10 Good things that ICU and hospital staff did:

It’s been more than year of a really stressful pandemic, that has made millions of people sick, many of them being admitted to the ICU, and many dying.

ICU’s are more full than they ever have been before, creating impossible workloads for many ICU staff.

I’m having a hard time too. Sometimes it feels like my heart will just burst of sadness and other times I’m so agitated that small things like the ever growing pile of laundry seems so monumental that it’s unsolvable.

The world is falling apart, with political changes and undercurrents, outward proud racists seem to be increasing in numbers, mass shootings, and many other things splash across our news screens everyday, making the world seem hopeless, and ending.

When I got out of the ICU, I typed in the hashtag #ICU into twitter, and was introduced to the wonderful world of tweeting ICU staff. So many of you were so kind and generous with answering questions, and many of you followed me back.

When I started this blog, you read it, retweeted it, liked my tweets and responded to my tweets. You let me know that what I was saying was important, and you listened.

Thank you. You helped me to emotionally heal a bit (not all the way yet).

___

I’ve been trying to think of a way to give back to you, during what must be a very stressful time for you. It’s stressful to be in the ICU, and to have family in the ICU, but it’s also stressful to have a suddenly increased workload, be wearing so much PPE that you look like space martians, and then be told that Covid is all a hoax, the hospital’s are empty and you are lying about that workload.

___

I have always wanted to help people with this blog. Improving the ICU for those that come after me is the very reason I write it. I admit that each time the viewership goes up, I get a little emotional energy jolt, but that wasn’t the reason I started it. It’s also not the reason I haven’t given up on writing it, even though my life has gotten harder. I feel guilty that I’m not able to write in it as much as I used to.

____

Hopefully this list of good things that happened in the ICU and in the ward after the ICU makes your load a little bit easier to carry and your heart smile just a bit for just a while.

___

1.) I am alive. I did not die in the ambulance when I stopped breathing. I did not die on Christmas day when I crashed.

2.) I was so out of it. I knew that occasionally there were people who stood at the end of my bed and talked, but I didn’t know who they were or what they were talking about. I thought maybe they had their staff meetings there.

One day my nurse leaned over me and said “the doctor’s are going to be doing rounds soon. They will stand right there,” she pointed, ”and they will talk about your case. You can listen because it’s about you. You can also ask questions if you want to.”

3.) I couldn’t speak because I was still intubated. I asked for paper and wrote “I’m sorry.”

My nurse looked at me and asked “Why? You didn’t do anything wrong?”.

“I’m sorry for being racist.” I wrote.

“When were you racist”, she asked.

“When I sang racist songs to you.” I replied.

“You weren’t racist. You didn’t sing anything racist. You can’t sing. You can’t even talk. You have a tube in your throat that prevents that. You’re writing this down to me right now.”

“Oh”, I wrote, and leaned back.

She didn’t say I was the worst person in the world, because I was racist, which I feared she would. She didn’t laugh when it was obvious I was talking about something that didn’t happen. She continued to treat me very well, without resentment. She was one of the best nurses I had and I really really liked her.

Note: This will make much more sense if you you read My ICU experience in chapters, on this blog. There you will see that under sedation I didn’t know if I was male or female, and didn’t know if alive, dead of in purgatory (I’m not even Catholic). It was a complete loss of self, including my believe I was the worst person in the world who was a racist, and was so bad, that the doctors decided to keep me in a permanent coma to protect the nurses.

Although my nurse didn’t know this, and the apology made no sense to her, she didn’t take this apology the wrong way, and I am very grateful.

Over the days after I woke from sedation, her face became a reassuring symbol that I was safe in her care.

4.) When I was sedated, and totally out of it, a nurse washed, and braided my waist length hair. She even put her own scrunchies and barrettes in my hair to make me “look nice”. That touched my parents so much that they told me about it several times.

To be perfectly honest: It’s not waist length anymore. I got it cut to be layered and about 6 inches shorter about 3 weeks ago and it still seems really short, although to others it’s probably still long.

5.) When I asked for information on twitter, you tweeted me studies that answered my questions. I needed to understand and I wanted to tell the world about what the ICU was like, and you helped me to do that.

6.) When I tweeted asking about the long term effects of sepsis which I got while I was in the ICU, you told me about the UK Sepsis Trust, where I got all the information I needed.

7.) An ICU doctor told this joke “An ICU doctor went to a conference. His wife was worried about being lonely when he was gone. He told her to get something to keep her company while he was gone. When he came home, he found his wife in bed with another man, and yelled “A dog, I meant you should get a dog to keep you company, not a man.”

Yep it’s a corny joke, but it and all the other corny jokes he told made me smile. He started each day with a corny joke that made everybody laugh, and I’m sure he didn’t realize his patients heard him, but I did, and it brightened a part of each awake days there.

8.) I have started many tweets with “As a patient, I”. You considered and respected one patients point of view. Thank you.

9.) I laid in my ICU bed. A nurse took a Christmas mint out of a pile of Christmas mints and put it in her mouth, before coming to my bed and leaning over me. The smell made me want a Christmas mint, which I love.

She must have realized this, because she walked to the garbage and spit it out, before coming back to me.

That small kindness, did not go unnoticed

10.) I wanted a pen and paper almost as soon as I woke up from sedation, and I was freely given a pen and as much paper as I wanted. I still have those notes that I wrote about what happened under sedation.

______

Hopefully this brightened your day a bit. It brightened my day to write it, so much that I continued after 10 and wrote 20 things.

I will post the first 10 now, and the next ten when I have time (hopefully tomorrow).

If this made your smile, and helped you please help other people by tweeting good things that happen in your ICU, with the hashtag #GoodICU and / or sharing this blog post in any way you can.

What to tell your loved one in the ICU.

I stood at the nurses station, swaying at bit, from the unsteadiness that started in the ICU, and watched a nurse write my request in a big blue binder. “What is that”, I asked.

“It’s your binder.”

“What’s in it?”, I asked.

He used the fingers of his right hand to ruffle the pages of the binder, “It’s the history of your stay here. Everything that happened to you, is written in here.”

“Can I read it?”, I asked.

“You don’t want to read this.”, he replied, which is a strange response since I just asked if I could read it.

“No I want to read it”, I said.

He continued trying to talk me out of reading it, but I knew the law and said “It’s my file, and the law says I can read anything that’s about me.”

“You’ll have to fill out a form to get a copy.”

“Give me the form.”

“I’ll get it to you later”.

I wobbled back to my room, still feeling extremely unsteady, as if I might fall over at any minute.

He never did bring me a form. Everyday I went to the nurses station and asked for a form, and everyday I was given a delay tactic.

When I got home from the hospital, I complained to one of my doctors about not being able to read my file, and he told me what website to go to get a form. I filled out the form, paid the money, and got the file.

I wanted that file, because I did not know what happened to me. I had a vague idea, but not enough to satisfy my questions that nobody was answering.

My family would probably have answered the questions by that point, but our area of the world had a cold front at that time, preventing most cars from starting and many roads to be closed.

What should be told to an ICU patient and when? That was a question asked by Dr. Megan Hosey that said “Family members of ICU patients commonly ask me “What should I tell them about the ICU and when?”, before following up with a tweet that asked ICU survivors what they thought. (I would link the tweets here, but I don’t know how.)

Thank you Dr. Hosey for the idea and allowing me to respond to your question in a blog post.

____

I had no idea what happened? I had no memory of the days before I entered the ICU and my memories of being in the ICU were delirium filled.

Before I woke from sedation I knew on some level that I was in the hospital, but I didn’t know why. At some point my brother told me I had started smoking and it was my fault I was in the ICU. That wasn’t true. I’ve never smoked in my life.

While your loved one is under sedation talk to them and tell them:

1.) Where they are

2.) Why they are there

3.) Why they can’t move (bed restraints, sedation, ect.) Why they are in bed restraints and or under sedation. Don’t let them think it’s because they are a bad person, somebody is trying to kill them or anything else like that.

4.) That they might have delirium what they see might not be real. (I saw all sorts of things, that you can read about in the blog – both written now and written in the future).

5.) Who is visiting

6.) That you love them.

When they wake up from sedation:

7.) Repeat the information above, because it might not be remembered from one day to the next. I seemed to have lost my object permanence when I was in the ICU and for months afterwards. If something wasn’t right in front of me I simply didn’t think about it. I brushed my teeth, if I saw my toothbrush in the morning. I had to keep my pills on the table where I sat or I’d forget to take them all day. I ate only when I was hungry, because it was hunger that reminded me I needed to eat. Because things are so easily forgotten when a person is extremely sick, things will need to be repeated.

8.) The time and date.

Time does a strange little thing in the ICU. It’s hard to understand, but it bends and becomes non-existent. At one time my brother was there, only he was a child, and his son was standing beside him, the same age as he was. Without clocks or calendars time becomes even more confusing that it already is. Many ICUs don’t have windows and the lights are on all day and all night long, making any way tracking time difficult. Help your loved one to orientate to time, by telling them the time and date.

9.) Answer any questions about why they are there.

After the ICU but in the ward.

This is where I wanted more information, and started asking for my file. I still had a bit of delirium but I knew that the clock wasn’t really sliding off the wall. It was just because I was seeing things.

10.) Tell the person what happened.

11.) Answer all the questions asked.

12.) Tell them about delirium, and that what they are seeing and hearing might not be real. They don’t need to be afraid of it either.

On my first night in the ward, I called a nurse in and asked “Are there fire works on the ceiling, or am I developing schizophrenia”.

She asked “Why do you think you have schizophrenia?”

“Well because I’m seeing fireworks on the ceiling, and I don’t think medicare pays for such fancy light shows in the hospital. That would be a waste of healthcare funding.”

“No,” she said, “the health region does not pay for light shows in the hospital, but you don’t have schizophrenia either. You have been through a very traumatic event and the brains way of dealing with that is to see and hear things that aren’t there.”

“Ok.”

“Do you want me to get some medicine to make it go away.”

Still watching the light show I said “no, I’ll just enjoy my own private fireworks shows. As long as I’m not getting something else wrong with me. I didn’t want to deal with getting schizophrenia that’s all.”’

The patient across the hall laughed, and the nurse smiled before saying “ok, enjoy the show”, and I did, that is until the not so nice stuff started happening.

Once I knew that I was seeing things, and was not developing a mental illness, the delirium was easier to deal with.

I do wish the nurse had called it delirium. It wasn’t until I got home and read tweets on twitter, that I realized it was delirium.

After they are home:

I am guilty of this as well. Before I got sick, my mother was in the hospital for 100 days because of a major brain illness. She remembered nothing about what happened when she was sick. When she got home from the hospital she asked questions about her illness almost everyday. Many times it was the same questions.

Although I answered her questions and talked about it when she wanted to talk, I was frustrated, and I don’t think I did as well as I could have.

When I got home from the hospital, I understood and felt a tremendous amount of guilt for not being as patient as I should have.

Thankfully she was more patient than I was, and answered my questions again and again.

It’s hard not knowing what happened, why it happened, but also having this false delirium induced memory of what happened.

13.) Allow the person to discuss that delirium. It may not have happened to you, but it happened to your loved on, and it was scary, and horrifying. It’s a trauma in an of itself, and it can cause PTSD. I was diagnosed with PTSD from my ICU experience. Sometimes calling it delirium seems like a lie and a threat to me, because to me it really happened, and to me it still hurts a lot.

14.) Help your loved one get their own file if they want it, and allow them to read it at their own pace.

15.) Show them pictures if you took any.

My mother took pictures, and I copied them onto my phone. I still look at the often. At first I looked at them almost everyday.

16.) Tell your loved ones, months and years later, that it’s ok to still think about it, wonder about it and ask questions about it. Don’t expect your loved one to be over it. To them it is not in the past. It happened. I think about it everyday and if I allow myself, I feel the pain of it everyday. Things have moved on with my family, and I feel the need to move on with them, but it’s not something I’ve gotten over. I still want to talk about it, write about it and deal with it, but I also feel selfish for wanting to.

Thank you for reading this. If you want to know more, you can read more of this blog, or follow me on twitter for updates. If want to be mentioned in my blog twitter updates, let me know.

Please like this blog post or tweet the tweet it was mentioned in, and share this blog with others? You’re sharing it and liking it, encourages me to keep writing and makes me heart smile.

I yell profanities at my organs.

I was born with internal differences to my organs.

One of my organs is a complete brat, who stands up and yells “Pay attention to me. ME ME ME! I need to be the CENTER of attention. It’s all about ME. Only ME!”, whenever any other part of my body is sick and needs attention.

And I end up yelling “Fuck You (name of organ)”, to my organ. Sometimes it’s an entire paragraph, of “Fuck You. You are not the centre of attention. It’s not all about you. Do not bother me.”

But of course it is… partly.

That particular organ has gotten a lot of attention, and is by now it completely used to demanding my life revolve around it… maybe I should be too.

I’m not. I’m angry with my body. I can not and will not embrace my body, and not because of it’s looks, weight or any other superficial reason.

I will not become “at one with my body”, or any of those other hokey euphemisms healthy people tout without knowledge.

I will not accept my body is me, because I’m not broken.

I may be flawed, I may have grumpy days and days that all I want to do is cry. Everybody does.

But I am not as broken as my body.

I have always known that my body and me are separate. Even as a child. That’s why I can yell “Fuck you”, to my different organs, without saying “Fuck you”, to myself.

____

I wish all health professionals knew what it was like to be sick, to have an organ or body part that doesn’t obey, to know that the body and mind are not one, and to know what it’s like to just get up in the morning and ignore aches, pains and illnesses until it can no longer be ignored.

I wish they understood that dilemma when asked a piece of medical history. Should I mention it? Is it related? It’s really to do with this other problem I’ve already been diagnosed with? Will it just muddy the water?

If I mentioned everything in my medical history, you and I would be in that examining room way too long. Try all afternoon.

And then there are the times I just simply forget to mention things because I’m so busy ignoring them that I’m still ignoring them in the examining room.

One specialist doctor asked so many rapid fire questions, I didn’t have time to think about any of the answers. After 10 or more questions quickly fired in my direction, she told me there was nothing wrong with me, and not to waste her time.

She asked so quickly, I got anxious and answered all the questions wrong. I asked for a second opinion but the second specialist, looked at the notes of the first doctor and said “I talked to Dr. So and So. These are her notes, and I agree with her, but here’s some medication you can take.”, handed me a prescription and got up to leave the room. I followed because I had no other choice.

I still wonder if both doctors are wrong, but with her notes, whatever they say, every specialist in her field in my city, who all work out of the same hospital, are going to agree with her. Asking for a third opinion is a waste of everybody’s time, and the systems money.

My family doctor agrees. He thinks I do have the problem he originally sent me for, and is trying to manage the problem without the direction of a specialist, but why should he have to? Why should one doctor’s complete ignorance about what it’s like to answer those questions when you have been sick all your life and have multiple diagnosis’s, get in the way of my health? Why should she have so much power?

Maybe if she understood how difficult it is to answer questions delivered so quickly when you’re asking yourself so many questions about how to answer them, she would give her patients time to think before she asks another question?

I really do wish that all medical professionals were given a drug with a half life of 2 weeks (or even a month), that made them chronically sick for that time period. I want them to wake up in pain, and consciously think about getting out of bed, before they do it.

I want them to have a handful of pills they have to take multiple times a day, and figure out how hard it is to remember each and every dosage, each and every day.

I want them to know what it’s like to be hungry, know you have to eat because not eating will make you sicker, but not have the energy to cook something. Finally you just pick something from a box, put it in the oven and forget about it until it’s ready, but it causes guilt because you know you need to eat better, and unhealthy food might make things worse, but it’s better than eating nothing, because if I eat nothing I can’t take my pills and then…. And the thoughts go in circles of guilt.

I want them to know what it’s like to be too tired to exercise, but feel guilty that you aren’t exercising because you know you should, and then have to explain that to somebody who judges when they “how much exercise do you get”, at your next doctor’s appointment.

I want them to understand how much guilt there is in being sick.

I want them to know they don’t have to add more guilt, and that adding guilt doesn’t help me to be more “compliant”, to only makes it harder.

I want them to know how chronically sick people can be caregivers of even sicker people in the family, put themselves last, and feel guilty about paying attention to their own health problems (even mentioning them), because somebody else is sicker.

I want them to know what it is like to calculate in your head, how much energy it takes to go to the bathroom, and then figure out if it will take more or less energy to return to the place you are when you’re done or just go to bed.

I want them to know, that they don’t see patients at their sickest (unless they are in the ICU), because patients who are really sick, don’t have the energy or health it takes to get dressed, get in the car, drive to the doctor, find a parking space, walk to the office, and see the doctor. Instead they wait until they are feeling healthier to either go to the doctor or just forget about it and get one with life. Or they get so sick they can’t stand it and get somebody to drive them to the emergency room.

I want medical professionals to take a drug, be this sick for a month, and truly understand what it is like to be chronically sick.

____

Until you know what it’s like to yell one of your organs with frustration, anger and desperation, and understand what it’s like to be sick (from experience) don’t judge me.

Ten Reasons You Need Visitors to help with your Workload during Covid.

1.) It helps the already overworked staff.

Visitors can get ice water, ice chips, warm blankets, toast, snacks and other things.

I know that hospital staff are overworked during Covid. Work loads are reduced when visitors get these things.

I know that some visitors are more work than any thing else.

When Mom was in the Rehab hospital, there was a family who was told they couldn’t visit, because too many things went missing (including medication) when they were there.

But… the trustworthy visitors can save you time, and energy, by getting things when the patient needs them.

I still remember the passcode to the door of the kitchenette when Mom was in the main hospital, before she went to rehab. I didn’t give it to other families, but I did get things like toast, boost, and puddings for Mom. Because she wasn’t eating, we were encouraged to offer her food several times a day.

My getting her things made their workload lighter several times a day.

2.) Happier patients are healthier patients.

A hospital room can end up feeling like a prison, especially during days without visitors.

Mood and attitude affects health. I know this from experience, because I’ve been sick all my life.

I clearly remember as a young child figuring out that focusing on my pain and illness only made it worse, and ignoring it, allowed me to play with my brother for longer periods of time. (You can read the blog post “The Week Before I Went to the ICU” for more information).

3.) Happier patients can decrease the length of the hospital stay.

When I had surgery as a child, they expected me to stay in the hospital much longer than the 28 days I did, after surgery. I believe the difference, is my mother, although pregnant with my brother at the time, had only one child outside the whom. She was able to stay at the hospital 24 hours a day, sleeping in the bed beside mine.

Originally she slept on an air mattress beside my hospital bed, but during the first night, when my mother was pumping up her air mattress for the 2nd time, a nurse offered her a hospital bed, and tied the two beds together. (If you are that nurse, and are reading this – thank you).

4.) A positive mood, makes a more compliant patient and a less grumpy patient.

5.) A visitor can sometimes give a more complete story, than a very sick and confused patient. This aids in diagnosis, treatment and compliance.

6.) Staff can not be with patients 24 hours a day. Visitors can.

7.) When the patient is discharged, the family will need to know what happened in the hospital, and how to take care of the patient when they are at home. They can not do that if they were not there and do not know what happened.

8.) When the patient goes to their family doctor, a specialist appointment or returns for another hospital stay, the visitor can tell the story of the hospital stay.

My mother does not remember what happened when she was in the hospital. She has no memory of that entire year, of many of the acquaintances she had before, of many family events and many other things. Her normal pressure hydrocephalus took a lot of those memories away.

I remember, because I’m was her caregiver.

9.) Adequate treatment partly depends of an accurate storey.

When I take Mom to emergency and hospital appointments now I am not allowed to go in. She gets inadequate treatment, because she doesn’t remember her own medical storey, and I’m left trying to explain it to the triage nurse before she she even sees the doctor. I can’t anticipate every question the doctor will have and there isn’t any privacy outside emergency room doors.

Depending on how she’s feeling that day, she doesn’t always tell what she does know accurately.

It is not fair to deprive her of a full and complete medical exam.

10.) Recovery depends on a will to live.

I know when I was in the ICU, the hospital staff worked hard to make me live, including putting me on a ventilator, and countless other machines, as well as using the crash cart, jumping on top of me and doing stuff to save my life when I crashed on Christmas day. (My mother was surprised at how quickly “30 people where there” and how “that one man jumped on your chest”).

I also know I was fighting to live with all of my being. I fought so hard to wake up, to live, and get healthy again. I knew I was dying. It’s so hard to explain, but I know if I had wanted to choose to die, I could have.

If when faced with the choice to keep fighting or just let death take over, the patient is wondering where they’re family is, death would be an easier choice to make. Certainly it would be much less work.

____

Note #1:

If you are confused: I was Mom’s caregiver when she had Normal Pressure Hydrocephalus, and a few years later when she recovered enough to take care of herself, I got sick and went to the ICU for an allergy I didn’t know I had. When I was discharged she became my caregiver. When I recovered enough to take care of myself, my father was diagnosed with a terminal illness, and my mother and I are his caregivers now. The lives of caregivers and patients can overlap, and roles can dramatically switch.

My mother and I both might be able to take care of ourselves and are currently caregivers for Dad, but neither of us are fully recovered. Hopefully we will be in the future.

_____

Note #2:

I know that having visitors during Covid is complicated, but it’s very important, and I implore you to find a way to allow at least one visitor per patient during this pandemic.

It will help your patients and your staff in so many ways, especially, chidlren, teens, seniors, the critically ill, and those with cognitive issues.

I know you will have to screen visitors, because bad visitors can make things worse for everybody.

____

Thank you for reading this. Please share it however you want. You can retweet, or like the tweet you read this in, share it on your other social media platforms, or follow this blog.

I will try to post something written by me or a guest blogger every Friday (which I have no realized that for some of you is Saturday, because my Friday night is some people’s Saturday mornings).

On a personal note, my life has become very stressful, and small things like getting dressed (when during covid I have nowhere to go), and doing anything more than watching streaming services when somebody doesn’t need me, is becoming harder and harder.

If you are reading this an are helped by this, please let me know, by commenting, retweeting or sharing this. I need the encouragement. If you have any idea how to get out of this sadness, let me know, even if it’s just a cute video, or useful advice.

Thank you.

Tide Pod Challenge and Covid19.

Things have changed in the world because of Covid19. Entire countries have shut down, some people have taken great precautions and some people have not.

When I was in the ICU, the Tide Pod Challenge was popular. I overheard some ICU nurses discussing the challenge, and questioning why people didn’t take warnings about not consuming poison seriously.

Today the danger is different, but the people’s reaction to it isn’t. Many people are taking precautions, by wearing masks, washing their hands and staying at home. Many other people are refusing to, protesting new pandemic rules, and ignoring all sensible advice about not getting covid.

The cause of the danger is different, but the response is the same: some people are completely disregarding medical advice.

The question is the same: Why don’t people listen to medical professionals.

The answer is also the same: People don’t understand what is like to be that sick. They think it is the same as being sick with the flu.

For most people, the sickest they’ve been is having a bad cold or stomach flu. They’ve never been in the hospital and they never had a serious or life threatening medical condition.

They think the most pain they can ever be in is child birth, with painkillers.

They haven’t been in so much pain, that all they can see is a black void of nothingness. They haven’t been taught how to embrace the pain, and go through it, because fighting it just makes it worse.

They haven’t had to work to open their eyes when visitors come, but found that it took more effort than anything else they had ever done before. They haven’t tried desperately to get untied from a bed, so they could escape the nightmare of sedation.

They don’t understand, and likely never will.

They are more likely to think of a violent stomach flu, in which you can’t vomit anymore, because you’re stomach is empty, but still you’re stomach tries to throw up nothing, when they think of being very sick, than what I described above.

If they were told, “wash your hands, wear a mask, and stay at home if you can, or you will have a violent stomach flu, that will go on for days, maybe weeks”, they would be more be likely to wash their hands, wear a mask or stay at home, because to them, being on a ventilator in the ICU is so foreign it might as well be mars.

It’s just incomprehensible and completely beyond any comparison to any place they’ve ever been to or anything they’ve been through before.

With a threat that is so unknown, rarely talked about, misrepresented in the media, and rarely seen in person, most people just truly don’t understand the risk.

Like the teens consuming Tide Pods they think that getting sick, is at most a trip to the hospital, watching TV all day, getting meals served at meal time, sleeping in an uncomfortable bed, and then resuming normal activities in a few weeks.

They don’t know that the hospital stay and delirium can cause PTSD, that muscle mass severely decreases in the ICU, or that the recovery process lasts months, if not years.

They can’t understand, because they have no basis, in which to understand.

Most fictional characters who’ve been in the ICU, aren’t that sick. In one show I saw, a main character decided he had enough of being in the hospital, pulled out all of this wires, and unhooked all of his machines in one motion, before getting up and walking out of the hospital, with his nurse following behind saying “you can’t go.” He didn’t even need to worry about a hospital gown that didn’t quite close in the back, because his fit perfectly.

Although people understand fiction isn’t real, if it’s the only source of information you have about a place you’ve never been, your imagination of that place, will be close to the fiction you watch and read.

We who know what it is like to be patients, staff in the ICU and visitors in the ICU, need to tell them what the ICU is like. We need to speak up and say “hey, as sick as you’ve ever been, this is so much more than that.”

I truly believe that most people, would not want themselves or their loved ones, to be in the ICU if they knew what it is like. It’s not like the maternity ward, that most people have visited, or like the emergency ward that many people have waited hours in to see a doctor. It’s for the very sickest of people.

If I told people “what ever you do, never go beyond that wall over there. Don’t go through that door, ever.”, but I never told them what was behind the wall. Even if there were dragons, volcanoes and hurricanes behind that wall, few people care that I was telling them never to go through that door and behind that wall, especially if they didn’t know me, and most especially if other’s, they did know, told them that harmless puppies were behind that wall.

Add discomfort like isolation, and mask wearing in the room they were suppose to be in, and many people would completely disregard the warning.

Other’s would loudly proclaim me to be stupid, or even destructive.

This is why misrepresentation of the ICU is wrong, and it is why for those of us who know staying silent about the ICU is wrong.

I’m telling my story as much as I can. I’m yelling as loud as I can but I need you to yell too, and maybe we’ll get people believing that getting Covid19 can be worse than following public health advice about washing hands, wearing masks and social distancing.

Maybe we can stop this together. Will you help me?

____

Share your storey. Tell it to as many people as you can. Write it in a blog, or a letter to the editor, or in any other way you can.

You can share this blog post by tweeting, retweeting it and liking it on twitter, and sharing it on your other social media platforms.

If you like this post and want to read more like them, you can follow me on twitter, or on this blog itself.

Thank you for reading.

Crying Alone in a Quite Basement:

I sat alone in a quite basement, the sound of Dad’s oxygen machine, rhythmically going in and out, in and out, as I cried, and tried to stuff my feelings beneath the surface.

It didn’t work very well.

In the medical field the roles don’t often converge. Caregivers don’t often become patients, and patients don’t often become hospital staff.

In my home, the roles converge so often, that I have been both caregiver and patient several times.

Both are hard.

It started when I was born, a very sick baby, that was diagnosed as “failure to thrive”, which means “I don’t know what’s wrong with her, and I don’t care. Take her home, so it won’t be my problem any more.”

My mother, thankfully wouldn’t accept that diagnosis, and took me to a series of doctors until I was diagnosed, and eventually treated with surgery.

The daughter whose live a mother saved, grew up to save the mother’s live.

I noticed something was terribly wrong with my mother, when she got lost coming home from the store, which is only 2 blocks away.

Thus began the same desperate search for a doctor to diagnose Mom. By the time she was diagnosed, a year had gone by and she couldn’t get out of bed, role over by herself, or have a conversation beyond bathroom needs.

That winter was a cold winter, but both Mom and I missed it. Homecare people came and went, complaining about the cold as they did, but neither Mom or I noticed it, because she was consumed with illness and I was consumed with getting her better.

Dad, who traveled for work, came by every two weeks for a weekend. Sometimes he’d stay longer and sometimes he wouldn’t.

In the end, he took a leave of absence, and stayed home all of the time.

We finally got a diagnosis and surgery, followed by time in rehab to learn how to walk again.

She was still recovering when she got home.

Just as she got almost completely recovered, I had an allergic reaction to something I didn’t know I was allergic to, and ended up in the ICU. In the ICU I got sepsis and pneumonia and crashed twice. Once on Christmas Day.

It’s been almost 2 and a half years and I still am not fully recovered.

A month after I got home from the hospital, Dad got sick, and ended up in the hospital. Thus began a two year battle with his health.

He is now dying.

There is a hospital bed, in the living room. It mostly likely will be the bed he dies in. There is an exercise bike in the office, making it very hard to write. Right now, I’m on my bedroom floor, surrounded by both clean clothes that haven’t been folded yet and dirty clothes that haven’t been washed yet.

The basement is a huge storage room, where everything that can’t fit up here anymore has ended up piled up. It used to be a furnished basement, but as our family gets mired more deeply into Dad’s illness, the basement gets more and more stuff, to make way for new things like hospital beds, and bath chairs, and medical supplies upstairs.

Just as our house is in disarray, I feel like my life is in disarray. Because we are in the middle of a pandemic, Dad’s care has fallen on us, and us alone. Family can’t come over, although slowly we are breaking the rules more and more, and maybe they will end up completely broken. I don’t know.

I haven’t had a chance to emotionally heal from any of this. One thing happens, so suddenly that the emotional healing from the last thing hasn’t been completed. Wound after wound piles onto my being, creating guilt that I am inside yelling “what about me”, as my father lays dying in the living room.

That is what live in like for your patients and their families.

Before they even got to the ICU they may have had problems caused by prolonged illnesses, or things completely unrelated to medicine.

And then the ICU brings with it all the things I’ve described in this blog under the “chapters” tab and the other entries. For the family it brings fear of death and the unknown.

It can be pain added to already broken people.

If Dad ends up in palliative care or in the ICU, I will already be broken before he gets there, because right now I am very broken. I cried much of yesterday, and today seems like another day of crying. My eyes are swollen, I haven’t bathed in several days, the house is a mess, and I’ve been displaced in my own house. I don’t know when it will ever end, because even when it does end with Dad’s eventual death, my pain won’t end. It will only get worse.

Please see your patients and their families as potentially broken people? Don’t judge their actions as people who are completely in control of their lives, actions and emotions?

For you, each day in the ICU is a completely normal day. For your patients and their families it could be the worst day of their lives.

If they need things repeated, if they seem in a fog, if they snap at you, if they seem just “off”, it is because they are under stress. They could even be in shock.

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.

___

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.

___

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.

——

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.

——

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.

—

If you like this blog please share it with others. You can like it on this blogging platform, follow me on this blog or on twitter, tweet, retweet and like on twitter, or share it in any other way.

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.

____

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.

____

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.

___

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.

____

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.

___

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.