Fear Factor

May 22, 2006 at 4:16 pm (Uncategorized)

At 4:15 this morning, my two year old son Andrew walked into our bedroom and announced, “I’m scared of the swans on my pillow.” Actually, what he said was, “I thcared of thwans on my pillow,” but Jay and I have special toddler-ese decoders implanted in our ears so we were able to understand him, even in our sleep-deprived state. Jay tried to take Andrew back to his bed, but it was futile. “I thcared,” he kept wailing. Here’s the kicker – there are no swans on Andrew’s pillowcase. In fact, there’s nothing animate represented there at all, just green stripes on a white background. Also, I’m not sure if Andrew has ever seen a swan or read a book that includes one – thcary or otherwise – among its characters.

But this seems to be part of a trend. Andrew has begun to express fears with some regularity, and I find most of them bewildering. When he goes into the bathroom, we have to open the curtain so that “no wolves can come in.” At least wolves are more menacing than swans, but how does opening something keep them out? We also have to skip certain pages of certain books that scare him, though, again, I’m perplexed by my son’s logic. For instance, we need to avoid reading about an innkeeper who makes a bear cub wash dishes, yet Andrew delights in Mr. Bird crying over what appears to be Mrs. Bird’s cat-chewed remains in P. D. Eastman’s classic, The Best Nest.

I shouldn’t be surprised, I suppose, because fears are certainly idiosyncratic. Apparently some large percentage of voters in this country finds something reassuring about Dick Cheney, yet whenever I inadvertently catch a glimpse of his curling lip on CNN, my skin crawls and I can’t help but hear in my head the nasal computer voice from WarGames (that cheesy Matthew Broderick movie from the eighties) intoning “let’s play global thermonuclear warfare” over and over. I’m pretty sure that Jay’s worst nightmare involves me taking control of the iPod, as well as capturing the remotes for the television, cable, TiVo, and DVD players. As the Romans (and Jay’s dad) have been known to say, De gustibus non est disputandum – there’s no accounting for taste.

Lately my fear-fighting strategy has involved more stuffing than your average Thanksgiving. I’ve seen far too many physicians lately – many of them highly renowned specialists – who have used words like “cardiac event,” “unknown prognosis,” and my personal favorite “drop dead” with me. I have what I consider to be the rational human fear of death – amped up on several shots of espresso.

The awful part of it all is that I feel like now I have the most to lose. I am married to a man I love more than anything, except perhaps for our son. We live in a town we like; I enjoy my work; we have wonderful friends and families. But mostly, I am now a mother, and that has changed everything. I cannot stand the thought of missing Andrew’s life. It’s not that I think I am an extraordinary parent and that he would collapse without me. Hell, if I disappeared right now, he probably wouldn’t even have concrete memories of me. No, my fear is fundamentally selfish. I want to see him grow up. I want to watch him unfold into the person I see becoming.

Beyond the metaphysics of it all, I’m settling into the long, dreary haul that is a chronic illness. Now that the drama and tension surrounding my diagnosis and initial treatment have faded, the knowledge that the rest of my life will involve constant monitoring, at best, and likely frequent medicine changes and ongoing health problems has sunk in. The allure of the cardiac MRI, the main diagnostic tool for cardiac sarcoidosis, has worn off. Having these claustrophobia-fests four times a year is not how I want to mark the seasons.

In a couple of weeks, I leave to see my doctors on the East Coast. I’m nervous about the outcome of these visits, no matter which way it goes. Either they’ll switch me to methotrexate, a chemotherapy agent with long-term health risks, or they’ll keep on prednisone, a steroid with long-term health risks. No wonder I feel like I don’t have many options. Having a rare disease mostly seems to entail having vague doctors’ appointments, where the most common answer to my questions is, “We don’t know,” and the most common strategy is to keep my high dose of prednisone exactly where it is and re-check me in three months.

Integrating this morass of sadness, fear, and frustration into my daily life is a challenge I haven’t yet mastered. Of course, I can’t talk about it with Andrew; he’s far too young to share this. I want to be present for him and with him. While it may be emotionally gratifying in the short-term, I also won’t countenance sobbing in my room about what might or might not be. I want to take him to the pool, teach him piano, read him books, and play with his trucks with him. Like I said, I’m selfish. These things are important to me.

This is where the stuffing enters. It is possible to push fears down. It’s called denial, and although I’m sure every therapist in the country will tell you that repressing your emotions is a bad thing, I’m actually a big believer in denial – which seems to me like a highly evolved psychological survival mechanism. I am enough of a control freak to believe there is a proper context – a time and a place – for melting down. Right now just happens to not be one of them.

One of Andrew’s favorite books is Bedtime for Frances, in which a lovable badger has to confront all of her night time fears and fall asleep on her own. First, she thinks she sees a tiger in the corner, then a giant in the chair, and spiders crawling out of a crack in her ceiling. When she complains to her father that the “something” is moving the curtains, he tells her it is the wind and that it is the wind’s job to blow the curtains. “Everyone has a job,” he tells Francis, and says he will spank her if she doesn’t go off to bed. She ultimately manages her fear by reminding herself that it is the moth’s job to bump against the window and startle her. “It is my job to go to sleep,” she thinks before she drifts off. I’m not sure exactly why Andrew loves this book, but he does. I find it somehow redolent with the worst strains of Calvinism: we’ve all got jobs, even the creepy crawlies, and your job is to sleep. If you don’t go to sleep, I will spank you.

As I lay awake this morning after Andrew had fled the army of swans for our bed, poor little Francis came to mind. Why doesn’t Father Badger take her by the hand and watch with her as the curtains billow with the wind? “See, Francis,” he would say, “It’s just the wind. It’s OK to be afraid, but this is just the wind.”

It occurred to me sometime around 5:00 this morning that perhaps I should explore the relevance of this kid’s book. After all, it was keeping me awake, although my eyes felt itchy with fatigue. Maybe, like Father Badger, I’ve been squelching anxiety by threatening myself with a flogging. As the birds roused themselves and began to sing outside my room and the light hardened as it came through the curtains, I began to wonder about the merits of strength – the trait I typically most admire in myself and others – in handling fear. Can we do our jobs and just go to sleep when we are afraid? Is it possible to power through fear?

A friend sent me a passage from a Quaker hymn:
Blessed are the vulnerable
for they shall be broken
and in being so
shall break open
the heart of the universe.

I’ve been turning these lines around in my mind. They come unbidden, as they did today on the cusp of day, as I resolutely tried not to think about the world without me in it. Perhaps the way through the fear is to become open to the breakage. For a flash, I felt a peace that came through vulnerability. For that moment, I felt that it is time to take a look at what’s rustling the curtains and see that it’s simply the wind bringing with it the dawn. Or who knows? Maybe it’s the swans.

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