Updated: Sep 12
Encephalitis recovery comes with a lot of ups and downs. One day you feel like you are practically back to your old self, and the following day, all you can do is lie in bed feeling miserable. Your brain now has to jump through so many hoops and go through so many detours, no wonder you can often feel such intense fatigue, no wonder your processing time appears to be greatly slowed down. Those two consequences alone of a brain injury can have enormous effects on a person's psyche. Self-doubt is one of them, feeling like you aren’t good enough anymore, feeling too slow, feeling like you are constantly disappointing people around you, feeling like you are struggling to accomplish tasks that were second nature to you, feeling like you can’t hold up to your usual standards…feeling like you are failing, all the time!
The feeling of failure is a hard one to process. I’m sure you can all recall a moment in your own life where that feeling invaded your thoughts and that you can vividly remember how it made you feel. Yeah, it wasn’t a nice feeling was it? It comes with deep sadness, self-criticism and can churn up a lot of questions too.
As part of my recovery and to help me deal with all the cognitive and life changes that came about following “e” and brain injury, I quickly thought it would be advised for me to seek the support of a psychologist. I’m usually pretty good at reading situations, motivating myself and I can often see beyond the raw emotions, but the list of changes was so long that I was happy to concede that this battle couldn’t be fought alone...hence why I started looking for outside help. I went through a list of local psychologists, double checked their profile and specialty and I ended up narrowing down two or three with experience with fatigue management and trauma. Before I even mentioned the names I had narrowed down to my Occupational Therapist (OT), she recommended a name which I had already highlighted. That made the rest of the decision much easier for me. I had to wait for a bit as her schedule was pretty full, but between my OT and I sending her emails and text messages, I eventually got to meet her.
My psychologist is great, we get along really well but even then, I wasn’t able to divulge all my deep dark secrets and she had to work pretty hard to peel those layers, one at a time. Some of those layers I wasn’t even fully aware of myself. I was probably 16 or 17 months into my recovery post “e” when I turned up to that one session. I was already tired, slow and emotional, slurred staccato speech, but obviously still working so hard to try to hide all of it. We made small talk as per custom and I remember her pointing out that in those short 15 minutes since I had walked into the room, that I had used the word “fail” on quite a few occasions. She proceeded to asking me why I used this term so often. My answer was simple…
”Well that’s because I am failing. I am failing to be patient with the kids, I’m failing to be the fun mom because I’m always too tired, I am failing to remember what I told Greg 5 minutes ago, I’m failing to be able to exercise like I used to, I’m failing to keep up with everyone, I’m failing to manage social events, I’m failing to be back at work in full capacity, I’m failing to talk properly, I’m failing to drive myself places, you name it…I’ll be failing.”
I don’t know who was more shocked of us two. The Pandora box had burst wide open…and so did the tears rolling down my cheeks. She gently handed me a tissue and gave me time to process all that I had just said. Once I got my composure back, she pointed out that the word fail is a strong and harsh word to use and even more when you apply it to yourself in this manner. When used in such a way, it can drain an energy tank really quickly and kick-start the ferris wheel of negativity. She continued by asking if I was honestly thinking that I was failing…to which I replied yes. At the time, it was truly how I was feeling. That sense of failure had been bottled up in my chest for months now and every day for the past year or so I had been adding examples to my mental list of how I had been failing. It didn’t need to be a big thing, if I couldn’t accomplish something or accomplish it to my previous standards, it was proof that I would struggle to succeed again. All those fails, big or small, were proof that I wasn't ok.
She then asked me, how much control I had over some of the things I thought I was failing at. She reminded me that because my brain wasn’t working like before, I now had new sets of challenges to factor in. Hum, she had a point. It would be all good and well to hold myself accountable to some standards if my cognitive and physical abilities had remained the same, but since I had not chosen for my Weird Wonderful Brain to rewire itself, I had to evolve with the situation too. To further her reasoning, she asked me whether I’d expect from a person in a wheelchair to go up the stairs like everyone else. Of course I would never expect them to let go of their wheelchair, suddenly stand up and attempt the climb like everyone else. I know that it would be putting unrealistic expectations on them to even allure to the fact that they should try. She had another point. The difference between a person living with a brain injury and one that has lost the use of their legs is that one has a visible aid that hints others to the fact that they have to accommodate to their unique set of challenges. On the other hand, a brain injury is an invisible form of disability. On the outside, everything looks the same, but it doesn’t mean that there is no need for adjustments. She had yet another point. Then, why am I putting such high expectations on myself? Well, I have always been one to set the bar quite high for myself in all my undertakings so perhaps I simply approached encephalitis and brain injury recovery in the same manner? Old habits die hard indeed, but am I being kind to myself if I simply define myself by how much I can do and not who I am as a person? And there you go, she had another point…again! Brain injury recovery requires a lot of patience, strength and gentle efforts, traits which are part of who I am as a person and on which I had invested a lot of time into since “e”. As a brain injury survivor, I know first hand that, if anything, I work extra hard for every little achievement. I shouldn't feel less worthy because life has to be managed and measured with a new set of rules. I shouldn't feel less worthy because new realistic goals have to be established.
After taking all those points into considerations, I agreed to do my best to avoid to going near the words “fail”, “failing” and “failure”. They are very powerful negative words…just like the super powers that villains hold. Whenever I was to experience that feeling of failure, she encouraged me to ask myself the following question: “How much control do I have in this particular situation?” If my Weird Wonderful Brain has a part to play in my answer, then I’d have to adjust my own expectations. She encouraged me to think of the underlying values that are at the core of everything I do, because they are what define me. She encouraged me to surround myself with people who are compassionate and supportive of my recovery because their outlook is likely to be much more positive than my own. I looked around and she was right, none of those people that cared deeply about me thought that I was weak. On the contrary, they pointed out to my strength of character. Surely they can't be all wrong..perhaps it was about time that I start reminding myself of this more often.
That was one of the most enlightening and life changing session that I had with my psychologist to date. I am so glad to have been tired, vulnerable and to have used the word fail one time too many on that particular day. However, I am mostly pleased that my psychologist picked up on how I was using those words, that she helped crack the Pandora box wide open, empty it and make room for positive change. I got out of the room that day and it felt like a HUGE weight had been lifted from my shoulders. I came back home and looked up several ways in which the word failing was defined on internet. It can pretty much be summed up by “a defect or a fault, a shortcoming or a weakness" and it is a word that is often used to describe someone’s character. It made me further realise that people living with any form of disability are none of these things…in fact they are often some of the strongest and most resilient people that you will ever come across. This motivated me further to try my best to eradicate this word from my vocabulary.
Although I am much better at failing to use the word fail and being much better at falling short of failing these days, every now and again, the thought still makes its way into my Weird Wonderful Brain. That’s when, like today, I remind myself of that particular session with my psychologist. It's a heads up for me to work on adjusting my expectations and on being kinder to myself. I don’t always like to tweak my expectations, but I've also come to realise that it comes in pairs with the encephalitis survivor title. It is a long and treacherous road, but you can also learn a lot from navigating these types of roads.
Are you also experiencing this feeling of failure since your brain injury? If so, how are you overcoming this feeling?