There is an oxygen tank in the hall, and a wheelchair in the kitchen. These new things, just came this year, but we’ve gotten used to them. Just as we got used to the wheelchair, the sask polls, and the bathchair when my mom was sick.

About 4 years ago I knew Mom was sick, when she forgot her way home from the store. I was concerned when she fiddled with the car door, trying to turn the car lights on, but I became increasingly alarmed as she drove around the area the house was in, but never turned down our street. When I asked “You do know where our house is?”, she yelled “Of course I do. I was just testing to see if you knew where it was.”

After we got home, I left Mom, with Dad at the house and drove around rural roads, until I found a tree. I parked under it, and cried, and prayed.

Thus began a year of trying to find somebody, anybody who could tell us what was wrong. By the time she was diagnosed with Normal Pressure Hydrocephalus, she couldn’t walk, or sit up, or talk about more than bodily needs like going to the bathroom, or being hungry.

After a year of searching for an answer, she spent 100 days in hospital, having brain surgery, and learning to walk again.

When Mom came home from the hospital, she still wasn’t all the way better. It took her another year to get to the point of resuming daily activities, not using a walker or wheelchair on any days, and well, being who my Mom is again.

And then I got sick.

I had a severe allergic reaction for a prescribed medication, spent 8 days under sedation, with multiple tubes and wires in me, followed by weeks in the first ward that would take me, and then almost two years of recovery at home.

And then just after I got out the hospital, Dad got sick. He was in the hospital for lung and heart problems just a few months after I got out of the hospital.

We thought it was just temporary, but he got sicker and sicker. That summer, he had trouble breathing during exertion. Mom started helping him at work.

He fell down the stairs, one day. I thought of calling an ambulance, but he wanted to finish watching the hockey game.

The year went by, as the years before. I was still struggling to regain my abilities, and Dad was losing his abilities. Mom was so healthy, one of her doctors commented on it.

And now…

I’m still dealing with the ICU. Sometimes, like right now, I feel so week it hurts to breath, and my chest hurts. There are things I can’t remember that I knew before, and memories I can’t recall.

Mom is not as good as she was either. She makes mistakes. Today she went to the store, got the wrong things, and went immediately back. Because of memory problems she went to the store three consecutive times and still didn’t get what we needed for super. We choose another recipe. It worries me that maybe her Normal Pressure Hydrocephalus is coming back. Maybe she needs a shunt adjustment.

I used to be on top of these things. I made the appointments to get her shunt adjusted and I told the doctor exactly why I thought so. But after my ICU experience, I couldn’t. The neurosurgeon would look at me, to explain how she was doing, and I couldn’t remember. I couldn’t’ explain how she was doing, or recount the little instances that backed up what I was saying.

Mom, who was feeling better, took over, but then one day I realized she’s not making as much sense as she used to, she’s leaving burners on the stove after cooking, and she’s needing something, but I didn’t notice until now. I would have noticed much sooner before. I would have been able to help her. Now I can’t even guarantee that my brain will be working when we do have the appointment with the neurosurgeon or if it will be one of those days that I struggle to remember basic things like words.

Dad, is now on oxygen. Mom’s old wheelchair sits in the kitchen, because sometimes Dad gets too tired going from the kitchen to the bedroom that he needs to sit down. He doesn’t get his own drinks or anything anymore. We get it for him.

Sometimes I am afraid he will die.

And I can’t give him all the attention I gave Mom when she was sick because I’m just not able to. I’m not as healthy as I once was. I don’t remember or notice things like I once did.

Sure I can get things like water and medicine for him. I can carry oxygen tanks up and down the stairs. But making all the doctors appointments, doing research on what all the terms the doctors use and what everything is… Mom does that, and now… Dad told her to take care of herself, because he needs her to be healthy to take care of him. He knew it was selfish, but… He has a point.

And I feel like a bad daughter at times.

I can’t do it, because I’m not as cognitively able. I also can’t do it, because I’m not as emotionally able. I have PTSD (actually diagnosed by a psychiatrist after being in the ICU), and I’m often dealing with my own emotions, and can’t pay attention to what the medical people say.

After Dad’s last angiogram, Mom asked me what some nurse said. I couldn’t remember. Before the ICU I would have remembered. I would have asked questions. Instead I was in my own little world, trying to not fall apart.

I don’t even go to Dad’s appointments. Mom does. Because I crave the time alone. I’ve always needed alone time, but now I really need it, to deal with what’s happened to me, and to write in this blog.

It’s for people like Dad that I am doing it. Because if he ends up in the ICU, I want to have made doctor’s understand what the experience of the patient under sedation is, before he gets there.

So now… There is an oxygen tank in the hall, a wheelchair in the kitchen, and it sometimes breaks my heart, because I’m not ready for my Dad to die, and I’m not fighting for him as much as I fought for my mother, because I’m just not able to.

I’ve seen tweets about “should we offer palliative care, or live saving care to elderly patients?” Really it’s questioning the worth of the patient.

Is this patient, worth all the money, time and effort to solve this problem, if there isn’t much time left anyway?

But… The person you see there in that ICU bed, is not the entire person. You don’t see the people who will be devastated by the death. You don’t see all that person does for others when they are well. You don’t see what that person did in the past. And asking about profession doesn’t tell you much beyond how much money the person likely makes, because there is so much more to a person than money.

I don’t have much money. I don’t have a valued profession. I don’t even have a house or home of my own. I live with my parents. Questions like “who do you live with” don’t tell the whole storey either.

When I say “I live with my parents”, I know people think ‘and you’re mother washes the clothes and cooks your meals’. They don’t see that my parents want me to live with them, and until I went to the ICU I did all the cooking and cleaning, and I was a caregiver for my mother, because my Dad couldn’t. He had to work.

If from those questions: “what is your profession”, and “who do you life with”, the ICU doctors had decided my life wasn’t worth saving, where would my parents be? Would the death of a child have already killed them? Where would my nephew be? He’s only a teen, and he shouldn’t have to deal with death yet.

Family’s are a unit, caregivers are also patients, and patients are also caregivers.

Please never judge somebody as unworthy of all the care you can give.

Part of me is afraid to get better, because part of me is afraid that I won’t be able to write about my experience if I get better.

As long as it’s still painful, I will be able to write about that pain, but as I get better and heal, I’m afraid I’ll forget the pain, and not be able to write about it.

I’m afraid that the father and father I get away from the experience, the less and less I’ll be able to write about it, but I can’t write about it very often.

To put myself back there, see the sights, hear the noises and feel the pain isn’t always that hard, because it happens on it’s own sometimes.

But… To put myself back there, write about it, and really get into it, needs to be done when nobody’s home, and our house is full of family that both live here and don’t live here, with people dropping by both expectantly and unexpectantly.

I love my family, and I want them to drop by as often as they wish. I kinda hope their broken shower never gets fixed, and they always have to come over to our house to shower, but constant busyness in our house diminishes my space and alone time to write as often as I wish.

And that makes me afraid that I will have to choose between healing and forever pain.

I want to write the storey.

As soon as I awoke from sedation I wanted to write it, because knew that not that many people knew about the ICU. The nurses were talking about another viral challenge that children and teens were doing that causes ICU admissions in some of them.

One of them asked “Don’t they know it could put them here?”, but that’s just the problem: even if they are told that, they don’t know what the ICU is, or what it’s like to be that sick.

All they know is what they see in TV, the movies and books. They see both Liz McDonald and Leanne Battersby from Coronation Street, getting run over by cars, having everybody visit while they are in the hospital and then a few weeks later being back on the street, without any problems. Seemingly everybody forgets they even had a problem.

It doesn’t matter what TV show, movie of book it is the story is all the same: some character ends up in the ICU, family close around them, drama is high, and then they are out, and that’s the end.

But it’s not the end. The pain of the ICU lasts so much longer.

They don’t see the pain or the lasting damage.

They see a chance to miss school for a few days or weeks, and then instant healing, followed by life going on the way it always did.

____

I read a very good article written by an ICU doctor, who said nobody understands the work he does.

Truthfully I don’t either, because I’m not a doctor of any kind, but what I do know, is I am so glad that somebody was there to save me when I needed saving.

I thought that somebody was trying to suffocate me, but I’m glad somebody was there.

Thank you. Very very much, to all the ICU doctor’s, nurses and staff out there who do what you do, even though you are misunderstood.

You know you’re story, but you don’t know mine, and that is another reason I want to write this.

I knew you didn’t know what it was like to be under sedation, and I knew I had to tell you, if I wanted to make the ICU experience of the people who came after me, better than my experience was, and I knew having previously written (unpublished) novels, that I could do it.

Nobody can help or fix, problems they don’t know about. I want the emotional problems sedation causes to be recognized and dealt will, but in order for that to happen, I need to tell you what those problems are.

____

I did not know that ICU staff are misunderstood as well, until I read that previously mentioned article.

After reading it, I realize that I can also express what the ICU is like, and make the ICU staff and environment more understood as well.

___

I want to do this. I want to tell my story. I want to make things better. But I’m afraid that as I get better, I’ll be less and less able to do it, because I will remember less and less, and be less and less able to put myself back there, and describe what it’s like.

___

Or will I?

I have always kept a diary. Because I knew I wanted to do this, I wrote everything down in my diary. Every experience or memory, I wrote down as it happened. I asked for scrap paper from the nurse, and wrote down my experiences of sedation.

I wrote my emotions, my actions and my thoughts.

But I wrote it down, out of order, and I’m kinda stuck trying to figure out what order to put everything in, and how to write it all out.

___

So for now… I don’t know when my next chapter blog post will be, and I don’t know when I’ll get unstuck, but please know, I am trying, and you will get another chaptered blog post soon. I just don’t know when.

Just don’t give up on my, quit following me, or quit being interested, before I work it all out?

I just finished watching coronation street. On it, Fiz, Evelyn and Hope try to do a math problem about making toffe apples for charity.

Before I went to the ICU, I would have been excited to do the math problem. I would have paused the show (I watch it on an app), written it all down and figured it out, before continuing with the show.

Or I would have tried to do it in my head, but with Evelyn going on about toffee apples not being healthy, and demanding to know what charity the money was for, and with the question being asked at the very end all of the numbers, I would probably have been distracted enough that I would have had to write it all down.

But now… I didn’t even try. I just let the numbers fly past me, while I felt the pain of thinking I probably couldn’t do it so why try.

___

And why does that matter and why should you care?

Because it matters to me. Because I have lost something that gave me great joy at times, and relaxation at other times. Because a patient has lost not only cognition but a huge part of her life.

If a person, who couldn’t do math at all before the ICU, found they couldn’t count after the ICU, everybody would rush to help.

But because I had an extraordinary ability before being in the ICU, people think losing it to become “normal” is fine.

But is it? Does that mean that only people with average abilities should access to medical attention to restore their functioning?

Does that work for athletes too?

Shortly after I got out of the ICU, an Olympic athlete, who has a horrible accident, won an Olympic medal. He was lauded and applauded. But what the reporters didn’t show was all the rehabilitation he got and the sports injury doctors that surrounded him as he got better.

Me. My ability has never been understood, and in some cases ridiculed. It can’t be seen or demonstrated in the on TV. It’s something I hide from all but my closest family members and professors, because people ridiculed me when they found out I liked math. “Eew. How could you like math?” They would ask, while looking around before other’s laughed.

I learned to get a wrong answer on every test and assignment, because if I didn’t I was accused of cheating.

Teacher’s told me I was wrong, when I knew it was them who was teaching the math wrong, and when I got to university I was validated. The way they taught it was wrong, and many math professors disagree with the mathematics curriculum.

Because my ability, isn’t lauded, celebrated, put on TV, and because people who have my ability don’t become celebrities, and get fan letters, my ability doesn’t matter, and when I lost it, nobody cared.

Those really stupid cognition tests they give at the ICU bedside do not detect problems with cognition, when your cognition didn’t start out the same as everybody else’s.

When I told my doctor, that I hadn’t gained my math ability yet, he said “so not that many people had that ability in the first place”, and I don’t think he believed I was as good as I said I was.

In fact, you, who are reading this now, there are probably some of you who don’t believe it.

It is not fair, that I never got any help regaining my abilities. And it’s not fair that out there, there are people recovering from being in the ICU right now, that arn’t getting help.

Why should an Olympic athlete, get all of the help available, to get him into the olympics only 10 months after he had his accident, and I get nothing?

It’s not because he paid for it and I didn’t. He’s from a county with socialized medicine. So am I. We both paid nothing.

It’s because people understand sport, they watch it, participate and enjoy it.

But math ability… People don’t believe it, or worse make fun of it.

And that’s not fair.

Please if you are in a position to fix this flaw in the system, do it. I deserve medical treatment just as much as an athlete does.

Note: This was written 6 hours after I posted Chapter 3 of my ICU experience. I’m posting it now, several weeks after that post, and then I’m going to add to it.

It’s now been 6 hours since I posted Chapter 3 of my ICU experience.

I started it last week, and finished it today. Emotionally it was one of the hardest things I have ever written. When I was done my chest physically hurt, my heart was beating so fast I could feel it beating, and I was completely exhausted. I even found it hard to talk full sentences without running out of breath.

Experiencing it, and the things you have and will read in other chapters, was also very hard.

When I write anything (fiction, this blog, ect.), that portrays emotion, I try to make the reader feel the emotion. To do that, I have to feel and remember the emotion. In this case it’s really not that hard to do, because I think about it everyday. The flashbacks are getting better, but in the beginning I went right back to being under sedation and felt, and experienced what I did then.

I think one reason this particular part of my sedation story is so hard to express, is because in this part I was exactly what I was not. My sense of self was turned upside down. I like to think of myself as a good and compassionate person. Instead I was so horrible that an indefinite coma was suggested to protect other people.

It’s the reversal of self, and the idea that I am so horrible that the world needs protection from me. That’s what the nightmare was.

That is why it hurt so much, because I was thinking I was somebody I never want to be.

My fear (it lasted more than a year), that the sedation revealed to me what I really am, a racist and evil person, isn’t true. I’m not racist. I’m not evil. I’m not wrong in who I am.

Sedation is really different. It’s unlike anything else I’ve experienced. It causes all sense of time to disappear. I saw my brother when he was little, but his nephew also existed. My brother didn’t have a child when he was 10, although he does now.

It also caused my sense of self to be questioned.

Under sedation a racist man, might think he is a black female, or is married to a black female. To him that would be a nightmare.

When I look at it that way, it’s nice to know I’m not racist. If I was, that wouldn’t have been my nightmare.

And maybe that’s the lesson here – for me anyway. I’m not the horrible person, sedation made me fear I was.

____

Note: From here to the end, was written today.

I sit here, gathering courage to write the next part of the story.

Because I am alone in the house (something that happens very seldom), I will have the time to dive back into my sedation memories uninterrupted.

I have felt an urgency to write all of this from the very beginning. I am afraid that as I heal from my experiences I will also forget, and if I forget I will not be able to write it. Each time I write I feel the pain of before, and although it’s not comfortable I need to do it, because I need to explain all this before I forget.

I live in this limbo of wanting to heal, and wanting not to heal. If I’m still broken, I can write about being broken.

With that in mind, I will begin to write Chapter 4.

Right now a friend is helping cutting down trees in our back yard, our dog is upset she can’t go out to join them, and my mother is exhausted from the work she’s done all day.

Our back yard looks like a forest of miniature trees with branches and leaves littering the yard.

Yesterday there were 5 big trees surrounding the yard’s perimeter.

Today there aren’t many.

Instead they are chopped up into small pieces that cover the yard.

All this because, yesterday a tornado blew through our yard, causing trees to fall down into the fence and our sundeck. Strangely enough the trees blew down, but the fence is intact (except where the trees were beside it).
One big, old maple tree, blew onto our sundeck and roof. It’s the one Dad’s friend is carefully chopping into pieces, to get it removed from the sundeck and roof, without causing damage to each.

______

Dad just came in, huffing and puffing. He’s recently gone on oxygen and is having trouble breathing when he exerts himself, but he wants to be apart of the activity.
Mom and I have been rushing around supporting him, getting new oxygen takes to take outside, getting tools, and just generally supporting him and his friend as they work to take the tree down before the weight of it causes any more damage.

_____

It wasn’t that long ago that I was so sick, that I couldn’t walk from the couch to the bathroom without hyperventilating. I’d just gotten out of the ICU, and I wondered if I’d ever get the energy to do any more than that.

____

It wasn’t long before that, that my mother had Normal Pressure Hydrocephalus, and I was her main caregiver. It took a year to diagnose her, and in that year she lost so many abilities.
After her surgery, she spent months regaining all those abilities.

____

We aren’t much by the world’s standards. We aren’t millionaires, we don’t have fancy houses. Status wise, well, we are just normal people who struggle with our health.
My father, a once strong man, who I though at 12 belonged in the big and tall club, now looks like an old man, dragging an oxygen tank behind him.

___

After my last blog post a discussion about taking medical history’s in appointments took place.

I said that I thought doctor’s were snoopy, asking questions about things that happened years ago. Somebody very nicely told me that medical history’s help, and apologized they seem so intrusive. (Thank you).

The question “What is your occupation”, always annoys me. If I said “I work in the prime minister’s office”, would I get more attention than if I said “I’m unemployed?”

The question “Who do you live with?” also annoys me. If I said “I live with my husband”, would I get more attention than if I said “I’m homeless?”

I always thought those questions were designed to judge a person’s worth, and then decide how hard to try, based on that worth.

If those questions are designed to get at abilities, they don’t work.

____

I am unemployed, I live with my parents, and I would be rated a the lowest abilities with those questions.

But….

If you look at what I do….

Before I became too sick to do it, I cooked, cleaned and cared for my parents.

My father had a job that took him on work trips often, my mother had undiagnosed NPH, and I was her main caregiver.

Without me, she would have gone into a home, and I’m not sure she would have gotten diagnosed.

I took her to multiple doctors, and I phoned specialists again and again telling them I needed a more urgent appointment. I pushed for somebody, anybody to diagnose her. Finally she was diagnosed by a neurologist, using an MRI.

Dad couldn’t do it, because at that point, he was home for a long weekend twice a month.

By the end Mom couldn’t take care of herself.

Thankfully Mom had surgery and made a full recovery.

By the time I got sick, Mom was able to take over the cooking and cleaning. There was a role reversal of caregiver, care receiver, that was hard on both of us.

_____

But the answers of “I live with my parents”, and “I’m unemployed” would have told you nothing.

Instead ask questions like “What do you do during the day?” and “what unpaid work do you do?”

Because paid work, is not all work. It’s not even the most important work a person does. Caring for parents, raising children, taking care of the yard, cooking, cleaning, and all the things a person does at home, are also important.
______

Ask about a person’s education or what they do for fun?

Note: I’ve learned that people don’t like hearing I’m good at math. They don’t even like it when I provide the answer to a math question they’ve been struggling with. For this reason I usually pretend to be just as bad at math as everybody else. If you think I’m bragging, I’m not. I just want to illustrate a point.

_____

I am good at math. I always have been. When I was under sedation, I realized I couldn’t remember the proof for 1+1=2, always equals 2 and never equals anything else.

It is the basis of addition, the reason additions works the way it does, and one of the reasons number theory works the way it does.

I was very upset that I couldn’t remember, because math is how I saw the world until then. I was always doing math in my head, pondering math questions, and relating it to what was happening in my life.

My mother was shocked when I went shopping with her as a child. When we got to the till, she pulled cash of her wallet, and I said a number. She turned to me and said “what”, and I said “that’s the amount of change you will get back”. I was exactly right, and had calculated the price of everything she got, the tax on that, and the change she would get back to the penny, all in my head.

She used that skill, ever after. At any point in the shopping trip, she would ask me “what’s the total now”, and I would tell her.

I lost math after I was in the ICU. I seemed perfectly fine, like I had lost no cognitive function at all. Those stupid questions about “what animal is this”, and “what’s the date”, didn’t access my cognitive loses at all, because those questions didn’t take into consideration of what I knew before.

____

A few weeks after I got out of the hospital, my father phoned to say he had seen a long train. He knew how fast he was going, and how long in time the train took to pass him. He wanted to know how long in km the train itself was.

I burst into tears. He asked me questions like that before, and I always answered. Now I couldn’t remember how to calculate it, and when I looked it up on the internet, I couldn’t understand the explanation of how to calculate it.

It hurt me deeply. I felt I had lost a part of who I was. Math was so integral to who I was that I felt like apart of me was gone.

It’s been 18 months, and I am regaining my math and cognitive abilities. My mother says she notices improvements every day. And I am thankful.

____

But the cognitive test questions, the occupation questions, the “who do you live with questions”, didn’t at all detect a cognitive problem.

If a problem isn’t detected, it can’t be treated.

I deserved treatment as much as any body else.

____

I look at Dad with his oxygen and health problems and I wonder what questions he will get? Will his status from employed to unemployed affect his health? Are those questions really used for judgement? Or are they used to assess ability?

If they are used for assessment, do they work?

They didn’t with me.

____

Dad’s friend is back. He went to the store for a new saw blade. He’s going to finish the job of tree cutting now.

And that is another thing that should be taken into account.

Who will miss the person when they die? Who does this person rely on? Who has this person helped? How did they give to those around them?

Because that is what’s important.

____

I’m going to end it hear, and see if Dad’s friend needs help.

I wrote this in my dairy the week before I went to the ICU.

I was already getting sick, because the allergy I had was the kind that builds up over time.

Diareha and vomiting had become so routine that I went christmas shopping the day before I was admitted to the ICU.

I was born sick, and I was never going to be the child to get the perfect attentence award in school. In fact an award for being healthy didn’t make much sense to me, because I never had the chance to be that healthy.

Being born sick, I learned at a very young age, that self talk can make you feel sicker or better, and telling yourself you aren’t that sick, gives you more time and energy to play.

With that in mind, 6 days before I went to the ICU, I wrote the following in my diary:

Questions:

Am I really sick?

Am I making it up because I identify as being the “sick” one?

Am I dying?

Can I control it by thinking “I”m not sick”, to make myself less sick or “I’m sick to make myself more sick?”

Can I make it better by measuring?

Can I make it better by eating 3 meals a day, getting regular exercise, using my apple watch, taking all of my medications all of the time, and fixing my sleep schedule?

Could it be depression?

And maybe if I just tell myself I”m not sick I can just go on without being sick?

I’m thinking that won’t work. That’s been my approach till now, but it’s not working.
So what will work?

_____

And then I go on to list the things I can control, and question if they will make me better.

6 days later, I was rushed to hospital by ambulance, wasn’t breathing by the time the ambulance got to the hospital, was operated on, and admitted to the ICU.

I crashed on Christmas day. When I woke up, I was told I got as close to death as one can get without dying.

The kind of allergy I had, apparently builds up over time, and then presents itself as an emergency.

I wasn’t faking it. I was sick. Very sick. But I didn’t know that all the symptoms I had were indicative that I was sick.

_____

I remember very clearly, being 5 or 6 years old, and realizing that if I said to myself “I’m so sick”, that I could make myself feel worse.

If I said to myself “I’m not sick”, I could have more energy and health to go play with my brother. I could make the pain go away, by not concentrating on it.

And it’s something I’ve kept with me since I was a child.

When I was in university, I had surgery during christmas break, and went back to school when christmas was over.

That first week of school, I was so sick, that each time I walked to my car after school, I wondered if I could make it.

I wanted to sit in the snow, and rest, but I knew I’d get cold and might not be able to get up again.

Finally, one day I phoned my mother for emotional support, and she said “Just come home”.

I said “I’m not that sick. I can do it”, (I can’t remember the exact words)

She said “You are sick. You just had surgery. Come home and miss a couple of days”. I went home. But even then I wondered if I was sick enough to miss school.

_____

This is my life, and for the most part always has been.
I’m telling you this because I know mostly doctors and hospital staff read this.

If you have a patient who knows how to be sick, they may not tell you how sick they are. To them being sick is normal. They don’t know how to be healthy. If they stayed home every time they felt under the weather they would never go out.

Regular scales of 1 to 10 for pain, don’t work for them, because they have felt pain most people haven’t felt. They are used to ignoring pain and symptoms, and might not notice them when you ask them about it.

Do not rely on personal histories, because they will not give complete personal histories.

____

If I gave a complete personal history each time I saw a new doctor, I would use up my 5 minutes of exam time, telling lengthy stories.

Besides, I just don’t remember it all, and neither do my parents.

I’m so used to telling myself I’m not sick, that telling you how sick I am, isn’t always possible.

_____

Please remember that next time you see somebody who has been sick since childhood?

Please share this and tweet it?

Thank you for reading.