This Is All So Familiar

March 6, 2012 at 2:09 pm (Uncategorized)

“We never give up. We begin anew.”
Lars Gustafsson, The Death of a Beekeeper

I am back. Barely.

I disappeared for the past couple of weeks because I’ve been weathering a sarcoidosis flare-up. My ankle injury upset the jury-rigged functionality I’d pieced together with the help of four different immunosuppressants and good luck.

“Why is this happening?” I asked my doctor a week ago, when I washed up in his office with escalating vertigo, blind spells, headaches—and a fun new manifestation of neurosarcoidosis, a shrill ringing in my right ear.

“You are fragile,” he said. “It doesn’t take much to set off your disease.”

It’s really quite amazing how quickly your life can fall apart. One minute you’re dropping your kid off. You take a bad step and pop your ankle ligaments. Suddenly you can’t walk, can’t drive, can’t even sit because lowering your leg causes it to throb. A few days later, your world starts spinning—literally.

We are all just one step away from radical change.

It didn’t help that I’d been here before, that twice before I’ve ruptured ankle ligaments that had then kicked off my neurosarcoidosis. In some ways, it was almost worse knowing what was coming. I do better when catastrophe comes unannounced.

There’s nothing to do but get through it, though. Well, that and get a shitload of IV prednisone, to try and knock the disease back into submission. A week after getting 1,000 milligrams of prednisone dripped into me, I feel like I’ve turned a corner. The vertigo has eased. The ringing has stopped, and my vision has been less sporadic. My ankle, too, is less of an unmitigated disaster. I’ve been able to start rehabilitating it and am walking tentatively with a sturdy brace on it.

For the last few days, I’ve been trying to scratch my way out of the hole the disease dumped me back into. I cooked dinner for Jay and Andrew for the first time in weeks. I made my bed. I checked my email. I thought about writing. I got reacquainted with friends. I quizzed Andrew for his spelling test. I folded a load of laundry. I ventured downstairs and fed the cats. Once you lose your footing on the scaffolding of everyday life, you realize how important it is—and how much you don’t want to lose it.

This cycle of falling apart and then rebuilding is familiar to me. All of us in Chronic Town know that this is just the way it is. We have good days—or weeks or months if we’re lucky. And then, inevitably, we don’t. Sometimes there’s a reason for our relapse—a bad step of one kind or another—and sometimes there isn’t. But, suddenly, we’re back to being sick, to being at the mercy of illness. It’s like a lesson in entropy from high school physics. Things fall apart, break down, seep away.

I will keep climbing out of my latest setback until I can’t. I’m tired of having to re-climb this same stretch of incline. But would I have it any other way? Would I give up climbing back to spelling quizzes and Earl Grey tea with milk and nestling myself into the hollow beneath Jay’s neck to watch a movie with him? Would I stop stretching for the basket of laundry, for the snap of shaking a shirt before folding it, for the smell of Dove soap and boy sweat on Andrew at night?

No. Although I am tired, I will keep climbing until I can’t.

12 Comments

  1. prudencemacleod said,

    You have all the courage and strength you need to succeed in rebuilding yourself. I have no doubts about your ability to overcome this adversity. I wish you every joy and success on this most difficult journey. Bless.

  2. Elaine Smothers said,

    I’m sorry things have been so rough in Chronic Town lately. I hope you continue to steadily improve and are soon blessed with better days ahead. We missed you in WANA and it’s good to have you back!

  3. Leanne Shirtliffe said,

    And yet exhausted and spent beyond what I know, you pen the most beautiful phrases, like this one: “the scaffolding of everyday life”

    Sending you health and energy, my friend!

    Hugs.

  4. Rayna said,

    I’m so glad you climbed your way back up! I’ve missed seeing you! Glad you’re on the mend. Much love, Rayna

  5. Barbara Barnes said,

    You have surpassed yourself, really, in grace, in grit and in the moment in each sentence… sending love and care.

  6. Ellen Gregory said,

    Oh, Rebecca, we’ve missed you! I don’t know what I can possibly say that will make you feel better, but I’m glad you’ve turned a corner. Your courage and grace (as Barbara says) are an inspiration.

  7. Randy Bekkedahl said,

    Beautiful piece, Rebecca. Graceful, flowing, poignant,. Sometimes, always on a good day, when I’m in a good place, I think I wouldn’t be there if not for all the bad that has happened. Maybe it’s because those of us in Chronic Town appreciate the little things more after they’ve been taken from us, again. And when they return, we notice them. Whereas normies take so much for granted, not realizing how quickly things can change. They rarely stop and think how lucky they are for the day to day ordinary things.

  8. Marianne said,

    This is wonderfully written. I think you are amazing.

  9. allergysafecuisine said,

    I know how hard of a struggle it can be. I have the pulmonary form of it myself, currently undergoing a nasty flare-up. Take it one day at a time — one hour at a time if you have to!

  10. Basil Rene said,

    I have enjoyed your blog tremendously with every posting and I nominated you for the Versatile Blogger Award. Congratulations! See the post at this link http://lifewithsarcoidosis.com/2012/03/26/versatile-blogger-award/ and I look forward to many more posts from you. All the best! Basil Rene –http:// lifewithsarcoidosis.com

    • Rebecca Stanfel said,

      Thank you, Basil! What an honor. I am sorry for my delay in writing back to you. WordPress relegated your comment into a “pending” file–and I am only now seeing this. I really appreciate you thinking of me.

      I’m looking forward to reading your blog again soon. I’ve been having a bit of a rough patch, and reading has been hard for me. But I think I am improving.

      Thanks again!
      rebecca

  11. nan said,

    Here’s how just a small group of words can point you to clarity. Dx’d 11 years ago, I feel my trip with this disease has been 1 step forward, 2 steps back – though I am sure there have been better times, I’ve just gone backward for so long. The sentence “You are fragile, It doesn’t take much to set off your disease” describes my life to a tea but reading it is thoughj I never grasped this! Instead, “geez, now what”, “how come”, “not again”, “give me a break”… Today I will embrace those words, and I thank you again. n

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