Hydrocephalus: Would they even know what to do?

Hydrocephalus: Would they even know what to do?

Do the people in your life, those closest to you, know what to do if you need help? How knowledgeable are they when it comes to Hydrocephalus and you? Honestly, I have the utmost respect for parents who fight fiercely for their children with Hydrocephalus and are so in tune, you’d swear they’re the ones diagnosed with it. (That’s a post for another day).

It bothers me, thinking about my own family. My parents only ask if I call to tell them what’s going on and even that feels awkward. Only one of my siblings makes the effort to care, know and understand – I love her for it. As for those closer to me, from where I sit, they don’t know enough about Hydro to know the signs or symptoms to react. They’ve seen me go to the Emergency many times and come back with a “clean bill of health”. They’re seemingly living with a false sense of “everything’s OK”. I know better…

But it makes me feel like I’m doomed because they wouldn’t know how to help me. (Most companies or countries have a disaster recovery plan for if and when things go wrong, yet we neglect to formulate one for ourselves. Why is that?). They don’t know the terminology, don’t understand how the condition affects me, are unaware of how I’ve been feeling, when I’m symptomatic or just how important a role they play in being my advocate, when I am unable to do so for myself. Does this scare me?

Hell yes!

Can I do anything about it? (Some may argue that I can by educating them and explaining what I need. I beg to differ. I sound like a broken record and have grown tired of hearing my own voice!).

So, I own it…all of it!

Hydro is mine to deal with but, the load becomes heavier each time I have an episode and get ignored. It becomes harder to convince others of this invisible condition and how it affects me. It becomes harder to mask and put up a fake smile when my head feels like it’s going to explode, and my guts are threatening to leave my body through the hole in my face. It becomes harder to fight to be heard when I feel like my voice is being drowned out by the loud silence of inaction. Yet, it becomes easier to get back up again after each episode because this abusive relationship is forcing me to be stronger and making me immune to it’s scare tactics. Go figure!

My last appointment left me with a plan…sort of. (For what it’s worth, I am grateful to at least have one). However, after 5 calls to the surgeons’ rooms to get the referral to the Neuro Ophthalmologist, I’ve only put one foot in front of the other. He insisted this needed to be done along with a repeat MRI of my head and spine, when I “feel good”. (Define good…). That’s kind of hard to do when getting half of this done requires a piece of paper from him. Long story short, I got there in the end…kind of. Calling the Ophthalmologist’s rooms, I was advised to get the admin staff at the Neurosurgeon’s practice to call instead so they could prioritise my appointment, based on the referral. Done that. Now I wait for someone to call me with a date and time. Or, am I supposed to do that..? Confusing and frustrating!

Movement at a snail’s pace is still movement…with patience being an added skill, perfected over time.

I know what I sound like to those who don’t know my Hydro journey. I understand. A well-meaning individual suggested meditation…

The thing about us as humans is, we tend to think our advice will help the next person without truly understanding their situation. I too make the mistake of doing this. I appreciate all the advice I get though, which is better than nothing and more forthcoming from “strangers”, than closer relations.

But, the level of my frustration has hit the ceiling with so many things. This condition, the fight to be heard, having to start all over, being patient with a surgeon (who I know is busy taking care of other sick patients) and even a husband who didn’t ask how my appointment went last week! Breathe…

I wonder if the people in our lives understand what an integral part they play. For instance, if I were to get sick to the point where I can’t communicate effectively, he wouldn’t even know the name of the doctor that I consulted with. Nor would he know what we had discussed in terms of contacting his rooms to ensure he meets me at the hospital if/when I need attention the most. He also wouldn’t know which hospital to take me to, an important piece of information to ensure I don’t get brushed aside, misdiagnosed or mistreated. (Brain surgery is always highly likely and impossible to ignore). I told him nonetheless…You can hear but still won’t know, especially if you don’t listen

Can I say I blame him? It’s a slippery slope and a sad state of affairs I face each time I allow myself to go there…So I won’t!

This is the point where I decide who I take with me on this journey and who I leave behind because managing the condition is hard enough without the need to worry about anyone else, who isn’t as invested in it all as I have to be. No choice!

It’s so easy for others to tell you to be more positive, to keep the faith and be strong, to live your life and not let any of this get you down. But, have they actually walked in your shoes? Do they know specifically how this all affects you? (A generalised question, referring to anyone who doesn’t have Hydro but also the next person who actually does have it. We all have different coping mechanisms and this condition affects us differently). Always remember, your body, and the way you are affected by this condition, is unique to you. Being dismissive of what you’re feeling is never a good idea, trust me, I’ve done so long enough to know.

If I had to be honest, I’m at a point where I do but also don’t care anymore. Not giving up kind of “don’t care” just, “I’ve had enough and don’t see the point”. Maybe that’s where my release lies. A way to stop focussing on the unimportant and putting myself first as a priority. Oh well, I can only but try!


  • Richard Fry

    March 12, 2020 at 11:12 am Reply

    Thankfully, Kathy, my wife, a nurse, knew what she wss getting into when she married me.
    My mother dealt with this since my birth, and over the early difficulties of my diagnosi at the age of five, and subsequent surgeries!
    Our daughter is helping me with somethings when I’m having difficulty, but our son, has some issues of his own that he’s been dealing with, and might not be able to cope with it rigjt now!

    • Skyewaters

      March 12, 2020 at 8:16 pm Reply

      Thanks for sharing Richard💙

  • Peter

    March 9, 2020 at 2:40 am Reply

    I have had hydrocephalus since birth. A total of 9 surgeries so far. At 51 years old I feel like it’s being bothersome to everyone to complain about symptoms. No one takes it seriously. It’s just another waste of time and money to get it checked out, and they just send me home with a doctor’s excuse to be off of work for a couple days. And the usual prescription for pain medication. I don’t know what to do about it anymore.

    • Skyewaters

      March 9, 2020 at 8:40 am Reply

      I can fully understand how and why you feel the way you do. I don’t have the right answer for you because that’s something you have to decide for yourself. I too sway between doing something and doing nothing. It’s tiring, it breaks your spirit and makes you feel like a burden.
      When I feel strong enough, I push on and keep looking for the one doctor who will listen. Then there are times where I just think, “Why am I doing this?”.
      It’s not easy. Hang in there.💙

  • Philip Mastromonico

    March 7, 2020 at 7:57 pm Reply

    Again, the ever present plague of an invisible condition. Though my only protector, my sister, is an RN, she won’t act until I am unconscious but, I can’t hold this against her. The same goes for all medical professionals I have ever encountered.

    • Skyewaters

      March 8, 2020 at 5:39 am Reply

      A reality which needs to be highlighted even if only to give a voice to those of us who have to live this way.
      Thanks for your comment💙

  • Busa Wheels

    March 7, 2020 at 7:48 am Reply

    Check out Valhalla dogkennels in new Plymouth. That is the new me and new life. Never felt soo happy in my life and most conditions i have is getting better. Go vigure. Kind regards Marius Venter NZ.

    • Skyewaters

      March 7, 2020 at 1:50 pm Reply

      So nice to hear from you! It looks and sounds like a good change. I only wish you the best with this new venture🐾

  • Jennifer Lane

    March 6, 2020 at 3:54 pm Reply

    WOW!!!! Are you sure that you aren’t my twin;)?

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