The Brain Takes Years to Fully Heal. You’ve Got Time.

Trigger warning.

Two months ago I was really struggling to hold on. My physical symptoms - the eye spinning and fact I see two of everything - just got too much. I couldn’t see how I was possibly going to live with these life changes forever, after struggling so much just in that week. The symptoms have been daily since my brain surgery and cerebellar stroke in 2019 but as more time passes, and they remain largely unchanged, somewhat worse currently, I’ve been dealing with the reality that they could be permanent adaptations. 

The minute you tell health professionals, doctors or even friends that you’re feeling that way, alarm bells ring. But I felt completely fine in myself otherwise. I was happy in every other area, largely quite positive and doing the things I loved most. I just felt like I was banging my head against a brick wall whenever I sought remedies or advice. No one understands the severity because it’s invisible and two years of constant appointments, researching and trialing things frustratedly reminded me of that.

Of course, doctors categorised the way I was feeling as depression and prescribed medication to fix it. But to me, that was ridiculous when I knew the route cause. I wasn’t struggling to get out of bed in the mornings. I didn’t feel I had no purpose in life as I’ve always loved building BITB and have remained busy growing it and blissfully helping others. Since April, I’ve also taken to daily exercise and felt my motivation and energy was better than ever. I fired back that I didn’t need medication, I just needed medical miracles. I knew exactly why I was feeling the way I was. I wasn’t low without an explanation. I could explain that this feeling of hopelessness had only worsened the minute my eyes worsened, and so fix that and this feeling would also be cured.

But that didn’t negate from the fact I set myself a timeframe. To get through the upcoming appointments and just hear what other professionals said, knowing deep down it wouldn’t be the outcome I wanted anyway, and therefore confidently deciding I couldn’t, and wouldn’t, live with it. And that’s when the doctors willed me to at least take a bit of time out from work, go to talk therapy and just focus on doing things I really love until I felt stronger.

I agreed and started talk therapy for the first time in two years. I’m usually so strong and naturally positive, instantly seeing the good in every crisis, challenge or situation, a skill I don’t really know when or where I learnt but have been so grateful for in the past few years. I’ve always felt so fine in myself that I didn’t even realise how much I really needed an unbiased ear until I started receiving it. In the meantime, I also saw a specialist neurosurgeon; an appointment in which all my future hopes had been riding on.

I walked into his office wearing prism glasses. I’ve not needed them since my strabismus surgery in March 2020, but my vision slowly became double again at the start of this year, for a reason that’s still unknown. Even getting down the street had been difficult without them and had me bumping into people and lamp posts. I sought an aid immediately but after a few hours in the surgeons room, after waiting months to see him for his rare oscillopsia (the world spinning) expertise, he told me something that weirdly restored all hope and faith.

“Don’t wear any prisms. Or glasses of any kind. It’s not your eyes that are the problem, it’s your brain, and your brain will eventually learn to adapt. When this will happen is unknown, but you lose nothing by trying for the next few years. Whether or not the double vision or spinning will actually improve won’t even matter. To you, your brain will have learnt to ignore it and so your symptoms should naturally subside.”

Ok, I thought. “But you want me to completely walk out of here, with no glasses? Through that door over there? When there’s two of them and I can’t be sure until I get closer which is the ‘correct’ one?”

Yep, wear nothing, he told me. “I’ll call you back next year to do more tests.”

So that was that. Simple. Since that day - 18 days 22hours 58 minutes and 27 seconds ago as I’m writing this (not that I’m counting) - I’ve had no aids. I don’t doubt that my dark thoughts and emotions have just been from a build up of suppressed trauma, surgeries, change, adaptation and equally dramatic family matters that have surrounded it all. But I do know now that talk therapy, good friends, lots of laughter and actually continuing to go out and do things have greatly improved my ability to cope, and will continue to aid my recovery from it all.

As soon as my eyes started worsening a few months back so did my confidence. I really struggled to even leave the house or walk down the street. To others, they only see my face. And when they see my smile starting to return, as it amazingly now is, they beam with genuine joy for me but also remark that it will soon all be over. I’ve given up saying anything in response to that and instead just quietly observe how I wish with all my heart I only had my smile to worry about. I really wish I could join them and also excitedly look forward to it soon becoming a distant memory. If only that was really the case.

I know that it’s not. For the rest of my life I will live with a visual impairment. There will be days when I feel so dizzy and drunk that I struggle to walk down the street. But after tests in the surgeons’ office I also know that it’s mostly an internal feeling, as his checks confirmed that I was walking fine despite feeling as though I was stumbling. It’s all invisible to others and that makes it far more challenging, given that I do look and seem so well.

I might be smiling on a photo but feeling inside as though I’ve had far too many drinks and need to call it a night; that feeling you get when you step into fresh air and the world around you starts spinning. I can’t sleep this off. I won’t wake up tomorrow and know better than to put myself in that situation again. Instead I’ll open my eyes, glance at my pictures on the wall as I always do first thing, immediately clock their ferocious, lopsided, jumping around and dig deep for the strength to navigate the day ahead.

What makes it different now, to the previous few months of sheer overwhelm and genuine fear at how I would possibly live with this feeling and visual defect F-O-R-E-V-E-R, knowing I already just find those first few seconds of the day incredibly disabling, is hearing that the brain will take time to heal. I’m reaching two years post-brain surgery next week and still have a long way to go, resulting in my faith temporarily wavering and the assumption that this right now is the maximum recovery I’m ever going to get. It’s not.

Regardless of whether or not there is a physical improvement, I was reminded not to lose hope just yet. Adapting is a journey. But one that’s possible. “The brain takes years to fully heal. You’ve got time.”

1 comment

  • You write so beautifully Sam! Thank you again for being so honest and sharing your journey xx

    Abbey

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