Being diagnosed at the age of 29 with Hydrocephalus, I have a Pre-Me version of myself (in my head), lurking beneath the surface. I say lurking because that person somehow feels surreal to me…like a ghost.
I am definitely not the same person despite what others may think or see when they look at me. They (the ones who knew the old me) make me feel as if I need to be that same person, as if I’m faking it because they struggle to understand how Hydrocephalus has affected me physically. I fight to be that person for them…but it’s a struggle of note. The fact that it’s an invisible illness does not help me in any way and, finding the words to explain it to them, is lacking. Never mind the fact that I’ve had to learn to accept this me, regardless of how I long for who I used to be.
I’ve written before about feeling like a tangled mess and this is true for me on a daily basis, regardless of the setting.
I think being diagnosed later in life as opposed to diagnosis before/at birth probably brings forth more of a challenge. (You can’t struggle against or miss something which you have no idea of).
Because, you simply don’t know any better
At work, especially, I feel like I need to be that same person who lurks at every chance she gets to be the person I used to be. It almost feels as if every day that goes by, I change a little more…I can feel myself slipping away…
Knowing what I used to do, I did not have to work half as hard as I do now to stay ahead or on top of my game. I know that people look at me and think that I’ve got it all under control. But, I know for a fact that I’m half drowning just to keep paddling like a duck.
Physically it’s exhausting…mentally it’s extremely debilitating and most of all, it makes me feel like a fraud…
I can still do the things I used to do but, it takes more effort, thought processing feels like a nightmare and having to think technically (I partly do IT support), feels like I’m a tadpole swimming in the ocean, just trying to survive.
A few years ago, before diagnosis, I done so much more than I do now. (I’m thankful the technical aspects have decreased because I don’t know if I’d be able to do now what I done then). With that said though, I’m grateful for the little I get to do now purely because of the familiarity of a comfort zone I once knew…and miss.
When someone asks me for help with their computer, I pray silently that what I think is the solution to their problem actually is, while remaining poker-faced. Luckily for me, my long term memory is the epitome of me and kicks in when the lurking pre-me makes her appearance. She shines with pride and takes over the reigns but eventually gets lost in the confusion of my mind…
I think (secretly) I truly do miss that old me…the one who knew her stuff no matter what the technical challenge. Even though I didn’t have all the answers all of the time, I managed to wiggle my way through a problem and come out smiling. Walking away confidently and knowing that I feared nothing.
Now, the difference is, I wiggle, squirm and literally feel ill fearing that I won’t find the answer because it takes me that much longer to get there. Unfortunately, the real world does not allow for anyone who gets left behind and because life happens, we need to swim to keep up with the tide. Luckily, I’ve managed to pull it off time and time again. However, this time when I walk away, it’s without confidence, lack of trust in my abilities and fear for the next time.
Also, I walk away more aware of who I was and am no more…
How do you see yourself pre and post diagnosis/treatment? Do you have moments of inadequacy? Have you found ways of dealing with and accepting the after effects of Hydrocephalus and brain surgery?
It sucks…that’s for sure…
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I blog about Hydrocephalus and Selective Mutism to give a voice to the millions of people around the world with this condition and disorder. As much as these experiences are unique to me and my family, I’m sure others have experienced it too. My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!