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Writer to the Stars

Writer to the Stars
Location
Dallas, Texas, USA
Birthday
August 15
Title
Writer to the Stars
Company
Mine
Bio
A long-time freelance writer who was fated to live in Dallas, Texas and marry a tall photographer. And who did. 31 years into it now. It seemed to be working. And then the whole damned roof fell in. But we've both been to the rodeo before, even this one, and we know what to do. You cowboy up.

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DECEMBER 23, 2009 1:03AM

No matter which road I take, I'm still going home...ver. 2.0

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Lately, rather than me living my life, I feel like life is living me. Most of the time I utterly hate it: this being blown around by one contingency or another like a dead leaf. Still, when I look back on my life, the one I had before my husband's stroke, I'm embarrassed by its triviality. Did I really blog about zombies for more than a month? (Yes, I did, and very happily.)

While now, plodding to a darkly Beethovanesque soundtrack, everything I do is quite necessary, and a lot of it is hateful. Still, to get my husband functional again, I've had to eradicate a lot of me: the part that whimpers and begs, the part that just wants to blog about zombies, but it's necessary to get the job done. Whatever job shows up.

Three days after my boy got his magic penicillin, he developed so many symptoms, by Friday that week, I started ticking them off on the SIDE EFFECTS sheet the pharmacist includes. Rash? Check. Swollen glands? Check. Fever? Check. Swollen mouth? Check. Swollen tongue? Check. Fissures on the tongue? Check. Persistent sore throat? Check. Swollen lips? Check. Blisters on the mouth? Check. Peeling skin? Check. Racking hiccups that continue for three days? WTF? 

We muddled through the weekend with me treating his various ills like a primitive. My only gris-gris were throat sprays, Cream of Wheat, aspirin, and antibiotic ointment. Glancing over at the twenty-five+ prescription bottles full of pills he was taking plus the empties, I muttered, "We need to see your doctor and have him go through these Christly pills. We''ll go right in on Monday," and my boy nodded miserably. He couldn't eat, he could barely drink, and he hurt like fire. But another uninsured trip to the ER would be $1000 or more. I'd stopped the penicillin on Friday, since it seemed the most  likely bad guy, and now he was only taking aspirin, two types of blood pressure medicine, and his insulin. Hic! He hiccuped hard, looking utterly exhausted. 

I hadn't wanted to do it, since he's diabetic, but now I gave him a teaspoon of sugar. "Hold it in your mouth for five seconds," I told him, "then drink this glass of water." He obeyed and, after two entirely sugar-free months, fell over on his side snoring. But not hiccuping, I thought, bitterly triumphant, hoping he wasn't in a coma.

Early Monday, I heard him calling me and raced in to see his face even more horribly swollen around the lips. He could barely speak. The hairs on my neck bristling, I pulled out everything warm I could find, and stuffed him into his clothes "Do dogdor?" He managed to say. "No doctor," I said grimly."we're going to the fucking ER." I tucked him into his jacket, positioned his cap on his head, helped him into the wheelchair, and raced him down the ramp. There was a fine cold drizzle and the sky was entirely white.

Once in the ER, I rolled him over to the Admittance clerk."Symptoms?" she asked. "What've ya got?" I asked. She looked at me stonily, but then she probably hadn't seen The Wild Ones either. One look from the triage group, though, and he was spirited into an ER room within five minutes.

(And here, what happens is painful enough that my authorial self, the narrative I, must bow out and allow the girl to make her appearance from stage left, in present tense.)

So the boy is slung onto a lumpy but massive automated Stryker bed, while the girl stows his wheelchair in a corner along with his coat, cap, and scarf. Schoolboy clothes, the girl muses, smoothing out a sleeve, and thinks fragmentedly, forever young. And then a med-tech whips into the room and, bang bang bang, grabs six vials of the boy's blood before he knows what's hit him. A nurse whisks in and hooks him up to a machine that eeps, chirps, and whsssts as it counts. The girl notices the boy's temperature is now 103.5F and feels her heart thud with the beginning of a panic.

The boy looks over at her, blue eyes brimming and desperate. His hugely swollen mouth is bleeding now and his tongue is thick as a biscuit. His hiccups still go on and on in their idiot rhythm, shaking him like a rattle. "Id woulda bed bedder if I di'd." He tells her, crying. And the girl cradles him, as best she can, finding him amidst the trailing tubes, the eeps, the cheeps, and the scary readouts.

"It wouldn't be better for me," she says, then kisses his hot, hot face and says the prayer: God, let this man live. Let him live. However he is or will be, I will care for him, but let him live, you mean motherfucker. His temperature is now 103.7F and a nurse practioner comes in. "Can't you do something for him?" the girl asks in a rage, "he's suffering so much, he's so sick."

"After I take a history," the nurse-practioner says a little too calmly, and the girl remembers this is their fourth time to the ER in six weeks, and it's always Groundhog Day here. She goes on auto: a massive mid-brain stroke, left-side is completely paralyzed, his mind is great, still has taste and smell, incontinent, confined to a wheelchair, viral infection, major MRCR staph infection, bacterial infection, Jesus Christ isn't there someplace this is written down? I keep telling you people this stuff over and over... "And the stroke happened when?"interupts the n.p. "September 26," replies the girl, while her boy interjects, "Dey dat'll live id idfaby." 

"He says it's a day that will live in infamy," the girl translates and the n.p. jots down something, and leaves for that rabbit hole where ER medical people escape the filmic hell going on around them. The girl and boy aren't special, not here, and there's a certain raspy comfort in that.

"Diggie jus wogged in," the boy reports, looking pleased that he can see Dickie Lee, their tomcat, prowling the ER.

"You're hallucinating," the girl tells him distractedly, glancing at the readout again. His blood oxygen level is scarily low, while his temperature is now 104F. God, let this man live. Let him live. However he is or will be..."Yeah," her boy agrees and tells her, "I'b wearig co'bat boots doo. Dere he'by. I c'n see dem." He waggles his long bare feet at her and goes hic, shaking all over.

"Combat boots?" the girl asks, "like you wore in New York, looking at galleries?"

"I gezz," he agrees listlessly, "dere berry heby do."

"I bet they are, sweetheart," she says, "I bet they're heavy as shit."

God, let this man live. Let him live. However he is or will be, you old bastard, I will care for him. You can bet your omnipotent ass on it.

Sometime later, the main ER bullgoose doctor appears. He's treated her boy before, a nice man, calm, with a gray buzzcut and pinkly clean hands.

He glances over at her boy: his stretched out bloody mouth, his waxy skin, labored breathing, the galvanizing hiccups, the terrifying fever. "I can do something about this," is what he says for a mercy, and shortly the nurse staggers in under a load of plastic bags containing various kinds of clear to cloudy glop. Some of it she injects right into the line, for some she stabs a port into his hand to drip directly, some of it is hooked into the saline. "He's being admitted," she confides while hanging various bags, "they're just waiting for a bed."

And not too long afterwards, they both hear the shout: "Transport!" The girl walks beside his bed, as she pushes the wheelchair with his clothes, until they get to the elevator. "See you tomorrow," she whispers to him, hoping it will be so, and he's whisked away like magic, like the way death comes.

In the outside world it's 2 AM now, cold, starless, and raining. The girl shoves the wheelchair, and from the corner of her eye, spots a dog trotting near Hall Street. It's a skinny purposeful urban dog. A dog that's going places, sniffing things. A smart dog too, one that checks for cars, waits for lights to change. A survivor: dogs or people, you can always spot them. The very sight cheers the girl momentarily, gives her heart.

It's on the drive home that she hopes she will never feel like this again. Ever. Alone in the black drizzling night, all prayers abandoned, all passions put on a high, high shelf. Out of sight, out of reach.

In her car now, just pushing through bleak weather.

Bereft.

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The wild ride of the spouse caregiver. Hang on tight. Fabulous writing and storytelling, as always. Your words are a pleasure to read, even if they are painful to live.
sweet baby jesus, wishing you the best and admiring your writing and please keep us posted
Wow. Wishing you the best. What a nightmare.
You are heroic--all caregivers are. Your husband is lucky to have you. But I understand the exhaustion and discouragement. I hope something lets up for both of you soon!
Sigh. How many kinds of hell was this? Even Young Clara Barton didn't sign up for this.

(Of course, we all sign up for this. Some of us just handle it with astonishing grace.)

Thinking about you. Hope this disaster has become less immediately disastrous.
I keep thinking about your title..no matter which road I take, I'm still going home. I'm not exactly sure how you meant it in relation to this difficult time, but it feels llike something to hold onto and so I hope, for you, that it is.
Oh Writer, thoughts and prayers. Your words are so strong even though you are feeling weakness.
After reading and rereading each one of your marvelous posts about your 'boy' and the exhausting, heart breaking, struggles, described with each piece I understand more and more deeply that this is the fiercest of love stories.

And, of course, I'm absolutely convinced that this boy of yours fully deserves every bit of the abundant care and devotion he receives from you.

He must have always been (and no doubt still is) one helluva great man.

Yes, these are all love stories at heart. They're about nothing else but this.
I hope he is feeling better and that you write about zombies again or anything else your heart desires. Sending you healing thoughts.
Just a spoonful of sugar...

That's the ironic earworm I got while reading this. And it reminded me that we're never far from chaos. It comes in a blink. And we must deal with it, one way or another, when it barges through our door. Sometimes it's like a science experiment. "Try a spoonful of sugar... Try taking this away... Try adding this."

Also, when I read this and your other chapters I think of how you have found only moments, and you are exhausted, and typing with one ear tuned. My human response is to wish my hands could help. Thank you for being here. We're here on the other side of your screen, reading.
Those of us who have been caregivers cringe especially at the powerful simplicity and rawness of this awful happening you write about. (And yet another example of our unfair healthcare system.) Wishing you both well, and hoping to read you more as you deal as best you can with the difficulty.
God morning, dearest,

I read this in the middle of the night. Just now made myself some coffee and decided to use my Super Woman mug in honor of you. I know though, there's nothing Super Woman about what you're doing. You're doing more than Super Woman could likely pull off.

Those medical people... so rarely are they good with the jokes, eh? I hate that. Might we at least smile a little? Some wry humor? Perhaps just a little joke here in this ER, in this neuro clinic, in this godawful waiting room?

I send love and support when I would really like to send myself or better yet, my sister who is an excellent in-home nurse. I'd make you laugh more, but she'd make your husband feel better.

All love to you and your boy today. All love.
Great writing. I'm wondering how you can find time for such good texts? Or you might be very fast.
"this is a love story about two imperfect people".....God bless you and your boy. Peace & Love to you both. It's got to be SO hard. We will stay and read if you will keep coming to write.
I have hit the wrong button before too :) I hope we can somehow, by listening, help you find some peace. Your strength is amazing.
I am constantly amazed at how beautifully you write about things that are not always so beautiful. I always leave feeling hopeful.
Oh, I've hit update too instead of save. You can always copy it, delete the post and paste it back on a new post and keep working on it.

I hate the side effects that the Doctors don't seem to care about: bruising, peeling skin, loss of sex drive etc., weird red and purple marks coming to the surface of the skin. Arrrgggghh, heartbreaking and frustrating but zen does always help one cope, doesn't it? Hang in there!
Oh, Writer to the Stars. Nothing to say, but White Light to you. I visited a friend today whose husband has dementia and is in the last stages of pancreatic cancer. My heart is with the both of you.
Oh my god, oh my god, oh my god....Writer Writer Writer, you are something else, not just with your words and the way you use them, but what they say...shining and powerful. Your heart is so big it could burst, but it just gets bigger and bigger and takes it all in. God bless you and your man.
You are one of the most underrated and superb writers here. That you share this part of your life with such craft, heart and intelligence is a testament to your many talents. My heart goes out to you. Wishing you and your husband health and love.
Sometimes the ride gets bumpy, sometimes it's smooth but in every facet one thing shines through.
Your love.
Aw, fuck. I'm off this week except for Wednesday. Can I help?
This is one of the most powerful personal essays I've read. I kept thinking, "She's describing love in hell."

But as you say, it's just one locale on the road home. I hope that road soon emerges into a more welcoming landscape.

And I hope insurers not covering your husband suffer unspeakable torments for eternity. (I realize that's not a spiritually mature wish, but there it is.)
I am amazed by what you have to go through. Thank you for sharing it with us.
"Still, when I look back on my life, the one I had before my husband's stroke, I'm embarrassed by its triviality. Did I really blog about zombies for more than a month? (Yes, I did, and very happily.)"

This is fascinating. There is no upside to hell.
But.
But.
There are always choices. What one does under extreme conditions. How one choses to think about the extreme.

You could use some Luck about now. I would give you some, if I had any.
Courage, my dear. Courage and grace. You may think you're just chopping water here, but it seems remarkable to us.

You know that, don't you? I'm sure it doesn't seem heroic when you're waist-deep in catheters. But you're my hero.

As a person, I mean. As a writer, you are my arch rival and I am crazy jealous of your talent. ;)
What're you doing New Years -- New Year's Eve? Need some company? I wouldn't mind a little road trip.
ugh, ugh. Great writing. Might reconsider calling God a mean motherfucker...I'm jest sayin'. Hang in there!
Let him Live. This kind of scenario does make one appreciate the calm, competence of the doctor when he arrives.

Please keep us informed when possible. BIG HUG for courage to you!
Hawley got it exactly right.

You're describing love in hell.

And WSFTC also got it right.

You ARE glorious.
Hanging in there with you . . . and fully prepared to cuss out the old bastard upstairs as needed, on behalf of you and the boy.
holyshit I've been going through your entire blog tonight, getting caught up, and haven't left any comments, but this one slayed me.
Harrowing. Your poor boy remembering his Doc's. Shit fire, girl, this is hard reading, but absolutely compelling. Please keep writing. I really don't have the right words right now. Keep writing.