Let life-altering things be life-altering

#8 Acknowledging the difficulty, realising that I’ve been holding a lot back, and being ready to show up as my whole self

Hi, friend! 💌

My original plan for these letters overall were for them not to be centred on certain parts of my life (i.e. illness).

But right now, that feels inauthentic, and I think it’s quite central to why I am struggling to show up here. I am trying to remember that I am a whole person, and in order to show up to this space whole — which was, is, and always will be my aim — I need to allow myself to discuss some of the more grisly parts, too.

To try and write this letter about anything else, or pretend I’m enthusiastic or “finding joy” in this situation when that feels impossible, would go against everything I believe in, and I’m proud to have been able to have noticed that, and to have begun this slightly nerve-racking letter.

“Let life-altering things be life-altering”

I have a brain tumour.

It took me a long time to be able to say or even type those words.

“I have a brain tumour”

It is my fourth tumour, I’ve had it for three years, it’s thankfully non-cancerous (I don’t like the word “benign” because I do not believe that the phrase “brain tumour” should be associated with any word that means “harmless”), and I don’t mention it much because it has thankfully been stable since diagnosis.

At the beginning, I would talk around it like “I had a brain scan and they found a tumour” or “y’know that tumour they found on my brain scan”, but due to recent events, I’ve been leaning into saying it as it is, as acceptance is key (while often extremely challenging to reach) in situations like this.

A brain tumour is some people’s worst nightmare, and I was and am no different, it was a huge fear. It still is, ironically. However, although being diagnosed was hard, it has truly been the least of my problems, my most well-behaved health issue, for the entire time I have had it.

Until now.

For three years, I have been on what is called a “watch-and-wait” plan, where they monitor it regularly through blood markers and scans. If it’s stable, you stay on your watch-and-wait. If it becomes unstable…

Well, I don’t know how to put that into words but whatever it is, that is what I am living right now.

It grew

A lot

I am currently waiting for an urgent brain scan, and making huge decisions between medication vs surgery vs ignoring it (yes, I know that’s not an option but it comforts me that it’s there), each choice having it’s own dire and further life-altering set of potential consequences that haunt my every minute.

I am in no way a stranger to life-threatening decisions, but this one is truly the worst I’ve ever faced.

I don’t have many words for how this news and the surrounding circumstances have affected me. Having to continue with many heavy responsibilities, and try to still make space for the things that bring me joy and help me to cope; having to find a balance between not burying my head in the sand/allowing this to wash over me to give me what I need in order to process and make the all-important decision, and distracting myself and giving myself space away from this, reminding myself that life isn’t just a brain tumour, has been hard to say the least.

I have many unanswerable questions like…

What do I do?

Why is this happening?

Are the medical team going to treat me well? (considering I’ve never had to ask them for anything)

And many, many “what ifs”.

I’ve had to try to balance my needs with my family’s. Honestly, this is a blessing because I think if I didn’t have to consider them, I would probably be trying much harder to completely ignore that this is even happening and that wouldn’t have ended well in any way. But I know they need me to press on and push to get next steps in place as soon as possible. So I swallow that temptation and I do what I know needs to be done, and I let them do the same.

I adore people asking how I am, I appreciate the love and care and concern I’ve been shown, AND it feels like a question that is comical at best, and mocking at worst. For a long time, it has felt like a krypton-factor-esque (complex) puzzle that I had to figure out the best formation of words and sounds that would portray what I am going through and how it’s impacting me in a quick way, without saying too much, making anyone uncomfortable, or lying and say “I’m good”. I didn’t know there were more layers to add to this feeling, and I struggle not to laugh in response to anyone asking me that elusive question.

So, what helps?

As always, I just try my best to find ways of coping, ways of savouring any piece of calm I find.

I try to read my previous writing. Partly because it boosts my confidence and reminds me how much I love writing, partly because I find it soothing to have words that describe a little bit of how I’m feeling or say exactly what I need to hear which, a lot of the time, is what I aim to write. It feels like a hug from past me. Holding onto the small things when the big things are unbearable is one I love to re-read, yet I sometimes can’t because…well I’m unsure why. Maybe because the small things become unbearable or unreachable at times, too.

I try to read other people’s writing. I thoroughly enjoy consuming other people’s work, and spaces like Substack allow me to do this in an accessible way. I am also on the hunt for a book. It’s not a specific book, it’s more of a vibe I’m looking for, let me know if it rings any bells — I want to try to read a fiction book that is not a mystery or horror or romance. I’d like it to be a personal journey of adversity, someone goes through something that changes them and…well that’s it to be honest, let me know your recommendations if you have any😂

And I try not to isolate myself, no matter how tempting that may feel. Everyone in my support system knows I am extremely slow at getting back to people, I do not do well with phone calls, and they are all mostly accepting of these things. I find accessible ways of keeping in touch with my people and recognising the signs of love when they arise.

A few days after receiving the news about the brain tumour growth, I was lucky enough to feel up to another garden visit which was a much-needed breath of fresh air. It helped me to blow the cobwebs away, and gave me the perspective I needed to begin processing all of this slowly.

Since then, I’ve struggled a lot, especially when the reality began to hit. But every day, I do everything I can to soothe myself, to help myself, to make things even a tiny bit easier or better. I won’t even try to go into that, but I go to sleep knowing I did my best, and knowing that looks different each day.

It helps.

“Let life-altering things be life-altering”

I think it’s almost silly that I try so hard to act normal when none of this is normal. I am so well-versed in constant, huge curveballs and life-altering happenings, in adjusting to inconceivable circumstances and digesting life-changing news, and yet I still have to remind myself of this. I still have to remind myself of the hell I go through…even though I never really forget. It’s confusing.

Sometimes, when you’re going through something for so long, you normalise it (to cope, I think). You underestimate it. You get increasingly frustrated with other people for doing the same, you know when someone else is looking at you, expecting things from you, or grossly trivialising what you are going through. You can fiercely protect yourself from their judgements and remind them “don’t you know I am in unimaginable pain”, yet, when it’s coming from ourselves, it’s harder to escape.

We have impossible expectations for ourselves

We make silly rules for ourselves

We say “I don’t know why I’m so upset” “I don’t know why I can’t sleep” “I don’t know why I’m finding everything so difficult” when, hello, someone has died or our life is upside down or…our brain tumour has grown.

My point here is to let life-altering things be what they are.

There is no use in trying to bury your head or pretend it’s not happening because your body knows, your nervous system knows, and no matter how much you try to ignore it, you won’t be able to, not really.

There is no use in trying to carry on like nothing has happened.

There is no use expecting yourself to follow some arbitrary set of rules you set out when things were different.

Let life-altering things change your life, change you, because they’re going to anyway and resisting it only increases the pain.

Here’s what I’ve realised…

What worked before might not work now. As things happen, as things change, I and my approach must change with it — a realisation I constantly come back to through my circumstances.

From the moment I created this Substack, I closed myself off from writing about my illnesses here or them being central to any piece because…well, possibly because I may have wanted to keep this an “uncomfortable-topic-free space” and pander to those who have no desire to be reminded of people like me, which in itself is an uncomfortable truth for me to face because that’s just not something I’m used to caring about😂 yikes!

But the reality is that so much of my worldview is shaped by them. My entire days are shaped by them. And I am shaped by them.

There’s no escaping, and there’s no point trying to either, and I say that in an “acceptance of reality” and “not fighting impossibilities” way, a “self-love-filled”, anti-toxic-positivity way, not a sorrow-filled way.

If I’m going to continue to try and use this space to look at my life and explore my interests from any and all angles and lenses (which I am), that has to include illness and disability, otherwise I am not being truthful or authentic — I am not being led by my values.

So, while these letters will remain exactly as they are — focused on whatever is on my heart and mind, whatever stories and lessons and musings I feel called to share, I am adjusting my own expectations of myself and opening them up slightly. I am widening the net is all. And honestly? I’m excited about the additional lessons I could share now I’ve broken down these barriers.

I am extending endless self-compassion through these realisations because I am still at the beginning of my journey here. I am still in the infant stages of sharing my writing in this way, of sharing myself in this way, and I have to give myself space to figure it out.

I said at the beginning of this letter that “finding the joy” sometimes feels impossible. My joy today has been finally being able to write something — this letter. The pride I feel for figuring out one of the reasons I was finding it so difficult to write. And the trust I have in myself that when I say, through sobs, “I don’t know what I need, and if I knew, I would move heaven and earth to make it happen”, I mean it.

I will always do what I can for myself. I hope you will do the same for yourself, too.

Lots of love,

Cyrene 💘