Brain Fog

Posted on August 6, 2012 by ledwards

It was just a passing comment, something I didn’t even think about as I said it.

“I’ll take this shift now, so I’m not driving later in the afternoon.”

We were making a 10-hour drive to Virginia, and we usually trade drivers every few hours on long car rides. Late afternoon, from about 3pm-6pm, is my dead zone, so I wanted to avoid being behind the wheel on monotonous highway stretches if I could.

I am not sleepy then, per se, but I am spacey. I turn pale, I can’t focus or concentrate, I start sentences and don’t remember where I am headed with them, I make dumb mistakes and forget things. I miss turns or get lost. Everything simply drains out of me. Sometimes I start the day like that and it doesn’t go away, sometimes it’s hardly noticeable, but it’s always there.

(And it’s not the exhaustion that motherhood and sleep deprivation cause, though I am the first to admit that the intense sleep deprivation I’ve had the past two years juggling parenting, working, and writing a book has made it much, much worse.)

Brain fog. It’s not so incapacitating that I don’t usually just push through it—really, at that time of day, what other choice is there? I’m in the classroom then, or playing with my daughter, or cooking dinner or going to a playdate or having chest PT. I grab a coffee, drink some water, and wait to get my second wind later in the evening.

It is present enough that it automatically factored into our driving schedule, though, and that meant something.

That passing remark was probably the first direct comment about it I’d made in months, if not years, beyond the simple “yes” I reply when my husband looks at my face and says “You’re off, huh?”

Brain fog. Being “off.” It’s not something I talk about on this space, either. Granted, I really haven’t written about illness of any kind these days, but it just is, it is such a part of everyday life.

I am not even positive how I should attribute it: Partially, it could stem from my adrenal system, which has never been the same since my total adrenal failure several years ago. I’ve never really been the same since that happened. The chronic fatigue I’ve had since I was diagnosed in high school is another obvious culprit. Then there’s the whole breathing thing—when I’m wheezy, congested, or too “tight” it can cause me to be drained and spacey, and when I have an active infection, that obviously gets much worse.

It doesn’t really matter which condition contributes which percentage, since none of them are going anywhere. I do know I wasn’t always like this—I had acute flares with chronic fatigue, of course, but I wasn’t always this dependably and overwhelmingly out of it on a regular basis. It has crept up on me incrementally, and that small conversation about driving really made me step back and think about how long it has been.

So, brain fog. Lots of you have it, lots of conditions and medications can cause it. How does it affect your daily life? What accommodations do you make for it? And any tips beyond guzzling coffee?

Home

Posted on August 3, 2012 by ledwards

It’s been quiet around here, quieter than I’d planned but so much of this summer has not exactly gone according to plan, so I’m trying to roll with that.

Since we last spoke about Lyme disease and its co-infections, we’ve had weeks of renovations, moving, unpacking, some health crises, etc., but we’re finally getting settled.

There is a whole lot of “new”—new town, new house, new physical therapist, new job responsibilities, and more, right now.

But in spite of the long (hot) hours working on the house, the juggling, and the overall upheaval of the past couple months, it’s beginning to feel like home. My office is unpacked, and my desk overlooks a window with a stream of sunshine and a rather bucolic view. My daughter knows where all her toys and books belong, and loves her yard and her porch. “Hello, new house!” she exclaims when we pull into the neeighborhood. “Goodbye new house! Goodbye flowers and trees and water table!” she calls merrily when we leave.

And it feels like more than simply new; it feels like the beginning of something better. There is a lot say about that, and about getting a new physical therapist, and about juggling work and illness, and about parenting an almost-two-year-old, and so much other stuff.

(And I just got my copy edits on my manuscript back—I have an ISBN, people. This is getting real!)

Now that my physical space is sorted a bit, I’m finding my mental space is realigning too, and I can better focus on this virtual space. I’m working on a bunch of posts, and more long-term, working on a new look and feel.

For a long time, I’ve struggled to regain my rhythm. Life needed a reset button, and I think I found it.

Have a great weekend!

Chronic Lyme and Co-Infections Q&A

Posted on July 2, 2012 by ledwards

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!

On Books and Babies (Again)

Posted on June 23, 2012 by ledwards

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.

Gifts, Not Wars

Posted on May 28, 2012 by ledwards

So I am way late in writing about the now-infamous Time cover story “Are You Mom Enough?”

I’ve read lots of responses to it, including this thoughtful Boston.com blog post, but every time I tried to compose a post, life (work, infection, moving,) and, well, mothering, pulled me away. So here it is, 3:30 am, and I just finished up some work and can begin drafting my thoughts.

More than anything else, my initial reaction after reading the article on Dr. Sears and attachment parenting (and the extreme some parents can take it to) was to ask, who cares? I’m not being glib here. I am too busy getting through the day and doing the best I can for my kid and for everyone and everything else in my life to care what other mothers and families are doing. Formula or breast milk? None of my business. Pacifiers or thumb sucking? Again, not my call. What’s it to me if you co-sleep or Ferberize or Baby Whisper your way through the night? I’ve got my own sleep to worry about. I have my preferences and my data and evidence for my own decisions, and a pediatrician I trust to discuss things with, but my choices don’t need to be yours.

Before my daughter was born, I read Dr. Sears’s Baby Book. And I read What To Expect the First Year, and the American Academy of Pediatrics’ Caring For Your Child, Birth-5 Years. I read books on breastfeeding and sleep habits and baby-food making. I bought a baby carrier and pacifiers and washed the sheets for the hand-me-down bassinet.

And you know what? Then I had my daughter, and I quickly realized the best information about raising her came from her, that if we paid attention to her cues and adapted as her needs changes and listened to our instincts, we’d figure it all out.

Turns out she hardly used the bassinet because her reflux and other health problems meant she needed to be upright. Turns out she loved napping with her head on my chest and her legs tucked up under her, and that the old adage I’d read was true: Babies don’t keep, so hold them as often as you can. Focus on the moment.

Turns out she loved her pacifiers but gave them up without much fuss. Turns out she didn’t really need that 4am feed and just wanted to hang out, and that sleeping through the night came naturally for her when she wasn’t waking up to socialize. Turns out she didn’t use that baby carrier nearly as much as she did in my pregnancy daydreams because even as a tiny infant, she always wanted to be upright and on the move. Turns out my husband was right, a baby food maker is unnecessary if you have a couple of pots, a blender, and the desire.

Turns out the world didn’t end and I didn’t feel any less bonded when I had to stop breastfeeding at six months (this, after eliminating dairy, soy, and eggs; after lactation consults and digital scales and hospital grade pumps; after mastitis and supply issues and multiple supplements every day and Oh My God I am spending far too much time pumping for so few ounces when I could be spending time with my baby!) Plenty of other mothers nurse much longer, and some never do, and we’re all doing the best we can with the variables we have. The learning curve of motherhood is steep enough.

So why does this idea of “mommy wars” persist? Jenn at What The Blog?, wrote, “Mommy wars aren’t created by magazine covers. They’re created by moms who doubt their own choices then attack others who are different just because they’re threatened by self doubt. Mommy wars aren’t against each other. They’re against ourselves, and that’s why no one ever wins.”

To an extent, I agree with this. With some time and distance to move past my immediate reactions to this dialogue, and as I watch my daughter grow into more of an independent little person every day, it occurs to me that parenting is an opportunity not to be better than, but simply to bebetter: better versions of ourselves, because our children notice everything we do, because just as we take cues from them, they take so many cues from us.

If we want our children to be compassionate, to be open-minded, to be the ones who stand up for the misfit on the playground or speak respectfully to elders, that starts with how they see us treating others, speaking to and about others, and speaking to and treatingthem. If we want them to have confidence in themselves and in their ability to make decisions and act independently, then we need to model that confidence in our choices—our parenting choices, our work choices, our lifestyle choices.

Maggie May at Flux Capacitor writes, “We are given this gift in our children, the gift to be stewards of the making of their brains and souls and bodies. We are watching a supernova be born, we are watching something as breathtaking and fragile and combustible and miraculous and beautiful as a star being born in the few first years of our children’s lives.”

I am not a patient person, not naturally inclined to be carefree or completely engaged in the present. When I am with my daughter, those things come much more easily. That is a gift she gives me.

In some ways, I am in a little mothering bubble—not quite a SAHM but with an unconventional schedule that allows me lots of time with my daughter, and despite a full course load and teaching overload plus a writing career, not a traditional working mother, either. It’s hard to find a real sense of community when you straddle different worlds (a longer post on this is coming), but it also insulates me a bit from whatever competition or judging might go on (mostly).

But what I’ve taken from the newborn classes and infant music sessions and the playgrounds and library storytimes is this:

Look for the mothers who, despite the blowout diapers and missed naps and toddler meltdowns, despite the lack of sleep or downtime and the stress of the daily grind that motherhood entails, have joy. Joy in their children, joy in the visceral, physical act of parenting. I’ve seen them, I’ve witnessed their ease and confidence and comfort in their own mothering skin, and I’ve learned from them. Whatever Mommy Wars might be going on don’t seem to touch them. That is a gift they give to their children.

Changing Spaces

Posted on May 16, 2012 by ledwards

It’s been an intense spring, one marked by necessary cuts. Some are exciting and liberating and others are more raw, but all are ultimately for the better.

Like many of you, I suspect, I often write and blog to process, to work through decisions and reflect on experiences that have already happened. A couple of months ago, when I wrote this post that started as a rumination on the writing and editing process, it really did begin with writing itself, and slowly stretched to ideas about living with illness. Still, it was primarily retrospective.

But I thought about the idea of “necessary cuts” constantly after I posted, and a couple days later, I had a life-altering epiphany. The writing informed the decision, not vice versa.

We should sell our house and move.

A few weeks after that moment of clarity, our house was thoroughly scrubbed, streamlined, and staged, and went on the market. We scoured neighborhoods in new places, comparing schools and commutes and spaces, and driving by listings. Just a couple of weeks later, our house was under agreement, and a few weeks after that, we signed an offer on a house in a much different place.

For the past four and a half years this has been a wonderful home. It’s got character and a good layout, and is in an active area with many urban amenities: public transit, coffee shops and restaurants and playgrounds in walking distance, proximity to highways and hospitals and so much else. Yet many of the things that were attractive to us then don’t necessarily reflect our reality now. Just as suddenly as we fell in love with this place (and it was immediate—we weren’t even looking for a new house), we knew it was time to move on.

For the first time since I was eighteen, I can see myself living somewhere where espresso, Thai food, and the subway are not within steps of my door. There are many reasons to leave that make sense to us, just as there were many reasons to live here when we bought it. But this house, as much as we love it, and the lifestyle this house represents, simply aren’t the right fit for us anymore.

It’s a necessary cut, indeed.

We held our breath a lot in this house, and did a lot of hedging. We were drawn in by the spacious, quirky bedrooms, eyeing the sunny front bedroom as a possible nursery someday, yet in the same breath we told the then-sellers to take their swing set with them because we knew there was a real chance we’d never have a child to push on those swings.

We are living in the after, not the “if,” and we have a lot more clarity in terms of what we want, but more than that, what we need.

Beyond concrete items like the walk-in closet or the updated kitchen, there are many things I will miss about this house. It was where neighbors became friends. It was where a business was launched over tamales and margaritas with friends, and where Supper Clubs were held well into the night. It was the home where an idea for a second book took root, and where, over several years, the stack of books and articles somehow became a cohesive narrative. It was where we hosted Thanksgivings and cook-outs and sleepovers with nieces. Its closeness to Longwood Medical Area meant it served as a home base and staging ground whenever my loved ones (or me) were in the hospital (which was far too often, really. Really.)

Our bedroom is where I closed the door and cried quietly month after month (after month), and my home office is where I got the call that finally brought happy tears after so many years. The sunny front bedroom is where we painted the walls a gorgeous pale blue/aqua color because we wanted our little girl to have something other than pink, and on whose walls we stenciled the words “Dream. Hope. Believe,” scarcely believing this was in fact our reality.

The sunshine that streams through the living room window every afternoon was my constant companion during weeks of bedrest, and the hustle and bustle of cars, trucks, and neighbors connected me to the world outside those four walls. The front door was covered in balloons and Welcome Home signs when we brought our baby home from the hospital, and the hardwood floors and living room rug are where she crawled and walked for the first time.

We’ve had so much joy here, and so much tough stuff along with that joy. Things fell apart and stitched themselves back together—not seamless, but stronger nonetheless.

In a few weeks, we’re off to someplace much different. More land, more green, more (mental and physical) space to exhale. I did not realize how much I was still holding my breath, until I wasn’t anymore. We’re sad to leave the house was truly a home, but we’re even more excited for a better fit, a better life for all of us.

Dream. Hope. Believe.

Mother’s Day 2012

Posted on May 14, 2012 by ledwards

I’ve been pretty quiet lately. I have some updates I’ll post later this week, but today seemed like a great day to look at (Weekly) Grace in Small Things.

–My husband had to work today, so it was just my daughter and me. We did our usual morning eat-play-dress routine, and as we headed out to go to church and to do some visiting, the sun broke through the clouds and “My Girl” came on the radio. What more could a Mama ask for on Mother’s Day, really?

–Every stage is so much fun, but I particularly love the constant narration of daily activity phase we’re in right now. “I did it!” she says, standing up with a huge grin on her face after she completes a task. “All done now. Bye-bye!” she says, shoving her plate of food away from her. “I’m all set,” she says as she’s buckled into her car seat.

–Watching my daughter and all of her grandparents interact and seeing how much they love each other is great to witness. One of my favorite little things? When my daughter walks over to me with the phone in her hand, hits speaker and re-dial, and calls my mother to ask her to sing “Ba Ba Black Sheep.” Asking her who loves her and hearing her say their names? Amazing.

–I want my daughter to feel like part of a pack and that she is loved by and connected to more than just her father and me. She loves her eight cousins and when she asks for them by name, it takes me down the road a few years to sleepovers and bike rides and those all-important bonds you have with the people who have known you your entire life. She woke up and asked to call some of her cousins today. While I wouldn’t oblige her since it was 6:30am, it did make me smile.

–Lately, she likes to take both my cheeks in her hands and kiss my face noisily and earnestly. It makes me laugh, which makes her squeal with laughter and eggs her on, which makes her lean in and kiss me again with even more exaggeration, which makes both of us laugh harder. We just went through several rounds of this before bedtime. It doesn’t do much to settle her down, admittedly, but it’s hilarious and I know she’ll move on to something else soon enough; I don’t need to rush that.

Nineteen months into this, I still can’t believe I get to be someone’s mother, that I get to be her mother. She lights up corners of our world we didn’t even know existed.

Happy Mother’s Day to all the women who love, nurture, guide, and advocate for children out there.

(And, back to regularly scheduled posts this week. Promise.)

A Big Life

Posted on April 16, 2012 by ledwards

The last conversation we had with my grandmother began like this:

“It’s Easter! Have you eaten yet for the holiday?” We had to strain to hear her through the oxygen mask over her face, but she was not deterred by that, or by the extreme stress her heart and lungs were under.

If you knew my Nana, you would not be surprised this was the first thing she said when she opened her eyes and saw us gathered around her hospital bed. The consummate Italian cook and family matriarch, she considered feeding her family the ultimate act of love, of physical and emotional nourishment.

To say her death at 92 was truly a shock is a testament to the indomitable force of nature she was, a feisty, active, sharp, loving, funny, tenacious, and hardworking woman until the very end. If you knew my Nana, you knew how relentless she could be in pursuit of what she believed, how dogged she could be in her role as devoted wife, mother, grandmother, or great-grandmother. Your shoulders would shake with laughter and your eyes would tear a bit as you recounted her latest wild escapade, or heard the most recent “Nana-ism.”

A force of nature, indeed.

Those of us who know her have all these stories, we catalog them and re-tell them and they are our buffer from the reality of grief, our collective place to land. As one writer likened it, they are our pockets full of gold.

So while I keep them preserved among those who know them and know her best, here’s what I know.

I know she lived, as my husband said, a big life—one filled with sacrifice and sorrow, unquestionably, but one filled with so many relationships, so much love and grace.

I know from every handwritten note or pot of tomato sauce, from every Rosary she prayed for us, or wacky Christmas gift we received, that we were loved. I also know she knew how much she was loved by her family.

We ended every phone call with “I love you.” Two days before she died, I got to hear my daughter say “I love you, Nana” and got to see my Nana’s reaction to it. I know that makes me incredibly fortunate.

The last interaction we had while she was awake was when I held her hand and then kissed it. No words were exchanged in that moment, but she felt it, and it said everything we needed it to.

I know I miss her already.

I know that when I shake my head, smiling, and use the word “relentless” in relation to my daughter’s quest for whatever object or task she is focused on, that I am seeing shades of my grandmother in her.

I know that what I want for our daughter is a big life, too.

On Technology and the Patient with Chronic Illness

Posted on March 12, 2012 by ledwards

While saving a podcast I created for my students the other day, I inadvertently clicked on another item in my iTunes folder: my daughter’s first cry, recorded with my husband’s iPhone the moment she was born.

Momentarily overwhelmed with emotion, I scrolled through until I found another amazing entry: the sound of her hiccupping in utero, recorded with my iPhone during one of the many non-stress tests I had during my pregnancy. You hear the whoosh and thump of her heartbeat, and then every few seconds, you hear this unmistakable blip that is a hiccup.

An entry from a few months later makes my body clench: the horrifying sound of her struggling to breathe, rasping and gasping and choking and wheezing, when she was quite sick as a young infant. I played it for her new specialist so he could see what I meant when I talked about how much she struggled at night and while eating.

He nodded, playing it over several times, and sharing it with the fellow on his rotation. “I am so glad you recorded this,” he said to me, relaying any private fears of mine I’d look like some overly paranoid first-time mother. It was the first step in accurately identifying some of her health problems and getting her the right treatment.

My smart phone is just one of many ways technology has changed my experience of being a patient, being a pregnant patient, and being the mother of a patient. I get text messages from my pharmacy when it’s time to refill my prescription, and can accomplish more over brief e-mail exchanges with my own specialist than I do in some office visits. The patient health management platform my hospital uses has all lab results, imaging, results letters, and medical history available with a few clicks on a password-protected site.

I’ve written here before how social media is an important—and often, the only—source for connecting with other rare disease patients, people who can provide the anecdotal information on treatments and best practices that can make such a difference, information that we can use to have conversations with our physicians. It’s another form of data, and in the digital world of health information, data matters more and more.

I’ve been writing and researching in a lot more depth the way technology and social media have influenced patient-hood, and I know this post is just a snapshot glimpse of the many, many types of application. But as someone immersed in the research and the statistics, what I would really love to hear more about are the everyday experiences people have.

So tell me, how do you use technology to manage illness? How have technology and social media influenced your experiences as a patient? How you advocate for yourself or find information?

Weekly Grace 4

Posted on March 10, 2012 by ledwards

I had big plans for Spring Break—fun activities and play dates with my daughter, final round revisions, finishing the drafts of multiple blog posts, spring cleaning, etc. Instead, the week of Spring Break became known as the second week of the Late Winter Plague in these parts, with Baby Girl getting hit the hardest and the longest, so plans changed a little. While I catch my breath and catch up on life a bit, a quick nod to (Weekly) Grace in Small Things.

1. I don’t like the reason why my sick little girl was so sad and needed so many extra cuddles the past couple weeks, but I am very grateful that I could be there to give them to her when she needed me. This unorthodox schedule I keep has some challenges, but the benefits? Priceless. Truly.

2. A pediatrics group who not only responds to calls quickly and books in appointments on the spot but also has nurses and nurse practitioners who call on their own first thing in the morning and just before leaving at night just to check in on Baby Girl because they are thinking of her.

3. Longer days and mild weather, which brightens my mood and reminds me of all the playground and play time possibilities that await us this spring.

4. A Friday night off from any true work, which means time for putting laundry away, blogging, and perhaps even reading a book for pleasure (gasp!). It’s been way too many months since I had one of these nights.

5. I spend so much time commenting on writing and doing so much writing and revising on my own that I have been a bit of a slacker in terms of posting. But I am always reading, and figure it’s worth a shout-out to some of the blogs I frequent these days: