Gaining insight from colleagues

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.

 

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