Author Archives: ledwards

At Least I Know Myself….

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There are some things in life I am constitutionally opposed to: cartwheels (can only do them in water), math (you already knew this!), fried food (even before the celiac diagnosis), decaf coffee (what’s the point?), reading maps (I go by landmarks), and little things that may not relate to physical constitution per se but grate on me nonetheless, like when people use “it’s” when they mean “its” and the gratuitous use of the phrase “myriad of”–constitutionally speaking, I am a dork, I suppose.

But there are two huge things I don’t tolerate well that I have saved for last: humidity and relaxation. As it is summer in Boston and I have just turned in the draft of The Book, I am facing both of them at the same time. What’s a Type A girl with dodgy lungs to do?

Most people love the advent of summer–the flip-flops, the free concerts in Copley Square, the ice creams and flowers and outdoor dining. I like all of those things, too, but I am a hostage to humidity. Once the temperature rises, I know days of sequestering myself in my air-conditioned condo and only leaving to take advantage of my air-conditioned gym are in store. The humidity literally takes my breath away; I step out the door and my airways seem to snap shut. I wheeze louder, cough more, and assume the ghostly pallor of not getting enough air that stands out even more since everyone else is tan. I get excited for the cool, cloudy days everyone else bemoans because I can take long walks outside, and I favor the beach late in the day when everyone else is leaving because the air is better.

And relaxation? I like to do a lot of things: walk the dog, go to restaurants, play games, get coffee with friends, etc. It’s the doing nothing part that’s difficult. I get edgy and antsy–there is work I could be doing, there are projects I should be starting, there are so many things I could do with this time. I am so used to multi-tasking and juggling a million different things that it actually feels weird to watch a TV show with my husband without simultaneously checking e-mail, making to do lists, and jotting down notes for revisions. I think the fact that our wireless router stopped working this week has been good for me, painful as it has been.

I even brought my laptop on our honeymoon. There. I said it. (Cue sheepish blush).

But before you start to wonder why my husband ever married me in the first place, I will admit I didn’t actually use it very much. In fact, the only time I logged on the Internet was to make sure my enrollment in my new husband’s health care was processed immediately. (I know, very romantic, but necessary. Illness doesn’t give a fig about honeymoons). But just knowing my laptop was near me at all times had a calming effect, and I am proud I didn’t spill any of Napa Valley’s finest on it.

And yet here I am, facing down several days of vacation and humidity. I’ve got dinner reservations, activities planned, and multiple wardrobe changes to “relax” my way, and new antibiotics, a Vest, a nebulizer, and central air to combat the humidity and an annoying summer infection.

Between you and me, I’m happy with a week’s worth of good meals, Scrabble, and some hiking (off-peak hours, of course). And the laptop.

Independent…Or Just In Denial?

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How does pain affect your independence? Do you push yourself too hard? Do you hide the fact that you’re in pain? Is it hard to ask for help?

I was invited to address these questions, along with several other people who blog about pain, by HowToCopeWithPain. To see all the other posts, go to the HowToCopeWithPain.org/blog.

Since July 4th is a day dedicated to the idea of independence, for patients it is the perfect opportunity to explore the intersection of pain and independence. I’ve had an on again, off again relationship with pain for over a decade now. I grew up with the pain of the broken bones high doses of steroids caused, the pain of coughing so hard my throat became raw, and the pain of tendonitis and ailments like that. But these were temporary dalliances, not full-blown affairs, and I treated them as minor disruptions.

It wasn’t until I developed chronic fatigue syndrome (CFS) in high school that our relationship was sealed in a more permanent way. Unlike the temporary pain of a broken wrist or a reconstructed ankle, my muscle and joint pain were always present, loud and strident at times, quiet and unobtrusive at others, but always there, lurking in the shadows and begging to be noticed.

Throughout college and into my twenties I handled my pain by pretending it didn’t exist, the same approach I used to deal with my respiratory conditions. The worse I felt, the harder I pushed, as if taking on too many commitments somehow proved I wasn’t sick, I didn’t have pain, and I didn’t need help. It’s no coincidence that the years of my life when I was the most seriously ill and in and out of the hospital frequently corresponded with the years I was the most overcommitted.

This cycle seemed destined to continue, because slowing down would mean confronting the true nature of my relationship with chronic pain.

And then two things happened within a few months of each other, two life-altering events that would have remained life-altering on their own but when combined, became a force too powerful for even my significant powers of denial to overcome: I met my future husband and my adrenal system decided to shut down. A lifetime of steroid treatments for my lungs had caught up with me, and when the toxic drugs that had mimicked the body’s hormones for so long were finally tapered off, my body didn’t know how to make adrenaline anymore.

Suddenly I had two competing relationships to juggle, one with the man I loved and one with a body racked with more pain and fatigue than I’d ever known. At some points, even moving my lips to speak was difficult, and the slightest brush of a finger on my leg muscles hurt. I’d lie awake night after night, desperate for sleep to cut through the haze of exhaustion but unable to rest because of the pain.

On the one hand, it was no longer physically possible to ignore my condition. When you can’t raise your arm to brush your hair properly, the truth pretty much slaps you in the face. Yet because I was spending more and more time with my then-boyfriend John, it was impossible to ignore my situation on so many levels. I was too tired to drive. I was too weak to carry my grocery bags. I was in too much pain to follow through on dinner plans.

Like any sane, compassionate person, John wanted to drive me, carry my bags, and pick up take-out when I couldn’t leave my apartment to go on a date. He also wanted me to cut back on my freelance jobs and make decisions about my schedule that would give me a fighting chance at feeling better. But at first, I eschewed his offers of help, I dragged myself to events I had no business going to, and I wouldn’t accept the fact I had to quit some of the jobs I really loved. I also didn’t want to admit how much my pain and fatigue affected John’s life.

I didn’t want our relationship—or any relationship in my life—to become about doing things for me, not with me.

And then I started to see that in refusing to accommodate my pain in any way or let people help me now and then, I was allowing my illnesses to define my personal relationships. I thought I was simply ignoring my pain, but in fact I was giving it center stage in ways both unproductive and damaging. My time with John was increasingly tinged with symptoms and setbacks, and it didn’t have to be that way as much as it was.

Finally, I became more comfortable acknowledging the long-standing bond I had with chronic pain. Instead of regret, I felt overwhelming relief. I stopped being stubborn. I cut back on my schedule so I wasn’t quite as tired and overworked. I rested ahead of time when I knew I had a social engagement or physically draining activity planned.

More than anything, I realized the freedom of choice: it was far better to ask John for help when I knew I really needed it than it was to be forced into accepting help when I had no other alternatives.

I’m not sure how much longer I could have denied the limitations of chronic pain if all these events hadn’t transpired simultaneously, but I am grateful for the timing. I thought I’d sacrifice independence if I abandoned denial but it turned out to be the other way around. When I let go of denial, I had far more control over my health as well as my relationships.

Gregory Hennick/Insulin Pump Update

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I promised an update on the Gregory Hennick situation (the Massachusetts man who wasn’t allowed to be become a police officer because he is a diabetic who uses an insulin pump).

I almost missed this article reading the morning paper today, but here’s the latest: after consulting with physicians, officials have decided to end the former (illogical and unfair) policy and will now review each applicant based on the severity of the disease, not simply whether or not that applicant chooses to use a pump to control his/her diabetes.

Most. Humiliating. Experience. Ever.

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“Oh, hey, good luck with that phlegm.” (Said in the most insincere, mocking way imaginable.)

“Thanks a lot, jerk.” (Said in most indignant, shocked way imaginable).

And with those parting words at baggage claim, thus ended the most humiliating, awful experience I’ve ever had in terms of being a patient. Even several days later, my face flushes in anger and my heart rate quickens a bit.

Let me start at the beginning. My husband and I were returning from a weekend trip, a Thursday night to Sunday affair. We brought The Vest with us, as we always do, and we brought it as a carry-on item, as we always do. It cost nearly twenty thousand dollars, so we’ve never wanted it rolling around underneath the plane, and we’ve never had trouble stowing it above us. This time, our plane was a tiny commuter plane, the kind with only about 20 rows and midget-sized overhead compartments. The gate attendant Thursday night said our backpack might not fit overhead (which it did) but that The Vest would.

It didn’t. So we stowed in beneath our feet and while it did protrude about an inch or so, I still had room for my feet and the flight attendants made no mention of it. We did the same thing Sunday, figuring on the same airline and on the same type of plane, what passed muster Thursday would be okay Sunday.

It wasn’t. I should also add that by the time we were on board and stowing carry-on luggage, the plane had already been delayed by 35 minutes and we were still third in line for take-off. The flight attendant and a customer service rep told us that it wasn’t far enough under the seat and we’d have to check it. My husband asked if it would be insured if we placed it underneath the plane and something happened to it. We were told that it wouldn’t be because it wasn’t checked originally, and that we should have made alternate plans if we wanted it insured. We pointed out that we would have made other plans if we hadn’t thought we could bring it on the plane the same way we just had days earlier, but handed it over anyway.

The whole exchange lasted about three or four minutes. People on the plane were getting antsy—one man even pointed to his watch and said he had places to be—and I don’t blame them, but it was the airline’s inconsistency that caused the problem. I was mortified and really self-conscious the whole flight, even though we were still delayed several minutes while the backlog of planes in front of us departed and all of that had nothing to do with our four-minute exchange. Still, the whole plane knew I had a piece of medical equipment that needed to be moved, and that’s the kind of public notice I don’t like.

I had recovered by the time we were at baggage check. In fact, I was resting on a bench when I saw a man approach my husband and get in his face. Seriously. In his face.

“Hey buddy, we’re cool. It’s cool. I mean, I got my car towed because you wouldn’t check your bag, but really, it’s ok,” he said, shouting.

Because I am a hot head and because I didn’t like this guy yelling at my husband, I got in the middle of them. They were going back and forth, the guy (who was there to pick up his girlfriend) screaming that we should have made other plans and John explaining that the 35-minute delay prior to boarding is what made us late.

“You don’t know anything about our situation. We were allowed to bring it on the other day. It only took a few minutes to check it, and we were still third in line for departure, so it didn’t make a bit of difference in terms of when we took off,” I said.

John chimed in with, “It’s an expensive piece of medical equipment that helps keep my wife alive. It keeps her from drowning in her phlegm.”

“I’m sorry to hear that,” the guy said. For a second, I thought he meant it. “But hey buddy, say my girlfriend has a health problem, I wouldn’t be able to take her to the hospital because my car got towed. If I hadn’t been waiting twenty minutes, I’d have a car, but it’s cool, I mean as long as you feel you don’t need to check your bag.”

“Wait, you parked your car in a tow zone and left it alone for twenty minutes and it’s our fault you got towed?” John asked incredulously. (At that precise moment, the airport security message warning that all unattended vehicles would be ticketed and towed immediately came on. It was too perfect.) “The plane was late before we even boarded it, so don’t put that on us. And don’t park in an illegal area and leave your car alone and then scream at me for it!” John added, motioning in the air towards the intercom.

All three of us went back and forth a bit longer, voices raised and faces red. When the guy finally walked away and spat at me“Good luck with that phlegm” several times, very loudly and meanly, I was shaking. Literally every muscle in my body was quivering, not from anger but because no one had ever made me feel so terrible. The way he yelled it at me in front of so many people basically felt like he was saying, “Die for all I care, my car got towed.”

I sat down on the baggage claim carousel to steady myself.

I regret so many things about that whole incident: I regret the airline’s inconsistency put us in the position of risking a twenty-thousand dollar piece of medical equipment. I regret that both of us lost our cool and raised our voices in response to this guy, something I have never done in public and hope to never repeat again. And I really regret that after everything I’ve seen and done, some jerk still had the power to make me feel like my existence was so inconvenient and worthless.

And I will never, ever fly on a certain airline named after the fourth Greek letter again!

On Fathers and Memories…

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We went for a walk around my neighborhood and got lost.

I was three, and that’s what I remember as my earliest and most vivid memory of my paternal grandfather. Someone found us eventually, of course, and I was too young to really piece together that it was odd that a grown-up who’d visited my house for years would get both of us lost on a simple Sunday afternoon stroll. He was in his late fifties.

I was about five when the phone calls from my grandmother started coming with increased urgency: My grandfather had wandered out the front door again. He stepped onto a bus and wound up in the next city. A neighbor found him disoriented, standing near the corner shop. Sometimes, the searches went into the night, and she’d return in the dark, hugging and kissing him, fighting back tears. If she turned her back for a second—to take a quick shower, to cook dinner, to answer the phone—he could slip away.

He was a proud Marine who spent four years fighting in the Pacific during WWII; when he was lucid, he was just as proud and determined as he’d always been.

Soon after, I heard the word “Alzheimer’s” peppered in my parents’ conversations more and more. I didn’t know what it meant, but I knew each time I saw my grandfather, he talked less and less. Smiled less and less. Interacted less and less. I wasn’t scared of him exactly, but I was confused. I didn’t know how to reach him anymore.

No one did.

When his needs became too great and the amount of care he needed was more than any one human–however loving and devoted–could provide, he went into a nursing home. He was fairly young at the time, not much older than my own father is now, and his life was slowing reversing itself. He sat motionless in bed and our regular visits bore witness to each new loss: he no longer spoke. He no longer had the spark of recognition in his eyes he used to have even when words failed him. He no longer had the ability to control his bowels, or eventually, to feed himself.

My grandmother took the bus to visit him every day. My father took us often; what I remember most are his tears as he stroked the forehead of the man who no longer recognized his oldest son.

My grandfather died when I was a freshman in high school. He was buried on my fifteenth birthday, the same morning the bomb exploded in Oklahoma City. He was buried in Marine tradition; dress blues and taps and a gun salute accompanied his casket.

He died in 1995, but we lost him long before that. My father had grieved each loss for so many years that he said he’d already said goodbye to his father a hundred times over. I cried during the funeral, but I wasn’t crying for the man I would miss—Alzheimer’s had taken away any real relationship I could have had. I cried for all the things he’d missed and would cotinue to miss, the memories robbed: the high school graduations, the college ceremonies, the weddings and baptisms. Education was the most important thing to him—he stood over my father’s shoulder each night, making sure he didn’t take his Boston Latin school education for granted—and with each academic milestone we passed, my father would well up and say, “Your grandfather would have been so proud. He lived for this.”

Last week, Newsweek highlighted the challenges of caring for Alzheimer’s patients and predicted how huge an issue the disease would become in the next several decades. It brought back a flood of memories for me and an appreciation of what my grandmother and her children went through caring for my grandfather I couldn’t have had as a child or even a teenager.

I am so used to the physical aspects of giving and receiving care for chronic conditions—getting ice for someone, doing errands, asking for help carrying things. I have seen the way the body can be ravaged by disease and because I am used to it, I do not fear it too much.

But I cannot think of anything more terrifying than losing your memories, of words and names and faces slipping away day by day, of spiraling into a black hole of confusion so profound that by the time the body’s functions begin to systematically break apart, the mind isn’t even aware. Towards the end, the pain is even greater for the living, I think, for people like my grandmother who can only hold a cold, clenched hand in their own and remember what it was like to feel love from their own beloved.

For Father’s Day, my husband and I scanned three hundred pictures and created a DVD of them for my father. It meant so much to him, but we all benefited. I watched the photos from the early years flash across the screen—my grandfather holding me above a birthday cake, my grandfather in the middle of all of us cousins on Christmas, my grandparents with their arms around each other, smiling. You could see his gaze grow more vacant through the years, but he was there.

“Pictures are such great sources of memories because you never take them when you are angry or sad, they are usually so happy,” my mother said. She was right, but I loved these pictures the most because through them, I saw that he did know me once. He did hug me and hold me and say my name. We did have a relationship, if briefly.

And for however sick my father is, I am unspeakably grateful that at the same age his own father started growing blank and withdrawn, his mind is strong, clear, and sharp. He will continue to make memories—and keep them.

Stranger than Fiction

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Given my journalism background and current state of intense nonfiction book writing, I sometimes forget I applied and entered my MFA program as a fiction writer. I haven’t had much chance to indulge in novels lately—whenever I am not writing my book I am researching material for it—and miss the crafty details, the intricate plot lines, and imaginative twists and turns.

Life, however, never fails to give me fodder.

The truth is often stranger than fiction, and all I can say is that I couldn’t make this stuff up, and if I did, no one would take me seriously.

Last week, my grandmother had a series of strokes. This alone is a decidedly serious, difficult, and emotionally draining situation and worthy of its own post (forthcoming). But things are never that singularly difficult in my family. Thankfully, my (severely arthritic and debilitated) mother and my (walking disaster of medical conditions and recent cardiac surgery patient) father were on Cape Cod with her when it happened and could take her to the hospital.

Clearly this was a stressful time, especially for my grandmother and my parents. They spent hours in the ER, waited for multiple tests, and got the grim, scary news that she has a large brain aneurysm. Thus the whole rehab-nursing home machine began churning.

Enter the ridiculousness. The week before, my father got a sunburn on the top of his foot. By the time he was at the ER with my grandmother, he could barely stand on it. Whether it’s because he’s been an insulin-dependent diabetic for twenty years and doesn’t heal fast or because he’s predisposed to infections as a result of his immunosuppressive meds and chemo or just terrible luck, the sunburn turned into a staph infection and cellulitis.

After IV treatment, my mother brought him to their vacation house to rest and quickly returned to the hospital to be with my grandmother. They had to leave his car at the hospital and my mother, whose shoulders aren’t up to lots of driving, did all of the ferrying back and forth.

And then their land line shorted and they had no dial tone. My father had dropped his cell phone in the ocean the weekend before so he didn’t have one. My mother had forgotten her charger and her cell phone was dead. Because the phone line was faulty, the security system went haywire and kept beeping.

And then my father realized he couldn’t rely on his his crutches because his arm muscles were too weak from his polymyositis. This meant he couldn’t get up to use the restroom or get any food, and my mother couldn’t help him when she was home because her back was too unstable. I should add there wasn’t any food in the house anyway since my parents hadn’t expected to stay through the weekend.

Just to recap: a temporarily immobile diabetic with a potentially life-threatening infection was alone in a house with no viable way to communicate with the outside world and no access to food should he become low.

Did I mention the heavy rains caused the basement to flood?

“Can you come down and get your father lunch?” my mother asked in her harried state, really asking for so much more.

So I packed up my clothes, medicines, The Vest, and the dog and took off for the two-hour drive. For the next couple of days, I shuttled between my grandmother’s room in the stroke wing and the outpatient clinic where my father had to return each day…all of which wouldn’t be all that ridiculous except for the fact that the humid weather made my congestion a lot worse so pushing my father’s wheelchair while juggling my bag, my laptop, and his briefcase was a scene of its own.

The only things that saved us all was the fact that we never lost our electricity during the thunderstorms—my dad could watch TV since he couldn’t do anything else, I could plug in my Vest and hope it worked since I forgot to pack my nebulizer, and when my mother returned home from her long days, she could use her heating pad…and the fact that after a lifetime of illness, we weren’t derailed by it all.

“That’s just the way you guys roll,” my physical therapist said when I summed up my tale.

We both laughed. It sure is.

“Blogger Unmasked, Court Case Upended”

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That is the headline of a front page story in today’s Boston Globe involving the medical blogosphere’s own Flea. Read the whole article here.

Given the recent spate of physician blogs shutting down and controversy over who can say what and where they can say it, this case adds even more complexity to the discussion. The more med blogging continues to emerge as a powerful and persuasive tool, the more we’ll see the lines between medicine, law, and politics blur, and the more the idea of anonymity will be tested.

What can we do?

Keep on writing.

Medicine and Politics: A New Look at Chronic Disease

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Chronic illness. As soon as you see the words, you probably think of diseases like diabetes, arthritis, fibromyalgia, or lupus, some of the thousands of diseases synonymous in our cultural lexicon with the phrase “treatable, not curable.” Insulin regulates blood sugar and anti-inflammatory medications target joint pain the way antibiotics maintain health status in people cystic fibrosis or steroids aim to reduce the inflammation in people with Crohn’s disease. None of these treatments rid diseases themselves but aim to reduce the symptoms and the sometimes life-threatening complications of them.

But you already knew that.

Thankfully, the particular nuances of chronic conditions versus acute ones are more widely recognized than ever before. But should the concept of “chronic disease” broaden even further, and if so, do cancer and eating disorders deserve a place in the fold? It’s a compelling question, and one hotly debated in both medicine and politics right now.

From physician interviews on NPR to articles like this one from Salon.com, the recent cancer diagnoses of like Elizabeth Edwards and Tony Snow have made the term “living with cancer” a trendy and oft-published one. If some cancers are the “new” chronic illness, what’s at stake for the patients involved?

Two decades ago, Susan Sontag argued eloquently against the use of metaphor in regards to cancer (required reading in some of my classes), and her notion that to look at cancer through the lens of the military metaphor is a disservice to the cancer patient rings even more true today. If patients fight a “war” against cancer and if they fight hard enough, they win that epic battle, where does that leave the patients who do everything they are supposed to but succumb to lethal cancers anyway? Such a view is too narrow to encompass living with–not dying from–cancer. As Salon’s Walter Shapiro writes,

“What appears to be happening is that medical advances in cancer treatment are removing much of the stigma from the disease. As Humphrey Taylor, the chairman of the Harris Poll, put it, ‘Medically, cancer has gone from a fatal disease to something that is curable — or something that you could live with for many years and die of something else.’ In presidential-election terms, Taylor said, ‘as long as candidates look vigorous and act vigorous, I don’t think cancer will be a problem.’”

Bringing this from the political sphere to the personal, “living with cancer” reflects a reality I know well—it’s a question of sustained treatment and stability, rather than a cure (and, more importantly, rather than impending death). My father has been on maintenance chemotherapy for fourteen years and will remain so for the rest of his life. It helps control the progression of the rare disease that attacks his muscles and spurs the growth of tumors. In that sense, his chemo is similar to the insulin he takes for his diabetes, the statins he takes for his heart disease, the medications he takes for his gout—it treats it, it helps him live his life, but it won’t ever cure it.

He works, he travels, he golfs, and he never misses a chemo treatment so he can keep doing that. Elizabeth Edwards’s plight reflects that of so many ordinary patients—except due to her notoriety, hers affords the rest of us an opportunity re-examine what we think of as chronic illness.

An equally compelling—and, as far as I can tell, much less talked about—consideration is that put forth by author Trisha Gura in her new book, Lying In Weight: The Hidden Epidemic of Eating Disorders in Adult Women . While the age distinction Gura makes (this isn’t just a problem for teenage girls) is important on its own, what really strikes me is her query into eating disorders as chronic diseases: like so many chronic illnesses, eating disorders reflect a combination of genetic/biologic predispositions and environmental variables and often re-emerge in response to emotional triggers.

Rather than considering them “recovered,” patients and physicians should consider women with a history of eating disorders whose symptoms have subsided as in “remission.” Gura supplies ample research on relapse patterns in adult eating disorder patients to help shape this new view on them. She writes,

“These findings suddenly turn the whole idea of eating disorders recovery on its head. Recovery, meaning that the disease disappears forever, is a fallacy. The reality is that time, the length of time a person is symptom-free, becomes important in characterizing a patient’s state of mind, and, by extension, her health.”

The ultimate question is, of course, is it worthwhile for patients to consider certain cancers and eating disorders chronic diseases? Any sort of chronic illness implies ongoing vigilance and maintenance, speaks to periods of exacerbations as well as periods of increased health, and requires certain behaviors or treatments to reach a state of optimal control and stability.

Sounds pretty reasonable to me.

A Question of Balance

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“So what are your thoughts on alternative medicine?”

I was out to lunch recently when someone at my table who knew my medical history asked me that. I paused, trying to formulate an answer that was both honest and authentic as well as diplomatic enough to appeal to both sides of the issue since I wasn’t sure of his sensibilities—what surprised me was that my honest answer did that on its own.

“Well, here’s the thing. I wouldn’t be alive today without the help of Western [conventional] medicine, there’s no disputing that. But I’ve used acupuncture in the past for pain and fatigue and had great results, and it’s done wonders for my mother in terms of her shoulder and back pain,” I said.

I told him I knew people who swore by therapeutic massage and other alternative practices, especially for chronic pain and inflammation. Both my parents, recipients of the most cutting edge care in areas like cardiology, rheumatology, and oncology—my father is a walking advertisement for minimally invasive interventional cardiology—also book weekly appointments with an acupuncturist and rave about him.

“I guess what I’m saying is that a combination of both is ideal in my mind. I believe there are limits and drawbacks to conventional medicine, and I believe there are strengths and benefits to alternative medicine that patients should explore. It’s about balance, really,” I said.

For the past few weeks, I’ve been thinking a lot about that conversation and about this notion of balance. It’s only been in recent years that I’ve achieved anything close to balance in my life, having preferred for most of my life to try and do things in spite of my illnesses, rather than in consideration of them.

“Balance” is a loaded term when it comes to chronic illness: balancing the good days with the bad, the acute flares with the low-level hum, the doctors’ appointments with social obligations, the frustration with optimism, the desire to move forward with the awareness that you need to pull back, the momentum of inclusion with the stagnation of isolation. These are the “big ticket” themes, the ones that are at once the most popular to discuss and explore and the ones most difficult to sustain.

And yet there are all the little acts of everyday living, the choices and decisions we’re not even always conscious we’re making anymore that also speak to this notion of balance. I take several medications every day, as I have since I was born and as I will for the rest of my life. I appreciate how these chemicals help manage my conditions. But I also try to ingest things that even out the scale a bit: fresh fruits, huge amounts of greens and fresh produce, lean meats, lots of water, nothing processed, all things that are naturally good for my body. (Let’s ignore the caffeine issue for now, okay? I swear I have cut back, and I drink green tea, too!)

There are days when I do not have the lung capacity or the stamina to go to the gym, and on those days, I do yoga. I love the way it lengthens me, the way it opens up my lungs, how warm and taut my otherwise aching muscles feel. Ironically, what started as my default workout when cardio couldn’t happen has been wonderful for my dodgy lungs.

These things represent balance, but they have become so routine that I don’t stop to see them as such.

The work versus downtime ratio has always been my biggest struggle. Combine a perfectionist workaholic with the attitude of “I’m going to do it just to prove I can, that I’m not sick” and you don’t get a pretty result. I’ve made great strides; no longer do I compulsively look for additional jobs or take on too many projects, no longer do I feel that I “should” be doing more than I am or feel guilty about the choices I’ve made (most of the time, anyway.)

The past few weeks, though, there hasn’t been much balance between work and rest, between deadlines and, well, fun. Since the semester ended I have been plugging away on my book, all day, every day, seven days a week. I’ve plunged into Black Hole mode, only to emerge to attend my fellowship, send the occasional e-mail, or grab a late dinner on a Friday night with my husband—after getting kicked out of the coffee shop where we’ve both been working when it closed at 9pm.

For the most part, I love every minute of it, the intensity, the focus, the productivity. I apologize sheepishly to friends and family for my absence, and in those moments, I do feel guilty about my lack of balance. But I know it’s only a temporary thing, that in a few weeks I can turn the computer off for a bit and exhale….and I also know that for so many weeks of my life, I have surrendered everything to sickness and hospitals and chaos. Who knows, maybe this period of absorption is just another way of balancing things out…