Making My Time Worthwhile

I am no stranger to leading a quiet life. My junior year of high school was spent moving between bed and couch after a crippling case of mono left me unable to do much except journal and wish for more sleep. My life from that point on has involved much less “doing” and much more “resting” than it ever had before; I have learned to value quietness and contemplation, in addition to big dreams and grand accomplishments. Still, even after eight years of this new life, I find myself struggling on a regular basis with my own need to be doing something that looks and feels “worthwhile” and “productive” with my quiet time.

Days before Christmas, my husband and I took a romantic trip to the labor and delivery unit of our local hospital to figure out why my then-28-weeks-pregnant self was contracting regularly. Although we never got many conclusive answers, we didn’t have a baby that week either, and eight weeks later I am still pregnant—and still contracting.

These last two months have seen me confined to the couch for a new reason: pregnancy complications. Once again, I’ve found myself spinning through the same old doubts and worries, letting the same anxieties creep back in to my head and my heart.

A week or two ago, I decided to put together a to-do list comprised of productive, worthwhile things that I could do from my resting place on the couch. For a few days, I worked industriously on my list, checking things off and feeling proud.

And then, one day, I was tired. The contractions had kept me up for most of the night before, and I was physically and mentally exhausted. I sleep-walked through the morning, doing little bits of nothing here and there, my sluggish brain unable to keep up with much of anything.

Halfway through the day, I found myself locked in a round of internal self-castigation. Look at you, wasting your whole day, said the nagging voice in the back of my mind. Can’t you do anything that would be worth something?

Suddenly, instead of just feeling overwhelmed and defeated, I found myself rising up against that nagging voice. Isn’t it worth something to care for myself, and for my baby? I found myself asking. Isn’t it worth something to take some time to cherish my body so that it can stay strong and do what it needs to? Isn’t it worth something, sometimes, just to rest?

I have always struggled with this idea—that resting, taking care of myself, can in and of itself be a worthwhile task. That I don’t have to be filling every single quiet hour with efficiency and the kinds of accomplishments that can be crossed off my beloved to-do lists.

That day, I created a note on my computer and wrote these words as a reminder to myself: “I don’t have to be curing cancer in my resting time. I can be doing whatever I need.”

Sometimes, what I need is to be busy, to be getting a lot done. But sometimes, what I need is just to go easy on myself. To give myself a little grace. To let go of all my often-unrealistic expectations and just be.

In a society that values busyness and accomplishment, that can be a difficult pill to swallow. But still, I imagine that if I ever get the art of “simply being” down someday, I will be a better person for it.

Do you struggle with allowing yourself time to rest and rejuvenate?

The Other War On Women

Birth control. Binders. Bodies. Babies. As last fall’s presidential election came to a head, the phrase “war on women” became commonplace, part of the traditional vitriolic mud-slinging that both sides used against the other. As a woman, and one who places a high value on the freedoms of women, I of course followed the back-and-forth debates with interest, nausea, or amsuement, depending on what I was hearing.

But during that same period, I found myself spending a lot of time thinking about a different “war on women”—the war of woman against woman, the war that we wage on each other, no men required.

At the beginning of my pregnancy last summer, I was talking to a pair of newlywed friends about my quest for the best pregnancy books.

“I don’t want to read anything that is going to make me panic about what could be wrong with my baby, or feel guilty about the pregnancy and parenting choices I make,” I told them.

The husband wrinkled his brow in confusion. “What do you mean, feel guilty?” he asked. “Why would parenting books make you feel guilty?”

I had to laugh at his response. It hadn’t taken me long after seeing that positive pregnancy test to come to understand just how incredibly saturated with guilt the world of pregnancy and parenting really is. Pregnancy books, websites, and forums are filled with dramatic stories about the harm you could potentially do to your unborn baby through seemingly innocuous things including (but not limited to!) nutrition, exercise (or lack thereof), medication, and even hot baths. Champions of epidurals or unmedicated childbirth regularly spar over the various merits of their preferred method, often making it seem like your child’s entire future life could hinge on whether or not you had a medicated labor and delivery.

And things only get more heated when you get into the world of parenting, with all its various methodologies and ideologies and conflicting advice. Breast or bottle? Crib or co-sleeping? Baby swing or babywearing?

Parenting isn’t the only arena in which women seem to spend an awful lot of time attacking each other, of course—it’s just the one I’ve been immersed in the most as I’ve prepared to welcome this new little one into the world. I’ve also seen women go to bat over things as big as career choices and hiring help, and things as insignificant as dyeing their hair or wearing makeup.

And let’s not even get started on the pressure we put on each other when it comes to what a woman should look like.

Don’t get me wrong: I’m as guilty as anyone else. I have on far too many occasions found myself judging another woman’s lifestyle choices, or fashion, or hair, or parenting, or career path. I’ve cringed on seeing wardrobe choices I don’t agree with and raised my eyebrows at life paths that seem less-than-ideal according to my worldview.

But still, I can’t help thinking:

What would the world be like if we women didn’t spend quite so much time and energy waging war on each other?

My resolution for this year is to give myself more grace—to stop holding myself to impossible standards, to have a little compassion for the times when I inevitably fall short (and then do so again, and again, and again). I’m vowing in 2013 to be a little kinder and gentler on myself, accept my own weaknesses and allow myself a little more love.

And all of this, this thinking about new year’s resolutions and about the war among women, has me thinking also: What if we all could do this, just a little, for each other? What if we could allow each other just a little more grace, a little more love, a little more acceptance? What if we could let go of our own lifestyles and convictions just long enough to recognize that, regardless of whether we feed our children by breast or bottle, we are all worthy of love?

It might just be a powerful change, indeed.

Do you ever find yourself at war with other women?

Drinking Deep

I love fresh starts: springtime, birthdays, the turning of a new year. January always gives me a feeling of limitless possibility, as well as a craving for inward-turning, reflection, the chance to take stock of where I’ve been and where I want to go. I rang in the New Year this year with a grateful heart, filled to bursting with amazement at everything that has come into my life in the last twelve months: A new home, a true medical miracle, a tiny life kicking and growing inside me. This time last year, I could not have imagined the wealth of happinesses that 2012 would bring. Now, in retrospect, I am awed.

As the weeks of December ticked by, I found myself thinking about my hopes and dreams for the new year. I am a lover of goals and a maker of resolutions; I love having things to bring structure and order to my life, and ideals to strive for. Since high school, I’ve faithfully set resolutions and chosen themes to focus on for each new year, and many times I’ve seen my life change in profound ways as a result.

Still, as I pondered on 2013, I felt stumped. What could I resolve to do in a year that would bring so much change, so many unknowns? While this year is still young, my husband and I will be welcoming a newborn into our lives, adding a completely new element into our otherwise familiar existence. Could I really make resolutions when I had no idea what this year would bring?

Could I ask anything more of myself than simply to be there, living and breathing the new adventures that 2013 brings?

I just want this to be a year of drinking deep, I found myself thinking. I don’t want to miss a second; I don’t want to get to the end and regret the times I wasn’t present for the moments that counted.

And that, in the end, sums up my sole resolution for this new year:

Drink deep. 

Be there, wherever “there” may be.

Give myself a little grace when I inevitably fall short.

Let go of a few of those things on my to-do list.

Cherish these last weeks of pregnancy, and cherish the hectic newborn weeks to come afterward.

Let myself be filled with love for my new little daughter—this soul that stands on the cusp of this world—and let go of less important things.

I don’t know, here on the threshold of the coming year, what 2013 will bring. Like most years, I imagine it will carry its share of pain along with the joys, and I’m sure that keeping my temper and equilibrium after one too many nights spent soothing a newborn will be a challenge. There will probably be moments of exhaustion, of bleary-eyed apathy, of downright frustration.

But there will be so many moments of beauty, too.

And I don’t want to miss a single one.

Slowing the Season Down

I love the holiday season. I love the air of festivity, the sense of wonderment that seems to slip into the world as we polish off our Thanksgiving leftovers. I love catching glimpses of my neighbors’ Christmas trees through unshaded windows in the dark of early evening. I love the happiness, the large-heartedness, that seems to linger in the atmosphere as days tick on toward December’s end. But I won’t lie: Sometimes I hate the holiday season, too.

In the days leading up to Thanksgiving, my husband—whose inner ten-year-old makes an appearance as soon as Christmas is on the horizon—asked me almost every day, with great enthusiasm in his voice, “Are you excited for Christmas?”

“I’m not ready for Christmas,” I said every time. I meant that I wasn’t ready for the rush and bustle, the overcrowded calendar that seems to be part and parcel of the modern December experience. I was looking forward to all of the things we had planned for the season—family parties, Advent Sunday celebrations, tickets to see a live performance of A Christmas Carol—but I was dreading them, too. I’d struggled enough during November with a relentless schedule and the toll it took on my pregnant, chronically-ill body.

As November waned, my husband and I returned from a Thanksgiving trip to visit family with me in not-so-great condition. A few days later, we bundled into coats and scarves and walked two blocks to a nearby tree stand to purchase this year’s Christmas beauty, which my husband proceeded to carry (yes, carry) home in a cinema-esque show of manliness. We tumbled back into our house with our prize, laughing and red-cheeked.

Within hours, I was in the grip of an unpleasant bout of pleurisy, a usually-not-serious-but-very-painful lung condition. Afraid to take the narcotic in my kitchen cupboard—saved for just these attacks of pleurisy—in my gravid state, I suffered through the pain all night, unable to get a deep enough breath to drop off to sleep.

I watched the clock slowly tick on through the night, and I thought, I have to re-think my December.

The next morning, after I’d managed a few hours of restless sleep, I sat down and looked at what we had planned for the month. I sent e-mails bowing out of family events that were too far away or too much to handle. I bought airline tickets to Portland so that our post-Christmas visit to my parents could be made without a thirteen-hour drive each way. I prioritized the list of errands I needed to run and decided to ignore the ones that weren’t urgent.

And in the two weeks that followed, I slowed down. I listened to my body, letting it tell me what it needed. I put off those errands until they became necessities. I didn’t worry so much if the dishes stayed in the sink until evening.

As I sit here writing this now, in the twinkling glow of my Christmas tree lights, I am glad for that forced slowing-down. I wouldn’t have chosen to spend the beginning of my December couch-bound and sick, but it was, I think, what I needed.

Because, in the stepping back, the conscious choice to let go of things that weren’t urgent (and even some things that seemed urgent), I found my way back into the love of the holiday season. I played Christmas music on Pandora and drank peppermint hot chocolate. I let the warmth and the joy of the season seep in, without letting the guilt come with it.

I am far from perfect—but, I am reminding myself, I am enough.

Maybe next time I’ll be able to remember the importance of slowing the season down without being forced into it.

How do you deal with the holiday season madness? Do you find yourself slowing down or speeding up as Christmas draws closer?

Effortless

The sky overhead is grey and glowering, locked with low-hanging clouds that make the earth feel squeezed. The air is cool, breezy, hovering between autumn and winter. I walk with my hands in my pockets, my wool coat held closed with the only button that will still reach over my pregnant belly. I am never sure whether I like these long solitary walks or not. I love the nip of the air, the feel of the wind on my face, the wild scent of raindrops as the light drizzle hits the pavement below me. I love the time alone with my thoughts, the feeling of escape, the openness of the world around me. Still, there is something monotonous about the churning of my legs, one step after another, the same motion repeated again and again. They don’t feel tired today, my legs. After my first block, I decide to keep walking, turning away from my house and widening my path.

The wind picks up as I walk up a leaf-carpeted sidewalk; it snatches the leaves into the air and for several long seconds, I am carried along in a rush of dry leaves, swirling around my feet and legs with a sound like water. It is a magical moment, a good-to-be-alive moment, and I find myself rejoicing in the day—in the wind, in the leaves, in the strength of my own body.

When I get home and plot my meandering route into the computer, I am shocked to find that I walked two miles easily. Effortlessly, I think, remembering the way my legs kept going, the way my breathing was steady. I am overwhelmed by some emotion I cannot name. At the beginning of this year, I couldn’t walk one mile without it feeling like a monumental effort, without coming home afterward and collapsing onto the couch.

This is my year of miracles, my year to make medical history. Eight months ago I started a brand-new medication for cystic fibrosis, groundbreaking in its abilities, but still only available to handful of CF patients with a relatively rare mutation—a mutation I happen to have. In these eight months, I have watched my life slowly change in ways more dramatic than any I could have imagined. I have walked further. I have felt better. I have seen my lung function go up instead of down, and gone for two-thirds of a year without ever feeling the need for a hospital admission. After a year and a half of infertility, I find myself pregnant with a miracle baby and breezing through the pregnancy without any serious health concerns.

These are the kinds of things that you never expect, with a terminal illness. You don’t expect to get the chance to travel back in time, to reach a place of better health and more stability. You don’t expect to spend eight months watching as, one by one, so many of your longest-held dreams come true.

A few weeks ago, I sat in a hard plastic chair, beaming, as a stream of medical professionals came in and out of my room. Each one exclaimed over my lung function test results, my burgeoning belly, my newfound stamina, my health in general. In the lulls between visits I could hear the patient next to me—young; nearly all CF patients are young—talking with his nurse as she replaced his oxygen canister. They wondered aloud if he was up to the walk down to the cafeteria, or if his mother should take him in a wheelchair.

The cafeteria is almost directly below the pulmonary clinic, perhaps five hundred steps.

That afternoon lingered with me for days, and I found a familiar question returning again and again to my heart. Why me? I wondered. Only this time I was on the other side of the fence: I was not asking Why me? Why is my situation so much harder?

Instead, I was asking Why me? Why am I so blessed?

These eight months have brought with them a wealth of complicated emotions. I feel consumed with joy each day, overwhelmed by my own fortune. Every day I walk further. Every day I feel my tiny daughter move inside me, a sensation so magical it brings tears to my eyes, remembering all of the days I thought I would never feel this.

Every day, I am grateful.

But there is frustration, too, and guilt. While I have been experiencing a year of miracles, it seems like nearly all of my friends with cystic fibrosis have been locked in a year of trials. Today, when I get home from my two-mile walk, I learn that one of my very oldest and dearest friends has spent the week in critical condition, unable to breathe on her own.

Like that afternoon in the doctor’s office, it is a stark contrast.

I know that all of my friends are thrilled for me in my good fortune, and I am certainly grateful for it, incredibly so. I wouldn’t trade this year for anything; not only has it changed my day-to-day standard of living, but it has flung open so many doors to the future, exploded all of the barriers that used to exist. In a community of disease where the average life expectancy has yet to hit forty, suddenly old age doesn’t seem like such an impossible achievement. But still, I wish that I could share it, could watch all of the people I love experience similar miracles.

I cannot, of course—not yet, at least, not until science has come a little further and there are miracle medications for more common CF mutations. All I can do, for now, is to make sure that I never take this new life for granted.

And so, now, I pull back on my shoes and re-button that single button on my coat, and go outside again. I am not ready to be done walking yet, not ready to be done relishing the feel of the wind on my face and the strength in my body.

Wanting to hold on, for just a little longer, to that feeling of effortlessness.

Envy and Gratitude

For as long as I remember, I—like many girls—have loved the Anne of Green Gables series. Some of my earliest memories involve falling asleep at night to the sound of Meagan Follows reading Anne of Green Gables and Anne of Avonlea; to this day, there are whole passages of those particular books embedded in my subconscious, in Follows’ melodious voice. I have always found much to identify with in Anne Shirley; like Anne, I was an impetuous, talkative, dreamy child who used big words and was once paid money to keep quiet for ten minutes. (I succeeded, by the way.) Like Anne, as an adult I struggle with keeping my temper and tending to take life through a rather melodramatic lens. Even as a child, one of my favorite books in the series was also one of the less well-known: Anne’s House of Dreams, the fifth Anne book, which covers Anne’s first years of marriage to the swoon-worthy Gilbert Blythe. I’m not sure why, as a preteen, I found myself drawn to a book about new marriage—especially one that includes a heartbreaking subplot that still makes me cry every time I read it—but the love has persisted. Once I became a newlywed myself, and experienced, like Anne, the pangs of disappointed longing for motherhood, the book earned an even more special place in my heart.

One of the most interesting characters in Anne’s House of Dreams is Leslie Moore, the victim of a loveless marriage who is now left caring for her incapacitated husband in the wake of a traumatic brain injury. Leslie is complex and confusing, by turns sweet and sour; she becomes good friends with  Anne, but has a difficult time not being jealous of Anne’s newlywed bliss. Halfway through the book, after Anne suffers a tragedy herself, Leslie opens up about her conflicted feelings. Describing the first time she saw Anne driving into town with her new husband, Leslie says:

“I hated you in that very moment, Anne . . . it was because you looked so happy. Oh, you’ll agree with me now that I am a hateful beast—to hate another woman just because she was happy,—and when her happiness didn’t take anything from me!”

I must admit: every time I read about Leslie’s passionate jealousy, I feel something of a kinship. Envy has always been my besetting sin. I can vividly remember being fifteen years old, lying on my bed, my soul harrowed up with frustration over some now-forgotten inequality. I’ve always been prone to jealousy, coveting my friends’ lives, their children, the apparent ease that is always the illusion of a life seen from the outside. Like Leslie, I’ve been guilty of feeling anger at someone else for a happiness I couldn’t share, even when that happiness took nothing from me.

Earlier this year, I had had enough. I resolved that 2012 would be the year that I learn to overcome that natural jealousy, that I learn how to be truly content with my life exactly where it is, without feeling the need to look over my neighbor’s fence. And as I pondered, and journaled, and read, and soul-searched about the issue, I came up with a deceptively simple answer:

Live in gratitude. That was it. Could it really be that simple, I wondered? Could a life lived in gratitude have the power to overcome the vice I’d struggled with for twenty-four years?

I set about testing the principle out. I promised myself that the next time I caught myself looking with envy at somebody else’s life, I’d think instead, What they have is wonderful. But what I have is wonderful, too.

And, to my surprise, it worked. I felt myself becoming more and more aware of all of the things I loved about my life. I found that suddenly, even the things that hadn’t turned out in the way I wanted them to had become sources of blessings; I began to rejoice over all the unexpected twists and turns I’d encountered in my life and the exciting and unanticipated places they had taken me. I discovered, to my delight, that scenes and situations that had once filled me with jealousy and bitterness no longer disturbed my equanimity—unless I let them.

I was the “master of my fate,” I realized; it was up to me to decide what the condition of my heart would be on any given day. Simply the act of acknowledging my own power, and making a conscious choice to live in gratitude and let go of my envy, was bringing more change into my life than I ever could have imagined.

It hasn’t been a perfect, or a permanent, change, of course. Since that May day when I made my decision, I’ve experienced plenty of periods where I’ve let go, let frustration and ingratitude creep back into my life. Like anyone, I’ve had down days—but they have come less frequently than they did before.

As I write this, I find myself marveling over the difference that such a simple choice has made in my life. It seems silly, elementary, hardly worth discussing. But I can’t shake the idea that, this year, I have come upon the secret of happiness:

And its name is gratitude.

Kitchen Meditation

The potatoes are cold in my hands, imbued with the chill of the refigerator. My husband will only peel potatoes after they’ve been sitting in a bowl of warm water for a few minutes, but I prefer to do it quickly and go on to other things. Dusty brown peelings curl off into the trash can, the little pile growing fast as the white flesh of the tuber is revealed. When the potatoes are chopped and placed in boiling water, I raid the crisper for other vegetables: Carrots, onions, fresh garlic (a staple in my kitchen), celery, corn. I have a method for chopping each different vegetable—the carrots are sliced in half long-wise and then diced into half-moons; the onions are gently scored in both directions across the top, so that when I cut off an inch from the onion’s face, I’m rewarded with a shower of evenly-chopped pieces falling to my cutting board.

I vividly remember a conversation I had shortly after getting married, when I was still part-time in college and struggling to get the degree I knew was out of my reach for the time being. “I want to like cooking,” I had said into the phone. “I feel like it’s the kind of thing that I should enjoy, that I could enjoy. I feel like it’s something that could bring me a huge amount of satisfaction. But I’m always just too tired.”

And I was. Even with a light class load, by the time I got home from my one or two classes in a day and finished my homework, I’d exhausted my slim supply of energy for that day. I made dinner each nigth with my husband because I believed in good, home-cooked food, and I loved eating the fruits of our labors—but I rarely enjoyed the experience. Always, I felt that frustrating sense that the true joy of cooking was just out of my reach, the kind of thing I ought to feel, but didn’t.

I baked bread, and ended up so tired I could hardly enjoy the finished product. I made muffins, and thought that cleaning the muffin tin might be the death of me. I cooked soups and puddings and even, on occasion, things like pasta from scratch, reveling in the knowledge that I could identify every ingredient that went into our meals—but ultimately, feeling utterly spent by the task.

Two years later, when I began the true transition from part-time studenthood to full-time homemaking, I was surprised to discover that suddenly, I was beginning to love cooking. All at once, as I began to spend less time in the classroom and have more time for the kitchen, I was feeling all those things I had thought I should feel before. Baking became a celebration. Chopping vegetables became a game. Doing the dishes afterward became a meditation.

Now, as I sweep a neat pile of onions and carrots from my cutting board into a pan for sautéeing, I think about that time of transition. Cooking still tires me, of course; it’s a physical task, one that requires time spent standing up, and often one that demands strength in the kneading or rolling out of dough. But in my life as it stands now, that’s all right. I may be tired afterwards, but I have the liberty to spare a few minutes for rest and recovery.

It is, I think, a perfect example of the unexpected joy the last few years have brought me—my adult life in a microcosm. For such a long time, I was frightened of my plans being changed, terrified of being forced to find something new to define myself. And yet, when that change did come, it wasn’t meaninglessness that lay on the other side—it was just a different kind of purpose, a different shape to my days.

A different shape, but a good one.

I pour extra-virgin olive oil over my pan of vegetables, letting the rich, fruity scent of the oil assail my senses, hearing the crackle and pop as it hits the bottom of the hot skillet.

And in this quiet kitchen moment, I know what it is to feel peace.

My Wise Voice

Two years ago, I made the difficult decision to take a medical withdrawal from college. It was a decision that was years in the making, and one that brought with it a sense of crisis about what I should be doing with my life. As I transitioned from full-time student to part-time student to, finally, full-time wife, homemaker, and caretaker of my fragile health, I fought a continual fight with guilt—the feeling that I wasn’t doing enough, that I was slacking off, that I ought to be accomplishing so much more. For all of my life, the thing I have wanted more than anything is to be a mother. The past few years have been ones of longing and impatient waiting, until I learned with awe and amazement this summer that I was pregnant. Now, a third of the way through my second trimester, I am preparing for yet another transition: From stay-at-home wife to stay-at-home mother.

I suppose I always thought, in those years of waiting and wanting, that if I finally did get pregnant, that voice of guilt would disappear. Pregnancy is a physical ordeal for any woman; for those of us who live with chronic disease and are also blessed to have the chance to create new life, it brings with it added challenges. I used to think that, if given that chance, I would finally be able to relax, to cherish myself a little, to allow my body all the rest and comfort it needed.

It is probably no surprise when I say that it hasn’t been that way. Sure, I’ve been a little more motivated to make sure that I’m taking the best possible care of myself, since taking care of myself now also translates into taking care of baby. Still, it has surprised me, at least, to find that the guilt is largely unchanged. Now, instead of berating myself inwardly for not getting the dishes done, I spend my hours on the couch worrying about all the cleaning and organizing that needs to happen before the baby gets here. When a day goes by in which the most I’ve accomplished is yet another trip to the doctor (because my pregnancy is high-risk, I have the privilege of seeing three!), I find myself returning to all the old patterns of self-castigation.

Several winters ago, while visiting with a pair of wonderful friends, one of them said something about the importance of “listening to your wise voice.” That phrase has stuck with me ever since, through the intervening years, always giving my memory a gentle prod whenever I need it most. The idea of “my wise voice” has become, to me, the opposite of that voice of guilt and castigation.

It is my wise voice that tells me when I am doing right, even if it seems counter-intuitive. It is my wise voice that quietly whispered to me that that medical withdrawal two years ago was exactly the right thing to do. It is my wise voice that cautions me when I am acting out of pride, or shame, or guilt, or nervousness. It is my wise voice that continually prompts me to live with generosity and kindness—even towards myself.

I’m learning—or perhaps I am being reminded—through this pregnancy that there will always be the opportunity for guilt, because there will always be something more that can be done, or accomplished, or checked off a to-do list.

But I am learning, too, that I always have the chance to listen to my wise voice.

On Deserving

My sleep patterns change according to the season. At this time of year, as summer fades into fall and the days grow shorter and darker, I sleep deeply and long—but once the year has rolled around again, and light peeps into my bedroom late into the night and again early in the morning, I develop seasonal insomnia. Sleep doesn’t come easily to me in the springtime; even when exhausted, I feel the pull of so many things I’d rather be doing than closing my eyes. This year, as sunny days peaked around Midsummer, I found myself once again in the throes of my circadian sleeplessness. My mind seemed to whirl and spin, filled up with the promise of all that sunshine, leaving me spent and ironically too tired to do any of the things on the to-do list that called me out of bed again and again.

As the sun-filled days passed, I tried to unravel the layers of physical, emotional, and spiritual components to my lifetime of insomnia. I came up with many ideas: I didn’t feel safe; I had too much to do; I had a hard time convincing my irrational mind that I’d get more done if I also got more sleep.

And then, one afternoon as I lay on my couch trying and failing to take a much-needed nap, I thought: I don’t deserve to sleep. I don’t deserve to rest.

And that was an attitude I recognized. “Deserving” has played a large role in my life; I fight a constant battle with the insidious little voice inside me that is always fixated on what is fair and what is deserved. Because my energy is limited and must be parceled out in careful allotments, I find myself locked into a continual war with this voice of guilt over how I spend my time.

I don't deserve to rest, because I haven't done anything worthwhile today. I don't deserve to take it easy, because I have been lazy all morning. I don't deserve to have my husband make me dinner, because I ought to get up and do it, whether I feel well enough or not. Sometimes consciously, always unconsciously, I have a running tally always going in my mind. X amount of rest requires X amount of doing. If I have taken it easy today, I need to work extra hard tomorrow. If I have missed this many hours of church this week, I must make sure to go to all of them next week, even if I feel the same or worse. I must not do anything "fun" if I don't have all the "not fun" stuff finished, even if that means I will never have the time or energy for the "fun" stuff.

Since the winter of my junior year of high school, when I began this new life where my energy is so limited and I must live so carefully, I have been afraid. I've been so afraid of becoming that useless person, the one who just never musters up the willpower to get anything done, who always falls back on their physical failings as an excuse for checking out of life. This fear has clawed at me, ruled me, always dictated with precise care the doings of my day-to-day. It has made me feel enormous guilt when I fail to follow through on something I have assigned myself to do. It has made me hard on myself.

It has made me feel undeserving.

That summer afternoon as I lay sleeplessly on my couch, new thoughts came crowding in my mind.

What if it is okay to rest?

What if it is okay to take it easy when I need to?

What if it is okay to care for myself, regardless of what I have or haven’t done today?

What if it’s okay to cherish my body, even if it means letting go of some of the expectations I have for myself?

What if I deserve these things, not because of something I have accomplished or as a result of how clean my house is, but simply because I am a precious soul? What if we are all precious, not because of what we have done, but simply because of who we are?

What if we are all deserving of love? Of rest? Of joy?

.   .   .   .   .

In the months that have passed since that summer afternoon, I have felt my thinking gently shift. That voice—the one that harps so much on deserving, and tries to tell me that I do not deserve to rest—is still there; I suspect it always will be, somewhere deep inside my heart. And, all too often, I find myself listening to that voice, giving it leave to shape my thoughts and feelings about myself.

But I like to think that I’m making progress. I like to think that, in the last three months, there have been a few more times where I gave myself a little grace, a few more times where I reached out for peace and happiness in my life regardless of what I had or had not accomplished. I like to think that I’m a little closer to being able to claim these things for my own, to let go of what I can’t do and live abundantly with what I can.

Because you know what?

I deserve it.

Making the Choice

Early this spring, during my morning of chores and yoga, I watched a documentary about a young woman with cystic fibrosis—the same disease that I have, although hers was much more advanced—preparing for a lung transplant. It was a tough film to watch, but ultimately uplifting. And, for that day at least, it changed the way I thought. An hour or two after the film had finished, I grabbed my keys and headed out to my car to run an errand. As I slid behind the wheel, my mind still on that morning’s documentary, I thought: I’m so grateful that I don’t have to maneuver an oxygen tank; it’s so nice to be able to move freely, without worrying about tubing and concentrators.

Immediately on the heels of that thought came another, much less happy one. But I don’t want to have to be grateful for that, I heard myself saying. I may not be on oxygen, but I still can’t walk very far without getting tired. I still can’t live a normal life, or do normal things. It’s still not fair.

And in that moment, before enough time had passed for me to so much as put my key into the car’s ignition, I had an instant of crystal clarity. This is my choice, I thought. I can choose to be grateful, or I can choose to still want more.

.   .   .   .   .

For several years, I have struggled with the unfulfilled desire for motherhood. I have always been that girl—the one who loved babies and children, the one who used to imagine a family of six or eight or ten, the one who considered twins an exciting challenge. It was hard for me, as a teenager, to realize that my disease and the fragility of my body would make both pregnancy and motherhood difficult; it has been even harder, as an adult, to wait through years of poor health, delays, setbacks, and infertility for the child I longed for so desperately. All around me, my friends conceived and mothered with ease and grace, while I was left childless and wanting.

Again and again, as the frustration and the anger and the pain drove me to what I felt like was the absolute limit of my endurance, I came back to the same truth.

This is my life, and I cannot change it.

I can only choose whether I’ll be happy, or unhappy.

.   .   .   .   .

 Years ago in mid-October, I was admitted to the hospital through the emergency room, after several days of chest pain that had ultimately grown so severe that I couldn’t even sleep. I felt like my nightmares had come true—I had to pull out of classes mid-semester, had to watch my life be completely disrupted by the unexpected turn of events.

For the two weeks that I spent in the hospital that autumn, I found myself feeling an anger I had rarely felt before. It isn’t fair, I thought over and over again. It isn’t fair that this had to happen. It isn’t fair that my life has to be different. It isn’t fair that my future is clouded with uncertainty, and I have trouble seeing past my thirties. None of this is fair.

And yet, when those weeks had ended and I was left trying to pick up the pieces of my life once again, I felt truth sinking into my heart. Fair or not, this was my life, and it was out of my control. The only thing I could control was the state of my heart: would I continue to fight the things I could not change, or would I choose to be happy anyway?

.   .   .   .   .

Late this summer, I watched with disbelief as two pink lines appeared on the pregnancy test on my bathroom counter. After such a long time of waiting, it didn’t seem real; for weeks, I felt like I was on a roller-coaster of joy and hope and fear and disbelief. And, to my surprise, dissatisfaction. Here was my dream come true, the thing that I had wanted for so many years—and yet, somehow, I couldn’t let go of my feelings of jealousy and frustration. I found myself clinging to the idea of what I had originally wanted, wishing that this blessing had come into my life years earlier. I couldn’t stop looking with envy at my friends, their homes already filling with children, so much further along this path that I was only beginning to walk.

Last month, I walked along the North Carolina coastline, trying to reconcile my unexpected feelings of frustration with the incredible joy that this pregnancy had brought into my life. And, as the warm East coast waves lapped at my feet, I came again to the understanding that I have come to so many times before:

It’s my choice. I can allow myself to be consumed in anger and pain and jealousy, dwelling on the things in my life that have not gone as I wanted.

Or, I can choose happiness. I can choose to go where life takes me; to be content with the ups and downs, with the life that I have, rather than the life that I might have wanted.

.   .   .   .   .

This choice—the choice between being happy and being unhappy—seems to confront me at all angles of my life, in good times and in bad. And every time it does, I am struck all over again by the power of this simple truth that so many wise men and women throughout the ages have known:

Ultimately, my happiness is all up to me.

How will I choose today?

My Story: Epilogue

My mother came to visit me in early spring, nearly two years after I was married, just a few months before I finished my last college classes. In the previous four years, I had only scraped by three years’ worth of credits. I knew that the end of my classes would not bring a walk across the stage or a diploma to hang on the wall for me. But I also knew, deep in my heart, that it was the right time. It was time for me to be done with school for the present; to focus my energy on taking care of myself and keeping things running smoothly at home. I had learned that it was possible for me to go to school part-time—but when I did, I found I couldn’t do anything else. Keeping one or two classes each semester was a grueling effort for me, demanding all of my time, attention, and energy, and leaving absolutely nothing left of me when I was finished.

It had been a difficult decision to make, but the raw grief that I had felt two years before, when I first realized that graduation might not be in the cards for me, had mostly dissipated. I was tired now, worn down by the endless barrage of health problems and the pressure to keep up with what should have been a light load. I was ready to be done, ready to have the energy to explore other parts of myself again.

That week, as my mother and I sat together at my kitchen table, she asked me if I felt like I had had a “good college experience.”

The question took me by surprise. I had certainly not had a typical college experience; after my first few semesters, I’d had to pull more and more away from the rigor of the academic environment I loved. By necessity, I’d had to learn to find my own identity in something other than the world of scholarship. I’d spent the past two years discovering how much there was to love in my newfound role as a homemaker; I’d learned to take satisfaction in keeping a house of order, and to approach a new recipe with the same zeal I’d previously felt for literary criticism.

I sat at the table, the silver afternoon light of late March diffusing through the windows, and thought about it.

“Yes,” I said finally. “I have.”

Then I added that focus of the last two years had certainly not been a quintessential college experience, but that they had still been good. Very good, in fact.

“I feel… fulfilled,” I said, realizing as I said it that it was true.

Somehow, in the slow passing of days and weeks and years, fulfillment had crept into my heart. I realized, sitting there at the kitchen table, that I was content—that even though the path my life had taken was so different than the one I had expected, I was still happy. My days felt full of beauty; I had learned that even something as simple as loading the dishwasher could feel meditative, fulfilling, if I only opened my eyes.

So yes, I thought. Typical or not, my college experience has been a good one.

.   .   .   .   .

It’s been more than two years since that conversation with my mom. Like everyone, my life is filled with ups and downs, and I still have far too many moments of doubt and insecurity. And yet, the contentment remains. The fulfillment remains. I have come to love this life I’m living, even if it’s not the one I had planned for myself. It’s a continual process, a journey of discovery and delight.

And when I look back on it, even with all the bumps, I can’t deny:

I’m glad to have had the ride.

My Story: Purpose

For most people, mid-life crises strike in middle age, when paunches are appearing and more hairs are grey than not. For me, the period of searching I began to jokingly refer to as my “quarter-life crisis” came calling a few years ago in early spring, a few months before I turned 21. Eight months after I got married, it was becoming clear that a bachelor’s degree was not going to be in my immediate future. My class schedule had been pared down until hardly anything remained; I spent my days going to class and doing homework for a degree that was realistically impossible at that particular moment in my life.

I felt adrift, confused, unsure of what my purpose in life was or what my next step should be. If not a college graduate, then what? My health wasn’t stable enough for even a part-time job. I desperately wanted children, but my husband and I had agreed to wait until my health was a little more manageable. Coupled with the fact that I knew that my cystic fibrosis was nearly a guarantee of a future infertility struggle, it seemed clear that motherhood was not something that would come to me easily or soon.

As the trees began to unfurl their first delicate green buds, I wrestled over and over with the feeling of being lost, purposeless, meaningless. Could there be value in a life so small, I wondered? Could there be a value in a life that was, more often than not, lived from the couch? Could there be value in a life that lacked all of the markers our society uses to define success—a degree, a job, children?

A few weeks after my soul-searching began, I reflected in a rather macabre moment that really, my “quarter-life crisis” might be considered a true “mid-life crisis,” if you consider a mid-life crisis to be the anxiety that strikes when you’ve lived half the years you can be expected to live. Currently, the average life expectancy for a cystic fibrosis patient is in the late thirties. Years later, I learned that plenty of CF patients in their early twenties experience a similar mid-life crisis.

Weeks passed. The snow in my mountain-locked home melted, leaving the earth saturated with mud and the constant sound of dripping in my ears. And still I felt empty, longing for a purpose. I had always been driven; I’d gone after the things I’d wanted with energy and zeal, and I usually got them. I had always had a purpose. I had been a daughter, a writer, a big sister and surrogate mother, a violinist, a student. I had had all number of big dreams, from publishing a book to living in Hawaii to teaching at a dance studio.

I felt, now, as though everything was being peeled away from me. I was left with only the barest of essentials, the simplest of responsibilities. The scope of my life was narrowing. I thought about these things constantly, talking them over with my husband, writing about them in my journal and on my blog, praying desperately for a purpose for my life.

And slowly, over a period of weeks, I began to find what I was looking for.

As days passed and I continued my relentless questioning, a word came into my mind again and again. Homemaker. It was not a term I had spent much time thinking about before; in the brief moments that I had, I had considered it a rather outdated phrase, one that pigeonholed a woman into a narrow frame of reference and failed to recognize her vibrant, dynamic nature.

But the word stayed. Homemaker. And as I pondered it, I had a revelation.

All my life, I had thought of "homemaker" as synonymous with "mother." After all, "homemaker" is the official term for a stay-at-home mother. When applying to college, I’d spent a lot of time checking boxes to indicate that my mom was a "homemaker." "Homemaker" was, in my opinion, the label that the corporate world had come up with to make a life of diaper changes and laundry baskets something you can put on an official document.

But as I thought about it, I realized something sensational: "homemaker" was not, in fact, the same thing as "mother." Although many mothers are homemakers, a homemaker does not have to be a mother.

I thought about the phrase: a simple compound word, really. Home-maker. One who creates a home. A woman who devotes herself to making her home a haven, a place of safety, comfort, and peace—for herself, her husband, and anyone who enters.

In that seemingly innocuous word, I found the sense of purpose I had been so desperately seeking. There were many things that I couldn’t—and still can’t—do. A year after that mid-life crisis, I officially withdrew from college. Three years since that spring of searching, I still don’t have a degree, or a job, or a child.

But I have been a homemaker. In every place that we have lived, I have worked hard to create a place of joy and love for my husband and myself. I have welcomed friends into our home for comfort, and companionship, and lots of late nights of games and laughter. I’ve discovered a passion for creating good, healthy food for my family.

I have made a home.

That moment of realization—the light-bulb instant where I realized just how much purpose could be found in such a neglected phrase—did not solve all my problems. I still had moments of guilt, and despair, and long nights where I felt worthless and obsolete. I still do.

But what that chilly spring so many years ago did do was answer one question that had haunted me for a long time before. Can there be value in a life so small?

Because what I have learned is that the answer is yes. There is always value. Even in the days where I feel most helpless—even in the days where I can hardly get off the couch—there is value. I am the maker of our home, an integral part in this family of two that my husband and I have created.

I have purpose.

In this space, Cindy Baldwin will share her evolution---the ways she has come to accept the circumstances of her life with cystic fibrosis and find great contentment within them. You can read the beginning of her story here and here. 

My Story: One of "Those" People

Things were better by the time I graduated from high school. I still had to balance my schedule carefully, and I was still confined to a wheelchair when I went shopping—but I had made great strides from the year before. I could walk up the stairs in my parents’ house without pain. College would be difficult for me, I knew, but I was confident that I could handle it. With care and caution, I knew I could put together a schedule that wasn’t too much for me. At least, I thought, I wouldn’t have to be one of “those people” whose health problems were serious enough to prevent them from higher education.

I packed my bags and drove across the country with my family. I was moving from big-town North Carolina to small-town Idaho; as the trees fell away to plains outside my car window, I could feel the homesickness growing.

My first year of college went smoothly. I took as light a schedule as I could while still being a full-time student. I missed so much class that I had to have a special letter from the office of disabilities giving me extra sick time, but I still managed to make it through my first two semesters with a near-perfect GPA and a journal filled with memories.

Not long after I began my third semester, my health started to decline again. I battled lung infection after lung infection, and my fatigue seemed worse every day. The previous summer, ballroom dancing had become my passion, and I’d spent hours each week dancing. Within a few weeks of the start of the new semester, I had to drop both of my dance classes. I was too out of breath to dance like I had just months before, and the exercise left me exhausted.

Still, I tried hard to live a normal life. I kept up with my classwork, stayed on top of my healthcare regimen so that I could take advantage of the energy I did have, and got a boyfriend. As fall passed into winter—always an early occurrence in southeast Idaho—things between the two of us began to get more serious. By the time I left for Christmas, Mahon had told me that he would like to marry me. By the end of January, we were engaged.

That spring, an outbreak of a particularly nasty strain of the flu went around my hometown. For nearly a month, I stayed in isolation and didn’t see any of my friends, for fear that I’d catch it. Ironically enough, weeks after everyone else had gotten better, I started showing symptoms. I ran a high fever for several weeks, losing fifteen pounds and developing a serious lung infection. I’d already been in the hospital once that year—a fairly routine annual event—but as the first flowers began to bloom in North Carolina, I found myself a hospital patient once more.

It quickly became clear that I wouldn’t be able to travel back to Idaho in the coming weeks, as I’d planned. My recovery was slow; I lay in bed for several weeks, unable to do much more than read light books and try to gain back all the weight I’d lost. Instead of catching a plane to Idaho to spend time with my fiancé—who was still in school—and plan a wedding, I was faced with the necessity of taking a medical deferment from the summer semester that I was supposed to be attending.

Suddenly, I had become one of “those people.” Frightening possibilities crowded through my mind, marching one after another like ants at a picnic. Would I be able to go back to school in the fall? Would I be able to finish school at all? Would I have to withdraw from school to take care of my health? I had always been driven, ambitious; I had spent my life looking forward to my undergraduate education, and I had loved the year and a half of school I had already completed. Each time I thought of the possibility that I might have to eventually withdraw, I felt sick to the pit of my stomach. I spent long afternoons that summer crying, mourning the dreams that I felt were slipping through my fingers.

By the time I got married late in August, I had had three hospital stays in the last six months. I found myself wondering if I would ever manage to crawl back from where I was now; was this the beginning of a decline I’d never be able to pull out of?

I did go back to school that autumn. Within the first two weeks, it was clear that the full-time schedule I had signed up for would be too much for me. I dropped one class, and then another, until I had pared my course load down to only two or three classes. Even then, I found myself missing class often, easily drained by the effort of keeping up with homework while adjusting to married life and a household of my own.

But always, the fear haunted me. I felt hounded by guilt—at taking such a light courseload, at all the times I felt I’d failed as a wife when I had to ask my husband to take care of me yet again, at the nagging feeling that maybe I should be pushing myself harder, be one of the people in inspirational commercials who accomplishes great things despite their setbacks. I was daunted by the prospect: Most days, I considered getting through my classes and getting dinner on the table to be a Herculean effort.

The fear, and the guilt, stayed with me, an insidious voice always present in the back of my mind.

It would be years before I learned how to silence that voice.

In this space, Cindy Baldwin will share her evolution---the ways she has come to accept the circumstances of her life with cystic fibrosis and find great contentment within them. You can read the beginning of her story here and here. 

My Story: Poetry and Prose

My parents are my heroes. I was their first child, born when they were 21 and 23, respectively. They were young, hopeful, and excited to become parents.

For the first four months, everything was normal. After that, things went downhill quickly. A bad reaction to an antibiotic sent my infant self into a quick spiral of electrolyte loss and malabsorption, until my tiny body was so taxed by constant vomiting and dangerously low potassium levels that my parents were told I was near death.

When I turned twenty-one—the age my mother was as she experienced all of this—I marveled. I could not imagine the pain that the two of them went through, welcoming their beloved first child into the world only to be told months later that the end was likely.

Finally, at six months, the doctor thought to test me for cystic fibrosis, a genetic disease that causes a buildup of sticky mucus throughout the body—and also, incidentally, leads to very quick electrolyte loss. The diagnostic test came back positive.

My early memories of cystic fibrosis are a jumble of doctor’s appointments, strange machines, and leaning upside-down on a pile of pillows as one of my parents percussed my chest to help keep my lungs clear. There are other things that swim through my remembering as well, like the time my babysitter told me that if a necklace clasp worked its way around to the charm in front, it meant you could make a wish.

Crystal-clear in my memory is one sunny Sunday afternoon as I left church with my favorite necklace around my neck. The clasp nestled against the heart-shaped pendant. With childish fingers, I reached to pull it back, remembering as I did so the babysitter’s words.

That’s easy, I thought. I wish my CF would go away.

Still, my childhood was by and large a happy and very normal one, defined far more by the monsters that lived in my basement and my favorite park two blocks away than by my disease. I breathed easily, and could not remember those early days of endless hospitalizations. It wasn’t until high school hit—and with it, sleep loss—that the hospital became a part of my life again. Each winter, I would be admitted for a few days to begin a course of intravenous antibiotics. I would finish out the weeks-long course at home, needing a month or more after I’d finished the round to recuperate from the harsh effects of the strong medications.

And then, early in my junior year, everything changed.

High school had been a hit to my immune system, and I’d grown used to spending the winters fighting off one cold after another. At first, the virus I picked up around Thanksgiving of my junior year seemed like all the others: I was tired, my throat was sore, I had a cough, I was spending most of my time in bed.

But unlike all the other things that had come my way, this didn’t go away. Months stretched on. I was exhausted all the time, living in a half-awake world where even reading a novel was sometimes too much for my brain to process. Weeks would pass in which I never really left the house. I rotated from bed to couch to my parents’ back porch, where I would stretch out across two chairs and watch the squirrels jump from tree to tree in the backyard. I canceled plans with friends again and again. Even a twenty-minute phone call was enough exertion to leave me so drained that all I could do was crawl into bed, desperate for sleep.

Every few weeks, my mom drove me to the pediatrician for more tests. Nothing came back positive, and still my symptoms did not change. I began to have pain in my legs and feet; over time, the pain got so bad that I could hardly walk. I spent my days confined to places where I could have my feet propped up, my legs stretched out, to give my aching muscles a little relief. I left church early each week, roaming the building to find an unused room where I could lay down on the floor. The simple effort of sitting up had become exhausting.

Eventually, a diagnosis came. Ten months after that first sore throat, my doctor tested me for Epstein-Barr, the virus that causes mono. It came back positive. Another doctor explained that because of my weakened immune system, I hadn’t been able to shake off mono like most teenagers do; not only would it take longer for my body to fight off the virus, but I would be susceptible to relapses in times of stress for the rest of my life. He also said that I had developed Fibromyalgia, a muslce pain syndrome, as a complication of the mono.

I hardly recognized my own life anymore. Gone was the vibrant, energetic teenager; in her place was a girl I didn’t know, a quiet girl who found long conversations tiring and needed as much sleep as a newborn. I raged against this change, raged against the loss of the life that I had loved.

But slowly, so slowly, I learned to find the beauty.

Nearly a year after my diagnosis, I sat at my desk with my computer slung across my lap and felt bathed in light and loveliness in a way I had never quite experienced before. That afternoon, filled with a peace I had not felt in so long, I wrote these words:

There is a state, somewhere between consciousness and unconsciousness, prose and poetry, that is entirely unique.

Colors seem brighter; sounds are sharper and clearer but, at the same time, gentler on the ears. Every movement you make—lifting a hand to brush at loose hair, blinking, turning to look beside you—feels lyrical, like ballet. You don't speak: there is no need for words. You simply are.

This, then, is one of the gifts that sickness has given me. This, the talent that some people are intrinsically born with, but I never was: the ability to slow down, to take things as they are, without preconceptions or misperceptions to cloud my vision. The ability to stop for a moment, and see loveliness in ordinary things: a mess on a table, a bag comfortably stuffed with contents, a plastic craft bead. The ability to recognize the extraordinary in the ordinary, and understand the beauty of peace.

I have always been a writer. I would venture to guess that I probably spun stories and wove words in the womb; I certainly have for all the years afterwards. But, I think, as I silently uncurl my legs and shift my position on the chair, that it is sickness that has made me a poet.

Prologue

I have always loved butterflies. Something about the way they seem to hang on drafts of air, featherlight, the iridescent greens and yellows and blues of their wings catching the rays of the sun, catches at my heart. A butterfly flitting across my path or alighting on something nearby is a reminder to me to stop, to breathe deep, to live. To embrace joy, and be the deepest version of myself. One summer when I was straddling the line between childhood and adulthood, my Carolina hometown was overrun with tiny green and white butterflies. They fluttered everywhere, gems against the rich blue of the August sky. They were so abundant that it was hard, driving down the freeway, to avoid catching one on your windshield now and then.

“I hate to see them dashed against the glass,” I told my mother one afternoon as I swerved to miss a small white shape. “It makes me feel sick.”

“Don’t feel too bad,” she answered. “They only live for two weeks, anyway.”

That conversation has stayed with me. I think about it, sometimes, as I watch a butterfly pass me, or delicately fan its wings as it sips from a flower. In a human lifespan, two weeks is infinitesimal, hardly a blink on the landscape of a decades-long existence. It is so short as to almost be meaningless, lost in the longer lives of larger creatures.

And yet in its small life, the butterfly brings such beauty.

This is a principle I try to remember.

At six months old, I was diagnosed with cystic fibrosis, a life-shortening genetic illness that affects many organs in the body, causing frequent and serious lung infections, sinus infections, malabsorption, and a host of other issues. Halfway through high school, I battled a year-long case of mono that left me with Chronic Fatigue Syndrome and Fibromyalgia. My life is one that is lived in and out of doctor’s offices and hospitals; I have both my nurse and my pharmacist on speed dial. I spend hours each day doing treatments and therapies to help keep my lungs clear of infection. Each morning, I swallow more pills than my 82-year-old grandmother with Leukemia. Each day is a delicate balancing act, a struggle to accomplish what I need to without overusing the limited reserves of energy that I possess.

I am breathless on a daily basis. But, as a friend once reminded me, “breathless” is also the word that we so often use to describe moments where we are awed by beauty, or bathed in heart-stopping joy.

And this life of mine is both of these things. The days of frustration, of feeling overwhelmed and betrayed by my own body, are balanced with moments of deep, pure delight. I have learned to find the beauty in a small life, as well as a grand one. I have learned to break new ground, to blaze new trails when the old ones become impassable. I have learned to savor the moments that come my way.

I have learned that sometimes, the only requirement for happiness is a single choice.

This is my story. In this space, I hope to share my own evolution, the ways I have come to accept the circumstances of my life and find great contentment within them.

Because what I continually come back to is this: In my reckoning, two weeks is nowhere near enough time for anything to be accomplished or gain meaning.

And yet, each time I see a butterfly, I am reminded of just how precious each life—no matter how small—can be.