Wednesday 27th July, 2016
Many of my posts recently have involved how I was coping with the emotional and practical side of things while Marc was in hospital. And though that side of things is important when contemplating coping with a close family member being ill, the central focus should always be the person who is sick.
So back to Marc. As I have said previously, his condition after the initial trauma remained critical, but once the two emergency bowel operations were over and done with, it was definitely a case of wait and see. He wasn't better, but he wasn't as ill, and as the antibiotics for the Group A Streptococcus began to work, his body slowly began to recover from the Sepsis. And I do mean slowly. Day to day it seemed as though nothing was happening: Marc lay there in the bed next to the nurses' station, tended to by a single nurse now, but one who was incredibly attentive and rarely left his side, an alarming amount of drips and machines surrounding his bed. He remained in the medically induced coma for several days, perhaps up to a fortnight, after the initial crisis, and there was little for myself, Linda and Matt to do but sit and wait.
We reacted to the waiting in different ways. Whenever Matt visited, he took to talking very quietly in Marc's ear. I have no idea what he said. I have never asked him. Marc doesn't remember either, except to know that his brother was constantly encouraging him with positive thoughts whispered in his ear, letting him know that we were there for him and that he needed to take his time, but to hold on, to heal. He called them his 'Maff-vibes'. Maff is an affectionate nickname which he is alternately known by to close family and friends. When Daniel was very young, he used to call him 'Uncle Maff'. The name implies a closeness and I think reflects the value of those positive thoughts he was constantly projecting into Marc's consciousness whenever he was there.
I know I massively appreciated his presence. Linda did too. He always seemed so calm, so resolute, so determined that Marc was going to be ok, given time and patience. He was a rock to me during some very bleak hours, and whenever he had to return to Brighton for work I felt devastated. His boss had been understanding of what was happening, and agreed that he could work a full day Tuesday to Thursday each week and return to the North for a four day weekend to visit Marc and support the rest of us. This meant he was regularly undertaking the five hour drive from Brighton to Warrington, as well as coping with the stress and worry of Marc's illness. I'm not sure how he did it. I will never forget the strength and peace he brought with him when he came, and looked forward to him being with us, as having Matt around took just a little bit of the strain away from me.
Bringing him back to us
The two women in Marc's life, both book lovers, began to read to him. The funny thing is, he's not that much of a reader himself, but I think it made us feel like we were doing something which might just be a little bit useful. Linda took a Douglas Adams Sci-fi book at first, and read it throughout her visiting sessions while Marc was in the coma. It gave her something to do, and even though the coma was medically induced and we knew it wasn't something permanent, reading felt like it might bring Marc back to us, make him aware that we were all still here and cared about him. I suppose it allowed us to connect with him at a time when we both felt very separate and distanced from him.
Later on when he was conscious, but still couldn’t talk to us, Linda used to read him bits from the newspaper, keeping him entertained and informed of local and national events. It was difficult for us to find different things to read: we couldn't really read him the same book because we would never be sure where the other one was up to. I also think our different relationships with him almost required a different reading matter, if that makes any sense. Perhaps we were taking a different tack in our efforts to help him recover: for Linda, the current affairs of the day, to keep him centred in a world he could not currently participate in. She reads the newspaper regularly, so it was a natural choice for her.
For me, it was escapism all the way. I'm ashamed to say I don't read a newspaper and am far more likely to be found reading something fictional than any kind of factual, real life events. My dad despaired of me all throughout my adolescence, as he tried in vain to get me to read a paper or watch the news. Even as an adult, I would far prefer to leap into a fictional world than engage in whatever depressing current affairs fill the news. I know this is a terribly irresponsible attitude, but I'm afraid it's just me. Anyway, in an effort to make myself feel like I might be helping Marc emotionally (as I was no help to him at all physically) I also wanted to try reading something to Marc. I’m an English teacher after all, and love to read aloud to people. Marc is not really a big fan of fiction though, and I had no idea what, if anything, he would be able to take in, so I eventually settled on a Charlie Brooker book called ‘I Can Make You Hate’.
I chose this because I knew Marc was a fan of Brooker, and found him funny. I wanted to read something comic, but also something which could be read and understood in small chunks. The Brooker book was just that – short anecdotes written about various televised political or social events with an acerbic commentary by Brooker. It was funny, and sometimes had me laughing out loud in the ward, but it was also extremely rude in parts, and full of swear words. I found myself having to hush my voice or stop reading certain sections due to the language or content, becoming very embarrassed when the nurses were around. I’m sure they had heard far worse, and wouldn’t have been particularly bothered about the content, but I felt extremely self conscious, and often paused in my reading until the nurse or doctor had passed me by. It seems ridiculous to remember it now, my embarrassment, but looking back, this is perhaps one of the more affectionate memories I have of Marc's time in ITU.
As he became more conscious, I knew the reading was helping him, because he was more able to respond to me. I'm jumping ahead quite a bit here, because there is more to tell you about Marc's level of consciousness increasing later, but for now understand that, over time, he became able to communicate with us in the simplest of ways. I would ask if he wanted me to read to him and he was able to use his hands or occasionally move his head in a slight nod of assent if he wanted to be read to. The chunks of text which made up the different anecdotes were usually between two and four pages of the book, so I would read one, then ask if he wanted to listen to another. He became quite adept at holding up two or three fingers to indicate how many more sections of the book he wanted to listen to, and I was well used to checking with him how much more he could cope with.
Because at that point he could only cope with so much. Mentally, he was clearly going through a lot: the chaotic dreams; the vague awareness of his condition, but no real understanding of what had happened to him; the frustration of being unable to move, speak or even breathe without the assistance of machines; it must all have been quite mind blowing. I cannot even begin to imagine what it was like waking up in an alien place with no real way of asking questions about what on earth was going on. So in terms of understanding the stories in the Brooker book, it really was a case of what he could manage, depending on how tired he was and how much of his energy that day was taken up by him struggling to heal.
The other thing we tried once he was more conscious was music. Anyone who knows Marc understands what music means to him. Music is to Marc what books are to me. He listens to a wide range of styles and has been a successful house music DJ in his time. So music, I thought, would be something he would find comforting, familiar, helpful. I enlisted the help of his best friend Mark here: the two of them were DJs together for years and he has far more of an idea of the types of tunes Marc likes to listen to. He was a complete star, again I think glad of something he could do which would be helpful.
The day after I asked him, he came to the hospital with his iPod loaded up with tunes that Marc loved. We put some headphones on Marc and pressed play. I think the first tune on the iPod was something from 'A Tribe Called Quest', though don’t ask me what. I’m not sure what we expected to happen. I think perhaps we were waiting for the old Marc to leap up from the bed, invigorated by the familiar music, and be magically well again. I’m sure reading this you think that sounds ridiculous. It is, of course. In fact Marc dutifully lay and listened to the music for a couple of hours (he didn't really have much choice in the matter), but when he was asked if he wanted to listen to more later, he indicated that he didn’t want to.
Cut off from the world
The iPod lay unused for a week or so before Mark took it away. I couldn’t believe that he didn’t want to listen to music, because I can’t stress enough how much music means to him. But he simply couldn’t cope with it. Maybe it was the additional wires from the headphones, which must have felt just like one more tube amongst the many which were connected to Marc’s body to keep him alive. Perhaps he felt so removed from the world that blocking off his hearing meant he was even further cut off. I don’t know. I only know that he rejected the music, the same way he rejected the iPad later on when he would have been able to hold it. His recovery was so demanding, so all-consuming, that he simply could not deal with any extra stimulus that taxed his brain.
So I continued to read to him. I eventually stopped once he could talk to me again. That was over a month later. After that, the Brooker book lay unfinished for a long time. I'm not sure we could cope with the hospital associations it brought, but in the last year I know that has Marc picked it up, worked out where we were up to and finished the whole thing. I think he felt he had to, it was a kind of personal goal.
As for me, I'm not sure I will ever read any of it again.