Category Archives: Chronic Illness

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.

An Outsider Finds Her Way Back In

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I was indulging in perhaps too much introspection the other day as I told my husband that sometimes I feel like very few people in my life are at the same stage in their lives as I am. He countered with the view that every person is a unique place at a particular time, so really everyone probably feels like this.

I know in a lot of ways he is right, but at certain moments, I feel like an outsider. For example, while a lot of my friends have recently gotten engaged, only a couple of them are married. That isn’t a huge deal, but our social lives are certainly somewhat different as a result. The married people I do know all seem to be having babies left and right, and for the most part, they have (thankfully) had very healthy and uncomplicated pregnancies. Everyone knows about infertility, but few people I know have any personal perspective on it.

While a lot of my friends are in corporate environments where they have lots of co-workers or are in graduate programs with a heavy emphasis on social events and bonding, I am a writer and often work alone from my home office. I love the interaction with my college writing students and thrive in being in the classroom, but though I like many things about the adjunct life, it makes it very difficult to get to know other colleagues. Sometimes our office hours overlap and we catch up or grab a cup of coffee, and those conversations are always refreshing and energizing for me.

Don’t get me wrong, I have no doubts about the choices I’ve made and I love what I do, but some days it feels like my social circle gets smaller while everyone else’s gets wider.

None of these points are monumental on their own—it’s only when I combine them with having chronic illnesses that they can sometimes seem isolating. I don’t know many 26-year-olds like me. I have conditions few people have heard of, have had more random and ridiculous medical mishaps (enlarged organs, rare infections, unexpected complications, etc) than I can even remember accurately, and I have simply never known what it feels like to be healthy. My parents are obviously both sick, so in that sense I have people in my daily life who understand what it is like. But on days when it is a struggle to get out the door and make it through the day and I pretend to my students and colleagues that I am well, I feel alone…and the days where I am forced to stay in the house because of an infection or a flare, I feel that more acutely.

Certainly I feel the physical isolation of illness during those times, but more profound is the emotional isolation of it. I’m in my own little world when I want to be part of the one that keeps on churning outside my window.

Then I happened upon a wonderful post discussing similar thoughts, and it made me realize that it’s okay to recognize these feelings now and again. I don’t want to dwell on them too much, but they are real to me and real to other people as well, and while there isn’t one magical panacea that can “fix” them, just putting them into words is a start.

And I began to appreciate the power of shared experiences and the accessibility the Internet offers the millions of people like me out there—I may not know too many people like me in person, but while everyone’s medical constellations are different, there are certainly people who experience the same types of frustrations and occasional isolation as I do. It’s not often that I write about writing (or blogging, as it were), but this meta-conversation lifted me out of my indulgent cloud and made me realize there are many people like me–and if I click onto the right site, I may just find some commiseration.

Family Traditions

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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.

Genetic Ignorance?

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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.

Mourning Thoughts

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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.

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A Relationship in Numbers

As some of you who have read previous posts may know, I have been thinking a lot about numbers and statistics lately—what they mean, how they define us, and, more importantly, how they fail to capture what cannot be so easily quantified.

In digging through research for my book proposal, I unwittingly came across the following statistic: The divorce rate in marriages where chronic illness is present is over 75 percent.
(see http://www.mychronicillness.com/invisibleillness/statistics.htm.

Now, I am not here to debate the accuracy of these statistics or discuss the methodology behind them, but they did make me stop and think. I was told recently I had a 75 percent chance of not having children on my own, so I approached this statistic with the same question: How do you know if you’ll be in that lucky 25 percent?

Seventy-five percent of marriages where chronic illness is present do not last. That is an overwhelming number to me, and it might be misleading. People divorce for all sorts of reasons, and it doesn’t necessarily mean there is a cause and effect relationship between chronic illness and divorce. It could be one of many mitigating factors, but looking at the statistic, it’s not possible to weed that out. But certainly between lost income due to sickness, high medical bills, loss of identity, pain, frustration, etc, there are a lot of ways to look at how chronic illness could be implicated in these findings.

Just as with my fertility issue, I don’t think there’s any way to know how to be part of that 25 percent except to try. The odds obviously don’t speak in our favor, but that’s why yet again I am glad that I don’t put too much stock in statistics.

One would think that the stress and tension in marriages would increase with the number of illnesses a person has or the number of people in the marriage who have illnesses—so perhaps a marriage where both spouses have multiple illnesses would really be on the losing side of the odds, right?

But maybe not. Maybe we can look at this from the complete opposite direction. Consider the case of my parents. They married in their early twenties, both believing they were fairly healthy. At 26, my father was misdiagnosed as having muscular dystrophy, a misdiagnosis that lasted seven years and whose toxic steroid treatment left him a diabetic. When he was 32, he had a cancer-ridden kidney removed, the tumor spurred on by the rare neuromuscular disease he’d actually had the entire time (polymyositis). When he was 39, he had a heart attack and an angioplasty. When he was 43, his polymyositis relapsed and he’s been on chemotherapy ever since to try and control it (14 years). Last month, he had a cardiac stent implanted because he had several blockages.

He’s a regular Lazarus in the flesh, no? So how did my mother stand it all these years? Let’s add in the fact the she’s been sick for over two decades herself. She has severe arthritis and degenerative joint disease. She’s had several major reconstructive joint surgeries, has gotten to the point where she’s needed a wheelchair, and is in constant searing nerve pain from her fused spine and crushed discs.

And yet with all the serious illness, the near-death experiences, the years of pain and setbacks and stress and frustration, they have one of the best marriages I have witnessed. They are loyal, supportive and loving towards each other, and understand and anticipate each other’s needs perfectly. I think this is because they have both suffered a lot and therefore can empathize with each other so well. There is no room for anger or resentment because they are too focused on each other’s best interest.

Maybe the more illnesses you have the more you learn to adapt and cope. Maybe when someone you love suffers, you understand your own suffering better and can put it in perspective. Maybe when you’ve been asked to face difficult truths and grim statistics so many times and have always beaten them, you begin to really believe that no matter how bad things are, there is seriously nothing the two of you can’t handle. Maybe you learn that yes, you will suffer losses and frustrations that most people will never begin to imagine, but you also learn that hope will never abandon you altogether, either.

But maybe if we’re playing the numbers game, my parents are just plain lucky they landed in that elusive 25 percent?

Not a chance. They are there because they earned it.

So I have two choices—I can look at the numbers and feel overwhelmed, or I can look at my parents and know what is possible even under extraordinary circumstances.

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Why I’m Not a Numbers Girl

“You have a 75 percent chance of not being able to have children on your own,” the fertility specialist told me matter-of-factly, barely looking up from the computer screen where she was clicking through research studies on the topic.

Instantly, I disliked her. Usually, I appreciate a no-frills approach to medical information. I know enough about terminology and facts to converse with the most technical of physicians by now, and prefer cutting through translations. But this terrain was unfamiliar to me. Suddenly I wasn’t confident, unflappable me; I was reduced to a number, and it wasn’t even a number either of us could quantify one way or another.

I barely heard the “on your own” portion of her assessment, so taken aback by the odds. I’d known women with my condition (primary ciliary dyskinesia, or PCD) have trouble with fertility, but I hadn’t realized exactly what “trouble” translated to mathematically.

The specialist launched into an overview of my options should I fall into that 75 percent—surrogacy, IVF, and medications, as well as their prices—but I wasn’t ready to hear my options yet, never mind process them. I wasn’t willing to abandon the chance I could be in that fortunate 25 percent.

The shock of that particular doctor’s appointment reinforced how much I hate numbers. I always have. I slogged grudgingly through geometry and calculus in high school, doing well enough but spending more time on math class than I did on my other eight classes combined. In between journalism internships, working on the school paper, and writing papers for English class in college, I took computer science and marine biology courses just to escape math class. When I entered a graduate program for writing, I figured the verbal part of my brain that had carried me for so long would finally be allowed complete domination.

But if I wanted them to, numbers could define my daily life in all sorts of ways:

1,000 is the number of documented cases of PCD in the United States (though up to 25,000 people are thought to have it but have not been diagnosed). 20+ is the number of surgeries I’ve had, though we stopped counting so I cannot be sure. My medications now number 8 a day, a two-year low, but with winter coming I expect those to increase. I have 7 different medical conditions, a number that fluctuates when temporary problems flare.

I get chest PT 1 time a day, 7 days a week, 52 weeks a year, but my insurance will only cover 3 visits from my physical therapist per week so I need to improvise. 5 is the number of health insurance plans I have switched to in the past 12 months, and 3 is the number of said companies that have denied coverage of the very preventative care that allows me to stay out of the hospital. 4 is the average number of days per week where I have notable difficulty breathing. 26 is the number of years I have been sick.

There are certainly a lot of statistics, but little that jumps out and describes my life, my motivations, or, in the case of my 75 percent odds, my possibilities.

When I look at such a sampling of numbers, I am reminded why I am not and never will be a numbers girl. I cannot add all those parts up and get a whole me.

And on rough days when all the English degrees in the world cannot help me find the words I need, it’s important to remember that I cannot start speaking the language of numbers–they will always fail to capture what is both intangible and essential: hope.

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Why I’m No Prada-clad Devil—And Never Will Be

In an attempt to beat the sweltering heat and clear my mind of the (productive and meaningful) clutter that accumulated at the fellowship program I am in, I went to see the Devil Wears Prada last night. For a movie based on witty chick lit (as witty as chick lit can be), the film did not disappoint. I laughed at the appropriately snide comments and hapless “why me” moments.

But mostly I stared at Anne Hathaway. Tall, lean, runway-ready Anne Hathaway (well, after her character Andy finally gets a makeover). She was a goddess.

I watched her race down the street in skinny boots, clatter up and down stairs in stilettos, and traipse around New York and Paris in the highest of Jimmy Choos. Ouch. All I could think of was how sore and achy my joints get from one afternoon of very (very) low heels. Between joint problems (bad ankles and inward hips) and adrenal failure (which makes most of my major muscles weak and sluggish and incredibly painful even to the touch), fashionable shoes are not for me, however much I love them.

I marveled at the hours our dork-cum-party girl Andy kept. She complained about the late hours and early mornings, the events that lasted far longer than she planned and the trips that sprung up at the last moment, but frankly I was jealous. Even if I got offered the job “a million girls would die for” (like Andy did), I’d never be able to accept it. One day, and I’d be done. Whether I am tired from not getting enough oxygen or tired because my adrenal depletion is particularly bad, I am always tired and always pushing my body to get through the day.

The movie came at an especially interesting time for me since this week is the first time I have been in a 9-5 routine in three years. Ok, to be fair, my fellowship runs from 9-3 everyday, so it’s not even the full daily grind. But for someone used to a more erratic schedule—teaching and attending courses later in the day and writing all day beforehand—it is an adjustment.

The last time I was a 9-5’er was the year after college when I worked at a publishing company, and that was in the WA Era—the With Adrenaline Era. It’s only Day 3 of my fellowship program, and already I am seriously dragging. As in John needed to help me get dressed and drop me off just so I could attend and I am in intense pain dragging. I have a feeling tomorrow may be one of those days where I can’t move my legs enough to get out of bed.

Clearly, I am not made for the 9-5 world anymore. Even when my adrenal condition improves, with all of my lung and immune problems, I doubt I ever will be.

Overall, my more flexible schedule is dictated by what I do: teaching at the college level doesn’t require me to be present on campus 9-5, though certainly a lot of the prep work and grading takes place when I am not in the classroom. And the beauty of freelancing is that as long as I have my laptop, I can do my work anywhere. It’s not as if this was all b y accident, though. On some level, I knew I’d never quite have the stamina to run the rat race and stay out of the hospital.

A lot of people envy telecommuting, and for the most part, I love it. I am at my computer by 8:30 every day like everyone else, and I stop only for a lunch break. I don’t have to deal with the hassle of an early commute and when I am having a bad day, I can pace things accordingly.

But the downside is that there is no “off” switch for me, no way to leave work at work because my office is in my home. Compulsive by nature, I feel really guilty if I am at home and not working, whether that’s a Saturday afternoon or a Thursday night. It’s not glamorous, but it works for me.

So I will never be someone who totters around in Minolo Blahniks until 3 am. But I’ll probably always be the girl who clatters away on her keyboard in her pajamas.

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It’s All Relative: Gaining Perspective in Maintenance Mode

After twenty-odd years of respiratory emergencies, bizarre infections, and multiple body systems going haywire at the same time, I am used to crisis mode. I studied for finals and wrote newspaper articles from the ICU in college, backpacked through Europe with a broken ankle and torn ligaments, and taught undergraduate writing classes so fresh from the hospital that I still had an IV in one arm and a hospital bracelet on the other.

My attitude matched my actions. During ambulance transport, I cracked jokes through an oxygen mask. I referred to spells where I was too run down to even leave the house as my “Boo Radley” days, and when innocent phlebotomists entered my hospital room to draw blood, I serenely offered them my ankles since they’d be hard-pressed to find a vein anywhere else.

And then something happened.

I got better diagnoses, more targeted treatment plans, and doctors who managed to unravel the thorny mess known as my medical history. I entered a hitherto foreign place known as maintenance mode. I wasn’t healthy in maintenance mode, but I was stable. Instead of the cycle of crisis-recovery, crisis-recovery that had shaped most of my life, I had series of so-so days punctuated by the occasional really good or really bad day. The difference was that the really bad days were not nearly and difficult as they had been, and the really good days were markedly better.

Sounds great, right? And it was. But it was also hard. I simply didn’t know how to exist without a constant barrage of setbacks and calamities, and I’d never had the downtime to evaluate how my baseline health status had changed over the years. While it was wonderful to not be in and out of the hospital as often, it was almost as tough to see for the first time what “everyday” health meant for me. Most days, I did have a hard time breathing, and that was never going to change.My energy level was still pretty low, but I began to see that the more carefully I planned my activities, the more successful they were. I stopped looking at life in terms of “getting back to normal” and realized that this new reality was my normal. There was no drama to eclipse the hard facts anymore.

It took awhile for me to relax enough to start making weekend plans with my friends again and be confident I’d feel well enough to attend. Slowly, I went through “re-entry” into the world of the healthy, and found my position within that world. While the wheezing and congestion had worsened over the years, they now fit in around teaching, writing, and getting to the gym. My daily chest PT visits were no longer my only contact with the outside world but were routine activities I scheduled into my busy days.

Maintenance mode, then, was largely about accepting realities that were so easy to ignore in the flurry of ER visits, CT scans, and IV lines. It was also the first time I’d really seen how skewed my understanding of “crisis” was. If I wasn’t turning blue from lack of oxygen or having some sort of cardiac episode, then that meant there was nothing really wrong, which I now see is a dangerous lack of a middle ground.

Luckily, I have an exceptionally healthy husband who helps in the ongoing process of defining things for me. Things like bronchitis, pneumonia, or kidney problems don’t faze me, but they certainly faze him. Somewhere in between my laissez-faire attitude towards anything short of near-death and his usual interaction with sickness—a seasonal cold or allergies—is the common ground I need to survive as well in maintenance mode as I do in crisis mode. The choices I make for my health no longer completely usurp the choices I want to make for my spirit and because of that, I no longer resent them.