I think...from my own experiences and the conversations I've had with other terminally ill people...that I have a different view on life/death than others who are not ill.
I don't care what happens to my body after I die...cut it up, eat it, burn it, shit on it, fuck it, do whatever you'd like. It's no matter to me.
I don't fear death, I accept it, I've experienced it, I live it everyday. I have chosen not to be afraid because it's a completely wasteful emotion.
I avoid funerals, because when I go, I don't get sad. I don't cry when I hear of people I loved dying. I don't shed tears during the wrenching ceremonies. Death to me is, just a fact. It just is.
Consequently, when I do attend funeral services, I stay as far away from the crowds as possible, embarrassed by my lack of emotion.
Last night we watched, as a house, a few live autopsy videos, and controversy ensued.
Disrespect, they cried.
Disgusting, was inferred.
I was intrigued and got very very upset with the argument and had to remove myself from it. Who the fuck cares? It's a body, not a person anymore. In the same way a fetus isn't human until it's alive, nor is a human AFTER it's alive.
It's just a body. What the hell do I care what happens to it?
17.1.11
Harder than your average choice.
I am trying. Trying to become a better person/listener/supporter trying not to choose my friends based on whether they can help support me with my medical problems, and trying not to get pissed when I do anyway, and they don't support me.
I'm trying to be okay with not knowing what my future holds, but that's so difficult.
I am trying to make concrete decisions, but I'm finding it hard. I don't know how. I worry about everyone else involved, and I feel selfish for thinking about how it affects me, and choosing what's best for myself, not others.
I am trying, and I am slowly noticing a difference, slowly but surely, I will be better at this.
I'm trying to be okay with not knowing what my future holds, but that's so difficult.
I am trying to make concrete decisions, but I'm finding it hard. I don't know how. I worry about everyone else involved, and I feel selfish for thinking about how it affects me, and choosing what's best for myself, not others.
I am trying, and I am slowly noticing a difference, slowly but surely, I will be better at this.
14.1.11
What I want.
I've been a hard working lady these past few months. Thinking, being introspective. Ryan's out of town for 2 months, and as always when we're apart my mind starts running.
I have been in and out of the hospital 9 times this year. For the same shit every time. This last time I finally gave in and brought my camera, to document what I went through and my surroundings. I was surprised when I found that it made my stay less...lonely. I knew people would see the pictures, comment on them, and know what I was experiencing as though they were there with me. I find it interesting that everyone I know with health problems hides them. For the most part, I do too...a huge majority of the people in my life think I have diabetes and that the pump is insulin. How's that for denial?
I have a new approach.
Tell everyone. Make them uncomfortable, give them too much information, if they don't want to look at the pictures of needles going into my veins, they can turn their fucking heads away. Seriously.
I always worried that sharing information like that would make people baby me. Pity me. I still fear that, but I quelled some of the worries by creating a pseudo personality, one as vibrant as the paragraph above. A woman who isn't self conscious about being perceived as weak/selfish/needy/over-informative. I want to embrace all that is icky about myself. All that may make you cringe.
Also, I found that by viewing my life in the hospital through a lens, I was able to disconnect in a way that wasn't damaging to my mental health. I could step aside and have a new perspective.
I want to do a burlesque show that focuses on people's insecurities, whether that be an "embarrassing" sexual fantasy, or a body issue, disabilities, mental or physical. I think it would be awesome to reclaim those issues and make them sexy. Also...I'm working on an erotic zine.
The end of my rant.
xoxo
I have been in and out of the hospital 9 times this year. For the same shit every time. This last time I finally gave in and brought my camera, to document what I went through and my surroundings. I was surprised when I found that it made my stay less...lonely. I knew people would see the pictures, comment on them, and know what I was experiencing as though they were there with me. I find it interesting that everyone I know with health problems hides them. For the most part, I do too...a huge majority of the people in my life think I have diabetes and that the pump is insulin. How's that for denial?
I have a new approach.
Tell everyone. Make them uncomfortable, give them too much information, if they don't want to look at the pictures of needles going into my veins, they can turn their fucking heads away. Seriously.
I always worried that sharing information like that would make people baby me. Pity me. I still fear that, but I quelled some of the worries by creating a pseudo personality, one as vibrant as the paragraph above. A woman who isn't self conscious about being perceived as weak/selfish/needy/over-informative. I want to embrace all that is icky about myself. All that may make you cringe.
Also, I found that by viewing my life in the hospital through a lens, I was able to disconnect in a way that wasn't damaging to my mental health. I could step aside and have a new perspective.
I want to do a burlesque show that focuses on people's insecurities, whether that be an "embarrassing" sexual fantasy, or a body issue, disabilities, mental or physical. I think it would be awesome to reclaim those issues and make them sexy. Also...I'm working on an erotic zine.
The end of my rant.
xoxo
9.9.10
Not a rave:
A rant:
Last night, I went to the hospital. I have a history of sudden death, as in my heart has suddenly stopped and I've died. This has happened twice in the past. It starts with my heart losing rhythm and then slowing, and then, not being able to return to normal, it gives up. And I'm dead.
Soooo, when my heart slowed suddenly from 122 beats per minute, to 50 beats per minute, I decided I didn't feel like dying alone in my crappy bedroom, so I went to the emergency room.
It was a fucking waste of time. The admitting woman actually had me "hold on" after I told her what I was there for, so she could loudly and obviously finish her gossip session with her co-worker. When I got back to my room, the dumbass ER nurse kept insisting it's "protocol" to put in an IV. No, I have a port, I told her. I won that battle. Next, an idiot med student comes in, doesn't listen to me ("So, you're having chest pain?"..."No"... "So, where exactly does it hurt when you get the chest pain?"). Then the real doctor, who got offended when I said I wanted him to call my doctor in St. Louis, "You know, we have perfectly competent cardiologists here, why don't you want to see them?"...sheesh.
Finally, 3 hours later, the doctor comes back in and says I can go home. There doesn't appear to be anything wrong, and my St.Louis cardiologist would contact me tomorrow.
Well, this has happened now 5 times today. A huge difference from the other times I've had arrhythmias. On the discharge papers it read: If you experience shortness of breath (check), lightheadedness (check), or chest tightness (check) at the same time as the arrhythmia, or if it lasts more than 20 minutes (check) please return to the emergency room promptly.
I had all those things!! What the fuck? Why don't my doctors take me seriously? I know there is something very wrong with my heart! WHAT THE FUCK?
So home I went, and sleep I did not get, scared shitless that I would die in my sleep I sat awake writing letters and listening to music.
When no one from my cardiologist's office called me by 1pm today, I called them. "The nurses are all out of the office at this time, can I take a message?" the receptionist says, and I can't help but flashback to being in the hospital and the transplant nurse telling me that she sometimes ignores calls from annoying people who call in all the time. So I left a message and my number.
Four o'clock rolled around and lo and behold, no phone call.
Apparently, my heart almost stopping on a regular basis isn't cause for concern. Apparently, I'm being overly cautious and sensitive.
Let's not forget that I am on a fucking IV drip at home, giving me an antibiotic that's main side effect is "Muscle Deterioration" well, hmmm, my heart is a fucking muscle! Put two and two together? Maybe it's not such a long shot to at least consider that it could also cause arrhythmias, and to at least feign interest or concern.
Let's not forget that I just got out of the hospital a week ago tomorrow, for a fucking STAPHYLOCOCCUS blood infection! Let's not forget that my roommates are all fucking nasty unhygienic douchbags who can't wash their hands after they wipe shit from their asses, and who can't wash a dish with hot water or antibacterial soap because it's bad for the environment. Who can't fathom with their tiny brains, what it's like to be susceptible to disease and illness. That if I catch what they have, it's 10 times worse, and lasts 10 times longer.
And because of that, I now have the flu on top of everything. Very badly. Fever, muscle aches, runny/stuffy nose, sore throat, headache, the whole nine yards. Thanks, assholes.
I wore a mask into the kitchen earlier, and explained that it was to prevent everyone else from getting sick again, and thus infecting each other over and over. "But I already had it!" one of my roommates exclaimed.
"You can get it again, and besides, I have a resistant strain of whatever this shit is, because I don't have an immune system and..." This is when the person started the microwave and interrupted me to ask if anyone had ever tried the variety of squash she was holding.
I'm feeling super negative right now. Super Duper negative time.
Wah.
Wah.
Wah.
Blah blah my life is poopy sometimes, blah blah blah.
BLERRGGGhhh. ah.
Last night, I went to the hospital. I have a history of sudden death, as in my heart has suddenly stopped and I've died. This has happened twice in the past. It starts with my heart losing rhythm and then slowing, and then, not being able to return to normal, it gives up. And I'm dead.
Soooo, when my heart slowed suddenly from 122 beats per minute, to 50 beats per minute, I decided I didn't feel like dying alone in my crappy bedroom, so I went to the emergency room.
It was a fucking waste of time. The admitting woman actually had me "hold on" after I told her what I was there for, so she could loudly and obviously finish her gossip session with her co-worker. When I got back to my room, the dumbass ER nurse kept insisting it's "protocol" to put in an IV. No, I have a port, I told her. I won that battle. Next, an idiot med student comes in, doesn't listen to me ("So, you're having chest pain?"..."No"... "So, where exactly does it hurt when you get the chest pain?"). Then the real doctor, who got offended when I said I wanted him to call my doctor in St. Louis, "You know, we have perfectly competent cardiologists here, why don't you want to see them?"...sheesh.
Finally, 3 hours later, the doctor comes back in and says I can go home. There doesn't appear to be anything wrong, and my St.Louis cardiologist would contact me tomorrow.
Well, this has happened now 5 times today. A huge difference from the other times I've had arrhythmias. On the discharge papers it read: If you experience shortness of breath (check), lightheadedness (check), or chest tightness (check) at the same time as the arrhythmia, or if it lasts more than 20 minutes (check) please return to the emergency room promptly.
I had all those things!! What the fuck? Why don't my doctors take me seriously? I know there is something very wrong with my heart! WHAT THE FUCK?
So home I went, and sleep I did not get, scared shitless that I would die in my sleep I sat awake writing letters and listening to music.
When no one from my cardiologist's office called me by 1pm today, I called them. "The nurses are all out of the office at this time, can I take a message?" the receptionist says, and I can't help but flashback to being in the hospital and the transplant nurse telling me that she sometimes ignores calls from annoying people who call in all the time. So I left a message and my number.
Four o'clock rolled around and lo and behold, no phone call.
Apparently, my heart almost stopping on a regular basis isn't cause for concern. Apparently, I'm being overly cautious and sensitive.
Let's not forget that I am on a fucking IV drip at home, giving me an antibiotic that's main side effect is "Muscle Deterioration" well, hmmm, my heart is a fucking muscle! Put two and two together? Maybe it's not such a long shot to at least consider that it could also cause arrhythmias, and to at least feign interest or concern.
Let's not forget that I just got out of the hospital a week ago tomorrow, for a fucking STAPHYLOCOCCUS blood infection! Let's not forget that my roommates are all fucking nasty unhygienic douchbags who can't wash their hands after they wipe shit from their asses, and who can't wash a dish with hot water or antibacterial soap because it's bad for the environment. Who can't fathom with their tiny brains, what it's like to be susceptible to disease and illness. That if I catch what they have, it's 10 times worse, and lasts 10 times longer.
And because of that, I now have the flu on top of everything. Very badly. Fever, muscle aches, runny/stuffy nose, sore throat, headache, the whole nine yards. Thanks, assholes.
I wore a mask into the kitchen earlier, and explained that it was to prevent everyone else from getting sick again, and thus infecting each other over and over. "But I already had it!" one of my roommates exclaimed.
"You can get it again, and besides, I have a resistant strain of whatever this shit is, because I don't have an immune system and..." This is when the person started the microwave and interrupted me to ask if anyone had ever tried the variety of squash she was holding.
I'm feeling super negative right now. Super Duper negative time.
Wah.
Wah.
Wah.
Blah blah my life is poopy sometimes, blah blah blah.
BLERRGGGhhh. ah.
31.8.10
Numb
I'm numb to this.
I cried last night. I begged my body to let me go on this trip. I begged it.
It didn't work.
When my fever reached 104.8 around 6 o'clock this morning, I had to quit pretending like it would just go away. I went to the emergency room and soon thereafter was in an ambulance on my (not so) merry way to St.Louis. Again. For the same shit I've been in the hospital for the last 3 months.
I can't stand this shit.
I was going on this 2 week trip so that I could get away. So I could experience something new...which rarely happens at this point in my life.
So I could prove to myself that my doctors don't rule my life. That I have control over my life. That I have free will.
Guess I got taught a lesson, eh?
It's so nauseating, completely devastating, for me to have made this fucking HUGE decision...to take myself off the transplant list during one of the busiest weeks of the year (read: prime time for car accidents and thus organ donors) so that I could do this. This is a decision I've been rolling over in my brain for the whole time I've been on the list, almost 3 years, and it's a decision I felt guilty for, but had committed to completely.
I feel numb because I'm upset, but I can't express it. I'm sad and depressed and utterly deflated on a level so deep that it's not registering. I feel it in the deepest pit of my chest, in the core of my being.
I feel completely defeated.
I feel like I am being punished, but in vain I try to find an answer that doesn't exist, I can never know if that's the case.
This is something other than suicidal. I don't feel like not living anymore, but I don't want to do this shit. I don't want this body. I don't want it.
I wouldn't give it to anyone else...that's how much I hate it. I would never wish it on anyone, ever. I just want to live my life like a normal fucking person. A healthy person who is dumb to the horrors their bodies can wreak. To the loss of control that illness brings. To the inability to control even a SINGLE fucking aspect of your existence.
I want to live in oblivion to heart failure and kidney failure and blood infections and surgery and death and I don't want to be some stealer of organs. I don't want my liveliness to DEPEND on someone else's death.
Shit.
Well...I guess I'll deal with it, because it's better than the alternative, but that's certainly a shitty couple of decisions.
I cried last night. I begged my body to let me go on this trip. I begged it.
It didn't work.
When my fever reached 104.8 around 6 o'clock this morning, I had to quit pretending like it would just go away. I went to the emergency room and soon thereafter was in an ambulance on my (not so) merry way to St.Louis. Again. For the same shit I've been in the hospital for the last 3 months.
I can't stand this shit.
I was going on this 2 week trip so that I could get away. So I could experience something new...which rarely happens at this point in my life.
So I could prove to myself that my doctors don't rule my life. That I have control over my life. That I have free will.
Guess I got taught a lesson, eh?
It's so nauseating, completely devastating, for me to have made this fucking HUGE decision...to take myself off the transplant list during one of the busiest weeks of the year (read: prime time for car accidents and thus organ donors) so that I could do this. This is a decision I've been rolling over in my brain for the whole time I've been on the list, almost 3 years, and it's a decision I felt guilty for, but had committed to completely.
I feel numb because I'm upset, but I can't express it. I'm sad and depressed and utterly deflated on a level so deep that it's not registering. I feel it in the deepest pit of my chest, in the core of my being.
I feel completely defeated.
I feel like I am being punished, but in vain I try to find an answer that doesn't exist, I can never know if that's the case.
This is something other than suicidal. I don't feel like not living anymore, but I don't want to do this shit. I don't want this body. I don't want it.
I wouldn't give it to anyone else...that's how much I hate it. I would never wish it on anyone, ever. I just want to live my life like a normal fucking person. A healthy person who is dumb to the horrors their bodies can wreak. To the loss of control that illness brings. To the inability to control even a SINGLE fucking aspect of your existence.
I want to live in oblivion to heart failure and kidney failure and blood infections and surgery and death and I don't want to be some stealer of organs. I don't want my liveliness to DEPEND on someone else's death.
Shit.
Well...I guess I'll deal with it, because it's better than the alternative, but that's certainly a shitty couple of decisions.
29.8.10
Engulfed, Enclosed, Enveloped, In Rapture.
Sometimes. I feel like...and I'm aware of the relative ridiculousness of this statement, but it's fitting and it makes sense of things I can't make sense of otherwise...
I think part of my soul is bound to a different place.
I've been getting flashbacks again, flashbacks of my dreams.
From long ago.
My eyes glaze over and it's like I'm there. I had the weirdest experience yesterday, trying to write down my dream from the night before, and a part of the dream reminded me of a very odd one from high school.
A dream I wrote down but avoided since. I even folded the page in, so that if I was scrolling through the journal, I wouldn't get sucked into it.
As I was writing about my dream yesterday, I remembered it.
My eyes were fluttering, nothing else on my body moved. I was frozen, my hands still in position on the keyboard (I now keep dream journals on my computer) and I was fighting it. I had tears in my eyes. I didn't want to go there...anywhere but there...but that fucking beach. I tried so hard to snap back into reality, but I just couldn't. After a few futile attempts at bringing my mind back to the present I was there.
The sound of the waves, the smell and taste of salt in the air. The gray sand, and the even grayer skies. The purring of the clouds...like constant thunder. The water in the ocean is gray, too. A slate/gray/black color, and the foam, cream colored.
I stand, facing the water and the infinite skyline.
Behind me, there stands a two-story light gray wall made from over-sized concrete blocks. There are stairs leading up to the wall, and you make a short journey across the top to the stairs leading down to the other side, where a grocery store resides.
I walk, slowly to the water. I simply want to feel the waves cover my feet. I relish the first wave, my eyes closed. I open my eyes to watch the second one. I spot something small and black in the water. The waves brought it near my feet, only a few steps farther forward...
I see a dead child. An infant, bloated, green and gray and red and rotting. It's mouth is horrifyingly twisted, into an adult expression of extreme agony.
I scream, but per usual in my dream world, nothing comes out. I weep as I move the baby with a stick out of the wave's arms.
I have to go all the way to the grocery store to get a black trash bag. I anticipate it won't be, but when I get back to the beach, the dead baby is still there.
I turn the bag inside out and grab the baby, then flip it back right side out, so I avoid touching its peeling skin. It's rashy, splotchy, flapping-in-the-breeze chunks of flesh.
I run to the grocery store, and for some reason I have to put the bag through the checkout, maybe to see what I have to do with it. As it's going on the conveyor belt, it starts moving. The bag is rustling, and people start looking at me funny. Suddenly the most horrifying, loud, piercing, tormented, miserable, formidable, spine-tingling, hair-raising scream I've ever witnessed, came creeping out of the bag. It slapped me in the face. My ears fucking hurt, they start bleeding, I can feel it running down my neck. The scream stops. I stare at the bag, and no one else is left in the store. The bag moves again, and out steps the decaying child. It looks at me, one eyeball flopping about. It slowly raises it's hand and points at me. I scream, and a bag boy suddenly appears and tackles it.
I remember, suddenly, that this is my child. I was pregnant, I was with child, but didn't want it anymore. I took it from my womb and threw it into the ocean. I forgot about it, blocked it out of my mind.
I am furious at this...thing. I remember, and all the hate and resentment come rushing back in a flood of emotions. I grab something hard...perhaps a broom. I start beating the sack on the floor. The bag boy joins in, kicking and punching the bag. The squishing sounds are sickening. I finish by grabbing the bag and slamming it over and over again into the linoleum floor. The boy grabs my arms and leads me to the dumpster outside with the bag. I toss it in. I feel better.
But I'll never forget the way that infant looked at me, and the way it accused me of an unmentionable crime I'd forgotten.
And so...this is why I think I'm torn between two...maybe more...places. These dreams are like nothing I've read about. They have nothing to do with my real life. Oh, sure I have dreams that I can easily identify, like Heath Ledger walking by in a towl...classic. But a rotting infant and the ocean? The scream?
I've had dreams in which I get some kind of wound, someone touches me, once I got my wrist pierced...and I can feel it. Completely and totally. I feel the pain as if it's completely real and happening.
What's so boggling to me, is why it's crossing over. Is it possible for your dreams to pull your mind into them? I'm awake, I'm doing real-world stuff, like walking, or painting, or typing...and suddenly I'm there, I'm not asleep. I don't understand.
But what's so scary about the whole thing is that I don't want it to stop. I feel like I'm a part of something bigger than me. Infinite and eternal. I feel like I am a part of something ancient, and that the more I get involved in it, the more I can learn. The more I can understand. I don't want it to stop.
I used to want it to...because I thought something was wrong with me. Voices started talking to me in the dreams. I had many dreams about various apocalypses. I had prophetic dreams (you don't have to believe me), where what I dreamed, happened later.
When I was approximately 7 years old, my mother used to stop at a store in Lincoln, Ne called "the way home"...if I remember correctly. It was a native-american shaman inspired store. She would stop to get her tarot read, or her fortune told by the in house psychic. There was an old native american man who would stand at this glass dome covering a miniature weathervane, we're talking the size of my pinkie. Once, while I waited patiently for my mother, I asked the man what he was doing. He told me he was moving the weathervane with his mind, strengthening it. I asked him how, and over the next few visits, he taught me to prepare my mind using exercises, like moving my hands until I felt a sponge-like substance between them. After I learning to tune into my mind, I tried controlling the weathervane, and it bent to my will. I could turn it left or right only, of course. No matrix bendy shit. But it was a powerful experience.
I know it must sound like total bullshit. But I assure you, these are real experiences.
There was a time once, sitting in art class, when suddenly I looked up from my table and said "the phone's going to ring"...my friend at the time looked at me, and the phone rang. After a while there was a group of people around the table, freaked out, skeptical. I predicted 4 phone calls and 3 songs on the radio, then it was gone. It was very weird.
I used to think I could detect Auras, before I knew what Aura's were. I could...feel...not necessarily see...a certain energy around particular people I encountered. I associated those energies with colors. I eventually started to feel crazy, and only told a few people, who also made me feel crazy. Recently, I met a woman who is now a dear friend. I can detect the strangest Aura I've ever been around. It's invisible. She's like a piece of lace. Her connection to this earth is thin, wispy, and all around unattached. Perhaps attached like a spiderweb to a wall.
It's made me start thinking about the Aura detection again. I had pretty much put all that behind me. I had stopped tuning into energies.
It's all so big. So much bigger than me. But I think I'm ready to learn more.
I'm skeptical...I mean, maybe I'm really just totally insane. Maybe I have schizophrenia (it runs in my family) or something. Or maybe, I'm not completely of this world. I like that option better.
Fin.
26.8.10
The morning After...
Whew...it's been a long time. 3 months almost. This year has gone by incredibly fast. Ironically, the reason I haven't been posting is related to my health, but that's another story completely.
So here goes...
I woke up, back in the ICU, only this time a different room, smaller.
The first three things I did with my new life were: feel the extreme urge to piss, feel extreme anger at the surgeon for lying to me about the anesthesia, and feel thirstier than a deserted traveler in the desert after 4 weeks of walking and maybe this person ate a bit of sand, too. Also, dirt, and cactus barbs for good measure.
I don't remember feeling any pain. I wasn't breathing on my own, and what a peculiar feeling it is to have your chest moving up and down with the expansion of your lungs, and to not be doing it yourself. The machine made breathing noises, even.
I couldn't see very well those first few hours after I woke up. I slipped in and out of consciousness, and it's like a dream even now. The sound of suction as my family slurped the saliva I wasn't able to swallow out of my face with a spit vacuum like they use in dentists offices.
My mom's face above me, my dad and amy and my sister, nurses, doctors, everyone looking down on me as if I weren't quite part of their world yet, but definitely not part of the world I'd known before.
There was a small ball in my hand, with a button, and the ball was secured to my hand with tape and fasteners. Michelle, my nurse explained to me during one of my bouts of alertness, that if I felt pain I only had to press the button, and a dose of pain medicine would be delivered to me. I did it before she stopped talking, and a satisfying beeping noise was predecessor to my passing out.
I pressed that button a shit ton those first 24 hours. It was only later that I learned it only delivered pain medicine in controlled doses over several hours, and that the button was shown to increase recovery time by empowering the patient.
Interesting.
What must have been, I would guess, about the 23rd hour out of surgery, it was time to take out the breathing tube. "This isn't going to feel very good, but it's a positive step forward in your recovery. We are going to count to three and on three you have to cough as hard as you can, and we'll pull out the tube. You'll feel a lot of pressure, but it's okay."
everyone knows that "lot of pressure" means pain.
And it was painful.
On three, I coughed as hard as I could, which was more akin to a mouse whisper than a "cough". They tugged the tube out hard and fast, ripping the sides of my esophagus. I could taste the blood in my throat, and I screamed my newborn scream, loud, long, satisfyingly intense and horrifyingly real. The only thing missing, really, was the doctor slapping my ass and handing me to my mommy.
But, I could breathe. On my own, laying down, no puking involved. Without the loud noises the machine made while breathing for me, I was able to hear the slow, steady beating of my new heart. The healthy and strong way it moved my body while it beat, ready to go, ready to support my youthful endeavors. It got a second chance, too, you know. It got scared shitless when it thought it might die in that girl, and now here it was, being alive, eager to prove it's worthiness and dedication.
"I want to talk to the surgeon"...those were my first words.
The more I woke up, the less pain medicine they allowed me, the more real my experience became. I was so fucking thirsty. Worse than I could ever possibly explain. It had been over 48 hours since my last drink, with the immunosuppressants the night of my surgery admission. I was hydrated from IV drips, but my mouth was desperate and my lips were chapped and cracking.
I begged, cried, squealed for water. "Please, give me water" but all that was allowed were these tiny little sponges, flavored like cotton candy and bubblegum. I think there was a nasty cherry flavored one, too. They were only as big as a nickel,
and held about 6 drips from a faucet of water. It was worse than just being thirsty. It was torturous.
I convinced my Grandma (rest her soul), in my raspy broken voice, to break the rules when no one else was around. To refill the sponge over and over, and after several refills, it resembled something like a drink of liquid.
It was time to sit up now. Maybe halfway through the second day in ICU. The bed was slowly raised to allow me to sit up. Excruciatingly painful, it felt as if my insides would burst through my chest.
But I was sitting up, and after a bit more pain medicine, I was ready to see Dr. Behrendt, my surgeon.
Here he is:
And while we're at it...my transplant doctor who took care of me before and after my transplant until 2004, Dr. Edens:
Dr. Behrendt walked into the room with a swarm of busy bumble bee students. He was very jolly acting, excited to see my remarkable progress. He just thought I wanted to thank him. His face was very...irritated, when I accused him. I said in these words, or close to them "I want to tell you something. You lied to me. I'm very upset with you, you told me you would let me know when you were putting me to sleep, and I don't remember that happening. I remember them telling me they were putting oxygen on my face, and then I woke up here. I could have died, and the last words I ever would have heard, would have been a lie."
He was completely dumbfounded. He apologized, and I was silent as he awkwardly backed out of the room, with a look mixed with annoyance, shame, and frustration. Mostly annoyance though...because he probably thought I was an ungrateful little bitch.
Which I realize now, I kind of was. My heart didn't magically insert itself into my chest, this man, this stranger had taken 7-8 hours of his time to calmly, patiently, and lovingly (seriously, look at the amazing job he did on my scar, or lack thereof) make my life better. I didn't even say thank you.
I also realize now that I could have fallen asleep on my own from the pre-sedative, or I could just not remember them telling me, or might not have heard the words clearly through all my anxiety and crying. I feel kind of bad. Maybe I should write him a letter.
Anyway. I was sitting up. Next hurdle: learning to walk. Next time, on day's of my life.
<3
So here goes...
I woke up, back in the ICU, only this time a different room, smaller.
The first three things I did with my new life were: feel the extreme urge to piss, feel extreme anger at the surgeon for lying to me about the anesthesia, and feel thirstier than a deserted traveler in the desert after 4 weeks of walking and maybe this person ate a bit of sand, too. Also, dirt, and cactus barbs for good measure.
I don't remember feeling any pain. I wasn't breathing on my own, and what a peculiar feeling it is to have your chest moving up and down with the expansion of your lungs, and to not be doing it yourself. The machine made breathing noises, even.
I couldn't see very well those first few hours after I woke up. I slipped in and out of consciousness, and it's like a dream even now. The sound of suction as my family slurped the saliva I wasn't able to swallow out of my face with a spit vacuum like they use in dentists offices.
My mom's face above me, my dad and amy and my sister, nurses, doctors, everyone looking down on me as if I weren't quite part of their world yet, but definitely not part of the world I'd known before.
There was a small ball in my hand, with a button, and the ball was secured to my hand with tape and fasteners. Michelle, my nurse explained to me during one of my bouts of alertness, that if I felt pain I only had to press the button, and a dose of pain medicine would be delivered to me. I did it before she stopped talking, and a satisfying beeping noise was predecessor to my passing out.
I pressed that button a shit ton those first 24 hours. It was only later that I learned it only delivered pain medicine in controlled doses over several hours, and that the button was shown to increase recovery time by empowering the patient.
Interesting.
What must have been, I would guess, about the 23rd hour out of surgery, it was time to take out the breathing tube. "This isn't going to feel very good, but it's a positive step forward in your recovery. We are going to count to three and on three you have to cough as hard as you can, and we'll pull out the tube. You'll feel a lot of pressure, but it's okay."
everyone knows that "lot of pressure" means pain.
And it was painful.
On three, I coughed as hard as I could, which was more akin to a mouse whisper than a "cough". They tugged the tube out hard and fast, ripping the sides of my esophagus. I could taste the blood in my throat, and I screamed my newborn scream, loud, long, satisfyingly intense and horrifyingly real. The only thing missing, really, was the doctor slapping my ass and handing me to my mommy.
But, I could breathe. On my own, laying down, no puking involved. Without the loud noises the machine made while breathing for me, I was able to hear the slow, steady beating of my new heart. The healthy and strong way it moved my body while it beat, ready to go, ready to support my youthful endeavors. It got a second chance, too, you know. It got scared shitless when it thought it might die in that girl, and now here it was, being alive, eager to prove it's worthiness and dedication.
"I want to talk to the surgeon"...those were my first words.
The more I woke up, the less pain medicine they allowed me, the more real my experience became. I was so fucking thirsty. Worse than I could ever possibly explain. It had been over 48 hours since my last drink, with the immunosuppressants the night of my surgery admission. I was hydrated from IV drips, but my mouth was desperate and my lips were chapped and cracking.
I begged, cried, squealed for water. "Please, give me water" but all that was allowed were these tiny little sponges, flavored like cotton candy and bubblegum. I think there was a nasty cherry flavored one, too. They were only as big as a nickel,
and held about 6 drips from a faucet of water. It was worse than just being thirsty. It was torturous.
I convinced my Grandma (rest her soul), in my raspy broken voice, to break the rules when no one else was around. To refill the sponge over and over, and after several refills, it resembled something like a drink of liquid.
It was time to sit up now. Maybe halfway through the second day in ICU. The bed was slowly raised to allow me to sit up. Excruciatingly painful, it felt as if my insides would burst through my chest.
But I was sitting up, and after a bit more pain medicine, I was ready to see Dr. Behrendt, my surgeon.
Here he is:
And while we're at it...my transplant doctor who took care of me before and after my transplant until 2004, Dr. Edens:
Dr. Behrendt walked into the room with a swarm of busy bumble bee students. He was very jolly acting, excited to see my remarkable progress. He just thought I wanted to thank him. His face was very...irritated, when I accused him. I said in these words, or close to them "I want to tell you something. You lied to me. I'm very upset with you, you told me you would let me know when you were putting me to sleep, and I don't remember that happening. I remember them telling me they were putting oxygen on my face, and then I woke up here. I could have died, and the last words I ever would have heard, would have been a lie."
He was completely dumbfounded. He apologized, and I was silent as he awkwardly backed out of the room, with a look mixed with annoyance, shame, and frustration. Mostly annoyance though...because he probably thought I was an ungrateful little bitch.
Which I realize now, I kind of was. My heart didn't magically insert itself into my chest, this man, this stranger had taken 7-8 hours of his time to calmly, patiently, and lovingly (seriously, look at the amazing job he did on my scar, or lack thereof) make my life better. I didn't even say thank you.
I also realize now that I could have fallen asleep on my own from the pre-sedative, or I could just not remember them telling me, or might not have heard the words clearly through all my anxiety and crying. I feel kind of bad. Maybe I should write him a letter.
Anyway. I was sitting up. Next hurdle: learning to walk. Next time, on day's of my life.
<3
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