Category Archives: Chronic Illness

Keeping it Simple

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“Basically, your dog is scared of life,” the vet said.

Great, we thought to ourselves. How exactly do we go about resolving that?

Now I am not one to engage in pet blogging, mainly because I recognize few people will ever find my dog as charming, adorable, or entertaining as I do. But I made an exception in this case, as the vet’s words and her words of instruction lingered in my head all week.

Admittedly, my dog (who is, incidentally, as charming, adorable, and entertaining as they come) does have some issues. She was abandoned twice before we adopted her from a rescue as a puppy, and she has an exorbitant amount of fears: anything with wheels (bikes, strollers, skateboards, scooters, wheelchairs, roller blades, luggage, etc), anything that makes a sudden noise, anything that causes sudden motion, anyone she doesn’t know, etc. The daily hum of anxiety that accompanies her intensifies into sheer panic when we’re not around her, since apparently we’re her ultimate security blanket.

“The best thing you can do for her is to let her experience life. Expose her to as many things as possible and help her learn to see she doesn’t have to be scared of every new thing,” our vet told us. Of course she gave us even more specific instructions, but her overall assessment was powerful in its simplicity.

Just live, just do, and you’ll get to the point where you’re so busy doing and living that there’s no room for fear.

I don’t have an anxiety problem, nor am I besieged with fear by things with wheels, things that move, things that make sound, strangers, or anything I’ve never seen before. By no means am I scared of life. But I do doubt my body sometimes, doubt that it will be up to the task at hand, doubt that it will come through for me when I depend on it.

I had my sweet, scared little girl in mind this week when I did something I haven’t done in years: I rode a bike. Not a stationary bike in a city gym like I’ve ridden for years, but a regular old dusty dirt bike. And I didn’t ride through the suburban developments and sidewalks of my youth, but on an honest-to-goodness trail, a pretty famous trail, even if I only did part of it.

Once I got my license as a teenager, I left my mountain bike in my parents’ garage to collect rust and cobwebs. In the ten years that have elapsed, my body has been through a lot. I was already well accustomed to my lungs preventing me from doing things, (I’d dealt with that since birth), but something in me changed after my adrenal system crashed. I got so used to my body failing me and so used to the small losses that amounted to a significant whole that I forgot how to trust my body again.

It’s been three years since my body came to a standstill (literally) and physically the symptoms of adrenal depletion are so much better, but my mental conditioning hadn’t caught up completely. I put in long hours, I work seven days a week, I go to the gym, but until this week I hadn’t pushed myself out of my comfort zone because it didn’t even occur to me I’d be able to.

The day we set out to ride, the humidity was temporarily gone, my infection was under control, and for once, my lungs were cooperating. Now, would the rest of my body?

It was never the bike that I feared, it was the possibility that I’d get several miles out on the trail and something would happen and I’d get stuck there, or that I’d start the day feeling pretty good and end it in a state of setback.

Instead, I got on the bike and just rode. And rode. And I was too busy moving that I didn’t think about what my body might not be able to do.

Simple advice, really.

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.

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.

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…

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.