Category: hospitals

When Indifference is a Pre-Existing Condition, We All Lose

It’s difficult to adequately explain what it feels like to have a serious degenerative illness and have to listen to the barrage of ignorant or callous (and all too often, both) political rhetoric surrounding healthcare legislation. Like most people, I’m angry about the constant disingenuous spin on the health of the ACA and the manufactured need to repeal it rather than attempt a bipartisan effort to improve it. But the thing that bothers me the most is a big part of why all of this is happening in the first place, lack of empathy and the seemingly growing number of people who are unable to show compassion for people who’s life experience is different from their own. Instead of trying to understand each other better, it’s easier to manufacture a narrative that justifies discriminatory behavior. If you label groups of people as other-than-you, it’s easier to dismiss them. “Twenty four million people will lose coverage under this plan? Well, then they should stop being poor. They must be careless with their money, why should I have to contribute to their well being?” “Lifetime coverage limits cut off your kid’s chemo treatment? Where’s your life savings? Why don’t you sell your house? Start a GoFundMe page. It’s your kid, figure it out.” Basically, poor people need to stop being poor, and sick people should’ve planned better.

Oh. Ok.

All of this other-ing and distancing of oneself from entire groups of people makes it easier to be flippant when discussing ideas that benefit one group to the other’s detriment. For instance, throughout all this debate around healthcare, people who spend a lot of time justifying legislation that would allow insurers to discriminate based on a patient’s medical history often talk about “the sick” as if it’s a term for some hypothetical life experience of a nameless, faceless group entity. I get a similar impression when people throw around terms like “pre-existing conditions”, “lifetime coverage limits” and “high-risk pools” as if these details aren’t really a big fucking deal. I realize that, for generally healthy politicians and pundits, these terms are just talking points. They don’t seem to want to acknowledge the real-life (and death) gravity of their words as they dance around the consequences of proposed legislation that would remove the very consumer protections that people’s lives depend on, that my life depends on. Perhaps it’s because they’ve had the good fortune to be generally healthy, or perhaps they just aren’t capable of taking an empathetic stance on issues that don’t directly affect them. (Or perhaps they don’t give a shit because they’ve got a tax break to deliver.)

I guess what I want to say, at the heart of it, is this:

I’m not “other”.
I’m not a nameless, faceless, abstract entity.
I’m not broken, I am disabled due to disease, but that is just one small part of all the things that I am.
I’m not lazy or irresponsible and I didn’t do anything to deserve what happened to me.

My name is Sara.
I have silver hair and a crooked smile.
I’m a wife, a mother, a daughter, a sister, an aunt, and a friend.
I have my grandmother’s uncontainable cackle-laugh.
I’m a listener and a storyteller and a painter and a woman and a human.
I might even be a lot like you.
And I’m just trying to make it to tomorrow.

Thanks for reading.
Go do something good today.
xo

 

Hospital prison log in review: A week in the slammer.

I spent the past week trapped in a goddamned hospital room. Below you’ll find a collection of my daily updates and random musings from my incarceration. It was highly irritating. It’s ok if you think I’m a hero. I probably am.

My "inpatient irritated" face. Goddammit.

My “inpatient irritated” face. Goddammit.

Enjoy, fuckers.

St. Luke’s Hospital Prison Log
Day One:

March 5, 2014

My captors have succeeded in confining me to a bed in the middle of my cell. I’m under 24 hour surveillance. The food served to us is clearly meant to induce gen pop starvation, rendering inmates too weak to revolt.

I’m using IV needles to scratch out a prison tat. Gonna make some hooch by fermenting SunnyD and dinner rolls in a bed pan.

The smuggling in of any/all contraband is encouraged.

For now, I’ll be singing old spirituals and dragging my metal cup across the cell bars.

Goddammit.

March 5, 2014

Things that are NOT fucking funny. Apparently.

1.) Penciling in “Beer” on the drink list on the dinner menu in the hospital.

March 5, 2014

A nurse (not mine) just walked into the room to give me a cup of water and to turn out the light. I saw her face for half a second, then she turned and the lights went out.

For no fucking reason, and without even thinking, I blurted out, “Are you a twin?”

She spun around, looked at me quizzically and replied, “Yes.”

I don’t know what shocked me most, that I actually fucking asked that, or that she said yes.

We’ve never met, nor do either of us find the other familiar. We ran through lists of possible connections, all the way back to forever ago. She’s much (much) younger than me, we come from different cities, and she hasn’t worked here long.

What the fuck just happened?

And how did I become the fucking nut-job lady on the neuro floor who asks complete strangers if they are a twin, anyway?

I’ve got to get that beer back on the menu.

STAT.

St. Luke’s Hospital Prison Log
Day Two:

March 6, 2014

There is an alarm on my bed. It’s a “She’s trying to escape!” type of alarm.

I have voiced my indignation via written messages that I have held up to the video camera (aka The Eye in the Sky) that my captors use to watch my every move.

THERE IS A GOTDAMNED ALARM ON MY BED.

It’s starting to smell in here.

March 6, 2014

Mysterious package arrived at the prison today from an anonymous friendly on the outside.

In it were the closest things to my favorite kicks that I can get while incarcerated, along with enough Gummy Bears to pay off the guards for their continued cooperation in this smuggling operation.

Kicks

Sweet kicks.

Great job gang. Be safe out there.

March 6, 2014

Trying to remember if, last night, I was just imagining how funny it would be if I picked my nose on camera, or if I actually picked my nose on camera.

Both scenarios are equally plausible.

Shit.

Unrelated, after listening to his voice this afternoon, if the new patient in the room across the hall doesn’t end up looking exactly like Lou Ferrigno, the world as I know it is a lie

Update on Lou Ferrigno:

Lou missed the cut off for ordering a dinner meal. HULK SMASH.

His wife calls all the staff members “girl”. As in, “That was a good idea, girl.” or “Hey. Girl, can you get me a new chair?” (I should clarify that she doesn’t say it in a familiar, friendly way. At all.)

This just in!!!! “Wife” is actually Lou’s mom.

Further update on Lou Ferrigno:

Lou is talking to family member (maybe wifey?) on SPEAKER PHONE, and while talking about his tumor, his wife busted into Arnold Swarzenegger voice with, “It’s not a too-ma.” He replied in Arnold voice, in turn.

My mind just exploded.

St. Luke’s Hospital Prison Log
Day 3:

March 7, 2014

I’m pretty sure I’ve figured out which of the assistant guards flagged me as a flight risk. He’s a young man, and clearly dislikes me. Even so, I can tell he’s also a little bit afraid of me. What a brave boy. I’m sure I can bring him over to my side through the magic (and friendship) of My Little Ponies. I’m confident that this is the way to his little Brony heart, as he’s unwittingly indicated by his peculiar behavior, lack of eye contact, and choice of footwear.

No man can eat 50 eggs.

Befriending the narc on cell block N(euro).

Befriending the narc on cell block N(euro).

March 7, 2014

This little piece of awesome made it through the prison mail room, today!

Good to know that people on the outside still get you…

True story.

True story.

Godspeed, all my freedom fighters.

From the hubby via Facebook (March 7, 2014):

Two full days alone with the natives and still no sign of their leader. So far, they have not turned against me. Sometimes I think they think the disappearance of their leader is because of me. There have been a few moments when things got a bit dicey, but we were able to strike a deal and keep peace between us.
I remain positive that their leader will appear soon. Until then I keep my guard up in case of an uprising.

Aaaanooother Update on Inmate #26627 Lou Ferigno:

One hour post-extubation Lou Ferigno turned into a 3 hour post-extubation John Goodman, who turned into 12 hour post-extubation some dude who made 3 open-door-speaker-phone conference calls all before 9:00am today. Because, he may not be Lou Ferigno, or John Goodman, but goddammit, he must be more important than any of us assholes.

Also, one of the more confused (and very combatant) inmates just started barking. I think, perhaps the line between the Neuro cell block and the Psych cell block is a fine one.

A very, very fine one.

Ruff.

St. Luke’s Hospital Prison Log
Day Four:

March 8, 2014

Forgetting Mrs. Santiago’s medications is the new black.

orangeblack

St. Luke’s Hospital Prison Log
Day Five:

March 9, 2014

Things got a little dicey on N(euro) block this afternoon. One of the inmates was screaming that one of the guards was “running her mouth when she shouldn’t be”. That’s about all I know. I was trying to dip, but that shit happened while *my* cell was on lock down, because none of your goddamned business.

Otherwise quiet Sunday on the block. Made eyeliner out of deodorant and pencil lead. One more jelly packet from the mess hall, and I’ll have enough to make some hair gel.

Sonofa.

March 10, 2014

Thanks to all of my pals for making my time on the inside much easier. You turkeys crack me up. Best care packages, and best looking mules in five counties. Bet.

March 10, 2014

THIS. I’m calling this infusion “PAROLE”. I’m about to get sprung from this joint, y’all. *does the Cabbage Patch, Running Man, Coffee Grinder to end pose*

I'm out, bitches.

I’m out, bitches.

St. Luke’s Hospital Prison Log
Day six (and final) entry:

March 10, 2014

Like a fart in the wind.

Like a fart in the wind.

March 10, 2014

Okay, this is just the sweetest photo of my daughter. (Taken from my bed.)

Perched in my window.

Perched in my window.

March 11, 2014

I’m using the bathroom without being watched by a nurse, for fear that I might have a seizure and fall.

This is some exciting shit.

Neuro Floor Shenanigans and Some Swear Words

WARNING: This post contains a high level of sarcasm, thinly veiled (or not at all) discontent, and swear words. Even my patience wears thin. While I realize that I am very fortunate, and remain a grateful patient… Well, it wouldn’t be me if I didn’t give you guys the low down of the most recent hospital shenanigans. Good god it sucked. I high-tailed it out of there as soon as I could. Read at your own risk. Or don’t. Whatever. It’s cool.

Musings from the Neuro Floor…

  • Let’s play “How many times do we have to stick Sara with the 18 gauge needle before we can start an IV?” Go! *face palm*
  • That’s right, genius. I’m still awake. Better ratchet up that anesthesia cocktail, it takes a lot to put this old girl down. (Sucka.)
  • I heart TED stockings. I heart them so very much.
  • Immediately after recovery, I am wheeled to my room. Our room. Me and my roommate. My “roomie”. I have a roommate. I was not aware that I would have to share a room, or for-the-love-of-jebus, a toilet, in a hospital, can this even be legal anymore?¹ *sobs*  She likes to watch crap daytime TV while talking on the phone. She also has a husband. He likes to smile and wave at me. All I have is the mother of all headaches. I request to be moved to the nearest supply closet.
  • I, for one, really enjoy the 4:00 am blood draws. I like to pretend it’s my pre-dawn acupuncture. Really, don’t just draw the blood and leave. Flip on the lights! Stay! Tell me about some random shit your husband did at the bar and how you are raising your grandkid. It’s all really interesting and awesome. And also, I like your homemade tattoos between your thumb and forefinger. Looking good. Looking real, real good. *finger guns*
  • Ladies, nurses, CNA’s, have you ever had a spinal headache?  These are hospital beds, not bumper cars, please make a note of it.
  • Dear Roommate-That-I-Hate-For-No-Reason-Other-Than-You-Happen-To-Be-There, I am happy that you are ambulatory. Yes, I see you have a walker there. If you bang it into my bed one more time, I will have someone hide it…very very far away from this room.
  • O HAI morphine! (We bring you Loooooooooove.)
  • Did I mention that I had a roommate?
  • It’s really no problem, I carry large bags of my own urine with me on a regular basis.
  • Let’s try repetition-for-learning. Repeat after me: “I will not forget Mrs. Santiago’s morning meds. I will not forget Mrs. Santiago’s morning meds. I will not…”
  • Go ahead, trip on that foley catheter one more time, just one…more…fucking…time.
  • No, no, it’s fiiiiiiine, just the other day I was saying that I should really look into one of those bladder infections. I mean, who really secures foley catheters properly these days anyway? Pfft!
  • There is a difference between refusing to eat and refusing to eat THAT shit.
  • NOBODY EVER SAID A GOTDAMN THING ABOUT A ROOMMATE. (Fucking shoot me.)
  • Thank you, transport person, for comparing the pain from your liposuction two weeks ago to my recent craniotomy-cerebral tonsillectomy-laminectomy-duraplasty and subsequent laminectomy (that’s right, another one) and spinal cord detethering procedures. Yes, yes, your boobs and belly look great.  Oh and hey, that was awesome, in the elevator, when you started digging through my hair with your press-ons, asking what all the red stuff was and “what the hell did they do?” to me. You are one terrific asshole, and I will miss you most of all.

Later Gators.

.

.

.

Footnotes:

¹Predictably, someone is going to get all riled up because I’m bitching about sharing a toilet when others “don’t have access to healthcare” at the level that I do. Listen up, Jack, because I’m going to share something with you. I have paid a shit-ton of money this year in medical expenses. We have had to prioritize our household expenses and give up certain things so that we could afford this. Based on what I have already shelled out, not only should I get my own fucking toilet, but it should be made of gold, feel like silk, and wipe my ass for me when I’m done.