Sinking In

June 27, 2006 at 10:12 am (Uncategorized)

I have a question for all of you readers who have been playing the chronic illness game longer than I have. Does the knowledge of your disease ever sink in permanently, or do you have to continually relearn that your life is fundamentally different? The reason I ask is that I seem to be doing a fairly lousy of job recognizing – and accepting – that, as Yeats said so much more eloquently than I ever could, my life is “changed, changed utterly.”

I’ve only had sarcoidosis for two years, but it seems like in those months I have had to relearn perpetually what it means to have this illness. It means never feeling entirely well, even on good days. It means never being able to take for granted how I will feel tomorrow, or next week. It means I spend much of my free time in doctors’ offices. It means that the scary pronouncements these doctors have delivered will pop into my head at the most inopportune times – watching a movie with my husband, bathing my child, or teaching a writing class. It means the medications I take are usually more bothersome than the disease itself. It means every time I am around a sick person, I will catch their cold, flu, strep throat, stomach bug, whatever. Mostly, it means never being able to get away from sarcoidosis. It pursues me like a jealous ex-lover, catching me eventually, even though I have changed the locks, gotten a new phone number, and taken out a restraining order. Once it has found me, it grabs me with its bony fingers, and then I re-remember, relearn, readjust to my reality. Over and over again.

“Wow. Feeling a tad dark today, Rebecca?” I’m sure you’re thinking. Why yes, I am. I’ve been sick for going on three weeks with pneumonia. Yesterday, during my scintillating day of napping and running a fever, I squeezed in a doctor’s appointment and started my fourth antibiotic. The highlight of my visit with Dr. Doogie of the Blue Eyes was being told that “we’re running out of classes of antibiotics” to give me.

In the midst of all of this, a clearly articulated thought popped into my head – this is the way my life will be for the rest of my life. And it depressed me mightily to learn this anew, yet again. My solution to the re-realization that having a chronic illness sucks was to eat a very large helping of ice cream. Not the most productive outlet for anger, sadness, impatience, and bitterness, but, let me tell you, Dreyers does make an excellent pralines and cream.

Sometime after dinner, though, the fog in my head lifted a little. The sun didn’t shine through, but I didn’t feel quite as though I was in the clouds and mist of Wuthering Heights. What cheered me up was playing an after-supper game of Chutes and Ladders with Andrew and Jay. There’s nothing like watching a two year old’s version of a board game to put things in perspective. Andrew has no concept of winning the game or advancing the pieces. His idea of playing Chutes and Ladders is take the cut-out game pieces, name them, and then have them play together on the “slides” of the board. Last night, he christened Leonard, Bobby, and Annie. Mostly what these three characters did was say, “Hello, my name is…” and then step on each other’s “feet” (the plastic stands they are propped up in) before getting to the important work of sliding.

For a while, I couldn’t decide what was more amusing – watching Andrew say for the fiftieth time, “Hello, my name is Leonard,” or watching his father attempt to enforce some type of rule-based system to the whole process ( “No, Andrew. You spin. See you spin. Spin. And then you go…No. You had a five. That’s five spaces. No. You’re not at the ladder yet…”) before finally giving in to Andrew’s version of the game and saying, “Hello. My name is Bobby” back to Leonard. Who would have thought three years ago that this would be our lives? In all my imagining, I never would have thought that something so silly and prosaic as misplayed Chutes and Ladders would feel as important as it did.

And that’s when it hit me. Having a kid is a whole lot like having a chronic illness (and I don’t mean just because they both are expensive, time-consuming, and mess with your sleep cycle.) Andrew has changed everything about our life – from the small to the grand. Not only have our ambitions and plans changed utterly, but so too have the day-to-day details of our existence. I sometimes think that nothing about our lives now would be recognizable to our pre-baby selves. And just like I’m continually relearning what it means to be sick, so too am relearning what it means to be a mother. Every day.

Perhaps I can learn to approach the vicissitudes of illness with just a pinch of the grace I have when it comes to all things Andrew. I have let him turn my life upside down, and I re-recognize this every time I change poop-laden underwear in Safeway or toss my own book aside to read Frog and Toad or Curious George Takes a Job for the billionth time, or when I plan my days around outings to the town’s construction sites. I have accepted these changes.

Does this mean that having sarcoidosis is a good thing? Does this mean I would turn down a cure or at least a pill that made me feel consistently better? Does this mean I value the sickness? No, no, and no. But I have it, and it has changed everything, no matter how diligently I try to forget that. Maybe instead of running from it, if I slowed down and accepted that everything has “changed, changed utterly,” maybe, I’d get to the poem’s end: “a terrible beauty is born.” Whatever that means.


  1. Paul said,


    Acceptance is important, hard but important….. it’s tough to have to ask for help with simple tasks you used to do , tough when you can’t play with your kids as hard or much as you’d like, tough when you have prioritise what’s important and what’s not and it’s tough when things you love to do have to stop.

    It’s hard not to feel guilty when you say no I can’t

    You change but hopefully in the end you get stronger

    But this disease is strange, it’s like a mythical hydra, when you cut off a head another grows to replace it. You take a different drug and one symptom gets better and another one appears , Or so it seems to me from my two years on the rollercoaster


  2. rebecca said,

    Wise words, Paul. It really is like a hydra.

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