Hydrocephalus: 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 one’s 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 counseling, 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 Isaiah33:v24 and Rev 21; 3 & 4. And read with a open mind

What have I gained from this feedback?

My Aunt lives in a city about 8-10 hours drive away, 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:
  • 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 molded 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 on Smashwords – 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 am “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

 

Thank you for taking the time to read.

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Hydrocephalus: Gaining insight from my children

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In the final post on Gaining Insight, I’ve decided to post the responses I got from my children.  I have 3, 2 boys and 1 girl aged 6.  She is too young to understand all of this and yet, she played an important part in the last 3 operations I had.  I was 5.5 months pregnant with her at the time and underwent 3 operations over a 3 day period.  You can read all about it here.

My boys have very kindly agreed to be part of this blog segment.

Each of my boys are so different in their personalities. Jamie…so much like his Dad, doesn’t show emotion easily and prefers not to dwell on negative emotions. He prefers to think of me as being “fine” and would rather I not wallow in negativity. He will attempt to see the positive in a situation and eagerly points it out to me. (I suppose it’s his way of trying to make me feel better).

Gabriel on the other hand…this boy takes after my soul in so many ways. Very attentive, kind and displays such loving care especially when I am unwell. There are times when I will be feeling ill and trying to mask it.  I’ll notice him looking at me intently, observing and without prodding, he will inquire about how I’m feeling, if there’s anything he can do to help or even just offer to make me a cup of tea. It’s something which comes naturally to him and makes me proud. He definitely speaks my love language in so many ways…

Both my boys were rather young at the time of my diagnosis and when I had my operations. From the responses, I can see that they attempted to answer, especially Gabriel, with their current mentality. I could almost feel him immerse himself into the situation as if it were unfolding at present.

This is what they had to say:

Jamie-Ethan – Age 14 (Age at diagnosis and first OP – 5, Age at OPs 2,3&4 – 7)

  1. What is your relationship with me?
    • Son
  2. Do you know what condition I have?
    • Hydrochephales
  3. What is your understanding of this condition?
    • Something about a fluid in the brain
  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?
    • 7
  6. What was your initial reaction when you found out I have this condition?
    • I didn’t know what it was but now I have a better understanding, but still not sure.
  7. How did you feel when you heard I needed surgery?
    • I was very young at the time and can’t really give an answer.
  8. Do you think I’ve changed since my diagnosis? If so, in what way/s?
    • Not sure
  9. Have you noticed any significant changes in my performance?
    • A little
  10. What were your thoughts, fears or concerns when I had my second or subsequent surgeries? (If any)
    • Not sure
  11. Do you feel that (at any time), you changed towards me? If so, how and why?
    • Not sure
  12. What frustrates you most about me having this condition?
    • Your memory frustrates me the most…not remembering things.
  13. Do you have any questions for me?
    • No
  14. If you could say one thing to me, what would it be?
    • Try to live your life and enjoy each day. No matter what happens, we’ll deal with it as it comes. If you need another OP and let’s say you don’t make it, then at least you know you fought and gave it your all. I’ll know that too…it won’t be your fault. Just try to enjoy the time you do have and the time we spend together.

How grown up is that?!

Gabriel – Age 12 (Age at diagnosis and first OP – 3, Age at OPs 2,3&4 – 5)

  1. What is your relationship with me?
    • You are my mother.
  2. Do you know what condition I have?
    • You have Hydrocephulas. 
  3. What is your understanding of this condition?
    • I know that sometimes you can’t organize things and you get lots of headaches.
  4. Do you know the signs and symptoms to be aware of when something is wrong?
    • Whenever you come home and you don’t look like you feel that well. 
  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?
    • I’d give myself a 9 because I always ask if there’s any way I can help.
  6. What was your initial reaction when you found out I have this condition?
    • I felt really bad for you because then I realized why you had some struggles.
  7. How did you feel when you heard I needed surgery?
    • I felt like your hydrocephulas was getting worse and I felt concerned. 
  8. Do you think I’ve changed since my diagnosis? If so, in what way/s?
    • I’m not sure. 
  9. Have you noticed any significant changes in my performance?
    • I haven’t noticed any changes 
  10. What were your thoughts, fears or concerns when I had my second or subsequent surgeries? (If any)
    • I was worried that you might’ve gotten hurt.
  11. Do you feel that (at any time), you changed towards me? If so, how and why?
    • I don’t feel that I’ve changed towards you.
  12. What frustrates you most about me having this condition?
    • That it causes you a lot of stress.
  13. Do you have any questions for me?
    • No.
  14. If you could say one thing to me, what would it be?
    • I wish you didn’t have Hydrocephulas.

 

The only talk my daughter and I have about my Hydro, is when she notices the scar on my tummy or head after I wash my hair or she brushes it. She’s normally curious and just asks “Is that where the doctor cut you?” and, then winces as if in pain and gives me a cuddle.
All she knows is mum’s not feeling well at times and in turn gives me TLC with a lot of kisses and hugs. She’ll say things like, “Mum are you tired? You can have a nap mum you know (matter of factly)” or “You can just relax“…

I feel bad for my children. I’ll be honest and say, it wasn’t all that easy to read what my boys had written. If I had a lump before, then this broke the banks of my tears.

Unlike the previous posts, I had a face-to-face discussion with each of them separately to answer any questions but mostly to clarify anything for them. I started with Gabriel on a Saturday morning when we went for a walk, just the two of us.

I explained how I had developed the condition, how it makes me feel and what happens when I feel unwell. He is a sensitive child so I decided that, showing him photos of children with Hydrocephalus (who have not had treatment), would not be a good idea. So… I brought it down to his level and used the character, Megamind as an example. He smiled but immediately understood what I meant when I told him what happens to children with all that excess fluid pushing against the skull.

It was good for me to explain some things to him that didn’t make sense or were unclear because it gave me insight into what he actually knew and understood vs what he didn’t. Going forward, I have no doubt in my mind that he will always have my best interest at heart. His responses, showed me that he thinks about this more than I was aware of. My hope through all of it though, is that it doesn’t stress him out too much. I feel a bit guilty about this, especially since I realized that while I thought I was masking so well, that at least one person is fully aware of what’s happening at that time.

Later the same week, I had a chat with Jamie… 

As with Gabriel, I explained the things he too didn’t understand…where it all began, what meningitis is and the effects. He was too young to remember anything from diagnosis to the last 3 OPs, as previously mentioned.

When asked what he thought would be good support from him to me, he asked if he could provide support by helping out around the house and taking care of his siblings when I’m unwell? I said this was perfect and would certainly help. I further explained the importance of when I ask them to be quiet and when I need to concentrate, as these things affect me too at times especially when I feel unwell.

I explained why I’m always tired and need to rest. I told him about my sleeping episodes, my fears and asked him to be the backup when his Dad is not around. Check up on me when I’m not well, be alert and not take it for granted that “Oh, mum’s just sleeping“. I realize this might be asking a lot and placing a big responsibility on his shoulders. However, I’ve taken into account his personality and weighed up the odds of not telling at least one of my boys, about the possibility of going into a coma, in the absence of their Dad. He is very mature for his age and has proven to me, that I can depend on him when I need to. His brother on the other hand…lets just say, his sensitive soul guides me on this one.

Obviously my memory, or lack thereof, is a frustration not only for him but for me too though for completely different reasons. There is nothing I can do about this for him though…He’ll normally get frustrated with me and say things like, “I told you blah, blah, blah! Why can’t you remember“. Or “You’re always tired“.

In the end, he felt that he understood so much better and that so much made sense to him.

What have I gained from my children?

For starters, they cleared the misconception I have that no-one cares or understands. I’ve learned that breaking it down and explaining things in ways that they can understand or grasp is probably key. Also, we all react differently in any given situation…be it our personality, maturity level or how we relate to things, etc.

If I was worried before about who will take care of me one day when I can’t, then I can comfortably say now, I’m not all that worried anymore. It’s not about me placing responsibility wrongly on my kids but it’s my kids showing me in so many different and little ways, that they actually do care and given the right information (or instinctively), will act in my best interest. I’ve also learned that it’s OK to lean on them and not always feel like I need to be strong. They accept me in my weak moments and love me regardless…

This little exercise has definitely brought about a shift in our house for the better.
I am proud of my children and thankful for the lessons they teach me on a daily basis.
Just as any parent, I always want what’s best for my children. I will always feel the need to protect and shield them from any ill emotion or harm. This has been my biggest driver to date. However, the biggest lesson I’ve learned from my children is…I don’t always need to protect them, that they worry about me just as I do about them and more importantly that…IT’S OK TO NOT BE OK.

 

Thank you for taking the time to read.

Feel free to leave a comment, share this post and connect with me via any of the following:

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Hydrocephalus: Gaining Insight from Colleagues


Work…the place we spend majority of our precious time.  Colleagues…the people we spend more time with than our own family.  Just how important do you regard them to be?

In my opinion, we need at least someone who knows that we have this condition at work.  A person/s who has your back in case of an emergency.  Someone who is concerned enough to say “How are you doing?” And, actually wants to know because they care.  Luckily for me, I have a few people who know that I have this condition at work, management included.  I feel blessed to say, I have their support and empathy, which is more than I expected but grateful for nonetheless.

I know what a tricky subject it is to let your employer know that you have Hydrocephalus.  I also know that there are many of us who would rather suffer through a day than let anyone at work know that we are feeling unwell.  (Slowly raising my hand…guilty as charged).

However, I also realized soon enough that having people at work who I can trust with this information could just be what stands between me and an emergency situation some day.  If anything were to happen to me, I want to be able to feel comfortable knowing that someone will react from a Hydro point of view.

The following colleagues, past and present, have generously supplied me with some responses to the questionnaire I sent.  I accept it with an open mind and am grateful for their input.

To put it into perspective for you, my dear reader, my current colleague was not part of my Hydro journey from the start and is therefore limited in his responses from that point of view.  His responses almost fills in the gap for the last 4+ years since leaving my home country.

My past colleague with whom I was very close both at work and outside of work, has been there from the start (since diagnosis) and, can therefore give a better account but has not been a part of my journey for the last 4+ years.  Therefore the two respondents almost meet in the middle without realizing it…tag team if you like.

(I’ve decided not to correct the spelling of the word Hydrocephalus for the purpose of the post).

Current colleague and fellow blogger – Terence Brown

  1. What is your relationship with me?​
    • Colleague, and I’d like to say friend.​
  2. Do you know what condition I have?
    • Hydracephalus
  3. What is your understanding of this condition?
    • Fluid on the brain causes pressure, which is seen as debilitating headaches and possible memory loss? ​
  4. Do you know the signs and symptoms to be aware of when something is wrong?
    • Not exactly. But I would look for feeling faint, loss of hand eye coordination, and massive migraine​ 
  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?
    • 2
  6. What was your initial reaction when you found out I have this condition?
    • I was intrigued and wanted to find out more.​ 
  7. How did you feel when you heard I needed surgery?
    • Concerned
  8. Do you think I’ve changed since my diagnosis? If so, in what way/s?
    • N/A
  9. Have you noticed any significant changes in my performance?
    • N/A​ 
  10. What were your thoughts, fears or concerns when I had my second or subsequent surgeries? (If any)
    • Not too sure​ 
  11. Do you feel that (at any time), you changed towards me? If so, how and why?
    • N/A​ 
  12. What frustrates you most about me having this condition?
    • Not fully understanding as I don’t know what it feels like.​ 
  13. Do you have any questions for me?
    • Not at this time, but don’t worry, I’m not afraid to ask. :)​ 
  14. If you could say one thing to me, what would it be?
    • You display massive strength and enthusiasm even though you are faced with this everyday.​

What have I gained from this feedback?

Well, for starters, it was good to hear that Terence was “intrigued“.  This makes me think that maybe there are people out there who want to know more about Hydrocephalus, people who have never heard of this condition.  That maybe talking about my condition is probably not such a bad thing after all.  It doesn’t matter that his intrigue is possibly borne out of curiosity…What matters is that the condition is given the spotlight it deserves because this condition is not something to be ashamed of.  It’s not self-inflicted and is not caused through anyone’s actions.

Many people I’ve been in contact with, have displayed an interest in or commented on not “knowing what it feels like“.  I’ll have to think about the best way to describe this and that in itself might just be a future blog post.

The last statement made, “You display massive strength and enthusiasm even though you are faced with this everyday.​“.  All I have to say to this is:

Do I really have a choice?  I accepted the condition a long time ago as it defines who I am now.  I don’t know how to face situations without being strong (that in itself is another story for another day)…mind over matter most days.  My grandfather always used to say this and I finally get it.  In all honesty though, I do forget about the Hydro on the days when I feel good.  However, the days when I don’t, well that’s another story.

Ex-colleague and very good friend – Laureen Grimett

  1. What is your relationship with me?
    • Friend
  2. Do you know what condition I have?
    • YES
  3. What is your understanding of this condition?
    • Water on the brain…causing migraines, mood swings, short temperedness, irritability and tiredness.
  4. Do you know the signs and symptoms to be aware of when something is wrong?
    • Short tempered, easily agitated and distracted.
  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?
    • Seven to 8
  6. What was your initial reaction when you found out I have this condition?
    • Concerned but knew you would be fine with the right treatment.
  7. How did you feel when you heard I needed surgery?
    • Scared
  8. Do you think I’ve changed since my diagnosis? If so, in what way/s?
    • No and yes. No you have remained the honest person you are. Yes you’ve become anxious & earnest
  9. Have you noticed any significant changes in my performance?
    • No, or maybe…..you’ve always been driven/determined and always have set out to achieve your goals.
  10. What were your thoughts, fears or concerns when I had my second or subsequent surgeries? (If any)
    • Death or brain damage
  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?
    • That you may become too intense and focus too much on the condition to the point that it takes over the norm.
  13. Do you have any questions for me?
    • No
  14. If you could say one thing to me, what would it be?
    • Relax, everything’s going to be fine no matter what. Don’t obsess. People are survivors. Have faith, God is good and last but not least…… Focus on your family XXX XXX Miss you…too much.

What have I gained from this feedback?

The thoughts and fears Laureen had, are precisely the same as I had at the time.  There’s always a nagging feeling, despite having faith and trusting that the outcome will be OK, that death might be waiting on the other side.  The feeling of anxiety and fear takes over before any operation I’ve had to the point where my brain is numbed and my body chooses not to react or feel.  It is, obviously, a very unnerving time and one which I for one, cannot say is a pleasant experience.  As for brain damage, that will always be a concern for me too.  A very big one in fact.  I am an independent person and have always relied on myself for everything.  Knowing that this condition or any further brain surgeries could leave me at the point where I am a “burden” to my family or anyone else for that matter…let’s just say, it’s not very well digested by me.

I often wonder if having Hydrocephalus has consumed me.  I’ll be the first to admit it and say YES it has.  It’s not intentional nor will I make excuses for it being the case.  No-one can prepare you for living with a condition such as this.  I know that there are many chronic conditions that people live with on a daily basis, and even though I empathize with them, I can only react to the one I’m living with the way that I do.  I am focused on it on a daily basis and I am obsessed with it…How can I not be?  The reason for this is simple, I am afraid – There I said it.  I am afraid of “what might happen” see When death comes in the morning…  Having Hydrocephalus transcends my faith, it’s above me and brings out the weakness within me.  I am weak in the face of that which I don’t know and yet, it’s the place where I feel strongest.  (If that makes sense to you).

In closing, having a colleague who can empathize and show compassion is sometimes just what I need.  Like Terence who gave me strict instructions to get some rest this weekend after my last post Hydrocephalus : When I just feel like giving up…This is not an easy road to travel, yet having people at key points in your life, makes the journey that much more bearable.  It feels good to know I have colleagues and friends who care…

Check out my next blog in the Hydrocephalus Interview segment.

Thank you for taking the time to read.

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