New Year’s Anniversaries

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

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

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

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

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

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

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

Facebook Twitter Email

Family Traditions

I just got back from spending Christmas with my in-laws in Michigan. It was a wonderful trip—we visited with relatives we don’t see much, we ate lots of good food, and we spent time just relaxing and catching up with my husband’s parents and family.

It was the first Christmas I didn’t spend with my side of the family, and the differences were compelling. Of course, there were obvious ones: Christmas Eve was much quieter and peaceful than the boisterous, crowded Italian Christmas Eves of my past. There was no spaghetti, meatballs, or traditional fish dishes, but there were plenty of delicious roasts, potatoes, and desserts like apple crisp. Instead of the frenzied gift exchange, we opened our gifts one by one; instead of Midnight Mass, we went to a 5pm Lutheran service—and I loved every second of it, just like I love the traditions I’ve known since childhood.

Over the course of the four days, I couldn’t help noticing lots of other fundamental differences, namely that for the first time in my life, I saw what a healthy Christmas looked like for a healthy family.

My mother-in-law cooked meal after meal, and was able to chop, mix, scrub, and lift. Between her spine problems, reconstructed shoulders, and bone-crushing degenerative joint disease and advanced rheumatoid arthritis, my mother hasn’t been able to do any of these things in such a long time. My father-in-law spent time clearing brush in the backyard, moving large limbs and getting his hands dirty. When he was done, he went on a walk with us and then helped vacuum the living room. Between his muscle disease and his heart problems, the weakness, pain, and fatigue that physical exertion often causes my father means he can’t do things he’d like to do, like putter in his own backyard, move things for my mother, or run to the grocery store without paying for it later.

I wasn’t used to long car rides or shopping trips that didn’t translate into a day’s recuperation, or how getting the house ready for company didn’t mean being in so much pain afterwards that sitting up seems like a monumental effort. I wasn’t used to not having to build in extra time to recover from tasks, or not worrying that a family party would do more harm than benefit to my parents. There was no nausea from chemotherapy, no heating pads or ice packs to procure, no last minute prescriptions to pick up at Walgreens, no stress or frustration or struggle.

In essence, I wasn’t used to daily tasks and holiday preparations being so effortless, to life being so calm and even keel. And in the middle of all the celebration and tradition, I felt a twinge of sadness for the family I left in Boston. They would trade all the Christmas gifts in the world for one day of living like this, and for everything they do have—joy, love, support, friends, etc—this is the one gift they will never have. They don’t resent or lament that, but once I saw what it could be like, once I saw how the healthy lived, I couldn’t help but wish for it for them.

Facebook Twitter Email

Genetic Ignorance?

Genetic Ignorance?

I read Alex Beam’s column in the Boston Globe the other day all about radio talk show host Jan Mickelson’s incredulous rant against diabetics. As quoted in the article, Mickelson told Type 1 diabetic and radio guest James Hirsch (whose son is also diabetic), “I know the desire to reproduce from your own gene pool is almost overwhelming…But what if you know have the shallow end of your own pool? …If you are genetically flawed, just don’t reproduce. That’s just being a bad citizen.”

While Mickelson later admitted he confused Type 1 and Type 2 diabetes, his eugenics-based approach to solving health care problems remained both steadfast and confounding.

Obviously there are so many angles and ways to respond to Hirsch’s vitriolic and illogical argument. It is a topic we discuss often in my writing courses that explore constructions of health in contemporary literature. The more we find out about diseases and their genetic components, the more people like Mickelson can use burgeoning science as an ill-formed argument against reproduction. In response to diabetics being labeled as “genetically flawed”, Hirsch countered with the examples of breast cancer patients and those stricken with Alzheimer’s—after all, no one would apply such labels to these patients despite the genetic basis of those debilitating conditions.

If that’s the case, then what about heart disease? Certainly genetics plays a role in cholesterol levels. Or celiac disease, an autoimmune disorder with a strong genetic component? Or extend that line of thought further—what about poor vision, ADHD and other learning disabilities? All these things have genetic links. Where, then, should we demarcate the line that separates the “shallow” end of Mickelson’s pool from the more appropriate deep end? Who decides which variations and mutations are permissible, and which ones banish us to the bottom of the reproductive chain?

I can take this topic out of the news and out of my classroom because it is one that has a stake in my own life. Many of my health problems—including the potentially life-threatening ones—are genetic ones. Though both sides of my family have complicated medical histories, no one on either side has anything close to primary cilia dyskinesia—and yet here I am. Perhaps I am genetically flawed in the eyes of people like Mickelson, but I don’t see it that way.

Telling people with certain diseases not to reproduce misses the mark on so many levels. Labels and categories can never fully encompass all the things that underlie questions of health and wellness, and viewing the genetic code as textual errors to be re-written is shocking in its exclusion.

We’re thinking about having children, and while I have a lot of concerns, I am not worried about passing on my PCD to my children. They may get their grandfather’s high cholesterol or diabetes, their father’s dyslexia, their mother’s celiac disease, or, also like their mother, they may be born with something no one in the family has seen or had before. If they’re lucky, they’ll also inherit their grandfather’s drive and determination, their mother’s memory and resiliency, their father’s compassion, wisdom, and intellect. Whatever combination of genes—of variations, mutations, quirks, and talents—they have we’ll take, with gratitude.

Luckily for all of our sakes, ignorance isn’t something that is inherited. Unfortunately it exists, but only in those people at the “shallow” end.

Facebook Twitter Email

Mourning Thoughts

I found out last night that the father of a friend of mine died suddenly the other night. Obviously all death is tragic, but there is something especially unsettling about unexpected death—the lack of warning, of preparation, the inability to say all the things we’d say if we had the chance.

Naturally, this terribly sad news made me think of my own father, currently in the midst of a flare-up of his polymyositis and still trying to improve his renal function. He has flirted with death more times than I care to elaborate, and when I consider the many life-threatening conditions he’s battled for so many years, I can’t help but wonder just how much more his body can take.

For people whose lives are dominated by chronic illness, sudden death is so disconcerting because it flies in the face of all the things we do each day for our health. I’ve watched my father test his blood sugar, inject himself with insulin, endure the nausea and ill effects of chemotherapy, and work against the pain and fatigue of muscle disease for years. I’ve picked up his blood pressure, gout, and cholesterol medications from the drug store, and I’ve visited him in the cardiac unit after his catheterizations, angioplasties, and stent insertions. All the things he does to stay alive could wind up becoming his entire life, if he let them.

And all the things he does for his health reassure me that he, that we, have some control over what happens, that if we plan and dose and medicate and recuperate, we can keep death at bay and our bodies can keep bouncing back. Sudden illness and death is so scary for that exact reason, because it defies planning or preparation or proactive approaches. But perhaps the day to day grind of chronic illness, the whispers and tuggings that our conditions bring into our lives, can also combat that most sober of reminders.

No matter how short or trivial the conversation may be, I never hang up with my father (or my mother, husband, or brothers) without saying “I love you”. I do this not because I am thinking catastrophically that it could be the last time we speak, but because I have learned not to take anything for granted—illness as well as health.

Facebook Twitter Email

Homeostatic Haywire: How Steroids Still Sideline Me

Temperatures are a little off right now. It certainly looks like Christmastime in Boston—the trees downtown are lit, wreaths adorn street lamps, and the Frog Pond is iced over for skaters. Yet I have only had to wear my winter coat and gloves on one occasion, I haven’t seen my breath in the cold once, and just this weekend I spotted people wearing flip-flops. Despite all the griping I do when I have to shovel my car out of the snow, the unseasonably warm weather is, quite frankly, disconcerting.

Equally disconcerting? My internal temperature gauge, which is mired in its own homeostatic haywire. What was once a once or twice a week phenomenon now occurs almost nightly: despite layers of clothes and the fact that our condo’s pre-set heating system is blasting even though it’s warm outside, I get cold and clammy. Actually, it’s more like I am dripping in sweat. My face turns deathly pale, the palpitations begin, and I can barely string sentences together I am so exhausted. Sometimes I feel it coming on, other times it can happen within a matter of minutes. Either way, when it hits me, I am totally drained for hours, sometimes days.

When my temporary adrenal problems improved after two years, I’d been hoping these weird daily drains would dissipate as well, but no such luck. Certainly, plenty of things could contribute to this upsurge in symptoms—multiple current infections, chronic fatigue, the end-of-the semester crunch and general holiday craziness. But when I discussed all this with my doctor last week, it turned out my favorite ghost still haunted me: steroids.

Now, I’ve railed about steroids, deplored them, and alternately owed my life to them in previous posts, so I’ll save that for another time. Since I’ve cut way, way down on my steroid use in the past two years (oh, the wonders of having correct diagnoses at last!), I guess I was hoping the havoc they wreaked on my body would magically disappear. But I’d blissfully forgotten a key lesson I learned years ago—the effects of steroids linger in the body for long after we’ve stopped taking them. It may be a few months since I’ve had oral or injected steroids, but that doesn’t mean my body isn’t feeling them.

“Think of it as your body fighting to regain control over the functions steroids have controlled for so long. When your body wins, you feel okay. When it loses control, things get out whack,” my doctor told me.

I was on steroids continuously for more than twenty years and am off and on them these days, so how much longer will they sideline me? I can’t be sure—no one really can be—but one thing really reassures me: unlike most of things wrong with me, this might actually go away some day. Assuming, of course, that I can avoid having to take steroids in the first place. I’ve been through this cycle many times, but at least I am getting closer to achieving that goal than ever before.

Till then, while Boston flirts with a decidedly un-white Christmas, I’ll keep piling on the layers and hope for the best.

Facebook Twitter Email

Who Moved My Fallopian Tube?

It was supposed to be the no-brainer procedure of the batch of standard infertility evaluation tests, the one diagnostic test that was more formality than functional. Hysterosalpingograms test whether fallopian tubes are open or blocked, and for women trying to get pregnant and not succeeding, the immediate results of this test can make a huge difference.

In my case, no one suspected I had any problems with my tubes, but my medical team decided it was worth it to know for sure and rule it out since a lot of the time, women have blocked tubes and don’t even know it. I had enough problems we already knew about that the last thing we needed was a separate condition going undetected.

I am careful not to turn this site into an infertility blog—my goal is to explore issues surrounding living with chronic illnesses in general, rather than focus on a specific condition or topic. The thing is, though, these two topics seem to overlap more and more these days.

Tubes aside, my reproductive challenges are two-fold: there is the question of can I get pregnant and the inevitable question of should I get pregnant. The “can” part is somewhat dubious—if I don’t have cilia in my reproductive system (and there is no way to test this) then things can’t move along my fallopian tubes to get where they need to be. Other than simply trying and never getting pregnant, a high-risk specialist told me one of the only other indications of whether or not I had cilia would be an ectopic pregnancy.

Equally complicated is the “should” question—some of the numerous concerns there include increased infections and hospitalizations and further decreases in oxygenation, all of which mean a significantly increased risk of seriously pre-term delivery (and that’s just the beginning).

In the middle of these two questions are assisted reproductive techniques like IVF, and here again the can versus should debate is ever-present: were I to elect this path, I could only have single-embryo implantation because the high risks I already face mean multiple births are simply not an option, and the same high-risk factors need to be weighed.

So as we’re processing all of this information and trying to make what seem like impossible decisions, this one test was supposed to be the easy part.

“So you don’t have a left tube, correct?” the doctor asked me during the test.

“Um, as far as I know I do. I’ve never heard that I don’t,” I said.

“Well, the right one looks good but the left one isn’t here,” she said. A pause.

“Don’t get too worried, most of the time this just means the muscle is spasming and the dye can’t get through,” she continued. “At this point, I don’t think more invasive tests are necessary, but we’ll revisit that issue if we need to.”

I nodded, slightly stunned. It wasn’t so much that I didn’t believe her—and intellectually, I knew she was the expert and had seen enough of these to know—as it was that I just hadn’t planned on hearing anything other than “Just like we expected, everything’s fine.”

But after all these years, why is it that I am still surprised when my body doesn’t act the way I expect it to? It never has.

And the more I thought about that, the less inclined to worry about my currently Missing in Action fallopian tube. Things looked grim and wrought with complications, but I’d faced grim and complicated situations many times and somehow, my body always managed to do what none of us expected it to: survive.

The one thing I can say with utmost confidence about my body is that it is unpredictable and anything can happen–which is exactly why I’m not giving up on it just yet.

Facebook Twitter Email

As Good as It Gets? Thank You Very Much

The Wedneday night before Thanksgiving, I collapsed on the couch just in time to watch “Top Chef” with my husband. I had the day off and spent most of it preparing appetizers for the next day’s feast—in between bouts of coughing, wheezing, and assorted aches and pains. For weeks now I’ve been battling what I refer to as a “high-functioning plague,” a respiratory infection that has lodged itself in my lungs and won’t let go. While it makes breathing difficult and congestion constant, I am usually still able to go about my daily activities and am not confined to bed. I feel sick, but it is a functional sick, so it is okay.

During the commercial breaks, my husband and I chatted a bit about our upcoming few weeks. I mentioned needing to schedule a test I’d had to cancel earlier this fall, and the conversation eventually drifted towards an inevitable topic with us these days: maintaining stability. It’s been 10 months since I’ve had a seriously acute respiratory event and needed to be hospitalized, the longest stretch I’ve had in over a decade. I am so conditioned to expect critical illness that sometimes I can’t even believe it. I’ve had to juggle several other conditions, but they are more life-altering than life-threatening.

Three years ago, I spent the entire week of Thanksgiving in the hospital. I spent Christmas Eve of that year being transported by ambulance from my parents’ hometown hospital to my Boston hospital, one Christmas out of the past five I have spent in the hospital in recent years. Holidays haven’t always been especially festive for me.

But here it was, the night before Thanksgiving. My appetizers were finally ready, my condo was scrubbed clean, one of my favorite shows was on, and I wasn’t anywhere near the hospital. The holidays were indeed making a comeback.

As the night progressed, my symptoms worsened. I turned pale, got clammy and sweaty, and the exhaustion in my arms and legs was overwhelming. This was a nightly occurrence, as was the coughing jag that followed. We barely noticed it, only pausing to turn the volume on the television up more so we could still hear it above all my racket.

“It’s not great, but it’s a lot better than the past few years. I’m not healthy, but I am stable,” I said to John.

“It might just be as good as it gets. And you know what? I’ll take it.”

“Me too,” he said. “It’s more than good enough for me.

And when we sat down to dinner the next day with our family—including my father, who only a few months ago underwent heart surgery, my mother, whose joints would pay for her meal preparations for days to come but whose smile didn’t show that, and my niece, a healthy and happy two-year-old—we knew that while stable never means perfect, we’ll gratefully and thankfully take it for all of us.

Facebook Twitter Email

Invincibility and Illness

One evening last week, I noticed a girl doing something I would never do on that particular stretch of urban street: walking alone in the dark. Granted, it wasn’t extremely late and there were lots of cars and buses on the street. But it was a poorly lit section of road in a pretty tough area—one where a gang of children (children!), ages 10-14, had nearly stabbed a man to death around 9pm just a few weeks ago—and with lots of dark alleys and shadowy hills, it wasn’t exactly a welcoming area once the sun went down.

I could tell she was a college student: she looked about 18, she was wearing a sweatshirt with the insignia of a university just a few blocks away, she had a backpack slung over one shoulder, and like many of the students I see on my campus, she had iPod headphones in her ears and Ugg boots on her feet.

Beyond these telling details, there was something else that told me she was in college: her air of invincibility. She strolled down that dodgy, dangerous street confidently. I admired her for this, but I also worried about her on account of this.

I think it’s an almost universal experience, that sense of invincibility and fearlessness so common during the college years. We’re insistent that we can work hard and play hard; we take challenging courses as we balance campus parties and social events. We stagger home from bars late at night, usually without worrying about if this is safe. We pull all-nighters to cram for finals without considering what this does to our bodies. We eat unbalanced meals at ungodly hours, we think coffee is an equal substitute for rest, and we think because we are young, we can get away with it.

In college, I may just have been foolish enough to walk alone in a city at night. In fact, I know I did this on more than one occasion, buoyed by the false notion that because I was in a “good” area that guaranteed nothing bad could happen. But for me, this air of invincibility was even more pronounced when it came to my health. In addition to the typical age-related tendency towards taking risks, I had to contend with my innate response to the interruptions of chronic illness—the harder it pushed me, the harder I pushed back.

I over-extended myself largely to prove that I could do whatever I wanted despite being sick. I took on too many extra-curricular activities, I spent far too many nights at the newspaper till 6 am, I hated to turn down plans with friends. Each time I went into the hospital, I came out of it with an even more relentless attitude towards taking on too much. Did I ever really think taking such risks with my health would work out favorably for me? Did I ever really believe that none of this would catch up with me in the end?

Of course I didn’t. But that didn’t stop me in those days.

My belief in my own invincibility is much more muted these days. Now I am the one reminding my young students not to roam the city streets alone. Between my vigilant attention to local news and surging violence and my evolving realization that none of us are untouchable when it comes to taking risks, I’d sooner spend my last few dollars on a cab then put myself in a potentially dangerous situation that is both completely predictable and avoidable. I am not ruled by fear, but I think about safety much more than I did when I was in college.

In terms of my health, the gradual progression of my conditions has forced me to abandon the notion that the choices I make don’t have consequences. I spend far more time and energy trying to prevent symptoms from worsening and trying to maintain a balance between what I want and what my body needs than I do in trying to “strike back” at illness or prove that it can’t stop me.

Part of this transformation is simply the maturation process all young adults go through, and part of it can be attributed to the fact that at some point, we get too sick to be able to pretend we’re otherwise any longer. For me, this all happened at the same time.

I watched the young girl disappear into the shadows as my bus pulled away from her somewhat wistfully. Sometimes I miss that invincibility, that ability to take such risks without worrying about the consequences—but such nostalgia is fleeting. I may not take the same kind of risks, but I don’t pay the same consequences either.

Facebook Twitter Email

Rainy Day Reflections

I’ve been too busy lately to do a lot of things. Writing deadlines to meet, student essays to comment on, fellowship submissions due and a nasty respiratory infection all converging during the same week left me feeling run down and out of touch with the people and the things I care about.

The tighter my chest got, the more achy my leg muscles became, and more I realized how long it had been since I had seen my friends, the more I knew I needed to make some changes:

Step 1: I started a course of very strong antibiotics and resigned myself to using my nebulizer a lot more often than normal.

Step 2: I saw my friends not once but twice on Saturday—and luckily, I had a husband who was willing to chauffeur me around since I was too exhausted to get there on my own. Catching up with some of the girls was wonderful—we keep in touch via e-mails and voice mails, but seeing them in person and having time to really talk was just what we all needed, I think.

Step 3: I read the whole Sunday paper today, something I haven’t had the luxury of doing in months. It reminded me that I was allowed to take some time to relax, that there is a state of being between overdrive and bedridden.

And then something happened that made me even more refreshed and energized. I was at Sunday Mass when they announced they were offering the Anointing of the Sick following the service. I’d been anointed before when I was critically ill, but it occurred to me that I was asking a lot of my body right now and would be asking even more of it in the near future and I could stand to be anointed.

As the priest said the prayers of healing and hope, I couldn’t help noticing the other people who formed the circle around him. There were about 20 of us in total, and together we spanned several decades, several ethnicities, and inevitably, many different kinds of illnesses. Yet I couldn’t tell from looking at any of them what was wrong—and that was exactly what I needed.

Our circle reminded in a very real and immediate way that I am not alone, that every day there are people all around me who must also find ways to balance all the forces in their lives in addition to illnesses. Their challenges might not be visible to the outside eye, but they are still there. After weeks of feeling isolated by my infection and exhaustion and my workload, it was a relief to feel a sense of community.

As I listened to the priest’s words, it hit me that there are many definitions of the word “healing.” I wasn’t looking for my conditions to be healed, nor, I realized, did I need them to be. Healing can also mean returning to a place of hope and faith—in our own bodies, in the ones we love, in the unseen community that supports us when we don’t even realize it, and in whatever form of spirituality or reflection we subscribe to.

Turned out to be the most productive Sunday I’ve had in a long time.

Facebook Twitter Email

Blonde Ambition

I saw her again this past Friday night, the same woman I’d seen at the gym a few Fridays ago and whose image haunted (taunted?) me for the duration of my workout.

She was standing in front a day locker, clad in an expensive-looking and perfectly-tailored suit. She was tall, taught, and tanned. She wore sleek high-heeled shoes and clutched an improbably small designer bag. Her straight blond hair was glossy and perfect despite the windy, rainy weather, and the brash fluorescent lights bounced off her lacquered nails and sparkly jewelry. She chatted with an equally put-together and equally tall, taut woman about a spinning class. When you looked at her, you just knew she was someone who never missed a workout or skipped a spinning class.

She certainly looked like she a body that worked the way she wanted it to–and she didn’t look anything like me.

When I was in high school and college, it was the pony-tailed, lean-legged and perennially tan lacrosse girl who elicited such comparisons and insecurities in me, but now that I am an adult and in the professional world, I found her counterweight.
.
I am short, I am stocky, and when it rains, my curly blond hair is hard to control. I’d arrived to the gym in my version of “professional” attire—a corduroy skirt, sweater set, and boots with a low heel I’d worn since I had to walk around campus all day and cannot function in heels. It wasn’t sleek or stunning, it was pragmatic and perfunctory. I’d changed into my gym clothes, and yes, I still wear t-shirts from my alma mater (Georgetown), including the cheap ones we used to get in exchange for helping students move into their dorms or the ones they’d give away at campus functions.

I wasn’t there for the spinning class (my muscles felt too weak for that) or to keep up marathon training (the only time I’m involved in marathons is when I am cheering on friends who run them). My goals were much less lofty—to keep the junk in my lungs moving around so it wouldn’t become infected, to boost my energy after a draining week, to lose the vestiges of steroid weight that continually tormented me.

I headed for the treadmill and chose one that didn’t face the room where the spinning class was held.

For obvious reasons, I’d never been much of an athlete (my stint on the JV basketball team was short-lived; my brittle bones broke when I caught the ball at an awkward angle). But I’d always loved going to the gym and feeling like I was doing something for my body that could make a difference. I was proud when I got there and irritated and impatient when I couldn’t. At least that’s how it usually was, except when the same glossy idealized figure I’d been comparing myself to for years re-emerged and made me doubt myself and my presence in that gym.

But later that same night, as I walked to Starbucks to work on my book, I realized it didn’t really matter why both us were at the gym on a rainy Friday night. She might look the part of the well-sculpted, athletic woman much more than I ever will, but I was still there, plugging away on my treadmill and working on strength training. I was doing what I needed to do for my body and my goals, and though they were quite different from hers, they were no less valid or worthy.

Facebook Twitter Email