“I love you! Bye bye!”

And with that, she was too engrossed in arts and crafts to give much notice to our leaving. I spied a glimpse of her through the window as we crossed the parking lot: earnest, happy, comfortable.

As far as first days of school go, it was a success. (She’s not quite two so it’s a daycare at a school, but she likes calling it school and feeling like a big kid.)

There is so much I am excited for her to learn. Now, she’s known all her colors, numbers, and letters for a really long time, is good with self-care, and says “please,” “thank you,” and “bless you” when people sneeze. Those aren’t the kinds of lessons that matter to me right now. Instead, I am eager for her to socialize. To learn to share, and to cultivate an awareness of others and their needs in relation to her needs and her wants. To learn how to situate herself and her personality within a group of peers, and to remain confident in her ability to play and discover independently, too. I am excited to see how she grows and changes from these oh-so-important life lessons.

It’s a big change for our family, out-of-home care, and we love the place—dedicated staff, part-time hours that meet our needs, and wonderful activities and opportunities. It’s a good change, and she is thriving there, so it is time to give her the space to do that. But it represents the beginning of so much: the little world she has known so far is getting bigger, and for the first time, people beyond our relatives and our close friends will have direct influence on her. This is all natural and normal, but letting go…it is not easy.

I tend to think in semesters, an inevitable byproduct of twenty-one years of schooling and now several years teaching in universities. September always feels more like a new year than January 1 does, so it is fitting that so many things are transitioning right now.

The final copy edits are done on my book, which is now with the typesetter. I should see proof pages soon. Obviously I feel an enormous sense of relief to be at this stage, but it’s also unsettling. Maybe this is a normal part of writing, but right now, I am overwhelmed by the idea that this is final, there is nothing more I can add or change. Right now, as it turns from a marked-up manuscript into an actual book, I am plagued with what isn’t there, the themes and ideas that I didn’t delve into. Scope is incredibly hard to manage, and while intellectually I know I can’t include everything that’s ever interested me or is somewhat related to my topic or I’ll have a thousand pages, I can’t quite silence the little voice that asks, “What about…?”

I tell myself I’ve done the best I can, I’ve put in the hours and the revisions and asked the right questions and now it is out of my hands. Soon these pages will be out in the wide world, and so many more eyes will see them beyond the tight little circle of readers and editors I’ve had. The words will have to stand on their own, and it is time to give them the space to do that.

It is normal, it is natural, it is the progression of things.

But when pieces of your heart are out there, the letting go? It is not easy.

Last week, WBUR, the local NPR station, ran a week-long look at Lyme disease and chronic Lyme disease. The controversy over chronic Lyme disease (and specifically, how social media and the Internet have influenced patient advocacy and Lyme literacy) is something I explore in a later section of my forthcoming book, so I was interested in seeing mainstream media offer a sustained look at the issue. I know several people who have suffered from Lyme disease and chronic Lyme, including Jennifer Crystal, a writer and grad student at my graduate school alma mater, Emerson College. I spoke with Jennifer at length when I interviewed her for my book, and I checked in with her in the wake of this recent media coverage.

Even if you haven’t been touched by Lyme personally, Jennifer’s diagnostic journey and her thoughts on ignorance and fear will resonate with anyone who has struggled to receive a correct diagnosis.

1. I know your journey to diagnosis was long and complicated. While I
share the longer version in my book, can you give readers a brief synopsis
of your story? Would you agree it shares similarities with Barbara McLeod’s
Lyme story, which WBUR reported on last week, and which received a lot of interest and feedback?

My story is very similar to Barbara’s, in that we both got sick when
we were young, otherwise energetic and eager professionals, and we
both struggled for too long to maintain that identity while mysterious
symptoms ate away at our lives. Like Barbara, my tick-borne illnesses
went undiagnosed for a long time, and I was repeatedly turned away by
doctors who thought I was stressed, run down or depressed.

I was bitten by a tick in 1997 while working at a summer camp in
Maine, but my waxing and waning flu-like symptoms did not get properly
diagnosed until 2005. By that time the Lyme bacteria, as well as the
co-infections ehrlichia and babesia, had spread to every system of my
body and crossed the blood-brain barrier. I wrestled with severe
physical and neurological symptoms that left me bedridden and unable
to work or care for myself. It took many years of treatment, including
intravenous antibiotics and strong anti-malarial medication, to get me
back on my feet. I am much, much better than I was several years ago,
but I still live with limitations today and still take medication to
help maintain a certain level of health.

2. Much of the current debate centers on chronic Lyme. Again, I know
this is a complicated situation, but can you briefly discuss why you think
there is such resistance to the existence of chronic Lyme from some factions
of the medical establishment?
I think the resistance comes down to two factors: ignorance and fear.

The Infectious Disease Society of America mandates that all cases of
Lyme disease can be treated with 28 days of antibiotics. This is true
for cases that are found and diagnosed right away. However, all too
often, Lyme disease goes undiagnosed and untreated, mistaken for other
conditions like chronic fatigue syndrome, MS, arthritis or lupus. Some
doctors only know to look for a bull’s eye rash, which manifests in
less than 50% of cases of Lyme disease. To make matters worse, Lyme
disease testing is not reliable and not always accurate, so there are
a lot of false negative tests. For these reasons, the Lyme bacteria
can be left to replicate for months or even years, wreaking havoc on
the whole body. Any infection that becomes that severe and systemic
cannot be treated effectively with a short-term course of antibiotics.

Some doctors who may be Lyme literate–ie, who understand the
complexities of the disease and its diagnosis described above–are
fearful of prescribing long-term antibiotics because it goes against
the IDSA rules. They are afraid they might lose their licenses. In CT,
Senator Blumenthal passed a bill that allows Lyme doctors to treat at
their discretion. This was a huge victory for patients who could not
get the treatment they needed; I hope this kind of legislation can be
passed in other states, too (or, even better, that the IDSA guidelines
will be changed).

Most of the arguments I’ve heard against chronic Lyme disease make the
erroneous assumption that cases that have become chronic were caught
right away and treated with a standard course of antibiotics. Herein
lies the problem. Cases become chronic because they go undiagnosed for
too long. Therefore, I think doctors should stop arguing over whether
chronic Lyme exists, and come together to figure out how to better
diagnose Lyme disease at its onset, so that chronic suffering becomes
moot.

3. I’ve seen more news stories about Lyme’s co-infections lately, and I
know you’ve written about those recently, too. What are some the biggest misconceptions about Lyme disease and co-infections you’d like to dispel?

I am so glad to see that Lyme disease awareness is spreading, and am
grateful to WBUR for their week-long coverage of the disease. I’m
especially grateful that they also included co-infections in their
discussions, because we can only win the battle against tick-borne
illnesses if we spread awareness about all of them. Co-infections such
as babesia, erhlichia and bartonella (the first being parasitic, the
second two bacterial) can be transmitted from the same tick that
transmits Lyme disease. They can complicate treatment, and require
different medications than standard Lyme disease. Some patients with
Lyme don’t get better because they are not being treated for the whole
picture. I think it’s imperative that doctors who suspect Lyme in a
patient also test for co-infections. A true Lyme-literate physician
will also be literate in the diagnosis and treatment of co-infections.
I think sometimes these infections are overlooked because they’re
obscure (difficult to pronounce!) and people don’t know much about
them, but that’s a grave mistake.

4. It’s summer, and here in New England the deer tick population is
intense. What are some practical, everyday tips for tick prevention?

The most important thing to do is to make tick checks part of our
daily routine, not just for ourselves, but for our animals, too.
Taking a shower immediately upon coming in from outside is helpful, as
is throwing clothes in the dryer for 20 minutes (ticks can’t survive
the high heat). When hiking or camping, it’s important to wear long
sleeves and light-colored clothing (to make ticks easier to see).
Using bug spray with DEET is helpful, but permethrin is even better.
This synthetic tick-repellent can be sprayed on shoes and clothing.
Stores like REI and LLBean even sell clothes that have already been
treated with permethrin (the insecticide stays active through 6
washes).

Thanks so much, Jennifer. I’m looking forward to sharing more of your story when the book comes out, and to seeing more of your published writing on chronic Lyme and Lyme’s co-infections. Keep up the good work!

If you have experiences with Lyme disease/misdiagnosis or tips to share alongside Jennifer’s, please do!

In the “before” days, I used to say that some women got babies, and I got book deals instead.

And then in an incredible and ironic twist of fortune, I got both—at the same time.

My quip became, my second book and my first baby were due on the same day. The
baby came a little early, the book ended up being a little late, and they both arrived at just the right time.

That’s the short version. The long version is one I couldn’t write until now—until the final final edits were turned in and accepted, until the Table of Contents page was revised again, the book design was agreed upon, and the title was a go.

And, of course, until the regular semester was over, my summer classes had found their groove, and we’d moved out of our house. (Note: we haven’t moved into our new one yet, which is another update altogether.)

But really, it was a version I couldn’t tell until I could finally stop and just be, if even for half an hour. I hate the trite comparison that writing a book is like giving birth to a baby. Having been through both, I can vouch for the insipidness of that saying. Yet I do get stuck on the word “labor.” As in, to work, to toil, to physically strive for something.

Writing a book is not an easy task. Writing a book like my second book, a social history of modern chronic disease, which requires an extensive amount of research, interviews, and synthesis, would never have been easy. But researching it over the course of the past three years and writing it over the course of the past two? Honestly, it’s been grueling. Challenging, wonderful, exciting, and rewarding—absolutely. But finding the physical hours to carve out for it and the mental clarity and headspace to give it what it needed was one of the hardest things I’ve done.

(A quick recap of the past two years: high-risk, medically –intensive pregnancy, newborn/infant with health problems, catastrophic family illness, full-time job, teaching overload on top of that, new business, selling one house and buying another, chronic illnesses, etc., etc.)

I made a promise to myself and to my daughter that none of these other obligations would impact my time with her. I was (and am) fortunate enough to be her primary caregiver and to only use part-time childcare. That means getting everything else done around her, and that flexibility comes with a lot of choices. When you throw a book into this mix, almost everything else—socializing, blogging, sleeping—falls to the wayside.

Getting this book done was active, conscious, deliberate work. I remember setting my alarm for 4:30 am after stumbling into bed after the midnight feeding for almost a whole semester, tip-toeing in the dark past the nursery to my office, where I tried to squeeze into two hours of writing before she woke up and it was feed-play-leave for work time. There were the Thanksgivings, Christmases, Easters, Mother’s Days, and Memorial Days where I stole away with my laptop the minute my daughter went in for a nap or went to bed. Eight pm through midnight became a built-in, automatic part of my workday.

(Side note: I am extremely thankful my daughter sleeps well, and predictably.)

My husband’s new business has him working both weekend days nine months a year, so when he got home late Saturday and Sunday afternoons, we’d trade off, and my workday would begin. We made it work, because that’s what you do when it’s worth it.

For most of this time, I lived in the extremes I thought I’d moved past, the kind of mindset where the only two “sick” days I let myself take were days when my doctor had to ask me, “Are you sure you shouldn’t be in the hospital? I think I should admit you…?”

I lived this way knowing it wasn’t sustainable long-term, and that’s sort of the point. My daughter will only be young once, and I don’t want to miss anything. Time is precious and fleeting as it is, as evidenced by our current state of bike riding, sentence speaking, ladder climbing, number counting, and general big kid-ness.

Getting a deal for a book like this, especially in the current economic climate, is an opportunity for which I am acutely grateful. I had the chance to ask questions I didn’t know the answers to, and was given the time and space to try and figure them out. I had to do that opportunity justice.

Some days, when I was particularly run down, I wondered what it would be like if all of this didn’t happen at the same time, but that was the exhaustion and self-doubt creeping in. It took me longer to finish the book than I anticipated, but the book is much better for that time and space. I wandered down paths I didn’t even know to consider when I started, and those journeys made for a richer discussion.

In the end, I fought. I fought to preserve my time with my daughter, and I fought to get this book done when I often felt pulled in many other directions…because that’s what you do when it’s worth it, and because it’s worth it, there’s no choice then but to do it. Most parents out there can echo that, no matter our disparate circumstances.

I write this not as an apology for my somewhat erratic presence in this space but as an explanation. Many things had to give, and I’m starting to recalibrate things a bit—new posts, new look, new perspective…lots of changes, and more engagement.

But tonight? Tonight I’m going to leave the student papers for the morning, and power down the laptop. For the first time in so long, it’s really a Friday night.

So I’m now a year into this whole balancing motherhood-working-illness thing. I originally planned to write this post, the first in a two-part series, three weeks ago, and yet here I am. There’s a lesson there for anyone tempted enough to write about balance:

It doesn’t really exist.

Reflecting on the whole baby/book/job/illnesses/family illness/new business scenario—and while my particular brand of hectic may differ from yours, the point is, we’re all managing a lot of moving parts—I think it’s more accurate to say that striving to prioritize is much more useful than striving for balance. Something will always have to give, and the real lesson is learning how to be okay with that.

My daughter, my family unit, come first. Whatever else I have going on immediately fall into place behind her needs and what is best for her and by extension, what is best for our family. That priority is at the heart of the
constant negotiations that come a non-traditional full-time work situation (part on campus, part from home). The amount of time I spend with her every day and the flexibility I have to do things with her make up for the challenges involved in squeezing a lot of that work in late at night, early in the morning, and on weekends—without hesitation.

It is worth it, it is indescribably worth it; it is just not easy. But it’s not supposed to be, and I had no expectation that it would be.

It is easy to prioritize when things operate as we assume they will, when we can plan out our schedule and depend on our productivity. Parenting and illness do not subscribe to predictability. The really rough patches, the weeks where nothing goes according to plan and illness throws everything out of whack, have been the most illuminating. Times I am sick and Baby Girl is sick and she needs to go the doctor and I need to go to the doctor and students papers are piling up as quickly as the laundry is and the book revisions are haunting me, when I am worried about her and rocking her and cursing my own stupid infections for making me cough just when her little eyes closed and I startle her awake, are when I have the most clarity:

There will always be papers, and they will eventually get graded. The revisions will get done, just like somehow, some way, the draft got done. The family obligations and illness obligations will settle out. The laundry and the dishes and the editing and the phone calls will all get done. The most important thing I can do, that I will ever do, is be there in this moment, physically and mentally. I kiss her damp forehead and whisper in her ear that there is nowhere else I’d rather be.

I have dropped a lot of balls this year. I have missed deadlines (and quite epically, too), I have canceled plans and forgotten tasks. I’ve made promises I haven’t always been able to keep, I’ve disappointed people who have wanted more from me than I physically give. I’ve climbed the stairs at 11pm with coffee in hand, ready to pull a long night in front of the computer, and I’ve put hot coffee in the refrigerator and creamer in the microwave. At points I’ve moved so far from any sort of balance that it is laughable.

But I’ve learned to be okay with that, because I think that my current lack of balance means I am prioritizing as I should. Right now, what matters most (baby and husband, family, students, book, and oh yeah, my health) depends on me knowing when to pull back from everything else: when to say no, when to put up boundaries, and when to say all I can do is my best and really believe that is good enough.

A long time ago I saw this quote on Penelope Trunk’s blog: One thing at a time. Most important thing first. Start now.I may have even blogged about that line here before. Honestly, I repeat it to myself often, and I find that it’s knowing how to judge what are the most important things and letting go of the white noise that is the key.

While a lot has slipped through the cracks, what I’ve gotten in exchange is incomparable.

(Because I want this space to be more of a priority again, I am holding myself accountable: next up, the second piece in this series about all the pragmatic stuff that helps keep life in motion. A happy baby who sleeps great, an extremely hands-on husband, and a whole group of people who love this child, support this book, and care about my family? That helps!)

This is the time of year when gratitude posts are appropriate. From the evolution of to recognizing the support systems in my life, I have never lacked things to be grateful about./

My relationship with gratitude has never been as simultaneously effortless and complex as it is this year.

Without hesitation, I am utterly, unequivocally grateful for my daughter. She is the greatest joy of my life, and every single day we both acknowledge how fortunate we are that she is in our lives. That she is happy, healthy, and thriving, that we made it through the pregnancy to enjoy the other side? Grateful does not begin to describe what we feel for that.

For the team of doctors, nurses, and nurse practitioners who managed an extremely challenging pregnancy ; the lung doctor who championed our hopes and dreams at every turn and fought for us and our baby; and access to a world-class hospital and top-notch technology literally minutes away—we literally would not have our daughter without those people and that place, and we are so appreciative.

For the relatives and friends who checked in on me diligently and visited during bed rest; made months of tests and hospital visits and relative isolation so much easier with phone calls, texts, and humor; and celebrated in our baby’s arrival and continue to support us in so many ways and share our happiness with her now—we realize how lucky we are to have each of you.

The examples above were so easy to write because so many wonderful things have transpired this year they spill onto the proverbial page.

But as is the way, tough things always seem to happen right at the cusp of great happiness and joy, and this year has been incredibly painful and challenging for loved ones in terms of health crises. For the many tears of joy I’ve shed recently, there have been many, many moments of the opposite. Do

Gratitude is relative. During any kind of medical emergency or acute trauma, it is basic: Please just let this person survive. That’s the only thing that matters. And when morning breaks and you realize your first wish has been met, you exhale a little bit and start to focus on units of time, small changes in status: the next hour, the first words spoken, how many days until heavy equipment is removed. Each little victory is momentous, and each blip or setback is not too crushing because it is better than the alternative you just came far too close to witnessing.

But some days I have trouble with how muddied gratitude and grief become. Of course, the relief and gratitude that the patient is alive and doing pretty well is always there. But there are many losses to process, too; many changes in how we thought life would be, in the dreams we had for the future.

Sometimes I feel like I am cheating on gratitude by indulging in grief or sadness, and the back and forth between happiness/optimism and frustration/anger is tiring.

We are so lucky because it could have been much worse, but that doesn’t mean that where we are is entirely enviable, either. It still happened. I know it doesn’t mean I am not grateful when I think that, but I still feel guilty.

But like we did in survival mode, all we can do is take it day by day. So this year on Thanksgiving I will hold my daughter close and focus on the amazing blessing that she is, and focus on the fact that so many people who love her will be with her that day. We all made it through a lot this year, and for that, I am grateful.

This is the time of year when gratitude posts are appropriate. From the evolution of gluten-free Thanksgivings to recognizing the support systems in my life, I have never lacked things to be grateful about./

My relationship with gratitude has never been as simultaneously effortless and complex as it is this year.

Without hesitation, I am utterly, unequivocally grateful for my daughter. She is the greatest joy of my life, and every single day we both acknowledge how fortunate we are that she is in our lives. That she is happy, healthy, and thriving, that we made it through the pregnancy http://achronicdose.blogspot.com/2010/10/dispatches-from-other-side.html>to enjoy the other side? Grateful does not begin to describe what we feel for that.

For the team of doctors, nurses, and nurse practitioners who managed an extremely challenging pregnancy ; the lung doctor who championed our hopes and dreams at every turn and fought for us and our baby; and access to a world-class hospital and top-notch technology literally minutes away—we literally would not have our daughter without those people and that place, and we are so appreciative.

For the relatives and friends who checked in on me diligently and visited during bed rest; made months of tests and hospital visits and relative isolation so much easier with phone calls, texts, and humor; and celebrated in our baby’s arrival and continue to support us in so many ways and share our happiness with her now—we realize how lucky we are to have each of you.

The examples above were so easy to write because so many wonderful things have transpired this year they spill onto the proverbial page.

But as is the way, tough things always seem to happen right at the cusp of great happiness and joy, and this year has been incredibly painful and challenging for loved ones in terms of health crises. For the many tears of joy I’ve shed recently, there have been many, many moments of the opposite. Do

Gratitude is relative. During any kind of medical emergency or acute trauma, it is basic: Please just let this person survive. That’s the only thing that matters. And when morning breaks and you realize your first wish has been met, you exhale a little bit and start to focus on units of time, small changes in status: the next hour, the first words spoken, how many days until heavy equipment is removed. Each little victory is momentous, and each blip or setback is not too crushing because it is better than the alternative you just came far too close to witnessing.

But some days I have trouble with how muddied gratitude and grief become. Of course, the relief and gratitude that the patient is alive and doing pretty well is always there. But there are many losses to process, too; many changes in how we thought life would be, in the dreams we had for the future.

Sometimes I feel like I am cheating on gratitude by indulging in grief or sadness, and the back and forth between happiness/optimism and frustration/anger is tiring.

We are so lucky because it could have been much worse, but that doesn’t mean that where we are is entirely enviable, either. It still happened. I know it doesn’t mean I am not grateful when I think that, but I still feel guilty.

But like we did in survival mode, all we can do is take it day by day. So this year on Thanksgiving I will hold my daughter close and focus on the amazing blessing that she is, and focus on the fact that so many people who love her will be with her that day. We all made it through a lot this year, and for that, I am grateful.

(Disclaimer: the baby is absolutely fine.)

Medically speaking, something catastrophic happened to someone I love.

I don’t feel it is my place to share the details publicly, but suffice it to say phrases like “ICU” and “ventilator” are not the ones you ever want to associate with people you love.

It is too overwhelming to write about, but also so encompassing I find I can’t write anything in its place, either. So I’ll check back in later, when it is easier to compartmentalize.

Until then, all I can say is if you love someone, make sure you say it. All the time. No matter what else the conversation holds or what else is on your mind.

Because in the moments that teeter between life and death, the moments where you don’t know if hope or despair will come your way, it just might be the only thing that brings any comfort. At least it did for me.

For now, I (and we) will focus on the positive, on the daily progressions and small victories that are in fact momentous. We will focus on the potential for improvement, and focus on what has been spared, not what has been taken away.

But still, in the midst of progress and the slow road to recovery, there is much to grieve.

My heart is heavy.

[Updated to add: heavy yet hopeful.]

I’ve been quiet lately, which is sort of surprising, given how fired up I was in my last post on chronic illness and parenthood. Thank you so much to everyone who commented; your insights on an emotional and sensitive topic were so honest, and started up a worthwhile conversation. I actually have several follow-up posts in various stages of completion, so stay tuned.

This week I can’t quite muster up the right words and phrases to balance out emotion and reason. Partly, I am sick. Partly, I’m adjusting to a new work schedule and deadlines. But more than that, I find writing about any of that feels trivial in comparison to what’s happening elsewhere, particularly Haiti. So much of living with and thinking about chronic illness emphasizes the “chronic” part—the ongoing waxing and waning of symptoms, the long struggles to find balance.

And then something catastrophic happens, and the implications of the word “acute” are crystallized. So I’m doing less writing and more reading. My home state (Massachusetts, which is getting a lot of press given a certain recent election and its implications on health reform) is home to the third-largest Haitian population in the country, but unlike many, I do not have any personal ties.

Instead, my introduction to Haiti came from the pages of one of my favorite books, one I’ve discussed before: Mountains Beyond Mountains. Tracy Kidder’s narrative tale about Dr. Paul Farmer and his transformative work in Haiti with Partners in Health captivated me and so many other readers, and when word broke of the massive earthquake, PIH and the already struggling public health situation in Haiti were some of my first thoughts.

PIH’s Stand With Haiti relief efforthas many opportunities to help, and with over twenty years of experience on the ground in Haiti, the team knows how to prioritize needs. Tracy Kidder’s recent post on the Haiti earthquake is also worth a read.

With aftershocks still threatening and continued delays in getting aid to those who need it, there is still plenty of urgency and many professional and medical organizations mobilizing support.

Daily life continues in our world, and headlines about political upsets dominate, but there are things happening that transcend state and national politics, blog posts full of minutiae, or the Conan-Leno fiasco. Sometimes it’s a matter of humanity.

I have a terrible track record with Christmas: I’m usually sick on the couch, sicker in the ER, or very very sick in an inpatient room.

But not this year. Now that it’s December 24, I can say that without immediately fearing I’ve jinxed myself yet again. What’s more, no one else is (seriously) sick, either. In 29 years, I can’t honestly remember when we’ve all been able to say that.

So for everyone who’s celebrating Christmas, may it be a merry and healthy (as possible) one. Let’s be thankful for the people around us, let’s be extra compassionate to the people who still have to spend Christmas in the hospital, let’s celebrate the new additions at the Christmas table this year, and let’s remember the people who should still be with us with love.

As I was reminded just yesterday, it is the season for hope.

Merry Christmas!