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 every day 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 of 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.