Originally posted 2016-12-02 12:00:10.
Dear future self,
No. This is not just for me but for the world. For everyone to read. Not just the medical journal and the CNN special. Or even some random posting on the latest social media. This is what it is like on the other side. On the other side of “Never tested on humans.” On the other side of death. On the other side of new beginnings.
To anyone that will listen:
Pituitary Recalibration “Never tested on humans”
Cerebral Realignment Surgery “Never tested on humans”
The words swirled around my brain. I knew what the words meant apart and alone but together it was a jumbled mess. Let’s break it down:
Never or not ever.
Tested meaning the trial of the quality of something.
On. This one is easy: engaged in or involved with
Humans . People. Me. Her. Clover.
“Who was it tested on?” No one. “What was it tested on?” Animals and simulations. “Simulations?” Computer programs used to test procedures before they are done on animals and humans. “How many simulations?” About 500. “How many animals?” 7. “How many have lived in the simulations?” 30% “How many of the animals have lived?” None. “Is this the only way?” Yes. “Will it work?” I don’t know.
This was not my call. None of this was my call. Clover’s body, Clover’s call. She was the only one that could make this decision and I did not want her making it for me or for anyone else. She needed to make it for herself. And I would support her every step of the way even if…
“Never tested on humans.”
I knew she would say yes. She was too young to make this kind of decision. What do you know about the world at 11?What do you know about healthcare and statically probabilities? I am now 17 and I think I have no clue yet either. Mother called and asked what was going on but brushed off the decision as if it was a pair of shoes. Father called later and talked to Clover. She was crying after but I didn’t want to know. That was between the two of them and I hoped it was something special.
“Never tested on humans.”
The night before the decision she was weeping in her bed. I could hear she shifting around and trying to get comfortable. Nothing was working. Clover was getting frustrated and began to yell at herself , at her poor broken body. I had to help her get to sleep to help her make the right decision of sound mind, not just the musings of a sleep deprived child. I crawled into bed with her and wrapped her up tight. Ever since the Super Hoodie it was her favorite way to get comfortable and to sleep. “Bug, shhhhhhhh”, I whispered and we talked for awhile and finally I was able to get her to sleep.
But I didn’t sleep. Not right away. Statistics danced in my head. 5% chance of success. 67% chance of heart attack. 87% chance of seizure. 54% chance of permanent brain damage. This could be it for her. But without the surgery she would die. It might be a few months but it would not be more than a year they predicted. This was a gamble. “Never tested on humans.”
I Googled. I know that I shouldn’t have but I did. This surgery did not exist for humans but it was there on animals and organizations like PETA had leaked these obscure surgical videos taken with shaky cameras. I expected mice but then when I saw the monkeys and gorillas in the videos quickly realized that this was something that would be too hard to perform on something so small. Strapped face-down on to tables, these animals were opened up. Their skulls were opened and their brains exposed. Their spinal cords were on display. Blood, there was so much blood in these scenes but I watched every video that I could find. I wanted to know what would happen. Every animal died. Every single one of them suffered and cried the whole time. Their bodies were paralyzed so that they could not move, but they felt the pain. They knew they were strapped to a table.
I felt the hot tears stream down my face, but this is what happened right? Animals were able to make these sacrifices to advance human medicine. They would never feel the pain. That is what we were told. But that was a lie. I could see it in the eyes of the poor monkeys as the got close up shots of their faces. I had to get this image out of my head. They would give her something for the pain. She would not suffer like these poor creatures.
There were also videos of the simulations posted by android rights groups, places like HFAR (Humans for Android Rights) and AAPT (Androids are People Too). From talking with the doctor I did not realize that these simulations were androids as I believed that they were just computer simulations so these pages shocked me. They looked like humans, acted like humans, and watching them die in the videos was more real than I was comfortable with. Like the animals, the androids were strapped face-down to the tables. I could see the surgeon’s work expertly on them, but this took teams of doctors and the videos, though sped up or edited for time, would show time lapses of days. Not hours, but days. The longest seemed to last about 80 hours and the android ended up dying.
How does an android die you might ask. I was wondering the same thing. But these androids were created for a specific purpose. They were made to be like Clover, well not her exactly, but to have the same disease as her. Most of them were small and child like but there were a few adult bodies. When the surgery failed or their android bodies that were like humans could no longer take it, they gave up and died. There was no more brain functioning. The HFAR group concluded that the androids were suffering and were dying. There were other reports that came out stating that although they were ceasing brain function, there was no real life there in the first place and therefore were not dying but being repurposed. Did we know if they could feel?
Watching the videos over and over I looked in the eyes of the androids and something was there. A spark or a tear on one or two of them but they were never looking back at me with Barbie Doll eyes. It was sad as I watched them unwind and fall apart right in front of my eyes, but every so often there was a success. “Thirty percent of the time, this worked on simulations.” The numbers went over and over in my brain. Thirty Percent. Thirty Percent. Thirty percent of the time it worked, the androids would get up and they would walk and run and play and be free. Clover could be like that again. She could be free from the shell that was holding her back. If this worked everything would change. Years of therapy and work would make it all possible. But the first step was this surgery.
“Never tested on humans.”
I wanted to know exactly what they would be doing. I wanted to be able to walk through the process and the surgery step by step. Watching the videos, I began to take notes. I was able to see all the steps they were going to take and I would memorize them so that when the surgery was happening I would be able to count the steps in my head and move with the surgeons. There were three hundred and fourty seven steps to this process.
Step 1 – The patient is prepped for surgery with light anesthesia rendering them unable to move but conscious.
Step 2 – The patient is placed face-down on the table and strapped down to the table on the arms, chest, and legs. It should be ensured that if the patient’s anesthesia wears off, these would be the only way to stop the patient from moving and causing death.
Step 55 – The skull is cracked open and a large piece is removed and placed to the side to be reattached later.
Step 79 – The pituitary is flushed with 500 cc’s of Nepofedrone
Step 80 – The pituitary is injected with 2 cc’s of Farthican XY
Step 198 – The spine is exposed by a single incision down the back
Step 199 – The spine is flushed with fluid and then is suctioned off leaving the spine dry and clean
Step 347 – The patient is given fluids and sent back to recovery.
I memorized each step. Counting it off in my head. Over three weeks I studied, even though I was not 100% sure that she would be going through with the surgery. I read each step in my journal every night as I listened to her toss and turn. I watched every video I could find of successes and failures with the surgery. Looking for when he doctor would make a mistake, watching for those little movements, the slips, the nicks on the veins, when the defib happened, what made the patient die.
The surgeon that would be part of Clovers surgery was in a few of the videos. Once she was just watching and the other times she was performing the duties. Of the five other videoss he was in, the patient died once. That is the video I watched the most. It was the one that mattered the most. I had to find the mistake.
Surgery notes were posted with the videos and i was able to see where the doctor felt he messed up. What he said happened was so minor, so insignificant that I had no idea how it would even have caused the death. I was not a doctor, I would never be a doctor, but I was able to solve problems and this was one that I could not solve. I would need to go to the source.
With all my notes in place I video called Clover’s doctor, Doctor Mallin.
“Good Morning Trillium. Is everything ok with Clover?”
“Hello Dr. Mallin, yes Clover is just fine. I just wanted to talk with you about the surgery.” Pulling out my folder, I placed my notes in front of me and opened my journal to the pages.
“It looks like you have been doing your research.” Dr. Mallin smiled.
“I have ma’am and I just wanted to say that I have watched you in a few, well all of your available videos, and I had a few questions.”
“Go on Trillium, I would be happy to answer any and all questions that you might have. This is something that is very important and since it has never been tested on a human before, we are all in for a bunch of questions and concerns.” Her face was serious and confident which is what you want to see in a doctor, but it really put me on edge. I felt small and insignificant in the face of all her greatness.
“In the first video, I watched the patient lived. The surgery was beautiful and flawless. Breathtaking. In fact, all of the videos that I could find were flawless, except one. With the third surgery, something happened.” I paused, getting my wits about me.
“Yes, that simulation was, tragic.” The confidence faded a bit and was replaced with what, I really couldn’t tell. Regret? Remorse?
“It was. Everything seemed to be going really well at first. You were about 40 hours into the procedure when it happened. The video is not at the right angle so it is hard to see what happened, but in your notes you stated ‘body tensed, pt reaction, pituitary failure.'” Did I see her eyes get moist? Were there tears? This was a simulation not an animal. Why was she so upset?
“For some reason the patient’s body shifted. It could have been the anesthetic wearing off or even me knicking a nerve,” she sighed. “Whatever happened the body reacted and the pituitary went into failure. I think that,” there were tears now, strong ones. “I think that when the body reacted I stabbed the pituitary with the Nepofedrone. It is a numbing drug that we use to slow the functions around the area and but it should not be shot directly into the pituitary. It was all my fault, but I swear to you Trillium, on my life, I will not allow that to happen. Nothing will happen to your sister. I will protect her with every ounce of my being.” Dr. Mallin wiped her eyes.
“I am sorry. I am so sorry that I had to bring this up,” I stammered.
“No no, you needed to ask. You needed to know. This is Clover’s life we are talking about. She is a precious individual and we need to protect her. I know you have been doing it for years.”
“Could this same thing happen to Clover when she is on the table?” I needed to know.
“I cannot promise anything, but we will have a lot of team members there so that we can watch her every move.”
I inhaled a deep breath, “Do androids feel? Do they feel that surgery?”
“I think so, that is why this is so hard. This surgery is dangerous, I think I have been honest with both you and your sister about that. But we need to practice it. There are more and more cases reported every month. We need to make sure that we can do everything we can in this crazy world to save these kids. But these androids, they did not sign up for this. They were made. They were bred and created to just be these shells of humanity with illnesses and diseases to be cured. They have no choice but to be what they are. When they die, they die. Yes, they may be recreated into new shells, but that part of them is gone forever.” There was a sad smile on her face. I was sure that she had so many androids come and go on her table. There was nothing that she could do to stop it.
“Thank you for caring. Thank you for doing what you do. I am sure what you do is a faceless job, no one wants to have this burden on you at all times.”
“If you have anymore questions, or if Clover does, please reach out to me as soon as possible.” She was serious, we could call her at anytime and she would answer.
“Thank you.” my voice was barely a whisper as I hung up the call.
The phone conversation did not help my much, but it did make it 100% clear that Clover was loved by her doctor and to me that was one of the best things to know.
The morning was long. I got her dressed slower. I got myself ready slower. We took longer to get downstairs, we took steps one at a time rather than two. Nanny was up and ready, knowing that this was the day that everything was about to change and we would be prepping for a huge change in Clover’s life.
I knew she would say yes to the surgery. I don’t blame her at all. Clover could die, and I think it would be sooner rather than later or else they would not be pushing so hard to have the surgery so quickly. I would have said yes to the surgery. No matter what the odds. No matter what the cost. I could not be as strong as she was in that body. She blew me away daily. I had to be strong for her or else she just might break apart.
We all hugged with Nanny and Clover crying the afternoon away. I watched them and we talked and thought about the future. Clover made plans of running and jumping and dancing, oh there would be so much dancing. But as I sat there and thought more and more about everything, I knew there would be only one way to be sure that everything went well.
“Clover, I will be in the surgery room with you,” and I got up and walked out to call Mother and Father before either Nanny or Clover could even say a word. They had the money to make this happen and they owed me that.
The phone rang only twice, “Hello? Clover? Trillium? Is everything ok?” My father’s voice was low like he was hiding the call.
“Everything is fine Father. Clove decided to have the surgery.” I took all emotion out of the conversation, this was going to be just about business.
“I knew she would after we talked last night.” There was a hitch in his voice, full of emotion, like he was going to flood the gates.
“Yes, well i have a request. You are also aware that I do not make requests of you and Mother very often, so I hope that you will take this to heart.”
“Anything Trillium. Anything you need my dear.”
“I want to be in the room with her for the surgery. I want to look her in the eyes and watch her emotions as this went on. I want her to know that someone is there for her and will be there for her through anything. Plus,” I took a deep breath, “I need to watch to make sure the spark doesn’t fade. I know this is almost impossible to achieve, but Daddy please.”
He was silent for a moment, “I will do this for you both. I will pay any price. Trillium, thank you for always being there for Clover. Especially when I could not be. I love you both.”
“I know you do Dad. I wish she was not in between us,” I hung up the phone. The surgery was thirty days away. The day of my 17th birthday. The day I had been waiting for. It would be for the best, this would change her life and I prayed for the best. What other choice did I have?
The Day of the Surgery
The surgery was going to begin soon and we were allowed to sit with Nanny until they were ready for us. “I have a present for you.” Clover began as she handed me a package in bright purple paper with a golden ribbon. . “You can open it now or later but I wanted you to have it. Happy Birthday Trilly!”
Nanny looked at me and smile, “Yes, have birthday beautiful one.”
“You guys, you are too sweet.” I opened the beautiful paper slowly, careful not to rip and ruin the wrapping. It was a journal. A soft suede, dark lavender journal. I took a deep breath and rolled my eyes up a bit to stop the tears. “This is just the most beautiful journal I have ever seen. Thank you both so very much.”
I opened the journal and there was an inscription inside
HAPPY 17TH Bday!
You are the bestest older sister. Ever. Like ever, ever. But more than that and longer than that and better than that. You are betteristical.
I know what you told Daddy to do, and I’m doing this in pen so it always and always stays, even if I die in this surgery.
I love you. For the SuperHoodie. And the hugs and the Mississippis and the extra chocolate chips in my pancakes when Nanny isn’t looking, and for tecting me from the bullies like Matt and Jesse sorry I said his name he’s such a poopiefacedmeaniehead. I love you for making me laugh and for loving me back when you don’t have to, and never telling me not to have my dreams when I want to run and dance and all the things and all the things.
If this is the last time I write to you, I’m trying to be so smartical and write good words you want to read forever and always. You should have a better sister than me. I wish I wasn’t broken and you didn’t have to be more than just my big sister.
I never ever never read any of your diaries and I promise that they are safe. I just know your other one is almost done and this one is your favorite color. I love you, Trilobite. *haha I made a funny*
I do though. Whole bunches of lots. Someday, I want to prove it.
Your lil Bug <3
“Oh Bug,” the tears started as I picked her up into my arms. “I’ll love you forever, I’ll like you for always, as long as I’m living, my sister you’ll be.” I whispered in her ear, reciting the editing rhyme that we have played with for so long, ever since we read the book when we were young. Nanny stood up and hugged us both and we all stood there in hugging and crying, not ready for this. Not ready for the odds. Not ready. ‘Never tested on humans.’
“We are ready for you,” Dr. Mallin broke threw our fog and the dream was gone. Reality was here, it was time.
“Let’s do this Trilly.” Clover looked into my eyes and smiled.
“Yes Bug, let’s go.” I turned her so she could kiss Nanny and wipe away her tears.
“Be brave my little one.” Nanny said as we began to walk away.
“Always Mommy Nanny.” I carried her through the patient room and to the surgery room. Everyone stared. Of all doctors, all of the nurses, the staff. I felt like this was a circus. I knew the steps and had Clover as prepared as possible. I would be placed on the table underneath her and allowed to reassure her through the whole process. Clover would be paralyzed physically and would not feel any pain, but she would be awake and able to see, maybe even talk. Being in there would allow me to make sure that she did not get scared and look at the cold floor all alone.
“Now Trillium,” Dr. Mallin started, “make sure that you do not engage Clover in conversation. We want to keep the room as quiet as possible and we are unsure if you started talking if it would wake her up more.”
“You got it Doc!” I kept my attitude upbeat as I was screaming inside. I did not want Clover to sense any unease.
“Yeah Trilly! You keep that trap shut!” Clover giggled. I placed her on the cold table and stepped away so they could start the prep. I watched counting the steps as they went along.
Step 3 – The patient is attached to all the monitors, five in total, so that they can he watched closely.
Step 4 – The patient’s hair around the incision is removed
I could see Clover’s breathing becoming more even and steady. The monitors showed she was entering the twilight state. “Trillium, please come with me, I will help you to your spot.” I nodded and took Dr. Mallin’s outreached hand. I was close to Clover now and it was hard to see her so vulnerable and small. She looked so so small. I climbed on the table below her and looked up. Her small face looked back at me with those large, doe eyes.
Step 8 – Eye drops are placed in the eyes of the patient. This is done continuously to ensure the patient’s eyes stay hydrated.
Step 9 – Cutting guidelines are drawn onto the skull and the spine of the patient.
There were so many people in the room. The current count was five doctors and twelve nurses. That did not include anyone that was watching through the cameras.
Step 25 – An incision is made along the guidelines on the skull.
End of hour four, the spark was still there in her eyes.
Step 75 – The located pituitary is checked for health.
End of hour fifteen, first change of doctors. The spark is still there. I have been asked if I needed food, water, restroom multiple times, but knew if I accepted any of those I would need to leave the operating room and that was not going to happen. I just laid there. My phone has stopped vibrating in my pocket. It must have died.
Step 150 – Arteries and veins are re-connected to each area around the pituitary.
End of hour thirty seven, second change in doctors. The spark is still there. I still am refusing to leave the room for any personal need reason.
Step 230 – Extension plates are inserted into the spine.
“Never tested on humans.”
End of hour fifty five, third change in doctors. The nurses have given me an IV drip in order to keep me hydrated. I could tell they placed other meds in it, I was feeling more awake and not on the verge of passing out. I kept my gaze on my sister’s eyes. The spark was still there.
Step 346 – the patient’s incisions are stitched and stapled.
“Never tested on humans.”
Seventy eight hours. It had been seventy eight hours since the start of this surgery. There were three shifts of doctors, six nursing staff changes, no food, no bathroom breaks. I was mentally and physically exhausted. And it was almost over. I looked hard one last time into the vast pools of Clover’s eyes. The spark was still there.
I write this now with a full belly, an empty bladder, and a full heart. I write this in my brand new purple journal. I write this so I will never forget. I never want to forget the feelings and pain I went through to watch my Clover. And everything that i endured will never compare to her pain and suffering. I have seen the doctors and the nurses more times than I can count. My school has been sending a tutor to help me with my studies but my heart is not in it. I know I need to graduate in order to become a Detective Inspector some day, but can I not just want till next year? Cannot I not just have some peace?
Sometimes at night Clover has nightmares. She fights against the restraints they still kept on her and cries. Other times she screams. The nurses come running and give her a sedative in order for her to calm down. One time she screamed for me, begging for me to come help her and save her from this nightmare. “Help me Trilly.” in her pained voiced haunted my sleep for days.
Nanny stayed with us and I let her sleep on the comfy bed the hospital provided. I slept on the cot they gave me, happy to just not sleep on the floor. On the second day Mother arrived with Father. Her hair was perfect. Her makeup was spotless and she wore a black dress. I do not think she ever took off her sunglasses. They spoke to the doctors and the nurses and stood by Clovers bed, not speaking. I thought I saw tears on my mother’s face as she stared down at her small helpless child, but I could not be sure. Father openly weeped and put his hand on Clovers while he did.
Mother did not even look at me as she walked out of the room, only saying “Hello Mother,” to Nanny.
Father hugged me for a long time and sobbed on my shoulder. “My Clover. My little Clover. How could I allow this to happen? How could I not be here for you? Trillium, I am so sorry.” I hugged him tight and cried with him. I knew Mother would be mad at us. Fuck her. This is love, this is hurt, this is pain. Families needed to be there for one another in times of need.
Twenty minutes passed before Father pulled away. He straighten his tie and kissed me on the forehead. “Take care of her Trilly,” he whispered as he glanced back to Clover’s strapped body. He did not come back to visit.
It has been five days since the surgery, and Clover has finally been allowed to wake up. When I saw the flutter of her eyelids, and I rushed over to make sure the spark was still there. It was. “You stayed,” Clover’s hoarse voice whispered.
“Of course I did. I would never leave you.” I kissed her face over and over, making sure I was not hurting her. Happy tears sprang from our eyes and Nanny ran over to join us. This was a new beginning for me, Nanny, and most of all, Clover. We would be a family held together by love.