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.

Down the Rabbit Hole: When Chronic Illness and Work Conflict

“Can I write you a note? Would that help?” my nurse practitioner asked delicately. She went on to add (just as delicately) that I really needed a few days off to recover from my recent hospitalization.

Part of me wanted so desperately to accept her offer, to tell her a note would help and that I could take a few days. I wanted to give in, to crawl into bed and not get out.

But, it was the busiest and most intense period of the semester, busy enough that I found myself commenting on drafts at 4am in the hospital, grateful I did not have a roommate so I could keep the lights on. I was too uncomfortable to sleep, and I’d hit that early-morning window where Law and Order reruns abated for a few hours.

The numerous side projects I was committed to—both on campus and in my writing life—were all ramping up, and everywhere I turned it was apparent to me that too many people would be affected by my absence if I checked out of life for a few days. It’s one thing for me to be sick and fall behind, but it’s not acceptable to me for others to get behind because I am sick. Thanks to wifi, my laptop, and the impossibility of sleeping in a hospital I’d managed to keep up the charade of business as usual while I was an inpatient, but it was exhausting.

The night I was discharged from the hospital I stayed up past 3am trying to catch up on work, and woke up early the next day for chest PT and another 18 hours of work and catch-up. That set the tone for the next week and a half. By the time I had my discharge follow-up appointment, I’d managed no more than four hours of sleep per night: coughing, wheezing, and fighting for air made it hard to sleep; steroids and stacked nebulizer treatments that make me jittery and wide awake made it even more difficult.

Things were not going well. In the ongoing quest for balance and the negotiation of priorities when it comes to employment and illness, I was floundering. Free-falling, actually.

Since this fall I’ve repeated the mantra of “just make it work.” Find a way to get it done, don’t complain, use every second of time efficiently. When you’re sick, you don’t have the luxury of not working when you don’t feel well, or you’d rarely ever work. People do things even when they don’t feel up to it, that’s part of life. Whatever else happens, just make it work. Get results, don’t make excuses.

And for months, that mantra served me well. I’ve made choices that translate into a consistent 7-day work-week; aside from Thanksgiving Day and two days at Christmas, the last time I had a true day off, including weekends, was sometime last summer. I had (and have) my reasons for these decisions, and do not regret them. I went into this with my eyes wide open and cannot complain about a situation I created. The trade-offs—a big step in academic career development; a second book deal; expansion of my freelance consulting business—are worth the sacrifice.

But all bets are off when my “normal” level of illnesses becomes really acute. Part of it is physical-the exhaustion of infections that last for months, the toll fighting for air takes, the impact of weeks and weeks of poor sleep, hospitalizations, etc.

However, more it is mental and emotional, and is a result of a lifetime of pushing. It’s always jarring for me to go from the hospital right back into “real life” without a chance to stop and process. Since the work always follows me into the hospital (when I was getting stabilized in the ER this last time, my main concern was how to handle my in-person class the next day), it always feels like one big blur.

In a throwback to my old patterns, the longer this recent exacerbation dragged on, the more determined I was to make sure being sick did not impact my ability to do my jobs. When I first got home I turned around 40 rough drafts with substantive comments in two days. I attended meetings and jumped into debates and responded to clients. I’m pretty sure no one knew that days before I’d been hooked up to oxygen or that walking and talking at the same time was not yet possible.

Interestingly, though, the more I built up the façade, the more a little bit of me wished it wasn’t quite so convincing, that I had some sort of buffer. I felt like my grip on things was dangerously tenuous; one tiny slip or extra deadline or new symptom and everything would come crashing down.

For someone so wired to be in control and so focused on not slipping on any of these details, I felt (correction: I still feel) very out of control.

I know something has to give. Even though things are getting a little better by now, I will not fully recover if I keep up this pace. When I found myself negotiating my way out of a second admission last week from the Starbucks at work, armed with a briefcase and a hospital bag (doesn’t everyone bring one of those to work?), I realized I’d reached a tipping point. This is not sustainable. In fact, it’s sort of crazy.

I am not balancing things at all and I know it but I am torn by conflicting responsibilities-to my students, clients, colleagues and myself. I am torn my stubborn pride about never giving in and pragmatism that says if I keep this up I won’t be of much use.

So I have some decisions to make. I have to prioritize my life so I make it through the rest of the semester as effective as I normally am.

And just one good night sleep? That would go a long way, I think.

Where’s the Patient in Health Care Reform?

I’ll admit, it was a bit conspicuous. After over a year of posts comparing facts in health reform, looking at private versus public insurance plans, even meeting with President Bill Clinton to discuss health care, the week the monumental new legislation passes, I am silent.

I know, right?

Here’s the thing. I wanted to comment, to turn on the analytical part of my brain that has logged into press calls and covered health care summits.

However, I was too busy being a patient to attend to this blog. More specifically, I watched late-night cable coverage of the vote from my hospital bed, where hours of stacked medications, oxygen, and all sorts of pwerful drugs tried to stabilize me. I managed one paltry Tweet about it, but my IV beeped as soon as I moved my arm to type and the whole not-getting-enough-air thing made me foggy.

When you’re working so hard for breath, there is little room for anything else.

In a strange way, perhaps that is somewhat fitting. Over the past few weeks, it seems like the rhetoric, the scare tactics, the fighting over funding and abortion and so many other flash points have totally taken the focus away from the one group at the heart of this debate: patients.

“The only people who are happy with their health care are either rich or healthy,” I joked to a relative, one who is vehemently opposed to health care reform (or, at least this version of it). But there is truth there-most health plans are designed for healthy people who rarely need to use them, who do not have to wage appeals and write letters and make so many important life decisions based mainly on the availability of those plans. If health insurance is something you only have to think about when it’s time for open enrollment, then it is a lot easier to shove it off as someone else’s problem.

If you’re fortunate enough to have chronic illness and can afford the platinum plans where you do not worry about annual caps or having treatments denied then you do not live with the same sense of precariousness and vulnerability millions of Americans do.

Let me be clear about this: I have reasonably good insurance and have always been fortunate to have reasonably good insurance. I fight my battles regarding medical necessity (complicated by having rare diseases, for sure) and I still pay a lot of money out of pocket but I cannot complain. However, whether I’m feeling okay or lying in a hospital bed, I work seven days a week in order to get those benefits-a full-time job, part-time jobs, consulting work, and book-writing. I have made huge, career-altering decisions based primarily on health benefits. Physically, emotionally, mentally, I have made compromises and adjustments in the name of health insurance. A lapse in coverage has always been a catastrophic thought for me.

For me, simply being born tagged me with the label of “pre-existing condition” and for three decades I have lived underneath the bureaucratic burden of that title. Knowing that is one fear patients with existing chronic illness don’t have to live with anymore is huge. Knowing that down the line, I could have more flexibility in terms of choosing career options based on proclivity and preference and not benefits is equally huge.

I find so much of the drama around this bill ironic. Some frame it as a right to life issue but because I excel at being the devil’s advocate, what about the lives of millions of Americans that will end too quickly because of lack of appropriate care? Some focus solely on the economic issues around the legislation, but those of us who’ve been paying attention to chronic disease long before it became the hot-button issue for discordance and grandstanding also know that we already spend 75 cents out of every health care dollar on chronic illness and that prevention is much less expensive than the complicated interventions that are standard operating procedure right now.

But honestly? Right now I can’t even start unraveling all these threads.

Intellectually I understand the concerns of, say, small business owners or entrepreneurs worried about how the bill is funded. I understand people who fear the government may not be up to the task of administering such a broad program. I understand this legislation is far from perfect, and as we’ve seen here in Massachusetts, I know that when you implement a sweeping change you need to prepare for the consequences, both intended and unintended.

But all of the rhetoric, analysis, or debate in the world does not change the fact that for many, many patients out there, the debate is anything but rhetorical and the consequences extreme.

I’d done everything right to manage my conditions but still ended up in the hospital. I can only imagine the bill for the diagnostic tests, the x-rays, the IV meds, the nebulizers, the pills, etc. But what is truly unimaginable is what would happen if I had to pay for that hospital stay completely out of pocket.

My house, my health, my family, everything I’ve worked so hard to maintain, would all be threatened.

As I lay there, covered in EKG leads and medical tape and beeping from multiple monitors, the ticker tape reports of the “Baby-killer” outburst and protests flickered across the screen. I adjusted my oxygen and raised the volume a little bit louder as our leaders began to speak.

It is easy to be reactionary and inflammatory when you have the luxury of health, I thought. When you’re consumed with survival mode, suddenly things are a lot more simplified.

As much as I don’t want to be defined by this role, I am a patient. And what better place to be reminded of our vulnerability in this system than in the hospital?

I am one of the lucky ones. I know when the bill arrives or I need to schedule another follow-up appointment with a specialist that these events will be insignificant.

But shouldn’t it be that way for everyone else out there trying to survive?

Hopefully soon I’ll have something more insightful or analytic to add, but for now I am compelled to focus on the one thing that seems to get shoved to the side in all of this: the needs of the patient with existing illness.

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.

When Things Go Awry: Making Sense of Medical Errors

Per the prompt for next week’s Grand Rounds, I’ve been thinking a lot about medical errors and what they do to the relationship between patients and healthcare providers.

Fortunately, I’ve never been involved in the type of medical errors that make the news, like wrong-side surgeries, items left in body cavities after surgery, lethal doses of the wrong medicine, etc. Thankfully, no one in my life has ever experienced anything of this magnitude either. But for every major crack in the system that makes the news, there are many tiny fissures that chip away at its integrity.

In my 28 years of patienthood, I’ve collected my fair share of mishaps and errors: The time I was forgotten about for 20 minutes after a barium swallow test, suspended in the air with my oxygen out of reach several feet away. The time that I was transported to radiology for someone else’s head CT scan, despite repeated protests that my lungs were the problem. The time I woke up during lung surgery (in the recovery unit I’d hoped that horrifying feeling had been a dream. It wasn’t), or the time a loved one was woken up and ordered to take pain medicine that wasn’t hers. I’ll leave delayed diagnoses and altogether wrong diagnoses for another day, because they are more nuanced, less obviously categorized, and especially in the case of delayed diagnoses, less split along lines of culpability.

(And of course there are the minor infringements and indignities: The blood draws that take 3 different techs and leave 8-10 bruises. The CT scans that aren’t where they are supposed to be for pick-up, or the mix-up with test results. Vials of blood dropped on the floor, cultures whose results get lost somewhere in translation, paperwork that is not filled out correctly, bills that belong to other patients that end up on my account…)

Though it relies so heavily on science, medicine is a profoundly human institution, never more so than in those moments when things go wrong. And like most human interactions when things go awry, the reasons usually include pure unintentional accident (who hasn’t pressed the wrong button, misplaced a slip of paper, etc), basic incompetence (there is a learning curve to everything), and what I think are definitely more damaging to the relationship, indifference and pride.

Personally, I am less interested in dissecting what can go wrong than focusing on what to do when it happens. In the macro sense, this could include improved safety protocols (like the checklist before surgeries) and other institutional safeguards. But I’m coming at this from the patient perspective, so I will leave those discussions to others.

No, what I am talking about are the more immediate reactions, how we treat each other when things don’t go as planned. Mistakes will happen but the mistakes themselves are not usually what bother me or stick with me, it’s the way they were handled.

(I recognize, of course, that it is because I have never experienced a major, life-threatening medical error that I can focus on this aspect of things.)

For example, in the wrong CT scan scenario I mentioned earlier, I received two very different responses. The person doing the scan became angry when I repeatedly told her I did not need a brain scan (as forcefully as someone in respiratory distress could), and became angrier when the same thing was told to her from someone higher up in authority. A vulnerable situation—not being able to breathe has a way of making you feel powerless—was made even more so by the fact that my voice was repeatedly ignored.

But moments later, the attending doctor apologized, told me he’d make sure the “patient has altered mental status” comment would be erased from my medical record, and checked in with me later to confirm with me the correction had been made and to apologize again. That’s what I needed—a simple apology and more than that, assurance that the mess had been cleaned up. In the exchange itself, what I needed was a few seconds of listening, an extra minute to confirm my patient ID, or basic recognition that someone who is visibly not breathing well might be onto something when she says it’s her lungs that need checking. I needed to be treated as a person, not a nuisance and not as someone who has absolutely no knowledge or insight into my own body.

If the mix-up had ended when I first got to the room (the transport orderly stared at my ID bracelet for a long time and somehow declared I was the right patient and that the number matched the brain scan patient’s) I would not have cared. After all, mistakes happen, especially in a busy ER. My ID would have been confirmed, I would have gone to get the imaging I needed for my own care, and the patient with the brain tumor would not be wandering around the hospital. It could have been cleared up in a couple of minutes.

But that’s the difference between accidents (reading the wrong number) and events that are the result of indifference or pride. Generally I try to laugh off some of these mishaps; after all, they make a good story and after all, everyone makes mistakes. However, what makes me angry or makes me resentful are the times when the errors are somehow shifted back to me. Whether it’s a doctor, nurse or lab tech doing that to a patient, a teacher doing that to a student, or a boss doing that to an employee (notice the trend here that skews towards issues of balance of power and authority?), it doesn’t make it right and it always damages the relationship.

It’s the same with smaller things like not getting my test results because my blood vials were dropped on the floor, or my name was entered in wrong, or the person who needed to submit form X did not do so. Just let me know and take steps to fix it and I’m on board with you; don’t get irritated with me that you now need to do more work, don’t act like I am an inconvenience to you when I am the one who needs to re-schedule work to come back in for the same tests I just had the day before because of your mistake.

Like every interaction, there are two sides and two avenues for conduct. The way I respond inevitably impacts how the situation resolves itself, too. I can accept the apology or not; I can be calm and reasonable or not; I can differentiate between an unintentional mistake and arrogance or indifference or not. These are distinctions I hope to receive when I make mistakes and errors that impact those around me (students, clients, etc).

Every profession, every interaction between people presents an opportunity for errors. Obviously the stakes are usually much greater when it comes to medical errors, but the basic rules apply nonetheless: Treat people with dignity and respect. Focus on fixing the problem appropriately and moving forward. Be forthright. Sometimes the hardest thing to do is simply say “I’m sorry.” Yet for (non life-threatening) errors, those two words can mean the difference between a blip on the proverbial radar screen and an event that damages trust and fosters resentment.

On Interstate Dining, 80s Music, and Caregivers…

This weekend we completed our first road trip of summer 2008—twelve hours to Michigan for a family function, and twelve hours back just in time to pick up the dogs at their kennel and get to work.

Radio stations and rest stops are the only things that break up the monotony of long car rides—well, that and crossing the Canadian border each way. I know all about the tips for eating gluten-free while traveling in the car, and I dutifully pack nuts and trail mix, bottled water, and fruit.

(I’m irrationally militant about consuming greens at every meal, and after doing this route for a few years now, I can vouch for the Lee, Massachusetts service area with a Fresh City and the Pembroke, NY service area with a Fuddrucker’s as A Chronic Dose-approved salad stops.)

While we may have stocked up on gluten-free snacks, we forgot to bring our iPod adapter or CDs so it was all radio, all the time. In a freakish coincidence that defied station, state, or even country, every single different station that came in played 80s tunes—REO Speedwagon, Chicago, and lots more. Seriously. The songs totally brought me back to my childhood, to driving around in my mother’s cream station wagon, my legs sticking to the leather interior in the summer’s heat.

But we heard one song that has a particularly vivid and visceral memory: “The Power of Love” by Huey Lewis and the News. Whenever I hear it—and this past weekend was no exception—Bam! I’m five years old, a couple of weeks into my several-week stay in isolation due to a serious staph infection spreading from my ears to my brain. It’s brashly sunny in my white room overlooking the Charles River, and I am bored.

There was a playgirl on my floor named Mimi—I’m sure that wasn’t her official title, but that’s what I called her in my head—and since I couldn’t go to the playroom with the other peds patients, she brought special toys and games to me. One time, she brought a small radio and played that song. I still remember her strawberry blond curls and pale skin, still remember the effort she made to bring a little bit of fun into my life.

(As an aside, it’s no irony that the summer before college I volunteered with the Child Life department at Boston Medical Center, where I learned how to engage in therapeutic play on an in-patient floor…and it’s no coincidence that I loved it.)

Anyway, all of this road trip reminiscing is going somewhere, I swear. Clearly I had hospitals and caregiving on my mind this morning when I read this post on Running a Hospital, a note from a family member of a hospital patient who wanted to highlight the exceptional care certain nurses and physicians gave her relative.

I’ve always said it’s the nurses who make or break a hospital stay, and I firmly believe that. They are the ones who attend to our immediate needs, who spend a lot of time reassuring family members and answering questions, who are our advocates and caregivers, and whose gestures, however big or small, can make such a difference in our quality of life as inpatients.

I’ve had nurses who’ve stayed late to give me chest PT when respiratory therapy couldn’t make it, or who brought decorations and festive platters of baked goods and flowers from their own holiday celebrations to cheer up the floor. I’ve had nurses who’ve made me laugh when I desperately needed to, who’ve made me feel comfortable despite extremely uncomfortable symptoms and circumstances, who’ve treated my friends and family as warmly as I would.

I’ve also turned a sharply trained eye to the nurses in charge of the people I care about. Like the letter-writer in the post I mentioned, I’ve appreciated—and remembered—the nurses who soothed their anxiety, prioritized their worries, and responded to their concerns and fears with dignity. I’ve taught several sections of nursing students, and I am always impressed with their passion and enthusiasm for patient care, passion they bring to their classroom discussions and their research projects.

So while the weeks I spent in isolation as a little girl aren’t the best memories I have, certainly, the memory that classic 80s tune conjures up is a good one—it reminds me that for however overwhelming the hospital can be, there are doctors, nurses, physical therapists, child life specialists, and many others whose actions remind us we are people, not solely patients.

Speaking of nursing, interested in basic information on the nursing shortage or chronic illness nursing programs? Check out these links. Just a little bit more summer reading…

Behind Blue Eyes

One of my grandmother’s favorite stories is this:

She and my mother were visiting me at my first post-college apartment. Though the apartment itself was a complete dive in that charming, no-heat-and-mice way only 22-year-olds can consider charming, it was located in a hip, swanky neighborhood next door to an even swankier cheese shop. Armed with brie, gouda, and mozzarella, the three of us stood at the cash register, patiently waiting for our change. The man behind that counter happened to be an amateur photographer, and he asked to take our picture.

“Three sets of blue eyes, three faces so similar all lined up. Three generations. You can’t deny genetics,” he said as he snapped away. My grandmother blushed and smiled proudly.

She brought that story up several times over the past five years, always marveling at how strangers knew we were linked to each other by our blue eyes. I always wished I’d stopped back at the cheese shop and asked for a copy.

One of my favorite stories of my grandmother is this: She was babysitting the three of us while my parents were away. It was dusk on a cold February night and my brothers were playing street hockey. She and I were in the living room, each holding a thick hardcover book on our laps, completely engrossed. For different reasons, we’d both turned to books at early ages and had never let them go.I looked up and saw we were sitting with our legs crossed the same way on each end of the ottoman, our toes tapping along to the music from the Bose stereo in perfect synchrony. We spent an hour like that, never speaking.

Of the three of us, my grandmother’s eyes are the bluest. A piercing blue, not in an icy or severe way but in an intensely expressive one. My mother buys her Talbots sweaters in all shades of blue—turquoise, periwinkle, navy, royal—to bring out the color in her eyes. Now, in her blue and green johnny and flanked by a blue curtain cordoning off her hospital bed, her blue eyes are startling, especially against her pale face.

My grandmother has always been an intensely private person, and her story will remain private here. I will say, though, that from her earliest years she experienced profound losses, the kind of life-defining losses that either shut you down altogether or recast the boundaries of your survival. She didn’t shut down.

She is reserved but not shy, and her face reveals the depth of expressions she otherwise keeps to herself. A life of the eyebrow, a narrowing of the eyelid, a widening between the lashes, a crinkling at the corners—in a glance, dismay, skepticism, joy, whatever she is feeling, is evident. We often tease her about her “drop dead” look, a glance so fierce and penetrating that as children, we only needed to see it for a second to stop whatever we were doing that she found unacceptable. She can still stop my mother in her tracks with it.

Some say I have inherited that look. My husband will have to confirm this.

After the first stroke, she seemed smaller and frailer. Her eyes seemed bluer. She could speak in coherent sentences, but you could see the strain to locate the right words in her face. She scrunched it up, as if so to say to us, “Do you know how annoying this is?” But she talked, nodding emphatically in the right places and following up with questions of her own. We brought her books and magazines, but for the first time in her reading life, they were left untouched.

The human brain is an uncanny captor. After the second stoke this week, she lost the use of her right side. She cannot speak, but expends huge amounts of effort trying to make herself understood. She shook her left fist in frustration today. “I’m not going anywhere. It’s okay. You can take your time and try again,” I told her. And softer, so my mother did not hear, “Don’t be scared.”

She nodded slightly.

“Every time I see you, Dolls, your eyes are bluer than ever.” I started saying this, using her nickname, in the hospital this summer and then it became our little thing—every visit to the rehab and the nursing home began with it. I tell her this again today, and she blinks at me. She knows.

She no longer has the ability to swallow and cannot take anything, even juice, by mouth, because she aspirates it. If you cannot swallow and you have put in writing you do not want a G-tube, suddenly the timeframe and the options available in it are much smaller.

So it is a period of difficult decision-making, and we talk about what is going on in front of her. He brain will not allow her to swallow or speak, but it allows her to know what is going on. I’m not sure if that is better or worse, because the things we say are frank.

I kissed her head and told her I will be back tomorrow. “I love you,” I said. She met my eyes and held my gaze. “I know,” she told me without saying a word.

From Hospital to Hub

So as some of you may have suspected given the gap in posts, my chant did not quite serve me in good stead. I spent the weekend before last in the hospital, which broke my longest streak ever (14 months) in terms of being hospital free, but all was not lost.

Certainly there were a few bumps: no, bronchiectasis and bronchitis are not the same thing so writing down the latter when I have the former during triage is not exactly helpful, and yes, the belligerent man in handcuffs in the next room wailing at the top his lungs, swearing, and hurling various insults and epitephs at the nurses and doctors trying to help him did unnerve the rest of us a bit.

But overall, collateral damage was minimal—I didn’t have to stay too long, and after intense negotiations, they agreed to avoid steroids and pursue another combination of treatment methods. I think I raised some eyebrows—I couldn’t breathe but was still trying to debate the issue anyway—but really, treating an infection and flare-up in a PCD/bronc patient does not depend on the exact same approach used in treating an asthmatic, and I just wanted them to understand that. I can’t say I blame them; how many PCD/bronc patients pass through their ER on a regular basis?

In the week since my discharge and initial progress, my symptoms haven’t improved in any discernable way, but life has been too interesting and jam-packed for me to care. Friday I was in New York to meet with my agent and editor to discuss my book. I had no voice (seriously, we’re talking Croaker here), coughed every two minutes or so, and was so pale I scared myself when I looked in the mirror.

But here’s the great thing: My agent and my editor know I’m sick. In fact, that’s one of the reasons why they think I’m the right person to write a book about living with chronic illness for people in their 20s and 30s and how this generation of patients is changing medicine, the work place, and society. After hours of dirty looks on the train ride down because of my cough, not feeling like I had to explain myself was a pleasant relief. Oh, and the lunch and the conversation were wonderful. I went back to my hotel feeling like I’d discovered my writerly voice again. (At least one of my voices was back in action).

To add to the bliss, we met up with friends at what I consider celiac heaven: Risotteria, this amazing restaurant in the West Village that serves a dizzying array of risotto dishes, gluten-free pizza, breadsticks, and paninis and the most indulgent GF desserts. My only regret is that my sense of taste was muted given my lingering plague, but oh the consistency! Biting into thin, crispy pizza that had just the right amount of chew to it is a sensation I have missed since going gluten-free. The true litmus test? The group had to question for a minute if the breadsticks were GF or not—if they are so good that “normal” eaters have to question, then we’re talking seriously good.

I pulled into Penn Station with a lot of symptoms, a huge bag of meds, my nebulizer, and a lot of other paraphernalia. I’d been nervous all week about missing the trip and lamenting the timing of my infection, but it all worked out. Illness was ever-present, but I rested when I needed to, took cabs when I couldn’t walk, and I didn’t apologize endlessly for doing so. The sunshine, the good food, and the mix of business and pleasure outweighed all the symptoms I couldn’t leave at home.

I Will Not End Up in the Hospital, I Will Not End Up in the Hospital, I Will Not…

That’s my chant for this week and so far, it’s working. (I’m tempted to be droll and say “But I’m not holding my breath” because of course if I could breathe and hold my breath at will, I wouldn’t need this chant, would I?)

Things are amiss in lung land. The evidence is all over our house: the nebulizer is in the living room instead of its discreet home in our bedroom and little empty plastic vials of Xopenex line the end table next to the tubing; various containers and “spit cups” are stationed in every room (don’t worry, the used ones are whisked away); my living room couch has become my office, a migration that only occurs when I am really feeling badly; tissues, a thermometer, inhalers and my peak flow meter are cluttering the coffee table; and by the end of the day, I am hoping that my new meds in their crinkly Walgreens pharmacy bags will add to the general disarray.

I haven’t been this excited to see the guy who does my chest PT in months. I also haven’t been this appreciative of my schedule, which allows me to work from home on Tuesdays, in a long time.

I joke that I get the plague each winter, but considering Easter was colder than Christmas this year, my lungs seem to be following suit. The low-grade plague I’ve battled since November has resisted several rounds of antibiotics and everything else I’ve thrown at it, but things reached a crescendo this Sunday, when I spent eight hours coughing and couldn’t walk from bed to bath without tightening up and getting really winded. Now, I don’t mind coughing any more than the average respiratory patient does—after all, it’s an occupational hazard, no?—but when it’s more spastic than productive and when little flecks of blood appear in whatever does manage to come up, I’m not pleased.

It’s not so much the hospital I dread as the requisite steroids that accompany a trip. It has taken me so many painstaking months to even begin to normalize after the two-year adrenal failure caused by the twenty-year pounding of toxic doses of steroids, and I will do just about anything to avoid them.

“Clearly if my choices came down to needing steroids in a life-threatening situation and dealing with all the effects of them or not surviving, I’d take steroids,” I said by way of reassuring my husband that even my zealot tendencies have a limit, but he looked less than thrilled with the bluntness of my statement.

So let’s hope the nebs, the inhalers, the chest PT, the new meds and everything else get me through the next few days. I’m in this precarious place where things could easily go either way, and it’s really an annoying feeling.

Coincidentally, I was re-reading the thoroughly engrossing and moving Breathing for a Living recently, CF patient Laura Rothenberg’s memoir (more on this at some point), and I realized I don’t write directly about my lungs all that much. Reading this book made me think long and hard about my lungs, and I felt alternately grateful for them and protective of them. Sure, I mention peak flows, or casually refer to not being able to breathe easily, but they are rarely the star in my posts….which is weird, since many of my other medical problems begin and end with PCD, bronciectasis, or some combination of treatments for them, and which is also weird because while a lot of my other conditions are annoyingly chronic, they aren’t the ones that have landed me in the ICU, they aren’t the ones that sometimes, when I think long-term, make me nervous.

Maybe it’s because they are always there, because even on my “good” days I still wheeze and cough and feel them, there isn’t too much to report. They’re a constant, and constantly talking about what is constant would be…well, boring. What makes Breathing for a Living so powerful and engaging is that it isn’t a book of symptoms and reports…it uses those medical changes and fluctuations (especially pronounced in a double lung transplant patient) to propel a larger story, a larger, more compelling struggle than the symptoms alone could ever be.

Either way, my own lungs won’t let me ignore them today. Let’s just hope I win this week’s battle of wills.

New Year’s Anniversaries

For a long time, the holiday season was more than simply a time to decorate the house, see lots of family and friends, and engage in all the rituals and traditions we hold dear. It was also synonymous with being in the hospital—for seven out of the last eight years, I’ve spent either Thanksgiving and Christmas or the days before and after them in the dreary world of the hospital.

Between end-of-semester craziness, grueling hours, all the associated extras of this time of year, and the infections and viruses that go hand in hand with the colder months, I didn’t stand a chance of getting an infection and not ending up in the ER or the inpatient floor.

While Christmas and Thanksgiving and all the time in between are marked by illness, New Year’s has started to take on much more positive associations for me. Three years ago on New Year’s Eve, I met the man who would become my husband. (See the article about this published in the Boston Globe Magazine here). With that meeting, my life began to turn around. Right round the same time, I was diagnosed with PCD and celiac disease, started my daily chest PT and rigorous new medication regimen, and finally began to fully understand why I had always been so sick. Just as my medical history finally started to make sense and I was on the right track in terms of establishing some stability, my love life fell into place as well.

Since then, New Year’s Eve has been much more meaningful to me—I’ve always hated the stupid hats, noisemakers, and inevitably disappointing parties that symbolize typical New Year’s revelry. But now it’s the anniversary of when I met John and stands for the period in my life when things started to change for the better in every sense—which, by the way, is no coincidence.

Every New Year’s since then I try to build on that sense of renewal and hope and try to build on the gains in my health (and my relationship and professional life) that I started to accumulate three years ago.

Last New Year’s Day I needed to go to the hospital. However, unlike most of the trips of my holiday past, I was only there overnight. This New Year’s was a huge milestone for me because it marked exactly one year since I’ve needed to be hospitalized for respiratory problems. Sure, I’ve had plenty of nasty infections, lots of bad days, and new complications. But I’ve been able to maintain a stable prognosis for 12 months, something I haven’t been able to say in more than a decade—here’s hoping 2007 continues the trend.

For all you chronic people out there, no matter what your goals for 2007 are in terms of maintaining your best health, lots of luck!