–What day is it?
Her eyes squinted off into a distant place, as though she were trying to recall a calendar page and picture it in front of her. She brushed her hair back from her face in a haphazard, distracted manner reflective of her intense concentration.
–It’s Sunday, sweetie.
She was quiet for a moment, eyes locked in that far away place. Then she broke the silence with a groan.
–Oh, I hate Mondays.
It was hard to suppress a laugh. Sometimes I suspect that I irritate her when I laugh at thoughts she feels quite sincerely. She doesn’t understand the irony … never heard the song by the Boomtown Rats, and probably doesn’t understand why when I hear her say such a thing, I have to release my own anxiety by having a little chuckle. She probably _does_ hate Mondays – despises them, I would imagine – but not because Monday marks the return of school, or the end of the weekend. She hates Mondays because for 10 weeks straight, Mondays are the days when she gets poked and tested and laced with chemo. If I were her, I’d hate Mondays, too.
It’s a nasty thing, this disease she negotiates. It’s the things we don’t see that must be most bothersome. It makes her tired. It confuses her. It saps her memory and dulls her comprehension. We compare her to Dory, the forgetful fish in Finding Nemo. She likes the comparison and enjoys clowning about with her absent-mindedness, but inside it must be very frustrating and embarrassing.
Then, there are the headaches.
She devours Tylenol like candy. We assumed she just liked the taste. It’s not the Tylenol of my childhood, which came in a sticky syrup that tasted of black licorice. Children’s Tylenol today is a “meltaway" with a tasty cherry flavor. We assumed Jordan found excuses to take it because she loves sweets. Her motives are often suspicious. She tends to want Tylenol after being denied candy. But her doctors assured us that it was not harmful to her, particularly when considering the marrow-weakening agents pumped into her veins each week.
We recently realized that she might actually need the Tylenol. She often complains of headaches, but the symptoms are minimal compared to what we’ve seen her endure. On a flight back from New York a couple of weeks ago, I came down with a dehydration headache. It throbbed inside my head and made me cranky. All I wanted to do was shut my eyes and be quiet. I’m sure it paled in comparison to what she encounters every day of her life. Her doctors speak of “the mass of disease” in her head. It’s only natural to imagine that such a mass packs a wallop of a headache.
Jeanette and I had a sobering revelation. It was late at night. We had turned in for the evening, catching up on the day’s events before shutting our eyes to sleep. Jordan had a very emotional day. She’d thrown a temper tantrum, screamed at her mother and sulked through the house in a state of obstinate defiance. Her mood swings were erratic and exasperating. She later apologized to Jeanette and blamed her actions on a headache. Jeanette was thoroughly exhausted and uncertain how to handle future outbursts. We lay silently in the dark for a minute or so. I had run out of the unsolicited advice I generally administer. That’s when the notion hit me and I blurted it out without even thinking.
–Well, if I had a migraine headache, I’d probably be a horrible pain in the ass, too.
We laughed a bit, but uneasily. Jeanette gets migraines every once in awhile. When she does, she’s very nearly incapacitated. She gets nauseous. She tells me it affects her whole body. What if that’s how Jordan feels when the headaches come on?
Nine year olds are temperamental creatures. As they inch their way from childhood to adolescence, it is natural for them to test parental boundaries and explore the perimeter of individual will. That’s what being nine is all about. And it is that which makes our understanding of Jordan’s predicament all the more difficult. When should we assume she is sincerely suffering, and when she would we suspect a bit of ninery? Sometimes, I have no doubt that her claims of bad headaches are merely a crutch to get out of cleaning her room or explain away bad behavior. But I have no more doubt that there are just as many times when what she says is exactly how she feels, and exactly an explanation of the circumstances.
Last month, Jeanette and Jordan traveled to Portland to visit my sisters. In the security line at the airport, Jordan complained of a headache. Jeanette tried to cheer and distract her while they snaked their way through the metal detectors. Just before they exited the screening area Jordan suddenly laid down on the ground. She attempted to close her eyes. She complained of the headache again. Jeanette managed to get Jordan back on her feet and over to the gate. It was so sudden, so unnerving. Jeanette looked down to see her daughter lying still in the bustle of feet. That incident reminded us of the gravity of Jordan’s illness. It’s easy, and far more pleasant, to consider the surface view – to enjoy the whimsical, temperamental, strong-willed girl who is “kicking cancer’s butt.“ It’s easy to think of her illness as an annoyance. But that viewpoint underestimates the power of her strength. We must remember that beneath the surface apparition is the body of a child waged in a war against a disease that would debilitate an adult.