Mermaid tails & soul-deep exhales

#6 How true familial love can help you put your broken pieces back together

Hi, friend! 💌

I recently made what feels like the most aligned decision of my life so far. This decision is huge, and is going to have a ripple affect on every part of my life, and I know with every piece of me that it is the right path:

I decided to scale back on medical contact as much as is possible, permanently, and take a more palliative/holistic quality-of-life centred approach to my health and life.

I’m still figuring out what this means for me and what it looks like (I do talk about it in a bit more depth on Instagram and will continue to do so as I process and make sense of this next phase of life).

What I do know is that it is centred on reducing suffering and increasing joy, and today I wanted to share a joyful memory of the best day of the year so far, something that would not have been possible without me making that decision, and some wonderful key takeaways and lessons I’m processing from that day.

I was actually meant to share this last week, but circumstances got in the way. The lovely Janelle of because she has to shared a piece last week about her most recent memory of giddy excitement, and asked her readers when the last time we felt giddy about something was. I commented, excitedly telling her I was sharing a piece that could easily be a response to this question.

At first, I was slightly tense about having mentioned this to anybody, only to not share it on time. But in the spirit of being kind to myself, I honoured those feelings while trying my best focus on the gratitude of the accountability mentioning this to Janelle provided.

At the beginning of July, I also spoke of feeling excited about what else I had planned to share on here that month. Of those 3 or 4 posts, I shared one, which was 2 weeks ago: How my parents saved my creativity. Again, it’s something I wasn’t too happy about obviously, but these things happen, plans change, curveballs arise. I can only do my best!

Anyway, this is a bit of a long one so feel free to listen to the voiceover instead! It’s completely up to you, but if you do want to listen from here onwards, start it at 2 minutes, 6 seconds.

A mermaid tail?

A while ago, before I found out about Halle Bailey’s badass portrayal of Ariel the Mermaid, I had the idea to buy a mermaid tail. It was probably a joke between me and me at first, but I realised it was actually a really good idea. If my legs were going to be useless, they might as well be pretty, right? I might as well take full advantage of mobilising without them.

Just before Black Friday 2022, I found the perfect one! It was a tad on the expensive side to me, but as I said, Black Friday! I waited for the sale to start, and snapped up not just the tail, but a matching pair of leggings, bikini top, and hairband.

At the time, I was deteriorating very quickly and honestly? It was a bit of a daft thing to buy because it didn’t look like I had any chance of living to wear it anywhere. But against all logic, I ordered it anyway.

I did make a plan for it — a plan for a celebration in summer 2023 if I survived. But when this summer rolled around, I realised my plan was also not realistic for me physically, and I would need to adjust it if I wanted to fulfil my wish of wearing and experiencing it.

So where did I wear it? And why?

Luckily for me, in the true spirit of the medical scale back, I had mentioned to my mum while she was on the phone to her sisters, my Aunties, that I wanted to see my family before my Aunt and Uncle jetted off to the US for the summer. Before I knew it, a date was set, a garden gathering was arranged…

And I decided that I was going to wear the mermaid tail😆

I was keeping it a secret from most of my family, and I was so excited.

My mum, however, was mortified this entire time — when I came up with the idea of buying one, when she realised I was serious, when I found the perfect mermaid tail, when I spent money on it, when it arrived, and especially when I told her my original (very public) plan for it😂 she seemed to not want any part of it, nor did my sister. My dad was a bit baffled as to why I would want to do such a thing, but did willingly agree to take me out in public with it😂. Anyone else I secretly told was a bit stunned at the idea. But I was determined to own and wear this bizarre outfit.

As the day came closer, I got more and more excited, and mum cringed a little every time I spoke about it.

A few days before, I asked her for a favour: “if I become hesitant, please remind me how important this is for me. Please remind me that this is something that feels so ‘me’, and I don’t get any opportunity to do anything that feels this ‘me’ with our family. Please remind me that this is going to be a beautiful core memory for my littles, and that is really important to me. And that this is going to bring a lot of joy to the people I love the most”

I told her all the reasons I was doing it, and asked her to remind me on the day.

“I know you’re not fully on board, but this is so important to me and I just know I’m going to have hesitations,” I added.

With a smile, she responded “I’ll try to remember all of that”

And we left it at that

.

A day later, I tried it on. I almost fell off the bed in the process (and was skilfully caught by my mum), I couldn’t save myself as my legs aren’t strong enough and jeez, that tail is slippery!

It was amazing and so joyful because my sister was at the door so heard the whole thing unfold and was in fits of laughter, and dad came into my room once mum had caught me, and asked quite firmly “WHY would you do that?” and I simply replied “because joy” while also in a fit of giggles.

And what’s better? — I managed to get it all on video😂

Let’s fast forward ⏩

On Saturday 15th July — the morning of the gathering — I was not in a good headspace. Some things had happened in the day or so leading up to it and I was feeling very vulnerable, very exposed, very rejected, and I just…didn’t want to go anymore.

But my mum. My wonderful mum. She did what I had asked of her, but she did it in her own way.

Now, bear in mind what I said about how she felt about this whole thing, she still encouraged me so gently.

“It’s okay if you don’t want to go, if you can’t go,” she reassured me.

“What should I do?” I asked. “I was so excited, I was gonna put the mermaid tail in a bag, I was gonna make sure everyone was there before us, I was gonna get in the wheelchair, put it on in the driveway, get my sister to start recording to get everyone’s reactions…What do you think I should do?”

And she simply responded “I think you should get excited, make sure everyone is there, put the mermaid tail in the bag, get in the wheelchair, put it on in the driveway…”

“It’s not that simple, though,” I cut in. “I’m not excited, and I can’t force myself to be.”

She thought for a moment, and then answered “okay, you make sure everyone is there, put the mermaid tail in the bag, and go from there. You get in the wheelchair, you put it on the driveway…”

She was telling me one of the everlasting truths of life, one that definitely doesn’t apply in all situations, but seemed to fit perfectly here: feel the fear and do it anyway. Do it scared.

She was very gentle and kind, she didn’t push me, she did exactly what I asked her to do. I was still hesitant. I just wasn’t in the mood

.

The kindest of kind gestures

We decided to figure out how it would work in the wheelchair, where my feet would sit, that kind of thing. Figure it all out so that if I want to go, I already knew what to do.

We unpacked it all, and at that moment, mum realised I had bought matching leggings.

She did something I never thought she would do — she put them on. She told me beforehand that she was going to try them on, and I honestly thought she was joking, but she did it.

And my mum, the mum who had been mortified for the best part of a year about the prospect of her daughter buying and wearing something so ridiculous, said “oooo, I’m gonna wear these today”.

“She must be joking,” I thought, “There is no way.”

But she wasn’t joking.

And honestly? While she loved it in the end, I don’t think she originally wanted to wear them. I think she wanted me to wear mine, and she knew that if she wore those leggings, I would come. I think it was the perfect representation of “I’m with you, you’re not alone, it’ll be fine. It’ll be fun”

Instead of telling me “you’re making a core memory for your littles”, “this was important to you”, “you’ll regret it if you don’t” that was her way of encouraging me, and reminding me of how important it is and how safe I am.

I think she figured that if we were matching, I would be excited. And she was right.

So we did it. We went. We matched. We made sure everyone was already there so we could make our entrance😂

Mum & I, matching!

And…I almost chickened out, again. Right at the garden gate, I stopped propelling and had a little panic. “I don’t want to do this anymore, stop, I want to take it off”, suddenly feeling exposed.

And my dad lovingly but firmly pushed my wheelchair into the garden so I could be spotted, ensuring that it was too late. And wow, I am so glad he did, because just as I knew from the beginning, it was a soul-filling experience to be in my family’s company wearing that mermaid tail.

Okay, it sounds silly. But that’s me — the silly Aunty. And I got to be that again.

Core memories for my littles, core memories for me

The reactions I got from each loved one as I rolled in were incredible, especially as every single one of their first reactions were purely because I was there, and they were happy to see me. Then came the second reaction — the one after they realised what I was wearing😂. There was an abundance of excitement, laughs, amazement, even a few screams from a grown man😂 one when he saw that I was there, one when he saw the tail, and one when he saw mum’s matching leggings!

I was ran to by my littles; the over-excited “Aunty Cyrene!!” shouts will live with me forever.

That lounger I mentioned in my Substack post on 26th June — “Holding on to small things when the big things are unbearable”?

“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.”

I got to lay on it. It was magical.

In fact, I experienced a few things from that piece. I may not have been told I’m “the best Aunty in the galaxy” this time, but the love in those children’s eyes and voices when they see me…

“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” “the joy that still spreads across their face when they see you even though you feel like you don’t deserve it.”

It never, ever gets old.

I got to be the troublesome Aunty and playfully contradict their parents, advising them about how they can get what they’re wanting and cleverly challenge their parents’ view on the situation (I know, if you’re a parent, I’m THAT Aunty you dread the presents from, or dread your child learning from, sorry😂). Something I have missed and thought I’d never get to do, ever again.

I told my littlest niece, who had had her birthday celebration that morning and had a lovely glitter stamp on her hand, that if she asked for a nice big plaster for her hand, the glitter would not get on her bed while she slept like daddy is worrying about, and she would be able to enjoy it the next day, too, so there is no need to wash it off before bed…while she repeated every word and her dad looked at me evilly😂

And that same wonderful little darling drew me. We got her a drawing tablet for her birthday, gave it to her that day, of course she first wrote her name, and second? She draw ME, majestic in my mermaid tail! What an honour. She was so proud of it, and I am so proud of her.

My sweet nephews helped me with administering my medication into my tube. I adore their curiosity and determination to help in any way they can, and it’s a beautiful, vulnerable, and intimate bonding experience, having someone assist with something so important. It was life-giving, in more ways than one.

And I was taken care of…silently, most of the time, but oh so loud to me.

My sister turned into my primary assistant, the one that spotted the little clues that I was uncomfortable or needed something. The one I clung to when I felt tense at the beginning while I settled, who whispered reassuring words so I would relax. The one who tried her best to stay close-by at all times, or reassure me that she was leaving me under the capable, watchful eye of another loved one.

I was checked in with constantly, so much so that my mum, who works hard 24/7 to care for me day-to-day, sat and chatted and ate and didn’t have to worry about me the entire time.

When it began to rain, a thoughtful loved one with an umbrella appeared silently and stood behind me, holding it above me until it stopped.

I was lifted from lounger to wheelchair when I couldn’t do it myself.

I was moved from down-wind of the barbeque, my wheelchair and I lifted from the grass onto the concrete to take up my rightful place on the lounger on the other side of it, safe from it’s smoke.

And I was asked periodically “are you sure it’s okay you’re right next to the food cooking? Isn’t it bothering you?”

“No. It’s not. Not at all.” I closed my eyes and took in all the sounds and smells and tried to capture every inch of that moment, every wonderful sensation of it.

Any time I was struggling with something or needed to be moved or needed anything, someone was there, happily, as if they’d been waiting years to have the opportunity to do something to help. I hardly ever had to even ask, I was being watched...not nosily or negatively. Lovingly. Curiously. Gratefully, I think.

And to top it off, on our way out of the gate, I was given a beautiful bunch of sunflowers at the peak of their bloom. We left first, and yet all they cared about is the fact that they were able to see me with their own eyes, no matter what length of time I was able to be there.

True familial love can help put your broken pieces back together

Circumstances have forced me to grow up quickly and handle things most people do not have to think about, AND have meant that I am the baby of the family in many ways, despite not being anywhere near the youngest anymore.

I was kept an eye on by the strapping young man I consider my 1st baby, and that is okay. Sometimes, the best thing you can do for yourself and for your loved ones is allow them to take care of you.

I was safe. No matter what happened or what situations arose that day, I could rest assured that I would be taken care of and protected. I was watched over and worried about, and what a privilege it is to be worried about.

I was accepted. This isn’t an experience that I take for granted in any way, as it’s something I often do not have access to outside of my home. I was accepted and seen as the person I am inside, the person of who Disability is an integral and morally neutral part of, and the person who has many other parts.

The person who forgot who she was for a hot minute there, but who felt more like herself in the presence of her family than she has in what feels like…ever.

The person whose stand-out feature, for once, was not a medical device. Because as much as I love them and am grateful for them, I’m not just a tube-fed, self-injecting, wheelchair-using, professional patient. I am Aunty Cyrene, and I am a daughter, a sister, a cousin, a niece, a friend. I am a role model to the most beautiful, kind, incredible children, just as I am. And I get to learn from them, too.

I was loved. I had all this evidence around me, coming from all directions, for the whole time I was there.

Evidence of the helping hands that have been waiting for the opportunity to be used.

Evidence of the love that comes not in words, but in silent, subtle actions, things you have to intentionally look straight at, and think about, to see the fullness of.

Evidence of the belief and gratitude and grace my favourite people extend me, the deep happiness they showed just for seeing me, and the truthfulness in the many renditions of “I am so happy you are here”.

I almost didn’t share this piece because the aftermath of this day on my body has been devastating, and, while I thought the scale-back would make more days like this possible, I’m having to reassess my expectations which is bringing on a whole new grieving process. But this doesn’t erase the memory, nor the learning it gave me, and I’m trying my best to allow all of the joyful and the difficult feelings to live alongside each other.

I am struggling, I really am. I am struggling to make the pieces fit, I am struggling to carry what I have to carry, I am struggling with the reality of my situation, what it means for me and my family now and for the future. I am struggling with it all.

But this day, this family, this feeling I felt while I was there and still feel in some way when I properly think back to that day makes me glad to still be here, to still have the opportunity to experience things like this…opportunities friends and family of mine and many others would give anything to have just one more time. I just wish it wasn’t such a rare experience.

It makes me proud to be part of such a loving, accepting, fun, protective, life-giving, caring, beautiful family, and proud of who I am because of them.

A family that was able to remind me that alongside the illness, harm, and trauma I endure, there are little gestures — the proof of love, the proof of acceptance and care, and that they are there, waiting to help, even though I can’t see them most of the time.

They may not actually be able to put my broken pieces back together, fix what I’m going through, protect me from the harm…but they can and do love me, that much is clear, and sometimes it just makes things feel a little less hopeless.

And what do I want you to take away from this? Um…if in doubt…wear a mermaid tail?

In all seriousness, look for the evidence of love around you. It’s likely everywhere.

And sometimes, potentially embarrassing things make the best memories.

Lots of love,

Cyrene💘