Gaining insight from the “outer” family circle

Gaining insight from the “outer” family circle

Family…the units we are born into, without any choice.  From the time we are born, these people teach us about love and life in general.  They are the ones who build our foundation and help us plant our roots.  Some we love, some not so much…it really doesn’t matter because the blood coursing through our veins is what joins us forever.

A very good friend of mine once recommended I read a book called The 5 Love Languages.  Even though this book is more for relationship counselling, it gave me insight into what my love language is in any given relationship.  For me personally, it’s a combination of Acts of Service and Words of Affirmation.  In fact, truth be told, I find myself naturally doing this more and more for the people around me and simply because it ties in with the saying “treat others as you would like to be treated”.

I think there’s a thin line between members of our family actually LOVING us and the language they use to interact with us, which can become a bit distorted at times.  From what I have gained out of the rest of the post to follow, I have to emphasize this.  I DO NOT DOUBT THAT MY FAMILY LOVE ME, they’re just using the wrong love language.

This is the feedback I received from two members of my “outer” family circle:

My Aunt Annette (married to my father’s baby brother)

  1. What is your relationship with me?
    • My niece by marriage
  2. Do you know what condition I have?
    • Not really.
  3. What is your understanding of this condition?
    • None at all
  4. Do you know the signs and symptoms to be aware of when something is wrong?
    • No
  5. 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 (in any way possible) when I’m feeling ill?
    • Sorry, I have never seen you ill.
  6. What was your initial reaction when you found out I have this condition?
    • Shocked, and sad and wondered how are you coping.
  7. How did you feel when you heard I needed surgery?
    • Not good at all and not knowing what the outcome will be.
  8. Do you think I’ve changed since my diagnosis? If so, in what way/s?
    • I do not know, cause you so far away with little contact.
  9. Have you noticed any significant changes in my performance?
    • No
  10. What were your thoughts, fears or concerns when I had my second or subsequent surgeries? (If any)
    • Prayed that the op will be successful and you will be back to your normal self again, cause I do not know what the outcome of the op was.
  11. Do you feel that (at any time), you changed towards me?  If so, how and why?
    • No.
  12. What frustrates you most about me having this condition?
    • I would not know cause I do not know how you react when you feel sick.
  13. Do you have any questions for me?
    • Yes, have the ops helped you in any way and do you think you will have any more ops?
  14.  If you could say one thing to me, what would it be?
    • Jehovah willing, I pray that you feeling much better now and we are promised that sickness, pain and death will be a thing of the past soon – please read Isaiah 33:v24 and Rev 21; 3 & 4. And read with an open mind

What have I gained from this feedback?

My Aunt lives in a city about 8-10 hours drive away, the same city as the rest of my family (Mum, Dad, Brother and Sisters).  I can understand much of what she has said in terms of not having any knowledge and since we lived so far apart.  I found it interesting that she said “Shocked, and sad and wondered how are you coping.

How often don’t we get a thought in our head about someone who is sick or going through a tough time and even think out loud “I wonder how so-and-so is doing?” But, we never actually follow through on the thought and find out…

My answer (in a nutshell) to her question was this :

The condition I have, Hydrocephalus, is a chronic incurable condition.  The only treatment for it is the OPs I’ve had:
  • by either a shunt being placed into the brain to re-direct the excess fluid (this has been removed and was my first OP) or
  • a hole drilled into my third ventricle, called an ETV, for the fluid to bypass (my last OP).
Unfortunately, neither one of these are permanent solutions and could lead to further operations in the future.  The shunt can become blocked or you could develop an infection which will require further surgery to replace the shunt.  The ETV can close up over a period of time and therefore either will be re-done or a shunt will need to be implanted again.  
Unfortunately, as I said, there is no cure and I would love to say the OPs helped but that’s not the case.  For now, I have my faith and I manage the condition as best as I can making changes and limiting my triggers.  I have an appointment next Wednesday, 30th with a surgeon to discuss some issues I’ve been having.  
I hope that makes sense, if not let me know and if you have any other questions, feel free to ask.  Prayers are always welcome too 🙂


My second-eldest sister, Glynnis

  1. What is your relationship with me?
    • You are my younger sister.
  2. Do you know what condition I have?
    • Now I do because you explained it to me.
  3. What is your understanding of this condition?
    • When the fluid on your brain is not regulated properly it affects you in ways that you don’t remember anything. You blank / zone out.
  4. Do you know the signs and symptoms to be aware of when something is wrong?
    • NO
  5. 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 (in any way possible) when I’m feeling ill?
    • Not living with you makes it difficult to answer this question. But should I live with you I will support you 100%. 10 is my rating.Out of everyone in my life, I do believe this to be true. As my sister, you have always shown compassion and concern for my well-being.
  6. What was your initial reaction when you found out I have this condition?
    • Sad and hurt. Couldn’t understand that an intelligent person like you can have this.This is something which I feel I NEED to comment on. Hydrocephalus does not discriminate. It can touch anyone, from any walk of life and there are no barrier lines. I am not immune and in no way more special than the next person.Accepting this condition as part of me, has been the one thing I have HAD to do. It defines who I am now and I think, in it, I have found my purpose too. I don’t question why me, but why NOT me?If I can make a change in the Hydro world, then I’ll die a happy woman. In saying that though, I do bargain with God on a daily basis and purely because my kids still need me. I accept death when it comes no matter what because I know in the end, it’s not up to me.
  7. How did you feel when you heard I needed surgery?
    • Very scared. I was ignorant about your condition at the time and had so many questions about your well being afterward.
  8. Do you think I’ve changed since my diagnosis? If so, in what way/s?
    • Yes. In a direct way. You call a spade a spade. You have become fearless!
  9. Have you noticed any significant changes in my performance?
    • You are self-driven. Being focused on your goals motivates you to be “hands on.” And you don’t waste time.
  10. What were your thoughts, fears or concerns when I had my second or subsequent surgeries? (If any)
    • You were pregnant at the time and my fear was that you or the baby can die. But thank God you both survived the operation.
  11. Do you feel that (at any time), you changed towards me? If so, how and why?
    • This didn’t happen overnight but I started to feel distant from you since we stopped sharing our intimate moments with each other. It could be that I am not fully aware of your condition that it disabled me to be honest with you.
  12. What frustrates you most about me having this condition?
    • Oh boy when you : SHUT DOWN. You focus on what must be done and everyone must wait. It can be a good thing but at times I need to know if my sister is okay.

Being raised by my grandparents, everything else aside, I had to learn to fend for myself. I was my protection, in the palm of God’s hand, and that spelt out how my life HAD to be. I know my personality but in hindsight, I’d say it was the circumstances which moulded me into who I am today.

  1. Do you have any questions for me?
    • How do you feel…Is all of this overwhelming for you?

It does become overwhelming at times (when I actually allow myself to think about it). Life is busy and sometimes it feels like that’s not a good thing but it helps keep my mind occupied so I don’t dwell on it too much. I don’t like self-pity so only when I am all by myself, I break down and deal with it at the time, allowing the emotions of it all to take over. I sometimes can’t believe that I’ve been through this or have Hydrocephalus, to begin with. I do tend to forget that I do especially when I feel “fine”. It’s not easy but I get through it as best I can.

  1. If you could say one thing to me, what would it be?
    • I am so proud of you whether you have or not have this condition. You are a true inspiration to many of us. And this is a fact. I love you, my beautiful sister.

What have I gained from this feedback?

My sister’s responses conjured up a lump in my throat.

It gave me insight into taking a deeper look at myself especially after the last post from my colleague and friend, Laureen. I did not have an easy life growing up (my next book to be published – watch this space) and developing Hydrocephalus later on in my life just feels like the ultimate cherry on this cake. I don’t do self-pity, as I said before.  I have my moments of weakness and break down but I grow stronger after that. It’s like metamorphosis though, each time feels more painful than the last especially since you’d expect it to get easier after the last time I visited this low-level place.

To give you some perspective on my upbringing…I wasn’t raised by my parents but by my grandparents in a different city about 8-10 hours drive away. There were many times when I felt like an orphan and more as if they don’t care about me. Being older though and having a family of my own, I can understand that my parents didn’t have it easy and did the best they could under the circumstances. Let’s face it, parenting combined with life = damn hard…most times. I don’t hold it against them. However, I do have strong moments when I literally feel like I was “out of sight, out of mind“.

I feel almost justified in saying that, especially since I was hoping to get a response to this questionnaire from each one of my family members (Mother, father, brother and older sister). That obviously did not happen and I feel a tad disappointed, to say the least. My older sister sent her apologies for not completing the questionnaire and honestly said she did not know enough to answer it adequately. This is fair enough.  However, if it were me, I would have made the effort at that point to find out more. It’s easy to feel as if they don’t care because their non-response warrants it. However, it is still their choice. This is a light bulb moment for me…Not everyone in your life, no matter how close they are to you or tied by blood, will have what it takes to deal with this condition. I can only deal with my own feelings and what I assume is the reason for them not responding.

As far as I’m concerned in any situation such as this, it’s the other person’s loss and I should just move on from it. I tried…supplied the opportunity and the saying comes to mind “You can take a horse to water but you can’t make it drink“. And, as someone else added to that phrase “But, I know how to hold its head down“. I don’t like this approach either…I will NOT force my condition on my family. They each have a choice to ask me any number of questions or comment on just about anything…They even have the fullest right just to show compassion and ask “How are you doing?“. As I said before, I don’t doubt that they love me as I’m sure they do but…

This would be the part in my first post where I said: “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?

What this little exercise is teaching me is that it’s not the blood that courses through your veins that will determine the amount of care or empathy you receive. As can be seen in my gaining insight from colleagues post.

Family is not about blood.  It’s about who is willing to hold your hand when you need it the most

Be thankful for the people who do show you the least bit of care. For me, it’s the concern that comes at a pivotal moment where I’m feeling so down and ready to give up that matters most.

Watch out for my next post where I share the responses from my sons

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