“Asking for help with shame says:
You have the power over me.
Asking with condescension says:
I have the power over you.
But asking for help with gratitude says:
We have the power to help each other.”
― Amanda Palmer,
My husband had a stroke Sunday night. One minute we were sitting in the drive thru at McDonald’s discussing what to get my elderly mother for dinner, and then next, Bill, who is driving, suddenly clutches his head and screams that he’s so dizzy he can’t see. He’s promptly violently ill, and I tell the guy at the drive thru window I’ve got a medical emergency and I push the car out of the drive thru area and over to the parking lot. My first thought was, “He’s having a stroke.” and I call paramedics.
You have to know this call is a bit spooky. A week before, my husband escorted me to T-Mobile and insisted I get a new phone. My old trusty LG MyTouch which I’ve had for five years, was locking up on me, and every time it did, I had to pop out the battery and slap it back in again. He said, “You need a new phone. What if you have to dial 911?” I grudgingly agreed because my mother is 85 and has moderate Alzheimers. Her judgement is poor and it is like living with a teenager sometimes. I never know what I’ll get home to in the evenings when I come in from work.
Flash forward to Sunday night at McDonalds. I’m dialing 911 with my new phone. The paramedics take us to Desert Springs, and we are lucky to get a space not in a hallway but in a real ER bay. Las Vegas emergency rooms are always full because we don’t have enough hospitals to handle our local population of sick people plus the amount of visitors that come here and become ill. I think we may be the only hospital system in the nation that lets you know ER wait times by text and one where you can also make an appointment to be seen.
Jump to 14 hours later and one long, cold night leaning against an exterior wall, covered in blankets, my coat, my UNLV hoodie, and sleeping, when I can, because Bill is out of it, with my face on a towel (no pillows in the ER) pressed into the wall sharps container. The MRI shows he’s had a cerebellar infarct. In plainer terms, he’s had a stroke in the cerebellum. The brain is swelling and he’s developed atrial fibrillation…or rather his heart is just sitting there quivering rather than beating strongly. He’s slowly becoming more and more lethargic, and harder to wake up. He’s having trouble speaking and communicates in monosyllables and sometimes the words are reversed. He’s also complaining of double vision and is confused about time…the last easy enough to do in an ER that seems perpetually in twilight mode. They give him heparin, a blood thinner to prevent more blood clots. Then, they take him off in preparation to transfer him. Except there’s a political wrangle going on between hospitals. Just because the ER neurologist says “This patient needs immediate transfer and prep for neurology surgery!” does not guarantee it will happen immediately. Well, okay, if the brain is bleeding it might but Bill’s brain wasn’t so that’s a GOOD sign, right?
8 more hours go by. I have to leave. Mother isn’t answering her cell phone which means she’s accidentally turned it off and doesn’t know how to turn it back on again. (PUSH THE RED BUTTON, MOTHER) She’s also not answering the secondary phone so she’s either fallen and she can’t get up or she fell asleep waiting for food. I go home. She’s fine. Dogs are fine but desperately need to pee. Bill calls and we have a very confused conversation. They call. He’s going to be transferred to Spring Valley. They are taking him now. They have a room. He’ll be fine. They’ll look after him.
I wake up with the phone still in my hand and I look at it stupidly before I realize that’s my ringtone. 6:45 am. Its the Neurosurgeon from Spring Valley. They need to take Bill to surgery RIGHT NOW because the ventricle in the brain has moved, his brain is swelling, cells are dying and he’s bleeding. They need consent. I’ll be there in 15 minutes, I say and make a mad dash to get dressed, throw cinnamon rolls at my mother, dump some food in a dish for the dogs, check on Pudge’s ear (because he just had 9 rotten teeth removed and his ear operated two weeks ago, I know the hits just keep coming around here) I drive like a mad woman out to Spring Valley and hike it into the floor only to find out, he’s in preop. So, they take me to preop. I sign forms. Meet surgeons and Bill is trying to wake up and get out of bed. I hug him and tell him I love you before they wheel him off.
And thus commences possibly the longest 5 hours of my life.
We Livingstons and Browns don’t just get a tiny bit sick. When we get ill, its usually life threatening, terrifying, and dramatic in ways that are worthy of reality television. Nausea inducing, like Kim Kardashian’s wardrobe. (I jest. I know more about Kanye West than I do her, and that’s not saying much. I’m into EDM, what can I say?) My mother holds the record for single most terrifying surgical complexity, an award she won back in 2006, when she fell, broke her ankle, had a heart attack, plugged up both her carotid arteries, needed a triple bypass, had fluid in her lungs from the bypass and had to be tapped like a keg of beer, and managed to lose her ability to swallow. All in May, June, July, August, September, and the first part of October in 2006. The bypass surgery alone was 8 hours, in which I sat in the waiting room at Deaconess Hospital in Oklahoma City with my friend Beverly. I can’t tell you what we did for 8 hours. I think I wrote a paper for my Education Masters. It must have been good, they awarded me the degree but for the life of me, I have no idea what that last paper was about. This was the second worst.
Bless Vickie, one of my husband’s bosses, and friend. She brought me bagels and yogurt because I’d forgotten to eat. Thank you again, Vickie.
So, I wait. When I finally get worried that this one set of numbers on the screen showing patient progress isn’t moving, and I’m not even sure that’s Bill’s ident number because nobody gave me that information before wheeling him off, I call patient information.
And get the royal runaround. I admit. There’s a guy running around that hospital who has half an ass, because I chewed it off, and its not his fault. They keep transferring me back to him, like he’s the Oracle of Delphi. Chris, dude, I’m sorry man, I really am. But zero coffee, stress, fucked up blood sugar, and inadequate sleepage makes me a serious bitch. My sweatshirt from school that I was wearing that day says Be Kind Like Josh. It should have read, “Don’t Be a Bitch Like Lisa, Everyone Has A Hard Life.”
Clearly, not my finest hour. I go back and sit down and fume for a bit. Finally, one of the admitting escort Angels comes zooming into the waiting area, another patient waiter in tow. I pounce on him and tell him my plight and he agrees to check on things for me. He does, and the numbers that aren’t moving are my husband’s. More nausea. They’ve been in the operation room for almost 5 hours by this point. The surgeon originally told me an estimate of 3 hours. I imagine terrible things.
Then the surgeon comes bouncing out, Admitting Angel trailing along behind him, and tells me that Bill is okay. He’s in recovery. He’ll go to ICU. I move up to the ICU waiting room and discover there’s a fiesta going on. Someone in ICU is dying, they are celebrating and its Dia de los Muertos all over again, except its a hospital so no whiskey. It was surreal. They had a picnic and the tamales smelled really good and reminded me that I had a pastry in my bag.
Except that I didn’t. All I found was the wrapper as I ate it but don’t remember eating it. I looked all over for that pastry, convinced that I’d inadvertently stuffed it in my purse or sat on it, or shoved it in my pocket.
The disappearing pastry confounded me. How had I eaten it and not realized it? Was there an Elvis impersonator lurking around somewhere and he snitched it? It could happen, a full on fiesta, sans mariachis,was going on in the hallway. I went to check on the ward to see if Bill had been wheeled into his room. Nope, back out to the floor, where children ran around playing with toys that might have come from a pinata. No busted pinata bits though. Cans and cans of Orange Fanta, and an elderly woman quietly sobbing in the corner.
I hide in the bathroom. Its quiet and smells like cinnamon. It is possibly the most seasonably festive public restroom I have ever been in. I find an excuse to lurk there for a while, studying the tile, admiring the scent. The soap doesn’t smell festive. It smells like eau d’hospitale, which is unpleasant at the best of times. I poke my head out. Crying woman is being comforted by three women and two men who all look like they might burst into tears at any second. I flee across the floor like its a combat zone, and this time Bill is in his room.
I tell this tale to Kim, (who is the most awesome ICU nurse ever) who tells me about how earlier in the month a Hawaiian family had lost one of their family members and how they were punching walls in their grief. Apparently, they were big Samoan types, whose anguish was taken out in nine separate locations in the walls of the ICU. Huge fists. Police called. Many unsettled patients. Extensive drywall repairs. Every culture has its lamentation rituals, some more dangerous than others.
Bill misses all this as he is William of Borg. He has tubes in his nose, for feeding, tubes in his mouth, for breathing, tubes in places his dignity will not allow me to discuss, and one in his head. He has a bad haircut, and he didn’t have much left to begin with. I suspect the hair to be a lost cause at this point. Oh well, I didn’t marry him for his hair. He’s got a missing section of skull where they removed it to allow his brain to swell. Basically they did a nicer version of trepanning him. He has to be restrained to keep from ripping out all the tubes and wires. I’m sure the tip of his nose probably itches. I rub it for him. He’s out cold.
Flash forward to today. I play music for him because he likes alternative and he woke up a little bit for Siouxie and the Banshees. The doctor checks on him daily. He’s had CT scans with contrast about every three days to make sure the swelling is under control, that his blood pressure isn’t too high, that its all draining properly, and no other clots have decided to lodge elsewhere and fuck up the works. Mother wanted to go see him so I loaded her up in her transport chair and wheeled her in there. Kim told me that one of the bags of medicines they are running through his IV’s cost $900 a bag but they were going to switch him to some combination that worked just as well and would be easier to wean him off of when it came time to remove the breathing tube. I have no idea how many bags of that stuff they pumped through him previously though.
Here’s a thing: My real job isn’t writing. Its teaching. My insurance company went bankrupt so all Teachers in Clark County have this new insurance carrier as of January 1. All of my colleagues are screaming because not only did the premiums jump up considerably, but we’ve been wage frozen since the beginning of the school year. WellHealth, as they are now called, isn’t paying for medications either, so a lot of diabetes meds suddenly became non-formulary as of last night. Fortunately, my husband is insured through his employer. But, the ICU, also known as the Expensive Scare Unit is like a suite at the Wynn but without the in room wet bar. He’s a secondary on my insurance, but we already know WellHealth probably will run screaming from this bill.
When Erica McKenna approached me about setting up a gofundme for Bill, I admit I was reluctant. Bill and I are both from Oklahoma, land of “Pull yourself up by your bootstraps, kid” so neither one of us knows how to ask for help.
I keep flashing on that scene in National Lampoon’s Christmas Vacation where Cousin Eddy and Clark Griswold are discussing whether or not Eddy has anything for his kids for Christmas. If you’ve seen the movie, then you know what I am talking about. Anyway, she offered, and after thinking about it for a while, I agreed. I feel strange about it. I feel grateful that she was willing to set it up for me because I admit I am clueless.
Yes, I have read Amanda Palmer’s book, The Art of Asking. I agree, asking for help is an artform in and of itself. I also know that Erica’s a cosplayer and as I said to her, I am also aware that the cosplay community doesn’t have a whole lot of money. The spare change is always funneled back into fabric, or latex or whatever is needed to continue to create. But, its the same way for us. Bill spends his extra money on lenses or new camera bits. Some of his Christmas presents were things he wanted or needed to continue doing what he loves. He loves to go to the Ren faires, the Comic conventions, the Anime expos, the Pirate Fests, the Highland Games, the Star Trek cons, etc. etc. and take photos of the impressive costumes he’s seen. He’s occasionally shot people in the studio, at The Shark Reef, and other locations around town. He loves to do it. To him, he’s trying to make the shot and put the costumer in the best light (literally) possible. His talent is creating fashion photography…his art and his craft. He loves it. Its his hobby and what consumes him.
He also does it for free. He’s never asked anyone for money. Never even passed the proverbial hat, until now.
Amanda Palmer noted in her book that the art of asking is in seeing the person before you. When people threw money in her hat when she posed as the six foot bride, she gave each person a flower and “saw” them, perhaps in ways they never see themselves.
Through the medium of photography, Bill sees people in many different ways. I offer you a flower. Will you see us? Bill and I will be eternally grateful, if you will.