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?
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