mahon looked at my map for a minute, his brow wrinkled in rememberance.

"I thought," he said slowly, "that we always rode the A elevators, not the B elevators?"

"No, no, it was definitely the B elevators," I said confidently. "Definitely."

"Hmmm," he said, still looking at the map.

I followed his gaze.

And, as I looked at my pen-drawn sketch, I started remembering.

Walking down the hallway from the parking garage.

Turning right.

At the first set of elevators.

The A elevators.

Going up to 2 East on the A elevators.

Ah.

Suddenly, everything was clear.

They didn't get rid of the elevators:

I was just riding the wrong one.

I told you it was a long day.

A Study In Irony

Not my picture. Do you think I own a helicopter?

Today was the most awesome day ever.

It started at 6:03 a.m., an hour and twelve minutes before my alarm clock was set to go off, when my phone beeped to tell me that it was dangerously low on battery. I tossed and turned for another half hour before giving up and getting up. Once I'd dressed and fed my tired self, I drove to the hospital only to find that most of the main construction that has been going on all year is now done. Translation: I got lost trying to find the new hospital entrance.

Then I got lost trying to find a way down to the pulmonary function lab, since the elevators I used to use are—you guessed it!—no longer there. (How do you move an entire section of elevators??? I am so confused about this.)

I didn't get lost on my way up to the pulmonary clinic, but I did wait. And wait. And wait. Even though I actually (for once) got there early, my doctor didn't make her way to my room until about an hour and a half after my scheduled appointment time.

When she came in, she looked at my PFT scores (which are down) and said, "I think you should come into the hospital when you get out of school."

Exactly what I wanted to hear! I was so overjoyed, I could have hugged her.

Once my clinic visit was finally over, I was instructed to head over to the lab to get some levels drawn. Wearing my backpack and carrying a huge box of enzymes in my arms (not awkward at all—luckily, a few minutes later I had the brilliant idea to shove all the bottles into the backpack and ditch the box in the nearest trash can), I head toward the lab. Only to realize: it was a long time since I'd eaten. I could feel my bloodsugar crashing like the Twin Towers on September 11th. My thoughts began to resemble a river of mud.

I veered into Starbucks and with fevered haste bought myself a sweet treat to eat while I waited for labs. Once my sanity was somewhat restored, the restaurant-style pager they'd given me (weird, or what?) went off, signaling that it was my turn to visit the vampires.

A charming blonde girl led me into a sterile room with rows of blood-drawing cubicles, sat me in a nice pink chair, and proceeded to spend five minutes examining my hands and arms with a worried look on her face. "Hmmm," she said once or twice. "I'm not seeing much . . ."

True to prediction, two needlesticks later she still hadn't managed to draw more than a few drops of blood. "I'm going to go get someone else to try," she said sympathetically, leaving me in the pink chair.

Her replacement came in, exuding confidence.

Ten minutes later, with his second needle probing painfully in my arm, he said: "Well, you really are a rare challenge!" Exactly what I wanted to be told by my phlebotomist.

Finally I mustered up my courage and told him to stop digging. "If they want me in the hospital in two weeks," I said, "they can go ahead and get it then!"

After getting lost two more times (trying to find the relocated cafeteria, and trying to find a clinic that I no longer knew how to get to since the pertinent elevator no longer existed), I made it out to the parking garage and was absolutely blessed to spend the next 3 hours of my life in heavy freeway traffic.

And the best part is, I drove all the way to Utah on Tuesday night and I get to drive all the way back to Rexburg tomorrow—solo! Man, there is just nothing like the muscle knots I get from driving for hours at a time. I can hardly wait. It would be a boring drive, except that my radio transmitter thingy broke and so I can no longer hook up my CD player to my radio and listen to my audiobook that way. Totally awesome.

See? Aren't you jealous?

I knew you would be.

Jamming It Up

[there would be a picture with this post . . . but apparently my internet connection is too slow for pictures tonight.]

The last 5 1/2 hours of my life have yielded:

2 loads of clean dishes unloaded and put away
2 loads of dirty dishes loaded into the dishwasher
1 dinner made
2 people fed
2 games of Skip-Bo lost by me
4 pounds of strawberries washed, capped, and carefully chopped in the blender
2 batches of Sure-Jell pectin prepared in the microwave
6 pints of strawberry jam
1 freezer cleaned out and reorganized to make room for the jam once it sets
1 spotlessly clean kitchen

No wonder I had no time to blog today.

(And no wonder I'm staggering on my feet.)

The Name of the Dream

I mentioned last year that the fourth of July was probably my favorite holiday.

Well, it's still true.

I don't think often enough about what a blessing it is to live where I live. The book I'm reading right now is about remote Pakistani villages in the Himalayas. Early in the book the writer points out that we tend to romanticize remote villages for their "simplicity of life." That, he says, is a myth. Their lives are hard. They roast in the summer and freeze in the winter. They don't have enough food. One in three children die before they're out of childhood. Water is scarce; sugar is scarcer.

And so I remind myself to give thanks for this country that I live in—a country that has both comfort and freedom. I have enough food, I have a luxurious home, I can wear whatever I want to wear without going to jail. I can say what I want to say and worship in the way I want to worship.

Every year at this time I spend a day or two thinking about the beginning: the war, the sacrifice, the fight for independence. And I want to honor those men who gave their hearts and their lives to build a new kind of country, a land of opportunity.

I want to honor them, and the God who inspired and blessed their efforts.

Renewing

A newspaper headline I saw yesterday warned of the potential for floods this summer, as water levels continue to rise.

A few weeks ago a BYU-I student drowned in a local river at a popular swimming spot, swept away by rogue currents created by the unusually high water.

It has rained in this desert for the past two months. Though it is no longer raining solidly every day, the summer storms still swoop down out of the blue sky with weekly regularity. An hour ago grey clouds rolled in outside my window; now the rain blows against my windowscreen while the thunder rumbles outside it.

As I watch the storm, I am thinking about renewal.

About how something like a thunderstorm has great power of destruction—both directly, through strong winds and rain and lightning, and indirectly, through flooding and high water—but also great power to build.

Beneath the rain, plants thrive.

Beneath the rain, dirt is washed away and the streets shine.

Beneath the rain, crops grow tall.

And suddenly, I am awash with the presence of the Spirit of God.

This morning after the sun had come up, I slept fiftfully. I lay in my bed dreaming, but also somehow acutely conscious of my body spread across the bed, and how it was aching. Pain, pain, pain. I woke up and had trouble lifting my arms.

This is how it has been for the past weeks. I spiral drunkenly between happiness that it is summer, joy at what my life is, delight in the things I am able to do—and tears, sorrow, grief, frustration for the pain and weariness and utter inability of my body at this moment in time. A day that begins in euphoric celebration easily ends in tears, when I am so run down by the past ten hours that I curl up on my couch and cry from the tiredness of it.

I will not lie: I do not like this. I hate it. This is not the me I see; this is not the person I feel I am. I cannot dance, cannot lift my violin, cannot do much.

But every now and then I come back to this truth:

This is my thunderstorm.

This is my renewal.

This is how God burns away the less-savory parts of me, making me the woman I have the potential to become.

The woman He wants me to become.

The woman that I could not reach for on my own, because she seems too far out of my grasp.

People wonder how God can be a loving God and yet allow His children to suffer pain.

There is no process of renewal I know of that does not involve great pain—literal burning away of imperfections. Think about glassblowers, metal refiners, the way coal becomes diamond. About the way land springs into new life after a fire. The way volcanic soil is the most arable.

The way this steady rain seeps into the ground, filling up the aquifers below.

God is a loving God.

That is why He sends the rain.

Father's Day, Revisited (Almost 2 Weeks Later)

I meant to post this on the Sunday following Father's Day (since the Sunday of Father's Day was occupied by my Letter to my Dad)—but, well, life got in the way.

I can put a date on the exact moment when I began to fall in love with Mahon:

October 27th, 2007.

After months of being "just friends" (and driving the point home to him that we were just friends and would never become more than that), there was one magical day when that started to change. I went home that night thinking, I could really see a life with this guy. For a number of reasons, that thought scared me more than it thrilled, and only heightened the confusion and misery of the next few weeks.

But the day itself was golden.

He took me first to carve pumpkins in Idaho Falls with his family (who I had never met—and, even though I had no intention of ever dating Mahon, I was absolutely terrified to meet them). We spent the afternoon debating over whose pumpkin was best, hanging out with his parents and brothers and sisters, and taking a brief excursion to Target with his nieces, Ashley and Katie. The four of us marched around the store, choo-chooing as we sought a new desklamp for my bedroom. At one point, the girls took turns riding on Mahon's shoulders (which I have since learned is quite the specialty of his).

As we walked through Target I thought, This man will be an incredible father someday.

And I felt a pang, wishing for a brief moment that my life path didn't seem not to include him.

. . . . .

Now, almost a year into marriage, that trait that I glimpsed in Target is something that I see on a regular basis. Mahon is incredible with kids. The first time we visited my friends the Johnsons in Utah together, he had won nine-year-old Benjamin's loyalty away from me in ten minutes. Benjamin's three-year-old sister, Laura Kate, has a Playmobile figurine named Mahon who she carries around with her. Rachel, Jenna, and Jared think he's awesome. His nieces adore him. Someday, he will probably have grooves in his shoulders from all the airplane rides he gives.

A few weeks ago when we were in Nibley staying with the Johnsons and babysitting their kids for the morning, I asked Mahon to keep an eye on Laura Kate while I took a quick shower. When I got out of the bathroom, he was sitting on the couch with all three kids grouped around him, patiently reading a book of Book of Mormon stories and explaining to Laura Kate who all the prophets were.

Days like those are the days when I just cannot wait until it is our turn to start our family. I can't wait to see him read to our children, to put them on his shoulders and zoom them around the room. I cannot wait to see him become a father.

I know he will be an incredible one.