Hydrocephalus…It’s not OK!

A diagnosis of Hydrocephalus, caused through no fault of my own, is something I can live with. I’ve had to learn so much in order to cope and, more importantly, accept this new way of life. It’s a constant learning curve!

I don’t exactly have a choice. None of us do…

You question. You cry. You get angry. You feel depressed. You live in limbo. You’re positive. You’re negative. You have moments of sadness but also joy. You become complacent. Your anxiety levels ebb and flow…

Whatever your reaction is, it’s yours to have.

I’ve gone through all of these emotions but a few weeks ago, I struggled to get back to my “norm”, whatever that is. I know I have one…sort of!

I’ve since realised, there are so many things that’s just NOT OK with this condition. My fight thus far, the obstacles I’ve had to overcome (and still continue to face), my struggles are all not unique to me, I know this.

Too many of us go through the same…and worse. That’s NOT OK…

It’s NOT OK for medical staff:

• To be dismissive of our symptoms and, in some instances, expect us to just get over it.
• To let patients, feel like they’re not being heard.
• To cause patients to feel like they’re a burden or nuisance.
• To make you feel like it’s all in your head and incorrectly diagnose us as being depressed.
• To follow the principle of Do no harm when inaction will yield exactly the same result.
• To play ping pong with us between Neurosurgeon and Neurologist because we are “complex”.
• To be incompetent and clueless about this invisible, yet all too common, condition. (I wish they could have the view I have of just how widespread this is).

Does the fact that this condition is invisible, warrant some of the treatment above?

I think not!

As a patient, how many times should you forgive and forget the inept care you receive, because of their lack of knowledge? Debatable…

How does that help when you don’t get the care you need, when you seek it, ESPECIALLY when time to act, is a major factor?

It’s NOT OK for those around us (Some are closer than others):

• To expect our demeanour to be positive and smiling when inside our soul is struggling under the weight of this condition.
• To make us feel like our life is not worth it and that the bad hand life dealt us, is something to just “suck up”.
• To mourn the loss of us once we’re gone because the time to show you care, is now!

The challenges are real. The pain is unbearable at times, regardless of whether or not those around you can see it.

It’s NOT OK for us:

• To live with pain and fear because, quite simply and honestly, WE understand this is an incurable condition. WE know the potential it has to kill us. (Not that easy to live with this knowledge).
• It’s NOT OK to repeatedly endure brain surgery as the only treatment option because Shunts and ETVs CAN and DO fail, at any time.

IT’S. NOT. OK!

Lately, I’ve been seeing so many posts of parents holding the hand of, or cradling, their lifeless child (some only a few days, weeks or months old), or kissing them goodbye for one last time. Hydrocephalus being the cause of their loss. Or parents who are unable to afford medication or ointment for their child who has developed an infected bedsore on their head, because they aren’t able to move. A factor which prohibits them from having the surgery they need to reduce the swelling of their head. (In most cases, the lack of money plays such a big part in all of this). It breaks my heart…

If any of this is OK, does that equate to the same stance when, and if, I decide death over life?

This condition is a conundrum of note and no easy one to live with or much less treat effectively. I’m not completely against all doctors. If I were, would I keep going back?

If I had to be honest, I don’t envy them any more than I do myself or anyone else diagnosed with this condition. It’s not easy treating something you literally cannot see. It’s not easy deciding if what your textbook and research material tell you is more valid than the person in front of you, presenting with symptoms outside of the norm.

What is that anyway? The “norm”, in the grand scheme of Hydrocephalus…?

Even if I’m not as badly affected as most others, it doesn’t mean that I don’t see, acknowledge or empathise with their pain or struggles. Most of all, it doesn’t mean that I don’t live with some degree of “that could happen to me…”. I don’t necessarily think it’s the same as living your life in constant fear of something bad happening. However, it’s being mindful of the reality which others are oblivious to and knowing there’s not a damn thing you can do about it.

FACT!

No one else is going to fight for this life of yours. No one else is going to give as much as you do. Shine the spotlight on the world of Hydrocephalus and give a voice to those who need it the most.

Start by saying: It’s NOT OK! (#ItsNotOK)