Encephalitis - My Story 9 Months On
A year ago I had no idea what Encephalitis was. I had vaguely heard of it, but that was it. This is despite an estimated 6,000 cases a year in the UK alone, 25,000 a year in the US. The figures are quite vague, and felt to under-estimate the true picture as many cases of Encephalitis continue to be undiagnosed. Even when diagnosed, the exact cause is often unidentified. The last year has been a steep learning curve for myself and those closest to me. On the 26th of May 2017 eight days shy of my 47th birthday and in a somewhat dramatic fashion I had a seizure and collapsed in the men’s bathroom at work. Following the excitement of an ambulance ride, that when told about later my two sons Nathaniel and Thomas were incredibly jealous about; high speeds, whirring sirens etc, I started my close to month long stay at the University of Washington Medical Center after being diagnosed with Encephalitis. All of us have pivotal days in our lives, days that in some respects come to define you. Friday May 26th 2017 was one such day for myself.
Encephalitis is a condition that involves inflammation of the brain, in my case due to a viral infection. In fact, I had a combination of Encephalitis and Meningitis. Encephalitis is when the brain itself swells, Meningitis being when the membranes around the brain, the meninges, get inflamed. Technically, I therefore had Meningoencephalitis, but we’ll leave it as Encephalitis! It is the swelling that makes Encephalitis so dangerous. Given that the brain is encased within the skull, it is limited where it can go if it gets inflamed. It can therefore push down on the brainstem, which controls vital functions such as breathing and circulation. If put under severe pressure the brainstem can cease to function. The result is that encephalitis can have an extremely high mortality rate. The form of Encephalitis I contracted was caused by the HSV1 (Herpes Simplex) virus, the form of Herpes that causes cold sores. Typically, I have never had a cold sore in my entire life. It is thought that in many cases the HSV1 virus may have been contracted during childhood and been dormant until something triggered its reactivation. The brain is normally extremely good at protecting itself from virus’, hence why conditions such as Viral Encephalitis are relatively rare. In my case though the virus breached the blood-brain barrier and infected my brain.
One thing I’ve learnt this last year is that encephalitis has a lot of tricks up its sleeve. Some forms of encephalitis have more severe symptoms during the acute phase of the illness. The book and film ‘Brain on Fire’ is about Susannah Cahalan who contracted anti-NMDA Receptor Encephalitis. If you haven’t read the book please do, it is brilliant although harrowing personal account of encephalitis. Anti-NMDA Receptor Encephalitis is a form of autoimmune encephalitis that can be accompanied by psychotic episodes during the acute phase. It was only discovered in 2007 and it is suspected that many people who had Anti-NMDA Receptor Encephalitis may have previously been mis-diagnosed with psychiatric conditions. HSV1 Encephalitis (HSE) has comparatively milder symptoms and even then I was relatively lucky. I didn’t, for example, fall into a coma, as many sufferers do. Many spend far longer than a month in hospital. However, although the initial symptoms may not be as severe as with some forms of Encephalitis, the HSV1 form can result in significant brain damage if undiagnosed and not treated quickly. I once came across the ‘delightful’ phrase that HSE can “rot the brain”. It also has one of the highest mortality rates of all forms. Anti-NMDA Encephalitis, for example, has a mortality rate of 7%. In comparison HSE has, if untreated, a mortality rate of 70 to 80%. Even when diagnosed quickly, as was thankfully the case with myself, the mortality rate is still around one in three. Effectively it just doesn’t mess around. It acts like a Bond villain should act. Rather than toying with 007, taunting him with its cunning plan for world domination, HSE just goes for the kill. Bluntly, I’m lucky to be here.
The second trick encephalitis has up its sleeve is that the severity of the symptoms during the acute phase of the illness and a patient’s long-term prognosis are not necessarily related. You can make a virtually complete recovery even if you were extremely ill during the acute phase. You could though also have quite significant long-term consequences even if initial symptoms were mild. Touch wood, it would so far seem as though I have been lucky twice over. My initial symptoms could have been worse than they were. Indeed, I’m still here and with HSE that is the biggest achievement. It also looks as though I am making an okay recovery. However, it is all relative. There are still enormous challenges I face as a result, it is just that in comparison to what could have happened I have been incredibly lucky. There have been some heart breaking stories I have read about, cases where infants less than a week old have contracted encephalitis. There was one story where a girl was found to be suffering from Rasmussen’s Encephalitis, a rare form of the condition where just one hemisphere of the brain gets inflamed. At the age of three she had the entire right hemisphere of her brain removed. It is stories like these that make you realise how incredible the brain is at adapting and healing itself as that little girl is today leading a normal life. These stories are also the ones that make you appreciate how lucky you are and also inspire you to keep on fighting.
The added complication with myself was that the HSV1 virus also caused a second condition, Rhabdomyolysis. Rhabdo is a muscle wasting condition that results in the protein myoglobin being released into the body's system. This puts the kidneys under stress and can in severe cases result in acute injury to the kidneys. The most common cause today of rhabdo is sudden changes in exercise routines. A relatively high number of new army recruits suffer from rhabdo during basic training. It isn’t unheard of but the combination of Encephalitis and Rhabdomyolysis due to a virus was unusual enough that it was of keen interest to the doctors at UWMC. One of the key measures in the treatment of Rhabdo is your Creatine Kinase (CK) levels. A figure of 1,000 would indicate Rhabdo and a severe case would be viewed as one where the CK levels go over 5,000. My levels peaked at 65,000. Saying that a friend of mine also had Rhabdo last summer and his CK levels peaked at 135,000 whilst the highest figure ever observed is 1,600,000. A major problem for my doctors was that the anti-viral treatment for HSV1 Encephalitis is not great for the kidneys and you need them operating at full capacity to process the myoglobin. At one point my kidney function fell overnight from near normal functioning to 25%, a severe enough position that I was also classified as suffering from an Acute Kidney Injury (AKI). One thing then became apparent; doctors take kidneys extremely seriously. As one of my doctors said, “you really don’t want to mess about with your kidneys”. It was at this point in my hospital stay that the Northern Irish Renal Team came onto the scene. It was just after the UK General Election and a room full of American nurses and doctors were left somewhat baffled as the two of us discussed the finer points of the DUP supporting the Conservatives! Once our political discourse was complete my planned discharge was delayed, I was taken off Acyclovir, the anti-viral drug used to treat the encephalitis, and flooded with IV’s to allow my kidneys to recover.
I have been lucky in so many different ways. I was lucky that being the workaholic I am I was in the office on a Friday evening. This all happened before Alison, Nathaniel, Thomas and Abigail had arrived in Seattle and before Ruby was born. I was therefore living on my own. Had I gone home at a normal time, like a normal person, I probably wouldn’t have been found for two or three days and in all likelihood I would not be here today. I am lucky that I had the seizure and collapsed in the men’s bathroom and not in my office. I am lucky that there was a student happy hour in Gould Hall that night and therefore there were people around who found me quickly. I am lucky that my Doctors suspect that my seizure occurred fairly soon after the initial infection, thereby limiting the potential damage, so important with HSE. I am lucky that I work at the University of Washington that has one of the best Medical Schools in the United States. I am lucky that attached to that medical school is a phenomenal research hospital where my ‘atypical’ symptoms and especially the combination of encephalitis and rhabdomyolysis caught the attention and interest of the medical staff and faculty. Being treated at UWMC contributed enormously to the quick diagnosis that meant treatment started within 24 hours, thus reducing the mortality risk considerably. It also helped that there had been a couple of recent Encephalitis cases in the hospital. This meant that the paramedics and the staff in ER were more finely attuned to the symptoms I was displaying. I was lucky that the medical insurance scheme the University of Washington offer is great. I don’t want to get political here but I am very aware that some people in America would not have received the level of care that I did. I was also incredibly lucky in that, with Alison being seven months pregnant and in London, I had in Seattle one of my closest friends, James Young. Having someone there to look after my interests before Alison was able to travel to Seattle was so important and I couldn’t have asked for anyone better to do that job than James. That’s a lot of luck. Believe me, how lucky I was has been a constant refrain over the last nine months.
I don’t remember much of the first week in hospital, the first few days are especially patchy in my memory. I remember everything up until the seizure. I had been having bad headaches for a few days and they just weren’t shifting. During the course of the Friday I also began to feel nauseous. At around 6.30 I went to the men’s bathroom. I remember standing there and starting to feel dizzy and disorientated, vertigo like symptoms, and that is it. Everything else for the next few days are snippets of information, almost like stills from a movie that was going on in my absence. I remember waking up surrounded by a group of people, I remember being put in the ambulance and taken to ER but I have no memory of the journey from the 4th floor of Gould Hall to the ambulance. In hospital I vaguely remember being in ER and having the first of my Lumbar Punctures. I remember collapsing in my room after my transfer from ER to the ward. I think I fell out of my bed, but I am not totally sure about that. I remember one of the Care Assistants, a giant of a guy called David, helping me back up. However, I have no recollection of the journey from ER to the ward. I remember having an MRI scan but I could not tell you though whether that occurred while I was still in ER or if I’d already been transferred to the ward. I suspect it was after I’d been moved upstairs but I’m not 100%. I subsequently met doctors, nurses and other hospital staff who saw me during that first week that I had absolutely no recollection of. It became apparent to me while I was still in hospital just how bad I was when I arrived. Doctors and nurses are supposed to be good at hiding things but you could tell that there was a degree of relief as I started to get better. One of the nurses who had been on duty in those early days hadn’t been around for much of my stay. She was on duty though when I was discharged and while I had no recollection of her she couldn’t believe that I was so much better and was being discharged only a few weeks after being rushed into ER.
It wasn’t just people that I forgot. There were also elements of my case that I totally forgot about. I forgot that I’d had pneumonia. This was due to the amount of IV fluids I was being pumped with to flood my kidneys to help with the treatment of the rhabdo. I also forgot for months that there had been a conversation about the possible need to have a brain biopsy. I remembered about this while reading Susannah Cahalan’s ‘Brain on Fire’. I had actually bought the book before all of this happened but just never got around to reading it. After I was discharged it took another few months before I felt emotionally strong enough to read it. Months later I read the book in one sitting during one of my many flights back and forth to and from London before Alison and the kids arrived in Seattle. In the book the author talks about having a brain biopsy and suddenly all of that memory came flooding back. I became one of those weirdos you occasionally see on planes who suddenly starts sobbing uncontrollably. I subsequently asked James and he confirmed that there had been such a conversation. I still don’t remember the details but he said that it took place during the first few days. I wasn’t responding to treatment as well as the doctors had hoped and the conversation was in the context of who had medical power of attorney; I was not in a state to agree to anything. Apparently, if I hadn’t started showing signs of responding in the following twenty-four hours that would have ceased to be an issue as a biopsy would have been a necessity so that the doctors could better see what was going on.
It was extremely hard going through this so far from what I still thought of as home and away from family. I had been in Seattle full-time for less five months when this all happened. Since last May I have seen the best of people and of America, witnessing and experiencing remarkable kindness. I’ve also had some less positive experiences, but we will leave those for another time. The staff at UWMC were phenomenal; from my primary team, to the specialist infectious diseases, renal and neurology teams to all of the nurses and care assistants on the ward to physical and occupational therapy. I really did feel like I was living out an episode of House at times. The medical students were fantastic as well, one of them phoned Alison in London to keep her informed as to what was going on.
As well as the serious business at hand there were some lighter moments. There was, for example, the day when four MD’s plus a patient with a PhD could not work out how a table worked. We tried for ten minutes to move a tabletop and lock it in preparation for my second Lumbar Puncture. We failed spectacularly and then took a collective vow of silence not to tell the nurses and care assistants as none of us came out of that looking good. There was also the time early on, when James was apparently standing guard outside my room. He had realized that I badly needed some rest and wasn’t letting anyone in unless they had a damn good reason. While standing guard he got chatting to one of the nurses who proceeded to assume he was my father! I think it is safe to say that I find this story far more amusing than James does given that there isn’t much difference of an age gap at all between us. I’m also incredibly proud, in my usual slightly warped way, that I was prescribed caffeine pills. Only after both James and Alison had explained to the medical teams that the headaches I was having were probably as much due to caffeine withdrawal as the whole swelling of the brain did the doctors fully appreciate just how much coffee I drink. To drink so much coffee that you are prescribed caffeine pills due to withdrawal is impressive, especially so when you are dealing with doctors in Seattle. Now that is a lot of coffee!! There was also a ban imposed in my hospital room on the word “gusher”. This was after my replacement PICC line was being removed and the phrase “let’s hope it’s not a gusher” was uttered!!
The impact has been substantial, in some instances directly related to either the encephalitis or the rhabdo, or a combination of the two. However, some of the consequences have just simply been dealing with the realisation that I nearly died. I spent the best part of the summer back in London as we waited for Ruby to be born. A lot of that time was taken up with reading about encephalitis. Given that I’d been out of it early on during my hospital stay I hadn’t been able to read up on it. Unlike Alison and others, I didn’t fully appreciate the seriousness of what I was going through. It was a strange summer in that I spent much of it retrospectively realising just how serious encephalitis is, just how ill I had been and just how close to dying I had come. Yet at the same time I was also appreciating just how lucky I was both to be still here and that it could have actually been far worse. In a way, this helped as I already had some distance from the worst moments and could start to appreciate just how lucky I had been. Alison and others didn’t have that luxury.
The longer term and ongoing effects have been considerable. The biggest issue, as is common with encephalitis, is fatigue. It is gradually getting better but I still have to pace myself. What is especially frustrating is forcing yourself not to over-do things when you are feeling okay as it will come back to bite you in the rear in a day or two. Encephalitis causes fatigue as, put incredibly simply, the brain heals itself better when you are resting or asleep. When the body needs to help repair the damage to your brain it will tell the rest of you to take it easy. Scarily there were a couple of times last summer when I had no recollection of falling asleep, I just remember waking up. I once woke up on the floor upstairs. I had no idea how I came to be there or how long I had been there. One time Alison found me, face down at the desk in the office at home. After those two incidents, I was grateful that due to the seizure I wasn’t able to drive for six months. The fatigue also had other consequences. Once I got back to London I naturally wanted to spend as much time as possible with the family and especially with the kids. The problem was that I couldn’t, or at least not to the degree I would have liked. The resulting fatigue was just overwhelming. I then had to deal with the guilt as Nathaniel, Thomas and Abigail didn’t understand why daddy couldn’t do some things and couldn’t play with them all of the time. It wouldn’t be the only thing that was a challenge to them.
The issues with fatigue were made worse in that I effectively got a double dose due to the rhabdomyolysis. In the immediate aftermath my thighs in particular just disappeared and I spent most of last summer trying to bring ‘baggy’ back. Even my tightest jeans looked as though I had bought them in Manchester in 1990. I’ve therefore had the balancing act of needing to build back my muscle strength but at the same time still trying to pace myself. The rhabdo had been especially evident in my left leg. Even today, if I overdo things I get physically tired there and can walk with a slight limp due to weakness in my left side. In a way it is a good early warning system that I need to ease off the gas and take it easy. I can pretty much tell what type of fatigue I am suffering from as the rhabdo induced one is very physical in nature, especially in my left side, while that related to the encephalitis is more of an overall feeling of being drained. As with a lot of my symptoms I still have effects but they are getting less and less frequent. Some days you feel you can conquer the world and are physically okay. Other days are hard work. Back in November the front yard needed raking but after a few minutes I was exhausted and I remained so for the rest of that day and the day after. Generally, it also takes a lot longer than usual to bounce back from things. I’ve also begun to appreciate just how interlinked the body is. If you are physically tired it leads to increased mental fatigue, and vice-versa. Resuming lecturing in January has been a struggle as I have been pushing myself both mentally and physically. I can tell you that I have been no good to anyone on Tuesday or Thursday evenings this term after teaching my classes in the afternoon.
While the fatigue has perhaps been the most obvious problem it was by no means the only symptom. Effectively the brain re-boots itself after encephalitis and that can have a number of consequences. For example, your senses can become heightened. With the exception of my sense of smell, which has virtually disappeared, I have had Spidey Senses since last summer. My hearing, in particular, is incredibly sensitive. During last summer I could be upstairs and hear a conversation downstairs at the other end of the house and it would sound as though the people were stood next to me. I found it quite overpowering at times, especially when in groups. I’ve had a long-standing hearing issue that means that I already find it difficult to block out background noise. This just got ten times worse. In a group of even five or six people I found it incredibly hard to separate out different people and noises. When you have three children and a fourth soon to arrive that can make things very challenging, especially when the oldest is only just approaching his fifth birthday. This was another thing that was hard on all of us, when I had to walk away and into a different room when I found the noise too much. It wasn’t just my hearing, my touch is very sensitive while my taste has totally changed. I continue to struggle here, finding some flavours over-powering. Food was, and remains a challenge in another way. I often would crash after eating. I’ve therefore had to adapt my diet and eat more slow releasing complex carbohydrates, or as I still keep inadvertently calling them “complicated carbs” as though they were some long suffering anguished artist suffering for their art. The Damien Rice of carbohydrates.
It is also common to have issues with balance, co-ordination and fine motor skills following encephalitis. In my case this was again made worse due to the rhabdo and the muscle wastage. My left side, where the rhabdo was more pronounced, feels this more. Not only do I feel fatigue quickly in my left leg but I often get pins and needles and numbness in my left hand. Being left-handed, and that the damage following my seizure was more pronounced in my right frontal lobe, has further added to these challenges. As a result, during the first few months I was constantly dropping things and generally displaying a level of clumsiness that was unusual even for me. None of this is good when you have a five-year-old son obsessed with Lego. I’m no longer viewed as a “Master Builder”, there has been a definite changing of the guard here, I’ve been relegated to helper status these days.
Especially during last summer the hardest part for myself was the ‘not knowing’. Not knowing how I was going to feel the following day; not knowing what symptom would be to the fore. Some days I would have issues with fine motor skills, some days I’d be dizzy and have balance problems, some days I would be wiped out with fatigue, some days I would be okay and then like a fool over-do things and pay for it later on. When I was coming to terms with what I was capable of doing and learning how to pace myself there were days where I slept for 18 hours or more. It made it impossible to plan ahead. I would wake up and I would spend the first five minutes working out what was going to be “today’s symptom”. Somedays it would be fairly clear early on, somedays you’d think you were okay and then something would sneak up behind and bash you over the head with a steel baseball bat. That was also the case with the virtually constant headaches I was still getting. They varied so much. Some were fairly normal but others……..oh boy. Especially while I was in hospital I got really severe headaches right behind my right eye, again the part of the brain that was most affected by the seizure. I still get those but thankfully not very often. I also used to get ones that felt as though my entire head was swirling around.
Something that is very hard with encephalitis, as with other brain related injuries, is that many of the consequences that all survivors face are physically hidden and unseen. So often people focus on what they can physically observe and that if someone looks okay than they are alright; “well he looks fine to me”. I was often told that I looked better than people had feared. On the one hand, this was a great thing to hear but on the other hand people can underestimate the ongoing challenges you face. The parallels with mental health are striking. I’ve had my own battles over the years but I thought we had made progress as to how mental health issues were perceived. What has been very clear to me over the last year is that we have made nowhere near the progress I thought we had.
There have though been many positives where I have been incredibly lucky compared to other encephalitis survivors. It is common for people who have had encephalitis to suffer from sustained memory issues. Some sufferers forget people, even close friends and family, as well as major events in their lives. They can look at pictures and not remember the event or the people in the picture. I’ve been very lucky in that while I have had some issues they have been comparatively minor. I do find it hard to switch between topics, I need to get into the swing of something and get focused on it, and then I’m fine. If I have to repeatedly switch topics my mind can just go and I end up with the memory of a goldfish. However, as some friends, good ones I hasten to add, have said; “your short-term memory was always rubbish so how can we tell if it’s got worse?”. I’ve also been lucky in that it appears as though the impact in terms of vision or speech impairment has been nominal.
In contrast to many Encephalitis survivors, I don’t suffer from an obliviousness to my new found limitations. If anything I go to the other extreme and can be too harsh on myself. Alison has to remind me how well I am doing. Too frequently I compare myself to the ‘old’ me at the top of his game. More generally, there continues to be an element of wondering what, if any, parts of me will change and to what extent. How much of the old me will still be there? One of the biggest fears I had was that I would not be able to resume my career at the same level as before. The margins in academia are small. This is especially so when it comes to research. My fear was, and to some degree still is, that I would potentially loose that little extra something I bring to the table. I probably came back to work too early but circumstances meant I felt unable to take more time off. I only left hospital at the end of June and while I managed to spend a couple of months back in London I worked at least some part of most days during the summer and by the end of August I was back in Seattle and fully back at work. Retrospectively I should have followed the advice of the medical professionals and taken at least six months off after leaving hospital. It is viewed that it takes at least 18 months for the brain to recover from Encephalitis. It meant that I was still very much in recovery mode when I resumed work. Not only that but I was head of a brand new academic department, with three new faculty hires arriving. I’ve had to adapt my working regime around the ‘new’ me. I try and give myself at least a few minutes between meetings in order to regroup and reorder my thoughts. It is also sometimes hard, and never less than strange, coming into work every day, into the building in which I nearly died. It is especially so if I am working late and sharing the building with just a few hard working graduate students. It is as though I am also sharing it with a ghost of that night.
As the months have gone on I have though begun to embrace the potential changes, the “new me”. My perspective is that every major event in our lives, good or bad, changes us and helps to define who we are. The only difference here is that this can be attributable to a very specific event and that there is a direct physical and medical context as well. There is though no real difference with any major other event in our lives, like when your heart is broken for the first time. Whilst seeming impossibly difficult at the time, it makes all of us who we are. Whoever comes out of this is still going to be me. I may be different but it will still be me, a me that has been shaped by the events of the last year. If you think about it, it would be totally ridiculous if there had been no impact, if I wasn’t different. We all continually change throughout our life, change that is influenced by our experiences. I am not the same person I was when I was 17, but I wasn’t that person by the time I reached 27. I was different again by the time I was 37. The person that writes this today is a result of all of the experiences and events that I have gone through in my 47 years, including but not limited to my dance with the devil last May. The key thing is to realise why change has come about and to understand it. As a good geek I will quote Doctor Who, the 11th Doctor to be specific; “We all change, when you think about it, we're all different people; all through our lives, and that's okay, that's good, you've gotta keep moving, so long as you remember all the people that you used to be”.
One of the biggest impacts has however been the emotional affect. It is common to see quite distinct personality changes following encephalitis. I don’t think that has happened much, however others are probably better placed to comment on that. It is however noticeable that I can become more emotional about things far quicker than in the past. It didn’t used to take much in any case but it is far more evident now. How much that is a direct result of the encephalitis and how much is just dealing with a brush with mortality I don’t know. Having a young family made this all particularly hard to deal with. This was especially so given that Alison was pregnant with Ruby at the time. The fear that I would never see Ruby was never far from my mind until the day she was born. There will always be something special between Ruby and I. Very few people got a look in for the first few days after she was born. We had our father-daughter trips into London, including her first, but probably by no means last foray into Soho. Before Ruby was two weeks old the two of us, by ourselves, travelled north on the train to Yorkshire to visit family. If I’m honest that trip was as much about being able to prove something to myself as introduce her to family.
Despite all of the good luck and the positives that have come out of it, it was still a brush with mortality that I would have preferred not to have had to deal with. It was very strange hearing that my name had joined the list of people being prayed for at the Church I had attended for years as a child, the same church Alison and I had married in only six years previously. I had sat there for years hearing names being read out, many of them unfamiliar to me. Now I joined those names; for some an anonymous name, for others Roy and Cath’s son, for some a name they hadn’t heard in a very long time. I will also say this; encephalitis can take you places that are not particularly comfortable. There were moments, brief pockets of time, when I was in hospital when I hoped that I wouldn’t get through it. Once you have go there, however fleetingly, those thoughts take you to dark places, places I am still making my way back from. More generally it is natural that your mind does wander, probably too often, to what might have been. It is fair to say that there has been a fair amount of brooding over recent months. Some of that can be egotistical and self-absorbed, thinking about how you would like to be remembered. My funeral, for example, is now totally organized and sorted out, all of the readings, all of the music etc. Spoiler alert! Expect some W.B.Yeats and maybe some Dylan Thomas, while you’ll be leaving, although hopefully not for decades to come, to the dulcet tones of Elvis Costello’s version of “Peace, Love and Understanding”, maybe followed by Oasis’ “Don’t look back in anger”. How can I resist? “So I’ll start a revolution from my bed, cause you said the brains I had went to my head”. On a less mournful and morbid note, much of the reflection and contemplation is concerned with looking forward. I have another chance and that means that I can, indeed I should, focus less on how I would like to be remembered and more on how would I want to live. I will say this though, whilst there may be changes resulting from everything that has happened, on one issue I hope there isn’t. As friends and family will readily attest to, it has never taken much for me to ascend the often chilly high moral ground. Looking forward I hope that doesn’t change. If we’re not prepared to argue and fight for what we believe in then, really, what’s the point?
During the last nine months I have been writing a lot. Writing has made me appreciate more than ever what I do have, namely the most incredible family and the most remarkable friends. Having the most extraordinary partner and soul mate in Alison who has had to endure so much over the last year. I can’t sum it up better than one of my closest friends who spoke to me recently about Alison’s “generous spirit and amazing strength”. Having a five-year old son who is more obsessed with Star Wars than anybody I have seen since my own 7-year-old self who saw the original movie on its release back in 1977. Although, slightly worryingly, Nathaniel has always associated far more with Darth Vadar and Kylo Ren than Luke or Obi-Wan. Having a three-year son who personality wise is a mini version of me. Thomas has a smile that will capture many hearts over the years. I can only hope that he will not break that many, at least not intentionally. Having a two-year-old daughter, Abigail, who is already a social media legend with her endless exploits and adventures, and who can wrap her daddy around her little finger. She does though push her luck when you see a brown handprint on the wall and all you can do is pray that it is chocolate. Finally, having a baby daughter, Ruby, who I am just grateful that I got to meet. It is strange but it is as though Ruby intuitively knows when I need to hold her and that I need to hold her as much as she needs to be held by her daddy. Her timing is perfect.
Writing has also made me realise that maybe all of us look too far afield for inspiration. We all search for good stories. We all flock to the movies, watch TV and read books looking for great stories and remarkable characters. However, in reality the greatest stories are those around us. Writers and actors merely put into words the love, heartache, jealousy, grief, joy, frustration, friendship, yearning and anger we see every day. One thing I have realised over the last year is that some of the greatest heroes and heroines I have come across aren’t actually from movies or books but rather they are people I know. People who face insurmountable odds in everyday life, doing the best they can. That is of course with the exception of Luke Skywalker. He will always be my greatest hero.
One of the strangest things I’ve had to adapt to is that for the first time in my life I dream. Let me rephrase that. We all dream, but in the past it was rare that I would remember mine. Today I do. Maybe it’s because it is the first time I am remembering them but they appear so vivid, so real. I dream of Alison, Nathaniel, Thomas, Abigail and Ruby. I dream of friends and family I see regularly But I also dream of long departed family and old friends, some from childhood, people I haven’t seen in ten, twenty or thirty years and I realize how much I miss them, how much we went through together. Some of the messages I received while in hospital that had the biggest impact were from people I hadn’t seen in years, people that I may never physically see again. One of my most vivid dreams was like a scene from The Sopranos,…..in a good way. I am sitting outside a café, at a table on the street. I am alongside my maternal grandfather and we are playing dominoes, just as we used to do forty years ago. What is it with grandfathers? It seems as though one of their jobs in life is to teach their grandchildren how to play dominoes. There we are; myself as I am today, my Grandfather as I remember him, and we are playing dominoes one more time, the smell from his pipe filling the air. He is telling me stories, stories I had heard a thousand times. Stories about how as a young man back in the 1930s he had competed in early motocross competitions. I remember back in the seventies holding aloft the trophies he had won. As a little boy, only just a little older than Nathaniel is today, I was in my mind Emlyn Hughes, the then Liverpool FC captain, holding aloft the European Cup. My Grandfather though had won those trophies on his motorbike, winning over my grandmother’s heart in the process with his dashing image; him and his motorbike. He was James Dean twenty years before James Dean.
The dreams are though where Nathaniel, Thomas, Abigail and Ruby really come into play. The four of them are not just important because I want to be there to help and support them, to see where they go and what they do with their lives. More often than not, it is them that I dream about and in those dreams I am transported back to being a little boy again. The last year hasn’t been easy and many challenges remain and are fought with every day. What keeps me going more than anything is seeing Nathaniel, Thomas, Abigail and Ruby’s imagination and enthusiasm, untainted by the baggage that all of us inevitably collect over the years. Together with Alison, they are my greatest supporters, motivation and inspiration and the reason I get out of bed every morning. On behalf of all of us who are still struggling with the aftermath of encephalitis thank you to all of the family and friends who help support us on our long road back. We couldn’t do this without you.