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


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



A Lil’ Introduction

A Lil’ Introduction

Monday 18th May 2020

Hi. Welcome! And thank you for taking the time to read this!

Whether you’re reading this because you’re with us from the beginning or coming back to it to see where we started, I appreciate it.

I had to think for a while about what I would write here. The first post. Worried I would go off on too many tangents, confuse you and ultimately completely fail to start on the right foot. This is basically my pick up line to you, a reader, so will I be obnoxious? Or sweet and endearing?

¯\_(ツ)_/¯

Not many people have called me sweet in my life so hopefully there is a first for everything.

so here goes…

Ballistic Mitosis is about freedom of belief.


So what is this blog going to be about?

I want this space to be about liberty of thinking, unrestrained discussion and questioning of the most common and basic things in life. A space for limitless realities.

I had to follow strict rules when it came to growing up and having to take care of myself because of a condition I was born with. In a world where the median shapes action, the individuals who aren’t part of the norm suffer because they are doubted or pushed aside because a medical diploma trumps personal experience.

And that is a really damaging concept.

I had to prove my doctors wrong before I was listened to. And if I didn’t have a mother that trusted me and supported me, I wouldn’t have had the guts to make my own rules.

So, this blog will be my lil’ adventure to independence in my own body and future. And I still have a lot to discover, so it will also be where I ask my questions, and express my doubts too. If you have answers or opinions, know they are welcome here.

What I’m about…

Right now, let’s say we are talking in label terminology, just to get a bigger sense of who I am through a language of cliches…

It’s only the beginning of the blog so I can develop and destroy these words later on, fear not.

Having said that, I understand that labels are needed for some and especially needed when understanding your own person. Because it guides you to realising how the world will see and interact with you.

But it really should only be used at the beginning of this discovery. Being bound to labels can be what leads you to portray someone else instead of being who you are.

so what are my labels?

woman: truest one. I don’t fight it although I do have unpopular opinion about the label cis woman, which I will unpack another day.

disabled: disagree. I cannot possibly explain how much I despise this label.

feminist: said to me as both an insult and a compliment. This is a very divided label and problematic umbrella term but it is not wrong.

communist: a highly dramatised version of my political beliefs, but not untrue.

bitch: I am less than apologetic about my attitude. Simple.

fiery: also true. I believe in fighting for everyone because we are just one earth and one life. And I believe in fighting with passion and with the heart. Not many people agree on that.

rebel: or purposefully contradictory, stirrer of the pot. Not necessarily untrue, but attributed more because of my truthfulness and simple opposition to follow the status quo instead of what I want.

crazy: a label mainly used in response or defence when the problem rarely was myself. You probably know what I think about this…

tease: a word used by men that didn’t know me, simple strangers. An indication of their assumption of me. But still my label somehow…


anyways…

I truly hate summing things up, so I think I’m going to stop trying to. This was pretty random and I’m not sure this has helped you understand me more. This blog won’t be about one simple thing, it can be about anything and everything. One day I hope you will even suggest things to discuss that you want to read more about. Or even a place where you could post your story.

The options are limitless.

Hopefully you will want to read more…


Thank you for taking the time to read this until the end…

I hope you read on and join our little bubble and subscribe below!!


speak soon

Ballistic xx