Tag: Cystic Fibrosis

about Cystic Fibrosis, discussing the Medical Industry, general Politics

The Triple-Combination Modulator: Through the Trikafta noise…

by Ballistic Mitosis2 Comments on 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 pleasantly unthreatening. 


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. 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 regards 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.

Conclusion

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 too. 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 your nose down on it just because you 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 in 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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To All the Humans I Left on Read…

by Ballistic Mitosis2 Comments on To All the Humans I Left on Read…
To All the Humans I Left on Read…

Hi!!

welcome back, friend…

It’s been a while… I have had too much going on. On top of this pandemic, my Cystic Fibrosis decided to become very surprising last year. A few too many trips to the hospital really made me lose my grounding, and I just couldn’t make time to write. The months of isolation ate at both my creativity and concentration and in August I lost sight of what it was I was fighting for. My list of things to do turned into a knife digging into my ribs and I knew I needed to take a few steps back to enjoy silence again.

as Mrs. Bennett would say … I needed to take care of my poor nerves

Coming back now, I was trying to find topics to talk about. Like anything about this pandemic-infected chapter that is uniquely outing selfish idiots or something trending about this new CF miracle drug – which definitely deserves some discussion – but as I was doing so, it felt just a little too fake. I hate pretending like I didn’t do something or something didn’t happen, so here we are. Because this may be the first time I’ve been silent on here, but it isn’t unlike me to do so in real life. And the couple of people reading this deserve a little explanation. Or a little warning that this is yet another slice of my reality. 

You see, I started this blog because I wanted to build a community, or bubble of freedom, on this huge world wide web. In my mind, I had made the commitment to be present on here, so this absence feels like a failure. And it’s disappointing, to me. Therefore, if this post feels dramatic or out of the blue, know that, it’s just because I care. And I care a lot.

This piece began when I would write my thoughts down with the sole intention to make peace with them. Now, I’ve added a few whispers for other people to understand me a little bit more. A mixture of Fanny and Ballistic.

This is to all the humans I have left on read over the years…

We live in a time where we rarely have to put an end to a conversation. Where a conversation can exist in the silence of two minds separated by a hundred mountains and yet still be just as real as if it had been spoken at midnight, under a duvet, during a teen sleepover. We live in a world with such a constant connection that we feel like whispering a question into the wind can be heard by your loved ones as soon as you press send. To such an extent that we feel alarmed or slighted when a dialogue doesn’t prove to be as smooth as the blink of an eye. 

how obsessive is that?

I am not the first, nor will I be the last, to say that technology is a gift and a curse. Blah, blah blah… But, what I want to add is that to different lifestyles having your concentration constantly challenged can feel as dangerous as a noose around one’s throat. 

There is nothing inherently twisted about wanting to be able to talk to your loved ones whenever you want, but it is exactly this immediacy of technology that created little cracks in the basis of our social web. These cracks allow social media to dig in its roots whenever your mind is not occupied by another human being. It splits your world into what’s virtual and what’s not. It allows a game of power to begin between the two worlds. The goal being to capture your attention, forever. 

We have become accustomed to hearing “pings” whilst we cook, work and sleep. But we don’t realise that all those sounds that follow us like dormant doorbells become disruptive to our most natural train of thought. 

We’ve all received a message mid-conversation and just dropped our gaze towards our black squares and completely forgot what we were saying, or what the human opposite us was talking about. Our voices ran out with the end our breath and our brains switched onto the static calling light. Isn’t it a statement that technology, at that time, or at any time, actually came before a human? 

Life is exhausting and I don’t want to hate my phone like I do the idea of a nagging child demanding my attention whenever it pleases. However dramatic the comparison… when you’re having a bad day, that is how a constantly buzzing phone can feel like. It’s an interruption that takes away our independence a little at a time. And I guess that is what frustrates me the most. 

Anyone that attempts to have a friendship with me knows how much time I can take to reply to messages. This habit of mine has kept my friendship groups to a tight few. The few that are patient enough to know that I don’t do it out of anger or avoidance. But out of necessity, if anything. I will never know how much my friends see my CF as soon as they think of me. But I can tell who consciously understands that our friendship will forever be just a little different because of it…

As we grow up, we are taught to know what our priorities are, and that those are decisions we make as we go along. However, that is just too general a statement to make. In actual fact, the opportunity to choose those priorities is a privilege.

I’ve had hundreds of conversations with my friends about what a healthy work-life balance looks like and how we are clearly far from it as young adults… but not many people talk about the work-life-and-chronic-illness balance looks like. I don’t know if there is an answer to this question. It might not necessarily have to be all parts equal to be the healthiest. It might not be a constant rhythm of battles and able to be more of a push-and-pull kind of necessity. However, the reality is that having a chronic illness means you don’t always have the choice in what to do next.

It’s a restriction of freedom in the most basic of ways. Where it just means I don’t always have the brain space to dedicate to conversations. If I always tried to push through, I would forget the loop of medications and therapies I need to keep myself alive. 

To be honest though… my situation means that I’m exhausted all the time and don’t want to be talking to people constantly.

but that’s just me

When I am enjoying life, my mind is switched on and I am present enough to respond to messages just as fast as the stops on the Victoria line pass by in front of me. But when I am home, I am in my sanctuary. My time spent cuddling my hot water bottle is essential to me. With that warmth, I lay my head down on my couch cushion and just release the tension I’ve been holding in my body to keep everything together.  

In a way, my home is my dressing room and that threshold marks the end of my performance. Beyond it lies tearing off my corset and tights, taking off my make-up and putting my hands on the table in front of the mirror before catching my true breath for the first time in hours. When the distractions of the outside world slip away, my pains return. My CF awakens, and I comply to her needs. 

That is my reality and my cell phone is effortlessly forgotten.

The two states of mind feel like two realms, that never fade over one another. When I was young, the separation just felt like a feeling, but over time it’s slowly become a glass wall. That more occasionally than not, fogs up if I push too far. As much as social media has helped us stay connected, it is clear that the pleasure and passion one feels from experiencing people in real life is just different. Just that little bit more magical.

Initially, I wanted to explain how I didn’t have time to be on here. But I’m realising now, that’s not helpful, because that’s not the point. The point is that when a priority needs to be chosen, technology is low on my list. There is so much going on in my real life that the virtual feels numbing to me. Truthfully, so is anything that isn’t directly human. I would put everything I have into experiencing the world, that is what is important to me. 

even if it makes me a bad texter and a bad blogger sometimes

I have never lived to work or to be a perfectly accomplished human. I just wanted to be a loving human and a caring friend, to myself and others. So, having said that… I will try to get less overpowered by my duties and fatigue and be more present here. I will be a better friend to the humans in my life. And even perhaps be a better friend to the couple of people who are reading this.

despite everything I have written here… I do apologise for my absence

The flourishing culture of instant messaging has simply created standards that do not fit all lifestyles. Some, just can’t catch up. And yet, replying to messages quickly has been twisted into reflecting your love for the person waiting for said reply. I understand the logic, but I despise the conclusion.

Because it couldn’t be further from the truth in this case.

am I alone in feeling this way?

speak soon

Ballistic xx

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The Tale of the Emla Fairy

by Ballistic Mitosis6 Comments on 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…

about Cystic Fibrosis

The Rebellious University Years: What I Learned From Finding My Independence

by Ballistic Mitosis1 Comment on The Rebellious University Years: What I Learned From Finding My Independence
The Rebellious University Years: What I Learned From Finding My Independence

Looking back at the young woman that was prowling through the bunny-filled garden that was the University of Kent, I realise now, how selfish I had been in a time of total independence. By selfish, I mean that I listened to myself and my body over other voices. It happened organically because for the first time, I was separated from my family, from the people that expected me to be a good girl, a wise girl. And the most important thing I recognise today, is that I needed that time to be careless and selfish to understand what type of life I wanted to fighting for. And ultimately, to see my limits be more than just words on a medical report. 

in truthfulness, I still needed to be convinced that those limitations existed

In September 2014, I arrived in Canterbury as a loud Italian with a certain kink for testing the boundaries of social norms, and for the first time I would not have parents to limit my wildness. Very quickly, England became my land of freedom and expression. 

When I was applying for universities I was in a British school in Rome, which meant that they helped you apply to UK universities only, which led to my first big decision. It meant I had to choose whether or not I would move countries, at 18, on my own.  I had been travelling every three years for most of my life, so moving wasn’t scary. But I had never been alone in carrying the weight of my Cystic Fibrosis treatments. Not many patients live far from their hospital, but I had been able to due to the help of my mother and family. Now the question was, was I ready to move and leave behind my last safety net?

Opportunities became the deciding factor. I had done all of my schooling in English, and considering I wanted to go down a writer’s path, staying in an Italian speaking environment wasn’t logical.

As much as I was scared of moving countries and starting anew on my own, I was using logic to make a dream happen. I wanted to be free, but I also felt guilty about desiring that freedom. We all have that little piece of our heart that tugs at us when we are considering leaving our families for the first time, an action that ultimately says “the life you are giving me isn’t enough anymore”. And the reason why guilt had haunted me when making that decision, was because my family and mother had given me life. Protected me through everything. My mother had been my personal nurse since I had been diagnosed at 11 months old. I felt like I owed them something, and more importantly owed her love and gratitude.

Leaving allowed me to detach from the rules that had brought me up. A liberty that led me to wander for a while, make mistakes, experience things I had fantasised about for years. I truly let loose and learned how to party the English way. But what was so special about this new freedom, was that it led to me making my own rules. To create a life I was convinced was correct and fair to me. I thought that if I was convinced of my abilities and limitations, my desire to break the rules and escape would calm down. 

Now, before I go on, something must be made clear. I am writing this because I believe I learned something in this journey, I learned about myself and who I was as a patient. In this post I am not claiming that what I did was medically beneficial, and I will be honest about that too, but I do not intend to fight for my right to choose my own medical path. So, if you are a health gatekeeper, I would like you to go read my post entitled Medical Disclaimer. My story is mine, not wrong, just different.

so, let’s try to keep judgment away from here, okay?

As a little background information; I have Cystic Fibrosis, with homozygous delta F508, which means I need breathing treatments and also have digestive issues. I have the fullest form of CF there is… what can I say, I like to make a statement.

I’m an extreme kind of gal 

My daily medication includes many pills and extra vitamins to supplement my dietary insufficiencies, pain killers to manage the chronic pains, and aerosols to stop my lungs from gluing to each other, and finally on top of that I should be doing a lot of exercise (almost daily) to accompany the aerosols. So, in lesser terms, it takes up a lot of time and a lot of dedication. These two things would be very challenged by university fun. 

Three big things changed, and I learned one incredible truth about my body. 

My first confession will have to be that I let go of my breathing treatments and starting smoking weed every day. 

Let’s start with the aerosol thing… I did something foolish. It was a careless decision. I am not suggesting it to anyone. But, here is my side of the story. I had never missed a therapy in my life until university, and my FEV1(in other words, lung function) was in the high 90’s. What I’m trying to say is that, I had good enough health to be able to risk it for a little while without putting myself in immediate dangers. But the truth is that I went from doing therapies every day, to doing it twice a week. 

Why you ask? Well it’s simple and stupid, it took too much time. 

In my first and second year I lived with friends and it was so easy to let myself get carried away and find myself at 4 in the morning, exhausted and intoxicated, ready to go to bed without having done my therapies. Because I felt healthy at 19, I would simply go to bed and forget all about my aerosols. My third year was a little different, I was single and lived on my own and I started to feel that I needed a little bit more support to keep up the life I wanted. I perhaps picked it up to doing therapies 4 times a week, not much truthfully. But by then, I had taken the habit to recognise a little shake before it became a problem, and in those times I womaned up and did better with my therapies, because I knew I needed to. 

Again, none of this was wise. It was part of refusing to acknowledge that CF was truly a part of my worries. In my mind I was young and invincible. I’m not saying I’m weak now, but I understand I have limitations. 

And if you want to know the stats about how this time affected me; in three years I lost about 15% lung function. 

Now, let’s address the second part of my confession… in total honesty, I fell in love with weed. To me, it gave my body a break from pain. It didn’t block out the extreme pains, but on a good day, it would silence that little tremor in my brain that acknowledged I wasn’t crumbling but that something could threaten a downfall if I pushed too much. 

You see, pain isn’t one-dimensional. 

In the sense that it doesn’t debilitate you as soon as you feel it, but rather is the warning sign of something that could get worse, and slowly it builds and does. There are hundreds of little pains that we ignore because they are simply scars of somewhere your body took a hit, pushed through it, but was left just that little bit bent. For example, at 18 I caught a very bad lung infection that landed me in hospital for 3 weeks. My left lung suffered more than my right, and ever since I have strange muscular pains across the left side of my upper back. This pain increases when I do sports or whenever I am slightly sick, but on a normal day it’s manageable. There’s no pharmaceutical solution for this, so you just have to move on and deal with it.

There are also pains that are side effects of medication, remnants of chronic bruises, pains that labelled as “tolerable”, these pains are simply part of the diagnosis, part of the treatment. And I think that there needs to be a point where we stop turning to pharmaceuticals. Because in case you had not realised, those pain killers are part of the spark that starts problems. They are not harmless.

What I found with weed is that it quieted those small screeches of pain. Aches started feeling like a piece of fabric on my organs instead of energy controlling my body, I could feel its shadow, I knew it was there, but it didn’t bother me anymore.

On a mental point, it distracted me. I also mainly smoked with friends, so with my mind occupied and my body dimmed, I felt normal.

Past what it did for my pain, it helped my depression. 

dark thoughts simply didn’t feel as heavy anymore

I don’t know how to explain it other than, it took my illness down a few levels of difficulty. It became manageable and stopped me from having crazy spikes of pain or depression.

Regardless of why, it was the correct choice for me and I do not regret that part of my life. But it is a part of my life that I get a lot of blow back for. To many people, a CFer should never smoke, for any reason. But the thing is that life is a rainbow of colours and shades. One rule will never apply to everyone. And if what I am doing affects only me, you shouldn’t have a problem with it. 

simple

To close this topic, I am just going to add another little disclaimer. I hope that anyone who reads this can see that I do not intend to glorify the smoking of marijuana. But that I do support and will voice my opinion about the benefits of CBD and THC in pain management.

The second big thing that changed was that I stopped taking digestive enzymes altogether. Digestive enzymes are a basic for CF patients as our pancreas has fossilised and stopped the production of enzymes at an extremely young age. It is a medication that you wouldn’t dare to question out of the blue, simply because no CFer with my mutation is told they can go without. I realised how detrimental it was to my health, because I started forgetting them. And one day I realised I hadn’t taken them for a week and it felt incredible. 

there was a world of difference. 

So, I spoke to my mother about it (remember she’s my personal nurse and knows everything about my illness) and I told her exactly what had been going on and how it had affected me. She couldn’t believe it because it didn’t scientifically make sense. So, I decided I would not take them for a month and see how it went. After a month, I was feeling like a Rockstar, barely hindered by my pains, and I had cut down my hours spent on the toilet by half. I felt in charge again. 

It still wasn’t logical to my mother’s medical knowledge but when I went home for the summer in my first year, I showed her. Did three days with, my life was hell, I was spitting at her “do you see? I know my body.” I was furious that she hadn’t believed me. But after seeing it with her own eyes, she couldn’t deny it. 

Revolutionising my treatments like that did come with a cost at the beginning. I was around 73/74kg when I left for university, and I went down to mid-fifties when I made that switch in my second year. I was very skinny for about a year and then my body started putting the weight back on at a slow and regular pace. It took me about 3 years to get back to a healthy and stable weight.

But I am so grateful for myself when it comes to this battle. I’m grateful because I had the courage to trust my body completely.

I hadn’t been scared to throw myself into this challenge because I had my mother, that at the end of the day, admitted I was right. She acknowledged that what I said was true, and that gave me the strength to do what I had to do. 

I definitely eat more than the average human, but that’s what I need to do to keep my own health going, and that’s okay.

The last big change that happened was that I doubled, and sometimes even tripled, how much exercise I did compared to my teen years. My first task at university was to find the dance society to continue my first and most important hobby. I joined the dance society and the salsa society instantly. The salsa society was just for fun, and I didn’t go very often. But when I joined it was always filled with laughter and cheakiness! 

In my first year I joined two competitive dance teams within the dance society. In my second, I even became the contemporary teacher and competition choreographer, which intensified how much dancing I had to do on my own to prepare for the weekly classes and team rehearsals. On top of our usual classes, during one term every year, we prepared a showcase where anyone could create their own piece. I partook in other people’s pieces and choreographed my own all three years. And they are my most precious memories of university. This also meant that for three months, every year, I ended up doing over ten hours of dance per week.

On top of all these dance classes, Canterbury was small enough for me to walk everywhere. Most days were spent on an adventure in some park and most nights were spent dancing with friends until the early morning hours. I physically never stopped. I think this new exercise regime really supported me through my bad decisions, and it allowed me to have the strength to bring my health back up when I stopped being foolish. 

I had definitely underestimated the power of exercise and the medicine that it actually is.  

an absolute lifeline.

Now these are the things that I knowingly and consciously changed because I didn’t feel the rigidity of my parents’ expectations of how I should manage my own illness. It was fair that they were the ones to teach me how to deal with it in the first place, but at 18 it was time for me to start making my own decisions. You see as a sick child, being micromanaged and discussing all your issues as a family is the norm, and that’s okay. But that can have an effect on our own confidence and ability to decide for ourselves. 

as a 3-year-old you don’t know why you’re in hospital so much, so you end up realising fast that you don’t know many things, and doubt settles in

Even if parents do not intend to pressure you into doing something, when it comes to health, the pressure is there because you see their worry, fear and their love for you. It isn’t because they judge, it’s because they want to protect you. And you protecting yourself, will inevitably look different and ruffle some feathers. 

Now, about the truth I discovered… I would like you to take a step away from medicine and all that is facts because what I learned was something about our emotions and holds no scientific proof, but I need you to understand how true and important it is regardless. 

What I learned, was that love and laughter fuels your body with a strength that you cannot quantify. 

I learned that joy was actually the strongest tool to fight death, illness and limitations. At university I filled my days with friends, relationships and partying without giving my medical status an instant of thought. And often my illness was rendered invisible, powerless against my life. 

distraction was and is the best drug

My university years were a time where I felt my pain, but only when I had the time to. My body pushed through all the boundaries to avoid pulling my mind back to my secret reality. The pain was only visible at home. When I stepped out of my front door my tortured shadow was left behind. Waiting patiently for me to return. It felt like the most important detachment I could ever experience. There were multiple times where it caught up with me and I would have to mend the bruises of a twisted infection, but those were instances and instances don’t matter in the long run. 

My friends gave me life, my partners taught me passion, and the music made my heart pump as if my body was made of a thousand constellations. 

So, my point is that something happened when I was with friends and loved ones, where my CF was just not as loud. It makes no sense, but the days I stay home are the days where there is the most pain. In the past, I have left the house for a night out with a migraine, and have no memory of feeling that pain in the club. It’s not logical, it’s not a solution either because reality does get you down sometimes, but it definitely is a little magical.

it’s warrior magic

The reason why I am writing this, and trying to be as vulnerable and honest as I can, is because I see many CF parents be suddenly alarmed when teens go through a rebellious phase where they refuse therapies. Well, I’m here to say that this moment of rebellion will be educational, and it will be temporary. 

This is for those parents and loved ones:

Realise that we never get a break. We never get a finish line. We just get an ending. And there’s nothing anyone can do about that. So, within this life of maturity and responsibility from a very young age, there needs to be a point where they can breathe and let go. To see what their life can be like. To see the cost of it. But also, to have those memories to hold onto when they are in a hospital bed with a medically certified venomous juice pumping through their veins.

And even if our bodies aren’t made to do their thing without drugs, there needs to be a time where our mind is allowed to think of something else. Healthy and able-bodied people are constantly doing unhealthy things and not caring because they know they are still young. We must be given some of that freedom too. 

Please, parents, see that your child is trying to survive the life they have been given. Accept that there may be times where they do things you do not agree with. Acknowledge that you cannot force them to think exactly like you. And finally, allow them to create their present. They can’t change the past or escape their future. The present is all we have. 

Have faith in your kids that they are smart enough to listen to their bodies and know when the danger is actually in front of them. Realise, that when the time comes for them to fight this illness, they will want to. Because they will want to keep living.

See this as their desire to live, not as their compliance with death.

I will leave you with something my mother told me when I explained why I made the choices I made at university. 

“I know you had to do this. I knew you had to let go and see how far you could go on your own. I had no right, during your childhood, to let you not do treatments or be careless with your health. I was responsible for your health and I had to do my best. It was never my right to be lazy about your therapy. But I also forced you to do it because I wanted you to be as healthy as you possibly could when you needed to go find your own freedom. I wanted you to be able to live freely for a while, without putting yourself in immediate danger. If anything, that was the least I could give you.”

A wise woman. 

ps: I apologise for the photo spam… I was feeling a littlenostalgic.

Tell me about what you learned at university, or how you came to find your own independence.

speak soon

Ballistic xx

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about Cystic Fibrosis

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…

about Cystic Fibrosis

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…

about Cystic Fibrosis, Coronavirus Isolation

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

by Ballistic Mitosis4 Comments on The 2020 Road-Trip: a Covid-19 travel story
The 2020 Road-Trip: a Covid-19 travel story

When covid-19 arrived, I have to admit, that I reacted out of fear. In the past I have usually been able to be somewhat prepared for a crisis before everything goes up in flames… 

whenever I get bad news from the docs I had felt the shadows of the damage long before the test results, and shock was never really part of the equation

But when March came around, everything happened in a rush, and I ultimately locked myself up in my house within days of the first few hundred cases in the UK. What was even more surprising, was that for once, I was prepared to go above and beyond to protect my health, with no questions asked and no time spent dwelling over what I would lose. 

I also definitely hadn’t expected for it to go on this long, and as a loyal and old-fashioned immigrant, when summer arrived, I instinctively felt the need to go back home to the motherland. And this time around it would not be simple. I have never spent a summer without either being in Switzerland or Italy in my life. I am usually pushed to take that holiday because ever since I was a captive of the school year, the summer breaks were the only opportunity for me to go through the big medical check-up that happened once a year. 

In early April I was meant to be going into hospital for usual tests, however in late March, I had gotten news from my doctors saying that there would be no check-ups for patients that weren’t coming in for covid-19. This was the first time that doctors actually cancelled appointments, in my life. It cemented how surreal the pandemic was for people who were vulnerable, it frightened me. But now that hospitals in Switzerland have started taking patients again, I was being summoned once more. 

Except this year, I had no idea what the trip would look like. I could not rely on what I have been doing in the past. So, I needed to start planning for something completely different. 

My first tick due on the to-do list was to figure out which country I would be going to, to stay in long-term. I knew I would have to go to Switzerland for the hospital, but at the beginning of the discussion we considered both countries. 

I have been trying to follow the pandemic through the WHO Situation Reports so that I would have one stable source to go back to as the situation developed, to at least have a clear picture of patterns even if the numbers did not reflect reality entirely. As I had expected, the numbers were fluctuating in the hundreds in Italy, whilst Switzerland had kept all her stats under 100 new cases a day for a while.

they even successfully had 0 cases for a few days in June 

What made me decide, was that a long time ago I said I would never be hospitalised in an Italian hospital ever again, so miss corona felt like the absolute wrong reason to go back to la dolce vita. 

Switzerland it was.

Next duty was to find a safe haven. 

I was going to continue my personal isolation even when the situation calmed down because it still wasn’t going to be stable even when the numbers decreased at first, so it simply wasn’t safe. Because of that it had been important for me to locate somewhere that I didn’t need to share with others, except for my immediate family, I trusted them to apply rules even within our own home. 

they have been doing it their whole lives after all

The chosen nest ended up being my grandfather’s house. He had passed at the beginning of the year, in a time where I was too sick and felt too weak to travel mid-winter, which meant I hadn’t said goodbye to him. So, in a way this was my chance to have a moment with the last thing that remained of his, staying in his house now felt like his last hug. His last moment of protection. 

My extended family were kind enough to promise no one would use the house until I went back to the UK for good again. They were supportive, and when I arrived they tried to understand my boundaries and ways of social distancing. They asked questions and listened even though they sometimes didn’t quite grasp the seriousness of my situation. 

A little too often the 2m distance accidently became 75cm to pass me the cheese, or masks fell and uncovered noses with no reaction. “I’m only coming close to you for a second, just passing by!” was commonly said, regardless of mistakes, they tried to remember as much as they could. And in hard times, that’s enough.

My routine was simply a bit much for a society that saw the coronavirus as a little flu that only lasted a few days. Dare I say that I heard the words “herd immunity” be said in my direction by a cousin I love deeply. And I can’t say it didn’t hurt. 

they respected my boundaries when I spoke up, and again that’s enough

The third big question was how the hell would we get to Switzerland from London? 574 miles. 924 kilometres. I was terrified of flying; between the idea of being locked into a metal tank with other people with no way out, and going through airports with thousands of others scared me so much that the plane option was never discussed further than that one mention of it. 

I considered doing the journey by train, it would have consisted of 3 or 4 trains over the span of 15 to 17 hours when you included the waiting times. However, there would be some strict rules during this journey. One of these rules was that I would not be allowed to take my mask off until I was in a safe space. Which was either a field, with no one around. Or my grandfather’s house. So, realistically I would be wearing a mask from my front door to his. No drinking, no eating. All day. 

breathing was optional at this point…

The second important rule was that I would not be able to use any public toilets, unless it were mother nature herself. And that is a promise a CF belly simply cannot make. Essentially if I felt sick onboard, there would be no way out, in every sense of the term. The more I thought about it the more I realised that if I chose to do it that way, I would simply have to be uncomfortable and deal with it, however shitty it would have been at the end. And I have fainted of pain before, I know there is a point where my body switches off to deal with pain. That is simply not a helpful attribute in a travel buddy.

I was also in a pretty bad mood already after the first isolation, that I didn’t feel like testing my patience that much…

So, I decided against trains.

The only option left was driving. I loved driving, and it also felt like something I could do for myself, a first amidst isolation. The freedom with this solution was that I would be travelling with my own bubble of safety, in my own time. Within the car I would be allowed to take the mask off and eat or drink whatever I had prepared for the journey.

I ended up eating some curry on the way, and it was fabulous 

With disinfectant in every door, it felt like a feasible option. Mother nature would still be the only toilet available, but we would be able to leave the highway when needed, there was no timeline, and considering the unknown challenges that would inevitably arise on the road, making our own path and our own time felt like a freedom I hadn’t experienced in a while.

extra benefit of the car: I would be able to bring the fur babies!

The mode of transport was decided. We took the Eurotounel to leave the UK, and stayed inside the car during the 35 minutes (this was the rule for all passengers due to covid-19). And the rest was in the open and completely up to us. It said it would take 9 hours.

spoiler: it took 13 because of closed highways in Switzerland for the last 200km… was not fun…

I am now writing this from my balcony, overlooking the lake and London feels like a different life. When thinking about my planning now, I think I made the only right choice that didn’t make this journey an added torture to 2020. And that was important to me. I was leaving the UK to come somewhere I could breathe again, walk through my little town with a mask, poke my big toe (only) in the still very cold Neuchâtel Lake. I couldn’t start this new chapter of isolation frustrated, in pain, and ultimately in danger.

Which doesn’t mean it wasn’t a challenge either, but it allowed us to do it humanely. To stop in parking zones, or in wooded areas to set up a picnic in the sun to break up the drive. I got to explore forests to find dark and fairy-like places to squat down. My mother and I sang the loudest we could to Adele’s Someone Like You. We could not have been more relaxed on any other other public transport. 

The driving part was easy, and I didn’t see time go by because of how amazing it felt to have a mission in the outside world. Despite the north of France being very flat, we admired it and gazed at wind turbines that had never looked as mighty and powerful. To be honest, it just felt good to put clothes on and be outside. Wearing shoes instead of slippers felt special! It might sound childish, but I spent 120 days inside my home, that is 17 weeks and 1 day, completely secluded. Everything outside my home felt like something I needed to discover again.

The kittens were also an interesting touch. They began in a shared caged, however, halfway through France their meows became so intense (mainly to my ears and heart) that I gave in and let them out. I had brought their little blankie and had put it over the luggage in the backseat, as soon as their little paws felt the familiar fluffiness, they settled down. They did occasionally fight to go sit on my mother’s lap, but they were very calm and angelic travel buddies. 

I am a lucky fur mommy

I was really worried about travelling anywhere this year, I had given up on the idea entirely at one point in mid-May. I didn’t want to feel the weight of the travel on my mental health because I didn’t think I would have been able to handle hours of stress and fear. 

And considering how many meltdowns I have had in public since arriving in Switzerland, I commend myself for being so aware of the shattered emotional ground holding my life together before the travelling even started.

really shows some type of maturity

However extreme it may sound to some, every insane thing I did, I did out of fear for my future. However right or wrong, the choice was and still is mine. I don’t owe anything to anyone, and as much as it poisons my life, I don’t want to just go back into society to have a panic attack as soon as something I didn’t plan, happens.

In life, I accepted a long time ago that there were restrictions as to how, but not as to what I could do. Isolation was a reminder of that, but also a confirmation that I could really get through anything, differently than others, but I can get through anything. There are alternative lives going on all around us that we aren’t aware of, that are coloured by creativity, wit, and originality. There is a saying that says all roads lead to Rome… the phrase was coined because the Romans designed their empire so that every road radiated out from the capital. What it suggests is that all methods of doing something will achieve the same result. Or in other words, all paths lead to the centre of things.

if that isn’t explanatory of how a CFer manages to live a sort of pretend or parallel life to others, I don’t know what is… 

I spent my life following my family to third world countries with suitcases packed with 6 months’ worth of medication instead of the books and games my brothers carried. I flew in the peak of winter with a mask when my family flew without. I have hidden heat patches under my clothes to control my pain, in order to follow my friends into festivals that lasted all day. I took breaks and skipped out on mini-adventures to made sure I had time for therapies and self-care on weekend trips to Paris with my best friends. 

Despite all the difficulties, I still did all those things. I still went to all those places. This summer I was planning to go to Portugal with friends and attend 2 three-day festivals, with a group of friends who care enough to give me the space to take another road, but to be dancing with them at the end of the night regardless. And that’s how you’re going to win the battle with CF. Aiming to eradicate or deny it, will stop you from incorporating it into your actions and your path in life. It’ll become a barrier. That’s just going to feel like a war within yourself. And it might just be a war you won’t win in the long run. But I’ve had my glass of champagne by the lake since arriving and I feel like I won this battle. The fight is still going on, but I got to my little slice of heaven on earth despite a rampant virus that specifically targets my weaknesses.

I hope you Cysters and Fibros find a way to have a change of scenery in this time without having to risking your health for it. Or if that doesn’t interest you and you have created a bubble of epicness in your own home, I hope you continue to enjoy that. 

This is a fucked off year, and you shouldn’t feel like you have to lead a certain life despite this pandemic. Maybe we can drop the act that life is perfectly dandy, for one year? We’ve been interrupted, if we just accept it and make a new normal for however long this thing lasts, we might be less disappointed or disillusioned by our present. 

If you’ve been able to travel and go explore safely despite the pandemic, tell me about it! Let us all dream!

I hope you’re having fun somehow, somewhere.

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…

about Cystic Fibrosis

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…

about Cystic Fibrosis, discussing the Medical Industry

Respecting Anger: The Importance of Negativity

by Ballistic Mitosis4 Comments on 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…

about Cystic Fibrosis

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…

about Cystic Fibrosis

a Threat to my own People

by Ballistic Mitosis6 Comments on a Threat to my own People
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

Throughout my whole life I have, consciously, met two other people with Cystic Fibrosis.

Because of the faulty mucus we create, little bugs that would be harmless to healthy people, can create chain reactions in our lives. Little lung infections snowball into pneumonia and within days they’ve awoken a black hole and we have no choice but to fold to their demands. We then depend on mechanical antibodies in the forms of drugs and antibiotics, but because we have been taken these our whole lives, our personal little germs have become stronger day by day. Like villains in comic books, they mutate.

Usually, in our lives, every infection gets worse, and every treatment gets harder.

The danger comes from the possibility that adult patients may pass on their now-drug-resistant bacteria to younger, and in a way, purer patients. This illness comes in so many different shapes and sizes that we already all experience different degrees of CF, and what makes each experiences very different is how many infections one hoard’s over the years. So, in a way cross-infection is like fast-forwarding your fall from health.

the history of cross-infections is a dark subject in itself…

In the 80’s and early 90’s there were summer camps specifically for kids with Cystic Fibrosis. The dream behind this initiative was to help kids connect with each other, but as we know, the road to hell is paved with good intentions. In these camps we saw hugs become translators of death, we witnessed that simply sharing toothpaste could become a weapon against some, it is where we understood that staying in one cabin for two weeks could change the future for many children. Without realising it, these camps became breeding grounds for pseudomonas and cepacia and the lives that were contaminated, were probably never free again.

(there are a few infections that we have no cure for to this day)

These camps had initially been moulded to help strengthen patients whilst fostering an atmosphere of adventure and fun that distracted from the differences of our realities compared to our peers. Scheduling was structured to include time for therapies and aerosols. The activities were physical and focused on endurance instead of power, whilst always keeping the games away from mud and dirt. In other words; joyful physiotherapy. The food was high-fat and covered in salt, which to be fair would’ve been enjoyable as a kid.

french fries were religion in my community

It was a dream, a hope when we still didn’t know a lot about the illness. But as science pushed through the mysteries, we understood that the only people that could understand us were also our biggest threat. To put it simply the dangers of cross-infection between our own feeble and wet lungs were far greater than anything we could do for each other.

Since the 90’s we have come a long way and CF patients take the responsibility upon themselves to not cross paths, understanding that what we have in our lungs could actually hurt others who are trying to survive just like ourselves. The fear of truly harming a child terrifies me. It has in fact, convinced me to avoid all social gatherings that are specifically about CF. And I know many other adults in my position, who have done the same.

A rule that is also applied to medical conferences. Organisers are usually aware if there are patients who decide to join and they are obligated to warn CF patients about each other. We live by the 6-foot rule. A little bubble of safety.

a concept not too dissimilar from the social distancing we see now…

I have friends who have CF, but calling them friends is a romanticised illusion of what I actually have with them, they are penpals. They are all halfway across the world, far enough to know I will never be tempted to say “fuck it” and go see them.

But even without ever meeting them, I know they understand how I feel.

And I know they understand how I hurt.

talk soon

Ballistic xx

about Cystic Fibrosis

The C(F)loak of Invisibility

by Ballistic Mitosis12 Comments on The C(F)loak of Invisibility
The C(F)loak of Invisibility

the F is silent

let me set the scene…

It was the night of my 24th birthday, and we were celebrating. We were at the bar with a shot of tequila in the air cheering to any excuse to let go and dance the night away. We had the usual gang, our boys who were still talking about last weeks football, and the girls, feeling ourselves in our best sparkly little dresses, one was already chatting up the bartender and the other was defying the advances of someone else. On top of that we had two newbies… Friends of a friend, I didn’t know them, but they were sweet and both joined in the birthday cheers.

sadly my temper flipped just a few seconds later…

One of the two newbies then came up to me and handed me a drink. I’m not going to pretend that I remember what exactly lead to his foot being jammed in his throat and it is irrelevant to why I got angry. The anger that came up was already bottled up inside from my past. Which meant this wasn’t his fault. We had all been drinking and the music was loud, confusion and intoxication coloured the conversations around. So, let’s just say that he did not know anything about me before he said, “well it seems like you have a lovely and easy life.”

sometimes I do question my own psychological response to anger, because on the moment all I did was stay quiet, nod and smile when in actual fact, I was raging on the inside

In all honesty, I was hurt. So, I ended up yelling at him, walking away and simply getting on with my evening. My friend wasn’t surprised by my actions, knowing me, but she didn’t understand why I was offended by someone not seeing my illness.

I don’t think I even knew why I was so hurt in the moment…

so, I unpacked it…

I was born with an illness that is incurable, degenerative and painful, but none of this is visible to the naked eye. All of my dysfunctions are internal. Yet, the damage is extreme, especially over a lifetime of forcing our bodies to continue pretending to be normal. One of my most problematic areas is my lungs, they have been collapsing day by day, and recurring serious infections have eaten whole sections of my lungs over the years. Breathing capacity I never got back.

I don’t know how to explain how it feels to not be able to breathe in life, but the only thing I can compare it to is trying to breathe through a wet cloth

it is difficult

and it is frightening

What threatens me is within my body. It is simply not capable of functioning on its own, medicine helps, but it will never be independent or free. And all of this is invisible.

In a way, I felt like it was real only for me.

I once thought this was a blessing.

It meant that I could keep it away from my friends. Kids growing up didn’t know how to handle it and it either turned into something that was taboo or something I was bullied for. So, as a teen, I started to choose who I shared it with. And when I moved out the country at 18 I tried leaving it behind but the secrets just threatened my new friendships. It was pointless anyway because they always ended up finding it out in the end.

I thought it would free me to hide it, but the secrecy was just a different type of shackle

As an adult, I avoided bringing it into conversations because it changed how my friends acted around me. I saw partners turn into nurses and sign the death sentence of our relationship. I had friends who simply didn’t know what to say after I had told them, forcing both of us to sit in silence across french toast during brunch. The reaction I hated the most was when I saw pity in my friend’s eyes. I was proud of who I was despite my illness, being defined by it was my worst nightmare.

And losing my identity to CF after I admitted what I had, felt like the worse punishment possible.

What I realised hurt me now on my 24th birthday, was that I had erased, from my own history, the battle that had made me into the adult I was. I had removed it from my image and my identity. All this time, I thought I was hiding my biggest weakness, when in actual fact I was ignoring what had made me strong. Projecting a curated image of who I was had just been an extra safety blanket to help me feel normal growing up.

in a way it was only denial

So, yes, I had been lucky to not be defined by my illness at first glance, but it also made me feel very alone. Dividing my own life in these two separate worlds made me feel detached from myself. It’s also why I was such a terrible patient; I hated stepping foot in my CF nightmare, and often I lost control of my own emotions and rage when I was confronted by the realities of my illness. I had separated myself from it so much that I felt insulted to be categorised by mutation.

And that is how I unconsciously hid a massive part of myself from my own reality.

talk soon

Ballistic xx

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Join 95 other subscribers.

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The Tale of the Emla Fairy

I never thought that I would write something about my fear of needles and it end up being a cute and positive post. This was a phobia that controlled me emotionally for my whole life and it could truly make me mean and nasty. I didn’t expect getting past it now or anytime soon, really.…

about Cystic Fibrosis

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…

about Cystic Fibrosis, Coronavirus Isolation, Life in London

When My CF Met Miss Corona

by Ballistic Mitosis2 Comments on When My CF Met Miss Corona
When My CF Met Miss Corona

Up until the 10th of March no one had addressed the issue of covid-19 specifically in regards to people with immunodeficiency disorders.

I had discussed the subject with my mother as I was getting worried about being in London. Public transport felt like a monstrous infectious tunnel that was growing more and more dangerous by the hour and I had to travel for work like most Londoners do. So on the 9th I spoke to my work, as soon as I explained the dangers of having CF during corona they agreed that it was best for me to stay home for a while and we decided that night was going to be my last shift.

My life now revolved around Brixton and SW territory.

On the 10th of March I received an e-mail from my doctors in Switzerland. They had released a letter intended to be used for work, stating that self-isolation was no longer a choice for some, a letter that allowed very little space for protest. As of then, I still hadn’t heard anything, and with the power of one abrupt e-mail I had to acknowledge the danger I was now in. I rarely put my illness before my personal life, but that day I knew I had to.

That started the two weeks where I was isolated but most weren’t.

In the e-mail I received, there were also specific rules and life hacks to follow to ensure our personal safety as it accepted that the outside world was now too dangerous and doing very little to change that. Receiving it felt almost ironic as I had applied these rules for most of my life already, cleanliness was never an option for immunocompromised people. This handbook really should have been sent to everyone that wasn’t us, so that the public would limit how much they spread the disease.

but whatever; denial of the gameplay that is herd immunity is still going strong and people don’t actually care until it affects them personally

A few days after I received the letter from Switzerland, the Cystic Fibrosis Trust in the UK released a statement that we should prepare for 12 weeks of this isolation. Still, the world outside our community was laughing at the warnings of this disease.

That is when my resentment for the world was born. I had too many friends shrugging off rules of social distancing in the world of partying, others stupidly defiant of the quarantine regulations when travelling, and even worst the one’s calling it an insignificant little flu. My life had already been turned upside down, and they were just part of the growing problem. So, let’s just say I wasn’t mad at being stuck inside and having a marvellous excuse to avoid the selfish reactionaries.

Despite me being worried and understanding how serious this was, I decided to risk it on Friday 13th. I wasn’t ready to give up socialising before my peers just yet. I had a plan.

That night, one of my closest friends came over for dinner.

She knew about my situation so I knew she would be careful and considerate of my safety. And she was. But I still warned her that I had to keep my distance and we had to follow a few rules. It was the only safe way for me to have any type of contact.

The rules were: she had to come in and immediately hang her coat in the empty room in my house. Then before she touched anything, she had to wash and disinfect her hands. We then stayed in the kitchen to avoid immediate contact with fabric. Back then the belief was that the virus could only last a couple of hours on fabrics. We ate dinner in the kitchen, on opposite sides of the table.

There were a couple moments after dinner where we would lean on the table for comfort whilst chatting, but when we both did it, it would bring us just a little too close and I had to interrupt the discussion to move my chair back. I apologised for having to do it and we both laughed it off because the company was more important, but it was just different.

At the end of the evening we moved to the living room so that she was a little freer to move around and play with the kittens. A couple of hours had gone by since her arrival and we assumed it was safe. I stayed in the armchair in one end of the living room and she was on the couch with the kitties. The hardest rule of the evening was that she wasn’t allowed to kiss the kittens, I didn’t have the heart to disinfect them after she left.

We sipped our wine and it almost felt normal but we were just ignoring the darkness that was going to colour the near future. But when it came to saying goodbye and we stood 2 metres apart to simply wave, reality was unavoidable. With a huff and a sigh I closed the door and that was the last friend that stepped into my home. As much as I applied the rules, I hated myself for it.

I am so grateful for my friend. I will never know what level of security allowed me to do this and stay completely safe but it was a success in the end and I never got sick.

As much as I know she would have done much more for me, and that I have other friends who would too, none of them have to put this much effort in other friendships. And I am so touched by the friends who go that step further, because they really don’t have to. I hope they know how important they are to people like me.

So in conclusion, Mis Corona is a pain in the ass and right now and she wants her power to be heard.

talk soon

Ballistic xx

about Cystic Fibrosis

Medical Disclaimer

by Ballistic MitosisLeave a Comment on Medical Disclaimer
Medical Disclaimer

Thursday 21st May 2020

Hi ! Welcome back!

My first thematic post on this blog will inevitably be about my medical condition. So, before I start discussing that subject and entering any medical debates on here, we need to set down a few guidelines and one definite disclaimer.

These are not rules; the intention is to prevent arguments as we must acknowledge that these are touchy subjects for most of the people affected. Yes, discussing personal health is very sensitive and private, however, we must be able to find a way to speak to each other about it without finding offence in each other’s words and creating deeper divisions in already isolated communities.

art by Tess Castella

Dark divisive vines weed through conversations when we start to compare our treatments, our freedom and our scars. The tension comes from our social tendencies of colouring people as good patients and others described as defiant or challenging, the difference you ask? The latter challenges the suggested rules of doctors. Whether it be about medical treatments or lifestyle debaucheries.

puff puff pass the spark

There should be a focus on finding a way to connect as humans again, without feeling like we are going to be scrutinised for our choices when we finally get released from the pressures of being under age.

The things that are discussed in this blog are intended to be read as testimonies of personal experiences and struggles. No one here is claiming that what works for them will work for others too. These are opinions, not to be confused with professional medical advice.

MEDICAL DISCLAIMER

We all struggle. No comparison needed there. All of our varied experiences and past deserves to be believed.

why is this important?

Nowadays, there are so many treatments and interventions available that it has created a sort of social understanding that if you can treat something, you must do it, it is only logical. Why wouldn’t you, right? Well, the reason why I need to make this disclaimer clear is because I believe people are entitled to handle and deal with their own conditions however they want to, without having to fulfil any type of pre-made conceptions of what healthcare should look like from the outside.

An extreme I will firmly defend.

Additionally, the way someone manages their disease should not feel like a comment, advice or attack on anyone else’s situation. An illness is never exactly the same for two people.

Let alone hundreds of thousands.

We should be able to explore different ways of managing our difficulties and pains without it being an attack on the medical system and a sort of fuck you to doctors. In my case, there are some medication that I take exactly like I am prescribed and a on top of that I am a big fan of herbal supplements and homeopathy.

Both laughed at by many doctors but I swear it helps me…

So, my point is you should be free to make all the adjustments in the world to your own healthcare, and to take it a step further … you deserve to have the right to share that experience and talk to people about it without getting attacked.

That is the sort of protection I will uphold on here.

And that is the type of kindness I want to see from people who interact with this blog.

one minute of silent appreciation for the Medical Industry

just one minute…

Listen, I was diagnosed at 11 months old after I had completely stopped growing and caught pneumonia. And medicine is what brought me back. I am now 24; a grown adult with multiple jobs and an active social life. So, I understand how responsible they are for helping me survive my childhood.

For that I am grateful.

But what happens with child patients is that for a long time (at least a full decade) people tell you what to do, how to medicate, and essentially how much of a child you get to be. This makes complete sense because kids at that age do not understand the world behind therapies. But as that child grows, so should their authority over their own life and especially what degree of medical intervention they will have to experience. Problem is that most times, they are not given that authority.

So, however grateful I am for the doctors that helped, I will still put into question anything that becomes problematic; even basic and essential medication

As patients live with their illnesses as one, we come to understand it better than doctors. To feel it instead of quantifying it. Or even see it as a little ghost in the corner of your bedroom. However, sometimes it is really challenging to vocalise how your body feels on the inside.

Are those my kidneys? Is this muscular? Is that nerve pain dangerous?

Sometimes we simply don’t know how to explain it, or we explain it in the wrong way and it gets pushed aside as unclear or just an extension of another problem. Often if our problems can’t be resolved, in the most typical of ways in regards to that medical condition, doctors will just prefer to give up on resolving the issue, rather than accepting non-westernised, or controversial treatments seriously.

Regardless of whether or not a patient brings those other types of treatments into discussion.

But more importantly doctors are extremely reluctant to question the medication that is certified and already on pharmacy shelves.

And that is dangerous.

Will this be the ultimate battle of experience vs. knowledge?

Who will win?

just kidding…

pharmaceuticals are money we know who wins

I hope you can see that the intention behind this post was to ensure that the blog is kept as a safe space for all loud, hot-headed and slightly dysfunctional weirdos. One of the ways I manage how isolating my illness feels, is by allowing myself to always express my feelings and emotions instead of keeping them inside.

I tend to bottle up my chronic pain already, and my back is getting a little tired, sorry.

I can sometimes be seen as controversial within my CF community, but I have found a way to live that suits me and I don’t want to be attacked for that anymore. And I’m hoping I’m not the only person that decided to cheat on their medical ball and chain so that we can talk and compare how amazingly different lives can be.

Because if the status quo doesn’t fit you, it doesn’t mean nothing will. But challenging doctors can be scary, and without a strong support system I understand why some people wouldn’t risk being uncomfortably alive for only a maybe when you know how sick and still weirdly alive someone can be. And it’s not an enjoyable purgatory. If you’ve been told your whole childhood that you’re so broken that intense medical intervention is the only way to survive… you tend to believe it.

power dynamics in hospitals…?

If anything, you can read about my experiments through this blog. And make up your own mind about it.

thanks for reading until the end!

speak soon

Ballistic xx

  3. J’aime cette lettre parce qu’elle est pleine de confiance et de force. Elle peut paraître pessimiste lorsqu’on lit “about the…

  4. Great to see a new post again and hope it will continue. That will be a nice change and a…