Pub Date Reflections, Paperback Release, Spring Events, (and More)

Thank goodness it’s April! While winter often felt endless this year, now that it’s finally spring and the illnesses and setbacks are behind us, I realize I need to post some updates about some great events lined up for the next few months.

Incredibly, a year ago today was the official pub date for In the Kingdom of the Sick. I more grateful than ever for the constant support, encouragement, and enthusiasm for the book and the issues it raises, for the press and publicity it received last spring, and the ongoing interest and opportunities to discuss these issues further. The paperback version of In the Kingdom of the Sick is set to pub this July, and I’m looking forward to more events, posts, and activities leading up to that.

On May 3, my friend Cheryl Alkon and I are presenting a session on writing nonfiction/health books at Grub Street’s Muse and the Marketplace literary conference at the Boston Park Plaza Hotel. It’s a wonderful three-day event “designed to give aspiring writers a better understanding about the craft of writing fiction and non-fiction, to prepare them for the changing world of publishing and promotion, and to create opportunities for meaningful networking.” I always wanted to attend when I was in graduate school and just starting to look for an agent, so I am really thrilled to be able to present.

If you’re in the Madison, WI area, I’m participating in a panel on electronic medical records at the University of Wisconsin-Madison on May 9. It is described as “a free public dialogue exploring electronic medical records (EMRs), a rapidly disseminating technology with great potential impact,” and is free and open to the public.

More locally, I’m participating in the “Connected Patient Panel: Exploring the Role of Online Patient Support Communities, Twitter Chats and Patient Advocacy” for the New England Society for Healthcare Communication’s Spring Conference (NESHCO). It’s on Thursday, May 15, 2014 from 12-1 pm at the Mystic Marriott Hotel & Spa, Mystic, CT.

And up next on the personal side? An update on my C25K training and thoughts on why I really like running—even if I am still a struggling novice.

Thanks again for all your support, and for listening despite the unintended silences!

On Running and Breathing (at the same time!)

It has been an extremely cold winter here in Boston (and from the sounds of it, so many places around the country.) Between absolutely frigid temperatures, a lot of snow and ice, and two rounds of viruses that lasted several weeks, I’ve had false starts with the Couch to 5K running program.

Wait, yes, you heard that right. I am attempting to run. On April 26th, my intrepid husband, brother, and some good friends are doing the MS MuckFest 2014 in Devens, MA., a 5k obstacle course in the mud. One of my brothers was diagnosed with multiple sclerosis six years ago, and my husband thought this would be a great way to show our support and would also be a great motivation for us to train together and do something together that is out of our mutual comfort zone together.

(Obligatory if completely sincere plug here: if you’re local and would like to join our team, we’d love the company! If you’d like to donate, you can do that, too.)

Now for some context, I actually really enjoy exercise and, illness and infections pending, I do it regularly. I’ve done years of ellipticals and Stair Masters, and more recently have really enjoyed classes (yoga, Zumba, hip hop, etc.) and home training workouts like Jillian Michaels’ Shred. It’s great for my mind and my stress levels, but pragmatically speaking, it is really important for people with PCD to move around and shake up these lungs of ours—ideally, this helps us cough and clear things out.

I am not at all athletic, but I have fun and I know my muscles are getting stronger, and know that is good for so many things. But I have never, ever been able to run. Ever. My chest tightens and I wheeze fairly quickly, and I get short of breath in a way I don’t in any other activity.

My goal is to be able to run a straight 5K prior to the obstacle course, because that would put me in pretty good shape physically and well, because I have never been able to run and I really want to be able to. Honestly, I am a little scared because for years I’ve told myself I can’t run, so it’s a big shift in thinking. I keep telling myself that lungs are muscles and though it might take longer than it does for other parts of my body to acclimate, and it might take longer than it would for someone without PCD and bronchiectasis, if I just take it step by step I can build up my lung capacity and train myself to breathe better when I run.

From friends and online forums, here are some basic tips I’m keeping in mind:

1. Start gradually—this is why an app like C25K makes a lot of sense to me
2. Breathe through your nose, since it warms the air and is better for your lungs
3. Cover your face in really cold weather, since the cold air effect is much more pronounced

Runners out there, what else would you tell a newbie like myself? And people with chronic illness and in particular, those with respiratory challenges, what helped you conquer the running demon? I appreciate any and all insights you have to offer!

On 2014, and Transitions

I framed last year’s New Year’s post with the notion of the competing forces of joy and sadness, hope and despair, and guilt and acceptance—so often, it seems like the most incredible and most difficult experiences happen at the same time. I knew going into 2013 that it would be an important year in many respects—my book was slated to come out in April and there would be a lot of events around that, I was teaching an especially heavy course load, and more than any of that, we were watching my father deteriorate and hoping he would undergo a kidney transplant in time to save his life.

So while I knew 2013 had the potential to be a big year in many respects, I couldn’t have predicted just how intense it would be—because even the best things can be incredibly draining, and when so many huge, life-altering things happen at the same time, regardless of how positive some of them are, it is still just intense.

I didn’t know I’d watch my father’s life be saved twice, once through an incredible living donor kidney transplant last spring, and just when we thought we could exhale, a completely unexpected triple bypass this fall. I didn’t know both my parents would end up having surgery at the same time and that we’d spend weeks shuttling between different hospitals and rehabs.

I hoped I’d have a lot of publicity for the book, but I couldn’t have predicted that I’d appear on Fresh Air with Terry Gross or publish an Op-Ed on gender and pain in the NYT, goals of mine I never thought were entirely realistic. (And as an example of just how concurrent everything really was, my Op-Ed came out the very same week of the kidney transplant—I picked up my first copy en route to visit my Dad.)

Some of my Boston-area book readings took place the week the Boston Marathon bombing and manhunt took over my beloved city, which was also the last week of classes, and several of my students had been medical volunteers at the finish line and were going through a lot.  All in all, it took me most of the summer to recover from the physically and emotionally punishing schedule (21-hour days were the norm) of the spring.

So personally and professionally, online and offline, it was a huge year, at times breathtaking and humbling in its richness and opportunity, as well as in its fear and in its losses.

I am grateful. I am starting to exhale. Slowly, I am finding my voice again. And after a year of so many big things, I am very much looking forward to a year of focusing on the smaller joys, and being more conscious and deliberate with my time and priorities.

So many things have changed since the beginning of 2013, and above all else, this is what I carry from into 2014: If you are in the right place, doing the things you’re meant to do and surrounded by the right people, everything will eventually work out—one step at a time.

Belated wishes for a happy and healthy new year!

Burnout…(And Finding a Way Back)

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

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

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

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

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

Standing at the Edge of the Universe

It’s been almost three months since I’ve written, an unintended break that’s been weighing on me.

In August, a pretty serious health crisis happened to my father (and only a few months out from a kidney transplant, it was particularly complicated), one we hadn’t seen coming at all.

“It’s like standing at the edge of the universe,” one of his surgeons said to the two of us, referring to what would happen if we didn’t proceed with the major (and risky) surgery. And that one phrase seems to encapsulate the experience of acute, serious illness so well.

Overnight, my siblings and our spouses were whisked out of our daily lives and into waiting rooms and consultation rooms. The waiting, that is the all too familiar part—we have a routine now. We bring iPads and laptops, share phone chargers and delegate “to call” lists for updates. One makes coffee runs, another is responsible for cracking the jokes, another serves as the contact person for the surgeon and the floor. I usually take the pre-op shift so I can lay eyes on him before he is wheeled back; once he’s in recovery, someone else stays on later.

Since my father provides a lot of care for my mother, we split our time between his ICU and step-down floors and doing overnights at her house, and then after she too had surgery, we traded visits between different hospitals, rehab centers and respite care facilities.

More than two months after it all started, both parents are now home together and settling in. Both are recovering well, and have a renewed sense of hope and possibility.

There is much to say about this experience: the amazing opportunities medical science and premium health care offer, the stress of illness on families, how fortunate I felt I had siblings to help dig through the trenches. But for now, all I will say is we’ve pulled back from our perch at the edge of the universe, from the tense, draining unknown.

Things are calmer now, more predictable. I’ve found a groove with my courses, our new schedule, and lots of other changes. I hope to back here more regularly, and back at my usual writing spots like WBUR’s Cognoscenti and Psychology Today.

Thanks for hanging in there through the silence.

Lessons from the Whole30 Challenge (Or, the importance of mindfulness)

Somehow, it’s already August. I always think summer will mean extra time, but with freelancing, summer classes, and adventures with my two-year-old, the weeks have flown by, and the hours are full.

If you read my interview with Dr. T. Colin Campbell, author of Whole, over at WBUR’s Commonhealth, you know nutrition has been on my mind lately. For the past few months, I’ve incorporated a lot more vegetarian meals, eliminated dairy, and really examined what we buy and what our habits are.

And then my husband started doing the Whole30 Challenge—you know, the one that’s all over the Internet these days and often invites comparison to the Paleo diet. In case you’re not familiar, here’s a quick summary: for thirty days, eliminate dairy, gluten, all grains, legumes, sugar (including honey, agave, and alcohol), seed oils, etc. to calm down the inflammation in your body. Basically, you should eat plenty of clean, whole foods–plenty of vegetables, along with protein, fruit, and healthy fats like olive oil, coconut oil, avocado, etc. After the thirty days, can you assess what you’d like to try and introduce back into your diet, and what you’re better off avoiding.

The changes in him were immediate, and not just in terms of weight loss. His congestion and joint pain decreased, and his energy levels increased. We’ve never been huge consumers of processed food (being gluten-free and then also dairy-free makes that hard, anyway) but watching him, I began to see how our choices could be even cleaner and healthier.

With celiac disease and other autoimmune conditions, I am all too familiar with how inflammation can wreak havoc in your life so I jumped on board and did my own Whole30 Challenge, and it’s been a great experience. I’ve lost weight, yes, but more than that, I’ve gained so much energy (I used to drink 6-7 cups of coffee daily, and now, even with the same lack of sleep, I drink one) and I am much more conscious of what foods make me feel good, and which ones simply aren’t worth it.

For example, I know I won’t be re-introducing dairy since I don’t miss it and am less congested without it. I don’t plan on re-introducing rice or corn, but I do think quinoa has an occasional place in the rotation. I’ve discovered nightshade vegetables like tomatoes and eggplant really bother me and aren’t worth it, and gluten makes my husband feel truly horrible.

Kale is our favorite new food, and we some days we have it with all three meals. Since we never bought sweets or desserts I thought I was doing pretty well avoiding sugar, but I now see the many small ways it crept into my diet, like the cane sugar in in my almond milk and in vegetarian soups I often had for lunch. We are both amazed at how much more we enjoy fresh fruit, and crave it in a way we never did. (Interestingly, I just came across this NYT article that makes the case for eating fruit.) Olive oil and a squeeze of fresh lemon taste better than any salad dressing, which usually have some sort of sweetener.

Honestly, the hardest part for me was getting used to drinking black coffee, and while I will try it out with completely unsweetened almond milk, I now know I can drink black coffee and be okay—it took me a long time to acquire that particular taste, admittedly, but I did it, and I feel so much better without adding chemicals or sugar to it. I am not a huge red meat eater (remember, I’ve been vegan for breakfast and lunch and eating mainly vegetarian for dinner), but I’ve been getting a lot of my protein from eggs and fish, and since it’s summer, we’re throwing so much on the grill.

It’s been a great exercise in thinking thoughtfully about choices and paying close attention to what makes our individual bodies run best, and we plan to keep with it.

Have you tried the Whole30 Challenge? What benefits did you notice? Are you doing some sort of modified Paleo diet? What recipes or resources are most helpful?

On Leafy Yards, Summer Play, and Lyme Disease

I am surrounded by ticks.

No, seriously. And I’m not just talking about all the recent media coverage of ticks and Lyme disease, like this New Yorker article on Lyme disease, or the fact that I devoted a chunk of my recent book to Lyme disease, the controversy surrounding the chronic Lyme diagnosis, and the role of social media in this polarization.

There are deer ticks everywhere in my lovely neighborhood sanctuary. I have pulled ticks off my husband’s legs, my daughter’s arms, and have had them crawling across the lens of my glasses. Most of the neighbors on my street have had Lyme disease at least once, and a town social media message board frequently has posts about people getting diagnosed with it, or advice on how to prevent it.

I am so hyper-aware of them that my two-year-old climbed up on my husband’s lap and tilted his head back.

“Daddy, let me check your neck. Ticks really like necks!” she told him. On the bright side, at least I know she is listening and absorbing, right?

We do thorough tick checks as soon as come in and every night. I try to wear long pants or light colors as often as we can, and when she’s wearing dark pants in the grass I tuck them into her socks. I scour her thick blond curls and scalp. We use organic methods of tick control in our yard.

Not everyone who gets bitten by a tick knows it, or gets the telltale bull’s-eye rash. Symptoms of Lyme disease can mimic many other conditions, and there is a lot of debate surrounding the accuracy of the basic Lyme blood test. It feels like it’s everywhere here in New England, yet feels so inscrutable, too.

I am fortunate that we have doctors who have extremely low thresholds for testing for Lyme, and live in a community where it is very much part of the public consciousness. But still, even with information, awareness, and prevention strategies, I feel a little besieged when I step out into our leafy, seemingly peaceful yard. Misdiagnosed and/or untreated Lyme, chronic Lyme, and Lyme’s co-infections are nasty business. I don’t want to run to the doctor every time we have unexplained symptoms like achiness, fatigue, or swelling, but I also don’t want to take chances.

I thought it was a great time to link to the Q&A on chronic Lyme and Lyme’s co-infections I did with my friend, fellow writer, and chronic Lyme patient Jennifer Crystal. It’s definitely worth a read, as is her more recent recap of news coverage over at her blog, Touched By Lyme.

Tell me, readers, do you live in an area with a lot of deer ticks? Is Lyme disease on your mind all the time in these summer months? Have any tips or tricks to share?

Friday Links Round-Up

I have a few new links to share with you.

Jennette Fulda, author of Chocolate & Vicodin, posted a lovely review of In the Kingdom of the Sick. It’s always nice to hear feedback from someone who lives in the kingdom, too.

I took a break from writing about health and science and my newest post over at WBUR’s Cognoscenti is all about education in the digital age.

Lastly, I had the chance to read Whole, Dr. T Colin Campbell’s new book, and interviewed him about the whole food, plant-based diet and disease prevention for WBUR’s Commonhealth. Prevention is incredibly important, but does placing so much emphasis on nutrition as the cause and cure for much of what ails us place unrealistic expectations on those with genetic and/or autoimmune conditions? See what Dr. Campbell has to say, and share your comments or experiences with the WFPB diet over there.

Have a great weekend!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Psychology Today and recent headlines

I am thrilled to have the opportunity to blog at Psychology Today. My first post at my new blog, In the Kingdom of the Sick, is up today. I would love it if you’d click on over, leave a comment, and subscribe to it. I will be posting lots of new content and articles over there, and will not replicate the material that appears here on my personal blog.

I also have a new piece up over at Cognoscenti, WBUR’s Ideas and Opinions page, where I am a regular contributor. It’s all about collaboration between patient and provider, and why participatory medicine is so important. I wrote a lot about this in my new book, and am happy to see it getting mainstream media attention.

Up next here: a book review of My Foreign Cities, a memoir about a woman’s experiences living with her husband’s cystic fibrosis.