The Triple-Combination Modulator: Through the Trikafta noise…

The Triple-Combination Modulator: Through the Trikafta noise…

It isn’t often that Cystic Fibrosis gets to hit front-page news, but for a while in 2019, we did. After the production of three modulators with low success rates came the triple-combination modulator that would revolutionise our world; otherwise known as Trikafta in the US, or in Europe as Kaftrio. In laymen’s terms, the last recipe was… mix most of’em together, slap another one on top, and call it a day. And it rallied the crowds. 

Whether it be Trikafta or Kaftrio, I hope your faith in this deity is strong, as my belief in it crumbled a little with every bit of research I did to write this piece. If you haven’t heard about it, you’ve been living under a rock. And if you have heard about it, chances are you are of two minds. Either you believe this is what will save the CF community from burning in the fiery pits of lung failure. Or, you see it as a legend that’s quickly becoming a tall tale.

About Trikafta…

The hype behind this therapy is pretty simple; it’s the first time we have had pills that correct the basic functions of the CFTR protein (the faulty gene that causes Cystic Fibrosis in the first place). Trikafta or Kaftrio, depending on where you are in the world, is that triple-combination modulator.

It is this incredibly non-invasive and – supposedly – very efficient treatment, that almost regenerates the whole body, before giving it a newfound breath. So far, it’s been shown that as soon as the magic pills are stopped the functional fantasy world slips away. Definitely becoming a treatment and not a cure.

The science: there are two morning pills that contain elexacaftor, ivacaftor and tezacaftor; binding agents that work with the faulty protein to help it get to the top of the cell membrane. Correcting this issue is a big deal, as it plagues a big percentage of the CF population. The evening pill and second part of this treatment is an ivacaftor pill, otherwise known as Kalydeco. What this molecule does is help the CFTR protein stay open longer at the surface. 

Diagram of the faulty CFTR (before Trikafta) that causes Cystic Fibrosis and the issues it therefore causes.
going from this…
Diagram to show the effects of the triple-combination modulator that is Trikafta on the faulty CF protein. Showing it brings the protein up and keeps it open.
… to this.

drawings by Tristan Castella

All of this means that, technically, this drug wouldn’t just affect one part of the body. But instead, it would target the source of the problem that created this incredible domino effect of sickness. It promises a lot, but can’t assure much.

Interestingly, Kalydeco was the first modulator, created back in 2012. However, it only helped 6% of the CF population so it did not go very far. And now, it’s having a comeback as the VIP. Since 2012 there was the creation of Orkambi in 2015, and the creation of Symbdeko in 2018, before this final revolution that seems to have stolen the spotlight. 

And that is why I am curious.

I resisted both Orkambi and Symbdeko but felt somewhat childlike and scrutinised when I hesitated to accept Kaftrio. In my doctor’s eyes, there was truly a sense that the bad outcomes were a 1 in a million chance. Perhaps it had been the eight years of experience with modulators, or maybe it was my doctor’s lack of patience in waiting for me to be ready for this logical next step that was quickly becoming the status quo.

It’s true, my objections are because I worry about the worst-case scenarios… but a lot of my worries actually are about the worst-case scenarios doctors haven’t dealt with or even met yet. The fact is, we still know so little about it.

What You Can Hope To Change…

Welcome to the purge. CF Style.

Or maybe not. Who knows. Because that’s how medicine works nowadays. 

But more specifically; this triple-combination modulator targets to change the mucus we create. Turning something sticky into something friendlier to the body. Many people have said they have had a purge-like episode that lasted anything between hours to weeks, where they coughed or snorted all the excess shit that’s been holding them back. 

Definitely just a transitional moment however, before being able to breathe as if our health was simply hiding behind a cloak of invisibility

It is difficult to quantify or even pinpoint exactly where this medication could change our bodies and consequently, our lives. And that is because of our illness structure itself. CF is a domino effect of symptoms and collateral damage from years of intense medication mixed with genuine dysfunction. But the glimmer of hope that is Trikafta, is that it changes our molecular function. It’s not gene therapy – the utopic cure – but CFTR modulators are treatments that target the root problem. 

So, even if it isn’t a cure, it has the potential to help a multitude of problems. What is scary about this medication is exactly that; the fact that it could effect anything and everything. 

For CFers, our primary battle is with this stuffy mucus that ends up clogging our bodies over time. So, if this medication allows a different transaction to happen between our cells, then that mucus itself could change. I’m not a doctor, but in my humble opinion, I don’t think we realise how much this medicine will change our bodies. 

The point is; this treatment is an opportunity. Not a miracle.

Triple-Combination Politics…

The politics behind Trikafta are an important part of this story because I wanted to note how challenging it was to be someone who wasn’t convinced and asked a few too many questions in face of this life-changing event.

In preparation for this post, I did some research and found other people’s testimonies about how they had lived this change in colour. That’s when I realised I wasn’t alone in my worries. But more importantly, I found that I hadn’t been the only one to be shut down either… by both doctors and other CFers. It broke my heart to see there wasn’t a safe space to express our worries about gambling with the little bit of health we had left… all of this simply because propaganda is powerful.

photo by Shelagh Murphy

I kept getting angrier and angrier with every new bit of reading I found on Kaftrio. It was portrayed as this full-proof make-over pill that made us normal. And that is just wrong on so many levels. Headlines read the words “game-changer”, “transformative”, “life-changing” and even “miracle”. Which, just to be clear, is laughable. Any doctor knows that uses the word miracle is just sensationalism. They know that that word has no hold in science or medicine. And to say something like that to a community of kids that have been dying since birth is gaslighting if even remotely untrue. 

and it is untrue

Trikafta only has a slightly higher success rate than previous modulator and the possible side effects are far greater. Far darker too. So, why such noise? 

Because this modulator has the biggest reach in our community. And for a small community divided by over 2,000 mutations, finding a united treatment is a big deal. Regardless of the treatment itself. And that is what we should remember.

Miracle Defined

The average lung increase (FEV1 in our charts) with this medication is around 15%, from what I could find online. Let’s unpack why that is not life-changing.

The fact that the average is that low is surprising because there are some patients whose lung function goes up by 40- 50%. So let’s just take a second, to consider how many people only had a 5% or less FEV1 increase – that’s if we’re not even mentioning the people that didn’t see a change at all – to balance out the ones who had such a remarkable jump and made such noise. 

The second reason why this medicine does not qualify as a game-changer is that despite supposedly resolving our lung issues, the medication comes with clear instructions not to stop respiratory therapies. It says it is up to our personal physicians to make that choice after seeing what happens. So, just to put it in black and white, this treatment is just another pill in my pillbox. The way the treatment is managed and handed out is not in a way to replace already existing therapies.

Another interesting thing I came across was that a specific possible side effect of Kaftrio was “upper respiratory infection”. I found this shocking and surprising seeing as the point of this medication was to prevent said infections. Doctors claim this is just medical talk for little colds. But I wasn’t convinced… so, getting a little bit more curious, I checked on the other modulators. Assuming that America always listed an enormous list of side effects as legal offense, I was expecting to find it on the other modulators. I only found it on the Kalydeco list; which makes sense considering we are talking about Ivacaftor and it is also in Trikafta. I’ve been fighting colds turned lung infections since birth naturally, and now I will be fighting them because of my medication? Fab.

How is this life-changing again?

The Unheard Truths.

Amidst all this golden smoke, we have lost important bits and pieces of the story.

Patients are noticing more creative side effects, that either wouldn’t typically be associated to CF issues…

despite there being so many options to choose from

… or symptoms that aren’t obviously linked to what is known about Kaftrio. And when spoken of, there seems to be a strong wave of denialism within our care. So much so, our Facebook group created a poll to keep track of how often and how many things were being brought up.  

I haven’t been around the Facebook group for long, but it’s the first time I’ve seen a poll to map what’s happening to us medically. Or more importantly what’s being pushed aside.

The leaflet that came with my Kaftrio has an impressive warning list already, but in this post, I also wanted to bring out of hiding the list the CF community created. The ones who are on Facebook at least. It deserves to be heard by people who don’t have CF. As we all tether on that line of hypochondria, however, I will be grouping the poll choices together to make it easier to understand. I think showing the truth about our erratic thinking might just scare you all off.

Emotional & Personality Changes

To start off on a sensitive note; here I grouped together anxiety, depression, restlessness (sometimes even to the point of not being able to sit down for more than a few minutes), increased anger and/or spikes of irritability, and finally insomnia. There were also quite a few votes for a category quite simply named “weird dreams”. Which I thought was unpleasantly threatening. 

As far as I know, doctors are simply blaming these issues on the global pandemic or seen as an expected consequence of our illness. Ignoring the fact that CFers are well aware of their baseline going into this treatment. Not acknowledging, that perhaps this meant they had fallen into a deeper rabbit hole that was unusual even for them. 

think of it as our tolerance for darkness is high… so, our complaints shouldn’t just echo as empty laments

There are quite a few testimonies that expose the extent of this emotional hurricane and those are the people who said they had suicidal thoughts because of this treatment. And it is not as uncommon as you’d want it to be. The reason some feel that Trikafta is the source of the problem is that upon stopping it, things changed back to what they had once been. Some were able to pick up the treatment back up at a later date, others weren’t.

Neurological Symptoms

This is a big category, big because of its importance in regard to how dangerous these side effects could be. But also, important because I have yet to hear a doctor admit they’ve heard ANYTHING about this. The reason I’m putting it in quotation marks is because CFers have named these “neurological symptoms” but it’s to encapsulate many things we don’t understand and can’t explain.

Symptoms have been described as a brain fog or a feeling of having been slowed down in your own thought process. Others feel it as forgetfulness and memory issues. Some describe it as having forgotten their words mid-sentence. Reporting an actual inability to communicate and think sometimes. Which inevitably affects our ability to do take care of ourselves too.

Muscular & Physical Effects

Surprisingly, “increased fatigue” was high on the poll. Because the medication is intended to allow us to breathe better to then become more active, it seemed illogical to me. This umbrella term included arthritis, which was somewhat common pre-Kaftrio. But then again, this point could be taken as a symptom that was present before and has now gotten worse. There were also a few votes for tremors, ringing in the ear, and general muscle weakness. Building to more dangerous symptoms, like swelling of the legs and arms.

Some people even noticed hair loss, whilst others noticed complete hormonal changes that messed up menstrual cycles.

Lastly, there was a poll option simply named “general body pains increased”. As I’ve stated before, we love being extra, but my heart broke a little for the people who voted for this one. Because it was so easy to understand what they meant and what that statement signified. If you looked closer… you would see it was a resignation. A resignation to find where the pain starts and where it ends. 

Whether it had become a maze or a distorted watercolour painting… sometimes we can’t make sense of our pain because it’s just everywhere. 

Effects on Chronic Illness

I created this sub-group for the symptoms and issues that were already frequent and typical to CF before Kaftrio, but are still described as having gotten worse or harder to manage. Issues like constipation, night sweats, water retention issues and dehydration, oily stools, increased reflux, and sun sensitivity. 

When something happens almost daily, you need to trust the person you’re talking to when they say that the messed-up thing actually got worse. Just like we trust the doctors to tell us what to do. Sometimes it’s about awareness and feeling, not knowledge. Sometimes it’s just a gut feeling that forces you to start drawing an x on your calendar when something feels off. Confirming that something has in fact goten worse only with time .

Other side effects that are perhaps more troubling include new volatility in blood sugar, higher blood pressure, and even heart palpitations. I remember at the end of 2020, a few posts even appeared talking about strokes. It was believed to be a possible turning point when hitting the one-year mark of being on Trikafta. Even if no doctor has acknowledged this either, I was happy to know about it.

What is not being taken into consideration truthfully, is the life people may have when on this medication, in the other sense.

More than one person voted for each of these symptoms and side effects. And in no way was this poll compulsory! I showed you this side of the coin so that somewhere on the internet, people could find the truth about what it’s like to take this medication. 

The difference between giving or taking Trikafta is that all of these things – even if some are slight in intensity – start to weigh on the body and mind when they accumulate. So, even if there is that lung function increase and shorter antibiotic treatments, it’s still worth asking how the rest of the body is doing. And yes, if it is actually worth taking.

I really wish that the medical world didn’t have to deny any truths to claim that this medication was good. Just like I wish it didn’t have to claim to be life-changing to be good. It feels like a sort of eyes wide shut situation to get as many people to take it. There will always be more medical intervention to prevent treatments from truly negatively affecting a patient’s health. But I’m not sure doctors would put that much effort into describing all of our self-assessed symptoms to colleagues. Or perhaps it is Vertex that is refusing to acknowledge more symptoms. 

photo by Franco Antonio Giovanella

Who knows. But I have asked my doctors about these possible consequences… and no one knew what I was talking about. No one had even heard anything.


It has potential.

However, the reality is that we are just in the second year of commercial use. Side effects are being denied or blamed on things that are outside of our control. Which will always be easy with a chronic illness in case anyone was wondering! We don’t know what will happen in the long term. Will improvements plateau, like with the other modulators?

Vertex has been trying to make the perfect modulator since 2012, so why is it acceptable to label this treatment a miracle? A treatment that achieves on average a 15% lung improvement? A medication that creates whole new problems? Problems that are truly frightening if you were to imagine it happening to your body. But most importantly, not all CFers can take it. Why is that a miracle drug, for us?

One of the articles I read actually quoted Doctor Leiden (a Vertex biologist) saying that the birth of Trikafta meant he had conquered a disease. And oh boy, was that triggering. 

No, you did not.

stay in your lane.

Coming from an educated man that should know better, this statement truly seems to have come off an ego high. Because who the fuck are you to say that? If you haven’t lived a day with this illness, you haven’t conquered anything. Never experienced our battle and fought for your breath. For your life. This isn’t your battle so don’t claim our struggle as your victory. You are no conqueror. 

Especially considering your medications is average, sir.

now, putting the guns away…

I wanted to write this post before I started my own Kaftrio treatment because I wanted to remember how I walked into it. It made me sad to see other CFers or families of CFers get aggressive with people who were questioning this new treatment. Because I wish they understood that questioning something isn’t the same as an accusation. 

When I had objected to these treatments in the past, it was blamed on my lack of perspective. As belittling as it was, doctors allowed for my decisions to reign. But in 2021, when asked why I wasn’t taking modulators, my being healthy enough to not want to risk was not an appropriate answer anymore. It was met with such a blank stare that it made me wonder if I had mooed at them.

Truthfully there was no discussion. Kaftrio was on the table now. The ultimate modulator. The UK had been waiting to catch up with the US for a year, so what the doctor found to tell me was “well, we usually get people begging us to get them on the medication. So, this is new.” As per, she was more amused at getting her way than concerned about my feelings.

All of this indoctrination, in just one year and a half, is truthfully impressive. But with everything going on in the world on top of our usual fighting, I just don’t understand why hesitation is so surprising. Despite the truth being that plenty of us are willing to take it… plenty of us are also worried and hesitant. And I’ve seen that. I’ve also seen people decide that the bad side effects weren’t worth the boost and they stopped. Even if the doctors wish they hadn’t.

So, my real and honest question is… is this simply a good medication, that the doctors and pharmacists are treating as a golden ticket? 

photo by Will Myers

Regardless of what our certified doctors said, the good Samaritans of our community took the time to warn us. The whispers of a crowd can be powerful. And it’s a shame, for everyone, to turn their nose down on it just because they can. It’s the snobbism of the medical world. 

My Pandora pills arrived just as I finished typing this up. I only realised how tense I had been that morning after my Kaftrio was delivered and in my hands. After having put my whole day on hold to be there when the doorbell rang, I forgot how quick it was to pick up a parcel and just start freaking out. 

I can’t say I’m excited and it’s because I am playing offense right now. Without focusing on who or what, I felt pushed into this medication. A medication that feels different – more aggressive – and in a time where chronically ill patients are not getting the care they usually do. It sucks that we’ve been waiting for a new treatment to change something for us for over two decades and that it came out just a few months before a worldwide pandemic. It’s understandable that some of us are in a state of hypervigilance. 

But hey, I’ll be happy to be proven wrong on this one.

speak soon

Ballistic xx

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When My CF Met Miss Corona

76 days of isolation and many more to come… as challenging as it is, I must admit it has felt peaceful. Let’s bring it back to when the first spark flew.

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As someone who spent her life in and out of hospital consultations without truly getting better, I wanted to explore the idea that medicine and health are a fad. This is a tiny piece of the puzzle but it is where a discussion can start.

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The 2020 Road-Trip: a Covid-19 travel story

After 17 weeks of being cooped up in my home, I have finally stepped outside again. But not for a simple walk, more like a very long car drip across the Channel and France. I have finally gotten to Switzerland, and the trip was so different to any I have gone on in the past.…

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The Tale of the Emla Fairy

The Tale of the Emla Fairy

I have been terrified of needles for as long as I can remember. And what I mean by terrified, is that just the thought of a needle could spark hours of bad moods, make me spiral by the simple mention of it in an e-mail and most probably make me cry before it even happens. Admitting that it still happens to this day is probably not my proudest claim. But at this point, the whole act of going into hospital, being put either in a bed or chair and feeling the tight strap around your upper arm simply feels like trauma. However exaggerated this sounds, it’s not trivial, anyone that goes through something painful and scary over and over again can experience some form of PTSD. 

So, jumping off that, I was very grateful for my fairy friend growing up. Emla Cream is a staple of my times in hospital and from the age of one to… well, now… I have been using it as my little helper through something that was unavoidable, but violent to me nonetheless. And there is no shame in having a little help.

if there’s something that makes something else less painful, you use it right?

Recently, I had a little realisation, that made me giggle because it brought me back to a time where I didn’t think as deeply as I do now, and life was frankly simpler.

On Monday, I had to go to hospital and in the middle of an appointment my doctor realised that I was missing a few tests, so on the spot she suggested I get blood drawn. Cue, instant sweating. Regardless of the overwhelming feeling of dread, I wanted those tests done and for once I acknowledged they were important. Or, I was finally smart enough to know that if I didn’t do it then it would just mean I would have to do it another time, and living through the anticipation of getting it done, is half the trauma. So, miraculously, I said yes and got it done then and there.

Because the Swiss are beautifully sensitive, they offered to use Emla numbing cream, despite the fact that I was in an adult hospital. They were ready to wait the 40 minutes so that the cream could have an effect. The nurses were perfect. But I decided that I didn’t want to wait and just gathered the strength to do it without Emla for the first time in twenty-three years.

I still really don’t know why I made these chains of decisions if I’m being totally honest…

Well, spoiler; I did it and it went fine. 

In the past nurses have used the snarky comment that I have visible tattoos as a way to question why I would be scared of a little needle for bloodwork. I am never going to admit it to them, and I will continue to snap back if a nurse belittles my fears like that, but yeah, my tattoos definitely hurt more. 

But that wasn’t my big realisation. 

You see just on the 9th of July, I got blood taken with the numbing cream. And I specifically remember telling my mother that, it didn’t hurt, but that I could feel everything. As in, the cream took away the pain of the needle, but not the sensation of it. However, if you had asked me if this cream had taken away total sensitivity as a kid, I would’ve said yes and been convinced of it. But I now think that, that was actually just the power of positivity in a child’s mind.

In simpler terms; the Emla fairy works only if you totally believe in her. 

she was my own little Tinkerbelle

I thought the Emla cream had stopped working in July, I thought we hadn’t waited enough time, or hadn’t put enough on. But that simply wasn’t the truth. The truth was that as a child I wanted to believe in everything. I believed in magic. 

Now that part of my brain was stained by my, albeit limited, knowledge of A-Level biology and medicine. I knew too much to pretend like I didn’t have a needle piercing through skin and veins. And that’s just the reality of growing up.

This enlightenment wasn’t sour or sad. For a minute, I was impressed by my strength as a child. And I’m happy I had a little imaginary fairy friend that was there through every hospital stay as a kid. I remember getting a diploma after my first big surgery when I was 10 years old, saying that I had done a marvellous job and that the Emla Fairy was proud of me. And I still have that diploma in my mother’s home, because it really meant something to me back then. I remember thinking that it was because of that little cream that I was okay, that I didn’t feel the pain, that I wasn’t alone. That was important to me as a kid and I continue to be so impressed by the paediatric nurses that looked after me for all those years.

And then, my next thought was, I’m proud of the woman that decided to deal with reality face on this week. Despite my fears I still basically just said, fuck it, let’s get it over with. And my anxiety ridden self that dragged her limp body through hospital corridors, would not have done that last year. 

In conclusion, I will miss my little Fairy friend. 

I definitely needed her for a long time, but now I may just be able to go in a little more independently… or at least sometimes. Regardless, I’ll always be happy to see my old friend.

merci pour tout, ma petite Fée 

Do you have any tales of when your childhood memories impressed your adult minds?

speak soon

Ballistic xx

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Respecting Anger: The Importance of Negativity

When I was growing up I remember being told off for being angry, easily triggered and quickly overwhelmed, and none of these comments were exaggerations. However, I can also say that it wasn’t wrong of me to be so angry, and it definitely wasn’t wrong of me to express it. I just needed to learn…

Respecting Anger: The Importance of Negativity

Respecting Anger: The Importance of Negativity

When I was growing up I remember being told off for being angry, easily triggered and quickly overwhelmed, and none of these comments were exaggerations. However, I can also say that it wasn’t wrong of me to be so angry, and it definitely wasn’t wrong of me to express it. My emotions always felt like an already full vase, and any blow I got would immediately make that vase overflow. I rarely had the opportunity to resolve a problem before another challenge breathed down my neck and it just felt like the word patience was never a part of my vocabulary.

As hard as it was to handle from the outside, it felt like ever vein in my body was exploding at once and I would lose control of all my emotions instantly. And that’s what changes with time… Because I am still just as angry, frustrated and hurt now as I was back then, I am just a little more mature today and I know how to use it. I know where to direct it. I know when I need it and I also know when it is just hurting me instead. That’s the peace I found, and it feels pretty good. 

let’s take a step back from the whole medicine thing… 

I learned frustration was important when I was 14 and landed my first triple pirouette with tears on my cheeks. I was mid teen trauma and was feeling hurt over a boy, but nonetheless, I had shown up to my dance class despite feeling very sensitive. I was shamelessly gossiping with my friend mid-diagonals when my teacher yelled at me to concentrate. It shook me, aggravated me, and the vase overflowed. It just felt like too much and when I tried my second pirouette I landed a triple, and then I did it again. 

When I stopped pirouetting, I had a little giggle and two medium-sized sobs. I had gotten a release of emotions and an ego boost. I went from being sad to feeling so proud. The frustration had turned into power. One emotion had fed the other.

And that is the day I realised that saying anger and negativity rotted the soul was simply a form of propaganda to make compliance more appealing.

Being positive has always been the golden mindset that practitioners and nurses sold patients. And I understand the importance of hoping for the best and not visualising the worst-case scenario, but over time, that inevitably creates pressure to always stay positive when confronted with medical bad news. At some point, however, the pressure just comes across as heartless. 

The erasure of anger and frustration in patients is so much more common than what doctors will admit. Fear in patients is, more often than not, discredited before it is even listened too… “Oh my god, how are you still scared of needles? You’ve been doing this your whole life”… Or the even better belittling comments… “I know this does not hurt, stop being dramatic”… I’ve stood up to nurses and doctors for being rude and insensitive, and even accused some of suffering from such an inflated ego that they considered good bedside manners a passing suggestion. Or coddling as they would rather justify it. And when I stood up to those doctors, it allowed me to find other physicians that treated me with more individuality. In the end, it benefitted me.

I am happy that I was as angry as I was, because the first decade of my life made me feel powerless and the second decade was me desperately trying to find a normal within the currents of the illness. And being angry meant that I never once gave up. And I never allowed one low point to define my future. It was a Battle Royale I was fighting with my own body and it made me unhealthily competitive. Because it was never a death sentence to me, it was just something in the way. I would knock it back over and over again, and when it got back in my way, I would push back once more. A game of ping pong. A blow never felt like the end. And that was because of the rage.

I never accepted that it was the end.

So, why does being angry socially insinuate that you are giving up?

Has no one considered that maybe for some, being angry and going into a challenge with a fuck you mentality might just be best? 

How could you not be angry if you repeatedly get interrupted mid-life? To me, the highs and the lows allowed me to have a rhythm of moments where I focused on CF and other moments where I focused on living and laughing. It also takes the pressure off because it allows for a break in a world where you are born sick and will be sick until the end. Having to put those amazing moments on hold is hard but it motivates you to get back to the fun that fuels you. 

We have one advantage of being sick by birth; we know what a good day is and we know how to recognise it the second it happens. Being able to recognise and cherish those good days is so important because it reminds us what it is we are still fighting for. And what is worth getting angry over. 

that’s passion

Having any type of passion in life is essential to making you want to live it, no?

My mother had to come to my defence once when a family member criticised me for being too mouthy and too sassy. Which, again, is completely true. I didn’t feel like I owed anything to anyone. Maybe that’s just the effect of thinking you’re not going to be around for long. Who knows.

My mother’s only rebuttal was that I needed that bad attitude to get through the life I had. 

Because it’s easy to say someone has a bad attitude and just infantilise a person’s fight, but it’s hard to come face to face with a strong character and not feel challenged by it. I am not claiming my anger was never out of line or misdirected. There were many moments when I would say really nasty things because of how uncontrollably angry I got. There was definitely a learning curve within my own rage, and it definitely got me in a lot of trouble as a teen. But what I never forced myself to do was to forget and leave the anger behind. For two reasons; the first, I genuinely cannot imagine a world where I suffer with CF and am fine with it, and two, it gave me fire, it gave me an edge that got me out of some pretty bad luck. It gave me something to believe in within myself. It was an emotion that actually pulled me out of bed because I wanted to prove my prognosis wrong. 

The point is, there shouldn’t be a policing of emotions when it comes to defeating your own personal dragons. If you have a coping mechanism that works, keep it and thrive in it. You’ve got enough on your shoulders to not have to apologies for how you survived trauma. 

And if the weapon you choose is anger and rejecting the defeat mentally before anything else, then so be it. 

you will be ferocious

And there’s nothing wrong with that.

speak soon

Ballistic xx

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The C(F)loak of Invisibility

What threatens my life is within my own body. It is simply not capable of functioning on its own and I am kept alive by a robot army of medicines, it helps, but my body will never be independent or free. And all of this is invisible. In a way it was real only to…

a Threat to my own People

In my last post, I explained how I felt isolated from the machine-like, normal, world outside of my illness, and so, I thought it would also be important to explain how I can feel isolated from my own community at the same time…

21st Century Medical Takeover: are we health obsessed or overcompensating for toxic habits?

21st Century Medical Takeover: are we health obsessed or overcompensating for toxic habits?

In 500 years, we have more than doubled (almost tripled) our life expectancy. The art that is medicine has allowed us to live past natural discrepancies. As a fact on its own, this is positive. In philosophical terms, we could debate whether it is a manipulation of nature and the cycles that feed our everchanging world. And when I think of where I am right now, stuck in my home because there is a virus that overwhelmed the world and pushed us down to our knees, I question what it is we have achieved with all these medical advancements. Ultimately, has it made us healthier?

The Health & Wellness industry has boomed; it is growing twice as fast as our global economic growth, and we are the reason for it. It seems like society has become hyper-focused on improving themselves, with anything from treatments and medication to yoga and acupuncture. We live in a time where everyone is taking some type of medicine, vitamin, or supplement. 

We definitely avoid many infections with vaccines and better hygiene. With the technology now developing intertwined with medicine we can detect diseases much earlier than before which automatically jump starts the odds of beating said disease. Essentially medicine has allowed us to curb and avoid certain illnesses, but there are very little examples of our individual bodies becoming stronger with time. 

On a completely different note…

The subsection of pharmaceutical drugs that brings the most money in, is diabetes. Which is interesting considering it is also kind of a man-made disease. I say this because genetics is not the only root problem, lifestyle and choice in food are actually much more responsible for causing Type 2 diabetes, which is the most common type. In fact, some doctors have gone as far as saying there is a diabetes pandemic in our modern world. This is not shocking when you consider the problematic food industry that we blindly continue to consume.

Obesity and eating disorders are known to be storming society right now, and despite this common knowledge the numbers of diabetes continue to rise. So, is there any truth in saying that we may be using medicine to correct the unhealthy eating habits and the high-sugar foods that populate our plates? In other words; are we using medicine to continue being unhealthy without suffering the consequences of a failing body?

Now, that is only one example within the world of medicine, I am also not claiming that there aren’t plenty of services that are essential. What I am trying to highlight is the sort of hyperinflation of medicine that has led us to go into the extremes of treatments. We have become so hypnotised by how many things we can change and fix with medicine that the question of health isn’t part of the argument anymore. Instead, perfection has become a general obsession.

Whether it be drugs, procedures, or circuits, I think it would be false to claim that medicine is still pure at heart and only cares about creating healthier bodies. Otherwise why aren’t there consequences to antivaxxers propaganda and why is one of the most fruitful medical industry plastic surgery? These are two extreme examples and I am only using them to show one situation where scientific facts have disproven a belief, yet health measures aren’t imposed even on helpless babies, and the other is a multi-billion-dollar business that is completely legitimate but has next to no health benefits. 

An article in Forbes explained how hospitals and medical personnel were affected and even sometimes overwhelmed, by this surge in need for medical attention. What I found interesting was that it pointed out that almost half of physicians were experiencing at least one symptom of burnout nowadays. This reminded me of what a friend had told me about therapists having therapists of their own to manage what they were experiencing at work. The irony is that the people that have dedicated their adult lives to caring for the sick have actually been made ill by the pressure that that represents. So, I wondered, if our doctors are getting sick because of the industry, how can we assure and claim it is safe for patients?

I guess I am disillusioned by the healthcare system because too many souls walk out of hospitals scarred and scared. There is so much funding and attention being funnelled into the world of medicine that we are inevitably going to turn it into a capitalist, money-and-conversion-rate hungry monster if we don’t guarantee that the industry remains equal to all. Losing more of the humanity that started and sprouted the angelic work of nurses is not the way to make this world succeed. 

Consider the evolution of wearable technology in modern medicine; is this just a new way to micro-manage and prepare for the effects of our unhealthy behaviours? Why do we need all these new ways to report our health if we are indeed getting healthier with time? The medical industry is going deeper into its marriage with technology, and the reason it is worrisome is because it is inevitably pushing the pattern of replacing personnel with technology. I worry that we will have a goal to survive but end up bulldozing over our humanity to do so. 

So, I want to ask; if there is a dramatic difference between how much money is being pumped into the pharmaceutical world instead of hospitals, are we still thriving for wellness and health or have we pinpointed the most lucrative aspect of this business?

I don’t have the answers to these questions, and I know these are vague comments considering the subject matter, but maybe this is just the beginning of a thought process…

I’d love to know what you think.

talk soon

Ballistic xx

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