Hydrocephalus: What if there are stages of Hydro?

Waterfall

For a long time I’ve convinced myself that my Hydrocephalus is a “problem“.

I have had doctors tell me that I don’t have it only to have the next one contradict it with confirmation that I do. Being told things like “You could go into a coma” has been the worst yet. In all honesty, I think I stopped “living” the day my eyes fell on the word Hydrocephalus on my MRI report and I started my frantic search online, to learn everything I possibly could about this condition. A downward spiral into a dark abyss is where I literally found myself…I compare being diagnosed with Hydrocephalus to a premature death sentence.

As much as I’ve read and know, I still feel there’s so much I don’t…Also, the things I already know, I read and re-read too many times to mention. Simply because, I feel a need to understand…understand what this is and understand how I can work it out of my body/life. Almost as if reading about it could wipe its existence out of me or help me fix myself. (I know it won’t). I think the biggest question I’ve been left with: “Is it all in my head?“.

Given this state, I think it’s fair to say Hydrocephalus has consumed me.

It’s not something I’m proud of. In fact, putting it like that makes me feel like I need to change and find my way back to the life I knew before diagnosis. It’s a bit easier said than done…I don’t know what that was…(And I may never get there).

However, here’s what I’m going to attempt. These doctors on my journey, the ones who say “there’s nothing wrong” with me, are the key. Because of what they have said, I’m going to give it the benefit of the doubt and start focusing in on exactly what they have said. I’m going to start living my life as if “nothing is wrong“. You might think this a bit “crazy” and wonder how I could possibly do that. The answer is simple:

I’ve been Floating Faithfully since my ETV, nearly 6 years ago and the 2 years before that, when I was diagnosed and shunted. I’ve managed my triggers with “success” and brought my incidence level down tremendously. I still have my bad days but they are nothing in comparison to what I’ve felt before. Life in general is not perfect, this is something all beings know. Therefore, I accept that my “good” days will not be perfect as they are tainted with a few bad days in between. (As I’m writing this, I’m aware of how nauseous and tired I feel. This could be attributed to just about anything right?)

P.S. This is me, changing my attitude and the way I think.

Maybe the doctor had some method in her madness when I visited the Emergency room. Maybe I “shouldn’t suspect Hydrocephalus at the first instance“. (I wish I could break that way of thinking too).

This has brought me to thinking…what if there are degrees or levels of Hydro? We all have the same condition and experience similar symptoms yet we are all different. So…maybe I’m different to a person who literally has pain every single day of their life due to the pressure in their head. I can’t honestly say that I have this level of discomfort and am thankful because of it. Also, maybe I’m different to the person who has had 100 surgeries (I could not believe that number either but there actually is someone who has had this number of brain surgeries, in fact more). I suppose it’s best understood in terms of the stages in Cancer…stage 1, 2, 3 or 4 or Diabetes…Type 1 or 2…hopefully you get where I’m going with this.

I wonder why it is that no-one classes Hydro the same way…Think about it

Does it mean I count myself lucky or more fortunate than the next person? Well…NO. It does however mean that there is room for me to start living the life I left behind at diagnosis.

I look at my sister-in-law, Bronwyn, a true inspiration to me in the face of being diagnosed with a beast of a condition…Cancer was her diagnosis a few years back. She’s been cleared of it though after intensive treatment. From what I personally witnessed, Cancer did not consume her, though it caused her unbearable physical pain at times…

It doesn’t run her life and she never talks about it. Whether it be her way of masking or dealing with it, that’s another story. She lives her life and makes the most of her time. Looking at her, there’s no evidence that she was ever touched by the disease. You might say that I can’t possibly compare the two but both could cause death and both are serious enough to be taken seriously. Besides that’s not the point of my post.

It’s a known fact that there is no cure for Hydro and so too there’s no known cure for Cancer. However there is treatment for both…Could I safely say I’ve been “treated” for Hydro just as she’s been treated for Cancer?

I want to reach for that level with my condition. I want to say “My hydro has been treated and is under control“…more than that, I want to believe it with all my heart and soul…to embrace life and live.

All publications I’ve read on this condition, does not leave much room for that kind of approach. I wonder if the mind over matter philosophy will work with my approach? If anything, I’d say it’s better than Giving up on myself.

 

 

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