10 Things to tell ICU patient’s families to make an ICU stay easier.

In my last two posts, I talked about the 10 things that would make an ICU stay easier for patients, and 10 things not to do. (If you want to read those posts, click on “home”, and then scroll down.)

In this blog post, I’ll talk about 10 Things to tell patients families to make ICU stays easier.

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A stay in an ICU means that somebody is sick enough or been injured enough for the family and friends to be worried about death, or the future life of their family member.

The family and friends may be in shock or emotionally distraught.

Extra problems like parking might seem too hard to cope with.

For that reason, here are 10 things to tell ICU Visitors to make the stay easier for themselves and the patients.

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1.) Tell visitors where the waiting rooms are.

My mother drove in the ambulance with me, and my brother met her at the hospital doors.

They followed me and my stretcher right into the operating room, before someone told them “This is the OR, you can’t be here”, and gently lead them to a waiting room.

I’m thankful they weren’t just kicked out without anywhere to go.

2.) Tell visitors about parking.

The hospital I was in, has the most confusing parking system ever, with multiple entrances to the parking lot, and a complicated pay before you stay system.

Tell visitors, how the parking system works. If you can get daily, weekly or monthly passes, tell them they are available and where these passes are sold.

3.) Tell visitors about the cafeteria.

Tell them where it is, what the hours are, and who can go there (just staff, staff and visitors).

4.) Tell them to keep an ICU diary, to help their family in the ICU.

When I woke up from sedation, I had no memory of what happened and plenty of questions. I’ve seen tweets about ICU diaries. Tell the families, about this, and give them the option to keep a diary.

5.) Tell visitors to take pictures, but do not post them on the web.

My mother took many pictures of me while I was in the ICU. When I was able, I airdropped them from her phone to my phone. Sometimes when I’m feeling down I look at them. They comfort me because they remind me how far I have come.

6.) Tell visitors about ICU rounds.

What time are they? Can family go and listen? Can family ask questions?

7.) Tell family the ICU visiting hours, if there are any.

8.) Tell the family where they can get information on what the patient has.

Many families will have questions and will turn to the internet for help. Tell families, about good websites about the conditions the patient has. This will cut down on getting lies from the internet.

9.) If you are going to give a timeline of when a person gets better, make it realistic.

My father was told I would be recovered 3 months after discharge. It’s more than 2 years to fully recovered.

It was a disappointment to all of us, when 3 months came by and I was still very sick and week. If I was fully recovered, why was I still so week? Was that what the rest of my life would be like?

10.) Tell families about any support groups in the area or at the hospital.

If your hospital has an ICU support group, tell the families about it. Inform them how to register, and or become involved.

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Note: I realize during this Covid19 pandemic, the stress ICU and hospital staff are under might make these things harder to do.

Please take this a suggestions to help, and not finger pointing?

And again thank you for doing what you do.

Almost 10 Things not to do to make an ICU stay easier +1.

I’ve been debating doing this blog post, because it is more negative than the last.

This post and the last post started as one blog post, titled things I want ICU doctor’s to know, but eventually I cut all the negative out of the last blog post and titled it “10 Things that can make an ICU stay easier”. If you haven’t read it, it’s still here. Just go to Home, and then scroll down one post.

I know that working in the ICU must be stressful. I’ve been reading tweets of ICU staff for 2 years now, but…

Well here goes.

If you are still reading this, thank you.

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Almost 10 Things not to do to make an ICU stay easier +1.

1.) Don’t ask your patients to describe the day before they went to the ICU. They will not remember.

I went to the ICU during the coldest time of that year. Oddly enough the day before I went into the ICU, it was a nice warm winter day, that ranged between -10 and -15 Celsius.

By the time I woke up from sedation, the temperature plummeted into the -40’s Celsius. Cars wouldn’t start, nurses wore warmed blankets around their shoulders, and the ICU staff conversations revolved around proper winter clothing, cars starting, and scrapping snow and ice off windshields.

My parents couldn’t start either of their cars and therefore couldn’t visit for 2 days.

During those 2 days I was awake enough to be asked questions.

The ICU doctor asked me to describe the day before I went into the ICU.

I said it was a normal day.

He questioned further “anything unusual happen”.

“No”

“Were you feeling sick?”

“No”

“Any nausea or diareaha?”

“No”

The questions continued like this, until he left.

What he didn’t know was although I was telling the truth, from my perspective, it was extremely inaccurate.

Because I had no memory of the day before I went into the ICU, I thought it was a normal day with no memorable events. I also thought but did not say, that there was a severed human foot at the base of my bed where he stood.

It neither shocked or scared me. I just thought “so that’s where they keep amputated limbs”.

I didn’t know I vomited violently the night before, and was so week I couldn’t walk to my bed without assistance after vomiting.

This was all written out in detail in my diary, and my mother told me about it afterwards, but the doctor never found that out. I didn’t remember, I didn’t have any visitors to tell him any differently, and I was too sick to think of telling my parents to correct what I had said when they could visit.

A diagnosis was made with wrong information.

I used to think, that it didn’t matter what the story was, because doctor’s diagnosed using diagnostic tests. I thought doctor’s were just being snoopy when they asked questions like that. It wasn’t until I started reading the tweets of those of you I follow on twitter that I realized the patient history is used in making a diagnosis.

2.) Do not assume your patient doesn’t have delirium.

I may have been thinking amputated feet were kept at the bedside, but I didn’t mention it. I didn’t think there was anything out of the ordinary, about it. Why would I interrupt the doctor’s questions to ask whose foot that was?

I didn’t say anything when the coffin rolled by either. I assumed that a patient had died, and that’s how they took dead bodies out of the hospital.

3.) Be aware that delirium is a thing, and tell the ward the patient is going to afterwards that it is a possibility.

I wasn’t actually diagnosed with delirium or ICU psychosis. I was diagnosed with hallucinations after, asking a nurse if there were fire works on the ceiling or was I developing schizophrenia?

She explained that neither was the case. “Sometimes when a person swells up because of a allergic reaction like you did, their brain swells up too, causing hallucinations. Do you want me to ask a doctor for medication to make it go away?”

“No”, I said “I’ll just enjoy the light show and go to sleep”.

I didn’t sleep that night. Instead I had entire conversations with people who weren’t there, and saw babies crawling in the snow outside.

In the morning I was moved to a private room because I kept the other people in my first room awake all night by talking.

After being in the hospital for a few weeks the speech pathologist, very nicely leaned over to me, and said “I think you have ICU psychosis, but nobody in the ICU realized it because you are so smart and hid it so well. I just thought you should know that’s a thing.”

4.) Do not assume that delirium means your patients are completely wrong about everything?

I may have had delirium, but I knew the names of the medications I was taking, and I knew why I was taking them.

Has delirium ever caused anybody to know things they didn’t know before?

I was getting the proper medications in the ICU, but once I was transferred to the ward, the med student changed them.

When I asked for one particular drug that I can not live without, he told me nobody took that for anything.

Would I really be able to come up with the accurate name of a real drug, that I was taking just a few days before, because of hallucinations? (The delirium I wasn’t even officially diagnosed with).

5.) Do not lie to your patients. They won’t believe anything you say afterwards.

When I was in the ward after the ICU, a med student told me “I know everything there is to know about kidneys”, and then refused to contact my nephrologist or the community pharmacist who helped decide what medication I should take.

I knew that was a lie. If he knew everything there was to know about kidney’s he’d be a nephrologist, not a med student (who knows even less than a resident).

He lost all my respect and trust, with one lie. What he said didn’t matter to me at all after that.

6.) Do not let med students and residents work on patients who are critically ill.

After that the med student came in and told me what “the team” decided, and asked me questions “the team” wanted to know. He was always by himself.

He wasn’t educated enough to work with the critically ill. Having to talk to the doctor through an intermediary is the most garbled kind of communication ever. I didn’t have any trust in him after he lied, and I’m sure he didn’t translate my concerns or questions properly.

I should have been able to talk to the doctor myself, not use this intermediary that worked as well as a wonky walkie talkie.

7.) Do not insist that you know more about your patient’s long term health problems than your patient does.

I have been living with a variety of health problems since I was born. My first diagnosis was “failure to thrive” and imminent death.

Obviously I didn’t die, and as I grew older, my parents were given different and better diagnosises.

I may not know everything about every health problem, but I know about mine, my body, the medications I take, why I take them, and what tests need to be done when I am not feeling good.

Because this med student assumed I didn’t know any of that, he refused me medication I knew had to take, and he verbally bullied me, which leads me to #8.

8.) Do not bully your patients.

During one argument with him, I realized he could do anything. He could rape me right there in my private room if he wanted and I would not be believed, because he had all the power.

He had the power to say anything that would make him look good and me look bad. I was the one who just got out of the ICU a few days before and had documented “hallucinations”. I was the one who was “crazy”, and he was the supposedly sane, educated one.

It’s a terrible feeling to know you don’t have any power over your own health or body. I knew he was making mistakes, but he wouldn’t believe me that my kidney function could not be measured by a blood test, or that I was on some rare medication to keep my kidney function as high as possible.

I knew that if I didn’t get that medication soon, I would never get better and would just die there in the hospital from kidney failure.

9.) Do not consider your patients to be learning tools.

I am a person. I have my own life, my own thoughts, and my own emotions.

I have a family who loves me, and an important role of caregiver and at times care receiver in that family.

I have my own likes and dislikes.

My body might not work 100%, but I am 100% human.

I am not a stethoscope, MRI machine, or textbook. Unlike those things, when I break, I either die or suffer irreparable harm.

I am not a learning tool.

And as such, I should never have been treated like one when I was in the ward after the ICU.

I realize this is in the ward after the ICU and the ICU staff have no control over what happens after a patient is discharged from their ward, but I also realize I have control of this blog, and this is what I want to say.

I am a person. I am not a learning tool.

My experience after the ICU should never have disintegrated into arguments, a feeling of powerlessness, or the threat to sue that med student for everything he had, just so I could get the proper medication.

If he had seen me as a person, and not some talking learning tool, it might not have become that.

Please teach your students, that patients are people? It seems so obvious, and shouldn’t have to be said, but obviously some students don’t understand that.

I wish that a prerequisite to meds school was to actually have a chronic or long term health problem. That would make students empathetic and less likely to see their patients as living text books.

10.) Do not tell your patients to “Just Walk”.

I was so often told “just walk, you’ll leave the hospital faster if you walk”, but I wasn’t given any assistance in walking.

My balance problems and fear of falling were not addressed until 18 months later, when I finally saw a physiotherapist (one I asked to see).

Telling somebody to do something, they are afraid to do will cause even more harm because it makes the patient feel hopeless, helpless, judged, and hated.

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Thank You.

10 Things that will make an ICU stay easier:

Time…

It goes too fast when you’re having fun, like at an amusement park.

It goes to slowly when you’re not having fun, like at the dentist.

It becomes completely indiscernible, when you’re under sedation. My nephew and brother seemed like they were the same age.

It becomes untrackable when you’re deprived of any form of time tracking devises.

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Laying on your back, staring at the ceiling in a basement room without windows, makes time indiscernible. Combine that with delirium, illness that makes you so tired it’s hard to keep your eyes open, and ICU staff that come and go at odd hours, and the days just blend into each other.

When I wasn’t sedated, but still in the ICU I tried to keep track of time. As mentioned before I asked for paper and a pen as soon as I woke up from sedation. I tried to make a small calendar on one of those pieces of paper, and figured out the day by asking how long I had been there and when I went in there. When I thought the day changed, I marked it off on the calendar.

When I went to the ward (just the first bed that would take me), I continued with the calendar. The days were easier to follow, because the window allowed me to tell the difference between night and day.

But…

All this could have been helped, if people told me the time, and the day, or if there was a clock on my ceiling.

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The ICU is a very different place for patients than it is for staff. Being in a bed, with all those tubes and wires, and having to rely on others is different than standing beside the bed and being in control.

I remember trying to change my bed position to sit up a bit, and completely messing up the buttons on the bed. It wasn’t like a normal hospital bed. It was more like a waterbed. I wondered if a person needed a nurses degree to move the bed, and why it was so complicated.

I was rescued by a nurse that asked what I wanted to do. I whispered my reply because my voice was still very week.

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With that understanding in mind, I know that somethings just simply get overlooked because the experiences are so different.

I’ve made a list of things that can make life easier for your ICU patients.

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1.) Put a clock on the ceiling.

2.) Tell your patient what day it is and what time it is every time you see them. Say something like “Good Morning, it’s 10:00 am on Sunday, Jan 4”, or something like that.

3.) Tell your patients where they are. Include the name of the hospital and ward.

4.) Tell your patients why they are in the ICU.

I had no memory of going in.

I confirmed my parents storey by reading my diary entries for the days before I went into the ICU, because I had no memory. It triggered faint memories of the day before.

5.) Tell your patients who you are each and every time you see them.

If I ever knew who people were, I didn’t remember them by the time I saw them the next time. People did have name tags hanging around their necks, but they often hung so the name faced their shirts and not me. I remember one man, telling me something, but I had no idea who he was. I tried reaching out and turning his name tag around, but I just couldn’t reach my hand out to him.

In the back of my brain I knew touching him wasn’t appropriate, but I also desperately wanted to know his name, and position.

Because I couldn’t talk I couldn’t ask him.

He finally walked away without me ever knowing who he was, what his qualifications were, or even what he said. I was just to focused on the name tag to listen.

Note: Normally I wouldn’t have been so inappropriate to reach out to a stranger but all those meds, and my need to know who he was, changed the situation. I felt it was my only option.

6.) When you’re patient calls, answer.

After I woke up from sedation, but still couldn’t get out of bed, a nurse almost learned this the hard way.

He was sitting at the end of my bed doing paperwork when I called him. Instead of answering, he got up and walked away.

It was hard for me to call him because I was so weak. I kept calling because I had to use the bed pan.

Finally another nurse came to my bedside and asked what I wanted.

If that nurse hadn’t come at that time, my nurse would have had a big mess to clean up.

7.) Provide pain killers upon discharge from the ICU.

Having a tube stuffed down your throat with such force that it scapes the inside of your esophagus hurts and it leaves a lasting wound.

The pain in my throat was much more than the sore through you get from a cold. It was a raw wound all the way down, and it took about 6 months to completely heal. I thought the doctor used a drill to make me a new throat because my old one had clogged up.

To combat that I was offered cough candies. This was in the ward after the ICU, not the ICU. Cough candies do not help. That’s like offering a bandaid to a wound that needs stitches.

Painkillers, or throat spray or something I haven’t heard of is what’s needed.

The pain behind my nose where the feeding tube went in was also sore, but not as sore. It too took months to fully heal.

Make sure the ward the patient goes too, knows that the patient is in pain and cough candies are not good enough to stop the pain.

8.) Provide GURD medication.

The acid of acid reflex rubbing on a throat that has been damaged that way is agony.

Please prepare for this, and make GURD medication a normal part of treating somebody after they are extubated.

9.) Explain… everything

Explain the procedures you are going to do, and why you are doing them.

Explain the medicine you are giving and why you are giving them.

10.) If a patient is not compliant ask what the problem is.

After I was extubated I refused to eat or drink. Although my nurse implored me to I just wouldn’t do it.

I wasn’t being non-compliant just to be difficult and make the nurse have a bad day.

I wasn’t eating, because I was afraid to vomit.

When the doctor pulled out my feeding tube, he told me “Ok, don’t throw up, or we’ll have to do this all over again.”

I didn’t know I had been intubated, extubated and intubated again, because I threw up and aspirated before. I had no memory of that. I didn’t know I had pneumonia, or sepis after being intubated the first time. I didn’t even know why I was in the ICU.

What I did know, was I couldn’t vomit if I had nothing in my stomach to vomit.

Not eating seemed like the best option.

If the nurse had asked me, and then explained what happened, I might have eaten then.

In the end the nurse asked what I most wanted to eat, and then got that stuff for me from the cafeteria even though it was unhealthy.

It sat on my beside table for a while before I finally consented to eat it. I may have resisted the temptation in the beginning but not forever.

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To all the ICU staff: Thank you for doing what you do.

To all who are still reading this: Thank you for reading this blog.

If you like what you read, please share, like and retweet it on twitter, follow me on twitter or follow me on this blog.

In my next blog post I will give some things of what not to do, and in my blog post after that I will give some things of how to help visitors to the ICU.

I almost died and I didn’t wait.

I almost died.

I’m not talking about the time a semi-trailer hit the tail end of the car my father and I were in. Both my father and I escaped that without a scratch.

The car was totalled, and second hand clothing we were taking to the thrift shop, were scattered all over the highway’s ditch.

We didn’t bother to collect them.

I’m talking about 2 years ago, this christmas, when I lay in the ICU of my local hospital, with a ventilator, feeding tube, jugular IV, and multiple tubes and wires hooked up all over me.

Because of an unexpected allergic reaction to medication, I came as close to death as one can get without dying.

And it wasn’t nice.

Having come so close to death, crashing on Christmas Day, and taken the better part of two years to get back to a somewhat normal life, I am now imagining what my life would be like without me.

I sat outside on the steps of my brother’s house while my family celebrated Christmas inside, I listened to them laughing and having fun and wondered… “ ‘would they be doing all this if I wasn’t here?’ Would they be having as much fun? Would they talk about me? Would supper, the games and the laughter be the same?

My family… How would they have coped, planed my funeral, went through my things, and decided who got what?

I knew I was close to dying, but I was so sick it took all my strength to open my eyes and look at my visitors. I couldn’t talk because of the ventilator. I tried to figure out a way to communicate my last wishes, but I just couldn’t do it, because didn’t have the physical strength or ability.

Through it all I learned one thing: The most valuable thing I own, is my health card. I would not be here, or I would be in debt, if I wasn’t a Canadian and we didn’t have universal health care in this country.

Every winter I used to wonder, why I lived in such a cold country, that necessitated, boots, coats, mittens, shovels, snow scrapers, car batteries, and all sorts of other things just to survive in this frozen land. I’d say “well at least we don’t have huge bugs like tarantulas, and awful reptiles like cobras and alligators”, to comfort myself, but now…

My health card. My Canadian citizenship. That’s why I live here. It’s so much more valuable to me now. I appreciate it so much more now, because that piece of plastic, has given me access to the best health care in the world and I didn’t pay a thing.

I didn’t have to wait a second.

The hospital was informed while I was in the ambulance. When I arrived at the hospital, completely out cold, I was rushed to an operating room, where they placed a breathing tube, and other tubes and wires. Surgeons, nurses, equipment, the operating room, and everything else was all there as soon as I arrived at the hospital.

We complain about wait times in the country, but I waited zero seconds. It was there when I needed it, completely free of charge, without judgement or wait. It was based on need.

They didn’t ask my occupation, my insurance, how much money I had in the bank, or how I was going to pay for it. My health card removed the necessity.

I didn’t have to wait while my family filled out forms, or the hospital asked how I would pay for my treatment.

After surgery I was taken to the ICU, where I stayed under sedation for 8 days, and then I was taken to a regular hospital ward for another three weeks.

I didn’t get a bill.

Complaining about wait times, is a hobby in Canada, but we really don’t know how lucky we are, health delivery is based on need, not money.

Next time you have to wait for an MRI, to see a doctor in the ER, or for elective surgery, be thankful that you are healthy enough to wait. You are not dying. You are not in danger of dying. You do not have a life changing injury or illness. You will live, you will survive, you will return to your normal life, and you will not pay a thing.

You do not want to be so sick that you wait zero seconds. You do not want your family to be crying at your beside, wondering if you will live, and if you do live, what your quality of life will be. You do not want to be so sick, that opening your eyes to look at your visitors takes almost all of your strength. You do not want the pain of having a tube pushed down your throat with such force that it tears the inside of your throat all the way down, making swallowing, eating, and breathing difficult for 6 months after hospital discharge. You do not want to struggle with things you found easy before, and to cry because you can’t imagine ever getting better, even after your home, and people tell you, your lucky to be alive.

You don’t want that. Do not be jealous of the people who don’t wait. Be thankful you are not that sick. Know that services are based on need, and waiting will not kill you. It might kill the people who don’t wait, but it won’t kill you. Be thankful.

It’s hard to imagine what my life would be like without me. What would family gatherings, my home life, my family, or my daily life be like without me?

Thankfully nobody knows, not me, not my family, nobody.

And I didn’t pay a thing.

A Happy and Triumphant Accomplishment

In all the sadness, and heartache in my life right now, there is a happy and triumphant accomplishment.

I read a book.

And not just any book, but a rather large novel.

That might not seem like a huge accomplishment, but for me, right now it is.

I used to read every day. I always had a novel on the go. One year in university when I took summer session, I had to take a book back to the library before I finished it, because I kept thinking of the book while I was in class.

Because summer session goes so fast, 1 day of missed classes due to daydreaming, equals 1 week in regular session classes. I realized I just couldn’t keep daydreaming about fictional characters if I was going to pass the class.

I passed. With an A.

Unfortunately I forgot the author of the book, and couldn’t take the book out again when regular session resumed. I’ve always wondered but never knew what the end of the book was.

Before I was in the ICU, I read a variety of genres (everything from comics and graphic novels, through many and various forms of fiction, and into non-fiction, like Elisabeth Kubler Ross’s books about dying).

I like to experience and see the world through other people’s eyes. I like to learn about almost everything. (Not bugs… I found that out by experience when an entomology student tried to explain all the intricacies of the common house fly (including the reproductive cycle) to me, at a party when I was in the university. It was very boring, and I left that conversation as quickly as I could, and I avoided him after that.)

After the ICU…

The letters were just indecipherable squiggles. Even the comic book Mom brought to me in the hospital, was hard to read. Their was only one letterer, in the whole comic book that printed in a font that I could read, and even then I had to close one eye.

Oddly enough, I could write, and as I said before I wrote pages and pages of stuff, starting the first day I woke up from sedation.

But reading…

After I woke up from sedation, I couldn’t read. I also couldn’t see very well, and asked my family to bring my glasses in, but my glasses only made it worse. Way worse. Now I could see the nurses and doctor’s with three eyes even more clearly than before. I had no idea that it was delirium. I thought I had double vision, or maybe I was in a hospital ward, where everybody had three eyes.

My brother and sister-in-law brought a small library of books to me, flowers (which they had to remove from the ICU ward), and a writing cushion.

Slowly I was able to read the comics, and then large print books, but I couldn’t read for very long, without having to squint, close one eye, and tire myself out so much I fell asleep within 1/2 a page.

That was two years ago. Since that time I have tried to read several books, and couldn’t. I struggled so much that I lost track of what I was reading. I could read comic books, but not novels, and I missed that.

Enter the audiobook. It filled a need, but….

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A few month’s ago, Linwood Barclay’s book, Elevator Pitch, was finally released. Knowing I wouldn’t be able to read it, I ordered it in audiobook form. After months of waiting for the audiobook form to be released, I put the disk in the CD player, and cringed. It was awful.

An elevator was plunging multiple stories and the reader sounded board, like he just didn’t care that people were going to die within seconds.

I tried to stick it out, but in 10 minutes I angrily took the CD out and realized I would have to either read the book or never know what was in it.

I read the book. I read the first few pages in the bathtub, the place I used to love to read, before the ICU. And then I read it out of the bathtub. And then I read it in my bed, before going to sleep. And then I started thinking about it during the day. And then I read it during the day, in the middle of the afternoon, just because.

And then… I finished it.

I read the entire novel, remembered what I read at the beginning of the novel, and didn’t have to close one eye through most of it.

I was so proud of myself. To me, that is a happy and triumphant accomplishment, that signals to me, that I am getting better, and I am slowly but surly returning to the health I had before going into the ICU, because of an allergic reaction because of an allergy I didn’t know I had.

My ICU Experience in Chapters: Chapter 5

My grandparents walked by, but when I tried to follow them my Grampa turned around and said “where we are going, you can’t follow”, and left.

As I watched them walk away, I so wanted to follow. I hadn’t seen him since he died when I was a child and I hadn’t seen my grandmother in the few years since she died. She didn’t even turn around. All I saw was her distinctive red curly hair, as she walked beside Grampa.

Why couldn’t I go? Why couldn’t I follow?

I looked up and saw a nurse empty my bladder bag into a styrofoam cup and poor it into my feeding tube bag. She looked me in the eye, and continued.

I floated up into the next level and looked down on myself and the nurse. Two nurses who couldn’t see or hear me stood beside me. One said to the other “Welcome to the ICU. We allow urine feeds here. It’s a good way to slowly kill the patient without being caught. Just don’t do it when you think you’re watched by someone who won’t understand.”

I wondered down an empty hall. Where was I? Was I dead? Why couldn’t I go with my grandparents? Why did I have to stay here, were time didn’t exist, and hope died? I prayed but God didn’t answer. For the first time in my life, God wasn’t there, when I reached out to him. I looked for him, but I couldn’t find him, I couldn’t hear him, and couldn’t sense him beside me.

And it hurt. A lot. Alone and hurt, I couldn’t decide if I was in heaven, hell, or purgatory? Was there even a purgatory? I didn’t think so, but maybe this was it? Was I dead? Was I alive? I didn’t know.

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Note #1: This still hurts. I believe I did die for a short time or came very close to it. My doctor said I got as close to death as one could go without dying, and my parents said I crashed on Christmas Day.

I think this is when I crashed. I still feel the pain of not being able to follow my grandparents, and I believe it was really them.

Since that time, I have mourned my grandparents again. I have cried over their deaths more than once, and felt their deaths as if they were fresh. I know they both love me, and I have been forgiven for all the little things I felt guilty about after they died.

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Note #2: Where was God?

It’s a question I can’t answer. Why wasn’t he there? Why was he so silent? I don’t know. And that still hurts too. It hurts very very much.

It hasn’t weekend my faith. I don’t want this to become a religious discussion of doctrine or hatred, but I also don’t want it to become an example people point to, to say “there is no God”, or to say that God is a figment of imagination and once imagination was gone, so was God.

I mention it because it is part of the story. I want you to know the entire story. But I don’t want my story to ever be used against God.

I want you to know that sedation temporarily removed my sense of self. I didn’t know if I was male or female, I existed in a place without time or hope, I couldn’t find the God I knew from childhood, and all of a sudden, everything I believed about the equality of humans, went away, and I believed I was racist. Everything familiar, that I knew about myself was gone. And it seemed like it was gone forever. I lost the very essence of me.

And it still haunts me, and leaves me with questions I can not answer.

____

Note #3: To balance the discussion of God, I’ll tell you one of my experiences of God, that I can point to in my life and say “yes God is real”. I don’t want people to think I’m putting God down, and I don’t want my ICU experience to be used against God.

The following has nothing to do with my ICU experience. It happened when I was 7 years old. You can read it if you want to.

I stood in the dark, beside the train station with my mother and brother. The parking lot was empty, and my mother was trying to get into our locked car because my father left on the train, with the keys in his pocket. There were spare keys in her purse, but that was in the car.

Two men stopped to help us, and they and my mother tried everything they could to get the doors open. After one of them said they did everything they could, and were out of ideas, my 7 year old self said “let’s pray”. One of the men scoffed. I was determined that it would work. After more insistence from me, my mother said “ok let’s pray”. She took my brother and I aside, and held our hands, and I asked God to unlock the car doors.

While we were all watching, the car door locks raised on their own, without any human intervention. We opened the car doors. One of the men said something about rethinking God.

Mom, my brother and I drove away.

And because I have seen things like that, I know God is real.

Chapter 4: A permanent Coma?

It wasn’t the next morning. It was this morning. The morning before Dr. B and his induced coma suggestion was made.

The black nurse was my nurse, but…

She also knew it was this morning. She knew we jumped back in time, and she was telling another nurse what was going to happen. “She’s going to send a racist email, that will say as a daughter of Cane, I am less than her, a daughter of Able, and then she will have diareah and we will change her, and she will ejaculate all over you, and then we will call…”

“How do you know all this?”, the other nurse interrupted.

“Because it all happened yesterday, no I mean today, but we all went back in time, because she prayed to do the day over again.”

“What are you talking about?” The other nurse asked.

“I’m telling you, we all stepped back in time. You don’t remember because yesterday, I mean today didn’t happen yet, but it will. You’ll see.” She replied.

Her friend shook her head and walked away.

I was gleeful. ‘See they don’t even believe you. They don’t know about Dr. B in a box, or his idea of an induced coma. They don’t know I’m a horrible person, or a man, or a racist.’ I was very gleeful and not feeling very kind about it either.

I couldn’t say it out loud because I had multiple tubes in my mouth and nose, but I could gloat inside, and I did.

___

The time for the email came and went, but no email did.

The nurses stood around in a group teasing my nurse. “I told you, yesterday wasn’t today.” One said.

“How could we all go back in time?” Another asked.

“And if we did, why would you be the only one who knew about it.” Asked another.

My nurse looked dejected. Gone was the nurse who hoped for justice. She was replaced by a nurse who knew she wasn’t getting justice.

The time for the diareah came, but I didn’t have diareah. Nobody had to clean me up, and I didn’t ejaculate on anybody.

The time for Dr. B came, but Dr. B didn’t come, in his little box.

My nurse was surrounded. “Little doctors in boxes.” taunted one.

“None of it happened. We didn’t go back today.”, mocked another.

“Time travel isn’t real.” Teased a third.

And I began losing my gloat and started feeling compassion for her. Here was nurse who had been sent racist emails that didn’t exist anymore, but to her, they existed, and she still felt the pain.

She told everybody about the racist emails, the diareah, the ejaculation, and Dr. B, and she wasn’t believed, even worse she was taunted.

She still felt the pain of what I had done to her, but she didn’t have anybody to comfort her, commiserate with her, or even believe her. Instead she was the joke of the ICU, and it was all my fault.

Only she and I knew what happened, but I couldn’t talk because of all the tubes and wires in my nose and mouth.

She got a mop and yellow bucked and dejectedly washed the floor in silence. I felt so bad for her. She’d been hurt, but she didn’t get justice. She just got hurt more.

I considered doing something horrible to her, maybe just one song or email, but I didn’t want to be put into an indefinite medical coma. I didn’t want to stay here forever, at the mercy of Frank and the nurses. I wanted to get better and go home, but I couldn’t do that if I was in a coma. Could I?

How could I help this nurse, and not hurt myself?

When the nurse was finished mopping, she took my bed over to the cafeteria. All the nurses, sat around a table, but I lay beside my nurse. She explained I was too sick to be left alone, so she was taking me with her. The other nurses explained that their patients could be left alone for lunch time, and besides, they were just over there where they could see them anyway.

After lunch, she pushed my bed up against the counter that food could be ordered from. The kitchen was empty now, and all the dishes cleaned up. There was only a water station with styrofoam cups hanging beside it. The other nurses had all gone back to their patients, but my nurse, was alone at the water station.

She was treating me well, even though she wanted justice.

While my nurse was looking the other way, a man standing behind me, handed me a piece of paper, and told me to give it to the nurse. I neither saw the man nor read the paper. I just lifted my hand over my head, grabbed the paper from the counter and handed it to the nurse when she turned to look at me.

She looked at it, and got very very angry. “See a racist email.”, and then she took a styrofoam cup filled it with water, and dropped it into the garbage can below the watering station. It made a huge noice, and many people looked up. She took another cup, filled it with water, and dropped it into the garbage can. It too made a loud noise. I knew this was a signal that she was in trouble, and I dreaded her taking the third cup.

She took a third cup, filled it with water, and dropped it into the garbage can, making a third loud noise.

The room filled with people asking what was wrong, and she passed them the racist note. “See. See. She is racist. It’s starting all over again.” she turned to me and continued “I knew you couldn’t keep your racist ideas to yourself.”

Why? Why did I hand her that note? How could I tell her I just handed it to her. I didn’t even read it. I can’t control what that other guy is going to do? I don’t even know who handed me the note. Was it Frank? Did I have split personalities? Was it that other personality, the one who is racist? How could I change things?

Dr. B appeared before us and said “We have to put her in a medically induced coma, indefinitely”, a syringe appeared, and I was plunged into a nightmare.

I didn’t know if I was male or female, time didn’t exist, and there was noway out.

Ever.

Chapter 2: Missing Marbles

This is the my second blog post that’s in novel style. I started this immediately after I finished the last one, but I didn’t get to finish it until today. Although I have written on most days of my life since I was 11 (almost 12), this is very emotional, and must be done when nobody else is home, which doesn’t happen often.

Our house is very busy, both with the people who live here, and family members who drop by unexpectedly almost daily. Although I love having family around so often, it’s hard to get alone time, to just think and write about emotional things. I will write it, because this is an important story to tell. I don’t think the people who prescribe sedation, know what sedation is like. Because I want them to know, I’m telling my story.

I will notify people through twitter when new blog posts are posted. If you want me to mention you in my twitter posts, announcing blog posts, please tell me in twitter? You can also follow me on this blog, by using the “follow” button to the right.

Thank you for reading, and as always, thank you so much for your support in tweets, retweets, likes and comments.

____

Chapter 2:

H left, and Frank stayed. He controlled my breathing, the medicine I had, and the nurse I once felt save with. With him, everything was wrong, because he wanted me to suffer. I had caused him to be fired, after he tried to kill me, and he wanted revenge. Each time he came near me I couldn’t breath, because of buttons he pushed on the machines around me.

The female head of the ICU, who was a pharmacist, confronted him and asked him why he was staying, and asked him to leave.

“I need to find my marbles. I need them for the pianos. They won’t work without them. But I lost them here.”, He replied.

“Find your marbles, and then leave”, she told him, before sternly walking away.

He spent days looking for his marbles. Every day, he stood at the garage door of the ICU, and played with two marbles in his hand, claiming he had to find the rest of them. Staff and visitors, just walked around him.

One day my brother, K, was rushed into the ICU with the same problems I had. I couldn’t talk to him, but we both knew some sign language from childhood, because there was a child in one of our schools that only spoke sign language, and all the students in the school took 15 minutes of sign language a day. Although my brother knew more sign language than me, I still knew how to finger spell.

I asked if I could be taken to K to talk to him. My nurse didn’t know, but she asked someone else. Several opinions were given, including Frank’s. Surprisingly he agreed, I should talk to K. My bed was rolled over to K’s. I signed “K, I’m so glad you’re alive. I thought you were dead”.

K replied “I wondered about you.”

Frank got up from where he was sitting, and yelled “Don’t let them talk, she’s trying to talk him into suicide, that’s why she wanted to talk to him”, before leaning down into my ear and whispering “I hope you succeed you little bitch”, and then he went off looking for his marbles.

My bed was pulled back into it’s own curtained off spot, and Frank went to each bed pretending to look for his marbles. At each bed, he asked the nurse to make the bed stand straight up and down, so he could look under the bed. After he looked under the bed, he asked each patient their name. I knew he wasn’t just looking for marbles. There was something in the names he wanted to know. I told K, not to tell him his name.

He went to K’s bed before mine. His bed tilted back so it stood straight up and down. When it returned to a horizontal position, Frank asked K “what’s your name?”

Our mother was there, but she was mad at me and wouldn’t talk to me. She had our dog, Marshmellow, but she’d only talk to K, and show K our dog. She told K to tell Frank his name, but K would only shake his head…

Finally our mother said “His name is K.”

Frank came to my bed, and asked for it to be titled vertically, which it was. My head titled down and my feet titled up until I was hanging upside down, so that Frank could look at the spot my bed had been. When it was moved horizontally again, Frank asked me my name. I shook my head.

My mother said “I don’t know why I have such mean children. Her name is ____. I’ll help you find your marbles”, and she left with marshmellow, to help the man who tried to suffocate me, and said he wished I’d succeed in killing myself, to find marbles that I knew didn’t exist. I was sure they didn’t exist and he was only there to make my life miserable and he was succeeding.

I felt so lonely, and hurt. Even my mother didn’t like me. She not only didn’t like me, she was helping my attempted murderer find his marbles.

____

Note: This was edited after I posted it the first time. I know I should have edited it before posting it and I’m sorry for any inconvenience that might have caused.

Note #2: The sign language part is true. My brother and I did learn sign language in one of the schools we attended.

Note #3: I know that proper grammar includes a double space between a period and the capitol letter of the next sentence, but for some reason I can’t get this blog post to work that way. I know it looks odd and is harder to read. I apologize, but I have tried to correct it twice, and each time I look at the updated version, there is only one space between each period and the capitol letter than follows it. I don’t know why, and I don’t know how to change it.

This will be continued.