I felt like I should write a post 24 hours before facial reanimation surgery, given that I also wrote one right before brain surgery. Reading that post back, throughout this journey, has been a bittersweet reminder that I rightfully had absolutely no idea what the next few months held. But I also wasn’t prepared for the worst at all. I knew the road ahead would be uncertain. But I also thought I’d be taking “long walks” and that it would be over in a “few months.” Neither were true.
I woke up from brain surgery unable to see, unable to walk, unable to write and unable to do many of the seemingly “little” things. I wasn’t at all taking those long park walks during my recovery, like I thought. Instead, I was trying my hardest to stand upright with assistance for months. Being able to toe tap the bottom stair without holding on - 7 months later! - was a huge achievement. Even at 16 months post-brain surgery, I’m still meeting weekly with a physio to practice balancing activities; namely standing on a cushion and sometimes advancing to shutting my eyes.
After keeping brain surgery secret from so many, I also wrote in that post “it has been very much a double life and a difficult one to keep up at times and if I had to do it again, which could well be a possibility after tomorrow, I would do things differently.” And so I have been a little more open this time, mostly because having a visible difference has been impossible to hide in the same way that having an invisible illness was.
The most shocking part of this whole thing was that I found out I needed a facial nerve graft at a point when I started to really notice the natural improvement (image below). I was sent for an EMG test, which measures the muscle response and nerve activity, thinking it was just to be prepared for the possibility of surgery one day. But instead, the plastic surgeon called me within two days of getting those EMG results, telling me “time is of the essence” as my nerves were dying. I only had two short months to do anything about it so he gave me a date for the face surgery there and then.
What he proposed is to take a nerve and blood vessel from my leg, and attach it through my upper lip, connecting the “good side” with the paralysed nerves in the hope of re-booting them. I’m not usually the type of person to expect the worst in any situation. And because of this, excitement about tomorrow is currently my dominant emotion. But the surgeon has pre-warned me that there’s a chance the surgery may be unsuccessful and nothing will change at all. I know that nothing will be different for at least the first 6 months; I’ll wake up exactly the same and will need to be patient whilst the nerve grows slowly overtime. But given my previous experience, I do also know that I have to level my expectations and not be disheartened if there isn’t a change.
Brain surgery has really taught me to expect the worst but hope for the best, and trust that whatever happens you will get through it. Often when we’re in the middle of a challenge it can be really hard to see a way out or think that we’ll ever get through it. But tough times never last. Daily progress adds up overtime, even though it can sometimes feel frustratingly small in the moment. Better days are always on the way. I also wrote (in 24 Hours Away From Brain Surgery) that I hoped overtime it would all just become “a really random story I tell.” I won’t lie, at 8 months on, whilst still struggling to do certain everyday things, I accepted that this might never actually be the case. But in a way, it is. I’m still recovering from things. But I’m also now only “improving” what I personally feel isn’t as good as before. If you didn’t know I had brain surgery, you wouldn’t at all suspect that my shaky handwriting or occasional wobble if I’m standing for too long, is because of the cerebellum stroke I had. And so I guess I am very near to just calling it all a random story.
I’ve lived with facial paralysis for 16 months. And whilst totally life-changing, I am finally reaching a point in my life where I’m beginning to accept my appearance. In the beginning, my facial paralysis was seen as “temporary” by everyone, even the neurosurgeons, and so I felt fine living with their 6-9 months timeframe. But when I passed that point with no real change, that’s when I suspected it might be more permanent. Experiencing the devastating effects - the judgement, fear and social anxiety - left me questioning whether I would actually be able to live with facial paralysis permanently.
I became aware of how much value we place on appearances in society and how much of our opportunities are a direct reflection on this. It has taken an incredibly long time to get to this point. But when I think about the fact I was socialising in big groups this summer, making genuine new friends, exploring new places in London, going on dates and even starting back at work and seeing colleagues after so long, despite also requiring screen/desk adjustments due to a visual impairment, I realised that life is going on and that I’m finding genuine moments of enjoyment, despite my post-op complications. Nothing has really changed and so because of that, I now feel at peace with the fact that any improvement to the mobility of the right side of my face, that comes as a result of surgery tomorrow, is just a bonus to a “new normal” that I’m already navigating and actually really enjoying.
I’m a bit of a guinea pig for the surgery tomorrow. It hasn’t been done in the UK or Europe before. Gulp. But, I know that it’s all just “surface level tissue” and because it will have no effect on my cognitive ability, it makes this 8 hour surgery a breeze. Brain surgery was without a doubt the most challenging thing I’ve ever had to experience. The post-op complications - some permanent like the oscillopsia and nystagmus - have been incredibly hard to adapt to. But I personally feel incredibly fortunate to have experienced all that so young.
Whilst a massive part of me wanted to live as carefree as some of my friends were, just actually being twenty-something, brain surgery has beyond prepared me for anything else in life. It has taught me that life is not a race, we all go at our own paces and any progress to you, even if small to someone else, is still amazing progress. So again, I have no idea of the outcome tomorrow, or what the next few months are going to look like. I do know that your thoughts alone cannot change your reality. No amount of positive thinking or visualising can actually do that, apparently. But adopting a positive mindset does help you to face challenges with courage, bravery and resilience.