Updated: Jan 29
My brain injury was acquired following a brain infection called viral meningo-encephalitis.
It all started pretty suddenly for me. I was vacuuming when I felt like something had hit me behind the head leaving me headachy and foggy. Never having been troubled by headaches before, I thought to myself “I must be tired...early night and I’ll be all better in the morning”. I made it to work the following day but I was on double dose of painkillers every 4 hours and that was only taking the edge of this terrible headache. I got back home late that afternoon. During the 5km drive back to our house, everything felt quite surreal as if I could not quite register what was in front of me. My neck was so stiff that turning my head to look in each direction was painful. Food wasn’t on the menu that night and the headache was so intense that I got next to no sleep. The following morning came and I could not comprehend what could be triggering such an intense pain. After a visit to the GP, my partner drove me to the hospital. By then even breathing was triggering massive fits of pain.
“At its worst, all I remember is feeling like people were screaming in my ears. I was wondering why are people so loud, we were at the hospital after all where people are meant to be recovering. It was like if every noise was being amplified and I also remember thinking something is really wrong here...this isn't a typical headache and they have to find out what is wrong with me.”
I thought I was truly starting to go mad. The smallest movements became a true mission, my heart was racing like crazy and everything was a blur…everything besides that tremendous head pain that just wasn’t easing in spite of the morphine I was being administered. The CT scan showed signs of sinus infection and they followed up with a lumbar puncture which rated pretty low on my list of discomforts on the day. As the hours passed, that intense pain gradually started decreasing. I got sent back home prior to the release of the lumbar puncture results with strong pain killers and antibiotics to treat for a “sinus infection”. The following days, the head pain kept slowly decreasing and I just remember thinking gosh I am glad that things are getting “better”. Little did I know then that although the headache was “much better” that things were going to be very different...for a long while!
How life changed
The weeks that followed the acute phase, so many things started resurfacing. My eyes weren’t tracking well, my vision was full of black spots and at times I would even lose my peripheral vision. I couldn’t read to save myself or when I finally managed to do so, I had absolutely no idea what it was I had just read. I remember having to fill out a form for my son authorising him to be part of a school activity and I couldn’t even complete it. It felt like everything was WAY too fast around me, I couldn’t keep up with anything. I had that feeling of being overwhelmed by the smallest things and I would get so confused. My heart would start racing for no apparent reasons and it felt like any noise around me would get mixed into one and I couldn’t make sense of them. I went from speaking eloquently in several languages to slurring, stuttering and being unable to put sentences together. And then there was the fatigue...intense fatigue like I had never experienced before. All of these effects were by far the scariest thing for me. I mean, how could you go from being a highly functioning individual to struggling with the most basic tasks of my daily life? After all, in my mind I was then only recovering from a bad sinus infection…
About two weeks later, things were still far from being right. Actually, some things like my speech seemed to be getting worse so I went back to see my GP. It’s only when my GP followed up with the hospital that the lumbar puncture results were shared. They showed a high count of white blood cell in the spinal fluid and I also tested positive to enterovirus. Upon further examination at the hospital, the viral meningo-encephalitis diagnostic was given to us. I remember thinking, oh that’s good, there is a name for this so surely they can fix me, surely they can help make that surreal world that I’m currently living in disappear right? But in the months that would follow, we then discovered that encephalitis and acquired brain injury don’t quite resolve with a magic pill. Patience is the name of the game. Patience and finding strength that you never thought you’d have to face everything that comes with this “new normal”.
Throughout this journey that is still ongoing as I write this today, I’ve learnt a great deal about myself and about the people around me. I’ve learnt that there are lots of people that care and keen to help. Born in Canada but living in New Zealand, I had never felt so far from my family. Luckily, in the months following the infection we were able to count on some good friends and my partner’s family to help juggles our 3 kids and the daily tasks that I just couldn’t attend to. I’ve learnt that strength isn’t only about breaking personal best records; that strength is also accepting to be vulnerable and to keep trying no matter what. Mind you, this is much easier said than done as acceptance doesn’t always come easy when you go from being a regular competitor to all the local running events to struggling to walk from your house to the dairy without feeling completely exhausted. I’ve learnt that going through life 110 miles per hour isn’t always the best way, that slow and steady also gets you places. I’ve learnt to accept that a win is a win no matter how small it might be. I’ve learnt that good caring employers are keen to support you by establishing a gradual return to work plan that maximises your recovery. I’ve confirmed what I knew for quite some time already which is that my partner and three young boys are the best thing that has ever happened to me. That they don’t care about how much my abilities and life as it was would change and that they will always be there to support and love me.
The list of things that still sucks and of ways in which I have to adapt to this “new normal” is still much longer than what I’d like it to be 3 1/2 years on, but I also know now that encephalitis has changed me for the better as well. Life is a bit like a roller coaster and that applies to all of us. It is filled with ups and downs and during its course, sometimes bad things just happened. No one has wished or planned for them to happen but they will. How you decide to face a challenge and how you keep trying again and again to step up to this challenge is way more important than waiting for a reason to be magically revealed one day. By reason, I’m referring the famous “why me” here. I know how valuable the life lessons I’ve learnt are over the past few years and I know that my kids have also learnt a great deal about resilience, perseverance and never ever giving up. As time goes by, I now catch more and more glimpses of the “old me” and that is really exciting as I got to a crossroad where I felt I had to stop giving encephalitis so much power over what I can or can’t achieve. That being said, I also realise that I still need to respect it as set-backs are still very real and just as heart-breaking.
The one thing I hope to accomplish in writing my story is to increase awareness around encephalitis. Increase awareness with the medical professional bodies and with the general public. Although encephalitis is a tricky diagnosis and that its effects can vary greatly from one individual to another, I do believe that knowledge is power. You often feel misunderstood as you are recovering to the point where you start second guessing yourself all the time. So don’t be afraid to put your foot down as what you feel and experience is real. Greater knowledge around its residual effects, about what to expect during the recovery phase and promptly providing adequate support can make a huge difference to those affected and their family. I do hope that better systems get put in place to support those who will have to face this challenge going forward. It shouldn’t be so hard to get access to proper investigation right from the start and to offer adequate care/support for those affected and their family once they get to return home. Having something play with your brain and scramble things up is very scary and support is priceless. The Encephalitis Society is doing an amazing work in that space and our family is so grateful for all the work you are doing to raise awareness and for all the resources you guys are providing. So in short, this is a very brief resume of my story. My words of wisdom are to never give up and be super patient…things do get better.