This week I entered an Intensive Care Unit for the first time in my life, as a result of my Mum fighting for her life. Being on an Intensive Care Unit was a profoundly moving experience. There were a number of young people on this ward, who were intubated and being kept alive by machines. They did not seem to have names, faces or identities. After seeing this, I wanted to somehow share the voices of young people who are in Intensive Care.
This blog has a very personal perspective.
Cassie Robson is 20 years old. I am lucky enough to count her as one of my dearest friends. She is one of the most intelligent people I know, with a sense of humour to rival the driest of comedians. Cassie also has the degenerative condition Muscular Dystrophy. When Cassie was 16, she went into Complete Respiratory Failure, as a result of complications from her MD. She spent six entire weeks in ICU, with five of those spent being intubated on a ventilator. Incredibly, Cass was conscious for the majority of this time, due to her not fighting the tube. The photos included in this blog are of Cass’s time spent fighting in Intensive Care. I finish this blog with a quote of Cass’s.
All lyrics are from ‘Wake me up’ by Aviici. Please listen to the song as you read; I feel the lyrics and sense of hope are moving.
A huge thanks to Cassie Robson for her courage and strength in making this story real.
Did you know that hearing is the last sense to go? I didn’t either. They say that when all other senses are lost, above all, your hearing remains. I never knew what I thought about such things. If I were honest with you, I would have told you I thought it to be another tall story, just like the story about the Rogue Beagle that the men in my local pub enjoy telling to all the tourists and the gullible alike.
I have never been one to admit that I am wrong. I am young after all. Admission of failure and guilt is a language which we simply cannot twist around our vodka bitten lips.
I’m not sure who They are. We always talk about Them, as if They have all the answers. If I did know where to find Them, I would sit Them down. I would ask Them how They knew that hearing was the last of the six senses to remain, when all else is lost.
And most of all I would ask them if they knew.
I would ask them if they knew that beneath it all, I am still here.
Feeling my way through the darkness
Guided by a beating heart
I can’t tell where the journey will end
But I know where to start
You cannot see me.
Because you are looking at the tubes and the machines and the wires and the drains and the monitors and you can’t even pause to catch your breath. Because there is too much.
At first, you aren’t even sure if I am real, if I am even human at all. I could be male, or I could be female. I could be fifteen or I could be twenty five. I could be olive rich or I could be Thai. I could be wide eyes and full lips or I could be Jane. I could be the HD upon the Uni assignment, or I could be kicking the carpet in the detention office. I could be the light in the room or the paper upon the wall.
When you see me, the possibilities of my identity are infinite.
Because you cannot see me.
I know what you see. You see the Endotracheal tube. This is what they inserted down my throat into my trachea to keep me breathing when my body failed to do so. You can see the ventilator, the machine which now inspires and expires without emotion. There are no held breaths of excitement, no gasp between the sheets. It is measured, cold.
You see the nasogastric tube, which is inserted into my nose and down my throat into my stomach. When you go to the cafeteria, I do not follow. This is now my bread and my butter.
You see the urinary catheter. Each hour the vultures will swarm around my limp body, and gossip about the shades and volume of my own urine. Dignity is long but forgotten.
You will see the twelve lead ECG, blood pressure cuff and pulse oximiter peppered across my chest and limbs. Here a nurse will sit for twelve hours watching every rise and fall, every twist and every turn. They hold their breath.
You will see the drains, catheters, cannulas and intravenous lines snaking from every available crook and creek. They will take and they will give, drain and fill their every whim.
This is what you see in my place.
They tell me I’m too young to understand
They say I’m caught up in a dream
Life will pass me by if I don’t open my eyes
Well that’s fine by me
Anyone who claims that the young are too understand do not themselves understand. The young are a magnet to tragedy in its truest forms. We are invincible of course, it will never happen to us. Until of course it does.
And then we understand it.
We understand it when we are lying in the remains of our best friends, caught in the remains of our Mitsubishi. We understand that we never needed those extra ten kilometres.
We understand it in the second before our heads hit the pavement, never even having time to register the drunken punch which came from behind. We understand that they never needed a reason to do it.
We understand it when we face the greatest betrayal of all. We understand it when we become medical tragedies, and develop Chapter Nine of the book of Rare Diseases. We understand that we never saw it coming.
I am caught in a dream, a life or death purgatory. I float somewhere between here and there, and most days I seem to be closer to the latter. They beg me to stay, and they give me permission to go. They are desperate and they are forgiving, and finally in their love they threaten.
If you don’t open your eyes.
You have to open your eyes.
I tried carrying the weight of the world
But I only have two hands
I hope I get the chance to travel the world
But I don’t have any plans
Time is different now. Here time has its own concepts, its own rules, and its own desires. There is no next week, and there is no tomorrow. There is no ‘in an hour’ and there is no ‘just wait a minute’. There isn’t even ‘just hang on a second’.
You do not wait for tomorrow, and you do not plan for next year. It is now, or it is not.
And I wonder why I was ever so naive as to believe any differently.
If only I hadn’t been so busy. If only I had put down the scissors from the scrapbook of dreams, and packed my case instead. Instead of planning our adventures over a beer and drinking to someday, we should have toasted to the airport and its characters.
Why didn’t I just go?
So wake me up when it’s all over
When I’m wiser and I’m older
All this time I was finding myself
And I didn’t know I was lost
You cannot see me.
So instead I will show you.
I am an economics student and I am a plumbing apprentice. I am a cashier at the supermarket and I am working in the family business.
I am the daughter who brings you coffee and I am the son who doesn’t clean his bedroom. I am the brother who hits on your friends and I am the sister who steals your clothes . I am the grandson who mows your lawns and the granddaughter who comes for dinner. I am the niece who loves to sing and I am the nephew who cannot . I am your boyfriend who first kissed you in the bar, and I am your girlfriend who dances to every song. I am your fantasy fling and I am your fiancée and future . I am your best friend with whom your secrets lie, and the colleague who steals your coffee cup.
Wish that I could stay forever this young
Not afraid to close my eyes
Life’s a game made for everyone
And love is the prize
I blink in every photograph, and whisper my dreams to my golden retriever. I dream of something more, and accept a little less. I have an unpaid parking fine on my bedroom floor, and I eat McDonald’s once a week. I am scared of being left alone, and never liked the taste of vodka.
I have dreams and I have fears. I have loved and I have lost.
So when you see me, do not flinch and do not weep. Do not scream and do not sob. Do not turn and do not run.
Come. Take a seat and take your place next to me. Stroke your fingertips against mine. Tell me your story. Try to hear mine.
Hear that I took the risk in the game known as life, and know that I may not win.
But know that I may.
Know that I may be granted my wish, and that I may not.
Most of all, know that above all, love is the reason, the how, the why and the prize.
Know that beneath it all.
I am here.
“…honestly I have never been sure about my identity. What they couldn’t see was the fact that I was not intellectually delayed, was intelligent and wanted to be included in decisions and meetings…(that) I enjoyed, my TV shows(only one TV in ICU). My life then revolved around my school work, I had a major legal assignment due at the time. I fear being stuck in a room unable to get help, and I dream of being doctor, although that will never happen. I enjoy playing powerchair soccer, or at least practicing as I haven’t found a team yet. (If someone is in ICU…)” …talk to me about what is going on, listen to me when i say something is wrong, i know my body better than you and so know when something isn’t right, and for god’s sake don’t talk to me like i am 5, i have a brain that is intellectually fine.”
“See the person behind the tubes”
-Cassie Robson, aged 20