Author Archives: ledwards

Down the Rabbit Hole: When Chronic Illness and Work Conflict

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“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?

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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.

Doctors as Advocates?

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Yikes. It’s been awhile.

How are you?

Usually when I have gaps it means a few things: I don’t have too much I want to say and don’t want to post minutiae (I still want to be useful); I am acutely sick; or I have too many ideas and can’t get out of my own way.

In this case, a combination of a flooded house (hello, epic rain and no electricity!), an infection, and a lot of thoughts that needed time to marinate lest they come out as an unproductive rant equaled silence.

It’s been awhile since I’ve written about the doctor-patient relationship, an important subject in Life Disrupted.

For the most part, that’s because I’ve had such good experiences the past couple years with doctors who don’t just manage my diseases with me but work towards helping me meet my specific life goals. When things don’t work, we change them up. When we’re up against a wall, we find a new way to try to improve my quality of life. When the conversations are difficult and the risks overwhelming, we talk things through. A lot.

This is what has me stewing. A loved one underwent major surgery recently, the third major surgery in two years. It was a complicated, grueling surgery that necessitated significant nerve, disc, and hardware involvement in the spine. The doctor, whom we’ll call Dr. Brilliant Surgeon (or, Dr. BS, which is supremely fitting) is just that- a brilliant surgeon. But in my opinion, he’s not a very good doctor.

For example, it took three weeks to follow up with the results of a CT scan that showed tremendous problems, even though his office knew the patient was in incapacitating, wheel chair-inducing pain and needed some answers on what to do. The excuse? The office was undergoing new training and couldn’t respond to phone calls.

My response? When you have a patient who cannot walk and whose life has grounded to a halt until you report back, you find the time to make a phone call. You make the time, as it were.

For example, literally minutes before the patient was wheeled into the OR, the doctor announced that the surgery he was about to perform would be much more complicated and its success would be much more limited than the patient had been told would be the case for weeks. I understand he was doing what he felt he had to do while he was in there and I agree it needed to be done. However, three minutes is not a fair amount of time to process a huge change and a completely different set of expectations, especially when the test results that dictated the change had been available for a long time. Having a scared, anxious patient who now feels everything has changed and there is no control over the situation is not the optimal way to start a surgery, and since this was not an emergency, there was no need for things to unfold that way.

For example, after the almost six-hour surgery the patient spent several days in the hospital before going to a rehab. Not once did Dr. Brilliant Surgeon check in on the patient to see how she was doing physically (never mind emotionally.) Apparently, it is “not his policy” to follow up, and those quotes are direct.

Does that rub anyone else the wrong way? The way I see it, a patient is still a doctor’s patient before and after the OR.

Or perhaps my expectations for Dr. BS are out of whack?

I am not one to indiscriminately doctor-bash. That is not helpful for productive. But watching this person suffer, and knowing even a tiny portion of that suffering would have been less if this doctor had taken the time to communicate or care, leaves me feeling angry and frustrated.

Contrast these examples to a conversation I had with a new doctor of mine the other day. I was discussing my lung doctor with him, since I knew they would be communicating with each other at some point in the near future.

“He’s the best. He’s such an advocate for me,” I said, without even realizing how much I was summing up in those few words.

For as much as I’ve written about the need for communication, for good rapport, for someone willing to think outside the box, this quality is just as important in a doctor. An advocate is someone who invests his or her time in your particular battles and helps you fight them, who invests in your success and recognizes the importance of your goals and priorities.

An advocate is someone who is willing to make an extra phone call, or write an extra letter, or set aside time to consult if it means that ultimately, you will receive the care you need.

An advocate is someone who realizes there is a lot more to a successful outcome (surgical or otherwise) than simply what data reveals.

We all deserve advocates.

Who Would I Be Without Illness?

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For this week’s Patients For a Moment, founder Duncan Cross asks the question,

Who would you be without your illness?

He goes on to write, There’s a lot of emphasis in our community about staying positive, looking towards the future, optimism, et cetera – all of which has merit. But too much deliberate cheeriness denies us the ability to think and talk about what we’ve lost to our illnesses. We lose our ability to grieve for the person we wished to be, which seems to me an important part of adjusting to our circumstances. So the topic this time is that person, and how they would better, worse, or simply different than the person you are now?

Duncan Cross is one of the best patient bloggers on the Internet, in my humble opinion, and I’m glad he’s probing all of us like this because I too am bothered by the tendency to sugarcoat realities of illness among silver linings or attach maudlin sentiments to what can be demanding, painful circumstances.

I’ve mulled this question over several times the past few days. Indirectly, like in this post on illness and personality, I’ve touched on this question before.

Who would I be without illness?

When you’ve been sick your entire life, that becomes a much harder question to answer. I can’t mourn the “before” I never had, and I don’t spend much time speculating on the person I could have been otherwise because I am busy being and surviving. Illness has always been there, one of the few constants that remained predictable only in its unpredictability despite the many other changes in my life: high school, college, graduate school, career, marriage.

While I am at a point where illness is not the defining characteristic of my life, (and I know this because pushing back against or despite illness is no longer the main motivating force behind most of my decisions) clearly it is still present in nearly all of my choices and compromises.

It is impossible to pull illness out of the many threads that combine to make up the past thirty years, to take it away and see what would remain.

Certainly I can look at the accumulated losses over the years and see what could have been in those moments: all the birthdays, showers, holidays, vacations, weekend plans, family gatherings, and months of school I’ve missed over the years, all the disappointments that had me crying into my pillow as teenager and keep me awake at night as an adult.

There are definitely times when I wish those basic rights of passage that we often associate with living a “normal” life didn’t have to be so hard: What would it have been like to graduate from college with the same good GPA without having to study for tests in the ICU, or graduate from high school without a full year and half of it taken away from me, a blur of missed opportunities and make-up work?

What would it be like to live a life that wasn’t always in a state of catching up?

Or, what would it have been like to marry my husband without the “in sickness and in health” part of the vows already such an obvious and omnipresent part of our relationship? What would it feel like to dream about a future family with him without having to weigh so many competing risks and priorities, to be able to speak confidently in the language of “when” and not “if”?

And yet…

I know, here’s where you’re half-expecting, half-cringing, thinking I am going to say but it’s all been worth it and I’ve learned so much and I am a stronger person for it.

Don’t worry, didn’t I say earlier I don’t like a saccharine gloss applied to illness?

I don’t. Of course it would be nice to not have to fight so hard just to get to the starting line all the time. Of course I’ve had my fair share of anger and frustration and grief over that, and of course I realize that with progressive diseases those frustrations will grow more complicated.

That’s life. That’s the only life I’ve known and it’s the same life I grew up seeing for other family members.

There are some things I do know. For example, I’ve made a lot of negotiations in my career to accommodate illness and I know I might have made different choices if I were healthy, but I also know that no matter what else I might be doing, I would still be a writer. I would still have strong relationships with wonderful people, and who knows what other life obstacles would test our relationships besides illness.

I would still be a stubborn pain in the neck.

The thing is, I do not have regrets. I am proud of what I’ve been able to do and for me, to wish for what might have been, to wish for some hypothetical, abstract notion of “healthy,” chips away at what I have done.

For thirty years I have lived my life in extremes, and in the brief periods where things are stable I catch glimpses of what it would be like to live somewhere closer to the middle. So maybe that would be me minus illness, someone less extreme? But that could also mean someone with less determination or, as my husband says about me when I am exasperating, someone less feisty.

And I don’t know that I would want to make that compromise. My biggest strengths are indeed my biggest weaknesses and while illness may amplify those, I don’t think I’d want to be me without them.

Why I Participate in Medical Research

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Um, it’s March.

How did that happen? In a blink, the late classes that used to start when it was dark now only end in the shadows of dusk, and tiny shoots of early spring flowers are poking through slushy dirt.

It’s been awhile. Actually, it’s been the longest stretch of time in between posts I think I’ve ever had. Usually, silence equals bad news in my world, but thankfully my absence is not the result of acute illness and fragmentation like it was when I made my confessions here last March.

Instead, it’s just a lot of medium-sized things piling up, leaving me standing in a pile of excuses and hating hearing the words coming out of my mouth.

You see, I meant to write a post this weekend in honor of Rare Disease Day, a cause that means so much to me. But I was out of town and then I got glutened, which totally threw me off my game. It’s a few days late, but my meek attempt at fulfilling an obligation I feel strongly about is to instead point you to my Rare Disease Day post from last year, since all the points still ring true.

(How ironic is it that on the heels of my last post on restaurants doing more to accommodate food allergies I went and got glutened for the first time in quite awhile? And this was after speaking with both an employee and a manager and being assured beyond all doubt the marinade on the chicken did not have wheat. Super. I know it wasn’t the lettuce underneath the chicken that made me wretchedly ill…)

And I meant to write and submit a post for this edition of Patients For a Moment that answered the questions: What is your relationship to illness? Is there a particular time when you wish illness wasn’t in the picture? Or is there a time when you find it’s easy to forget about illness?

But I didn’t, because each night that week I came home with the best of intentions but by the time I battled traffic and had chest PT it was already 8pm and I hadn’t started dinner and my work inbox needed me and man, my brain was tired. And as much as I wanted to elegantly dissect the ramifications of being a lifelong patient and never knowing what it was like to live without illness as my near-constant companion, I couldn’t get the words from my brain to the screen.

See? Excuses. Valid and truthful, yes, but in the end, meaningless.

But there’s something else I’ve been doing the past few weeks (months, really) that I don’t need to make excuses for, something that relates to the Rare Disease Day and to our identities as patients.

I’ve been participating in research studies. From broad public health studies launched in the ER to short, three-week surveys to long-term trials with blood work and follow-ups, I’ve jumped in whenever I’ve been approached by a research assistant. Sometimes, the studies have little value to my personal situation but are part of worthwhile projects in communicable diseases or prevention. Other times, the studies are directly related to what I live with and am going through.

I am not exaggerating when I say I wouldn’t be alive and certainly wouldn’t have the quality of life I do have were it not for medical research, for the thousands of participants or “subjects” who have volunteered for studies before me and for the researchers and scientists who launch these investigations.

From my point of view, any time I can participate in a research study it’s a tiny way of giving back, and of hopefully contributing to something that will positively impact other patients down the road.

For rare disease patients, the need for research is especially critical. So it may be a few days late and it may not be an official Rare Disease Day post, but consider this my public service announcement for the week.

And at least this is something I don’t have a lame excuse for these days!

Gluten-Free Dining, With a Side of Controversy

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A couple of years ago, I wrote about proposed legislation that aimed to increase food allergy awareness and ingredient familiarity in restaurant kitchens. Championed by superstar chef and food allergy advocate Ming Tsai, the proposed bill would also ask restaurants to put a notice to customers on the menu that it is their obligation to inform their server of any food allergies.

At the time, I wrote “As customers, it is our job to advocate for ourselves, ask questions, and disclose relevant information, just as it is the responsibility of servers and kitchen staff to try to answer our questions as thoroughly as possible and accommodate us as much as can be reasonably expected. This bill makes that process a lot easier.”

And I still strongly believe that. Between understanding and preventing cross-contamination to keeping a master list of all ingredients, such moves make the dining experience easier for both the customer and the wait staff, who would have access to a lot more information when customers inquire about the menu. It’s about shared responsibility.

Imagine, then, how pleased I was last week when I saw this update in the Boston Globe about how the Mass Department of Public Health plans to implement these changes this summer.

(And, coincidentally, having just dined at Ming Tsai’s Blue Ginger again recently, I can vouch for how stress-free and relaxing the experience it is when you know your meal is safe.)

Perhaps I am just naïve, but what I was not prepared for were the angry, ignorant, and vitriolic comments readers left at the end of the article. Sure, there were comments that applauded the measures and saw the potential, but I was shocked at how many were so passionately awful about it. For some, it seems that any legislation, whether it directly affects them or not, is anathema and is yet another example of the “nanny state” liberal politics in Massachusetts.

Whatever.

Here’s the rub: if you don’t have food allergies, you don’t have to ask any questions, and nothing about the food you would have ordered anyway will change. This bill isn’t an iteration of Big Brother and won’t dictate what you eat, it will simply make it safer for others with food allergies to order food, and will make it easier for kitchens to share information about their ingredients.

Others complained that waiters will have to now explain the entire menu to everyone, or that the private sector should not have to cater to people with food allergies with the government looking over their shoulder.

Huh?

Only people with food allergies and specific questions about dishes will need explanations, and if that’s not you, why do you care? And if someone in your dining party has allergies, why would you begrudge that person his or her questions?

I just don’t see how training kitchen staff on clean cross-contamination measures or having a comprehensive list of ingredients on hand is forcing the private sector to cater to us.

I’ve lived with a diagnosis of celiac disease for six years and I’ve learned a lot about how to eat gluten-free. Through trial and error, I’ve also learned how to eat out safely and with confidence. I love it when places have GF menus, but I don’t expect them. I go out knowing the risks and am fully responsible for them. I alert my server of my issue and ask questions politely. I’m not demanding, and if all I can eat is a salad (and that rarely happens these days), I am fine with that.

I don’t expect staff to cater to me, and I don’t get bent out of shape when it turns out there isn’t much to eat. That’s the risk I take when I go to restaurants without GF menus.

But what I do expect? I expect that when I ask a few simple questions, the staff will be able to answer them. I expect that when I am expressly told something is GF that it truly is safe, and hasn’t been cross-contaminated. Implicitly, that means the kitchen understands that telling me something is GF means they’re telling me I won’t get sick. If this bill streamlines this process for all parties involved, that’s great.

Fortunately, my risks are not potentially life-threatening the way they are for others with severe food allergies. I take them extremely seriously, but if some uninformed waiter serves me food that contains gluten, I will be sick for a few days. It’s unpleasant and unnecessary but in the immediate moment, it won’t kill me.

Others aren’t so lucky. Is it really that inconvenient to make sure the people preparing the food know what’s in it?

My personal favorite of the comments went something like this: Shouldn’t people with allergies know that?

We’re not under any illusions our dining staff should be responsible for diagnosing us. We’re well aware of our situation and that’s why we disclose any allergies and ask questions.

I was once on a plane with a man who was outraged he couldn’t eat peanuts on the flight because someone on board had such a severe allergy he/she could experience anaphylaxis from being near them. He didn’t even have peanuts; he was incensed that someone’s life precluded his right to eat hypothetical peanuts.

Yikes.

To all the angry, put-out people out there, perhaps if they were to develop food allergies they would refrain from eating outside their home. But if they are ever in the position where they want to be social and go out to eat and what they eat could hurt them, I hope for their sakes they receive the correct information.

Give and Take

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Selena at Oh My Aches and Pains is hosting the next edition of Patients For A Moment, the patient blog carnival.

In the spirit of Valentine’s Day and all things related to love, she posed the following question:

Love? Hate? What are the four letter words you use to describe your life with chronic illness?

I’ve been thinking a lot about those two words, love and hate, and how they figure into my perspective. After careful consideration, I don’t think either of them are the four-letter words I’d choose to describe my life with chronic illness.

Certainly, they are a part of my life. I’m not trying to pretend otherwise.

For instance, I don’t like when I have to miss things or cancel much-anticipated plans or let people down when I am sick. I dislike how overwhelmed I get when things are acute and work and frustration and guilt pile up, and I cannot take anything for granted, including the small things healthy people wouldn’t have to worry about. I don’t like that my first intact childhood memory is from a surgery when I was a toddler, and that I can mark many holidays depending on which hospital I was in and for how long.

But even in the moments when all the varied losses seem like more, they are usually smaller grievances. Hate is too strong a word. Or perhaps there is enough resignation (or experience?) built in after three decades that it does not need to escalate to that point.

I love that despite illness I am doing many things I am passionate about and have created a life that is (too) full. I am fortunate to have found somewhat of a balance between what I need to do for my body and what I need to do for my mind.

I love that after 29 years of surgeries, infections, and setbacks I am in a relatively good groove with the best doctors available to manage my definitive diagnoses. I love that after 23 years of near-constant high-dose steroid therapy I have a break, and the highs and lows are much smoother.

I love that I am married to a person who sees me as a whole person and not a constellation of symptoms, whose compassion and selflessness is intuitive and instinctive.

I love that there are people who know me as a relative or friend, a writer or editor, a professor or consultant, but don’t automatically think of me as “sick.”

And I appreciate that when things are tough and crises occur, they do think of me as sick and understand my situation enough to know homeostasis will return at some point.

So if I had to pick other four-letter words to describe life with illness, mine would “give” and “take.” Illness takes away little pieces of the identity I’ve worked hard to build and I push back and reclaim them. Illness makes demands on me and those in my life and we acquiesce when it is prudent to, and move forward despite those demands we can.

I am no Pollyanna and I won’t pretend that I wouldn’t love to be healthy. But, I love that I do not have to hate my illnesses…that would be giving them too much.

Getting Out of My Own Way

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I’ve noticed a pattern the past couple of weeks.

I have a lot to say. From following up on the issue of chronic illness and parenting to re-visiting that lofty January goal of balance to so many others things, I do not suffer from lack of ideas.

And yet, whenever it’s time to settle down and crank out a post, I end up reading. Sometimes it’s Penelope Trunk or Dawn Friedman, sometimes it’s Kairol Rostenthal or Duncan Cross or Sick Momma.

What can I say? I’m eclectic.

It’s not an issue of being too sick to write, like I am sometimes, nor is it an issue of competing priorities. (I think I’ve forsaken the idea of negotiating them right now, anyway.)

Instead, it’s idea overload.

And in a much more exaggerated way, the same thing is happening with what appears in my mind as full caps, the much longed-for and equally feared BOOK 2.

I’ve discovered something: I really love research. Getting lost in journals, tracking down archived information, furiously annotating books (and books, and books). Of course I love the writing part, but that was a given. The more research I do, the more I want to write, the more the ideas develop and complicate each other in ways I didn’t foresee.

But the past couple of weeks I’ve found that I’ve used research as a distraction, something tangible I can say I’m doing for the oh-so-demanding BOOK 2, something I know is important to the overall process.

But deep down I know I’m doing it because I have so many ideas in my head, so many images of what material I’ll add to which paragraph and which interviews will flow best, that I’m running in circles.

Now, I’ve tried to be proactive about this. I diligently schedule in daily chunks of writing time, even if it means pulling back-to-back 7-8 hour workdays on the weekend. I precisely list the topics I need to address on a particular day.

I even recently hired a research assistant, who is fabulous and competent and efficient. I make lists for her, and she skillfully completes the tasks and gets me the information I need.

(I know! It’s the best.thing.ever.)

And yet I remain trapped in my own head, word counts taunting me and stacks of research beckoning me.

One of my students wrote recently that the hardest part is the doing—after free-writing and just seeing what comes about is the best way she can eventually get around to her point.

I think that could be the solution. I’m so immersed in ideas that I’m hemming myself in. I need to let go and see what happens, with less analyzing what I need to write or should write and more barebones writing.

Letting go is never easy for me. (Seriously. Ask my husband when it’s midnight and I’m obsessing about something.)

So, deep breath. Write now, worry about structure and voice and perfection later.

At least I got this piece done. It’s a start.

Writers, researchers, and kindred control freaks everywhere, any other tips?

The Importance of Being Useful

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I went in for a lung check-up the other day and something truly unusual happened: I was quiet. Well, of course I really mean my lungs were quiet, because it was a very early appointment and my lungs are tight and quiet in the morning and get progressively wheezy and junky as the day unfolds.

I’d never had an appointment so early in the morning without an acute infection making things noisy.

“I’ve never heard you so quiet,” my doctor said. (After we’d talked about my book research, my other jobs, his grant writing, and lots of other stuff, because he’s the best.doctor.ever.)

“Ah, welcome to the morning lungs. My physical therapist always tells me I have two sets of lungs with totally different personalities, the 6am set and the 6pm set,” I said.

We moved on to other topics, but as I drove home, I thought about the many different sides there are to any illness, and any patient. I can be a wheezing, hacking, choking mess at night when my therapist arrives, but if you saw me at noon on a good day you might not even suspect anything was wrong.

That got me thinking about the days before my diagnosis, when there was only one “lung personality”—out of control. There was no chest PT, no understanding of the causes of my inflammation and infection or the complicated ways in which many of my medical problems were intertwined.

A few months ago, I wrote this post on disappointment, and the importance of writing a new script for ourselves, even when we might not want to. But I now realize that sometimes it works the other way around: sometimes good things happen, and we change our script in ways that make our lives better…but that doesn’t make it any less of a transition.

I was elated when, after months of diagnostic tests and procedures and a lifetime of serious illness, I got the right labels, the ones that matched my actual experience of illness. I was no longer the mystery lung patient, dodging whispers of supposed noncompliance and literally living on toxic doses of steroids.

But as awesome as it was, it took me some time to accept it was real, this newfound clarity. It took months for me to believe my rigorous daily regimen would actually improve my quality of life, that “normal life” could be something other than the snippets of time that occurred in between prolonged hospitalizations. I thrived in my new life post-diagnosis, but a tiny part of me, the part still fighting for self-preservation, kept wondering when things would fall apart again.

That’s not to say things haven’t been hard or my health hasn’t deteriorated, but several years later, I no longer doubt things in the same way. I’m realistic about my situation, but I also do not expect calamity to be an automatic part of my life.

I am not defined by labels so much as aware of their power to both limit and liberate. Sometimes good things happen in unexpected circumstances and you just have to let go and allow yourself the chance to live out the new script. Of course my PCD/bronc diagnosis is just one example of many, but it’s the one that seems most illustrative to me today.

The other day, the always interesting and often controversial Penelope Trunk had offered this pithy bit of advice on her blog: “You should be useful to readers each time you post. It feels better. For everyone.”

That’s something I think about often when I post. So, readers, I guess the take-away from this extended anecdote is this, something I’ve said before:

It is not unreasonable to hope for good things. That’s true in all aspects of life, but sometimes when you live with chronic illness, it’s an important reminder…and hopefully, it’s useful one, too.

Bigger Things

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I’ve been quiet lately, which is sort of surprising, given how fired up I was in my last post on chronic illness and parenthood. Thank you so much to everyone who commented; your insights on an emotional and sensitive topic were so honest, and started up a worthwhile conversation. I actually have several follow-up posts in various stages of completion, so stay tuned.

This week I can’t quite muster up the right words and phrases to balance out emotion and reason. Partly, I am sick. Partly, I’m adjusting to a new work schedule and deadlines. But more than that, I find writing about any of that feels trivial in comparison to what’s happening elsewhere, particularly Haiti. So much of living with and thinking about chronic illness emphasizes the “chronic” part—the ongoing waxing and waning of symptoms, the long struggles to find balance.

And then something catastrophic happens, and the implications of the word “acute” are crystallized. So I’m doing less writing and more reading. My home state (Massachusetts, which is getting a lot of press given a certain recent election and its implications on health reform) is home to the third-largest Haitian population in the country, but unlike many, I do not have any personal ties.

Instead, my introduction to Haiti came from the pages of one of my favorite books, one I’ve discussed before: Mountains Beyond Mountains. Tracy Kidder’s narrative tale about Dr. Paul Farmer and his transformative work in Haiti with Partners in Health captivated me and so many other readers, and when word broke of the massive earthquake, PIH and the already struggling public health situation in Haiti were some of my first thoughts.

PIH’s Stand With Haiti relief efforthas many opportunities to help, and with over twenty years of experience on the ground in Haiti, the team knows how to prioritize needs. Tracy Kidder’s recent post on the Haiti earthquake is also worth a read.

With aftershocks still threatening and continued delays in getting aid to those who need it, there is still plenty of urgency and many professional and medical organizations mobilizing support.

Daily life continues in our world, and headlines about political upsets dominate, but there are things happening that transcend state and national politics, blog posts full of minutiae, or the Conan-Leno fiasco. Sometimes it’s a matter of humanity.