Alternate Reality

January 3, 2007 at 2:03 pm (Uncategorized)

In case you haven’t noticed, I’ve been avoiding writing. I’ve also been hiding from phone calls and holiday good wishes. The people who know me the best, and who worry about me the most, are the ones I send the most quickly to voice mail when my phone rings. I plan on calling them back later, but somehow just never get around to it.

I’ve been hiding from my life, or, more specifically, from the telling of it. To be fair to myself, I’ve done an acceptable job of handling my responsibilities as a mother to my son, Andrew, and a partner to my husband, Jay. Probably this is because they don’t ask me the single question that makes me want to stick my head in an oven or hide under my bed until the next new year rolls around. Three simple words have converted me into a hermit: “How are you?”

Answering that question, which is asked with nothing but kindness and the best of intentions, means that I either need to confront the new terrain of my life and illness and explain the dramatic downturn that has flattened me, or else blandly lie and tell everyone I’m just fine – and to have a happy new year. Either option ultimately involves coming to terms with a reality I simply don’t want to accept.

I’m out of remission, if there is such a thing in the grey scale land of sarcoidosis. The flurry of testing the doctors performed in December revealed a “significantly enlarged spleen” and arthritis. As best as I can understand, the experts believe the disease is hop-scotching through my organs. Whether or not it has returned to my heart is anyone’s guess. I’d need to have a cardiac MRI performed to answer that question. But the doctors simply ordered me to increase my prednisone without waiting for additional testing. I never got below 10 mg. of prednisone a day.

I know the situation could be far more depressing than it is. After all, there are many worse things to have than inflamed joints and an overweening spleen. I’m still walking (albeit gingerly on my sore feet) and talking (when I’m not hiding from my friends) and writing (when I’m not avoiding the page and my achy fingers). I think what got damaged the most in my rapid return to the land of the chronically ill wasn’t my internal organs or my bulbous hands but my pride and my sense of myself.

Like everyone else in the country, I’ve been narratively conditioned by movies and television shows. I’m not trying to speak nonsense here – merely explain that I have a vision of how stories should resolve themselves, and that this vision comes in part from watching dramas and romances nicely wrap themselves up in a 30, 60 or 120 minute narrative arc. Here’s how Hollywood would script my illness:

New mother and Plucky Young Woman (PYW) gets diagnosed with a frightening disease. She struggles with images of her own death and the thought of leaving her precocious toddler an orphan. Intersperse images of the PYW going to doctor’s appointments with scenes of her spunky child teaching the new mom all kinds of valuable life lessons – one of which is, you can’t control life. The PYW is put on a difficult treatment regimen that leaves her once svelte and muscular body plump and flabby; nevertheless, the PYW keeps going to the gym and persevering (play a beat-driven song with undertones of the Rocky theme with scenes of PYW sweating on the stairmaster). The PYW fights the disease with every fiber of her being, goes into remission, and is allowed to end her difficult treatment. The pounds melt off of her, her cardiovascular health returns, and she emerges from the claws of illness a better mother, a better writer, a better wife, and a more sensitive human being. Although the important take-away message of this tele-drama is that you can’t control your life, the PYW has done an admirable job of just that. As credits roll, play Destiny’s Child’s “Survivor.”

Well, that sure didn’t happen, though you can see through my blog entries how much I have tried to push myself – and my out of control illness – into these parameters. The pounds didn’t miraculously fall off my thighs. In fact, I’m not sure I lost an ounce on the lower dose of prednisone. I can’t even make it to the gym now that my hands and feet are swollen and the increased exertion makes them swell even more. My stomach and chest throb because of my spleen (or so say the experts). And in the face of my internal tele-drama, swallowing more prednisone every morning feels like a colossal failure. The only soundtrack that suits my life now is a Bach fugue or some other minor-key dirge.

What’s doubly annoying is that I had been warned that this is just what might happen. When I asked my sarcoidosis specialist in Philadelphia if she thought I was going to be one of the lucky few who have sarcoidosis involving multiple organs, undergo a course of steroid treatment, and still go into a blissful and lifelong remission, her response wasn’t just guarded. Instead she told me that “you never know, but that’s not very likely.” You’d think I’d have noticed the “chronic” in chronic illness, but I was too busy anticipating my own heroic recovery.

For the past few weeks, burying my head in the sand and reading a lot of mediocre novels has seemed like a perfectly adequate coping mechanism. But people are starting to worry about me. Hell, I’m starting to worry about me. Like it or not, this is the version of reality I have to deal with. There’s no music, and nothing wraps up neatly at the end of two hours. But I promised to write about life in chronic town, so expect me back here tomorrow. Just don’t ask me how I’m doing.


  1. Don said,

    Glad to hear your voice again. We love you.

  2. Cathy Krohne said,

    I found your page today. It was like a pinpoint of light in the dark. I think I am having my first recurrence of sarc. Diagnosed in June/ long story as they all are…., down to 10 mgs from 60…today upped to 30. I have subconsciously been aware of “hiding from those who love me best” but couldn’t verbalize it. Couldn’t “see” why i would be doing such a thing, yet knew I was….

    I want to cry tears of relief, just to know that someone, somewhere knows how this feels. The “failure” of upping the prednisone. The ‘good intentions” of being a strong, determined patient and kicking sarcoid in the butt…. and coming up short.

    Thank you …

    Cathy Krohne 49 Sarcoidosis

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