Feels like I’m fading away…

Feels like I’m fading away…

How do you come back from brain surgery that leaves you feeling like you’re slipping away? Like you’re stuck in a body that simply won’t physically move, yet somehow, deep inside of you, there’s a part dying to escape the torture chamber!

It’s not the life I’m used to. It’s not the life I want. I need things to go back to a time where I felt more in control. A time where I could make sense of my situation.

I’ve only had 6 brain surgeries but the last one left me in a bad way. I know I’ve said this before. BUT, I would like to think things will improve. This coming May, it’ll be one year since then. However, I’m starting to think this is my new “normal”. I cannot change it. No amount of effort I’ve put in has helped, not even in a small way.

Some days it feels like I’m on the outside, looking in…

It feels like life has just become harder and my brain has shrunk to the size of a pea. Thrown around like a rag doll in a storm. I feel stuck with my thoughts. I struggle to process and organise them in my head…I am drained: physically, emotionally and spiritually. I have become disconnected in so many ways…

My fears in this moment:

  • Is this what my life will be like now?
  • Does it change or get better in time?
  • What happens after the next surgery?
  • Does it get worse after each one?

I cannot guarantee I won’t have any more brain surgery. I have been through enough with this condition to know, taking it for granted or becoming complacent, is just not an option. Having less fear and more faith, eludes me right now. I feel battered and abused, for lack of a better explanation.

A comment someone made not too long ago has resonated with me: “When facing brain surgery, I’m often left wondering, what deficit will I be left with next?” This is not a comforting thought in any way, shape or form!

If anyone has felt the way I described above after brain surgery, and subsequently had further surgery, yet returned to self…please let me know.

I now know it can always get worse but does it get better?


  • Don Clough

    April 4, 2022 at 1:14 am Reply

    I have felt the same way, especially since my doc told me that my skull is thin, and he expressed some doubt as to if another brain surgery would be possible, given that I have a thin skull.

    • Skyewaters

      April 4, 2022 at 1:54 am Reply

      I can only imagine that would leave you in a sticky situation. Praying you don’t need further surgery🙏🏼

  • Meredith Troutman-Jordan

    April 1, 2022 at 2:04 pm Reply

    I remember that feeling from four years ago, after three surgeries within a 4-week period, and not knowing how or where I was or how I got there (ICU). I watched t.v. shows 4-5 times without realizing it. I know exactly what you mean about being trapped; it was like I was stuck inside a body moving through quicksand, but I wanted to move so much faster. It was frustrating, and I realized if I were someone else I would be frustrated with me. It was a lesson in patience, starting with walking to the mailbox. I remember being short of breath. Progress is possible, however. We do not, and cannot give up.

    • Skyewaters

      April 1, 2022 at 9:44 pm Reply

      Thank you Meredith. Your comment validates 100% of what I’m thinking and feeling. 💙

      • Anonymous

        April 2, 2022 at 2:07 am Reply

        It was a scary and frustrating time and alot of it I don’t remember still, but I pushed myself, starting with walking to that mailbox. I wrote every single thing down and the things that seemed too unimportant to write down, which I later could not remember, I learned to laugh about. My aggravation pushed me. I wrote and wrote. Neuroplasticity is a blessing and our brains can be trained. I was too stubborn for physical therapy, but I pushed past it. Now I am in better physical and cognitive shape than ever. Keep writing and keep stimulating your brain!!!

Make yourself heard and contribute to the conversation

This site uses Akismet to reduce spam. Learn how your comment data is processed.