Originally from Quebec city, Canada but living abroad in beautiful New Zealand since 2008, my brain injury recovery journey began in August 2017 after contracting meningo-encephalitis, which is essentially an inflammation of the brain and of the membranes protecting the brain and the spinal cord (meninges). As I am writing this today, my recovery is still on-going and it is filled with lots of weird and wonderful. I have grown tremendously as an individual and learnt so much about myself, the brain and the people around me.
Since falling ill with encephalitis, I sure have developed a whole new appreciation for my brain and discovered many of the ways in which it can be affected once you sustain a brain injury. As a consequence of all the different aspects of my functioning that have gone somewhat "wonky", I have also developed a new appreciation for the number of health specialists that can be involved when it comes to brain recovery. There are lots of commonalities between one encephalitis survivor and another, but yet, no one size fits all approach exists when it comes to maximising your recovery.
What have I found?
My personal experience has been that it took me a while to fully realise and understand how encephalitis and ABI had affected my whole functioning and it took me even longer to have all the residual symptoms investigated by the appropriate health specialists. Be prepared to have a few of those specialists puzzled by some of your symptoms or to leave a specialist appointment without the answers you were desperately hoping for. The brain is a complex organ and although medicine has made leaps and bonds since the 90s, when it comes to understanding the brain, there is lots more to be discovered to fully grasp all its intricacies. It can be disappointing when you are looking for answers that could potentially assist your recovery, but it is sadly the harsh reality of neurological disorders, encephalitis being one of them.
Who was involved in my recovery/rehab?
Along the way, health professionals will be sharing their knowledge, giving precious advice, working alongside you and your family through the various steps of rehabilitation and if you are lucky, some will even keep investigating your symptoms to get a better understanding of what your weird wonderful brain is up to. I am not going to lie, in some cases, it took a while to find all those great specialists. It required a lot of effort and I'll also say nagging, but it's worthwhile persisting as appropriate support plays a pivotal role in brain recovery. Only to name a few, health specialists that have played a role in my recovery included: GP, Physiotherapist, Occupational Therapist, Speech Language Pathologist, Neurologist, Neuropsychologist, Psychiatrist, Psychologist, Cardiologist, Ear/Nose/Throat Specialist, Behavioural Optometrist, Endocrinologist, Dietitian/Nutritionist, etc. Encephalitis recovery can be a complex journey and chances are, your blurb will be well rehearsed by the time you meet the nth specialist. In spite of all the very clever and great specialists that have been part of my recovery, I feel that the most pivotal people have been my family, some close friends and having the opportunity to liaise with other encephalitis survivors. People that are close to you or that have walked a similar health journey simply "get it". They see or experience the ups and downs of that roller coaster that we find ourselves on and their support is priceless in bringing a sense of normalcy.
What is needed to maximise recovery/rehab?
In terms of support from specialists or even basic support once you are released from the hospital, I all too often find myself saying that it's a numbers game. The reality is that encephalitis isn't as common as other neurological illnesses and this can have a direct impact on specialists' knowledge and understanding...which can in turn affect your diagnosis, treatment and recovery. In the early days of my recovery, it was pretty much left to us to figure things out. No information was communicated to us in terms of what to expect during the recovery phase of the illness or as to who to seek support from. In our quest for answers, we were lucky to stumble across The Encephalitis Society. We must have read all of the resources available on their website and it sort of gave us a roadmap of areas to explore. It offered a tremendous amount of knowledge, information and guidance, which to this day, we are very grateful for.
Whether we like it or not, it is very much of a numbers game and that is why campaigns such as "Encephalitis Information Week" are so important. Increasing awareness of encephalitis and of life after encephalitis within the medical body is one of the first step towards timely & accurate diagnosis, prompt treatment, but also in making sure that the patients receive an adequate level of support once they get to go back home as this can make or break their overall recovery. Resources are readily available and making patients and medical professionals aware of their existence can only assist in lifting the current level of care provided in many countries. There is no point in reinventing the wheel right, so let's just work together on bringing these resources in the hands of those who need it the most. When people ask me why I'm so passionate about this, my answer is always the same: "It's solely because I would hate for you or anyone else to be left scrambling like we were." That usually strikes a cord. At times, encephalitis has been a long, difficult and lonely journey and that's why I'm now trying to give back in any way I can.
Final words...
I think that the important thing to remember when it comes to encephalitis recovery and rehabilitation is that you know your body best. If you feel something is off, try not to second guess yourself or to let specialists tell you otherwise. What you are experiencing is real. As hard as it might be in the early days of recovery, be prepared to advocate for yourself and you will always be your most powerful advocate. If you aren't in a position to advocate for yourself, ask someone you trust to help you out. Apart from the physical aspects of recovery, there is a huge mental component that is not to be underestimated hence why adequate support is required to lighten the load. Be hopeful and don't give up, progress still occurs long after the initial period of recovery so that's something to hold on to.
Living in NZ?: If you are a health professional or you are indirectly or indirectly affected by encephalitis, please visit https://www.encephalitis.info/australia-and-new-zealand for more information and resources.
