Updated: May 22
It's been nearly 4 years since contracting a brain inflammation called encephalitis (e) which lead to an acquired brain injury (ABI). Four years on, I am still trying to make sense of my new life and still seeking understanding of the aftermath that followed e. At times, it is really triggering to think of the lack of support that occurred on so many levels during those 4 years.
Along the way, my partner and I have lost faith in a medical system that operates in silos. Resources aren't shared across the board which makes it really difficult to be put in front of the relevant specialists. And when you do, the lack of communication between the different parties involved makes things REALLY difficult. You end up sounding like a broken record more often than not and it simply delays the whole care and recovery. The other part that really sucks due to things being so siloed is that many specialists do not grasp the flow on effect of your neurological condition, aside from how it applies to their specific field of expertise. To only make matters worse, some specialists (not all of them luckily), have a "know it all attitude" that can make their patients feel small or dismissed. A quote from Michael J. Fox which brings a fresh perspective and that I feel should be part of any medical training is the following:
"The people living with the condition ARE the experts."
You can learn a lot from books, but experiencing a condition first hand can also be your best teacher. Like many things in life, unless you go through a similar experience yourself, it's often REALLY hard to relate & understand how deep things can run. For a long time, I was very frustrated at the lack of care, support and information being relayed back to us. I knew that holding on to all this frustration was counter productive, so at some point, I eventually made the conscious decision to try to turn the situation on its head. What happened to me happened and I can't change it, however, it's not too late to speak up for change to occur so others don't have to go through the same rollercoaster...and believe me, my case isn't an isolated event at all when you start talking to other brain injury survivors.
How does change occur though?
I feel that changing the way the whole medical system operates is unlikely to occur anytime soon. Although a few strings could pull here in there, I often feel that it's unlikely that I'll see a drastic change occur in my lifetime as it would imply a HUGE shift. So the question is where to next then?
Well for me a great place to start is by sharing our stories and by raising awareness of what life is like following a brain injury, regardless of how you came to earn the title. By sharing our stories, we can learn from the great ones and gently push to have them replicated elsewhere. By sharing the not so great stories, we can identify the gaps and try to pull some strings in the hope to see gradual change occur in the way that people are cared for (during and after the hospital stay). The other thing that I have come to realise is that there is power in numbers. Where some clear protocols have been established for some neurological conditions, it is not the case for all neurological conditions. I would say that encephalitis falls fully into this category as it's somewhat of a rare brain illness. The more the medical staff comes across a certain condition, the easier it becomes to identify, treat and therefore develop and offer the services that will help a patient during their recovery.
For the past 12-15 months or so I have dedicated a fair amount of my time in raising awareness of e and life after ABI. I've done that through writing & sharing my blogs within and outside the brain injury community, by seeking exposure in the media, by fundraising, by being pro-active in the social media, by joining online support groups, by joining the board of my local brain injury association and by getting involved in so many other ways, but getting any sort of traction has been so SO hard. See, I'm just an ordinary woman, going about her ordinary life and as far as e & ABI survivor goes, I am one that had somewhat of a favorable outcome in the eyes of many.
Although my Weird Wonderful Brain is far from functioning to the levels that I was accustomed to, I can still go about my daily routine...most days anyway. So unless you get a push from somewhere, my experience has been that it's pretty hard to get any sort of positive exposure that could ultimately help trigger change. Remembering my experience of the health system following encephalitis, I started to shift my focus. If there was to be power in numbers, perhaps it could pay off to start connecting with other survivors to establish collaborations. Perhaps, as a united front, we can manage to share our stories within the brain injury community and talk openly about what works well and what needs to change. It will no doubt be baby steps, but we may start implementing some of this much needed change if we all work towards a same goal.
Since I haven't given up on being a conductor of change, it appears that I haven't lost complete faith in our health system after all. A part of me still thinks that we can get there. I believe that even small tweaks within the current health system structure could be highly beneficial to brain injury survivors. My plan is to keep working towards those incremental changes for a while longer.
Fellow brain injury survivors, would you like to help?
When it comes to e, there are great resources already available, but the challenge is to get them in the hands of this siloed health system, and consequently, in the hands of the survivors themselves. A few very neat ladies and I are in the very early days of discussing a strategy to have those resources more readily available and shared. If you feel like this is something that you'd like to get involved with, please flick me an email and I'll be happy to keep you in the loop.