Category Archives: Relationships

The Tale of How I Got a Clue

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I’m twenty-seven years old. I’m a married woman. I work at a university and write for several publications. I’ve got my life together and the frequent infections and crises that are part of living with illness do not faze me much at this point. And yet when I was sick last week and stuck in my house, my parents insisted on stopping in just to say hello. You know, just to make sure I was still breathing and all. Even though I spend weeks like this every year and I’m always okay in the end.

But I think I’m finally getting it, this whole protective parent thing.

Let me tell you a little story I’m calling “A Tale of Two Dogs.” Fear not, this is not ubiquitous pet-blogging, I am actually going somewhere with this, I promise.

Let’s call Dog #1 Shadow (as in, scared of her own). Shadow didn’t have the easiest start in life. She was bounced from kill shelter to kill shelter as a puppy and was conditioned to think being scared of everything was okay. Even after she found a home, Shadow went through a lot of crises and stress in her young life, and though her owners did everything they could for her, sometimes things happened that were out of their control and they couldn’t make things easier for her. So many things scared her: sounds, things that moved, strangers, voices, even her own darn tail when it hit the French doors by accident. Shadow is a loving, loyal girl. She loves parks and walks, running and chewing bones—that is, when her problems don’t overshadow everything else, when they allow her to do the things she loves.

And then there’s Dog #2, whom we’ll call Bull (as in, in a china shop), despite its gender inaccuracies. Bull is a happy-go-lucky kind of girl. She is fearless and playful, she leaps into life before she’d ever consider looking, and is the rough and tumble sort who enters a room and instantly makes herself at home. She flings herself into pools, she chases balls into walls and bounces off them without skipping a beat, and she wags her tail with such fervor that she knocks herself over in excitement on an hourly basis. It is a nice thing to see, this playful exuberance, this innocence with which she approaches life.

As a friend of mine would say, to boil things down into an executive summary, consider the following example: Bull and Shadow are frolicking in the yard. The sprinkler heads spring to life. Bull bounds toward them with glee, trying to catch the water in her mouth and batting at the spray with her paws. Terrified by the sound and the motion, Shadow lurches herself across the yard and scuttles under the porch, tail between her legs and ears pinned back. On this day, she cannot enjoy the simple acts of living that Bull can.

Bull is the new girl in town. I know that I will love Bull and Shadow equally, that I will appreciate their quirks and talents and funny little ways equally. No question about that. But I will always more about Shadow, will always be that much more protective and alert when it comes to her because we have been through so much and I know that life will always be a little bit harder for her. Bull is a grand girl and will be fine; with love and an endless supply of tennis balls, she’ll find her way in this world. She won’t need me the same way Shadow does. She is lucky in that way.

Maybe it’s a stretch, maybe I spent too much time in rescue shelters this week and the lack of air conditioning and the stench of panting dog and stale urine went to my brain or something, but I can’t help feeling that this must be a tiny little slice of what it’s like to be parents. Parents who have healthy children and sick children, who love them each without limit and love them for the individuals they are—and who will not ever be able to shake that instinctual urge to protect the one they’ve been through the trenches with, the one whose problems (physical or, like Shadow’s, emotional) sometimes make everyday life that much harder. It is not a greater love than they have for anyone else, and it is not a smothering love. But it is a love that speaks of a very different bond, one that cannot be replicated or truncated.

I’m twenty-seven, a married woman with a career and two dogs. And yet my parents flood me with “How are you feeling?” phone calls the minute a fever spikes. You tell me, am I onto something here? If so, maybe I can tone down the exapseration with which I reply, “It’s just an infection. It’s not a big deal.”

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.

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!

Playing with Food

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While it’s great to point out chains and restaurants that have gluten-free menus (oh the ecstasy of choice!), every now and again I like to pay some attention to those restaurants that are especially accommodating despite not being GF. This weekend, we went to a place that had the perfect balance of romance, “safe” food, and interactivity: The Wine Cellar in Boston.

The wine aficionado in me was overawed by the extensive wine list; even my husband couldn’t resist stating “A guy could get in some serious wine trouble here” several times as the night (and the drink tab) progressed.

But as seductive as the wine list was, it was the fondue that provided the real entertainment of the night. I’m the first to admit that when I think of fondue, images of my parents in their 1970s garb of polyester plaid and gargantuan shaded glasses huddled around a pot of bright yellow cheddar cheese come to mind. Okay, so maybe the only used their fondue set once or twice in their early years, but they are the point of reference I had for fondue at all.

Who knew food on sticks could serve as the perfect date night for a celiac girl and her foodie husband? The appetizer course was cheese (naturally), in our case a queso made of cheddar, cilantro, white wine, roasted red peppers, and onions. In addition to the bread, they served potatoes and, by request, steamed veggies. They made our queso with cornstarch, assuring us the only difference was that this GF version might break apart sooner. Our solution? We basically inhaled the entire pot before it even had time to separate.

“We just ate a bathtub of cheese,” I groaned, holding my stomach. “We’re disgusting.”

“Yeah we did,” countered my husband, clearly proud of our prowess, who lives by the motto that there is no such thing as enough cheese.

To our pleasant surprise, the entrees and their assorted dipping sauces were naturally gluten-free. Well technically, my first surprise was that fondue entrees involved anything other than cheese, but once I figured out that we got to select four meats and that everything they came with I could actually eat, our date night got even sweeter.

I’ve talked recently about how much my attitude towards preparing and consuming food has changed—I like everything fresh and healthy, I don’t take shortcuts or eat anything processed or artificial, I am deliberate about what I eat, when I eat it, and how it will make me feel. Part of this is a direct result of getting diagnosed with celiac disease, but part of it is because I married a man who taught me to savor taking things slow, to enjoy cooking as an activity and not merely as the means to supply and end to hunger.

For people who have been working seven days a week for a few months now and needed night to decompress, fondue was the perfect choice. There is nothing more deliberate or conscious than selecting which piece of meat to skewer and place in the steaming pot or broth and deciding how long to let it simmer. Eating a meal piece by slowly-cooked piece like that is an experience that magnifies this approach towards food, and it was fun. Yes, fun. We experimented with all different meat/sauce combinations, we realized that chocolate covered grapes were as delicious as chocolate covered strawberries, and we also realized that when you’re really paying attention to what you eat and who you’re eating with, three hours can elapse and you’d never know it.

The wine didn’t hurt, either.

Timing (Sweet) Timing

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Can I just say that my timing has always been….ironic? No less than three hours after I posted my last entry on worrying about my father’s health and the general nuttiness that consumes my mind, my phone rang.

“Your father’s [thallium stress] test went badly. The artery they stented in August is 100% blocked again and he’s being admitted,” my mother said.

Cue pit falling in stomach and tears welling in eyes. Not again.

Thus began several days of waiting, waiting to see if he would need a triple bypass surgery or if they could re-stent his major artery and leave the other four blockages alone for now. Either way, he’d need the dreaded dye for the catheterization, and his one little kidney still hadn’t recovered from August’s trauma.

Are you freakin’ kidding me? First of all, the man had done everything right: his cholesterol was the lowest it had ever been, he exercised regularly, faithfully took all his meds and statins, even dropped down to a four-day work week since the August scare. All that, and we were told that 95% of the time, stents lasted a lifetime. Of course the man with one kidney and a billion other medical problems was in the 5% of patients whose stents failed within months.

Secondly, what are the chances that the very day I write a post that talks about his health and my tendency to be a little overbearing and obsessive about it he gets this news?

In high school, after eight months of rehab from ankle surgery I made the JV basketball team (and yes, there were in fact cuts!). The day before my first game, I caught the ball awkwardly and because my bones are like twigs, I broke my hand. End of season. In grad school, shortly after I finally recovered from the one-two punch of whooping cough and viral pneumonia, my adrenal system failed. All this happened just as I was settling into the weekend job I adored at the Devon Nicole House at Children’s Hospital—and these are just the first instances to pop into my head.

My father’s timing is even more ridiculous. I could write pages about it, so I’ll just focus on recent events. In August, he got chest pains just after the ferry departed from Hyannis to Martha’s Vineyard, making for a long, harrowing ride. Last week, he felt short of breath and tired again, just as he was about to get on a plane and fly to DC and then Florida for conferences he’d looked forward to all year, events he was leading and presentations he’d labored over. Instead of going to the airport, he went to his doctor.

But there is a first time for everything, and my father’s catheterization Tuesday went better than best case scenario. I can’t even believe I just wrote that in conjunction with him. Better. Than. Best. Case. Scenario. They didn’t need to do the triple bypass, and they used so little dye during the cath itself they could re-stent it then and there, something no one thought they’d be able to do.

Feels too good to be true, but as each day goes by, we’re believing it more and more and we’re inspired by it.

During the long days in the hospital this week, I thought a lot about what I’d write here. I kept coming back to my last post and how my worries and actual events collided like that. It was tempting to bemoan our collective timing yet again, but something stopped me. My father was alive, and a lot of steps went into that process.

He was a ticking time bomb for months, walking around with a major artery 100% blocked and not realizing his stent failed. He was about to fly all over the country. What if he’d had another heart attack and this time it was on the plane? Or in a hospital far away where no one understood his beyond complex medical history? What if he hadn’t called his doctor exactly when he did and hadn’t been able to squeeze in the stress test?

His timing was pitch-perfect.

The more I think about all the near-misses, the plans gone awry and the events missed at the last second, I realize just how much timing impacts my life, our lives. Illness is never convenient and disappointments are frequent, but we’ve made it this far. I wouldn’t change our timing by one second.

Who Me, Worry?

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“If I stopped and worried about everything that’s wrong with me, all the possible complications and outcomes, I’d never make it through the day. So I don’t. For better or worse, I just push through it,” my father said recently.

For the record, the man is a walking catastrophe: he’s diabetic, he’s lost a kidney to cancer, he’s had a heart attack and stents implanted. Oh, and he has a really rare connective tissue disease (polymyositis). So it really would take him all day to dwell on what ails him if he were so inclined.

“I know you know what I mean, Laurie,” he said.

Of course I knew what he meant, because I follow the same rules. This is not to say I don’t think about my health in the same way he has to on a daily basis, but thinking and worrying are two very different things.

He thinks about what he eats and thinks about his insulin. He thinks about how much exercise he needs to fit in and thinks about when to take his medication, but these types of thoughts are more rote procedure than anything particularly emotional or intellectual. I think about what time my chest PT is when I’m making plans, I think about taking certain meds on an empty stomach and others after I’ve eaten, and I think about what I’m buying at the grocery store in case I can’t find a parking spot and have to carry the bags too far. Nowhere in these deliberations does worry play a role.

Now, I’ve already admitted that I am somewhat of a control freak, something that bears mention in this conversation. I fully admit to being obsessive about certain parts of my life: making the bed, de-cluttering the coffee table, listening to certain music when I am writing, doing exercises at the gym in a particular order, etc. (Are you scared yet?)

I don’t obsess or worry about my health like that, though. Sure, I have moments where I’m genuinely scared or I wonder what it will be like 10, 20, or 30 years from now. Who doesn’t? But day to day, I don’t worry. I just do what I need to do and live my life, accommodating illness when I have to and defying it whenever possible.

But here’s the kicker: I worry about my father’s health. A lot. More than we each worry about our own combined. I inquire about his liver function often since the chemotherapy he takes is hard on the liver. I always ask for his latest cholesterol readings. I feel like there are so many moving parts involved in keeping him healthy (ish) and alive and I fear someone will drop one of them. I stress over his kidney function results, and spiral into a chain of what-if’s: Diabetes stresses the kidneys. He’s had it for over twenty years and he only has one kidney to begin with. The dye he needs for his heart catheterizations, angioplasties, and stents also stresses the kidneys, and he’s needed two rounds of the dye lately. What if he needs a transplant? Would he even be eligible, given his other serious conditions? Would his body be able to stand it if we found him a kidney?

“You can have one of my kidneys. If I’m a match, it’s yours. In a heartbeat,” I’ve told several times. Usually these offers of organs have no sequitor, and I get a lot of strange looks.

He always tells me not to worry so much, assures me that he is okay. But every now and then, he admits to the reality of his situation, and that actually reassures me. There is such a fine line between pushing along and getting through each day and plain old denial, and while I completely relate to his desire to just move forward and not focus on what’s wrong, I also think it’s important to acknowledge the long-term consequences…not enough to be dominated by them, but just enough to take them into consideration in the present, like when he’s trying to balance his blood sugars or trying to squeeze in exercise.

In the end, I think this goes back to my need for control. I take my meds, I follow my regimen, and though in the end I can’t always control what my body does, I feel better knowing at least I have all the moving parts accounted for. With my father, control of his health is one more step removed from me, and because I care about him so much, I want to be the one to keep it all together.

I’ve promised him I won’t worry quite so much, but I’m not sure he really believes this will happen. After all, as my father, he faces the same challenge in terms of worrying about me no matter how much I assure him I am fine…so I guess we both need to follow each other’s advice.

Ups…and Downs

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I was struggling with a way to tie all the things I wanted to say into a neat little essay-type piece, so I decided to chuck the structure constraints and just go through them.

1. It’s officially springtime. Not that you’d know it from the snow on the ground and the fact that I’m wearing gloves today, but it’s a start. It occurred to me as I walked my dog this morning that I made it through a winter without being in the hospital. It has been at least a decade since I’ve said that. True, I’ve suffered from various plague-like infections since October, I haven’t been able to hear out my left ear for a couple of months now, and my peak flows have been horrid, but no matter. No steroids, no hospitalizations. Now, if my immune system and my antibiotics can hold out for a few more weeks, I think I’m in the clear.

2. When I am not jealous of Dr. Jerome Groopman (a famous doctor! A staff writer for the New Yorker! A widely-published book author! The man has that whole left and right brain strength thing going on that I can only imagine) I am wholly appreciative of and fascinated with what he writes. His newest book, How Doctors Think, tackles a subject near and dear to my heart, misdiagnosis. He argues that misdiagnosis results from mistakes in thinking, “cognitive pitfalls” that occur when doctors assume certain things based on a patient’s history or complaints and “anchor” themselves to one idea/diagnosis instead of considering broader possibilities. (See a great article taken from the book here ). Having been involved in this exact scenario for years, I really appreciate the clarity and insight Groopman brings to this discussion, and am looking forward to reading the whole book. (Plus, it makes me feel a little less crazy after all those years of answers that didn’t match my problems and a little more understanding of the physicians behind those diagnoses.)

3. There are days when I seriously question what I do and how long I can do it. There are also those wonderful, uplifting, soul-buttressing days, though, when I have no need to question. I have some amazing students. Thoughtful, inquisitive, and intellectual students whose projects and interests truly excite me, whose questions about science and public health and society make me want to read more and whose research reassures me just a bit about the future of our country’s health care system.*

4. Three people in my personal life are pregnant right now; two just made the announcement recently. Wonderful, exciting news, the kind of news you need when it’s cold and miserable out and you just want spring to start, when you just need to reminded that everything is a cycle and there is always the chance to start anew, when you can feel yourself getting happier just by virtue of their happiness reaching out to you. **

5. I had an amazing conversation with an incredibly wise and insightful CF patient the other night, one that left me with so many questions and so many things to think about. It was the kind of talk that left me humming with energy, my mind going in so many different directions. ***

*Sometimes I still question the choices I’ve made. Just when I think I’ve set up a schedule that is conducive to my health and my writing, I am plagued with doubt. Am I being lazy? Wouldn’t things like medical bills be so much easier to stomach if I took on more classes? In theory I am making an investment in the future by proceeding this way now, but that lag between theory and practice can be difficult sometimes.

**Apparently this spate of fertility has prompted well-meaning people to approach my mother and ask when we’re going to have kids. Not surprising, since people have been asking us that since we were engaged, but since that’s a complicated question with an even more complicated answer, this unsettles me. Right now there isn’t much to say about it, and I find myself not wanting to discuss what is there to discuss. I suppose I just wish the good news—the pregnancies—could remain all about the pregnancies and the people involved in them. I mean, I know it’s human nature and an inevitable (and innocent) question, but I’d rather just focus on the three babies, not what anyone else may or may not be doing in the near future.

***At one point, I was asked “Do you know anyone like you?” I answered that no, I didn’t personally know anyone with PCD but that in the past couple years, I’d found groups online. I read from time to time, but rarely post. This segued into a really interesting discussion about the nature of community at different points in illness—for example, how if you’ve been sick all your life you might not need the same community you did as a child but if you’re sick for the first time as an adult, you might really need to seek out people with the same condition. I said that no doubt it would be valuable to know someone with PCD face to face, but that I know enough people with significant illnesses that I can extrapolate what I need to. Since I’ve never known anyone like me (except my parents, to an extent), this hasn’t bothered me.

I got home that night still thinking about community. In my inbox was an e-mail saying someone from the PCD Web group had died at 42. It was not anyone whose posts I had ever read, but I felt really down. It hit me that with community comes the burden of reality.

Food is Love

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I met John exactly two weeks after I was diagnosed with celiac disease. At the time, I was just as apprehensive about the whole situation as he was, though we manifested it in different ways. Our first date—while wonderful—included several renditions of the following:

“Are you sure you don’t mind if I have some bread? I don’t have to…I can even ask the waitress to take it away if it’s bothering you.”

“No, it’s fine. I don’t mind. Just because I can’t eat it doesn’t mean you shouldn’t.”

And back and forth we went, both trying to make the other one comfortable and not exactly sure how to do that.

He told me later that of all my health problems, celiac disease was the only one that scared him initially—he loved eating out so much and wondered if we’d have enough in common. Naturally, the irony of that statement is that it turned out to be food that brought us together, and food that helped him bring me back to myself.

That night I ordered a salad. I didn’t want to be the “that girl,” the one who only eats salad, especially on a first date, but I was too nervous to try anything else on the menu. Grilled chicken over greens? Now that was a dish I knew was gluten-free.

We both have a lot more confidence now.

Going gluten-free was certainly life-altering, but I had so much other stuff on at that point in my life—I was in and out of the hospital several weeks a month with respiratory infections, and had also just gotten officially diagnosed with PCD and bronchiectasis, which were pretty serious and life-changing events on their own. I was adjusting to new medications, dealing with a lot of lung-related complications, and had only recently started having chest PT twice a day, a huge transition all on its own.

With so many substantial changes and serious illness all at once, eating salad for lunch and dinner and yogurt for breakfast was an easy way to stick to the GF diet without investing too much time and energy that I didn’t have. Plus, as a single girl living in an apartment the size of a large suitcase, less groceries and cookery meant more space to live.

And then we had our second date, and our third, and suddenly I was going to Italian and Malaysian and Mediterranean restaurants, and ordering a garden salad wasn’t cutting it anymore. John loves trying new things, and I wanted to enjoy dining as much as he did—and, obviously, I wanted him to enjoy dining with me. I started asking questions about meals and learning the best way to approach servers with my allergy concerns.

And something else happened—we began cooking meals together. John would print out GF recipes he’d found online and we’d go to the huge grocery store near his apartment. Left to my own devices, my shopping cart still consisted of lots of lettuce and some organic soup, but we branched out together: gluten-free flours for apple pies, cornmeal for polenta pizza, spices for homemade Indian food and fresh vegetables for stir-fry. I began to look forward to cooking the way I had when I was younger; John’s creativity was contagious.

Before I knew it, I was eating hot food again on a regular basis. I was also finally starting to feel better—my energy was improved from the GF diet, and my lung infections were less severe and my time in the hospital decreased as a result of my new treatments. Soon, I noticed another change, something I hadn’t seen during all those long months of being in the hospital and being preoccupied with all the adjustments I had to make: I was happy.

We’ve been married a year and a half now, and we’ve done even more adjusting. John no longer eats exclusively gluten-free meals in our home—he no longer worries he should, and I no longer worry that he’s worrying. Some nights, he has ravioli and I make brown rice pasta; other nights we have naturally gluten-free risotto or roasted chicken or tuna steaks.

For this Valentine’s Day, John made our plans a few weeks ago. He selected a restaurant we’d always wanted to try that had a special pre-set menu for the occasion. He shot me an e-mail:

“There are a bunch of options for you that are safe, I checked. The menu is attached. What do you think, do you want to go out to dinner?”

This Valentine’s Day I think just might try the grilled ostrich skewers…you’ve got to live a little, right?

Type A by nature or by illness?

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So here’s the truth about me: I’m a bit…obsessive. I wake up in the middle of the night with a jolt, knowing suddenly that I have a typo on a certain page of a document. I can’t go to bed without making a To Do list for the next day, nor can I feel relieved or productive unless I am able to cross every item off that list.

It gets worse. I still remember the questions I got wrong on standardized tests from several years ago and can write them out, and it is with equal queasiness that I can play back every word of a fight or disagreement or awkward situation verbatim, wishing I’d have said this or cringing that I’ve said that.

Not surprisingly, such tendencies also mean I like to be in control. I never liked group projects because I figured I could do a better job on my own, and when I served in editorial positions of power, I had to constantly remind myself that delegating the work out to the staff was a positive thing, not a necessary evil. My dog got lost last year when someone was watching her, and since then I have become a total helicopter mom. At dog parks, I can’t relax and instead, stand guard at the gates lest anyone leave them open for even a second. When my parents watch her, I plaster their back door with signs reminding everyone not to leave the door open.

Too much hubris? Probably. Too much energy wasted on wishing things were perfect and making sure everything unfolds just so? Definitely. Qualities I’m proud of in myself? Not really. But at the same time, they are qualities that are partly responsible for the things I have achieved, and I can’t help but feel that our biggest weaknesses are also often our strengths—it just depends on the degree to which we allow them to dominate.

I’ve always chalked a lot of this perfectionist/control stuff up to the fact that I have always been so sick: I can’t control so much about my life, so what I can control, I try to do in full force. I take the large issues, the life-threatening ones, in stride, so it’s sometimes the smaller stuff that frustrates me. It makes sense, and it’s certainly a convenient rationalization on days where I wish I could just escape myself a little bit.

But lately I’m wondering about how much of my personality is defined by illness—or, more accurately, a reaction to the presence of illness—and how much is just my personality. Would I be this way I was healthy? Since I’ve never been healthy, I just don’t know. I know that in various ways I am a lot like my parents, but then again for as long as I have memories, they have been sick, so that doesn’t help me tease it out much. I could have inherited these traits from them, or I just inherited a lot of medical problems and the three of us happen to respond the same way to illness.

I guess since I have no “before” and “after” when it comes to illness I will never know where illness leaves off and plain old Laurie begins when it comes to these qualities, but in the end that doesn’t really matter. What’s more important is maintaining that balance between strength and weakness that keeps me going without making me go a little crazy.