Sometimes when I am driving the last leg home, I am still surprised that this ride, that this life, is mine. Thankfully it is a beautiful, scenic New England drive, full of vibrant leaves, pastoral fields and farms, antique houses, and marshy conservation lands, because it certainly isn’t a short drive. (Thankfully, too, I don’t commute to downtown Boston every day, or at rush hour.)

After I battle the pedestrians and buses and cyclists and congestion of Huntington Avenue all the way out of the city, then the traffic lights, construction, and congestion of my old neighborhood, and start the back roads route home the rest of the way, something in me shifts. I am less tense and anxious. There are fewer traffic lights, more people willing to let me change lanes or turn left, there is lots of sky and trees and the changing of seasons is so distinctive. As I cross from one town into the next, inching closer, I relax. I appreciate the scenery. I don’t care what’s on the radio. If my daughter is with me, we talk about the colors she sees on the trees, or what colors the horses are, or where the moon goes when the sun is up high.

Remember, this is coming from the person who, for fourteen years, has lived in the city or right at the edge, who has never been beyond a few minutes’ walk to coffee, Thai, and public transportation. When I lived in Dublin, I was around the corner from the Guinness Brewery and could smell the hops, and less than then minutes on foot from Trinity College and City Center. When I moved back to Boston from Washington, DC, I lived above a trendy restaurant in the South End, then directly across from the State House in Beacon Hill, then right at the intersection of three of the busiest roads in the city where the Jamaicaway, Rt. 9, and Huntington Ave meet. Even when we were on the outskirts, we were still on the D Line train, and had a commercial area with shops, cafes, and restaurants around the corner.

Admittedly, I was a suburban and exurban snob, and couldn’t imagine being far away from so much. I thrived on the proximity to people and places, and drew energy from the pace around me.

Until I didn’t anymore.

My favorite place in the world, my happy place, if you will, is Cape Cod. Just the thought of it brings up memories of long summer days, lots of cousins and family, time with my grandparents, and a freedom to be just be, instead of being a patient or a student, etc., that never existed like that in any other part of my life. We’d pack up the car for the summer and as soon as we crossed the bridge, I relaxed.

I love the beach and I love summer, but as an adult, my favorite time of year on the Cape is the fall and the very early spring, when the crowds are gone and the view is just as spectacular, if not more so because there is no else clamoring for the view. A short weekend trip or just an overnight gives me peace like nothing else. Even with wi-fi and deadlines and my briefcase and traffic at the bridge every time I am there, I breathe more deeply, I exhale more fully. There is less congestion in every sense of the word, and less pretense. I can’t think of a better way to describe it than that.

To a smaller degree, it’s that same content feeling I notice on my long drive home. We expected a lot of benefits (and challenges and drawbacks) from our move, but this I did not expect. I never thought I was someone who was suited for lots of trees and quiet, dark nights and small-town life. Place had a different meaning.

But somehow, it’s working. Life feels a little less out of control here. And with a lot of very hard, very heavy stuff going on behind the scenes lately, I will take serenity wherever I can find it.

And, in the spirit of new places, my new site, laurieedwardswriter.com, will be up and fully functional in the next day or so. This blog will still exist under this name over on the new site, and this current site will automatically redirect you to the new home for A Chronic Dose and you can still subscribe from there and update your feeds, but the blog will be one branch of a larger site dedicated to my books and my professional identity. It’s more than a much-needed design and function update. It’s taking ownership of a distinction that is fundamentally really important to me: that of a writer who is also a patient, not a patient who writes.

Anyway, I am really excited to move to the new site, and to change up the style, consistency, and frequency of my posts over there. Sometimes the best way to really find a groove again is to start from somewhere totally new.

I can tell that I really am finding a groove again after such a long time—I find myself writing posts in my head while stuck in traffic. I think about essays that I want to write and send out to editors. (I don’t see this happening any time real soon, but the impulse is there. The stories and opening sentences and phrases are there.)

A confession: I have always had an extremely strong aversion to the term self care. Like, shudder. Unless I’m using it in terms of my newly-minted two-year-old and things like her brushing her own teeth, putting on her shoes, and things like that, it’s just never, ever been part of my lexicon.

It’s hard to articulate why, but part of it is that to me, it somehow seems…indulgent. Intellectually I know that’s not true, and that what is self care to one person may seem extravagant to another, and vice versa, and that what self care means to and among patients varies widely, too.

After a whirl wind new baby-more demanding job-family health extravaganza-book due-selling, buying, and renovating-house couple of years, I think I am finally settling out a bit. Even just having the book done and not automatically having to work late every night, or occasionally using my daughter’s weekend naps to do housework instead of just work work has made an enormous difference.

And with some space to actually do things deliberately this fall, instead of just scrambling to stay afloat, I find myself trying to establish new patterns. Like I said, September always feels like a fresh start to me, and that is especially true this fall, as we’re getting used to our new town and new lifestyle. I never knew how much of an impact place would have on me, but more on that later.

(And, speaking of fresh starts and new locations, I’m going to launch whole new site really soon! Stay tuned for details as we tweak final changes…I am really excited!)

I’m going to bed earlier, which for me means striving for 11pm, but it is a start. I actually feel asleep at 10:30 the other night and it felt wonderful. I really miss the awesome gym near where I used to live, but I have found a home workout routine that I can fit into my life realistically and can stick with, and it feels good to have some structure back, especially after a summer of living out of bags and packing and unpacking way too many times.

I’m experimenting a bit with recipes again, and incorporating a lot more high-protein vegetarian meals into our family diet. I’m planning late afternoon adventures most days of the week, and lately, I haven’t stopped to get the coffee on the way to the playground or the farm or the pumpkin patch that I always used to need en route to our various jaunts. (Every time we pass by a Dunkin Donuts, my daughter says “Mama really likes coffee.” Yikes.)

I got my hair cut for the first time in, oh, seven months, last week. “Don’t ever do that again,” said my new stylist. Trust me, I won’t.

For so long, when I couldn’t find a life rhythm, I couldn’t find a writing rhythm, either. There was no place for new words, for reflection, for ideas swirling around and percolating. I much prefer imagining new posts while stopped at red lights to falling asleep at them (because yeah, that happened).

I’m not trying for radical changes, I just want a little bit more balance. If that’s self care, then I guess that is now a part of my lexicon.

So tell me, what sorts of small changes or new habits are you undertaking? What’s one practice or tip you absolutely recommend?

“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.