Holding on to the small things when the big things are unbearable

#3 I’m in love with life…and all it’s little things

Hi, friend! 💌

As I write this, mum and I are watching the Windrush episode of “The Repair Shop” on BBC. One of the women wanted a clock restored and particularly wanted it to chime the way it used to when she was a child. A clock that was the first “proper” purchase her parents, who came over to England on the Empire Windrush, made with their hard-earned money. When she saw it restored and heard the chime, she cried. And when asked what she was thinking about, she reflected on how the sound brought back so many memories of her mum and dad, and then said “the simplicity of life”.

As is the point of The Repair Shop, the whole episode has been full of people bringing seemingly simple, inconsequential objects from their childhoods, things that meant the world to their parents or represented something about them. A father’s worn-down passport, a grip (which is how Caribbean’s referred to a small suitcase in those days!), a radiogram. All things that seem…normal? mundane? insignificant. But of course, were hugely meaningful to them.

It brought me a lot of joy to be able to hear about the ways in which my mum related to each person, the objects (literally all of them!) that her family had something very similar, the similar journeys my nan and grandad took, the similar paths they walked, the similar struggles they experienced. I learned a lot about my family just through watching this with her, and it felt really special.

My eyeline is intentionally filled with things that remind me of what is important. Being bedbound, it’s vital that my surroundings are joyful and light, and among the medical supplies and devices, my room is dominated with things that represent me and my family.

No matter how many side-eyes I get from others, I am very determined to enforce keeping it to my liking. If you walked into here, the first thing you might notice is the boldness of my sunflowers.

If you looked to the left, there’s a chance you would see my sunflower painting before you saw my feeding equipment. I have pictures of me and my family, everything from my graduation to normal, calm days I love to remember. I have cards from loved ones right in front of me.

My blinds stay open at all times to ensure lots of natural light, and to guarantee beautiful light patterns when my situation has me up at 5am. I wake up to it all, I go to sleep to it all. I am surrounded by joy, even when I am consumed by pain and trauma.

And that joy comes from such simple things.

The magical 5am light pattern I will always get a picture of if I’m awake for it.

The oddest things will end up meaning the most

Mum once kept the envelope from a card I gave to her. She kept it stuck with a magnet by the side of her bed, no card in sight, purely because I had written “to the best mum in the world” on it.

Just this past Father’s Day, dad gushed to everyone who would listen about a card my sister and I gave him, simply because it had a greenhouse and vegetable patch and a shed on it, it was so representative of him.

There are always super simple things that will mean the world and you just never know what they will end up being.

So, what is life really about?

It’s really about the inside jokes and the offers of a cuppa and the normal evenings with the comfortable silences. The weird but sweet nicknames and the shared interests and the stifled laughs. Even the simultaneous startles, you know when there’s a loud noise, the way two people can look directly at each other because you are each other’s safety and you want to know if: 1) the person is okay and 2) they can soothe you and tell you what the heck that noise was.

It’s feeling truly understood when you’re feeling so painfully alone, the words that make you go “wow, they get it, I didn’t even have to explain”, the ones that feel like a warm hug. It’s the conversations that make you feel seen and heard and loved. It’s the “I’m here for you” “I’ll always be here” when you know they actually mean it, and the little texts you know are sent every now and then, just so you remember that they mean it.

It’s my cat’s little (read: huge and loud) meow greeting when she comes upstairs just to see me and chat. The sound of my sister’s keys when she arrives for a doorstep visit or my dad’s when he arrives home from work. Even the annoying hum of my feeding pump because it’s the reason I’m still alive.

It’s the “you’re the best Aunty in the galaxy” even though you feel like you haven’t been able to give them anything in such a long time. Even though you can’t run with them or spin them around or spend much time with them at all. It’s the joy that still spreads across their face when they see you even though you feel like you don’t deserve it.

And…the worried look on everyone’s face when they think you’re not going to make it, because they will suffer if you’re not there. And I know that doesn’t sound like a small, simple thing but it kind of is. Not the situation, but the fact that your existence is what they value. Not what you can do for them or the job you had to leave or the car you never got to buy. Not the amount of work that they have to put into taking care of you and the fact they have to worry about you every minute of every day. You. Just you. Your existence. The fact that you are alive — that simple fact is all they care about in those moments.

May that novelty never ever wear off. May we never ever forget that our and their mere existence is the thing that matters.

It’s the precautions that are taken without resistance or hostility, or even having to ask, because they know how important it is to protect you. It’s the “I’m so angry for you” when you’ve been harmed again. The validation in that statement. The comfort in the fact that they see it, too.

It’s the “I read your piece”, because they know how much writing means to you. It’s the feeling when you’re able to see the impact of something that you did, you created, you wrote, you built. It’s the “thank you for writing this” and the “I feel so seen”. It’s being able to alleviate a little bit of someone’s pain.

It’s the “I saw this and thought of you”. The little check ins in the form of a picture of their holiday or their garden or their pet or a funny meme, just so you know that they were thinking of you and wanted to make you smile. It’s the lounger chair you find out is brought out at every single family garden gathering just in case you’re able to be there. Every. Single. One.

It’s the “I’m so glad to see you” and the “you are so loved” that comes out of a person that you know isn’t usually openly affectionate, who may not have found it easy to say that out loud and in front of others but really wanted you to know because they know it’s hard to keep going.

It’s realising your own progress, even progress no one else can see. It’s that feeling when you’re able to actually fix something or make something 1% easier for yourself or someone else, especially in a situation just filled with unbearably unfixable problems.

It’s the help and support and encouragement that comes without resentment, without condition, without judgement. It’s every single reminder that you are not too much, your needs are not a burden, your existence isn’t unpalatable, you are not useless, everyone does not hate you…even if those reminders have to come from yourself.

It’s my mum saying “we have an appointment”. We. Always “we”, never “you”. Us. Together. Always. It’s the moments where you know you’re not alone in this fight that is taking up every piece of your strength.

It’s the joy I find in the abilities I still have and the love I have towards myself for the way I fiercely protect them. It’s my wheelchair and my tube and everything that enables me to be alive.

It’s the sunflower pictures. The sky pictures. The little gestures that are so clearly meant for you.

It’s being wrapped in a blanket while listening to the rain and the thunder.

And it’s the light patterns on the wall at 5am.

It’s everything. All of it. I really bloody love being alive. I love it. Through constant pain and suffering and trauma, the simplest things remind me of what is important. I could go on forever naming little things that make this life beautiful just from this bed, and I am so grateful to get to experience them.

Although holding onto these things is essential for keeping going in a life like mine, I do believe everyone should take at least a minute every day just to pay attention to the simple things that bring them joy, the moments they usually let pass them by without a second thought. I hope this reminds you to do so.

This week, I challenge you to go and find the simplest things and revel in the joy of them.

Lots of love,

Cyrene💘

The sunflower display set up directly in front of where I lay, temporarily including the beautiful real sunflowers my sister bought me.