Wednesday, August 30, 2006

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.

Monday, August 21, 2006

Body Confidence: How Mutinous Bodies Influence Our Instincts

To be fair, I had warned the nurse trying to insert an IV into my arm that I was a “bad stick.” While that is the understatement of the year, I hoped it would let her know that the problem wasn’t her, it was me. Or, as I liked to say, my wily, conniving veins. I needed an ACTH stimulation test to check my adrenal glands. It should have been a simple procedure—draw blood, insert medicine via IV infusion, re-test blood one hour later.

Looks like I may have jinxed all of us that day.

One hour and 45 minutes, 14 sticks, eight blown veins, several hematomas, multiple heating packs, a couple of additional phlebotomists, and much teeth-gritting later, the nurse wouldn’t even come back into the room and I still didn’t have an IV line started. At first, I tried to crack jokes and smile a lot so the nurse—I’ll call her Tammy—wouldn’t think she was hurting me. I have a pretty high pain tolerance (I get my cavities filled without Novocain), but even I will admit that it did hurt.

“No really, it’s okay, you can keep going,” I told her when the needle went into yet another vein and no blood came back out. She’d push and prod until the vein blew or else swelled up to the size of a golfball. After a few tries, she called in the phlebotomist, and an interesting turf battle transpired in terms of tactical approaches. After awhile, Tammy got even more rattled watching over her colleague’s shoulder, and she left the room altogether.

“I don’t understand. I do these all the time, but now I’ve lost my confidence. I don’t want to go near you, and I don’t want to hurt you,” she said as she left. She was practically in tears.

I never got my IV. They had to push the medication in all at once with a syringe and then re-stick me for the second blood draw an hour later. I left with 15 band-aids, several very sore and swollen patches on my arms, and a few instant heat packs to tape around my arms later in the day.

I looked like a disaster, but I honestly think Tammy came out of the experience more troubled by it. “I just don’t have any more confidence in my ability to put in an IV,” she said as she gave me my parting instructions. I was struck by how the balance of power had been disrupted by some tiny, stubborn, and scarred veins. I tried to comfort her with assurances that everyone struggles with my veins, but it didn’t help.

Being the patient trying to console and bolster my healthcare provider was an odd role reversal, but one I’d experienced before. Whenever my body doesn’t act the way it needs to, I feel responsible to remedy the discomfort it causes, like it’s somehow my fault that people lost confidence in their skills when left alone in an exam room with my complicated medical history and my uncooperative body.

But I could relate much more to Tammy than I’d have guessed. I am used to temporarily losing confidence in my own body and in my own skills as a result of my various conditions. It’s the worst when I am returning back to a more “normal” schedule after a prolonged absence or exacerbation. I begin to doubt what I can do, question my stamina level, and hesitate in making plans or commitments because I am not sure I can trust my body the way I once did. Eventually I get there, but while it happens, it is a terrible feeling to question my own instincts, the same instincts that have proved so wise in the past.

I see now why that IV scenario was so precarious for both us. Tammy and I each have our expertise—hers as a nurse, mine as a patient—and yet my body managed to make our knowledge backfire for both us that day. Goes to show that no matter how much you think you know, illness is always an equalizer.

Thursday, August 03, 2006

When Illness and Empathy Clash

By all accounts, it was an innocent remark. I was on the phone with a good friend of mine who was recovering from a particularly nasty cold. Her voice still sounded a bit nasal, and she excused herself once to cough. “Not that I should be complaining about a little cold to you. I feel sort of stupid since this is nothing compared to what you deal with,” she said when she returned to the phone. She sounded sheepish.

I reassured her that that of course she should tell me about it, and I meant it. She sounded absolutely miserable, and a cold is annoying and incapacitating no matter how healthy you are otherwise. We moved on to other things, but her comment lingered in my mind. I don’t ever want to become a martyr for my illnesses, nor do I want them to influence the balance of give and take that exists in any good relationship.

Implicitly, my friend’s comment showed that she understood the realities of my life—serious lung infections, hospitalizations, exhaustion, etc—as best as she could from her perspective as a healthy person. So why did we both feel so awkward in that particular moment? The healthy and the sick have competing rights to compassion and empathy, an idea that makes total sense in theory but can be difficult to put into practice.

Don’t get me wrong, my friend’s exaggerated sensitivity towards my illness was far easier to deal with than the reverse reaction. Like most, I’ve had my share of negative responses to illness. There are volumes of stories out there of people who doubt our illnesses or dismiss them altogether. This is not a point I will belabor, but it is a common phenomenon.

What concerns me isn’t so much when other people don’t respond to me with empathy or compassion but when I am not able to extend those courtesies myself. It’s the dirty little secret of chronic illness, I think. Most of the time, like when my friends are sick or someone I know has an aggravating experience at a doctor’s office, I know what to say and do and how to be what they need from me at that time.

But there are other times when I do not feel as gracious, when I am exhausted from an infection or overwhelmed with getting my life back on track after a long hospitalization and I do not have the resources to respond to others with empathy. It’s almost as if illness removed me from the everyday world of everyday complaints and created a distance between healthy people and myself that I couldn’t just automatically bridge. I was stuck in one place—fear, frustration, etc—and I couldn’t relate to other people. Or wouldn’t relate, to be more accurate.

Deep down, I just wanted to say “Suck it up!” to the woman in the chair next to me at the doctor’s office who complained of pollen allergies, to the acquaintance at work who went on and on about how stressful her life was, or to the person who treated a mild case of strep throat as the end of the world.

For a fleeting second, it is so tempting to respond with something like, “Well, I just got out of the ICU recently because my lung collapsed” or “This is the first day I’ve been able to walk or brush my own hair for a week because my adrenal glands do not work.” I longed for the shock value I imagined those comments would elicit.

But to say such things would make me my own worst nightmare, a martyr for my illnesses. That kind of response would erect a wall between anyone who couldn’t compete with my illnesses and myself. It would also mean I was acting with the very same lack of empathy I find so frustrating in other people.

So in those moments I smiled and nodded in the appropriate places and murmured expressions of concern, but that doesn’t change the fact that my intentions were not genuine. Even though I said the right things, it didn’t mean I always felt them.

Eventually I regain my place in the pace of everyday life and I am not so temporarily boxed in by illnesses that I cannot let anyone else’s needs enter into my thoughts. I regret these instances of resentment because I am not proud of my reactions, but ultimately I take from them the idea no one has a market on suffering. Though our perspectives are often quite different, the healthy and the sick are still entitled to the same empathy and to the understanding of others that we want most in our darkest moments.
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