Gaining insight

Gaining insight

For a long time, since diagnosis, I’ve known that my Hydro journey would be my own. It’s crazy but despite knowing this, I can’t help feeling a sense of abandonment by the people who say they love/care about me.

Is it wrong for me to feel as if this VERY BIG THING in my life should be just as BIG to those around me? Some time back I posted this, asking the question who will take of me when I can’t?.  Even though the answer to this appears to be a resounding “no one“, I can’t help but still be hopeful nonetheless (with the hope placed on my kids).

Life really does suck sometimes. We go along everyday so absorbed in our own world and never once looking up to notice what’s going on around us. Much like what happens in today’s society where we are all looking down and focusing on the devices in our hands. We are UN-involved and uninterested majority of the time…I say this because, in all honesty, I too am guilty of this but I TRY HARD NOT TO BE.

I sent out a survey a few weeks back, to a few friends and family to find out just how much they actually know about my Hydrocephalus. Some sent back their responses which I greatly appreciated, simply because of the insight it gave me. Some said they would send it back and get around to doing it…but still haven’t.

One or two said they didn’t feel comfortable doing it because they didn’t feel as if they knew enough to answer the questions. This is fair enough and offers me some further insight. Others…well they simply didn’t respond, which is also OK especially since it was voluntary.

I emigrated from my home country just over 4 years ago and therefore don’t live close enough to my family for face-to-face contact. To give you some perspective, I e-mailed the survey to:

My brother to answer as well as share with my parents to fill in, my sisters (I have two), my brother and sisters-in-law, aunt, cousin, friends and colleagues (ex and current).  My two boys said, without hesitation, they’d answer my questions and eagerly done so last night.  In my opinion, they were too young to understand at the time what was happening but I am curious to read what they have to say. I even asked my husband whom I know hates paperwork and wasn’t in the least surprised at his reluctance to answer it. (He still hasn’t but I’m working on it 🙂)

Am I disappointed about some of the non-responses? To a degree…yes I am. What can I do about it?

Well, if nothing else, I see an opportunity to educate those closest to me. A way to open up and share my journey with them as I never have before.  The beauty about it is that they get to ask me a very important question AND I get the chance to answer it honestly.

I even completed the questionnaire from my own point of view to compare how close (or off the mark) our responses are.

This is why, over the next couple of posts, I will be going through the responses from those who took the time to answer my questionnaire. I’ll also include my responses to them where applicable.

My hope (as with all my posts), is that someone else will find value in it and gain some insight. Feel free to copy the questions and use them for your own understanding if you like. Or, use as a baseline to formulate your own.
These are the questions I asked:

  • What is your relationship with me?
  • Do you know what condition I have?
  • What is your understanding of this condition?
  • Do you know the signs and symptoms to be aware of when something is wrong?
  • On a scale of 1 to 10, with 1 being poor and 10 being excellent. How would you rate yourself in terms of being supportive when I’m feeling ill?
  • What was your initial reaction when you found out I have this condition?
  • How did you feel when you heard I needed surgery?
  • Do you think I’ve changed since my diagnosis? If so, in what ways?
  • Have you noticed any significant changes in my performance?
  • What were your thoughts, fears or concerns when I had my second or subsequent surgeries? (If any).
  • Do you feel that (at any time), you changed towards me?  If so, how and why?
  • What frustrates you most about me having this condition?
  • Do you have any questions for me?
  • If you could say one thing to me, what would it be?

Join me for my next post and let’s see if we can gain some insight together.

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4 Comments

  • minionmayhem514

    March 12, 2016 at 3:48 pm Reply

    I think a big problem is that hydro is one of those “invisible” illnesses and can easily be brushed away as “just a headache” or “just a migraine” when in fact, it is a series of symptoms that stem from a cause that can’t be fixed with Tylenol and a nap.

    Based on my own experience with my daughter, People don’t want to think that the headache you mentioned is really a sign of shunt failure that will probably land you in the hospital for another brain surgery. People don’t know what to say or how to react. When you say, “I have hydrocephalus” to someone, they might run and google it, not knowing what it is. They will see pictures of kids in third world countries with massive skulls because they don’t have the medical facilities to perform ETVs or shunt surgeries. They see those kids and wonder, is that what she’s going to look like? Does she have brain damage?

    I guess what I’m trying to say is that many people just don’t know what hydro is, and maybe this survey will help those closest to you to better help you when you need it.

    • skyewaters

      March 12, 2016 at 7:37 pm Reply

      You are so right.
      The way I see it is if each person/family affected by Hydro educates those closest to and around them, then it might help close the gap a bit. There are so many millions around the world with this condition and it needs to be made more visible. Who better than those living with it on a daily basis to do that? I understand not everyone can be as open and honest about it or want to talk about it and that’s OK. The key is to at least try by casting the first stone and causing a ripple effect.
      Thanks for commenting.

  • Lynn

    March 12, 2016 at 8:33 am Reply

    I can see where you are coming from. However some people are just scared and reluctant to be honest in how they feel about a loved ones illness.

    Trying to be the strong one in supporting them can be very difficult at times. My son was diagnosed 2 years ago with intracranial hypertension/hydrocephalus due to cerabral thrombosis and has had 6 surgeries up to now and is well at the moment. He is 23 and it has changed his life in that he lives it to the full when he is well. But then boy does he suffer when not well. As parents it is a constant worry every time he has a headache (which is most days) as to whether the shunt has failed sgain and I worry about the future when wexare not around to oush medics ehen he is unwell. I have found we have to be assertive eith doctors abd surgeons and demand he is sorted when unwell as anyone with these conditions are the experts themselves at recognising symptoms. He has started to be more assertive himself now when needing treatment which is very difficult when not well.

    Being on this site really helps me to understand that he and us are not alone and it helping to others to help each other.

    Good luck with the surgery

    • skyewaters

      March 12, 2016 at 10:04 am Reply

      I know it’s a very touchy subject for most and I get that. I suppose being the one who has this condition, I just don’t want to feel so lonely and need to know that it’s OK to not be strong all the time. I WANT AND NEED to know how others around me are feeling. I don’t completely understand why but I do feel that I will gain strength from it.
      I wish we didn’t have to fight to be taken seriously because having a condition like Hydrocephalus is bad enough as it is.

      I know exactly what you mean about paying for enjoying the good days. I honestly can’t remember the last time I actually allowed myself to enjoy life as I used to, before diagnosis and acceptance of the seriousness of the condition.

      Well done to your son for finding his voice and standing up for himself when he can. It’s a battle I know but that’s why it’s so important to me to have those around me know what to do and look out for.

      Good luck with your son and Thank you for commenting Lynn.

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