So I’ve decided to start up my blog again. I haven’t posted anything in over two years. The initial idea behind creating this space was to bring to the light the proverbial skeletons in our closets… The horrible things we wish weren’t there, but exist nonetheless. The ones that no one wants to talk about. In the case of my husband and I, it was Motor Neurone Disease. And thus, Skeletons In The Light was born, to document our journey and hopefully raise some awareness of what it was like living with MND.
I’m not going to get into all of it again, so if any newbies want to catch themselves up, do so here. Full disclaimer, it’s a pretty long read and I’ve been told it’s a bit of a tear jerker. Also if you want to actually know what MND is without having to type in all those bothersome letters, feel free to click here.
My last post was just after Mike’s 29th birthday. Things got pretty intense straight after that. It felt like he held off til then, then went downhill fast. Neither of us could do much besides try to keep our heads above water, let alone keep up with this blog. It was essentially a flurry of documents… Wills, advanced health directives, funeral plans and whatnot. Way to spend our last moments together.
Anyway, I assume you’ve gathered that Mike has since passed. He died right after Christmas. It’s coming up to two years now. I remember the week leading up to his death, I would wake up at 5am every morning and go to the beach. It’s like my body knew something was up and was trying its best to prepare me for what would be one of the most intense things I would ever go through.
I got the call from the nursing home at about 5am too. It was the only time I had taken my phone off silent before I went to bed. I had two more horrific days with him. At that stage he couldn’t speak. He could barely move. All he could do was look at me and maybe turn his head, but even that was a struggle as the hours passed.
I remember when he said goodbye though. I doubt it could have happened any more perfectly. I was sleeping on the floor beside his bed, on edge and waking up at every noise I heard… Wondering when his last breath would be. I could barely breathe myself. At about 4am, he suddenly jerked up from his resting position, looked directly over to me, and forcefully motioned at me with his arm. And then his body relaxed.
It would have taken him an incredible amount of strength to do that. He had gotten so weak. That was the last time he had moved his arms, or his body at all really. After that he could basically only stare at us and blink. It was torture seeing him like that. But I felt like it wasn’t about me. All I wanted to do was put on a brave face so he wouldn’t be scared. I remember telling him it was okay to leave so he could go peacefully… I didn’t want him to worry about anything before he died. I doubt I was very convincing though. I was saying the words but in my head I was screaming for him to stay with me, just a little longer…
The palliative care guy came in that morning. He told me that Mike would probably be dead by lunchtime. Or maybe in the next few hours. He had a strange mix of being extremely blunt and incredibly compassionate. And it was what I needed to hear. No sugar coating. Just the hard facts so I knew what we were up against. And so after falling apart temporarily, I was able to keep my head clear enough to make those end of life decisions. How, to this day I still have no idea… But I’ll always have a lot of respect for what palliative care teams do.
It didn’t happen until later that night though. Those last few hours… I don’t even know how to describe them. Each breath he took was getting further and further apart. He would stop breathing and then we would stop breathing. To this day I still have chest problems and have difficulty breathing from hanging on so tight for so long. I wasn’t even sure if I wanted to see his last breath. I felt like as his wife, how could I miss out on such a thing. It was meant to be til death do us part. I had been so invested in every step of his illness, it felt like a cop out to turn away at the last minute. But Mike being Mike, thought of the perfect compromise…
I did miss his last breath. In fact, I was completely oblivious to the moment he died. I remember his dad saying goodbye and his mum letting out a sob. I didn’t know what was going on. Because the moment it happened, he was in my arms. I didn’t see it because I was busy hugging him, telling him it was okay for him to leave as he took his last breath.
So much has happened since that moment. So much so that I will leave it for my next post… And while I’ll continue to catch you up on the past two years, I now stand at the precipice of my next chapter. Yes, there’s a lot of pain and darkness I’ve had to endure over the months, but with that has come an incredible amount of growth. Beyond the depths of my imagination. And as they say, it’s through the cracks that the light gets in. So this is me, Claire Ross, finding my light.