The Life of a Bored, Paralyzed Mute.
Every once in a while, when someone hears my story, comments like “you’re an inspiration” and “I could never do that” are frequently heard. When told these things, I almost feel guilty – like I’m a fraud. A fraud because I believe that given the situation, anyone can react bravely to dire circumstances. Mainly because it’s the ONLY way you CAN act without completely losing it. And dealing with crap is a much better alternative…
In this entry, I am going to post about my conscious life while in the ICU in the Czech Republic (my unconscious life can be found in the Inside the Coma post). What happened? What was it like? How did I pass the time? This is a fairly lengthy entry, but it’s the only way I can fully explain “The Life of a Bored, Paralyzed Mute“. Enjoy:
While I was in the ICU (after the gallstone removal but before the coma/surgeries), I talked plenty. Not to the nurses, mind you, because they didn’t speak English. I talked a lot to my employers (they were a little ‘peeved’ I was missing work), to a few people who visited me (an ex boyfriend and my roommate) and my father (who was told via phone that I was dying and that he should fly over from Canada to say ‘goodbye’).
I was pretty cantankerous. I felt inconvenienced. I wanted to get out of the hospital and get back to my life as soon as possible. Because I was never informed how severe my situation was until months later (I am so very thankful for that), I did not understand why my father was arranging for me to pack up to return to Canada. Obviously I couldn’t physically pack by myself, so he took photos of my closet and desk/bookshelf and asked which items were indispensable, and what to pack.
Fast forward a month later when I woke from my coma. I had a tube in my throat helping me breath. That hindered my ability to speak. Already vocally challenged with a language barrier, the inability to verbally communicate AT ALL was an appalling experience.
I kept wanting to talk to my father to find out what was going on. How long would I have to be on the respirator. Was I being forced to go back to Canada (hence the packing)? Since my father was not a mind reader, he couldn’t give me the answers I so desperately needed.
Not being able to speak definitely SUCKED.
I woke up from my coma basically a quadriplegic. During the 4 weeks of unconsciousness, the doctor’s had temporarily paralyzed my lower body. This was done because I was in and out of surgery every other day and therefore the large incision on my stomach was not fully closed. The doctor’s couldn’t risk that I twitch or move and further injure the open wounds.
Since I was in a makeshift ICU, there were no call buttons. I could not even raise my hands to clap to get my nurse’s attention if I needed something. It was terrible.
The worst was when I was given IV sites on both of my hands. I am not sure why they did this, because they never ended up connecting anything to those sites. Anyway, the way they inserted the needle into BOTH of my hands was done incorrectly, and both sites started to burn badly. I could not signal the nurses, or even my father, to alert them of the pain. My face could barely register a grimace. I ended up suffering with the pain until 2 days later (yes, 2) the nurses noticed the infected areas were swollen and discoloured. It was then, finally, that they removed both IV sites.
Another unfortunate instance happened overnight when I drooped slightly in my bed. My back was in an odd position and began to hurt. I needed to be lifted back up in the bed again. Unfortunately since it was overnight, no one checked in on me. I had to spend the entire night in pain until a nurse, the next morning, noticed my weird positioning and lifted me back up.
Suddenly being unable to move SUCKED as well.
My entire existence became one long boring day. This is how I spent my days (every. single. damn. day. for 5 weeks) :
00:00 – 6:00
- I can not sleep during the night, so I stare at the clock, waiting for it to become 6 am when the nurses turn the lights on.
- The respirator I am hooked up to is huge. There is a large tube attached to my neck (a tracheotomy) and that is attached to another tube next to my face that is heated. I hate it because it makes my face sweaty and uncomfortable. I also have laboured breathing with this machine. Every single breath I take is a conscious effort, and I feel envious of others because they can breathe without struggle or even the realization of doing it. These are annoyances I will have to endure 24/7.
6:00 – 8:00
- 6 am comes and so do the lights. I am pleased as I can see the ceiling tiles and count them repeatedly. I do this for a few hours.
- In between tile counting, I tilt my head to the right to watch the nurses tend to other patients.
8:00 – 9:00
- Time for my daily sponge bath! I need two nurses to do this – one of them must roll me to my side (since I can not do this myself) and hold all of my tubes and bags out of the way so the other nurse can wash me. They are very kind during this, but I am still very embarrassed and feel very exposed.
- Squeaky clean, I am back to counting ceiling tiles.
- At random times during the day I sing made-up, happy and uplifting songs in my head about my family and hospital life. Although I know my situation is bad, I am unaware of how dire it actually is. Because of my ignorance, I remain positive and continue singing my songs.
9:00 – 12:00
- Doctors, and their medical teams, make their rounds and browse through my charts. They linger a little longer than I’d like because they usually are intrigued with my medical condition and situation. I feel like a freak on display.
- More nurses arrive to prep me for some weird procedure my doctor does to me daily. They remove a cloth bandage from my midsection, followed by a billion (or so it seems) dressings. The doctor spends the next 20 minutes pouring multi-coloured liquids into the 4 tubes I have embedded in my stomach. A nurse assists with a suction tube to remove any stray liquid. After that is completed, they redress my stomach and cover it with a cloth bandage again.
- A lady comes to mop the floors in the ICU. She is extremely friendly and flashes everyone a beautiful smile. Despite this, when she cleans around my bed, I wish that she just finishes and goes away. I want to be alone. It’s a rude thought, but in my condition, I just want to remain solitary without people gawking at my Borgness.
- Tired of counting tiles, I gaze at the bed across from mine. It is the only one in the room that has a privacy curtain. Well, it’s actually a shower curtain I saw at IKEA a few months earlier – and I almost bought it! It’s white with a bunch of funny looking animal doodles on it. When I blur my eyes, I form images from the shapes of the animals. For some weird reason, I see my father’s smile in the shower curtain. This pleases me and I smile internally, feeling comforted and loved.
- Throughout the day, nurses come by to restock my medication for my PICC line. (my father told me at one point I had 20 different medications). Feeling extreme loneliness, I try to get my nurse’s attention, but it never works and I end up alone. Always alone.
12:00 – 13:00
- My father comes to visit. He can never stay for more than an hour because other patients in the shared room routinely need privacy for different procedures. But, he has become quite a ‘regular’, and the nurses and doctors all love him. They crowd around my bed talking to him, bringing him coffee, and I feel neglected and a bit upset because I want some attention.
- My bed is next a large window with a heater underneath that is broken and stuck on the highest heat setting. My father and I are sweating profusely and a nurse brings a wet towel to put over the heater, only to have it dry in a few minutes.
- The window is then opened for fresh air and to counteract the intense heat. The temperature dips dramatically and I freeze. Sadly, I can’t express this to any nurse, so I remain a frozen mute.
- In an attempt to communicate with my father, I try to write a note. My hands shake quite a bit as a side effect from the plethora of medications I’m on. My writing is scraggly and each letter overlaps the previous one – resulting in just a bunch of scribbles. I am upset, but determined to transmit my message – to communicate in any way – but can’t. My father holds my hand to comfort me, and reassures me that it’s OK. But it’s not OK for me. Not in the slightest.
13:00 – 17:00
- I get a treat! The nurses bring another respirator to hook up to my trach, so I can practice breathing on my own. It’s portable and doesn’t have a heater, making me automatically love it. Unfortunately, after about 5-10 minutes, I start having difficulty breathing on this machine, so to my dismay, they hook me back up to that horrible, heated respirator.
- I lay listening to the classic rock radio station drifting from the nurses station nearby (there is no door, and my bed is close to it, so I can hear the radio, even though it isn’t very loud). ‘Bohemian Rhapsody‘ by Queen is a popular song and is played almost daily. To this day, whenever I hear that song, I am instantly transported back to the makeshift ICU room in the Czech Republic.
17:00 – 21:00
- A physiotherapist visits and coaches me to wiggle my toes and clench my fists. I can barely do either. I end up feeling discouraged and dread these sessions in the future.
- During the evening my temperature spikes and I develop a high fever. Unable to lower it, the staff has to resort to placing ice packs on me. Freezing, I attempt to push them off, but am unsuccessful since I can barely move my arms. I suffer through this until they remove them an hour later.
- I continue watching the clock, nurses and count ceiling tiles.
21:00 – 22:00
- Desperate for attention, I figure out a way to make my respirator beep. If I breathe in and out fast manually, it causes my respirator to go crazy and beep. The nurse comes to check on me but leaves immediately after.
- I watch the nurses tend to other patients as I gaze at the clock and then return to counting those ceiling tiles again. Oddly enough, I never seem to remember how many there are.
22:00 – 00:00
- Lights off. Snoring begins as patients fall asleep. The nursing staff thins out.
- Can’t sleep. Still sweating from the heat of my respirator.
- A nurse comes to my bed with a container. She drains something from my stomach into the container. I have no idea what it is, and can’t speak to ask. I would later find out that she was just emptying my ileostomy bag.
- I manage to slip into slumber and dream about being trapped in tubes. I wake up to find that, sadly, the dream mirrored my reality.
- I continue watching the clock and the odd nurse, waiting until 6 am when they turn the lights back on.
On some days, there is a break in my routine as I’m wheeled into another building for an MRI or CT scan. I love when there’s a change of scenery!
At the time, although bored, I never realized how monotonous my days were. I just coped with things day to day. I was aware that my situation/health wasn’t ideal, but I just dealt with it – it was like I was on auto-pilot. When I think back on those months in the Czech Republic, I am amazed that I survived the days without climbing the walls from extreme cabin fever. I could not imagine going through that again, but I know if it happened again (and it sort of did in 2013), that I will be mentally prepared to handle it – with my attitude and head held up high!
Thanks for reading. Diane
(the next 3 months of my ICU stay in Canada, and the series of events to follow, is another story for another entry).
NOTE: I don’t have ANY photos of myself during this 5 month ordeal. I was adamant that no photos were taken since I had started losing my hair and looked extremely ill. In hindsight, I regret that decision. It would have been nice to look back and compare on how far I have come since then. Meanwhile, random Google images of old-school hospitals will have to suffice for now… ;)
Oh my gosh, this entire entry took 4 days to write – not because of the content or length – but because of my chronic pain since I can’t sit at my PC for too long. Oww. :/
Hi Diane, I used to be called Mrs. Pierias there at that little school called St. Stephen’s.. I found you by serendipity on the internet and we have shared friends. You might remember my daughter Grace, also a good friend of Anne’s from that era. I had a heart attack just over a month ago and it brought me somewhat close to what you went through. I too am afraid of talking about it but can with some people,,, more to come, lots of love to you. Lorraine Toth Pierias
You are such a beautiful person Diane! Hugs.
Thank you SO much, Lindsey! ☆♡
I am amazed by your strength to persevere, and like Gui, I am so glad you were able to recover, and I was able to get to know you. Stay strong and get health. And stay positive!!!
Thanks Tom, but we knew each other before all of this!! But I suppose afterwards I was on my pc much more, therefore allowing us to discover the osm that we both possess (in abundance, mind you). :D So that is one of the few good things to come out of all of this! :) Thank you for commenting, I really appreciate it! ☆★
I love you soooooooooo…….. much my little kitten
I love you too, mama. Thank you for taking the time to read this and then comment. ♡♥
wow you been through so much honey… i never forget it but reading it in detail really makes it very real and reminds me of how strong you are and how much you been through. I am really happy I met you. I love you! and lets get healthy! xD
Thank you! This was a particularly difficult entry for me to write because I had to relive those days. But I felt that it was an important story to share.
There was much left out – which I’m sure will surface in future entries…