Someone recommended a film to me last week: “Five Feet Apart”. We put it on at the weekend on Prime not really knowing what it was as I’ve never heard of it.
It's about two teenagers with cystic fibrosis. The whole story centres on one rule that they have to stay six feet apart. Because when you have CF, the bacteria living in your lungs can be dangerous, sometimes deadly, to someone else who has it. So two people with CF typically aren't allowed to touch. The title comes from the girl deciding to steal one foot back as six feet is the rule and she wants to live at five.
It was about ten minutes in when I realised I wasn't watching a nice movie. I was watching the Hollywood version of our own hospital visits.
Both my girls have CF and they’re almost a year old. They have never had a single day without it, which means they don't actually know it's hard. To them it's just a normal day.
Let me take you through what a clinic day actually is, because I think most people hear "lung condition" and picture an inhaler, and I’m also guilty of this, but CF is such a misunderstood condition. When we were told they had it, I automatically thought of Cerebral Palsy - a completely different, unrelated condition. This shows my utter ignorance.
Outside of the everyday stuff we have to do and regular questions, we have a “clinic day” every 6-8 weeks. It used to be a 1hr 15 drive to the hospital, where we could never find parking and were running late. We’ve moved to a different hospital for their care, and now it’s about 30 mins drive. When we arrive, we don't sit in a waiting room. People with CF can't be around each other, so we're taken straight into our own room and the door stays shut.
Then it starts.
First, they get weighed and measured. In most of life you want the number on the scale to go down. In CF it's the opposite as gaining weight is winning. It means the body is absorbing food, holding the line. So I stand there willing both girls to be heavier than last time, and when they are, it’s such a relief.
Then it’s the general “how are they doing? how are they feeding?” and the long questionnaire to go through.
Then it’s the cough swabs for both, checking what’s growing in their lungs. Never nice to see them gag.
Then it’s going through their physio routines, what works and what doesn’t - we explain the girls won’t wear their masks as they just want to eat them and play with them, so now we have to do a lot of back taps (percussions) through the days.
Then it’s the meds discussions. Everything we give them every day, along with the new meds they’re starting soon which have changed the game for CF patients: they’re called modulators, and re-wire the DNA faults.
But typically, there’s around 8-9 people who come in to see us, sometimes at the same time, whilst we juggle 2 babies and their needs (boredom, too warm, hungry, irritable) whilst my wife and I are taking in copious amounts of information from everyone talking at us.
And here's the thing I keep coming back to: nobody in that room thinks any of it is remarkable. To them it's routine. To my girls it's just what you do before you're allowed to go to our post-clinic coffee and lunch date together.
I’m so grateful for the care they have, and the above is not meant to talk down on any of the team at all, but it’s the reality of overstimulation that we have to deal with and I don’t think it’s talked about enough.
The takeaway:
I spend most of my working life around people who are proud of how hard they push. Founders posting about the 5am alarm, the cold plunge, the discipline. There's an entire industry built on the romance of doing hard things on purpose.
And then I go to clinic, and I watch two almost-one-year-olds do something genuinely hard, every day, with no audience, no post, no applause, and no choice. They'll never get credit for their consistency. They don't even know it is consistency. It's just the price of the day.
It's quietly reset what the word "resilience" means to me. Real resilience isn't loud. It isn't a brand. It's mostly invisible, done by people who'd never reach for the word, who just get up and do the unglamorous thing again because the alternative was never on the table.
The girl in the film steals one foot back from the disease so it’s five feet instead of six. A tiny act of defiance dressed up as nothing.
That's the whole job, as far as I can tell. Whatever I build whether it’s the company, the money, the time bought back, it's all just me trying to steal a few feet back for them.
See you next week.
— Antonio.