Literary Therapy

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.

Positive thoughts

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.

Escapism

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.

Developing communication

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.

Music therapy

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.

It’s all about the Money

If thinking about contacting friends to let them know about Marc’s illness was difficult, starting to consider the financial side of things was even more of a challenge. The last thing I wanted to do was look at bank balances or insurance policies. But I quickly realised that facing this kind of thing was important.

I began by speaking to Marc’s boss again. Richard was lovely, considering I had never met him, and expressed nothing but concern for Marc and I, telling me not to worry about work at all. He did put me in contact with a woman from the HR department at the BBC, and she and I began to email one another and have some conversations over the phone about where Marc stood in terms of work.

Finding out what the future held in terms of Marc being seriously ill and potentially, though I don’t like typing it, dying, was imperative. We did have wills, but they had been written years before our marriage and the birth of our children, when we had first bought a house together, and simply stated that if either of us died, all our possessions would go to the other person.

Unexpected catastrophe

I knew that Marc had life insurance that would at the very least pay off the mortgage, and some kind of additional sum, but I had no idea how much that would be. I also knew that the BBC would pay out an amount in the event of Marc’s death, but again, I was pretty hazy on the exact figures. You don’t imagine, at the age of thirty seven, after only eight years of marriage, that you will have to face this kind of catastrophe.

The call to HR told me that Marc was entitled to three months of sick pay, because he had been working at the BBC for less than two years. This was a concern, because even though he had only been ill for a matter of days, his condition was so severe that even if he did fully recover, it wouldn’t happen quickly. The HR manager was extremely supportive however, and told me just to keep in touch in terms of Marc’s condition, and we would reassess the situation later on.

She also referred me to a company which the BBC worked with who would possibly be able to help me with more of the financial and practical things as Marc’s hospital stay continued. All I had to do was get regular doctor’s notes from the hospital to cover the official requirements Marc’s illness triggered with his place of work. This was not too large a chore, and the ITU nurses (as usual) were so helpful in tracking down the extremely busy ITU doctors to sign the appropriate form for me.

Insurance policies

The previous year, our current mortgage term had ended and we had remortgaged the house with the advice of Danny, a friend of mine’s father. He had also helped us to organise the relevant insurance policies to cover the mortgage, and advised us on other policies we might have in place. Prior to this, Marc and I had never had any Critical Illness cover, believing it to be irrelevant and unnecessary while we were young and fairly fit. (How wrong we were!) However, we had decided to take out some Critical Illness cover to give us more security now we had two children to consider as well as ourselves. Danny got in touch as soon as he heard about Marc’s illness, and immediately offered his help in sorting out any financial form filling or contacting insurance companies regarding any payouts.

He reassured me that, should it be necessary, he would take care of contacting the insurance company for me. He also, extremely helpfully, knew the exact terms and conditions of the policy, and said that we were entitled to a small amount of hospital cover. This meant that for every day that Marc was in hospital, we were able to access an amount of money to cover costs like travel to and from the hospital for visiting, car parking fees (I ended up with a kind of ‘frequent flyer’ pass for Warrington Hospital car park I was there so often), childcare costs and all the small amounts which are associated with having someone close to you in the hospital for a prolonged period of time. Arranging the amount relied on more forms being filled in, but Danny accessed and printed them for me, as well as helping me to fill them in correctly. All I then had to do was ask a doctor at the hospital to fill in a section for me.

Feeling guilty

This form was larger than a simple signature on a sick note, and I felt awkward asking for anyone to take time out of their busy routine to complete it. In the end I asked Laura, the female doctor who had been one of the first to deal with me, and fed back to me after Marc’s initial operation. She was very approachable, young and friendly, and despite me feeling guilty for making such demands on her time when she had so many sick people to care for, was happy to help me in any way she could.

I gave her the forms when I saw her close to the start of a visit, and she brought them back to me before I left. I suspect she filled them in during her break. She seemed keen and happy to help me in any way she could, and I think it was because she felt relatively helpless in the traumatic situation I found myself in. Once Marc’s life had been saved, his recovery was slow and arduous, and nothing could be done to speed it up. Again, I found that Laura, like so many others in the hospital, wanted to do nothing more than help me out in any way possible during such a difficult time.

I didn’t let myself think ahead too much. My good friend Clare recently told me how scared she was for me during those first few days, believing that Marc would die. How she couldn’t concentrate at work for worrying about what would happen to me. How her boss let her take some time off and she spent it scouring the internet for advice on what to do to help. She even went as far as to call the Citizen’s Advice Bureau to ask what rights and benefits I would be entitled to if I suddenly became a widow. I cannot express how moved I was when I realised she had done that for me.

Ongoing health problems

Thankfully she didn’t have to support me through Marc’s death. But there were other worries though, ones I didn’t even want to contemplate in the midst of all the chaos. Ones which, looking back, might have paralysed me with fear. The possibility that Marc would survive, but have massive ongoing health problems. Have to have limbs amputated. Be constantly fed through a tube. Have ongoing mobility problems, the cost of which might well have been huge.

And while Marc does have ongoing issues, thankfully in the long run they have not been horrendous. We have coped. They could have been much worse. But what we have been through to get to this point has been extremely difficult. I’m glad when I look back that going into Marc’s recovery, I knew nothing of what we’d have to cope with. Because I’m not sure I’d have been able to cope, knowing. But, not knowing what was ahead, and taking one day at a time, I did cope.

Fully functional

Somehow I found the strength to get on with organising  things. The cooker had broken the week that Marc became ill, and where I would usually have left it to Marc to sort it out, I surprised myself by calling a local repairman we’d used before, and the cooker was fully functional again by the following day. I have a minor phobia about phone calls: I detest calling people I don’t know. I have been known to postpone calls to the bank, the estate agent, the insurance company, even a takeaway, and wait for Marc to do it, simply because I hate beginning a conversation on the telephone and often find I get completely tongue-tied.

It’s a ridiculous fear, I know. I’m quite a confident person generally. People who know me might well be surprised to discover that such a tiny, insignificant thing as a phone call makes me so nervous. But it’s the truth. At such a stressful time, however, when Marc’s life was at risk and things were truly terrifying, a simple call to a tradesman didn’t seem so daunting. And, let’s face it, I had no one else to do it for me. So I just got on with it. Sometimes I feel like the most traumatic situations can bring out the best in people. Somehow, you are just able to cope, because you have to.

No choice

So many people have told me since Marc’s illness how strong I am, how well I coped, how I am (I hesitate and cringe as I type this it makes me so uncomfortable) inspirational. I say this not to brag, because I don’t see myself like that at all. Because I truly feel like, if it happened to you, you too would find the strength from somewhere to cope. Because you wouldn’t have a choice.

Perhaps if I had not had the children, if Marc and I had been simply a couple with no one depending on us, I might have behaved differently. I might have fallen apart, sobbing into the sofa night after night. But that simply wasn’t an option. There were two children who needed me. Children who I didn’t want to frighten. Who I had sworn from the moment of their birth to protect. And protection, in this case, meant carrying on in as normal a manner as possible, so as not to terrify them. Which meant hiding how terrified I was.

I couldn’t allow myself to sink into a pit of depression. Ignore and neglect Daniel and Amy while I spent hours weeping at Marc’s bedside and shouting curses at the sky. So I got on with things, taking one day at a time. And I firmly believe that if you found yourself in a similar situation (and I sincerely hope you never do) you would too.

Passing on the Message

The more I write about the period of Marc’s illness, the more complex my thought patterns become. What started off as a simple chronological account of events has begun to sprawl in my mind. I find myself recalling little things which happened in the early days of Marc’s hospital stay that have been missed out of this blog, because I had forgotten about them until recently.

But that doesn’t mean that I should leave them out. Even though I have moved past them now in terms of my more recent posts, I still feel they warrant inclusion, as every detail of that time seems important to me. There are new details I remember each week which I marvel at, and want to incorporate them in this increasingly complicated tale which describes the most difficult period of my entire life.

Camping

For example, as Marc was first admitted to hospital on Tuesday 24th June, we were due to go camping with friends the following weekend. A large group of our friends, many of whom Marc has known since his university days, go on a weekend’s camping at Shell Island in Wales every year. We had never managed to join them before, the years leading up to this point had been busy with Daniel’s birthday celebrations as he was born in June, around about the date they always go. That year, we were determined to make it. We’d bought a family sized tent (previously we’d only had a small, two-man affair, not being huge fans of camping) and had even gone as far as to purchase some airbeds and junior sleeping bags for the children.

It seems ridiculous now, but even as Marc was in hospital on the Tuesday, I went out and bought a camping stove for our trip, fully believing that Marc would be well and home again within a matter of days. Now, I thought, I would only need a bottle of gas for the stove, and I was determined that when Marc came home I would have everything bought and packed up ready to go.

To this day, I have never bought gas for that stove.

Life-changing event

But with Marc’s situation becoming critical, it actually got to the Thursday before I realised that I needed to let them know that the Littlemore family would, yet again, not be coming on the trip. Informing people of such a life-changing event is complicated. Some of the people we know did not find out about Marc’s illness for weeks. A few didn’t actually realise anything was wrong until he was finally out of hospital three months later and we announced his homecoming on Facebook: the first positive announcement we’d felt able to make so publicly.

It’s funny, but over the course of a lifetime we meet so many different people, and over more than thirty years Marc and I had been lucky enough to build a wide circle of friends from different places: school, sixth form, university, work, hobbies… the list goes on. As the years pass, our relationships change, some remaining closer than others, and inevitably we would see some of our friends on a regular basis, while others we only saw from time to time. This meant it was totally possible for us not to hear from some people for a couple of months.

Overwhelming

In terms of a huge life event then, immediate family and friends know what is going on first, then work colleagues – a strange one, because you might know them far less than others, but you can’t hide an absence from work without explanation. After the essential people know what’s going on, it becomes more complicated. But by the second and third day of Marc’s illness I was beginning to realise that someone needed to let other friends, ones who perhaps we saw less regularly, know that Marc was in a such a critical situation. They cared about him and deserved to know what was going on. But facing the sheer number of people who I would need to contact was overwhelming.

Like I said earlier, at this point I was pretty much completely avoiding Facebook, and didn’t post anything on it the whole time Marc was in hospital. I’m not one for posting the minutiae of my life anyway, and my posts are largely positive, celebrating happy moments or perhaps commenting on or sharing articles I find interesting which are posted by others. I certainly wasn’t going to post on Facebook about the devastating events that were happening to my family. I don’t even know how I would have gone about composing such a post. I also didn’t want people I hardly knew to find out about the situation before potentially close family and friends were aware of it.

A phone tree

But I couldn’t face phone calls either. Between sorting out the children, visiting Marc and dealing with my own emotional state, the days were difficult enough. Phoning numerous friends with such upsetting news and dealing with their potential reactions was something I didn’t relish. So I delegated.

Not intentionally at first. In terms of the Shell Island weekend, I sent a text to Chris, one of Marc’s closest friends, on the Thursday. It was to the point and simply explained what had happened, and that we would not be coming on the trip. He responded with the utter shock and disbelief I was becoming accustomed to, and immediately asked what he could do.

Without thinking, and knowing the party going camping to be a large one, I asked if he would pass on the message about Marc’s condition to the rest of the group so I didn’t have to. He agreed, and so our ‘phone tree’ was born. In the weeks following Marc’s initial illness, I would send Chris regular texts, filling him in on what was happening. Throughout this time, he faithfully forwarded my messages to upwards of twenty people, saving me an awful lot of time and stress doing it myself.

The benefits of text messages

In most of my communication from this point onwards I resorted to text messages, which are so much easier to compose and also ‘copy and paste’ from, as my communication of choice. I would construct a general update every day, which contained the  medical facts of where Marc was up to, his treatments and how he was responding, the levels of support he still needed and so on. Then I would take this core message and, adding various comments at the beginning and end of the text depending on who it was intended for, send it out to whoever needed to receive it: my parents, close friends, whoever had messaged me that day to ask how he was.

If the text was meant for someone close, I might add some comments about my own state of mind that day, how I was coping, what I was thinking. A more distant acquaintance would simply get a pared down version of the facts. And those I had spoken to very recently received only the most up to date information, as they already knew most of the content. It sounds really callous now, thinking about sending almost a blanket text to people, but it was the only way I could cope at the time, and saved me so much time each evening, when the job of replying to messages had become almost hour-long.

A vital support network

Thankfully many others offered to take up the mantle of keeping everyone informed about Marc. My parents kept their respective sides of the family up to date with how Marc was, and Linda did the same with her family. One of my university friends did the same with that branch of people, and work colleagues did the same.

One of the most remarkable information systems was that of my drama group. I was in constant contact with Clare, one of my closest friends, but what I didn’t realise at the time was that every Tuesday, during the regular announcements at our regular musical rehearsal, Dan (Clare’s husband) was giving the entire company of Annie Get Your Gun an update on Marc’s condition. When I found this out it floored me. The fact that so many people cared so much about us that it was necessary to make a weekly announcement was so touching. But they did.

Eternally thankful

I am eternally thankful for those people who realised how difficult it was for me to keep in touch with everyone we knew and offered to be a branch in a phone tree letting everyone who cared about Marc know how he was. I’m also sorry that there were some who, when we announced on Facebook that Marc was finally home from hospital, contacted me in horror to say that they’d had no idea he had been ill, and why hadn’t I let them know, as they would have been there to support me. The simple answer was that I couldn’t have coped with contacting any more people than I already had to. That I didn’t doubt that they would have been there for me had I asked for help, but that for whatever reason I hadn’t contacted them, not letting them know was not a purposeful slight against them.

But as a huge network of friends, old and new, young and not-so-young, near and far, found out about what was happening to us, their reactions began to filter back to me in a variety of ways. I have already mentioned those who offered to give the children lifts to and from various clubs and take care of them while I was visiting the hospital. Others sent gifts of activity books and sweets for the children, perhaps realising that I would need as much help as possible entertaining them during Marc’s absence, my mind occupied with other things. I received texts and cards with offers of help with the grocery shopping, mowing the lawn, cleaning the house even. And a number of friends sent me prayer cards, telling me that we were in their thoughts and that they were constantly asking God to help us. I cannot express how much I appreciated all of this support. It got me through what was the darkest of times, and it meant so much to me that so many people cared.

Avoiding camping

Needless to say, we never made the camping trip. We have still never been to Shell Island, but I hope that one day we will. Recently though, it was Daniel’s ninth birthday and we used our tent for the first time, camping in the garden with the children overnight. It was fun, and made me think one day we will be able to manage family camping holidays.

And now Marc is better and it’s ok to joke about it, many of his friends like to remark on the lengths he is prepared to go to to avoid going camping with them. I’m always grateful that we can finally find humour in the situation.

Life Goes On…

As Marc’s second week in hospital stretched on, real life began to intrude. I considered work. As a teacher, I only had three weeks to go until the summer holidays. One evening, two of my colleagues (and friends), Catherine and Kate, came round to see me, extremely concerned. They brought cake, I think, homemade if I know Catherine, and both enveloped me in their arms as soon as they came through the door. Not a simple ‘nice to see you’ kind of hug. An intense hug which lasted several seconds and tried to convey their care and concern for me, their wonder at how I was holding it all together (sometimes I wasn’t), and their despair at having no real idea of how they could possibly help me through this.

The children were already in bed asleep and we settled on the sofa to talk. I remember how shocked they both were: the genuine horror they felt about my situation was evident every second they sat with me. Seeing work colleagues had brought my mind back to my absence from school. Prior to their visit, I think I had been considering work I could potentially set for my classes, or even the possibility of going into work the following week, at least during the mornings, and teaching, but leaving my classes after lunch to go and visit Marc. I know I was trying to figure out how I might manage work with Marc in hospital.

A huge relief

Catherine, who always tells it like it is, made an off the cuff remark soon after arriving, “So you’re not coming back ‘til September then.”

And that was that. She was right. No one expected me to be in work with Marc in his current situation. She wasn’t asking a question. It was a simple statement, which had been obvious to everyone else except me. How could I go in to work with Marc so very ill? It was a huge relief, both accepting that I wasn’t going to be able to work for a while, and admitting that, actually, that was ok.

With that decided, I spent some of the evening making a note of where every class was up to and what they needed to cover by the end of the year. Thankfully, my year 11 exam classes had all left, having completed the course and their exams, and the rest of my groups were mostly in ‘wind down’ mode for the summer holidays. Otherwise I’m not sure how I would have felt about leaving them all and I’m not sure what would have happened. I certainly wouldn’t have felt good about leaving them if it had happened before the exams.

A Godsend

I also have no idea what I would have done in any other kind of job. Teaching is a full-on, tough career which demands plenty of its employees. But it did mean I had 6 full weeks with no physical work required of me. No actual place where I needed to be each day. No classes needing supervision. No lessons needing to be planned. Few books needing marking. I may have been pencilled in to write a new scheme of work that summer, I can’t remember. I was certainly in no state to start creating a unit of work at that point. Perhaps some other lovely soul undertook the responsibility to do it for me – I honestly don’t know.

There were few things to be thankful for in my situation, but my job, and the six week hiatus I had from work, were Godsends I was hugely thankful for. I made the all-important phonecall to my head teacher the following day and she was hugely supportive, immediately confirming Catherine’s assessment that I was not expected back before the summer holidays, and that I wasn’t to worry about anything. It was called ‘Compassionate Leave’, and if anyone had ever qualified for it, I did. I hung up the phone feeling that at least I didn’t have to concern myself with work for the foreseeable future, which was a huge relief.

Support and sympathy

But back to my friends’ visit. During our conversation I found myself recounting what had happened to Marc in detail, from start to finish. I did this a lot during the first few weeks of Marc’s illness, in fact, I’ve been doing it ever since, whenever we meet anyone new who knows nothing about it. I actually found it quite a release to tell the whole story. Perhaps it was getting the events in order in my own head. Being able to rationalise what had happened properly. Or simply the support and sympathy provided by Catherine and Kate, who listened, incredulous, and confirmed that it was completely ok for me to be falling apart a little bit under the circumstances. I don’t remember crying though. At least, not in front of them. We shared several cups of tea and they just listened to me talk.

Many friends did this for me. I think it was the best support anyone could provide for me at the time. Around 8.30pm, once the children were asleep, someone would arrive at my door simply to sit with me and talk; share what was going on; allow me to air my anger and fear and frustration; occasionally watch a mindless dvd which required little concentration. It was exactly what I needed to fill the emptiness I felt once visiting was finished for the day and the children were in bed, and I had nothing else to fill my mind but fear. Once they left, I would go upstairs and check on the children, call ITU for the usual ‘He’s just the same as he was when you left him,’ conversation, and then go to bed. I did actually manage to sleep usually, which was another Godsend. I know of a lot of people in similar situations who can’t sleep, and this must make things seem a whole lot worse.

Many friends brought gifts, generally of food. To begin with I found myself unable to eat it. I remember cutting up slices of cake brought by one friend as a gesture of support and comfort. My own slice was still sitting on my plate, a single bite taken out of it, when she left. She didn’t bring any the next time she came, realising that I couldn’t cope with eating more than what would sustain me at that point in time. She knew instinctively that what I needed was company (and copious amounts of tea). I massively appreciated these friends, who worked out what I needed the most and provided it without expecting anything in return. I hope I can repay them someday.

A one-sided conversation

Although I was in a constant state of fear and worry, visiting Marc at the hospital became routine, and because I was in ITU for hours at a time, sometimes twice a day, I found myself with nothing to do. Hospital visiting is dull. You have nothing to talk about, you can’t go anywhere. The patient has done nothing other than have various medical procedures and, in my case, couldn’t even reply to my questions, so the conversation was massively one-sided. Also I had absolutely nothing going on in my life. Everything had stopped, barring hospital visiting and keeping the children going. So I had no other topics of discussion other than the kids’ activities and Marc’s current medical condition. And they soon ran out.

I began to build in little tasks to pass the time. I’ve already mentioned crossword puzzles, though once Marc began to be more awake during my visits it seemed rude to ignore him in favour of a puzzle book, so I didn’t do much more of that. I spent two entire days during visiting filling in my Hound of the Baskervilles director’s script with all the notes on my intentions for the play, ready to pass over to my successor. Life was going on as normal for other people and Clare had been busy finding a replacement so the play could go ahead.

Relief and Guilt

A director from another company had kindly agreed to step into the role in my absence. This should have been heart breaking, passing over all my plans for the play, the cast and the way I wanted it to take shape on the stage. In truth with everything that was going on, the play was the least of my worries and I was glad of the distraction during those two sessions, when Marc was still in the coma, which kept my mind from dwelling on morbid thoughts. As with work, I felt extremely relieved once I gave up the additional burden of responsibility and was more free to focus on Marc and the children.

I did feel very guilty though, and I spent time writing a letter to my cast. There were ten roles in the Hound of the Baskervilles play, and I had cast ten actors in the different parts only three weeks earlier. We were half way through setting Act One Scene Three when Marc became ill, and I felt very much like I was abandoning them. I knew in reality that they all understood, but still I felt the need to explain to them in my own words the reason behind my sudden absence. The letter was another task which took up some time during a lengthy visiting session where Marc was completely out of it.

Another thing which often occupied me for at least twenty minutes during visits was my constant interrogation of whichever poor nurse was on duty that day. I would ask question after question until I was satisfied that I had been given a full update and had all the information that was possibly available to me. This could take a while, between the nurse doing Marc’s regular checks and carrying out the different medical procedures he required throughout the day, and definitely made me feel better.

Helplessness

I think my overwhelming feeling, aside from fear that Marc could potentially die at any given moment, was that of helplessness. I had no idea what I could do to help my husband; in fact there was actually nothing I could potentially do at this point. And I hated it. There is truly nothing worse than knowing someone you care about is in trouble and there is nothing you can do to help or assist them. I firmly believe that, by finding out as much as I possibly could about his situation, I felt more involved with his recovery, like I could somehow be of some help to him. In reality, I was no help at all and possibly even got in the way at times.

There was nothing much more for me to do during visits, except stare at the constantly fluctuating numbers on the monitors above his bed. Blood Pressure. Heart Rate. The levels of support being given to Marc by the ventilator. I became a bit of an armchair expert about expected levels of blood pressure and what an acceptably ‘normal’ heart rate was for Marc. I spent entire visits in the early days familiarising myself with what the levels should look like, and then watched them eagle-eyed for any changes, haranguing a nurse about potential reasons why they might to be lower or higher than normal for Marc on any given day.

Neverending red alert

I do not have the words to express my constant state of fear in those early days. Having seen him almost die, I was on a never-ending red alert, convinced if the monitors showed a faster heart rate or lower blood pressure than normal that I had to let someone know immediately, or he might die that very instant. Anyone who has ever experienced a close relative being in a dangerous situation will understand what I’m talking about. Trauma makes you scared of what could happen, and at times it is difficult to return to that old, comfortable state of being where you never imagined anything so awful could happen to you. It is an exhausting and emotionally draining way to live, and took me a long time to shake.

I’m happy to say now that, as life returns to something like normal, I feel that level of worry less and less. Looking back now it is an intense relief to no longer feel that way, because it was my ‘go to’ emotional state for almost a year after Marc’s illness. At times I felt I would live the rest of my life in a constant state of terror. Thankfully, that is not the case.