Thursday, December 31, 2009

Looking Back, Looking Forward: 2010

There are so many good year-in-review and decade-in-review memes out there already so while I won’t be joining in on them, I can’t let 2009 slip by without some commentary on it.

In my little corner of the universe, 2009 definitely had its high points: I signed a deal for my second book during a very tough economic spell, I met Bill Clinton and chatted about health care reform, and I pursued new academic and freelance opportunities. I am incredibly grateful for all of these experiences.

I thought and wrote a lot about hope this year, a word that is as closely related to these high notes in my life as it is to the low ones. In fact, I’d argue that when I felt fragmented and run down or when I was disappointed, when all I could do was focus on just making it work, hope was even more important.

I’m not into making resolutions this year. I’d rather take what I’ve learned from 2009 and apply it to 2010. Despite some really great developments, 2009 was a long, tough year, a year that pitted my strengths against my weaknesses in a major way. I am a planner and a control freak, and the more crazy life (and health) gets, my tendency is to push back even harder. I had a ton of pressure on me this year, and so much of what I needed to do hinged on me being able to control the one thing I can never fully control: my health.

In a much broader way, I think 2009 was a year that challenged so many of us on that front, healthy or otherwise: sometimes we can do our very best but other factors can dictate so much of our success or failure.

It is one thing to say that having hope is important, but it is another to be truly willing to accept things that are out of your control, to have hope things will work out even if in the moment, you can’t see how or when. That is the hard part for me, anyway.

When I think about the past year and the past decade, I have to admit that some of the most important and life-changing developments were ones I never planned for, never even knew to look for: meeting my husband (six years ago tonight, actually); getting my MFA, meeting the friends in college, graduate school, and beyond who mean so much and who feel like family; starting this blog; etc.

There are many more examples like this, but the point is, sometimes you just have to be open to chance and possibility. All the planning in the world does not guarantee we will get what it is we think we want, and sometimes we don’t know what we want or need until we find it. At points this year I think I was so bogged down in surviving that I lost sight of the importance of the unexpected, that sometimes hope means trusting in what we cannot yet envision.

In this post, I reflected on the idea that a person needs three things: someone to love, something to do, and something to hope for. This is what I want to carry with me into 2010, and into the next decade.

Have a wonderful (and safe) New Year’s, and may 2010 bring you as much health and peace as possible.

Thank you for reading.

Thursday, December 24, 2009

Making it to Christmas

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!

Friday, December 18, 2009

Books Make Great Gifts, Part 2: Personal Picks

So I can’t very well remind you that books make great gifts without giving you some recommended reading.

In an effort to expedite this post, and therefore expedite any remaining holiday gift purchases, this year I’m calling my list “Off the Top of My Head,” with the somewhat lame yet totally true claim that if I can remember a title at 10 o’clock on a Friday night after a long day, a long week, and a year full of reading and researching, it must be a memorable read.


(I’m still so fond of the book picks I suggested last year, so give them a second look if you’re interested. I think Abigail Thomas’s A Three Dog Life is one of the most exquisitely written memoirs I’ve ever had the pleasure of reading.)

Nonfiction (memoir, narrative, food, and health):
The Liar’s Club by Mary Carr
Truth and Beauty by Ann Patchett
Atlas of the Human Heart by Ariel Gore
Under the Banner of Heaven by Jon Krakauer
Word Freak by Stefan Fatsis
The Journalist and the Murderer by Janet Malcolm
Reading Lolita in Tehran by Azar Nafisi
In Defense of Food by Michael Pollan
It Must Have Been Something I Ate by Jeffrey Steingarten
Overtreated by Shannon Brownlee
Encounters with the Invisible by Dorothy Wall
Breathing for a Living by Laura Rothenberg
The Autoimmune Epidemic by Donna Jackson Nakazawa
Blood and Guts by Roy Porter
Keep Working, Girlfriend by Rosalind Joffe

Unaccustomed Earth by Jhumpa Lahiri
The Man of My Dreams by Curtis Sittenfeld
Best Friends by Martha Moody
Handle With Care by Jodi Picoult
Certain Girls by Jennifer Weiner
Something Borrowed by Emily Giffin
Dirty Girls’ Social Club by Alisa Valdes-Rodriguez
Olive Kittredge by Elizabeth Strout
White Teeth by Zadie Smith
The Year of Fog by Michelle Richmond
Commencement by J. Courtney Sullivan
The God of Small Things by Arundhati Roy

I’ll probably think of a lot more tomorrow, but I think that’s a wrap for now. As always, please chime in with more suggestions, or feedback on any of the books mentioned above!

Happy shopping…(and don’t forget: whenever possible, support local independent bookstores!)

Thursday, December 17, 2009

Thyoliday Blues and Truths

Thyroid diseases and thyroid cancers are fun, right? Unfortunately not; they deeply affect us as patients and our families, indelibly leaving an imprint on our minds, bodies and souls. None of it is easy. If we’re going to bring awareness to this disease, we have to come together as a family. Our collective voices have the power to invoke change. Because the holidays are a time of celebration with the people we love and a time to reflect, what better way to ignite change, and move our stories forward, oh and have a laugh along the way, than to connect with each other?

Have the holidays and your experience of them changed since you've been diagnosed?
Yes! In addition to thyroid disease, I have celiac disease, primary ciliary dyskinesia (a progressive, rare genetic lung condition), bronchiectasis (another lung disease), and other odds and ends. I’ve been sick since birth, but was not diagnosed accurately with most of these conditions until my early twenties. I used to spend weeks in the hospital every year, and spent several Christmases in a row in the hospital, including one Christmas Eve being transported from my hometown hospital to my large city hospital in an ambulance.

Now that I know what I’m dealing with and have different treatments, I’m not in the hospital as much. I’m still usually sick at Christmas, but I’m at home when I am!

What is your favorite holiday food/dish from childhood? What is your favorite dish now? (Did you have to change your diet at all since being diagnosed?)
We used to have a big Italian feast with our extended family on Christmas Eve, and I loved my Nana’s baked stuff shrimp and my mother’s chicken parmesan. I was actually diagnosed with celiac disease right before Christmas one year, so that first holiday was tough but since then we’ve all adjusted. I bring a risotto dish that is now a crowd favorite, and there is always a protein cooked separately (and with no cross-contamination) for me. I appreciate the effort people make for me, and I like that I’ve introduced them to new foods they enjoy.

Off the top of your head, is there one comment from friends or family that sticks out in your mind as a what-were-they-thinking kind of thing that brought your disease front and center for everyone at the holiday function to hear about?
Not really. Sometimes there is still some confusion about what is/isn’t gluten-free, but it’s never anything malicious—usually just someone telling me I can’t eat potatoes or rice when I can. There is a lot of serious illness in my family (and a lot of thyroid disease, too), actually, so we’re all sort of used to it. We just avoid asking, “How are you feeling?” at holidays.

How do you get through the stress of the holidays, paired with a disease? What are your coping strategies?
It’s such a busy, germy, chaotic time of year that I am usually sicker to begin with, so I need to keep those factors in mind and just pace myself. I do a lot of shopping online so I don’t have to be out in the crowds, and I make lists so that when I have the energy, I know exactly what I need to do and buy.

Do you feel the need to enlighten and educate your loved ones about your disease when you get together for holidays, as people are often curious about our illnesses? If so, how do you educate them?
Sometimes, yes. As I mentioned, the food issues can confuse people. My immediate family understands my other conditions well, but when you have very rare diseases, there is always a lot of education involved. People who don’t see me day to day might not understand how quickly I can go from okay to pretty sick, or just how many weeks an infection can linger. Conversely, sometimes I have a terrible-sounding cough but actually feel pretty good, and that can be confusing, too, I think.

Has your disease ever showed up at the wrong time on a holiday and ruined the day or moment?
Yes! Christmas as an inpatient (or in an ER isolation room, or an ambulance) tends to have a dampening effect…

Have you thought about submitting a letter to Dear Thyroid? If so, would your letter be a love letter or a hate letter? Would it be to your thyroid or from your thyroid?
It wouldn’t be a hate letter…more a letter of mutual understanding: I’ll do what I can for you, my slow-moving thyroid, and you keep doing your best for me.

If you could tell the world one thing about thyroid disease (or thyroid cancer) that you feel they don’t understand, what would it be?
It can be really difficult to diagnose—I think people think if one baseline blood test comes back “normal” the case is closed. Not true! I also don’t think people realize just how much the thyroid is responsible for, and how completely out of whack your body can be if your levels are not correct.

What is the greatest misconception regarding thyroid disease and thyroid cancer?
I think people sometimes consider thyroid disease a quick fix—you take the test, pop a pill, and that’s it. Now, while I like the fact that of all my conditions this is one where I can actually take a pill and it makes a big difference, it isn’t that simple. Patients need to monitor and maintain their dosages, and lots of things (other medications, certain foods, etc) can interfere with the correct dose.

What is the stupidest thing someone has said to you regarding your illness that, to this day, still makes you laugh or makes you angry?
I’ve had doctors tell me that my lungs are bad because I’m stressed out or not taking my asthma medication (um, no, probably it’s because of the two progressive lung diseases, neither of which is asthma, but thanks!). I’ve also had people say really rude things about people with chronic illness in front of me, without knowing my situation: people who are sick shouldn’t have children, they would never marry someone who was sick, etc. Awkward! I usually just fume about it with my husband later.

Dear Thyroid is a literary thyroid support community and blog. Thyroid patients are invited to submit Dear Thyroid letters; love letters and hate letters, among other thyroid literary things, such as Thyrants, Thygraphs, Thykus, Thyetry and Thysongs, etc. Our goals are for all of us as a community of patients to connect with each other and our diseases, and to bring awareness to thyroid diseases and thyroid cancers, we need and deserve a face and a voice. For our non-literary crew, we have monthly Flickr pools. Recently, we launched Dear Thyroid Local Meet Ups for offline support. Dear Thyroid Forums are forthcoming in December.

Wednesday, December 16, 2009

What Better Gift Than a Good Book?

Last night at my writing group, a friend asked what we would do if Christmas was a time where we had permission to buy what we really want for ourselves. What, she queried, would we buy?

“Books,” I replied, without a second’s hesitation. Literally, it was the first thing that flew out of my mouth.

And it’s true, though with a caveat. I’d also like time, time to wander through my local independent bookstores. I’d linger over the new nonfiction titles and the paperback originals, I’d wander past the front-of-store displays and hit the aisles, looking for new names and titles.

(I’d also check out the health section to see Life Disrupted, because I’ll be honest, the thrill of seeing it is still there, and I’d try to guess what shelf will someday house Book #2 .)

I’d buy more narrative medicine books, and the engrossing narrative nonfiction titles I love so much. I’d select the breezy, snarky novels I can tear through in an hour, and the literary fiction books I re-read over and over before I go to sleep at night.

And then once I had as many books as I could carry by myself, I’d hunker down with my dogs and the afghan my grandmother (the most avid reader I've known) knitted for me, and I’d do nothing but read. No Internet. No clients. No writing. Just time to savor other people’s writing.

So consider this ode to books (and bookstores) a friendly holiday reminder that books make wonderful gifts. Last year, I gave you some personal picks and Best-of lists to consider, and for those of you who haven’t purchased all your presents yet, I thought I’d do so again.

NPR’s Best Books of 2009 is an extensive and eclectic resource, and it includes the Top Picks From Indie Booksellers.

I got my MFA in Nonfiction Writing and am a self-avowed nonfiction junkie, so I was excited to see Salon’s Salon’s Best Nonfiction Books of 2009. Still, I often need a break from true stories, so Salon’s Best Fiction of 2009 was another must-read.

The Wall Street Journal's Best Health Books of 2009 is another great list to consider.

As for my own list? I’ll own it: end of term grades, client work, research detours, looming word counts, and Christmas-related chaos have all conspired to slow me down, but I’m working on it, and will try to post it soon.

(Don’t forget Life Disrupted is an affordable gift for anyone you know living with chronic illness, or anyone trying to understand what their friends/family members are going through. Okay, obligatory holiday plug finished.)

Do you have any fiction or nonfiction titles you recommend? I’d love to hear them, especially since I haven’t started my holiday shopping yet!


Sunday, December 06, 2009

Learning To Be a Primary Care Patient

I do not subscribe to the saying, “There’s no such thing as a stupid question.”

There are many, many stupid questions. So opposed am I to the asking of stupid (by which I really mean unnecessary) questions that I go out of my way to acknowledge that a really good question is just that when I hear one. It’s a delicate balance, being accessible and approachable and trying to instill independent thought and accountability at the same time.

Asking to clarify a particular point in an assignment prompt? Totally valid question, and likely a question others have, too. Asking when that assignment is due, when that information has been available in four places, hard copy and electronic, for weeks? Less valid.

You might wonder what any of this has to do with primary care (though I did just have a long conversation about the culture of instant gratification and unwillingness to dig around for answers when it is so easy to text or e-mail someone to do it for you with a pediatric nurse practitioner in primary care, and she had a lot to say…)

I digress.

No, this post isn’t about the downsides of technology, or the ramifications of all kinds of information, vetted or not, being available with little effort on our parts. It’s about what happens when a rare disease patient enters primary care:

She asks stupid questions.

Guilty as charged. (See? Aren’t you glad I didn’t totally jump on my soapbox earlier?)

After years of floating between specialists, I love having a primary care doctor. More than that, I really like my specific doctor, and his whole group, and I love that my primary care doc and all my other specialists are all in communication with each other.

But I’m still learning how to be a primary care patient. I’m used to disasters and calamities; I’m used to avoiding the hospital merely because I already have all the equipment at home. So this week, when I had some progressively painful jaw symptoms that were likely something very minor, I was hesitant to make an appointment. However, with several dozen ear and sinus surgeries, a major mastoid surgery, and infections that have impacted my jaw bone several times under my belt, it seemed worth checking out.

The earliest appointment was two weeks away, or I could make an appointment in urgent care. I hung up without making an appointment, because this wasn’t urgent, and I didn’t want to take up an appointment slot when they are acutely ill patients out there. It is H1N1 season, after all.

I was told by several people I was over-thinking the term “urgent.” So I e-mailed my doctor, cringing at the knowledge I was now flooding someone’s inbox with a stupid question (remember, guilty as charged): should I just wait the two weeks, or make the appointment?

“Urgent” is all relative to me, to all patients with chronic or rare diseases. To me, it’s how much blood I am coughing up that makes me consider contacting my doctor, not blood itself. It’s how much lower my peak flows are, not just that they’re scary low, or how erratic my blood pressure or pulse is, not merely that they are erratic. I don’t go to the doctor every time I am sick because then I’d always be at the doctor. In fact, I try to avoid it, because I don’t need the exposure to other germs, and I’m at the hospital for tests and maintenance enough as it is. We have a plan set in place, and we follow the script unless things get very serious.

Of course, there are extremes to this, and times I should have gone to doctor and I didn’t (hello, trauma room, if only I’d avoided you) and times I erred on the side of caution and ended up wishing I’d just dealt with it at home like I normally do.

But the point is, for many of us, the baseline we use for “urgent” is totally skewed. I’m not totally sure how to behave appropriately in a primary care setting, but I’m figuring it out as I go.

My doctor assured me my question wasn’t stupid. Maybe the real issue isn’t that it was an unnecessary one so much as I simply didn’t know how to answer it on my own—my experiences didn’t speak to this kind of judgment call in a helpful way.

Luckily it’s not simply my call to make, and asking a professional made it a lot easier.

Anyone else out there been caught in this kind of over-thinking when it comes to “normal” health stuff?

Monday, November 30, 2009

When Silence Speaks Volumes

I read this NYT piece, Are We Going to Let John Die? the other night and am only now just getting around to linking to it. It got me riled up, and like a successful Op-Ed piece should regardless of where we stand, it made me think about the issues involved.

From a research standpoint, health care reform remains on my mind these days. Right now, I’m looking at the civil rights movement, the early AIDS movement, and the disability movement and their influence on chronic illness. In terms of catalysts and goals for the chronic illness community, certainly health care reform is a significant issue. (Stay tuned, as I have a lot more to say about all of that…)

But when I move away from the books, journal articles, and interviews and look at daily life, and the recent content of this blog, I can see I’ve moved away from policy and reform a bit. This past spring and summer, it was hard not write about—from watching webinars that explored private versus public insurance to digesting the health care conversation with Bill Clinton to discussing the particular needs of patients with existing chronic illness, the subject was always fresh in my thoughts.

But lately, not so much. It’s still in the headlines, and I still read the articles. It’s still the topic of morning radio shows, and I still listen to NPR. Yet despite my cognizance of it, and its obvious importance to me as a patient, it hasn’t crept into my own titles and hasn’t been featured in my own writing.

The difference? Honestly, I think a lot of it has to do with the fact that this summer was relatively calm in terms of my health. I could manage the juggling act and stay on top of things with enough mental energy to engage in the dynamic conversation. Since September, I’ve spent 6-7 weeks acutely ill. Now, I am used to this cycle. If you’ve read this blog with any regularity, you’re probably used to it, too. It’s just the way things are when you’re blessed with dodgy lungs and a pathetic immune system and other medical complications right now.

On the positive side, I can say the infections haven’t been as bad or lingered quite as long as they normally would because of the very proactive, very aggressive preventive protocol I have been following since last March.

I’m a walking risk/benefits analysis, really.

While the cycle is all too familiar, what distinguishes it right now is that my workload has never been more intense. When infections sap my energy and consume my already scant hours of sleep, it hits me even harder. Or, to be more blunt, when I am sick it takes every ounce of energy and focus I have to just make it work, to get through the day and accomplish the tasks I need to in order to stay on track.

When I am sick, I fall off Twitter. I become a comments slacker on other blogs, my response time to e-mails takes a notable dive, and I beg off pretty much every commitment. I enter the Black Hole where the only things I can focus on are trying to get air and not falling behind in work. I read articles without comment, I skim headlines without linking.

In short, at times I am too busy being sick to contribute in any meaningful way to the conversation of the very health care reform that could define my patient experience.

Ironic? No, it’s inevitable. It’s life with chronic illness.

I get sucked into the Black Hole of silence even with a ton of local family and friend support, with an amazing husband, a relatively flexible career, a world-class hospital 10 minutes away, a healthy stubborn streak, and twenty-nine years of experience living with illness. Oh, and with very good health insurance.

Scary, when you consider the millions who cannot say the same.

(Also inevitable, rather than ironic: what keeping that wonderful health insurance has cost me so dearly in so many other ways, and how precarious it feels nonetheless.)

I guess I can tell I’m starting to improve. The ability to be riled up is always an encouraging sign.

Sunday, November 22, 2009


Even with my currently muted sense of smell, I can tell good things are happening in our kitchen right now. The plague of November 2009 continues to lay siege to my lungs and my productivity, which could spell trouble for the Thanksgiving dinner we are hosting. (And no, it is not H1N1; I was able to get my vaccine at a recent lung appointment.)

Luckily, my husband loves to cook and knows the value of early preparation when we’re in the midst of an infection. Gluten-free corn bread is cooking, sweet potatoes are roasting for a bourbon-walnut sweet potato mash, and other assorted casseroles and desserts are in various stages of completion.

Like so many others, I find it impossible to avoid reflecting on the things for which I am grateful this time of year. I can’t help noticing that these annual November posts invariably include food, like this one on the evolution of a gluten-free Thanksgiving.

Holidays are largely defined by the traditions we have, and particular foods and recipes form part of those traditions. I am grateful that over the years we’ve been able to blend long-held traditions with gluten-free ones. I love that my parents are excited to make a side pan of gluten-free stuffing to go along with their famous dish. I love that I addition to the usual pies, we will have a gluten-free almond cake with homemade cinnamon ice cream that tastes a lot like eggnog. (I also love that my husband made said ice cream in between days of running errands, cleaning, and ferrying my nebulizer from room to room.)

And I love that being gluten-free on Thanksgiving isn’t a big deal. In our group we have celiac, lactose-intolerance, allergies to peppers, onions, nightshades, cheddar cheese, and chocolate, as well as the challenges of type 2 diabetes. We all have some safe foods and some foods we know to avoid, and we will all be satisfied by the end of the meal.

It has been a long year, one filled with exciting developments but just as many challenges and setbacks. It has been a long year for so many people around me: illness, loss, economic stress, uncertainty.

I was thinking about all of this the other day when I skimmed some of the e-mails I get from an online disease community for celiacs. I don’t participate much, but I appreciate the advice and recipes many group members offer the newly-diagnosed. Usually people are pretty upbeat, but there’s one voice that is consistently negative. Work dinners, picnics, holidays, restaurant trips, etc—the focus is always on what this person cannot have.

I know sticking to a gluten-free diet can be expensive and difficult, and I know it is a huge adjustment. I know that adjustment is a lot more challenging around the holidays, especially if you’re newly diagnosed. Six years ago, I was diagnosed days before Christmas. Try being gluten-free for a mere four days when you’re not sure what is safe and trying to eat at an Italian Christmas Eve, where six of ten entrees contain pasta and the other four have flour of some kind.

Nothing says bountiful Christmas dinner like a plate of olives and peppers from the antipasto. So I get it. I really do.

I only wish I had the grace and eloquence to reply to the negative posts along these lines: While I am not grateful I have celiac, I am grateful I know I do and can do something to feel better.

That was the essence of the reply someone posted last week, and it is a sentiment that looms large in my thoughts these days.

I am grateful that in light of other medical problems that do not have such an immediate and definitive treatment plan, I have something I can manage with my diet. I am grateful that I know what’s going on (especially since I never presented with GI symptoms) and that I am no longer throwing my autoimmune system into a frenzy by eating foods I cannot process. I have control over something, I have choices and options I can make every day to help improve my health.

As many of you with chronic illness can attest to, that does not usually come easy.

With viral plagues and flu fears and feeling like no matter how hard I try to get air it will not come, having that kind of knowledge and control is even more important to me. And knowing people around me are dealing with far more right now, emotionally and physically, I realize how precious this is.

As many of you know, I’ve spent many holidays in the hospital. Usually, just being present and accounted for at the Thanksgiving table is enough for me. This year, knowing the people who matter to me will be there, despite a lot of serious challenges and stress in their lives, is what counts.

We might not be able to eat everything there, and we might not all feel too wonderful. But we’ll all be at the table, and that’s enough for me.

Monday, November 16, 2009

Tales from the Crypt…

Contrary to a certain famous modern poet’s assertion, in my world November is the cruelest month. Okay, it’s arguably a toss up with December-February, too, but in terms of the lovely cycle of getting sick, falling behind with work, and missing family functions and/or social engagements, November is right up there with the best of them.

This past weekend was no exception: the tightened chest and spastic cough of Thursday night developed into the mini-plague that prevented me from attending a long-awaited family function Sunday morning.

(It’s not H1N1, though. Still hoping I avoid that long enough to get my H1NI vaccine.)

Anyway, I had to make a phone call early Sunday morning to let relevant parties know I would not be able to make it. My throat was hoarse and scratchy from coughing, and my voice itself was fairly faint because I wasn’t moving much air. It was definitely Crypt-keeper quality (as opposed to my other alter-voice, Darth Vadar, which is a little deeper and usually sets in a good two to three weeks later.)

My two-year-old niece loves the phone these days, and when she heard it was me on the other end, she wanted to say hello.

I started talking (read: rasping) to her as best I could, asking the kinds of questions two-year-olds are usually pretty good at answering.


“Broken. Mama, it’s broken,” I heard her say.

“Not working,” she muttered, her voice growing muffled and distant as she pattered away.

Couldn’t have said it better myself.

Wednesday, November 11, 2009

On H1N1, Vaccines, and Differing Views

I haven’t written too much about H1N1. Partially, this is because as an avid reader and headline scanner, I suffer a bit from H1N1 fatigue. From local news reports to national updates to reminders and policy talk at my job, H1N1 is everywhere.

But it’s also because everyone seems to have an opinion about the H1N1 vaccine. And lately it seems I can’t go anywhere without getting a hearty dose of other people’s strong opinions about it in my face.

It’s a controversial topic for many, and I get that. I respect other people’s right to make their own decisions about their health. The thing is, I don’t need to agree, or be convinced my own decision about my health is wrong. So when I’m getting my blood drawn and stressed about getting to work on time because the line is long and my veins are wily and unyielding, I don’t really need a lecture from a health care professional on how flu shots are full of toxins and poisons we shouldn’t put in our bodies. (While flanked by posters advocating flu shots, by the way.)

You might be drawing my blood, but that doesn’t mean you know anything about my health or my personal beliefs, or how I might interpret your unsolicited “advice.”

The same goes for the forwards and attachments that appear out of the ether in my inbox warning me against the evils of vaccinations.

Because you know what? I would do anything for an H1N1 shot right now. For months every single doctor and nurse on my medical team has repeated the same mantra: I am absolutely high risk and should get the shot. The problem is, they just aren’t available yet. I have reason to believe I can get one in the next month, so if I can avoid infection until then, I will be in good shape.

At the same time, it is not as possible for me to read the headlines but stay on the sidelines. Students in my classes now have the flu, and each time I get an e-mail about a 104-degree fever I worry about them, and about how many of us were exposed.

I am not a paranoid person, and considering I spend 7-8 months a year continually sick, I am pretty used to infections. Generally speaking, I take reasonable precautions and reasonable risks with my health.

After I read this NYT article on parental views about the H1N1 vaccine, I knew I couldn’t resist the pull of breaking the silence any longer. In discussing society’s willingness to be vaccinated during twentieth-century epidemics like polio and smallpox, historian David Oshinsky is quoted as saying, “People had a sense of risk versus reward and listened to public health officials.”

That line really resonated with me, because that’s how my doctors and I have approached the H1N1 shot. For me, the risks of contracting H1N1 are much, much more severe than any risks of getting the shot. (And yes, I get the seasonal flu shot every year without incident, and since they are made the same way, I personally do not have fears about the production of H1N1 vaccines.) Vaccination and communicable disease prevention are some of public health’s greatest triumphs, in my view, and I am incredibly grateful modern medicine gives me and my sub-par immune system some protection.

After all, otherwise healthy people face serious complications from H1N1, usually in the form of secondary bacterial infections (pneumonia) that linger because the flu virus damages cilia in the respiratory tract.

I don’t have working cilia. I also have bronchiectasis, which increases the likelihood of bacteria and mucus festering in my airways, causing severe exacerbations. That sounds like an awesome combination, doesn’t it? I can catch a cold in September and not recover until March, and I’m not exaggerating. I’ve almost died from infections on multiple occasions throughout my life, and have spent weeks in isolation units of hospitals. There are few antibiotics left that can squelch the secondary bacterial infections I am so good at growing. As much as my friends joke I need to live in a bubble, I can’t.

But if there is a way for me to prevent contracting H1N1, sign me up. This is the decision that makes absolute sense for my individual circumstances, and it is one every medical professional I know espouses.

I know every person’s situation is unique. For example, I know that for patients with certain autoimmune conditions, the risks of getting a flu shot are very real and very serious, and I would never presume to convince them otherwise.

But that’s just it—these are the kinds of conversations that should take place between doctors and patients, between the people who know the most about an individual’s medical history and constellation of risks. When people do ask me, I am always honest about how I feel about the shot for me, but emphasize I am not a medical professional.

I’m not saying I’m unwilling to engage in dialogue or debate about this, but there’s a difference between informed views on subjects and imposing personal views on other people. I know vaccination in general is a hotly contested topic right now, and there are so many voices on both sides. I don’t want to start shouting. Honestly, I just want to get my shot and get through this winter.

So please, please don’t assume to know the particulars of my situation and tell me I am crazy to pump my body of toxins. No matter how strongly I feel about opposing viewpoints on this, that is not a productive way to have a conversation.

And the way I see it, I’d be crazy to turn down the chance to protect my dodgy lungs.

Thursday, November 05, 2009

Disappointment: The Intellectual Opposite of Hope?

When my agent was shopping my first book out to publishers, it was an incredibly tense time. I’d done all I could do to set myself up right, and now the decision was out of my hands. For a control freak like me, it was an uncomfortable position.

But what made it harder was how much I felt hinged on getting this book under contract. In my mind, everything else I wanted to do depended on getting this deal for this book at this particular time. The next book I wanted to write, and the book after that, and the book after that? They could only happen if this book happened. The fledgling freelance career I wanted to build out? I would have much better standing with a book under my belt. The more stable academic and research positions my newly-minted MFA hinted at? You know what they say—publish or perish. And my very identity as a writer? Well, writers write things, right? Things that get published.

Of course none of those static boundaries were true, and my life and career would have gone on had things not worked out the same way. It is easy to say that, though, because I did get what I wanted then. The script I wrote for myself, the one so meticulously reliant on each step unfolding just so, went (somewhat) as planned.

But what are so much harder—and, unfortunately, so much more common—are the times when we do plan and work towards something and set up a script for ourselves that does not come to fruition. We want so desperately to accomplish a certain goal that it becomes difficult to see ourselves in any other reality. I see this in my students who are applying for jobs, my consulting clients who are applying to schools or trying to secure agents, and of course I see it so often in the lives of patients. We want a last-ditch medication to do all the things it promises it might; we want the much-anticipated surgery to be 100 percent successful; we want that super-star specialist to give us the answers we need to hear.

We carefully construct this eventual outcome, and we cling to the promise of that better reality because that’s what we need to do to push through all the obstacles and hard work necessary to have a shot of getting there.

We hope for the best, because it is not unreasonable to hope for good things.

Because we have hope we can keep sending out submissions while the editors’ rejection letters accumulate, or the job offers don’t appear, or the letters that arrive in the mailbox are too thin. Because we have hope we work through the side effects of medications, or gear ourselves up for the major surgery and lengthy rehabilitation, or undertake medical interventions with high risk and limited chance of success.

I’ve often heard that the opposite of hope is despair. I don’t disagree with that, but I think the situation is far more nuanced. In the immediate moments of bad news, setbacks, and realizations that what we want is not going to happen, despair is real, and it is palpable. It is the moment when hope does not seem possible. It is an innate emotional reaction, one that manifests itself in different ways: tears that come without warning; numbness; a feeling of emptiness. It is encompassing and isolating. It pulls us off our center of gravity.

But there is an intellectual component to an otherwise emotional experience, and I think that is where disappointment comes into play. Disappointment is not as overwhelming as despair, but it makes demands of us. We have invested so much time and energy into one path, and it didn’t work out. Now where we do we channel that energy and momentum?

It’s a question of readjusting our expectations, and re-calibrating our goals. Whether it was getting a certain job, having a successful surgery, or any number of other realities, when we envisioned the “after,” we saw things unfolding a certain way. We have to write ourselves a new script, and in our disappointment, we don’t always want to do that. New deadlines need to be set, new strategies need to be formulated.

Sometimes, if we’re lucky, our re-writing is only temporary. Sometimes, it is life-changing.

I am often amazed at the capacity we have to hold out for the best possible outcome even in the face of very low odds: when early indications and test results don’t look promising, when other people’s envelopes already arrived and we are still waiting, when it has been three months and an editor hasn’t gotten back to us, or deep down we know we’re not really feeling any improvement on a new medication but we resolve to give it more time.

This capacity for hope is wily like that. It is stubborn, sometimes willfully so. But because of that, eventually we are able to envision other possibilities and are willing to pick ourselves up and start again.

Sunday, November 01, 2009


Things have been a little crazed lately. There’s been a lot of health-related static taking over the scene offline, and on the heels of my last post on priorities, I’m trying to strike a balance.

I have stories to tell, but sometimes the stories that most need telling need the longest time to settle, so their many threads come together in a way that is cohesive, not chaotic; so the story is tempered and not reactionary. And sometimes the stories that matter the most are not always solely ours to tell.

While my posting has been light the past couple of weeks, I have tried to keep up with blog posts and headlines. No matter what else is going on and how many roles I find myself trying to manage, I will always be a reader.

So in lieu of the many posts swirling around that are not quite ready for editing, I offer instead a smattering of headlines that cut through the static this past week.

I’ve seen a number of stories on the new research that suggests a connection between chronic fatigue syndrome and a retrovirus, and I was pleased to see this news article, in which pain advocate and For Grace founder Cynthia Toussaint is interviewed. I’ve interviewed Cynthia several times regarding pain and gender, and find her story compelling.

I spent a lot of time the past month researching early AIDS activism and its relationship to other political and patient movements. I have a few students in different courses researching and writing about various aspects of HIV/AIDS right now, too, so it’s been an interesting time of intersection. As such, I was particularly interested in this NYT article, “Obama Lifts Ban on Entry Into U.S. by HIV-Positive People.”

According to the article, “The United States is one of only about a dozen countries that bar people who have H.I.V., the virus that causes AIDS.”

Now, I could write several posts on this topic (give me time) but I’ll start with the obvious: it’s about time that archaic guidelines based on fears and lack of knowledge/understanding of the disease were updated to reflect the realities of the HIV/AIDS and the respect that patients living with it deserve.

And moving from news and policy to the relationship realm, I spotted this submission in the Boston Globe’s Love Letters forum: “She Has Cancer and I Want Out.” A cursory glance at the headline might warrant immediate reactions, but read on: I agree with Meredith Goldstein that the larger issue here isn’t the cancer, it’s the letter-writer’s inability to be honest from the get-go.

And with that, another weekend is almost over, and another week of headlines is about to begin.

Thursday, October 22, 2009


As I sit here and type this, I am acutely aware of my work e-mail accounts that I should check, and the client I need to respond to, and that article I bookmarked this morning that could be useful for my book. I’ve neglected Twitter woefully the past couple of days, and I’m late getting my writing group this month’s submission.


I know it is universal, this daily push and pull between the tasks we need to do (and the hierarchy that exists when we need to do several things) and the things that in an ideal world, we’d able to do or want to do. We make countless small decisions each day that reflect this notion: to read the newspaper or respond to an e-mail, to eat lunch at your desk rather than taking a short break and getting out of the office, to look over work on the train rather than zoning out or reading for pleasure.

What I’ve come to appreciate lately is that line is unbelievably relative—what you would do on a normal day is of little significance when major crises happen. You do what you need to do when people in your life are sick or need help or experience loss, just as you throw normal routines and schedules to the wayside when you experience your own crises, losses, or disruptions. In the immediacy of the moment, there are things that simply matter more.

But that’s the obvious part. What’s more complicated is the gray area in between the everyday and the extreme, when there are many conflicting priorities. Don’t get me wrong, I don’t know a person out there who doesn’t (at least on occasion) find the balancing act of multiple priorities difficult to manage. I honestly can’t imagine how often parents must face these decisions, but I know that the hierarchy of priorities gets turned upside down when you have a family.

But I do think that any type of chronic illness adds a unique layer to an already complex terrain.

As a minor example, I canceled chest physiotherapy the other day because I was feeling terrible (unrelated reasons) and just couldn’t stomach the thought of a half-hour’s worth of clapping. I wanted rest and I wanted peace. Yet by the very next day I was much more congested and wheezing on both my inhale and exhale, and knew that not having chest PT made a difference. Do I regret the decision? No, because in that moment, other health concerns outweighed the needs of my usually demanding lungs.

Decisions that might make so much sense from a financial, professional, and emotional standpoint sometimes conflict with what makes the most sense from a physical standpoint. There are all these reasons to take on a new challenge, but sometimes no matter how many compelling reasons there are to do something, the difficult answer comes down to this: what is good for the body and the mind do not always correspond. Sometimes the long-terms physical consequences of decisions are not worth the short-term gratification.

Of course, the reverse holds just as true. Sometimes it is more important to take the risk, to have that experience, than it is to miss out on it. Speaking as a girl who needed multiple doctors’ letters and lot of legwork to prove I was healthy enough to travel abroad when I was accepted into an Irish university, I can vouch for that.

And sometimes it is more important to be there for someone else even if it comes at the expense of your own body or comfort, because those memories are what people carry with them. Those memories are what you carry, too.

This all makes me think about I conversation I had on Twitter about H1N1 vaccinations recently. When asked how I felt about getting one, I said that it made sense for my individual circumstances—I am in a high-risk category, and all infections hit my lungs harder to begin with. I’d rather deal with the consequences of the shot than take a gamble with a flu virus that can cause serious (sometimes lethal) secondary lung infections.

But, these are my circumstances and my health priorities and might not apply to you for your own individual reasons.

In the end, I think most of us face so many choices that force us to weigh benefits and risks. From choosing time with friends over work to choosing certain medications over others due to different side effects, very little is without calculation…and the line is always changing.

But that’s what keeps things interesting, right?

Tuesday, October 13, 2009

These Three Things

It was a cold, rainy, dank morning in Boston today. Since I am stubborn and would rather put on another layer of clothing than admit it is time to put on the heat, it was an especially cold, dank morning in my upstairs office. (Update: I have since relented and turned the heat on; when I repeatedly stopped typing to rub my hands together, I decided enough was enough.)

Anyway, I had my music set to shuffle when a song from David Gray’s White Ladder started playing. Between the dreary weather and the music, I was immediately transported back to my year in Dublin, when that album was immensely popular and I would listen to it on repeat in the tiny living room of my apartment. David Gray was the soundtrack for train rides to Galway and Belfast, for spelunking trips and jazz festivals, for marathon paper-writing sessions and impromptu dinner parties.

In those days, I wanted time to stand still. I loved Ireland, I loved the friends I made and the classes I took, and I even loved the way my lungs responded to more consistent weather. One academic year was not long enough, and from the first September week I unpacked my bags and walked down Dame Street to Trinity College Dublin, I dreaded the June day that would take me back home.

Everything was an adventure, and the unpredictability of that was enthralling. It was so unlike my normally intense, over-committed schedule and my innate tendency to plan. I didn’t have answers, and I didn’t need them.

And here I am nine years later, listening to David Gray and the sound of the rain while I type away. This time, I smell herbal tea, not the smell of hops from the Guinness Brewery nearby, and the morning din is punctuated by dogs barking, not the bells of Christchurch Cathedral across the street.

Most notably, right now I would do anything to make time move faster. If I put my head down and just make it work, then before I know it spring will arrive and I can exhale again. I will get through the long winter months whose infections and setbacks already have their tentacles wrapped around me, months that have me holding my breath, steeling myself for what they might bring.

I will make the deadlines and finish the projects and the early mornings and late nights and weekends will blur into one composite as they recede into the background. In my research work I am asking so many questions I do not know the answers to yet and that is a good thing but it leaves me unsettled. A few more months of parsing the information out and who knows, maybe I will have answers. Or maybe I will just have more questions.

There might be more answers to major decisions that take too long to sort out, decisions with no easy solutions but lots of potential.

If I start to think about all of this, I get overwhelmed. Instead, I try to focus on the present, on today’s To Do list and today’s set of concerns and challenges. I cannot fast-forward through until spring anymore than I could freeze time and stay in Dublin nine years ago. I didn’t want to plan things back then, and I have very little control over planning a lot of things right now, and the irony does not escape me.

I came across a quote recently (and yes, it is up on the big combination board of chaos) that reads:

“They say a person needs just three things to be truly happy in this world: someone to love, something to do, and something to hope for…” (Tom Bodell).

I do not lack for these in any category, so maybe that’s the answer I need to stay present.

Thursday, October 08, 2009

More Narrative Medicine and Organized Chaos

I figured if I am going to write about the state of “organized chaos” in which I’m trying to just make things work, I should provide some details.


See that line of writing at the top of the wipe board? It really does say “There is nothing as clarifying as a deadline,” and I really do find myself looking up at it, particularly during those very late nights or absurdly early mornings when the clock and my physical capacity to finish the job are engaged in head to head combat.

The Stickies application on Macs? I would be lost without their color-coded power to organize my day, my thoughts, my lesson plans, and my research questions.

And yes, we have bookshelves. Bedrooms and home offices and even whole closets full of bookshelves, but after my marathon summer of research, we need more. Plus, I like to have my files and sources close at hand when I’m writing.

Anyway, looking at my slightly embarrassing stack of books reminded me of a post I wrote on narrative medicine. Plus, we just happened to talk about Jerome Groopman and Atul Gawande in one my classes today, and it occurred to me I haven’t updated my list of recommended titles in a long time.

Not all of these neatly fit the narrative medicine bill, but they are all about the human experience of illness in some way or another, and all are fascinating:

Carl Elliott’s Better Than Well: American Medicine Meets the American Dream: a really interesting philosophical look at not just cosmetic surgery but the whole idea of the self we present to society and the society that passes judgment on the physical self.

Roy Porter’s Blood and Guts: A Short History of Medicine: I love everything I’ve read by Roy Porter, including his 800-page The Greatest Benefit to Mankind: A Medical History of Humanity. This slim volume packs a ton of information on medicine throughout the ages in a compelling, easily digested way.

David Rothman’s Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making: So this one is a bit more dense and scholarly than others, but it is a great read. For me, it helped me contextualize post-World War II medicine and the development of modern clinical trials, research, and patient rights. I have a much better grasp of current ethical situations and challenges now that I have historical context.

Dorothy Wall’s Encounters With the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome: Wall does a skillful job blending personal experience and anecdotal reflection on living with Chronic Fatigue Syndrome with extensive research and interviews on the political and scientific controversies around naming, diagnosing, and managing the condition.

I’m always interested in new titles, so feel free to add your own suggestions to this list.

Tuesday, September 29, 2009

Just Make It Work

One of the wisest people I’ve talked to is Vicki, the thirty-something patient with cystic fibrosis I interviewed extensively for Life Disrupted. Chapter Seven (“Salient Suffering”) details a conversation we had about suffering:

“For years, people have told her [Vicki] how brave she is, how strong and resilient she must be to endure the many complications of her illness. They are likely referring to her ever-present cough, her intrusive feeding tube, or her very basic struggle to get enough air…Some people assume that by virtue of these physical symptoms, Vicki is somehow naturally equipped to handle them. She disagrees with this all-too-common assumption…She puts up with the disruptions and the bodily complaints because she has to, something perhaps healthy people don’t always consider.” (42)

I had a somewhat similar conversation with Kairol Rosenthal, author of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s, for a different project. You’ll hear more about it down the road, but we talked a lot about cancer mythology and the idea that having cancer makes you stronger, or more spiritual, or more ____(insert adjective of choice here).

What if you were already strong before cancer? What if you endure it all because the other option is not enduring it and knowing you might die?

Anyway, I had all of this on my mind this weekend after talking about work with a friend of mine.

“It’s amazing what you can do when you have no choice,” I said. It was a light-hearted conversation about work ethic, but my smile didn’t mean I wasn’t completely serious.

And it’s true. When you have obligations and deadlines it doesn’t matter if you’re overcommitted or tired or would rather get home earlier—you get it done. I think pretty much everyone from all walks of work life can relate to that.

My desk at work is pretty much empty; everything I need is in my laptop or my briefcase. Years of hospital packing have conditioned me to have everything I need to be able to work at all times with me wherever I go. But my office at home is the opposite. I spend more time there (a couple weekdays, most weeknights, and weekends) and it shows. My desk area is the epitome of organized chaos—folders and papers and notes and staplers and binder clips and books and coffee cups litter to desktop, flanked by stacks of folders and more piles of books (and often, dog bones and half-chewed tennis balls) on the floor.

Above the desk hangs a combination magnetic wipe board/bulletin board, adorned with post-it notes, quotes, forms, phone numbers, etc. At the very top is a quote one from one my graduate school professors. It is simple and precise, and I find I need to look up at it every day:

“There is nothing as clarifying as a deadline.”

Writers, I am sure you can relate to this, that you have stayed at your computers until 3am or gotten out of bed when it is still dark and skipped meals and plans and, oh, entire weekends or vacations, to meet your deadline. When you want something badly enough, you make it work, like this writer I’ve followed for a couple of years, who steals every possible chance to work on her writing: before work, after work, and every weekend. Her book recently published.

It may have been born out of a writing workshop, but again this quote is far more universal. Even when it isn’t easy or doesn’t even seem possible, we make our personal definition of a “deadline” work: the mother who was up all night with a sick baby still goes about her day with no sleep; the working parents with crammed schedules make it to the teacher’s meeting and deal with the work consequences when they should be going to bed; the financially strapped student takes on another part-time job while juggling classes and internships and expectations from so many people.

It is amazing what you can do when you have no choice. It is not always ideal and it is not something you can sustain forever but sometimes you just have to take a deep breath, vow not to think about it too much, and plow through it. It could be finishing grad school, or completing a medical residency, or working on a huge client project. Or it could be dragging yourself through the machinations of your day when all you want to do is sleep.

When it comes to health, I agree with Vicki’s sentiment that much of what we do as patients is because the choice not to do it is simply not viable. I do not think moral attributes need to be part of what is largely pragmatic.

Chronic illness complicates the daily negotiations and moments where we just need to make it work that we all face. For example, we might not take that sick day when we’re feeling under the weather with “normal” stuff, the same sick day healthy people might take, because we know that while we feel miserable with this cold or headache now, we might really need the sick day for pneumonia or a severe flare. Necessity dictates that we make our decisions based on a different rubric. Sound familiar?

We might totally over-commit in the moment and pull long days when we’re feeling okay because we know our ability to be productive is not in our control when we get worse. How many times have you been there?

I can’t help but think about the time I had to facilitate a three-hour graduate school seminar fresh from a hospital discharge. By “fresh” I mean I bargained for a morning release so I could make the class on time, changed back into the clothes I’d worn to the ER seven days earlier, and had my (very skeptical) mother drive me the few city blocks from the hospital to my campus. In my haste to get my materials together and my exhaustion from the hospitalization I forgot to take off my hospital bracelet, and I know I sounded terrible. It wasn’t ideal and it certainly wasn’t preferable, but I got it done. I knew there would likely be other times in the semester when I wouldn’t be released in time, and I couldn’t afford to take an incomplete in the course.

It may sound like a crazily stubborn thing to do, but I didn’t see a choice at the time. Or perhaps more accurately, I knew all too well what it felt like to really not have a choice, to be stuck in that hospital bed, and it wasn’t an opportunity I was going to squander. Accountability is still important, even when you're not feeling spectacular. I bet you can relate to that.

In the end, maybe this circuitous post is really nothing more than a pep talk for everyone out there feeling a little overwhelmed or a little unsure of how you will reach your goals but you know somehow you will. When I look at the quotes I've collected here, I am glad there are people who have been there who can remind me of that sometimes. Or, you know, today.

Wednesday, September 23, 2009

In the Headlines, In Real Life

My writing may be a little more erratic than normal right now, but I still try to stay on top of the headlines. It’s the journalist in me; a day doesn’t feel right if it doesn’t start with skimming the newspapers, no matter how early. Every now and then, I come across stories that directly resonate with what’s going on in my own life.

As a New Englander, I am acutely aware of rapid and drastic seasonal changes and their effects on my lungs. I suffocate in humidity, cold winter months mean lots of infections, and the gray area between summer and fall and winter and spring are predictable only in their unpredictability.

I steadfastly maintain two truths about the weather and my health: my lungs are as accurate a barometer of weather changes as an arthritic’s joints, and the reason I did relatively well when I lived in Dublin was because although the weather was consistently dismal, it was consistent. No huge swings, no choking heat, no bone-chilling lows.

Anyone else sensitive to weather fluctuations?

Now, as I wrote awhile ago when I started this blog, I do not have asthma. However, when I read this NYT article on asthma and weather changes yesterday, I nodded along in agreement. The study found it is not just environmental or allergic factors that contribute to asthma symptoms:

“The study authors noted that many patients are well aware that weather fluctuations influence their asthma symptoms, but this is the first study to document the effect. In addition, it wasn’t just cold weather that triggered asthma problems but temperature increases as well.”

It’s what I’ve always known about my some of my own lung symptoms—wheezing, congestion, etc—even if they are caused by bronchiectasis exacerbations and PCD. Right now, I’m sitting here in summer-like conditions with newscasters warning of a big chill tomorrow—but I already knew that was coming. I could feel it in my chest.

Switching gear a little bit, I was so happy to see this wonderful newspaper article about the Chronic Illness Initiative at DePaul University. I have strong feelings about chronic illness and education. From students being proactive, anticipating their needs and problems, and communicating regularly to faculty and administration being flexible and accommodating, there are many steps we can take to ensure that students with chronic illness achieve their educational goals.

Luckily, the Chronic Illness Initiative (CII) is an institutional resource that helps both students and faculty navigate these complicated issues, and enables students to complete their degrees at an appropriate pace for their medical needs.

I’ve written about the CII before, but this recent article was particularly compelling to me because I spoke at a Symposium there last spring and was fortunate enough to meet several of these students, including some interviewed in the article. I was impressed with their commitment to education, but also with their enthusiasm for the CII itself.

Even more, this fall I’m actually teaching an online class through the School for New Learning at DePaul, the same school that operates the CII. It’s a class that explores how people with chronic illness exist in an otherwise healthy world (the personal and institutional challenges), and there is definitely crossover between the goals of the CII and course content.

It’s a great article, and personally, it is neat to see when headlines and real life intersect.

Tuesday, September 15, 2009

On Invisible Illness

This week is Invisible Awareness Week, and my post about it is a day later than I wanted it to be, which is right on par with the way things are going right now.

In fact, I wasn’t planning on just posting about it; I was scheduled to present a virtual seminar this week and due to intense schedule conflicts, and with great regret, I had to cancel. (I’m already percolating ideas for next year, so we will see…)

I’d originally planned this post to be a continuation of the conversation about illness versus disability I’ve had here on A Chronic Dose. To wit, I recently sat through an HR orientation and was pleasantly surprised by the time and attention the speaker gave to “invisible” conditions.

But that post didn’t work out as planned, either, though I do promise to return to it.

Instead, though it’s a day later than what I wanted and not neatly focused like I’d planned, all I can do is write about where I am right now.

Overwhelmed. Exhausted. Exhilarated. Optimistic. Anxious. Trying to plan for the unpredictable, willing my body to cooperate for me and not let me down, and trying to squash the voice that’s whispering Haven’t you learned anything yet?

I’m adjusting to some new work changes and client load and embracing the opportunities with gratitude. It is a precarious balance, though, and while I loathe cliché, it does seem like all it will take is one slip and everything could tumble down like a house of cards.

I mean, all I have to do is stay as healthy as possible, right? (Insert cynical tone here.)

But I cannot indulge the what-if’s and the doubts. It does me no good, and it flies in the face of my reason thoughts on hope.

And really, in the middle of a lot of changes and decisions and pressure, what this tension is about is identity. It’s an ongoing evolution; just when I think I’ve established a groove, I need to re-calibrate.

I’m a writer. I’m also a consultant, an editor, a professor, and a patient. Sometimes those roles overlap, like when I was asked to teach a course using my first book as a core text. (Talk about the personal and the professional colliding. I might have more to say about that later.) Often, the roles aren’t as blatantly converged, like when I sign on new freelance editorial clients, or when I stand in front of other classrooms and hand out syllabi and the only way anyone might know about my patient experiences would be if they Googled me. (Hello, potential Googlers!)

Clearly it’s no secret, but this part of life is something I leave outside the classroom and client conversations. This division is frenetic, but necessary.

I thought about how I wanted to be identified by others (which of course is much more about how I want to see myself), and the whole notion of public versus private while I waited for my new physical therapist to arrive last night.

My normal therapist is away, and I haven’t had anyone besides him for six years. (Yes, I am spoiled.) Having a health care provider visit your house is such a different experience than going to a hospital for treatment. A complete stranger comes into your living room, performs a rather physical treatment on sensitive body parts, and is witness to all minutiae and vulnerabilities of private life: the mail on the front table, the barking dogs, what you’re making for dinner, and often, what you look like in pre-dawn hours when your glasses are still on and your pajamas don’t match and you reach for the spit cup.

“So how was your day?” she asked when we were settled into position, as if we were picking up from an earlier conversation. Because you know, that's what you do when someone you've known for about 90 seconds is thumping your chest and it's dinner time and your dogs are slamming their bones on the hardwood floor, begging for attention.

“Long but productive,” I said. And from there we talked about where she lived and how I worked near there. We talked about writing and teaching and graduate school, and we talked about rescue dogs and traffic and commuting.

And even though she was there because I have PCD and bronchiectasis and I was literally choking in phlegm before she arrived, it didn’t really come up.

It wasn’t that my illnesses were invisible (um, hello hacking cough and vigorous clapping) but they were not defining.

The point of Invisible Illness Week is to spread awareness to others. This week, I think I was the one who needed to appreciate that sometimes the push and pull, the tension between being a patient and being a person, the re-calibrating of roles—it all settles out.

One day at a time.

Sunday, September 06, 2009

Beyond Memes: Public versus Private

There’s an interesting meme going around Facebook and blogs right now: 30 Things About My Invisible Illness You May Not Know. With Invisible Illness Week quickly approaching, the questions posed are particularly resonant.

I’ve thought a lot about how I’d answer the questions. For some, I had immediate replies, like “Something I never thought I could do with my illness that I did was __” (live abroad for a year) and “The hardest part about mornings are __” (trying to be awake and, you know, pleasant for early morning chest PT). But several of them touched on things that my experiences don’t speak to in the same way; namely, the “before” and “after” of illness onset, or, most notably, “If I could have one day of feeling normal again I would__.”

Like many lifelong patients, this is my normal. I cannot long for what I cannot imagine. But the question of which is better, to have known healthy before getting sick or to have never known healthy—a question that comes up fairly often—actually hints at something deeper than these static boundaries. This is my normal, this is the life I created from the circumstances in which I found myself and I would not trade what I have created for a taste of a different meaning of normal.

Though I’m not going to complete the whole meme here, I think it can be incredibly useful, and not just for people adjusting to sudden or adult-onset chronic illness. As I read people’s replies about what nice/surprising things others have done for them, it hit me how much of that is my normal, too. I’ve always been sick, I’ve always been surrounded by friends and family, so I have, quite literally, grown up having people respond to me with compassion, loyalty, and empathy.

In fact, the hospital visits, cards, phone calls, Fed-Ex’ed mix CDs, etc and the intrinsic knowing that there are people who will come in the middle of the night if they are ever asked form such an enormous debt of gratitude I feel no amount of similar deeds I do for others can ever repay it.

(Of course there have been moments of the opposite, and friendships that didn’t survive this, but like the careless comments, insensitive assumptions, or completely inane expectations I’ve received, they are exceptions, not the norm. Er, normal. Not trying to pun here.)

I’m not saying I haven’t had adjustments to make, or new realities to forge. I didn’t get correctly diagnosed with some of my more serious problems until I was an adult, and my treatments changed significantly. And like most patients with chronic illness, my health status fluctuates frequently and drastically, so life is a constant cycle of readjustment.

After mulling this over for a few days, though, I think the more striking “before” and “after” I can point to is that between illness being public or private. For twenty-three years I was sick and while it seeped into everything I did and every decision I made, it wasn’t something I talked about outside of family, friends, teachers, and of course, doctors. I’ve had some sort of a byline since I was 14, but the only piece of “public” writing that concerned illness was my college essay, and that was mainly because I felt I should probably explain why I missed the better part of two years of high school. You know, minor details.

And then, as the story goes, I found myself in a nonfiction course in my MFA program with a looming deadline and I didn’t know what else to write about, so I wrote about life in the hospital and suddenly, eleven other people knew more about my thoughts and emotions during medical crises than most people in my life did.


A few years, a few hundred blog posts, one book and another in the works, and many, many exchanges with other writers, bloggers, and patients later, here I am. And as much as I work to update and refine my reality based on the color of my lung secretions, how much air I can breathe in, or what other random infection or problem that springs up, I find the balance between private and public just as important and just as complicated.

I strive for the universals of modern chronic illness but know those depend on particulars. After all, all writing must tell a good story, and that story comes in the details. I embrace the conversations and explorations a more public illness experience allows for, and I appreciate the irony that people who read what I write are sometimes more in tune with what’s going on than people I know—it’s a macro version of that first workshop experience I had as an MFA student.

But for all the stuff that happens offline, the daily minutiae and the more serious decisions and reactions that are part of my normal that do not make their way into my posts, I am equally grateful for the private experience of illness.

And so to return to the meme, let’s look at #26: “When someone is diagnosed I’d like to tell them__.” Based on this post, I’d tell them of the value of online communities and social media, of how interesting and affirming it can be to read other people’s experiences and see traces of your own story in them. I’d tell them to connect, to leave comments on blogs, to know no one has all the answers but you should always be open to learning from others’ perspectives.

And I’d tell them that the best-case scenario is to also have someone you can call when you are crying and need someone to hear the tears, or when you have good news that the people who have traveled this long road with you offline can appreciate the most.

Tuesday, September 01, 2009

So Long, Summer

It’s been an usually long time since I’ve written—somehow, life and all its unpredictability conspired against me in terms of writing time.

And in the past several days, while I was adjusting to major work changes and family health stuff, entertaining visiting friends and making doctor appointments (because the good always accompanies the not-so-good, which keeps us sane and moving forward, I think) summer somehow slipped away. The cold, rainy weather of this past June and July and the two-week sweltering heat of late August did not constitute a real summer to my New England psyche, so today’s brisk temperatures and distinct autumnal crispness feel a bit hollow—you can’t say goodbye to those stereotypically lazy, hazy days of summer that really never happened.

As you know, I’ve been dreading the return of fall and winter in a way I never have before. Normally the choking humidity of summer in Boston and the luster of the promise of a fresh new start is a powerful combination that leaves me pining for September by, oh, July 4th. Seriously. I used to be the kid who had all her school supplies bought (hello, Trapper-Keepers and erasable pens) and organized by mid-July.

This year, not so much, but for good reason. I didn’t have any serious infections or freak medical calamities, which was a refreshing change. I got to sit next to President Clinton and talk about health care reform, and celebrated my fourth wedding anniversary. I woke up and on most days, I was able to complete the tasks I wanted. The daily maintenance and ministrations of chronic illness were white noise, routine parts of my life that did not define my life.

I want this trend to continue, despite the shorter days, the copious amounts of germs that accompany winter, the threat of H1N1(I’m not paranoid, just acutely conscious of my risks, just like I am with regular seasonal influenza), etc.

As I think back to my last post on hope (forgive the stream of consciousness style of this post), I’m reminded that we never can tell how things will unfold, personally or professionally. All we can do is move forward, do our best to minimize the variables we can control for, and adjust when necessary.

I have a medical plan in place to try and prevent another winter like last year, and more than that, I have a lot of things to look forward to this fall: new career challenges in academia, moving forward with my book, etc. As much as I’ve been willing time to stop lately, it hit me when I dropped some of my fall clothes off at the dry cleaners last night: that queasy feeling of anticipation.

September’s here, and I have every reason to believe (or to hope) it will be the start of good things.

Speaking of new changes and things to look forward to, I’m pleased to announce that my friend and colleague Jenni Prokopy from ChronicBabeand I are starting a radio show this fall. The Chronic Truth will debut in a few weeks on BlogTalk Radio. It will feature a variety of topics (diagnoses and doctors, relationships, health reform, etc), and will include guest experts, listener questions, etc.

We’re both really excited to collaborate on this (we had a blast doing our podcast) and will get the rest of details out to you as soon as we can.

Thursday, August 20, 2009

Hope (or something like it)

“Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chilliest land
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.”
--Emily Dickinson

Fourteen years after I learned this poem for my freshman English class, I still remember every line. No, this is not because I am a fervent Emily Dickinson fan but because the paper I wrote about this poem turned out to be the first of several papers my teacher proceeded to read to her sophomore class, according to the sophomores cornered me at lunch to tell me. They were not at all impressed.

To get an idea of how awesome it felt to be the English nerd, here’s some more context for how cool I felt: the fall of my freshman year in high school, I was in a new school where a.) everyone knew each other already and b.) no one had ever heard of my hometown and didn’t seem all that interested in finding out more about it--or me. While everyone bonded on fall sports teams, I hobbled around on crutches, my reconstructed ankle still months away from healing. I prayed my ears wouldn’t visibly spew infected crap during school hours, and tried to hide how wheezy I got traipsing through the sweltering hallways one crutch step at a time.

Oh, and obviously I had glasses and braces, but come on, you knew that was coming.

As an adult, I can somewhat appreciate my teacher’s misguided enthusiasm for my ability to write a cohesive essay, but I wish she’d, you know, just written me a margin note or something instead of using my work to coerce her other classes into writing. She did my one-girl crusade for normalcy (invisibility?) no favors.

But enough digression. I’ve been thinking a lot about the word (or really the concept of) hope lately.

Some more context: I am a person of extremes. Now, I’ve evolved a little from my crazy full-course-load-and editing the school newspaper-and interning-and volunteering or spending-weeks-in-the-hospital dual existence in college. I’ve gotten sicker, I’ve matured, I’ve changed my treatment regimen, I’ve re-prioritized things and I’ve learned that occasionally, limits and common sense are good things. There is a middle ground between 18-hour days and the ICU.

But in many ways, I am still all-or-nothing. It is a strength and a weakness. Those who know me in real life know this. I know I certainly experience my emotions like this. When I get good news or learn about possibilities, I get so excited. The tenor in my voice changes, I have more energy, I am consumed. When there is reason to be joyful, I am not someone who can hide it, not in my words, my diction, my gestures, my expressions.

And this is a good thing—I don’t want to become someone who cannot or does not experience things so fully. But it is not without complications: my expectations for things are high, and my disappointment is correspondingly low. I can be hot-headed, and easily frustrated when things don't work out. I can push things past the limit, and I can get too focused on doing to remember that goals are great but this does not mean they are not subject to revision. And sometimes should be subject to revision.

As I sit here preparing for another fall semester, I can’t help but think of that poem for more than its cringe-worthy memories. Though it has only been hot and summery for a few days in Boston, the shadow of autumn still manages to cut through the hazy humidity of summer. Leaves are scattered across the lawn already, and syllabi and new schedules must be set.

And for as much I love the fresh slate that is September, I am not ready. I’ve only just gained some semblance of stable health and in such a visceral way, I dread giving pieces of it back to every infection I know will come. My jaw clenches thinking about it. I do not want evenings to start at 4pm, I do not want to cough up blood, or lose holidays and weekends.

I would love September, if only October-April did not follow it.

I’ve put in long (long) hours on the book I am writing, and have realized the process is much slower than I had anticipated this time around. Reluctantly, I take research detours and “let things marinate” because it is what the book demands, but it goes against my nature to do this, especially with my daily word count stipulations hanging over me.

I’m expanding my editorial business and love connecting with clients and taking on new projects, and my excitement for it consumes me.

I am not patient. If I were, I would not exist so often in extremes. I have high expectations for my writing projects, for my career, for my health to remain stable, and for our future family (and that is certainly not an easy or quick process, either.)

I do not want to stand still when it is my nature to equate motion with progress. I do not want setbacks or delays; nor do I want winter, or to miss daily word counts, or to have taken such a circuitous route thus far towards being a parent.

And yet I yield.

All I can do is have hope: hope that things come to fruition as they are meant to; hope that I will have the wisdom to know when to pull back or push forward; hope that decisions we make now are right later, and hope that I don't ever move too far from extremes. I don't ever want to forget that fluttery, excited, jittery, all-consuming feeling. It took me fourteen years to name it as hope.

Friday, August 14, 2009

Comparing Facts in Health Reform

From the television ads and late night comedy sketches to the daily headlines about “death panels”and colorful town hall meetings, it’s obvious the dialogue surrounding health care reform is as contentious as ever.

But what about the substance of the actual proposals, which seems somewhat lost in all of the rhetoric? Chronic illness is a huge factor in reform, which is why I listened in with interest to a press call announcing Partnership to Fight Chronic Disease’s release of “Hitting the ‘Bulls-eye’ in Health Reform: Controlling Chronic Disease to Reduce Cost and Improve Quality.” The document is a side-by-side comparison of the bills and offers five recommendations for how Congress could control costs through chronic disease prevention.

You can access the publication by clicking here.

As the PFCD’s Dr. Kenneth Thorpe pointed out during the press call, looking at the big picture there are two major sets of issues involved in the health care debate: slowing down health care spending and improving quality, and providing insurance coverage to the millions of uninsured Americans. While the latter is hugely important, with the release of this document the PFCD is focusing on the first set of issues, which affect the chronic disease population in significant ways.

Thorpe characterized the current proposals a “good start” but said the idea would be that Congress would come back in the fall and build on this foundation and offer more aggressive solutions. As such, the report identifies five areas to target, many of which are familiar to us by now: prevention, better coordination of care, reduction of administrative costs, etc.

One thing I was really pleased to hear relates to disease prevention. Of course, we all know the best way to reduce disease expenditures is to prevent conditions from developing in the first place, and there are many specific ideas relating to that. As I’ve written before, when it comes to health care and existing chronic illness, prevention is often more a question of preventing progression than anything else. As such, I paid particular attention when Dr. Thorpe said we need to make sure we’re allowing patients to manage their own conditions and we need to remove barriers that stop them from doing that. His examples included getting hypertension re-checked or following up with blood sugar testing with doctors to prevent long-terms complications like amputations, but my mind went immediately to the types of long-term therapies (like chest PT) that keep patients like me out of the hospital.

The side-by-side comparison of proposals is really quite helpful, so make sure you click on over and go through the information yourself.

Thursday, August 13, 2009

Synergy (in an unexpected way)

It’s been somewhat of a synergistic week.

Someone I love is in the middle of some serious health issues. I’m not going into detail because it’s really not my story to tell but more than that, the physical details don’t matter. What does matter is that this person faces a very long and difficult road, and is frustrated and in a lot of pain.

And I am on the outside. I am able to listen and make phone calls or do errands, but completely unable to do what any of us who care really want to do: make it better.

While I can understand the frustration and isolation of illness better than others might, even this familiarity is not enough to bridge the gap. Being able to understand the emotional aspects of this situation does not make me feel any less useless, or helpless.

And with that, I stopped and realized what it must sometimes feel like for the people who love us—so much of all of this is out of their control, too. We often write and think about control in terms of our own bodies—what medications we take, what preventive steps we adopt, what can go wrong not matter how carefully we plan otherwise.

But those who love us have their own frustrations (and I know this is but one of many). They can do so many amazing things for us day in and day out and most of the time, that’s enough. Most of the time, we’re all probably too busy living to stop and think about it much. But every now and then, it must really stink to stand by and watch someone you love go through a bad spell and not be able to do the one thing you want to, which is to fix it.

A couple of years ago I wrote this piece on marriage and chronic illness. I re-read it today, with an even deeper respect for what it takes to make a relationship so much more than the sum of its challenges, and an even deeper appreciation for my husband, who for four yeas (as of today) has shown me what it means to put someone else’s interests above your own without hesitation.

I know I am one of the lucky ones.
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