It’s a Bird, It’s a Plane, It’s… Super Goose!

December 7, 2007 at 11:15 am (Uncategorized)

Last week Andrew learned about super heroes. Of course, he’s seen dozens of trick-or-treating Spider Men on Halloween, but because my husband Jay and I persist in our sysiphisian efforts to shield our nearly four-year-old son from the casual violence of popular “entertainment,” Andrew hadn’t yet fully comprehended the gestalt of the Super Hero — that these men and women have intriguing special powers, that they rescue innocent people and take out bad guys, that they get to wear cool costumes, and that many of them wield outrageously effective weapons.

It was the weapons that hooked Andrew on the various super hero stories that we told him to induce him to eat his dinner. (“Two more bites and we’ll tell you about Bat Man!”) I can’t say Andrew’s fascination with the big guns surprised me; I just felt the same rueful twinge I get when Andrew runs around the house using his hand as a gun while making shooting sounds, or when he drags a small log into position in the yard and declares, “I’m about to blast my cannon!” I’m learning what liberals need to remember come election time: people like guns. (Especially small boys.)

After dinner, frantically jumping around fueled by the sugar of his dessert and the excitement of his new knowledge, Andrew began to invent his own super heroes. Sure, Bat Man with his Bat-Mobile is cool, and Super Man can soar through the air with his cape billowing out behind him. But they’ve got nothing on Super Goose. Super Goose has (and I quote directly) “cannons and guns and knives and pistols and swords and weapons of all sorts on the ends of his feathers.” With his deadly feathered arsenal, Super Goose “kills bad guys.” While I was indeed impressed with Super Goose’s weaponry, I was having problems imagining the fellow. “Is he a man dressed in a goose costume?” I asked Andrew. “Or an actual goose?” Solemnly, Andrew answered, “He’s a real goose.” We did our best to suppress our hilarity at that vision — and then about Andrew’s next super hero creation, the category challengingly-named Super Monster, whose mission was “to kill bad elks.” (Hunting season just ended up here, though we couldn’t help picturing service organization members gone to seed. “Oh, God! The Elks are meeting at the Lodge tonight. Lock your doors and close your shutters!”)

It made for an entertaining evening, but I really didn’t give any more thought to Super Goose and his compatriots until yesterday, as my thoughts turned dark and self-pitying. In the past three days, I have learned that in addition to having endured one rare form of a rare disease (a cardiac manifestation of sarcoidosis), I now have two more rare presentations of it: neuro-sarcoidosis (affecting not my brain matter, but my cranial nerves) and osteo-sarcoidosis (affecting my bones), to accompany all of the more prosaic sites on my body the disease has appeared (lungs, lymph nodes, liver, and joints). Worse, these neurological and bone episodes have occurred while I’m on the highest-tech, gold standard treatment for sarcoidosis (a monthly infusion drug called Remicade, which suppresses critical aspects of my immune system). Think of a cockroach growing stronger while you are spraying it with Raid.

I was feeling particularly persecuted because of how the discovery of the osteo manifestation came about – two days ago on a trip to Missoula to meet with an orthopedist specializing in foot disorders. I was sent to see her because my local orthopedist diagnosed me nearly six months ago with a stress fracture in my right foot. Since I’ve been taking high doses of prednisone for a long time (prednisone is usually the first agent used to treat sarcoidosis), and prednisone can cause significant bone thinning, and an MRI and a bone scan showed “significant edema” in the sore foot, diagnosing a stress fracture was a slam dunk. Or so the local orthopedist thought. So I spent six weeks in various orthopedic boots; then two weeks in a walking cast; then another six weeks in new cast with instructions to avoid putting any weight on the bad foot. Since I can’t use crutches (long story), this meant I had to get around my house on a collapsable non-motorized scooter (and then practically wield a Super Goose-ian weapon to get Andrew off the contraption so I could actually use it). Despite all this, the foot continued to hurt. Something wasn’t adding up—hence the trip to the specialist. The Missoula doctor took one look at my MRI and declared, “That’s not a fracture.” All my foot treatment for the last six months had been misguided. My cast came off, revealing a withered, hairy, and foul-smelling leg. The Missoula doctor e-mailed my MRI to a specialist radiologist, talked with my own sarcoidosis specialists, and diagnosed the problem as bone sarcoidosis.

On top of that, my neurological symptoms have trapped me in bed with a headache unlike any I’ve experienced before, with searing pain behind my left eye socket and left temple. The left side of my face has gone completely numb. Reading and writing make the room spin and my stomach heave. (Not to make y’all feel too guilty, but this writing session has already caused one trip to the bathroom.) The sarcoidosis specialists have said that “hopefully” the Neurontin they recently put me on (which blocks nerve pain) will soon build up to high enough levels in my body to alleviate this mess.

What is it with this disease that makes its powers seem unstoppable? It pops up in my body wherever it wants. I’ve written before that having sarcoidosis is like playing Whack-A-Mole—the video game where you try to bludgeon a yard-destroying critter with a mallet wherever it raises its head. My doctors chase the disease from organ to organ. “It’s in your liver!” “It’s in your bones!” “Wait, it’s in your brain and your heart…” Pondering my illness’ passion for variety (why can’t it just pick an organ and stick with it?), I had one of those thoughts that that I usually forbid from entering my mind: “Sarcoidosis is going to kill me.” I was too tired, in too much pain, and too drugged on pain killers and nerve blockers to stop myself from thinking this, from feeling the utter defeat of my body.

I will remember this thought, which came whole into my mind, because fast on its heels came another, emerging like a quartz crystal from dirt: “But what about Super Goose?” And I started to laugh and laugh in the bed to which I have been bound lately. The sheer ludicrous image of Super Goose—and the thought of my son’s beaming face conjuring him—was enough to bring forth belly laughs. What would Super Goose do for me, I wondered? Why, he would kill the bad guys within me. I pictured the rush of Super Goose’s feathers as he flew through me, his cannons firing, his knives flying, blasting the sarcoidosis out of me, leaving my bones white and strong, my brain normal, and my heart thudding regularly. He would honk goodbye in a chivalrous way, going on to kill the next bad guy, the next weird disease afflicting another hopeless person somewhere else.

Andrew’s fantasy gave shape to something universal in him—and in me and in all of us. We are drawn to the world of Super Heroes and Super Villains (avian, bovine or otherwise) because we need to name and give shape to the shadows that are bigger than us, the roaches that seem to grow no matter what we do. We need help to think the thoughts we cannot let ourselves think. And then we must do battle against those thoughts.

I will not let this disease be the end of me. That is why I am sitting up and writing today, even though it makes me throw up. That is why I force myself to have dinner with Andrew and Jay at the table every night and why I force myself to talk about things besides this stupid disease. Last night, we talked about dog breeds. The night before, it was the construction equipment we saw in Missoula. Sarcoidosis can root around my body like a mole looking for a perfect bit of turf, but it will not kill me. I will not let it. And neither will Super Goose. Did I mention that his feathers are bullet proof?

6 Comments

  1. Nedra said,

    I LOVE this, the earnest, the serious: Super Goose is a REAL goose.

    I saw the strongest most beautiful geese on the Missouri yesterday Andrew — those geese can really fly and they’ve got muscles, and now to know that Super Goose has “cannons and guns and knives and pistols and swords and weapons of all sorts on the ends of his feathers” — whoa!!! I mean, WHOA! This bird is powerful. Much love and affection to you three, Nedra

  2. Amy said,

    Super goose’s wings are bullet proof… And so are you. Not your body mind you. I will acknowledge you are feeling the effects of being caught in one too many gunfights, but your soul Rebecca is bullet proof. I have known you before you were a wife, a mom,… before you were sick. And you are just as strong and beautiful and kind and funny and brilliant as you have always been. Well, actually more so… I know you feel your dark days, but your words can always brighten mine. I am so proud to be your friend.
    Love Amy

  3. barb said,

    Super Goose…soft downy feathers(bullet proof), inscrutable guidance system(memory), determined protector(loyal)…gotta love that Goose. Gotta love that inner Goose, making it to the dinner table, making it through the blog(so elegant and articulate), making through the shifting sands of inconsistent diagnosis after inconsistent diagnosis, and finally, landing in the middle of paradise..a belly laugh brought on by the creative reflections of a busy child…cool.

    Ditto to Amy…you are all that, and more. Caring your way!

  4. barb said,

    Rebecca..I love David Whyte and this poem about starting where we are, at the end of one journey to start the next, just when we thought it was too late… please take this as a poem of encouragement,

    THE JOURNEY

    Above the mountains

    the geese turn into

    the light again

    painting their

    black silhouettes

    on an open sky.

    Sometimes everything

    has to be

    inscribed across

    the heavens

    so you can find

    the one line

    already written

    inside you.

    Sometimes it takes

    a great sky

    to find that

    small, bright

    and indescribable

    wedge of freedom

    in your own heart.

    Sometimes with

    the bones of the black

    sticks left when the fire

    has gone out

    someone has written

    something new

    in the ashes

    of your life.

    You are not leaving

    You are arriving.

  5. Paul said,

    hey Rebecca

    What can I say . . . . I wanna be Super Goose too!!!

    Paul

  6. Paul said,

    Actually it sounds like a series of Kids books

    Super Goose and the dreaded Sarcoid monster

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