Category Archives: gratitude

It’s Paperback Release Day for In the Kingdom of the Sick!

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It’s hard to believe it’s been over a year since In the Kingdom of the Sick was published. It’s been a busy spring and summer with book-related speaking events, teaching summer classes, and some medical stuff, and somehow it’s the release date for the paperback version already.

I’m really excited, and I hope that the book will reach a new audience. The issues the book raises are evergreen, and the questions I receive at panels and events and e-mails I respond to continue to advance the conversation about chronic illness in this country.

Writing a book is such an emotionally volatile process—you toil away for years, send your book out into the wide world, and if you’re lucky you get some good pub date exposure…and then life very much goes on as it was before. Well, that’s not totally accurate; I am certainly getting more sleep and sunlight now that the writing and editing and intense promotion is over, but it’s very much a process of detachment. I poured everything into each stage of the process, and now it’s out there, and I am here, teaching, writing, mothering.

I am extremely grateful for all the support the book received when it was published, from appearing on Fresh Air, getting reviewed in the Wall Street Journal, being named an Editor’s Choice for Adult Books 2013 by Booklist, to all the writers and bloggers who took the time to feature the book and post reviews and interviews. A more complete list of reviews and interviews can be found here. I am also thrilled with the opportunities I continue to receive to talk and write about gender and pain, rare diseases, prevention and public health, etc., and hope the conversations about chronic illness and the ways in which culture, science, and technology shape the experience of being a patient will keep going.

I’d love the paperback to reach new readers, and so I’m asking for a little bit of help. If you can, will you:

1. Share this post on Twitter, FB, and other sites
2. “Like” the FB page for the book to stay updated on events and relevant articles
3. Follow me on Twitter
4. If you’re read In the Kingdom of the Sick, it would be great if you posted a review on Amazon. It is important exposure, especially as the paperback debuts…

Thanks so much for your continued support, and if you pick up a paperback copy, I’d love to hear from you!

PS–Incredibly, this month marks six years since my first book, Life Disrupted, published, and it’s awesome to hear from readers regularly and know that the issues surrounding chronic illness and young adults still resonate. Thank you!

Burnout…(And Finding a Way Back)

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Now that things are settled down and more predictable after a long, hectic fall, I’ve struggled a bit to find my footing here. For so long, ideas and essays about living with chronic illness were natural and easy for me to develop: chronic illness and relationships; chronic illness and employment; chronic illness and pregnancy/infertility; and parenting with chronic illness, just to name a few.

More recently, the ideas aren’t so easy. Part of it is just plain old burnout, the inevitable physical and emotional fallout of the intensive process of researching, writing, revising, and promoting a book. If I don’t have a strong idea, I just don’t write. I can’t, so I wait until it feels right. It’s not an ideal way to keep up subscriber numbers and analytics, but it’s how I roll.

But it’s more than that, I think. I have a job, I have a writing career, I have a preschooler and a husband who deserve the best of me, I have family members with medical needs. The other spheres of my life take up so much of my head and my heart that there isn’t a lot of room left to talk about or think about chronic illness or to be a patient. This is partly possible because I am pretty stable right now and don’t have to deal with the major upheavals of my own hospitalizations and setbacks. It’s a lot harder to ignore chronic illness when its needs are immediate and non-negotiable.

Don’t get me wrong, illness is a part of my everyday life, from the crazy scheduling maneuvers to work in chest physiotherapy every day (or late at night, as it were) to running out of breath when I’m reading bedtime books to my daughter to the days when I just have no energy and wonder how I’ll last the long commute home. But papers still need to be graded, deadlines still need to be met, my daughter still has swim class, and the household still needs running. In many ways, I can’t afford to be slowed down by illness right now, and while I recognize such stability is borrowed time, I’m grateful for it when I have it.

Slowly, though, the ideas are starting to percolate again. I’m pitching ideas to editors. I’m posting here. I’m being more discerning about how much I say “yes” to and learning to say “no” more. Maybe they aren’t as personal and anecdotal about living with illness as they once were, but the ideas are there nonetheless. As a writer and as a patient, I’m just in a different place, but I’m starting to see that too is an inevitable thing, and I’m figuring out how to make these changing identities coalesce a little better.

One and Only; One and Everything? (Or, Parenting after Infertility)

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First there was Frank Bruni’s NYT essay on the gift of siblings, which was quoted, linked to and shared all over social media. It’s a lovely piece, and one that made me pause and really consider how much of my life experiences were and are shaped by having siblings, in my case, older brothers.

Bruno quotes writer Jeffrey Kluger, who observed that ““Siblings are the only relatives, and perhaps the only people you’ll ever know, who are with you through the entire arc of your life.” That shared history and familiarity can be a tremendous gift, and source of comfort.

Next came Lauren Sandler’s Op-Ed on being an only child and being the parent of an only child, a precursor to the release of her new book, One and Only: The Freedom of Having an Only Child, and the Joy of Being One. (It’s next up on my reading list.) In her article, Sandler takes on the misconceptions attributed to only children—that they are spoiled, selfish loners—as well as their parents, who must also be selfish, or care more about money or material goods than parents who have several children. She uses research to beat back these assumptions, and urges readers to consider the numbers:

“In hundreds of studies during the past decades exploring 16 character traits — including leadership, maturity, extroversion, social participation, popularity, generosity, cooperativeness, flexibility, emotional stability, contentment — only children scored just as well as children with siblings….only children are, in fact, no more self-involved than anyone else. It turns out brutal sibling rivalry isn’t necessary to beat the ego out of us; peers and classmates do the job.”

Lately, it seems like conversations about family dynamics and the decisions we make regarding family size are everywhere, and I find them cropping up all over the place in my own life, too. At two and half, my daughter is at the age where many of her classmates and friends now have younger siblings. All her cousins have siblings. Sweetly and innocently, she’s already asked me why she doesn’t have brothers or sisters. “Some families and bigger, and some are smaller,” I tell her. “What matters is that families love each other.”

When we’re in line at grocery stores, when I’m pushing her on the swings at the playground, or chatting with other moms, people ask me if she’s my first, if we’re going to have more. It’s a totally natural question, but if you’re parenting after infertility (and high-risk pregnancies) and/or parenting with chronic illness, it isn’t an easy or automatic question. It’s one I’ve been fielding since I was still pregnant with her. My response then was that I was focused on bringing this baby into the world safely, not future babies.

My response now echoes a similar sentiment. “We’re enjoying where we are right now.” After the long journey to get here, the fact that we have this happy, healthy little girl still blows our minds. Everyone responds to parenting after infertility in different ways. We never thought we’d be here, and some days it feels almost greedy or presumptuous or lacking in gratitude to assume lightning would strike twice like this. That might sound strange, but I wonder if some of you out there can relate.

What is a normal conversation for many other families, what is a natural progression in size for many families, is anything but for families with infertility or chronic illness (not that these are the only variables that make this complicated, of course—these are merely the ones that shape my perspective.) I wish this conversation was different for us, but that isn’t our reality. A few years ago, I wrote that the responsibility involved in making a decision like this—to embark on this high-risk road—was staggering. But really, the responsibility of being a parent in general is staggering, the competing considerations don’t get easier: We owe her the best of us, emotionally and physically. Siblings can be so enriching and wonderful. So are healthy (relatively speaking) parents.

It’s not an either-or situation, clearly, but what our responsibilities are to her as a toddler and young child and what she might want or need later are sometimes hard to navigate.

If she is an only child, I admit I sometimes worry about the misguided assumptions about only children as being spoiled or expecting the world to go their way, but I also know that her friends, relatives, and her experiences being in school, existing in groups, and generally learning to be social and empathetic. We’ve worked consciously to find a community, and communities within that larger community, where she will be supported and where she will feel connected to people beyond just the two of us. She calls her extended family and her gaggle of cousins “my people” and those bonds are incredibly important, and will be her shared history, too.

As I read Sandler’s essay and some related interviews with her, one thing that really struck me were all the negative labels attached to parents with only children—that their choices reflect selfishness or materialism, that they chose a small family so they wouldn’t have to deal with the chaos and inconveniences of more children, etc.

Maybe their choices reflect what is best for their individual family unit, and what allows everyone to thrive. Maybe it has always been their plan, their ideal social, economic, and philosophical situation. Maybe it isn’t their ideal choice, and the inability to have more children is a source of immense sadness. Whatever the reason, I don’t understand or appreciate the instinct to judge this choice, to assume negative motivations behind it, or to question the decisions parents make in terms of limiting their family size.

I know firsthand the many benefits of siblings. As a parent in a potential only-child family, I’m hopeful the benefits and opportunities of this path are enriching, too. I appreciate Sandler’s work and that she’s using research to speak back to these stereotypes—I wish she didn’t have to, though.

Living the Dream (Or, It Takes a Village)

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Every now and then, like when it’s well past midnight and I’m setting my alarm for 4:45 so I can get some work done, or when we’re trading notes on how many loads of laundry and changes of clothes Norovirus necessitated, my husband and I will mutter “Living the dream,” and smile (smirk?) at each other.

Of course we always say it in jest, and because sometimes a little levity can make another pre-dawn computer session or raging case of toddler vomit a bit more manageable.

The thing is, though, we really are. Living the dream, that is—our particular notion of what a dream should look like, anyway, and all the lack of sleep and crazy juggling and contagious viruses and daily minutiae pale in the face of that.

I don’t like winter. The days are too dark, everyone is sicker more often, and this winter there are just too many variables to manage—teaching, side projects, book launch, merit review, household maintenance, chest PT, and of course, the really heavy stuff, like watching my father’s kidney failure progress and working on the logistics of a transplant and medically complex post-op care plans. I am tired, and I just want it to be spring.

The irony that spring represents hope and renewal is not lost on me. (But really, I’d be happy with weather warm enough for a trip to the playground, or possibly a nap.)

Anyway, as we claw our way through this snowbound February (and yes, it really is starting to stay lighter later on), I’ve taken to re-framing how I think about nineteen-hour days and the often overwhelming nature of the here and now.

Living the dream. We have a happy, healthy, joyful little girl. When she is at school, she is in a wonderful place where she is loved and where she is thriving. I get to spend so much time with her every day, a lot more time than I would in other professions, and I try not to take that for granted, ever. We go to the library and playspaces and gymnastics class, we do playgroups and playdates. We read books on the couch and hide treasures in her tent and I try to say yes to finger paints more often than not—“Just throw me in the tub right after, okay, Mama?” All the other stress and sadness and obligations of life fade away.

Part of this is because higher education is a bit more flexible schedule-wise, part of this is because I am willing to work late nights and early mornings, and a huge part of it is because I work for a wonderful institution with accommodating superiors and administrators. They support me and allow me to do what I enjoy with students I enjoy. There is room for professional growth, and innovation and initiative is rewarded with responsibility and recognition.

I have an agent and a publishing team who have been equally accommodating, and whose guidance has really helped my writing career. And lately (stay tuned) some incredible writing opportunities have come my way, things I wouldn’t have thought possible if I had sought them out myself, and all I can do is be grateful and give them my all.

My husband is almost two years into starting his own business, and while the hours are long for all of us, the benefits outweigh the (many) stresses. Seeing him get great press or expand his production facilities to meet increased demand is nice, of course. But knowing he is doing something he believes in, and something that while grueling, allows him the flexibility to come to her doctor appointments, drop her off at school, and be present in so many aspects of her daily life, is even better.

Along the way, we’ve been blessed personally and professionally with mentors and cheerleaders, those whose encouragement, advice, and enthusiasm have helped us to take risks and fight for the life we want.

Way back in the day, I wrote this post on how it takes a village when it comes to having chronic illness and raising children. And it absolutely does—when she’s sick or I’m sick or we’re both sick, we need helping hands. But unsurprisingly, my pre-child understanding of that village was a bit narrow.

The village stretches far beyond those who can help out when we’re sick, or watch our daughter so I can go to the hospital. It also includes the cheerleaders and the mentors, the bosses and the schedulers and the administrative staff, the professional colleagues who go out of their way, the doctors, nurse practitioners, and nurses who manage our conditions, my physical therapists, the daycare staff, and so many more. It’s the family and friends who are a constant, and those who understand when life gets complicated and we fall off the radar.

If I’ve learned anything in the months since we started looking for a living donor for my father and we’ve witnessed the amazing outpouring of support and sacrifice, it’s that the web of people who care is intricately linked and stretched out beyond our immediate circle, and beyond the circle beyond that circle, even.

I won’t deny this is a hard season we’re in, in every sense of the term. As is always the way, it seems like there are so many exciting things going on right when so many tough things are. I know things will get easier soon, when the book is launched and I’m feeling better and the work winds down a bit. I also know that things could get much harder before they begin to get easier. I can’t wait for spring, but the enormity of what could happen between now and then is hard to translate.

For now, I am keenly aware of all the scaffolding that exists that supports us and enables us to live this dream, in all its imperfections.

On 2013 (Or, Side by Side)

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It was helpful to re-read my New Year’s post and its emphasis on being more present as I thought about how to approach this first post of 2013. Being present, being mindful, really, involves focusing on the actions and emotions of the moment.

Grief. Joy. Sadness. Happiness. Side by side.

A couple of years ago, once we were through initial trauma of my mother’s brain injury and could focus a bit more on issues of rehabilitation, the losses stretched out in ripples, and the fear and sadness also mixed with gratitude and anger. After so many years of struggle we were finally expecting a baby, and here I was, in my third trimester, on bed rest and fighting to keep that baby safe. I wanted my mother. I wanted my daughter to know her grandmother. I wanted her birth to be free from all this heartache and upheaval, not just for me or for her, but for all of us. I was angry that we wouldn’t be able to just have the joy.

But I didn’t realize then the heart and mind’s capacity for preservation and compartmentalization. I didn’t know that I could weep for mother’s situation and yet hold my daughter in my arms and feel pure, all-encompassing joy. That even when it felt like things were crashing down around us—mother in rehab, father in the hospital, maternity leave that ended early, sickness for baby, sickness for me, plus all the normal newborn, breastfeeding, sleep deprivation woes—I could feel so utterly content, that even as my hold on all the other moving parts of my life slipped through my fingers, I never felt more solid, stable, or sure.

Over the past two years, I’ve often thought about this dichotomy: How I’ve never been happier than I am when I am with my daughter, how this always-cheerful, adaptable, chatty, precocious little girl has changed us, changed everything. How I gain so much every day I get to be her mother, even as more and more slips away. How I’ve re-calibrated to an ever-shifting sense of normal, where I watch people I love suffer, where we all shed more tears than we used to. Guilt lingered—did the many tears I’ve shed somehow take away from my gratitude for her? Did the joy and the love somehow mean I didn’t appreciate the gravity of all the stresses around us? Could I feel both so completely and simultaneously and have each one be true, be real?

Yes. If there is anything I have absorbed from the past few years, it’s that.

I remember so clearly the day this fall we found out my father’s lone remaining kidney was indeed failing. I called my husband but couldn’t get all the words out to tell him, there simply wasn’t enough air. Heart-ache, I repeated the word in my head as I battled my way down busy Huntington Ave, the traffic lights blurry through hot tears. This is what it feels like when your heart aches.

I picked my daughter up from school later that same day and listened to her chatter away about her day and who and what she played with. We went to the library, where we played with trains and picked out books. She held my hand in the parking lot, and helped me empty the dishwasher. In the moment, in the middle of our normal activity, I found the air I needed. I laughed. Again and again the pieces threaded back together.

Watching my father deteriorate these past few months has been a series of chest-clenched moments, where I know what I see but don’t want to see it, where I can’t talk about it so most times, I don’t. I’ve been conscious of creating time where my parents can be with my daughter. No matter how terrible he feels, when he is with his grandchildren, when they run to him with their arms outstretched, when my daughter climbs onto his lap and says, “I love you so much,” nothing else exists for him but that moment.

Waiting for his transplant and watching him get worse and worse while at the same time, having so much hope and optimism that he will have a good outcome…again, we have grief and joy, sadness and hope, all mixed up.

I won’t say that the heart-bursting gratitude we have for our daughter, for this life we’re living with her, is sweeter or more appreciated because of all the difficult stuff that exists right along with it, because I can’t imagine feeling any less than this, regardless of what else might be going on. No one ever gets just the joy, that’s not how life works. But if we’re lucky, even with the sadness, we still get joy. We can feel both so completely and simultaneously and have each one be true, be real. Side by side, each a measure of love.

So that’s my hope for 2013. I don’t know how much of the tough stuff the year will bring, but I want to be mindful and fully present in the joy wherever we can find it, to not let it slip by without squeezing every ounce out of it.

CaringBridge and National Family Caregivers Month

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Did you know November is National Family Caregivers Month? I didn’t, until CaringBridge reached out and let me know about their celebration of family caregivers. This awareness month comes during a time of year when we are particularly reflective and attuned to gratitude and the blessings of family, but if you’ve been following my blog lately, you know why the timing of this is particularly compelling for me:

We’re currently trying to find my father a match for a living donor kidney transplant. The ongoing coordination of this outreach requires a lot of time and energy, and more than that, the emotion of it is intense. This isn’t just a cause or a platform or some hypothetical advocacy—this is my father’s life.

None of us, especially my father, are new to caregiving. For example, just before my daughter was born my mother had a catastrophic health event that has forever changed her life and all our lives, and we’ve all juggled going to doctor appointments, picking up prescriptions, staying overnight, cleaning, cooking, doing errands, coordinating care, and managing the emotions that come with seeing people you love suffer and not being able to change it.

The National Family Caregivers Association writes, “Day in and day out, more than 65 million family caregivers in this country fulfill a vital role on the care team. No one else is in a better position to ensure continuity of care. Family caregivers are the most familiar with their care recipients’ medicine regimen; they are the most knowledgeable about the treatment regimen; and they understand best the dietary and exercise regimen.” It is a privilege, and a huge responsibility.

I write this from the perspective of both a caregiver (at times) as well as a patient, someone who has to rely on my husband and relatives when I am the one in a crisis, when I am in the hospital, or unable to leave the house. It is humbling to need to ask and rely on help, and it is challenging in many other ways to be the one providing care. Family caregivers, especially spouses, handle an incredible amount of stress on top of the everyday realities of work, household obligations, etc.

Typically, you don’t see sponsored posts* here. There are many reasons for that, (perhaps another post on its own?) but this time, the themes are so incredibly relevant and authentic to what I’m talking about on this blog, and the company, CaringBridge, is a nonprofit organization I truly admire and have utilized many times over the years, so it seemed like a natural fit. CaringBridge offers patients and families free websites to tell their stories, post updates, and communicate. It offers many ways for people to care for each other during any type of health event and is available 24/7, free to use, and accessible to anyone, anywhere.

Through CaringBridge sites I’ve followed little children fighting cancer, preemies in the NICU, and fellow health writers who just want a safe space to focus on the medical updates in their lives. There is room for photos, messages of support, and other personalized touches, including multiple privacy settings, that help connect patients and families in crisis. There is no advertising on CaringBridge; it is dedicated to families, not profits. That really resonates with me.

Coordination of care is always challenging, especially during acute health crises. After leaving an inpatient team meeting or getting important test results, it can be overwhelming to have to call and e-mail everyone to keep them posted, or keep track of all the details that need to be handled. Friends and family usually really want to help, but it’s sometimes hard to ask for specific, concrete things. In response to user requests to help centralize support, CaringBridge now offers CaringBridge SupportPlanner, an online calendar that helps family and friends coordinate care and organize helpful tasks, like bringing a meal, offering rides, taking care of pets and other needs.

I have been the patient in the ICU bed, struggling to keep friends and family in the loop, and I have been the relative huddled out in the corridor, trying to send texts, answer e-mails, and make sure someone has gone grocery shopping. I am glad services like CaringBridge sites and CaringBridge SupportPlanner exist—living with illness and caring for people with illness is hard enough. Some of the details should be easier to manage.

I am pleased CaringBridge is taking time to raise awareness for family caregivers, and acknowledge all they do on a daily basis to advocate for their loved ones, and I am grateful to have supportive caregivers, friends, and family in my own life. This month, take a moment to acknowledge those you know who are caregivers, and tell us a little about them here—they don’t do it for praise or notice, but a little encouragement can certainly go a long way.

(*And any questions about sponsored posts? Let me know! I very rarely post them, and will always be transparent. This content is sponsored by Caringßridge. Any opinions expressed in the post are my own und not those of CaringBridge.)

On Gratitude

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Two years ago, I wrote about being grateful for the knowledge that comes with a celiac diagnosis, and more than that, for the simple gift of being present at Thanksgiving, instead of being in the hospital.

Last year, I wrote about being grateful for the amazing blessing of my newborn baby girl, and for all the dedicated health care professionals, advanced technology, and support that allowed both of us to make it. I also wrote about how complicated an emotion gratitude can be when to comes to serious illness.

Here we are, twelve months later.

Motherhood. In the best way possible, it throws all the pieces of you up in the air and when they settle back down to the ground, they are forever rearranged. Family illness, work, writing a Book, (and yes, that’s a capital “B” in my head)—in ways less luminous and more wearying, they also throw up the pieces of me, the pieces that make up us, and reconfigure them all.

And here I am, a year since my last gratitude post, a year removed from the immediacy of birth and the physicality of newborn-hood. A year removed from the decision to re-structure the whole book, and now some 85,000 words in a new direction. A year and six classes and multiple committees removed from the end of maternity leave. A year of negotiations and boundaries and compromises that accompany being a mother and a daughter, a patient and a caregiver.

Amid so many changes, I am at extremes (as usual).

I find myself grateful for the smaller details, noticing them in more vivid technicolor than the pale backdrop of daily life: a chuckle over the monitor; an unsolicited hug. An unexpectedly light commute that means I am home earlier to play; unseasonably warm weather that means one more day at the playground. Putting on my headphones and squeezing in some revision hours; finishing the very last paper of a deluge. Making time to try a new recipe; eating dinner in the dining room together because that makes a Wednesday night something better than. The magic of a Thursday night, when the meat of the week is behind me. Coffee with a friend. A clean house.

And the much bigger stuff: To witness my husband take a risk and follow his dream, so that when he tells our daughter to do that some day, it will not ring hollow. To able to work on a book that explores questions I didn’t know the answers to, because really what more can a nonfiction writer ask for?

And the biggest thing of all, the thing that is immeasurable, the thing that still makes me catch my breath in the grocery store aisle and smile to myself when I think of a certain smile: grateful to be somebody’s mother, grateful to be her mother.

Take a Deep Breath

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The world is a decidedly less funny now. Yesterday, an incredibly wise, insightful, humorous, and courageous man succumbed to his lifelong struggle with cystic fibrosis. If you’ve read Life Disrupted, then you remember how sage Brian’s thoughts on life, love, and chronic illness were.

It was a privilege to know Brian and to share a part of his story. The past couple of years were particularly tough for him in terms of disease progression, and he made the decision to join the lung transplant list recently in light of that. In fact, he was called in for a possible lung match when things took a turn with an overwhelming infection. I cannot imagine the emotional roller coaster and devastation of that scenario, especially for the many, many people who loved Brian and supported him every step of the way and were hopeful for new lungs.

Today is a gorgeous sunny day, with low humidity and plenty of blue sky. It is the perfect day for all of us, especially those of us with respiratory problems, to take a deep breath. To inhale and exhale, and appreciate the simple gift that motion is.

It should never be as hard as it is for some.

I can’t think of a better time or a better reason to remind you about the life-saving gift that is organ donation, not just for people with cystic fibrosis or PCD, but for patients of all ages and diagnoses who are waiting—waiting for a cure, or waiting for a chance to extend their lives…simply waiting.

Morning Snapshots

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One of my favorite things is the deliberate, languorous stretch of the newborn: their little bodies uncurl themselves s-s-l-l-o-o-w-w-l-ly, with chins jutting out, heads moving side to side as if to protest “No! I won’t rouse!” while their elbows push out and their tiny little knees bunch up.

This little ritual, usually precipitated by the lightest of feathery kisses on her soft cheek, was, for many months, the best way I could ever imagine starting our day.

Now, the ritual is louder, more active: I hear her laughter and squeals of delight and lay still, ears poised to catch the consonant-vowel combinations she so casually drops into her stream of babbling come through the monitor. I hear the distinct “thump” as she kicks the crib mattress and wonder what position I will find her in (we don’t like to repeat our geographic feats, you see.)

I walk softly into her room, undetected for a moment. She is usually busy chattering conspiratorially with her lovey, and when she looks up and sees me there, she is a wriggling, giggling, gasping bundle of exhilaration. No doubt about it, she is ready to start her day.

Those moments, when we meet eyes and she laughs and smiles and her arms thrash and her legs flail and if she could, she would bound out of her crib and into my arms completely by her own volition, are the best way I could ever imagine starting a day.

It hit me recently that this other routine of ours, this rhythm we found, also means the slow, lazy stretch of the newborn is no more. Never more.

I want to carve that image into my memory permanently, so it does not slip away the way time seems to these days. I don’t want to say this is bittersweet because there is no bitter. Just a wistfulness, and the exhortation that time must slow down. Not because I want her to stay a baby—knowing her sparkly self now, I cannot wait to see the person she becomes. But rather, because as I sometimes whisper in her ear at night when she curls up on my shoulder and settles in for a sleepy hug,

It is too good to go this fast.

I don’t want to miss a minute of it.

Giving Thanks

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I was sandwiched between two people on a crowded subway trolley a couple of weeks ago when I smelled it. Instantly, my stomach tightened with rolls of nausea. I grabbed the silver pole next to me with whitened knuckles. Do not throw up. And in a matter of seconds, I wasn’t an adult on my way to work, I was a little kid on a cold November morning about to have the warm blanket placed over my legs in the operating room.

The woman who sat down next to me smelled just like anesthesia. I don’t know how to describe the smell accurately, but it is somewhat sweet and plastic-y at the same time. It is a very particular smell, and it gags me (obviously). Usually I am more prone to hear songs and associate them with a time or place than I am to associate smells, and I’ve never had a more visceral reaction to a smell than I did that day on the train.

It was fitting that this occurred on a cold, sunny November day. You see, when I was little and needed surgeries to drain infections from my head, ears, sinuses, etc, they tended to cluster around the holidays, the peak infection season for me. Also, we tried to plan surgeries for when I had a day or two off from school anyway so as to build in some extra recovery time. Accordingly, Veteran’s Day and Thanksgiving week were prime candidates, and in some particularly acute circumstances, Christmas Eve day also became a go-to surgery day. The sharpest details from these accumulated late fall surgeries are being asked to count backwards from 10 to one as the anesthesia mask was placed over my face, and the wrenching nausea that gripped me in the recovery room (I’ve since learned to ask for Zofran)—and that particular smell brings me right back to those moments.

So where am I going with the charming tale of anesthesia memories? Well, it’s two days before Thanksgiving and our house is starting to fill with much better smells: cornbread baking, sausage sautéing, cider mulling. These are the smells that should accompany November, and I’m happy to replace the surgery smells of my childhood and the inpatient smells of many lung-related holiday hospitalizations as an adult with them.

And so the traditional Thanksgiving post is tinged with special appreciation for where I am in this moment, and the people and circumstances who are part of that:

My family, who was there for me during all those surgeries and is there for me in so many ways today.

My husband, who is seriously amazing (and fairly obsessed with making Thanksgiving perfect).

My friends, who are funny, smart, caring and patient.

My readers, those who buy the book, show up at readings, or get in touch with me to share their feedback, and those who take the time to read this blog—without you, all this would exist in a vacuum.

My favorite reads and the wonderful writers, scholars, and bloggers who always give me something to think about.

My fabulous physical therapist, who gets up at 5am every day and fights gridlock traffic to show up at my house with a smile and deliver superb chest physical therapy.

My doctors, who actually communicate with each other and aren’t deterred by the lack of easy or obvious answers when it comes to this body.

My job and my husband’s job, because at the end of the day if we both still have them and have health insurance, we are fortunate.

And lastly, the fact that despite their many health problems, everyone I love is healthy enough to sit at the table this year.