Dear Red Wine,
Today I am writing because I really need to express my thoughts on ‘4 Walls Syndrome’.
The term ‘4 Walls Syndrome’ has only recently been applied to describe a particular condition. However, the phrase has been in existence for decades. Let me firstly explain my perceptions of the origins of phrase and then I will move onto the condition it describes (in my best David Attenborough voice).
Originally the phrase was heard in a Cold Chisel song …. ‘they are calling time for exercise, round her majesty’s hotel, the maid’ll hose the room out, when I’m gone, I never knew such luxury, before my verdict fell, four walls, washbasin, prison bed.” Cold Chisel were so close, but the lyrics should have said “the nurse’ll hose the room out, when I’m gone, I never knew such isolation, before a CF diagnosis fell, four walls, washbasin, hospital bed.”
When you are in hospital as a CF parent you are totally and utterly focused on doing whatever it takes to kick CF in butt …. to be able to get your child to breathe. Nothing else matters or exists or even registers on your radar. It becomes your way of life, your philosophy, who you are, it feels safe and secure … it consumes you and defines you. So what happens when the day comes and your child is discharged from hospital ... you have to deal with ‘4 Walls Syndrome’.
‘4 Walls Syndrome’ has stages.
Stage 1: You walk out of the hospital and get in your car to drive home. Because you haven’t driven a car for a while and your mind has not thought of anything except CF … the simple task of driving a car scares the poop out of you and many other drivers on the road. Tip – have spare clean undies on hand to lend other drives you scare on the way home.
Stage 2: You arrive home to your house and immediately sterilise and scrub every surface with the most toxic cleaning chemical you can find (yes, even ‘greenies’ like me do this). You declare war on every hint of bacteria or fungi in and around your habitat (home) to make it ‘safe.’ Tip – nukes and napalm are most effective.
Stage 3: You realise that you have to start doing ‘normal life’ again. So you attempt to go to work. You arrive 1.5 hours late, sterilise and scrub your work space and sit at your desk unable to remember what it is that you actually do for a job. You then have to leave early because you tried to eat your lunch at your desk … unfortunately you have forgotten how to use a fork and hold a bowl at the same time. This results in a broken fork, smashed bowl, the whole work place running to see if you are ok and a massive clean-up effort because there is broken porcelain and green chicken curry EVERYWHERE. So you go home early (only after noticing that the green chicken curry is the same colour as your CF child’s mucous). Tip – Don’t worry about the looks you get from co-workers when you rock up to work wearing a face shield, full body protection suit and latex gloves. Tell them you have just been away to somewhere exotic and it’s all the fashion there (it’s true!).
Stage 4: There’s no food in your house and you realise you have to go to the shop. EEEEEKKKKK!!!! The shop is filled with people sneezing and coughing and bacteria EVERYWHERE!!!! You hyperventilate and ask a friend to get you food (after that friend goes through a forensic examination to ensure they do not carry any bacteria, fungi or viruses). Tip – it’s a bit silly going to a shop at this stage anyway, because you are still unable to remember how to count money or cross the road.
Stage 5: Your friends and family are concerned and want to come and visit you. Which is fine, as long as they undergo a 3 week quarantine and have blood tests and a doctors certificate to say they are not infected with any virus, bacteria or fungi before visiting. Tip - much easier to phone them.
Stage 6: Non-compliance with treatment. The medications taste like paint. They make you vomit and give you insomnia. Every day, all day … every day … treatment … treatment … treatment … the treatment is making you feel sicker than the CF … hang on, epiphany … I am not actually the one with CF … how amazing my CF daughter must be to cope with all of this! Tip – get someone (with infection clearance and approval) to get you wine. That will help.
Stage 7: Maybe getting out of the house will help. So you go for a drive in your car (which has been sterilised). Unfortunately the police pull you over and give you a fine for driving an unregistered vehicle (because your rego was due when your CF child was in hospital and you forgot to pay it). Tip – carry a medical certificate on you if you go out of the house so you can prove that your daughter has a serious life threatening chronic illness … because otherwise no one believes you (as those with CF look healthy). The alternative is to put dark eye makeup and fake blood on your CF child before leaving the house so that they actually look like their airways were collapsing only a couple of weeks ago.
Stage 8: You give in and just stay at home inside your ‘4 walls’ and deal with it. Hopefully it will be over in a couple of months and you can get back to your normal life and your child’s usual treatment regime for a little while until the next CF crisis happens. Tip - More wine, surrounding yourself with awesome positive friends, laughing hysterically at your life and rambling on to random people you don’t know in public places helps.
Four walls … washbasin … hospital bed …..
PS. An acknowledgement is needed - The term ‘4 walls syndrome’ was coined by my awesome CF friends, Leelee and Jane. Congrats to them on their contribution to language and literature and thank for letting me borrow your joke and write about it.
IMAGE: Evie, CF warrior, in her ‘4 walls’ in hospital.
Sonia is a single mum with two daughters who she loves and adores. Her oldest daughter has Cystic Fibrosis. Sonia works in a high level role at a very fancy organisation, makes costumes for school presentations at 10 pm the night before, is a proficient multi-tasker (she can do physio, weird yoga poses, order medication on the phone, sort out a sibling rivalry issue, sip a red wine and burn dinner all at once). Sonia doesn’t believe in homework, reading school notes, turning up on time, using pegs to hang the washing out or paying bills by their due date. Her greatest achievement in life, apart from her two beautiful daughters, was being able to sleep 8 hours straight without being woken up to deal with a lost teddy bear / kinked feeding tube / crocodile under the bed / diabetic low way back in 2004. Sonia does enjoy a red wine in moderation, but contrary to her blogs, doesn’t recommend drinking too much of it.