To the good people in our bad healthcare system

Like others, I find myself regularly ranting about our healthcare system. And with bloody good reason. It’s slow. It’s dilapidated. It’s out-dated. It’s broken. Some of the stories you hear are not only embarrassing, but downright terrifying. The system is meant to protect us, yet we often feel at our most exposed going into a medical environment – the fear of going in with one thing and leaving with an extra three for free is a very real phenomenon.

I spend a good chunk of time in and out of hospitals and clinics with my daughter who has Cystic Fibrosis, so I’ve seen samples of the best and worst bits of the system. I’ve been abhorred at water-stained ceilings, dirty bedrails and having to carry breathing equipment up and down stairs when my daughter was moving ward for the FIFTH time during a 12-day admission. Acceptable it is not.

But I’ve also experienced much kindness and thoughtfulness from staff who are doing their best to compensate for the shitty excuse of a healthcare system they find themselves working in.

So I just wanted to take a minute to acknowledge that this bad system is also filled with some really good people. People whose kindness will stick in your mind long after the trauma is over. People who can make the most horrific experiences even 1% easier to deal with. And that 1% may just be what gets you through it.

I’ve had a couple of standout moments of kindness over the last few years – they stay in my mind, yet when I discuss healthcare, they’re not what’s on the tip of my tongue. I’ve often thought about sharing them, but have never done it. So here goes – here’s a sample of my gratitude list:

  • To the CF nurse who gave me her mobile number when my daughter was first diagnosed – I will never forget that you were prepared to let me call you at any time as I struggled through the most difficult weeks of my life. I think I only called twice (I’m sure I thought about calling twice a day!), but knowing that you were there gave me such huge peace of mind. It’s a gesture I’ll never forget.
  • To the male* nurse in A&E who found us an isolation area when my daughter was only tiny and had to come in for review. You knew me and my husband were on the edge and you hid us in a room away from everyone else. I don’t remember much about that evening but I remember you bringing in cups of water and juice for us even though you were rushed off your feet (I’m pretty sure we looked like we needed something stiffer). While I can’t bring to mind exactly what you said, your kind face and voice will stick in my head forever. I still always recognise you if you’re on duty when we have to go in. I’m sure you’ve long forgotten us in the sea of panicked faces you see daily, but your face and manner are etched in my mind forever.
  • To the ward nurse who brought me a cup of tea after a terrifying day with my daughter during her first admission. Her oxygen sats kept dropping, she needed a nasal gastro feeding tube inserted, there was a failed attempt to insert a picc line and therefore blood everywhere. Quite honestly, I was just as traumatised as she was by the end of it and I was crumbling into a million pieces. You’re not allowed hot drinks on the ward but when my daughter was finally asleep, you brought me a glorious cuppa. I hadn’t left the room in days (and you knew I wouldn’t leave to go to the canteen even though you had offered to sit with my girl) and this small gesture meant everything in that moment.
  • To the out-of-hours doctor’s receptionist who let me wait in the car with my daughter when she needed a weekend review – your willingness to call me when we were next, instead of having us sit amongst the germs in the waiting room, massively eased my anxiety. Not everyone appreciates the danger zone that is the waiting room.
  • To our own clinical nurses – some weeks I speak to you more than my own family! I know it’s your ‘job’, but kindness isn’t something that can be learned and your natural empathy and willingness to answer my two thousand questions** never goes unnoticed or unappreciated.

These may read as very small things, but emotionally, the small things are often the big things. And while we need to 100% keep shouting for better healthcare, we should also make sure that we don’t channel our frustration at those who are trying their best within the current system. So my mantra is to always be kind – always say thank you to those who are thoughtful and helpful to you and your children. Yes, you’re going through shit, but they’re probably taking shit from all angles and are trying to put a brave face on it. We’re great at giving negative feedback, but let’s give the positive feedback too. (I know not everyone deserves it, but it’s worth noticing those who do.) Kindness works in both directions and who knows, your positivity may just be the 1% that gets that person through a difficult shift.

 

*I know I shouldn’t draw attention to gender, but if I don’t your brain will probably picture a woman in this scenario? This may be wrong but it’s totally true!

**On a good day

Image from Pixabay

An ode to in-flight germaphobia

We’re off to the sun
For some family fun
But I have a secret confession…
It’s not just four of us flying,
We need space for my trying
Germ avoidance obsession.

My germaphobe is not new
But it’s also quite true
That it’s gotten a whole lot worse,
Since my daughter’s diagnosis
Of Cystic Fibrosis –
An illness that can be a curse.

I’m not going to lie
Each time that we fly
It’s not people’s faces I see…
It’s seat-numbered germs
I just can’t come to terms
With the bug fest surrounding me.

Of course my kids don’t know
That their Mum’s a psycho
I do my best cover up job…
Milton wipes in one hand
All the gel in the land
‘Die, little buggies!’ I sob!

If I hear a sneeze
An audible wheeze
Or worse, a big, fat, juicy cough…
My heart starts to sink
Someone pass me a drink
Stop world, I just want to get off!

All that recycled air
Is the ultimate scare
I’m practically shitting my knickers…
For the length of the flight
The fear is not slight
Of the kids who are coughers and lickers.

If the kids need a wee,
I can’t breathe when I see
The state of the aeroplane jacks…
‘Don’t touch a thing’
Is what I must sing
While inside I have panic attacks!

You might think that I
Should give Valium a try
Or get over myself completely…
But I’ve seen how a cold
Can do damage untold
Hospitalising my sweetie.

But we must embrace life
Despite fear and strife
My daughter, she deserves to travel,
And have fun at the pool
Show new friends that she’s cool
While I pray our luck doesn’t unravel!

So wish us well as we go
All you germaphobes know
That it’s hard to relinquish control…
But with a squirt and a wipe
I’ll manage my type
And the break will be good for the soul!

Let’s make ‘13 Reasons Why’ one good reason to talk

Like lots of people, I’ve found myself fixated by Netflix drama ‘13 Reasons Why’, binge watching when I should have been binge sleeping. The show tells the story of Hannah Baker, a high school student suffering from depression thanks to being the victim of cyber bullying, stalking, sexual assault and many other soul destroying experiences. Hannah takes her own life, leaving behind audiocassettes detailing the 13 reasons that pushed her to the edge. Each episode covers one tape side, documenting one reason (and one person) that contributed to her taking this fatal step.

Although the idea of a teenager using tape cassettes lacks real world credibility, it’s a captivating device that keeps you yearning for the ‘next side’. But it’s not an easy watch, and the show has been much criticised for glamorising suicide, with many suggesting that the idea of revenge from beyond the grave may (unintentionally) prove attractive to those in similar states of distress. On the flip side, ’13 Reasons Why’ examines really important issues facing the youth of today. It makes the audience think about how we could all do a little more to look out for each other – a message that’s of critical importance for people of every age, not just teens.

My children are young, so I don’t know how I would feel if I had teenagers and they wanted to watch it. I suspect I would insist on watching it with them, so that we could openly discuss the issues. To me, regardless of your opinion of the show, this is its one true strength – as a prompt into topics that are pretty impossible to bring up otherwise.

As a parent, it reminded me to cherish this time when my children are so young. Their minds know no dark; instead they’re filled with thoughts of ponies and football, not self-doubt and paranoia. I always know where they are. They tell me literally every thought they have (I will now stop groaning at this fact!). I am fully embraced; I am never shut out.

As a person, it makes me think about the times I have been very low myself. My daughter’s illness has occasionally brought my own mind to dark places and while I consider myself generally a very level-headed person, I’ve found these thoughts extremely hard to deal with. I’ve had panic attacks, I’ve had fleeting thoughts of ending the torturous emotional pain, I’ve cried tears that I thought would never stop. And while I’ve been able to shake myself out of it, it’s made me realise how easily a seemingly strong person could mentally slip into considering the unthinkable.

Our children have a lot more to deal with than we ever did. We didn’t grow up online. Our mistakes weren’t posted on the Internet to follow us around forever. And we didn’t have to grow up half as quickly. If we learn only one thing from this show, I think it’s that we should never dismiss how someone is feeling, whether they’re a child or an adult. Even if the trigger for low mood doesn’t seem all that serious to us, it could be everything to them. We’re all so busy trying to keep up with our chaotic lives that we forget to ask each other how we’re doing. So whether you loved ’13 Reasons Why’ or hated it, make it one good reason to ask someone how they’re doing today. Make it one good reason to remind your children that they can talk to you about anything, without worrying about getting into trouble. Make it one good reason to be kinder to people – because the truth is, you just never know what’s going on behind the façade.

Image from Netflix

The problem with business trips when your child has a chronic illness

Can it be done or are you destined for turbulence each time?

I’ve been lucky enough to travel a fair bit with work over the years. Shooting tea ads in Thailand, beer ads in New Zealand, chocolate ads in Prague…you name it, I’ve done it. It was always one of my favourite things about my career as an advertising copywriter. And why wouldn’t it be!

Of course it got more challenging when I had my first child, but the recession had also hit, so a reduction in foreign shoots coincided with those hands-on first years. That made it seem easy enough to juggle. Fast forward to having a child with Cystic Fibrosis, and the thing I once loved has turned into at best, a preparation marathon, and at worst, an admission to hospital while you’re away. This is the most soul-destroying feeling of all time.

I’ve had the spectrum of travel tales since my daughter was born, each one a reminder of just how much of a bitch CF is for everyone involved.

Eva’s first hospitalisation came over Christmas when she was just two years’ old. She had been incredibly well up to that, so it was a bolt-out-of-the-blue reminder that CF could turn everything upside down at any time. I was scheduled to go to a TV shoot in South Africa in the New Year – I obviously pulled out and my employers expected me to behave no differently. They were empathetic, understanding and everything I hoped they would be in the circumstances. But this was the beginning of the compatibility issues – could having a career in advertising and having a child with Cystic Fibrosis ever peacefully co-exist?

To test my nerves further, this first hospitalisation and travel cancellation came just after I had handed in my notice to move on to another agency. I had been managing well and when the headhunt came knocking, I decided I shouldn’t let my daughter’s CF hold me or my family back. Of course I could still progress the career ladder. Of course I could earn more money to keep us comfortable. So I said yes. Brave or stupid? Who knows!

Either way, CF decided we deserved another smack in the mouth and one month into my new employment, the unthinkable happened. I was due to present at a meeting in Rotterdam, my first time representing my new agency, and Eva took ill a few days before the trip. The morning of my flight, I knew in the pit of my stomach that she was going under and would be hospitalised while I was away. Bear in mind I was going to be away for one night. ONE NIGHT. That’s how quickly a child with CF can go down.

It was my first month working there and my first business trip. I couldn’t pull out two hours before the flight – how could I? I had been up all night nursing my daughter and I dragged my bleary-eyed and insanely worried and emotional body to the airport. I flicked the necessary switch and pulled off my part of a three-hour session with a global client. But afterwards, I didn’t feel proud of myself for being able to hold it together. I felt like shit. Because long term, no one will ever remember that meeting except me. I’ll remember what an awful mother I felt like during every single minute of it. And when I checked my phone as we left the client’s office, the inevitable had happened and Eva was in hospital on oxygen. I did what I had to do that day, but if it happened again, I’m pretty sure I wouldn’t get on the flight regardless of the consequences. (By the way, this employer has also been incredibly kind to us.)

I’ve had a few short trips since, and thankfully all has gone well. I’m just home from a two-day work trip where I got to judge at the prestigious D&AD Awards, and again it went perfectly. It does happen! My daughter is in good health and I got to travel and remember the me that I was before CF started demanding attention.

But the problem is that each time there’s a trip, the turmoil is huge as you don’t know what plans CF has for your trip duration.

So what do you do?

Do you resign yourself to career and CF incompatibility issues and just give it up? But if you do this, are you teaching your child that CF is in charge? That we need to limit ourselves because of it? That’s certainly not the narrative I want running around her head. I want her to grab life and pursue it with every ounce of energy she has.

But if you keep up your career, are you teaching your child that work comes before her health? That you wouldn’t make sacrifices for her? Which couldn’t be further from the truth.

I don’t have the balance. I don’t have the answer.

And perhaps I never will.

In the mean time, I guess I’ll just keep winging it.

Image from Pixabay

Why it’s hard to be in the minority of the minority

Last week was an historic and monumental one for the Cystic Fibrosis Community – after over 10 months of relentless campaigning, a deal on the breakthrough drug Orkambi was finally reached.

The deal means that around 600 people with the ‘double delta’ version of this life-limiting condition will get access to a drug that has been shown to reduce the time spent in hospital, reduce the number of exacerbations, improve weight and lung function and generally offer a much better quality of life. A life with more promise. A life with more hope. A life more normal. A life!

I could not be happier for the patients and families who can now put the uncertainty behind them and look to the future without being crippled with fear. I campaigned heartily alongside them and I’m bursting with pride at what the community has achieved. We may be small in numbers but we’re massive in heart and determination. We are the definition of small but mighty.

However, I also have to acknowledge the anti-climax I’m feeling on a personal level. I put so much time into running #YesOrkambi online that I guess it was a distraction from the reality of my own daughter not being eligible for the drug. So despite myself, my heart feels devastated. A devastation that I don’t want the success to be tainted with but that it’s hard to shake off. Generally I’m still devastated that my daughter is unlucky enough to be in the minority of people born with Cystic Fibrosis. But specifically I’m devastated that she’s unlucky enough to be in the minority of CF patients that neither wonder drug (Orkambi or Kalydeco) will treat.

There is still 30% of the CF Community without a drug available to treat the underlying cause of the illness and I worry that they will be forgotten about in the hype.

PLEASE don’t get me wrong, this deal is as good as it could be at this point in time as it also includes any pipeline drugs that might come to market from Vertex (the pharmaceutical company) over the next ten years. This is so important as it means that breakthroughs in that time won’t have to be fought for in a soul-destroying circus like the one we’ve just lived through. This means we’ve won a bigger fight and a more important one. We won the fight that is the PRINCIPLE of access to life-changing, high tech medication. This is landmark. This is crucial for more than this one patient group. This is everything.

Orkambi long press 3

And without this step, there would be no next step.
There would be no next drugs.

BUT it’s still hard to be in the minority. To be in the group that’s still fiercely watching clinical trials, waiting for a breakthrough for their own child’s rare CF genetics.

Am I jealous? No.
Am I bitter? No.
But I am a little sad.

The heart will feel what it feels no matter what the head tells it. So rather than put a front on and pretend those mixed emotions don’t exist, I’m acknowledging them in the hope of dealing with them and moving on, as this is a good news story for everyone, not just those who will immediately benefit.

I’ve cried so much in the last week and most of the time I can’t even tell if the tears are happy or sad. In truth, they’re a mix of every feeling imaginable. I sense that we are living through a massive moment in history, the beginning of what will hopefully be a golden era in medicine. But I’ve been listening to my daughter cough for 6 months solid, so it’s hard to not feel impatient when the day-to-day is sometimes so challenging.

Yet I also feel I have no right to be sad. What about those families who have already lost children or other family members to this unforgiving disease? For them it is the ultimate bittersweet and there is no ‘maybe our time will come’. Science didn’t come in time for them and that must be impossible to live with emotionally. I admire their strength and positivity in fighting for this next generation. We still have a maybe, and a very real and large maybe at that. So in the words of a certain songstress, I need to shake it off. I need to stop thinking about our miracle that feels painfully close yet still so painfully out of reach. I need to focus on keeping my daughter as well as she can be, so that WHEN her breakthrough comes, she is ready, able and well enough to embrace it with both arms. I need to channel that feeling of hope. Just hurry the f*** up already!!

Illustration courtesy of the lovely Olivia Golden

 

 

At what age will I grow out of co-sleeping?

Is my daughter addicted to co-sleeping, or is it actually me?

In most houses, parents can’t wait for their children to grow out of the love of co-sleeping. They long to stop clinging perilously to that couple of inches at the edge of the bed, while a little person holds the rest of it hostage. But in our house, I think it might be me that’s addicted to the midnight cuddles.

My daughter has Cystic Fibrosis, which kind of gives me an excuse, as I can monitor her breathing when she’s close to me. She sometimes wakes coughing and I’m there to comfort her and tap her back to help move whatever mucus is caught. And I know if something is coming on her before she even does – the slightest change in her breathing pattern and I’m on it. So I can make some pretty convincing points as to why it’s ok that I haven’t nipped it in the bud. But aside from reasoned arguments, truth be told, I actually just love it.

You see my daughter is 4 going on 40, with a mop of delicious curls and a cheeky smile that would send the hardest heart into melt mode. She sometimes giggles in her sleep. She usually sleeps with one eye half open (total FOMO). She sometimes wallops me in the face mid-dream. But every single time she wakes up, be it 4am or 7am, she flings her little arms around me and says ‘Mammy, I love you’. And I am complete and utter mush.

I’d probably be tougher on the issue if she was overly needy or dependent during her waking hours, as she obviously needs to flourish as her own little person. But she’s not needy in the slightest. She is beyond able to stand on her own two feet. She jumps into the middle of company. She is happy to entertain herself if her brother is not around to play with. She has a grasp of her own medication and what’s needed when. She is 100% happy and confident in her own skin. So much so that I could learn a thing or two from her!

I know that any day now she’ll turn around and say she doesn’t need me at night anymore and I’ll wince at how grown up she’s getting. So until then, I’m taking every single cuddle I can get. She looks at me like I am her world and she is most definitely mine. Why would I want to break up something so special?

My husband sometimes teases me that myself and the kids are so ‘Disney’. And while I wish I could make the rest of her life like a Disney movie, I can’t. My daughter is going to have tough challenges on the road ahead. What I can do though, is reassure her that she has 24-hour protection in the arms of her Mother. And when the cosying up together ends, I’m sure the memories of these precious moments will comfort me for the rest of my life. She’s my last baby and her cuddles are my drug. I’m high on love, comforted by curls and at peace with my parenting choice. I don’t know what age she’ll grow out of co-sleeping at. But I suspect it will be long before me.

 

Calling Bullshit!

A few weeks ago I wrote an article exclusively for The M Word, titled ‘Calling Bullshit on ‘Special Children are only sent to Special Parents’. It felt really good to get it out of my system! And it turns out I wasn’t the only one who had been tolerating these kinds of phrases while silently screaming on the inside. If you missed the post, have a read and see if you agree:

http://themword.ie/calling-bullshit-special-children-sent-special-parents/

The article really struck a nerve and is currently at over 20,000 shares. It gained such traction that The M Word asked me to write a follow-up piece. You write these things thinking no one is really paying attention, but it turns out, sometimes you’re far from alone in your feelings.

If you missed the follow-up, catch it here:

http://themword.ie/special-reaction-calling-bullshit-special-parents/

New article tomorrow.

Thanks for reading,
Bernie x