Meet CF Mammy.

CF Mammy is 39 years young.

She just looks flipping ancient because she has just gone through a 2-week stay in hell hospital with her daughter.

CF Mammy is smiling and positive on the outside, but CF Mammy is being fucking eaten alive on the inside.

CF Mammy does not want to call an ambulance again.
CF Mammy does not want an emergency call to her daughter’s hospital room again.
CF Mammy does not want to see her daughter struggle to breathe like that again.

But CF Mammy knows that her not wanting these things doesn’t matter a fuck.

Because CF is an absolute asshole.

An asshole that turns a common cold into an ambulance ride and 13 nights in Hotel Temple Street, where pinging monitor alarms become engraved on your fucking soul.

So please forgive CF Mammy if she hears you sniffle or cough and proceeds to pick up her child and run the fuck away from you as if you were a flesh-eating monster.

CF Mammy is not doing this because she’s a fucking weirdo.

She is doing this because she desperately wants to keep her child alive and she feels like she and her child spend their lives dodging snot bullets.

You see your ‘touch of a cold’ is my child’s ‘touch of collapsed airways’ / ‘touch of a giant fucking mucus plug’ / ‘touch of pneumonia’, or perhaps a trio of all of the above to keep things extra terrifying.

CF Mammy finds it extremely tempting to never leave the house. To not let her child go to school. Or the shop. Or the anywhere. Ever.

But CF Mammy knows that this is not practical and that her child would hate her for it. And she really loves that she loves her a lot.

So CF Mammy is trying her best to educate people instead.

By begging them to think of others and cover their coughs and sneezes.

Please.

For the love of God.

For the love of my child.

For the love of your conscience.

For the love of anything and everything.

If you don’t have a tissue, sneeze or cough directly into your elbow (‘catch it’).

If you do have a tissue, sneeze or cough into that, bin it and wash your hands (‘catch it, bin it and kill it’.

CF Mammy implores you to teach your children to do the same.

CF Mammy is not delusional.

She knows it’s impossible to protect her child from all germs.

But it’s not impossible to protect her from some, with a little help from you.

If you are lucky enough to have children in the full of their health, CF Mammy implores you to think of those children that have a battle on their hands every day of the week.

You might think there’s nothing you can do to help.

But there is.

Your hygiene helps.

Everyone’s hygiene helps.

CF Mammy thanks you from the bottom of her full-of-love but full-of-fear heart.

CF Mammy also apologises for the cursing, but this is so fucking important.

 

Photo by Edu Carvalho from Pexels

 

I put on my big girl pants yesterday and went to the screening of ‘Five Feet Apart’, which is on general release in Ireland from this Friday, April  5^th. The opportunity to see it was last minute, which helped. If I had had the opportunity to think about it too much, I probably would have bottled it and not gone.

I’m pretty sure you all know the gist of the story by now – two teenagers with CF are in hospital at the same time and sparks begin to fly. Stella, our treatment compliant and awareness-raising female lead, is awaiting a lung transplant, while her much less compliant love interest, Will, is on a trial to attempt to treat his aggressive b cepacia infection. They know they are a danger to each other (and he is a particular danger to her) but they’re so sick of a life of limitations, that intense attraction and temporary happiness begin to outweigh risk and its life-threatening implications. There’s romance and there’s wrongmance, and we all know what category this falls into.

People with Cystic Fibrosis must stay six feet apart in the interests of infection control, but Stella and Will decide to steal back one foot, in defiance at all that CF has stolen from them.

If it’s going to drive you nuts that there are inaccuracies in the film around CF, then don’t go and see it. The hit and miss use of masks is questionable, items are passed from patient to patient, oxygen nasal cannulas are flung around on all kinds of surfaces (shudder), the amount of coughing is not representative of people who are at such advanced stages, and a patient with CF is hosting a secret party one minute and passes away from pneumothorax the next. The film is also extremely pessimistic in terms of the outlook for both lung transplant patients and those who culture b cepacia. The hospital has a swimming pool and patients often find themselves up on the roof overlooking the city. Our hospital doesn’t even have en suites for our kids most of the time, so it’s fair to say that you need to suspend reality more than a little to watch this!

However, we must consider that CF is so complicated that no movie is going to be able to represent the intricacies in a way that is entirely satisfying to those of us on the inside. The experience also varies so much from person to person and family to family. We must also remember that the point of the movie is not about educating the audience on every single aspect of CF. A film like this can only ever offer broad strokes and a general glimpse into a life more complicated. It’s in this intimate glimpse into the hard times that ‘Five Feet Apart’ succeeds.

While it’s a film with representational flaws, it’s also a film that’s full of heart. I found myself much more captivated by the emotional insights than anything else. The devastation at missing another trip with your friends, the frustration at not being allowed contact with the only people who truly understand you, the fear of surgery, the daunting schedule of treatments, the fear of losing a well family member, the germaphobia.

As a parent of a young child with Cystic Fibrosis, I very much see me and my daughter as a team. So one thing that startled me in the movie was the almost non-existent role of the parents. While this was of course done to focus you on the doomed relationship that mattered to the storyline, it really got me thinking. My daughter is her own person and my role and influence will diminish over time. So instead of fixating on the ins and outs of the story on the screen, perhaps this film is an excellent prompt to think about the importance of instilling independence, positivity and good judgement in our children with CF.

I watched so many scenes with all of my insides screaming ‘Don’t do it!!’ If I ever saw Eva chatting in the gym with another CF patient, I think I would explode on the spot. To me, for my child, six feet isn’t enough!

But my reaction (and the intensity of the relationships on screen) made me realise that so many other people are going to have an influence on my daughter as she grows. I won’t always know where she is and what she is doing. I won’t always be making the judgement calls for her. It got me thinking that my job is not as simple as protecting her today. My job is to empower her with knowledge, to build her confidence, to teach her to advocate for herself and to give her an appreciation for life. To help her, in the words of Stella, ‘not to live for her treatments but to do her treatments to live’.

‘Five Feet Apart’ has been accused of being sanitised and glamorised. And to an extent, it is. People have also said that if you really want to know about CF, ask someone who has it instead of watching this. But without watching something like this, will people ever actually ask? While the film may not be perfect, it IS a conversation starter. And maybe that is enough.

Image from CBS Films.