Andrew and I were holding hands, and had just stepped onto the sidewalk. He was mid-sentence about some Harry Potter factoid, when my foot unexpectedly crashed through what had looked like solid snow-pack. For a sickening instant, I felt my clog-shod foot skitter for firm purchase on the ice lurking beneath the snow. And then, in a more sickening instant, something popped like a firecracker, pain exploded through my leg, and I fell suddenly. I nearly dragged Andrew down with me, but I let go in time to sprawl face-first on the slushy, sodden ground.

“That’s what you get for trying to out-parent me at the art drop-off,” my husband, Jay, said, when I called him to tell him the news. He was trying to cheer me up, to de-escalate the panic that was rising in my throat. “I usually just kick the boy out at the curb. It’s better for your health,” he said.

By the time he made it home—less than an hour later—my ankle had ballooned and I couldn’t put any weight on it. I had propped my leg up in bed, and when I pulled back the bed-spread, with a Chronic Town-style magic trick flourish, Jay abandoned levity and just said “Crap” about 45 times.

Crap indeed. Jay and I have been down this road—or flat on my face in this road—twice before. This wasn’t a mere sprained ankle, and we both knew it. The sarcoidosis that has infiltrated nearly every organ in my body has also wreaked havoc on my joints. Some of you might remember my posts in 2008 and 2009 when I twice ruptured my right-ankle ligament, or when I spent months in a cast, zipping around my house on a scooter, because the sarcoidosis eroded my foot bones and I couldn’t put any weight on the fractures in my foot. Ah, happy memories.

Maybe my auto-immune disease decided to shake it up this time. Here we’d accustomed ourselves to my right foot and ankle collapsing—and have at least three expensive right-footed orthopedic boots in the garage to prove it—and now I’ve gone and screwed up my left foot.

At least I’ve learned ankle management skills in the past couple of years. Rather than inflict a night at the emergency room on myself and Jay, I opted to swaddle the swollen ankle in ice packs, down as many pain killers as I had, and wait to see my own doctor in the morning. He ordered x-rays to make sure I hadn’t broken the joint, and then checked me out immediately after. He confirmed that the ligament in my left ankle had ruptured, and that I need to stay off it as much as possible, see a specialist once the swelling has decreased, and ice it a lot. And he sent me home with this stylish, 2012 model of the orthopedic boot.

I keep careering between bouts of solid self-pity and moments of clarity, when I remind myself that compared to some of the other health challenges I’ve faced in the past few years—ranging from potentially fatal heart rhythms to surgeries to periods of total blindness—a busted ankle isn’t that bad. Plus, I know I can get through this. This is an irritant not a catastrophe, I tell myself. Which is true. But it’s equally true that my leg hurts quite a lot, that I am bed-bound after surviving another round of chemo last week, and that irritants are, well, irritating. The toughest part of hacking it in Chronic Town, as anyone with a chronic illness can tell you, is keeping your head above the tsunami of irritants that illness brings.

That’s the extent of my profundity for the evening.

I’ve had an especially hard time bouncing back from my monthly dose of chemo that I got on Friday. Every month the nausea and vomiting are a little worse, my fever is higher, the fatigue is deeper, the mouths sores are more painful…oh good grief, you get the idea.

I spent almost every minute between Friday’s infusion and Monday afternoon in a coma-like sleep or in the bathroom getting acquainted with the toilet from interesting new angles. On Monday afternoon I was scheduled to lead the second after school creative writing club at my son’s elementary school.

I desperately did not want to leave my bed on Monday. I dragged myself up around noon and scrabbled around to think up fun creative writing prompts that would captivate a group of 10 students, ranging from second to fifth grade. I took a very long shower, dressed in clean clothes, and even applied make-up so that I wouldn’t frighten the dear little ones. The only problem was that cleaning myself up drained the dregs of my energy.

So I swung by Starbucks on my way to the school and ordered a quad latte. It seemed like a good idea. 4 shots of espresso would surely jolt me into creative action. Unfortunately, they also jolted loose a spiteful genie in my stomach. I pulled over a few blocks from the school to discretely hurl up that good idea. Luckily, I lug around a purse the size of Kansas, so I could clean off my face (and all that nice make-up) with a wet-wipe left over from Andrew’s toddler days, and freshen my breath with a stick of gum the consistency of bricks.

The kids filed in after the last bell rang. I doled out string cheese and granola bars. They looked pretty tired too after a full day of school. I decided that even though it sounded like a good idea to me, group napping likely wasn’t why they signed up for this fledgling creative writing club. It was time to get moving and inspire young minds. I was nervous. This was my second week with these kids, and I know several of them from helping out with reading group during the school day. But the post-chemo hangover sapped my confidence. Think of teaching creative writing—or anything else you love, but that is also challenging— when you’ve got a nasty flu.

I’ve taught creative writing to adults before, and I loved every minute of it. Working with kids is an entirely different ballgame, though. My adult students were usually cautious. They were recovering from an educational system that minimizes creativity and maximizes rules. I’m all for grammatical rules, and I value a 5-part essay as much as anyone else. Yet, there also has to be a time to break those rules—to let ideas flow, for the heart to lead and the mind follow, for writing to be fun. It took my adult students a few classes to let go of their anxiety and to trust that they had something to say.

The kids in the creative writing club are young enough that they haven’t been straitjacketed by school English classes. They love writing, and they love reading out loud to the group what they just wrote. They moan when our hour is up and wheedle me to come in twice a week, instead of once. They call out answers to the questions I ask. They write wonderful, whacky, inventive, insightful, poetic little pieces in our group. They bring in poems, excerpts from novels (yes, you read that right, novels), and stories. One kid started a school newspaper on his own. These kids are so amazing. They are brimming with stories—their own and ones they invent. They have voices, and they want to use them.

When the hour was up yesterday, I was drenched with sweat and was dizzy. Plus, the genie in my stomach was back in action. But I also felt like every cell in my being was singing. “You did good, Mama,” my 8-year old son, Andrew said, as we walked out to the car together. (He’s in the club, too). “Everyone had fun writing today.”

I wish that the energy and wonder of creativity had lifted me permanently out of post-chemo sickness. It didn’t. By the time we made it home, I couldn’t stay standing for another minute. I fell into bed, and stayed there until morning. I’m still feeling sick today. In fact, I had to call the doctor a few minutes ago because my fever is disturbingly high, and my stomach is a mess. He told me that it’s just after-effects of the chemo and that I need to rest.

I’m glad that I pushed myself yesterday to share creative sparks with the writing club kids. I brought what energy and spirit I could to them, and they sparkled and popped like fireworks around me. They reminded me of what it’s like to feel your writing. They carried me through that hour—and this tough day.

What are your experiences of finding inspiration when you least expected it?

Neither of these was motivating me yesterday. I was barely recovered from a bout of stomach flu. My 8-year old son, Andrew, was sick—with something that sounded a lot like tuberculosis— at home, missing his fourth consecutive day of school. And, I was on deadline. After calling for two complete rewrites of a newsy article I pitched nearly a year ago–and then falling silent for months– the magazine editor suddenly wanted a third complete rewrite. In a day. (Since I used up my quote of bad words describing my love of by-lines, I’ll contain my thoughts about this editor).

It’s a testament to how much better my overall health has been—in spite of the recent joint and neurological problems—that I was able to turn it around. It’s not the best piece of writing I’ve ever done. But I did it.

I felt curiously empty about finishing an article for a national magazine—maybe because I’d been thinking about it for so long, or because I didn’t have time to fret over the last draft. I emailed the thing off and crawled back into bed.

As I was heading into my bedroom, Andrew asked if he could use the computer. I figured he was looking to score extra of his usually carefully rationed screen time to play on Lego.com or watch a Shaun the Sheep by streaming Netflix. I was too tired to wrangle over the exact number of screen time minutes he should get on a sick day. “Just don’t overdo,” I said, as I pulled the blankets up to my chin.

“You have no idea what I have planned,” he said.

That almost got me out of bed.

But I dozed, only half-hearing the printer wheezing in the next room. He’s been known to print out so many images from Lego.com that he’ll deplete our color ink cartridges in one sitting. So, when he came into my room a little later bearing a sheet of paper, I figured it was to show me the latest Lego Ninjago set.

“I am so proud of you,” he said, handing me the paper. “You got that article written in, like half an hour.”

I looked down to a brightly colored card he’d made on a computer graphics program he’s teaching himself. The writing was a little shaky, since he was is just getting the hang of free-drawing and writing with the mouse. He translated. “Congratulations. You finished the article.” Spelled his way, is read, “Congradootions you finsht the artacel.” He’d decorated the card with hand-drawn stars and a thumbs-up, and pasted in clip art of an orange tabby and flowers.

See for yourself.

It is, hands-down, the best reward for my writing I’ve ever received. Better than any paltry check or prestigious by-line. Getting the respect of an 8-year old boy is way cooler than any of that.

What’s the best reward you’ve earned for a challenging work project?

This will be my 260th post. Coincidentally, I’ve got a rockin’ and roilin’ stomach flu. Rather than vanish from the face of this blog, I’ve decided to use this opportunity to resurrect some old favorites and launch a new series. I think there’s good stuff in my archives, worthy of a second read. From time to time, I’ll add another installment to the Classics.

Let’s start this series with a bang and go back–way back–to May 24, 2006. The piece is a tad snarky edgy. I think anyone with a chronic illness will know why. Sometimes healthy folks just say the wrong things about your sickness. They usually mean well, but it can be hurtful and infuriating. For example, I got a Twitter message from someone who’d stumbled across my profile, in which I refer to my life with a chronic illness. “It’s just a temporary setback,” she wrote to me (and the rest of the world). She was probably intending to be optimistic and positive. But I got this tweet on a day of intense pain, several blind spells, and vertigo. This message from a total stranger didn’t cheer me up. It made me mad. “Would she write to someone with cancer that it’s just a temporary setback?” I fumed to myself. I took a few deep breaths, and let it (mostly) go. But I remembered that I wrote about this before, and thought perhaps this old rant might be helpful for good-intentioned acquaintances of those of us stuck in Chronic Town or that it might resonate with other folks with chronic illnesses. But while we’re speaking of intentions, please know that mine were good in writing this piece. I’ve grown up a lot since I wrote this. I don’t think I would write it today. I’m more accepting of limitations–others’ and my own. Still, if there’s any place to express anger at the hurt people heap on you–on top of sickness and pain–it’s your own blog, right?

I have a question for you today after you read the original essay below. Have you ever said the wrong thing to someone in Chronic Town? Or not said anything at all? How did you figure out that you fell short? (And, for the record, being in Chronic Town doesn’t disqualify you from this. Even after getting sarcoidosis, I have said idiotic things to sick people.)

“You Don’t Look Sick”
May 24, 2006

As anyone who has ever suffered from a chronic illness knows all too well, there’s only one thing that comes close to being as annoying and draining as the disease itself: idiots responding to your disease. Perhaps idiot is too strong a word, because, really, these people aren’t stupid – they’re just insensitive, clueless, and afraid. But I like using idiot; it has solidity and verve to it.

I’ve only had sarcoidosis for two years. When I hear about folks who have suffered with this illness for fifteen or more years, I wonder how they have managed to interact with the world without losing their minds or resorting to assault rifles.

Before I continue this rant, let me be explicit that I have many wonderful people in my life who are not idiots about my illness. Every single member of my family is incredibly compassionate and nonjudgmental. I have friends who want to understand how my life has changed and how they can help make things easier, and I was lucky enough to get diagnosed with sarcoidosis right away. I know several people with chronic illnesses who had to endure insufferable doctors insinuating they were hypochondriacs or malingerers before finally getting the diagnosis and treatment they required. Although I complain about certain doctors in my life, I have been exceptionally fortunate in finding (and being able to more or less afford) specialists who know as much as there is to know about sarcoidosis – which is not a whole lot.

I am also aware that when people are idiots about illness, they are not responding from the compassionate part of their brains. Hearing about or seeing someone who is sick – and worse dying – activates some reptilian piece of our consciousness that is consumed with self-preservation and fear. I know that insensitive comments are really about the idiots’ fear of death and illness, not about me. I’m sure we have a primal survival mechanism that propels us away from sickness, even when we rationally comprehend that sarcoidosis or cancer is not contagious. But we also have the capacity to move beyond our lizard brains and act like humans. We can overcome the fear – but sometimes we seem to choose not to. There’s where my thoughts of assault rifles enter the picture.

But I suppose that might be a little drastic. So, in case you are an idiot who has happened onto my blog, or if you are unfortunate enough to have a chronic illness and also have idiots in your life, I have prepared an easy-to-follow guide of how not to respond to someone who is chronically ill.

1.) Never, ever tell a chronically ill person, “You don’t look sick.” Saying this is totally invalidating and minimizes the illness. I have a friend with cancer who has been undergoing various chemotherapy combinations for over a year. I met her for lunch recently, and if I had just glanced at her, I would have thought she looked fine because she was dressed nicely and was wearing a wig. The reality, though, is that she has lost a significant amount of weight and all of her hair. Her mouth is full of sores that are so painful she can’t eat solid foods. She is constantly sick with secondary infections; any spare time she has, she devotes to napping.

Now, let’s pretend that you’re an idiot who says to my friend, “You don’t look sick.” Whether or not you intended to, you are implying that she’s not really ill. This puts my friend in the odd position of either defending her health status and insisting she’s sick (and then feeling really weird about it) or walking away choked with rage. If you’re trying to pay a compliment and want to help someone focus on positive things, skip semi-accusing them with, “Well, you don’t look sick,” and try instead “You look amazingly well considering all the health problems you’re having.” See how easy that is?

2.) Never, ever say to a chronically ill person, “You’re still sick?” This oft-repeated phrase also carries the not-so-subtle message that the ill person should be better. No one who spends as much time at doctors as the chronically ill wants to take any of your crap on this. We already devote enough time flogging ourselves for not being well. Being chronically ill means you don’t get better quickly – or at all. People with lupus, MS, or sarcoidosis are sick for years and there is often little in the way of treatment, so don’t act shocked – and even outraged – that someone has the audacity to remain ill for more than a few days. I know that the thought of being ill for a long time is terrifying (welcome to the land of the chronically ill), but you’d better get used to it. Given all the chemicals and crap we’ve pumped into ourselves and our environment, there’s a good chance that you, too, will develop a chronic illness and can enjoy the comments of former idiots like yourself.

3.) Do not make treatment suggestions to a chronically ill person–unless you’re her health care provider. I don’t care who you know who got better taking fish scales, distilling frog urine, or by subsisting on apple peels. I don’t give a hoot about who mysteriously recovered from a dire disease – even if it was you – with acupuncture, antibiotics, or surgery. Unless you are a doctor well-versed in the disease of the person you’re talking to, don’t assume you can offer some quick-fix therapy. It doesn’t make us feel better. We worry about how to get well all the time, so we don’t want or need our friends (idiots though they may be) to pile in. Moreover, the subtext of this treatment “advice” (as with the two above) is that we sick people can fix ourselves, if only we worked hard enough at finding the right cure. Nope. We are not puzzles missing a key piece.

But if, despite the foregoing, you’re still absolutely, positively sure that you have useful information to impart, get permission first. At the very least, ask if your chronically ill friend or acquaintance wants to hear what you have to say. Try prefacing your miraculous cure with, “I know you must get a lot of health advice from people; I have some ideas about things that have worked for me/my mother/my pet pigeon. Would you like to hear them?”

The worst are people who want to proclaim the power of positive thinking and healthy lifestyles. Please don’t assume that someone with cancer or an autoimmune disease is overweight because they are lazy or misinformed. We really don’t need you to tell us that we would feel better if we lost weight. Quite often, though, the chronically ill gain weight because we take medications that bloat us and increase our appetites or because we feel too damn sick to make it to the gym or go for a hike. It’s not always a question of will power. This week, for instance, I worked out five days and followed my weight watchers plan. The result? I stepped on the scale this morning to discover that I’d gained two pounds. I really don’t need an idiot lecture on a day like today.

If you really want to address someone’s weight, diet, or exercise habits, do it in a way that is kind and loving. Put another way, be a friend, not an idiot like, say, the woman I encountered in the grocery store who managed to violate two of my idiot rules at once. “Wow, Rebecca,” she said. “You don’t look sick, but you do look like you’ve gained some weight.” Ouch. My mother did the most amazing job with this a few months ago when I was wearing pants that were too tight for my prednisone-enhanced butt. “You are so beautiful,” she said. “It doesn’t matter how much weight you have gained, you are still beautiful. You have beautiful skin, hair, and eyes. Let’s find you some clothes that enhance that.”

And people that lecture me on positive thinking will be shot. It’s just the most humane alternative. I know that there are people who believe that illness is caused by bad attitude, that somehow our bodies express the sickness festering in our minds. I once listened to a Louise Hay tape, where she soothingly intoned that all I needed to become healthy was to imagine myself healthy. Well-intentioned friends have given me books on point. Nothing makes me angrier than this worldview. If you subscribe to it, keep it to yourself.

In calmer moments, I know that this uncompassionate attitude comes from the reptile brain as well. We are afraid of sickness, so we imagine illness as something within our control. The warped thinking goes like this: “Suzie is dying of lymphoma because she swallowed her anger for years and years; I, on the other hand am psychologically healthy, so I won’t get cancer and I won’t die.” Not only are you being an idiot, you are setting yourself up for a big shock. Guess what? Everybody dies. You too. Blaming the victim, with a mindset every bit as Puritanical as the Plymouth colonists – even if you’ve dressed it up with New Age triteness – isn’t going to keep you well. It will just keep you an idiot.

If you are genuinely concerned about your chronically ill friend’s attitude, don’t inflict pop psychology, judgmental books, or corny tapes. Instead, try acting in ways that might actually improve your friend’s outlook. Chronically ill people feel lousy a lot of the time. It’s depressing and lonely. So rather than pontificating about positive thinking, bring dinner one night. Or take your friend to a mindless movie, babysit her kids, clean her toilet, treat her to a manicure. These generous acts of compassion and care will make someone feel instantly better about themselves, their illness, and the world they inhabit.

4.) Do not ask overly detailed questions about a chronically ill person’s condition and treatment unless you know them well. There is nothing more tiring than having to spend twenty minutes detailing my symptoms and my prognosis to a virtual stranger I’ve stumbled into conversation with at the gym. There is a line between concern and voyeurism. You know where it is, so don’t cross it. I’ve come to realize that the people who want the nitty gritties about my sickness are, once again, acting out of fear. You can see the busy wheels of their minds clicking off symptoms to see if they correspond to any of their own. I know someone with a deadly form of brain cancer; he told me that people perpetually ask him how his disease started. They are more concerned with their own health than his. It’s a natural urge to double check that you don’t have MS or inoperable tumors, but it is tremendously invalidating and selfish.

The bottom line is that chronic illness is a terrible burden – for those who suffer from it and for those who are part of the sick person’s world. It’s hard to be sick, and it’s hard to watch someone you know, like, or love struggle. People act like idiots when they ignore the core of fear at the center of the human condition. We all sicken and die. It’s not fun to contemplate. But rather than avoid this universal bit of pain and blame a sick person in countless flippant ways, admit to your unsteadiness in the face of it all. I wouldn’t think you were an idiot if you told me, “You’re sick and I don’t really know how to respond to you. Can you help me deal with this in a way that is OK for you.”

Just a few days ago, my street was ablaze with light. Nearly every house, except for our curmudgeonly next door neighbor’s, twinkled with holiday lights. Some were sophisticated, with one or two colors threaded along eaves or artfully among winter trees. Others went for more bling. A block away, one family had multi-colored lights flashing in time with Christmas carols that played on a sound system in their yard. Closer to home, our other (much nicer) next door neighbors propped an inflatable and illuminated giant Santa onto their roof.

We aren’t technologically savvy enough to coordinate music and lights in our house. But we do manage to hang some white and blue lights outside and in. Jay’s in charge of the outside ones. This year, he somehow managed to arrange it so that they could be turned on and off with a switch inside our house. That was our miracle. (I love my husband, but he’s not exactly the handiest tool in the box.)

I adore all the lights, from the most basic to the gaudiest. The brilliance of bright lights in the coldest and darkest time of the year, the way the snow collects the lights’ hues, and the intentionality of the light—it all takes my breath away. It is so beautiful. And hopeful.

Then everyone takes them down. It’s time to move on. We drive by our neighbors’ Christmas trees, strewn lop-sized and defeated next to their garbage cans. There is nothing sadder to me than a used-up and discarded Christmas tree. It’s like a visual reminder of time passing, of magic fading, of the calendar grinding and churning along.

I wish we could extend the light and the hope of the holiday season just a little bit longer. I know that if we left them up all year long they would lose their brilliance and become everyday. But I’m asking for just a small reprieve. Could we keep lighting the darkness until the end of January? Martin Luther King Day at least?

I’ve never liked the ending of holidays. Even as a small child I was conscious, in the middle of celebrating my birthday or Christmas or summer vacation, that before I was ready, it would be over. My nostalgia has grown only stronger as I’ve aged—and gotten sick and had a kid. It’s morbid, but once you’ve seriously had to contemplate the end of your life, you recognize that you can’t take for granted that you’ll get another Christmas, another birthday, another season of light. Then, too, Andrew keeps growing and changing more quickly than I can keep up. That’s the way it should be, of course – god forbid he stop. But sometimes I want a pause button—a way to suspend Jay, Andrew, and me in this lovely moment.

Of course there are no pause buttons. Time slithers by, like a serpent on the hunt.

That doesn’t mean we can’t keep shining a little light into the void—at least for a few more days. I am. I’ve only got to flick a switch inside to light the way home.

Have you taken down your holiday lights? Were you sad to pack them away?

Who wrote those nice words?

It couldn’t have been me. I’m about as deeply alive in this day as a clod of frozen dirt.

I slept for sixteen hours last night and awoke feeling as though my body and brain were encased in concrete. Pushing through a few mundane tasks today hasn’t enlivened me. I’m more tired. My hands are swollen by sarcoidosis-induced arthritis. My knee throbs. Worse is the unholy trinity of neurological problems caused by the neurosarcoidosis. A searing headache, vertigo, and periods of vision loss have been bothering me—no, plaguing me—for the past couple of weeks. It has been especially bad the past few days. I can count the hours I’ve been stable enough to get out of bed (when I literally am not falling over from vertigo) on one hand.

I want to feel alive. I want to look out my bedroom window and notice sunshine glinting off the distant mountain peaks. I want to be free of pain and filled with energy. But I am neither.

I never promised you a cheery read on Chronic Town. You aren’t going to find purple sunsets and puppies, much less inspiration, on this blog every day. However, I did promise to tell the truth about what it’s like to live with a wretched and painful illness. Sometimes that truth is sweet and nice. Sometimes when the illness has backed off a millimeter or two, I can see beyond the edge of this minute to hope. Then there are days like this one, when everything hurts, when nothing helps, and I feel alone. This is one of those days. Everyone is Chronic Town has these days. Telling the truth means telling you about these days.

The best thing I can do for myself is crawl back into bed and stop fighting the disease for this day. That is what I am going to do.

How do you get through your not-nice days? How do you deal with physical limitations or a tough time?

I have always loved New Year’s resolutions. More accurately, I have always loved the resolving part of the process. Following through on all my noble goals has proved to be less fun than listing the steps to the perfect me on an open, clean page.

I nearly made a list of dramatic resolutions in my journal this year, too. As the Earth was finishing its path around the sun and the year’s calendar was clicking down to its end, I sat poised with my pen above my page.

Who do I want to be in 2012? How can I make that happen? I want to be thinner and more athletic. I contemplated writing “Lose 100 pounds” to start my list. I want to finish my book. I want to pitch the finished manuscript to as many agents as it takes to land one. I want to be a terrific mother to Andrew. I want to have more energy and exuberance for my relationship with Jay. I want to build a bigger and better community through this blog. I want to connect with more people living with chronic illness. I want to beat sarcoidosis this year. I want to be well. I want to be more attuned to the needs of my friends. I want to get out more—in the community, in Andrew’s school, on hiking trails. I want to be in less pain. I want to be happier. I want to learn how to french braid my hair. I want to be a better daughter and daughter-in-law. I want to read more of the Russian masters.

In the midst of this feeding frenzy of self-improvement—that was quickly giving way to self-denigration—one beautiful, perfect, healing thought rose above the din and demanded to be heard.

STOP.

Indeed.

It would be great if I could drop enough weight to feel healthier. Finishing my book would be wonderful. So would feeling well enough to enact any of the resolutions that rose up within me. But is it a lack of resolve that prevents me from volunteering, exercising or healing? If only a lack of trying was what keeps me from health, wealth, and happiness. Unfortunately, there is that pesky little thing called reality. And my reality prevents me from self-actualizing myself to perfection. It does for all of us.

I didn’t want to leave the page in my journal blank, though. I don’t want to give up trying. I just want to be trying for the right goals.

What would make a “good” year? Will I look back on 2012 with a sense of peace if I’m thinner and more productive, with a kick-ass braid swinging down my back? Will finishing my book—and then selling it—somehow still the swimming sharks within me?

Probably not.

But what would?

Then it hit me. The words poured from my heart, through my hand, and onto the page.

My hope for this year is that I can be fully and deeply alive in the days I am given.

It’s not much of a resolutions list, but it is resolution. It’s a moment of clarity in a complicated reality. And for that, I am grateful.

What are your hopes for the coming year?

Since the sarcoidosis aggressively re-infiltrated my joints a few weeks ago, playing the piano has become nearly impossible. I can’t get my aching, swollen fingers to unfurl correctly on the keys. And without me providing motivation—or coercion—Andrew has also quit practicing.

We’ve been taking lessons together since he was five (he’s about to turn eight). Music was an important part of my childhood, and everything I read about child development suggested that getting kids started on music or foreign language earlier grows their little brains bigger. And we found a wonderful piano teacher. Theresa is pretty much the antithesis of the stereotypical knuckle-cracking, pinched-lipped, old biddy perfectionist that everyone seemed to have endured 20 or 30 years ago. She loosely follows the Suzuki playbook, but lets her students pick fun songs to work on along with the regime of “Lightly Row” and “Honey Bee.” She doesn’t start kids on mind-numbing scales until they’ve progressed enough to see the reason for inflicting scales on themselves. Instead of reprimanding kids for not practicing—or not practicing adequately—she rewards them with the candy of their choice from her heaping candy bowl if they completed five 20-minute practice sessions each week.

At the time we started Andrew on piano lessons, I was in the throes of neurosarcoidosis and infusing Cytoxan every other week to treat the intense vertigo and pain the disease brought. I felt like I wasn’t participating in Andrew’s life. Before Andrew and chronic illness came into my life in the same few months, I’d imagined myself as an active, outdoorsy parent teaching Andrew how to do all the active, outdoorsy things I loved, skiing, ice skating, snow shoeing, hiking. I foresaw long family camping and backpacking trips. Instead, I spent more days than I’d like to remember laying in bed, vomiting after chemo or immobilized by vertigo, while Jay took Andrew out to teach him all the active, outdoorsy pastimes that were mine.

“Have you ever had an adult take lessons?” I asked Theresa one day after Drew was done banging out “Twinkle Twinkle Little Star” and inhaling a Kit-Kat. I had played the French horn through high school, and found myself drawn to the idea of reconnecting with music and of being able to share that with Andrew.

“Many times,” Theresa said. “But my adult students have to participate in all the same recitals as the kids.”

“I couldn’t just take lessons with Andrew and sit out the recitals?”

“No, that wouldn’t push you enough. And it wouldn’t be fair for the kids like Andrew who have to do the recitals.”

I could get through a recital, couldn’t I? I’d taught English literature to non-native English speakers in a foreign country. I’d taught creative writing workshops in the basement of a bookstore. I’d given a little speech in front of the huge student body of a Thai high school. I could play music with a bunch of kids, right? And there’d be chocolate.

“What do you think, Andrew?” I asked. “Would you want to do music together? Or would you like it to be your own thing? I’m OK either way.”

“Do it!” Andrew said. “I want you to do it.”

He seemed genuinely excited at the idea.

“I’ll do it,” I said, keeping my eyes fixed on the candy bowl.

At Theresa’s recommendation, I bought my own copies of Andrew’s piano books. Since I’d been away from music for so many years—and since I’d never learned proper piano fingering or gotten very comfortable with bass clef notes (with French horn you only have to contend with treble clef)—I’d start at the very beginning, with the first Suzuki book. Andrew and I started together on “Twinkle Twinkle Little Star,” which the Suzuki book called “Combination.” I was very excited.

From the beginning, I progressed a lot faster than Andrew did. Playing for a few weeks jolted loose some memory of all those years I’d spent on my French horn. Of course I was also an adult with much more advanced fine motor skills and cognitive capacity (on good days at least). We talked it over. “I don’t want to play if it makes you feel bad,” I said. “I’m a grown-up, and I’ve done this sort of thing before. This isn’t a competition. I want to do this with you.”

“You don’t make me feel bad,” Andrew said. “You’re really good.” He has always seemed genuinely pleased for my progress and proud of my developing skills. I’ve tried to be attuned to our skills discrepancy. I don’t want to lord my abilities over him or outshine him. I’ve been careful to introduce myself as “Rebecca—Andrew’s Mom” at our recitals. I’ve asked Andrew many times if he thinks it’s weird that we “do” piano together. He’s said no, every time.

For the past couple years, we’ve had back-to-back lessons at Theresa’s every week I’ve been healthy enough to show up. We’ve participated in six recitals together. We even convinced Jay to get up and beat on a drum to accompany us in a duet we played for the “Family Fun” recital. Playing the piano—at home during practice sessions, for lessons at Theresa’s, and on the grand piano in the space Theresa rents for recitals—has become more important to me. Music stretches me, and yet it soothes me. Hearing my improvement after playing the Suzuki adaptation of Bach’s Minuet in G Minor roughly seven million times is more satisfying than I can explain. Perhaps because much of my life feels wildly out-of-control when it comes to the big-ticket items like working and parenting, I get an extra kick out of exerting my will on Schumann or Beethoven.

I want Andrew to experience this same confidence boost that I get from chipping away at a tough song. It works for me, so I want to transfer the lesson to him. But he doesn’t want to work on piano songs right now. In truth, he’s never been the world’s most enthusiastic practicer. I’ve created about 35 different formats of practice charts to keep Andrew motivated. I’ve flat-out bribed him some months. A couple times I’ve said, “Practice five times a week for the six weeks until the recital and daddy and I will get you a big Lego set.” That one works nicely, but we can’t afford to go to that well too often.

And Andrew has become even more recalcitrant about practicing since I’ve had to scale back. To be honest, I hate making him practice. He already lacks so much control in his life, and he’s been struggling with my most recent setback. He’s asked many times in the past few weeks variations on the theme of “What’s wrong with your hands, Mommy?” and “What are the doctors doing for you?”

Mastering the fingering of “Lightly Row” and then memorizing the piece isn’t doing it for him. And I can’t bribe him into deriving something essential from piano. That has to come from within him.

I want piano to tug at Andrew’s soul, like it does mine. I muddle my way through complicated songs, struggling what they require of me. When I find a clear path deeper into the music, it feels like I’ve grasped something ineffable and essential. I catch myself practicing chord fingerings on the bed-spread while I watch television with Jay. I mull over minor chords, and fiddle with slightly atonal ones. “Do I like these notes, the way they uncurl inside me all day long?” I do.

But Andrew’s heart isn’t in piano now, just as my arthritis-ridden joints aren’t. This makes me sad. I’m not giving up on either the boy or my hands in the long-term, but for now we’re both taking a break. I’m proud of myself that I was able to ask him whether he wanted to keep taking piano together right now, and to want an honest answer. He said no. Actually, he said, “I’d like a break.” And I’m ok with that. I think that reflects that Andrew and I have enough time and activities together that we don’t need piano in the same way. It does feel like the end of an era, though.

My hope is that I’ll be able to return to practicing soon, and that Andrew will witness the joy and the respite—and the challenge, the growth, the intellectual stimulation, and the emotional connection—music brings me. Maybe someday Andrew will be ready for music again, on his own terms in his own time. I hope so.

Is there something important to you that you’ve been forced to give up or ease up? What have you given up trying to make your child care about?

This litany of to-dos and worries—all of them trivial—kept me up until the middle of the night. At some point shortly before dawn, I finally convinced myself to “STOP!”

Now I’m waiting to get my monthly dose of chemo and TNF inhibitor. It’s a good thing I’m back in the chemo room before Christmas. I’ve written about how special a place the chemo room is before. But I’m grateful to be here today for a more melancholy reason. One of the women I’ve had personal and intense conversations with for the past couple of years when our treatment days overlap is here. We know each others’ family dramas and disease sagas. She has been battling cancer, first breast and now brain. She isn’t here for treatment today—just to see the doctor about pain management strategies. He’s stopping her chemo and radiation because he can’t stop the cancer. She said she wants one more Christmas with her family. Her teenaged and grown-up children are gathered around her here today. They bring her cookies and coffee. They are talking about movies. “We should stream the Englishman Who Went Up a Hill and Came Down a Mountain,” her husband says. My chemo friend looks like she isn’t falling apart. She is wearing a hat with reindeer antlers.

I have never learned this woman’s name. (We rarely exchange names in the chemo room.) But I think of her as friend, and I feel like crying. But one of the rules of the chemo room is “No crying.” So I try to be glad that I am here today with the opportunity to say goodbye to this kind and strong woman.

I wonder what thoughts have been swirling in her head these past few nights. I bet it’s not about the logistics of gift-giving or wrapping paper. I am ashamed at my descent into triviality.

As I listen to my friend talking with her family across the room, however, it turns out they are in fact constructing a Christmas shopping list. A young woman is recording ideas on her iphone. “Make sure to get a ham,” the husband says. “Hang on. We’re not done with gift ideas,” my friend with cancer says. “What about us all chipping in to get Aidan a wii?”

Once again, the chemo room makes me reassess. It is a privilege and a necessity to dwell on the mundane. I sometimes (especially at 4am) feel ridiculous for fretting incessantly over the minutiae of the holidays. At the same time, though, it would be terrifying and terrible to be forced to stop thinking about what to cook, what to give, how to make others happy – to have all of that crowded out of your mind by the profound that is so often profoundly sad. There needs to be room for both.

Think of my friend whose name I don’t know as you make your holiday preparations. Celebrate the details. Be merry and be well.