Don’t get me wrong, I am deeply grateful to have survived encephalitis (e). I get to experience so many more moments with my family & friends. I get to see life in all its beauty and under a light that makes me want to explore it in a whole different way. I am fully aware that it is an opportunity that many my age through battling an illness or another get denied and I feel extremely lucky and I am forever grateful to hold the e survivor title.
That being said, surviving e is one thing, recovering from e and acquired brain injury (ABI) is another. No one prepared me for the real challenge which is to try to resume life as normal when all normalcy has been erased. It feels as though for years now all my efforts have been invested into one thing...getting better and trying to regain an elusive brain capacity and energy that would allow me to indeed resume life as normal. Years have passed since the diagnosis and the acute phase of e, yet so many things still seem out of reach. As people often tell me, I look well and strong on the outside, but I doubt that many understand the true toll it’s taken on the inside and on my mental state.
I read a lot on positive psychology, on dealing with trauma, grief and ambiguous loss, I do yoga, I never miss my psychologist appointments, I meditate, I have my nana naps, I do an endless amount of deep breathing, but the hatchet still comes down, rather abruptly at times, in the form of a set back or by simply not having my brain operate in a somewhat “normal” manner.
The list of challenges linked to surviving e and ABI is long and relentless. As I was released from the hospital, no one warned me about the challenges that recovery would represent. No one warned me about what feeling like a total stranger in my community, and in my own mind, would truly FEEL like. No one warned me about the constant battle of keeping my mental health afloat arising from the many life changes, from the ways in which I have to adapt to “function”, from trying to move on from this illness or from fighting inner demons which names were completely foreign to me prior to e.
I am often confronted with the following thought...in spite of the limitations imposed by my Weird Wonderful Brain post e and ABI, I want to go on living a life that is fulfilling and rewarding...but the real question is how do I get there?
When I initially started writing about my experience with e and ABI, it was mainly an outlet for me to express some of the pain and tourments that I was experiencing in what I hoped would be a constructive way. I still remember how scared I was when I finally went ahead and published my first blog. For sure I hoped it would be meaningful to, if not myself, someone else. However, it’s not until 1 blog became 2 and then 3, 10, 20 and now 50 that I fully realised that there is a vast community of people experiencing and relating to my own challenges. People from all backgrounds, all ages, all genders...it turns out that illness & misfortune does not discriminate. I randomly bounced into a friend of mine the other day and she was accompanied by her mom. Her mom told me about how eager she was to read my blogs when I publish them. She followed up by saying how she, within her own battles, related to my writing. She expressed how important it was to have people like me talk as openly as possible about all the underlying challenges that come in pair with my particular set of circumstances. She advised me to carry on writing as it is no doubt helping others too.
I often get positive comments about my blogs from online support group members, but it’s not often that I have people tell me face to face how meaningful they are to them. I think it is fair to say that she read right through me by saying that I look so strong on the outside, but that through reading my blogs, she can see how I’m also surrounded by a world of pain. A tear of joy rolled down my cheek because I felt as though all those long unpaid hours of writing weren’t done in vain. Someone else gets it and sees me, the real me. My blogs may not have paid any bills yet, but they may have had a flow on effect in the lives of others which is priceless.
Now I won’t stand here and pretend that I have found how to go on living this fulfilling, rewarding & meaningful life that I am after. Most days I am still stuck in the accepting phase of this ongoing process, but I am being more accepting of who I am and of who I am becoming so perhaps I am one step closer? For me, writing is one of the things that is left when so much has been taken away from me. I cherish this new opportunity with all my heart. Perhaps there is meaning in this? In my blogs, I try to paint an honest picture of what e and ABI recovery looks like. Writing so openly about my recovery is very scary as I put myself bare in front of the whole wild world and expose my strengths and weaknesses. I am not writing so honestly to scare off other survivors, but to raise awareness of e and most importantly of surviving e and ABI because the real challenges truly emerge once you hold that title.
By talking about the real challenges of recovery, I am hoping that others will relate and not feel so alone with their own journey. I am hoping to help them find their new normal when all normalcy has vanished. I am hoping to validate their feelings and acknowledge the newly acquired burden that they carry daily. I am also secretly hoping that the real challenges of e recovery get addressed and recognised by a health system that often turns the page on the survivors once they get to go back home. The feeling of isolation is real and when you are left to fend for yourself, it leaves the survivors with limited and often inadequate support to face the beast that is e and ABI recovery.
I don’t have this all figured out and I know that there are many other survivors, like me, who are trying to raise awareness. Raising awareness seems like a good place to start, but there are lots of other avenues that I’d like to explore to help make a difference in the lives of e and ABI survivors. I suppose I just have to keep chipping at it just as I keep chipping away at my recovery and perhaps change will slowly start being noticeable.
If you’d like to support me in raising awareness, I’d love to invite you to donate and share my Weird Wonderful Brain fundraiser page within your own community.
Until my next blog, look after yourselves!