Trust and Transitions

I’ve just woken up feeling like I’ve stopped breathing again. Where I have to take really deep, long breaths so I don’t hyperventilate. Yes my friends, this is grief. I don’t get these dreams very often. But when they hit, they can knock me down for days and I’m literally lying on the floor, a shaky mess. The sort of dreams when for a moment I think he’s alive again. But I tell myself not to trust it, even while I’m still asleep. The sort of dreams where I feel like a fraud. Like I thought it was safe to be happy again, but I’m reliving that indescribable pain again. When I get a quick, sharp, blow that leaves me winded and gasping for air. That makes me feel stupid to ever think it would all be okay again. And that is fear. Fear that I’m not really going to be okay. That it was all an act, because if I feel this bad, then it hasn’t fully gone away… And this is what I’m always told, that it never goes away.

It’s so true and ridiculous at the same time. Part of you thinks how can it not go away? Am I not meant to function again? Am I always supposed to have this hanging over my head whilst just pretending to be normal? When does this fake it til you make it thing transition into actually making it? And this is the old perfectionist side of me wanting to wrap it all up in a neat little bow and put the box aside. And then move onto the brand new box. And then I forget these are made of ice. So I can try to keep them separate all I like, but eventually they all melt together. The difference is I don’t fear it anymore. Before it was a reminder that the pain never goes away, that it will always be there, so what’s the point. May as well give up and call it a day. If you can feel so good and have it crashing down all over again, it must invalidate all those other experiences.  Or does it?

I don’t know when it happened, but over time I’ve become an optimist. If the pain is always gonna be there, you may as well try to live with it. I’ve tried to fight it, it doesn’t work. There’s many self-help quotes that put it a lot more eloquently than I just did. But my brain is mush and my chest is so tight and sore. I’m in my messy, tired as state where I can’t really string my words together but this is why I want to capture it now. When it’s real. Not when I feel better and I can go on about how great my life is now, like I’m fully healed and it’s all hugs and bunnies again. That’s what people want to hear.

I dunno. Maybe it’s just me, but I’ve felt like a lot of people just want to know you’re okay so they can relax. They don’t really know what to say or do, so they hang back. Meanwhile, you’re going through the biggest struggle of your life and wondering why it feels like everyone has abandoned you. Enter the last two years of my life.


I took it really personally at first. Sure people are around for you at the funeral and for a bit after, but soon they return to their normal lives. And your whole world has still been shaken upside down. And when you feel so horrific, it feels like it’s personal. Like they’re all ignoring you. But in reality you’re probably wondering why they are still going when everything has stopped for you. it And this is where the isolation bubble comes in. Because you don’t know how to join the human race again. And most likely don’t want to. Yet it’s horrible in the bubble. The bubble is a shit fight. So many nasty, painful emotions swirling around. And you can’t breathe. You can’t get out. So you seek others eventually until you realise you don’t know how to be around them anymore. Because just like they can’t comprehend what you’re going through, you can’t make sense of things they talk about anymore. It feels like they’re all aliens. But you start to feel like you’re the alien. So you get back in the bubble to safety. It smells and is awful in there, but at least it’s safe. At least it’s still in there. You don’t feel like you have to be anything or do anything. It’s the control group. Because at least you know what you’re dealing with in there. No one told you you would feel like a zombie. No one told you you wouldn’t be able to handle anything besides what is directly in front of you. Suddenly there’s no room for more than one thought at a time.

And I apologise for all the terrible analogies. But it really is such a difficult thing to explain. And before anyone goes getting offended, I’m not saying people weren’t there for me. Some were. And I appreciate those that were… But in reality, I didn’t have many people left in my life. This is where the carer side comes in. Because on top of grief, it’s learning how to function in ‘normal’ society.


I remember for a really long time I felt like I had just gotten out of prison. Because I had to start adjusting to my surroundings again. I had been so detached from the world for so long, because my world had been so small. It basically only existed of me and Mike and MND. There was no time for social interactions. At first it was because I was either working or looking after him. (WAs I completely mad to work with children amongst all that?  At parties nonetheless?  And teach??)  When I wasn’t, I was really frazzled or sick and rundown. I used to get major anxiety over things like finding a stupid parking spot. The last thing I’d want to do is leave the house. And then when he moved to a home I would feel guilty if I went out. Which was probably a total of three times a year. And I’m talking going to a park down the road to meet a friend. And then I would feel horrible like I was being really insensitive and deserting him when he was literally dying, just incredibly slowly. Or that something might happen while I was gone.  But you need that break in order to function. The rest is what helps you to operate in peak condition. So that you have the strength to be mentally capable to deal with everything. To pick up the slack. To step in when they need you. But what do you do when they need you all the time? How do you say no to the most important person in your life when you don’t actually want to but your body is telling you you need to? In my case, it was to ignore that voice entirely. Squash it down, kick into survival mode and never switch gears. Until it all comes crashing down.

Anyway, I took us off on a bit of a tangent there. I’m not even sure how to get back myself… But essentially, it was freaking hard to make the transition to regular life again. I found myself not even wanting to. Because what I had gone through had forever changed me. I didn’t want to talk about the same things or go to the same places. It all felt so meaningless. And for so long I’ve been trying to find things that make an impact on my soul in the same way. Find something that makes me feel like I am connected again. For the past two years I’ve put myself in situations I wouldn’t normally and done things I never would have had the courage to do. And I’ve felt at a loss when I still come up empty. When I have amazing experiences and still feel so sad. I would get defeated. Give up and basically fall into a temporary depression. Because it felt like it would keep following me no matter what. The grief, the fear, the pain… It was all there. But that’s the thing… I’ve been so scared of my own shadow all my life. Never trusting things could work out or I could be happy. And that was something I grew up thinking, not because of MND. To suddenly go so far out of my comfort zone and have it feel shit… That’s not failure, that’s life. It’s messy. It’s unpredictable. It’s challenging everything I’ve believed for my entire life and saying no. I don’t believe you anymore. It is actually possible to be whole again. I just chose a really weird time to become an optimist.

And I don’t claim to be special. I know millions of other people have life-altering experiences which forever change them. For the better. That put them on their spiritual path. That perhaps wakes them up from a deep, alternate-reality inducing slumber. I’m still just one person. And it still feels uncomfortable to write this blog. I always feel like I’m harping on about everything in an attention-seeking way, fearing that people will think I want sympathy or recognition. Or that I’m going on about my experience with MND like it’s something new and unique, when so many other people have felt what I felt. Or I’m stuck and not wanting to move on, just relaying the past when I should just get over it. (Yes, I’m still kinda harsh). But that’s not what this is about for me. I’m prepared to go with the awkwardness and say what needs to be said if it will help someone find some solace. To feel connected when they might be feeling isolated and alone. When perhaps they don’t have time or the will to leave the house. To be reminded that human suffering is indeed universal. That we are in fact not alone. Especially in today’s world. So I’ll probably still cringe every time I hit post and secretly hope no one reads my raw emotions spewed out into the cyber realm… But I’ll also hope it touches at least one soul that needs it too.

And so yep, I woke up feeling panicked, and breathless and in physical pain. But no, I’m not lying on the floor screaming (which would be perfectly okay too!)  I still have snippets of that same intense pain that would leave me with extreme nausea, skulling back the ginger teas (it really works!) but nowadays I can get back up quicker. I can move through the pain. So to anyone that feels like they can’t get through it, no matter what kind of suffering it is… eventually you get better at it. If you’re going through the shit tunnel, you wanna keep going. The stench is less likely to cling to you that way :P Again, there’s a beautiful quote online with a pretty picture. I’m not even making fun of them, I lap them up these days. But that’s the glossy version. I’m more about the real. The messy. The truth.


I’ve been meaning to update my art on here, but for now here is one of my pieces I did not long after Mike passed. Which I think describes how I felt when I woke up this morning way more than my 4am tired, discombobulating words…



I originally tried to draw from anatomy books, but could’t get the angles I wanted or have the skills to do it from my head so I went and sourced a real skeleton and did a photo shoot with the lovely ‘Esmay’.  I start with whatever raw emotion I’m feeling and translate it to watercolours, then ink in the skeleton when it’s dry.



Actually, there’s some of this going on too…  My body’s pretty good at telling me what’s happening if I don’t ignore it.  Otherwise it screams at me :P  I think it probably illustrates the isolation bubble thing I was trying to get at.  There’s a stillness in the mediocrity.


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