Having a one sided conversation is very draining. When you do all the talking, and you don’t get a response. This is how it’s been for the past three months, talking to my husband. I can tell him all the things I want to, but he can’t join the conversation. He would move his eyeballs a bit in acknowledgement or move his body around. But that was as good as it was going to get. I’ve been keeping up this for so long, it feels like some kind of new normal. But it isn’t normal at all. It’s a strange new land I am navigating and I’m finding that perhaps, in some profound way, it isn’t so one sided after all.
Last Sunday afternoon I was talking to him quite intently saying “I just wish there was some way you could talk back to me and tell me what is bothering you.” He was repeatedly twitching his head from side to side.
I chatted to the nurses about it and one of them said it means he wants to get rid of the fluid in his mouth. Which, normally, I would agree with. Often when I get there I kind of “wake him up”, if that makes sense, and he immediately twitches to one side to relieve himself of the saliva build up (he is unable to swallow). So I know what that looks like, but this was different. It looked like something was bothering him. He kept moving his head in a very subtle way from side to side.
I recived the answer in the middle of the night. At 2am to be precise. I felt this intense noise in my brain. Almost like a drum. And together with this, distorted sound of some kind of background talking. It was horrible. How could you live with that noise? How could you fathom all the sounds?
I did not sleep much after that.
Earlier on when this all happened I received a letter via Facebook from one of Brett’s old school friend whose wife passed away in not totally dissimilar circumstances.
It’s not the same medical cause, but the consequences are pretty similar . Lack of blood supply to the brain. Michelle suffered an out of hospital cardiac arrest, while at work. It was sudden and completely unexpected. Up to that point, she was A-symptomatic regards her eventual diagnosis of Wolff-Parkinson White. Unfortunately she had a malignant accessory pathway. A week later, the neurological consequences of her cardiac arrest were insurmountable and she passed away. It’s a tragic event but I’ve learnt that God gives us a spiritual connection with our loved ones, for a reason. Just like he gives us the Holy Spirit.
He said something else which has really stuck with me:
You have the closest spiritual connection with Brett. Between the good Lord & him, they will guide you. I can only imagine it’s emotionally excruciating for you. To the point you may doubt you have the ability to feel the spiritual connection. Please trust me that you do. You have it stronger and more pure than anyone else.
So he knows this. And I know this. But the scientific community isn’t convinced, I am sure. Although I know they are sympathetic.
Last time this sort of thing happened, I was very distressed (when he told me to turn off the machines). I went and spoke to those nurses and I think they must have thought I was a few plums short of a fruit cake when I asked, had anything happened at 2am?
So this time I was wiser, and I merely said: “Can I ask you a peculiar question? Did something happen at 2am last night? I had this feeling of a noise in his head. Do you know who was on duty? I have these weird experiences sometimes.” Roll eyes. Look casual.
The nurse, who by now has gotten used to seeing me around, was more sympathetic and identified the relevant nurse. But she agreed nothing had been reported. As before.
By this time the lack of sleep and general wear and tear on my body with all the back and forth to hospital had caught up with me. I picked up Nicky from his play date and headed straight to bed, where I was to remain for the next two days.
And it was while I was lying there, clutching my stomach and hearing the builders bash and crash outside (as we are working on the gutters and drain pipes) that a thought occurred to me about what to do about this noise in his head.
Sedation. Block it out completely.
I chatted to my mom about it and her point was, well, if they want to see if he will wake up, how is that going to help?
I thought about a few days ago when I saw his bottom eyelids twitching. I’m so sure if he could open his eyes he would. But he can’t.
So I thought… what about just the night? So he could get some respite from it? She thought this was a good idea.
However another day later, when I was feeling a bit better enough to go to work, I had a change of heart. It could have been a rather pleasant dream I had about Brett. Where he was his normal, joking, happy self.
So I decided to rather take a look at him first to see if he was still twitching.
I got back to ICU after a two day absence and he was very cold and still. I could hardly get an eye movement out of him. So I gave him a big hug and it was as if he used all his strength to move his shoulders. Which is his way of hugging back. He was very sleepy but there was no more twitching. Not really. I read him a funny book. Not sure if I was just reading for myself. But I just wanted to be there.
As I saw him lying peacefully there I realised: maybe he is creating his own sedation. The locked in syndrome (undiagnosed, but I believe he has it) can work the other way, you know. It may lock him out of responding but it also can be a protection from the horrors of his condition.
Thank you for sharing your journey… we keep you and your family in our prayers and keep praying for strength for you xx