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Skye

November 28, 2016

  

 

Hi !My name is Celeste A. Daniels, author and founder of Skyewaters.com. I was diagnosed with a brain condition called Hydrocephalus at the age of 29 after contracting viral Meningitis at the age of 15 and then again at age 22, which left me with chronic daily headaches. I decided to get myself checked out and after having a CT scan, Mild Hydrocephalus due to Acqueductal stenosis was the determining cause of all my pain. It was a struggle with doctors at that point in time because, even though they had the results, they refused to believe that I actually had Hydrocephalus. A Neuro specialist, my 3rd opinion, told me that I was suffering from overuse of pain medication and after just 6 months of treatment with him, he would have me cured. He asked if he could perform a lumbar puncture to ascertain my pressure and just to rule out the Hydrocephalus...I agreed.

It was this pivotal moment that changed my life forever. (One would think the diagnosis of Hydrocephalus would be but this...this was the cherry on the Hydro bomb). He performed the lumbar puncture, the pressure was high and his words will remain with me forever "/IF YOU WERE MY PATIENT WHILE I WAS STUDYING TO BE A DOCTOR, I WOULD HAVE SURELY FAILED. YOUR PRESSURE IS HIGH AND WE HAVE NO OTHER CHOICE BUT TO OPERATE...IF WE DON'T, YOU COULD SUE ALL THREE OF US INCLUDING THIS HOSPITAL/". And so began my uphill fight with not only an incurable brain condition but also the medical professionals who are meant to save us.
   I did not know what lie ahead, nor did I have an inkling of the fight I would need to put up, to advocate for myself. Within 2 years, my shunt started giving problems and the very surgeon who operated on me, became reluctant to listen to my pleas and concerns that something was wrong. At one point (/clearly irritated with my constantly coming back to him and complaining/), he adjusted my shunt the wrong way and rendered me partially comatose for a few days. This might not seem like a big deal but at the time it was...My boys were aged 4 and 2 the morning I was meant to wake up, take them to school and go to work. However, I woke up for 5 minutes, rushed around like a maniac because I had overslept and fell backwards onto the bed behind me - passed out. My husband came home from work, after being alerted by my manager that I had not turned up for work, and found me lying on the bed in the room, with the kids in front of the TV, eating anything and everything in the luxury cupboard because "/MUM IS SLEEPING.../" The surgeons response to this when he changed the setting, "WELL AT LEAST NOW WE KNOW WHAT SETTING NOT TO USE FOR YOU". All the surgeons and specialists in my home town, turned me down and sent me right back to the surgeon who operated on me initially...I was at wits end.

I travelled to a different city, 5 and a half months pregnant but desperately in search of someone to help me. A neurosurgeon had squeezed me into his tight schedule and after some discussion, decided that we would do a lumbar puncture to ascertain my pressure and possibly operate after the baby was born. However, the pressure was high and I was given the weekend to rest up and come back the following Monday to have part of my tubing replaced, I would "/BE OUT IN A DAY OR TWO/". I remember going to sleep that night but nothing else about the next week as I drifted in and out of consciousness in ICU. I spent 2 weeks in total, in the hospital.

I was later told that I had 3 brain operations over a space of 3 days, 2 were shunt replacements and the last one was an emergency removal of the shunt, followed by an Endoscopic Third Ventriculostomy. I received Physiotherapy to learn basic things like how to walk again, etc.
It's defining moments like these that make me realise how unpredictable this condition is. It has broken me down but more so they have been moments that have built my inner strength and core endurance. Moving countries in the hope of finding better treatment, have left me void of any illusion that it truly does exist. The new country I am in has been nothing short of disappointing and at times, have left me feeling helpless and abandoned. I decided to write about my journey, Hydrocephalus : Floating Faithfully[2], in the hope of helping others like me and also to detail what I have been through as a reminder for myself. I have many moments where I just want to give up and there are many times when I have and questioned God (/sometimes even cursing or wishing I were rather dead/). However, each time, I have managed to get back up and grow stronger in my faith and resolve to do what I can to stay afloat.
   Hydrocephalus is a condition which, affects your short-term memory, cognitive and processing abilities, the pain can bring you to your knees in a matter of seconds, among other things. Being diagnosed as an adult with this condition, it has robbed me of the person who I used to be. But...I have changed, grown and undergone a metamorphosis of sorts into a person who is stronger because of it (/though not physically/). A person who decided along the way to start a little blog called Skyewaters.com[1] so I can be a voice for myself and those, like me, who endure the same challenges, disappointments, heartache and successes. It can be very debilitating but on the days when I can, I choose for it to be the strongest aspect of who I am.
  I've never really thought of it as a disability. I certainly acknowledge that it's an invisible illness which comes with many challenges that "/normal/" people have no idea about. Things/tasks that others take for granted in their ability to perform adequately, I might struggle with by either taking longer or not being able to do at all. I would therefore say it's rather my (in)ability to be the 100% version of the person I used to be before diagnosis and brain surgery. I've come to accept it, despite the struggle others around me have to do the same, and I embrace the life I now live. I cannot change what has happened to me nor will I ever understand fully why it happened at all. But, this is me, this is who I am and if being a voice for the Hydro community is what I'm meant to be doing, then I accept it fully without question. This is me being an advocate for myself and especially for others like me...in hope of spreading awareness while remaining optimistic about the day a cure is found.
    If I had to offer a word of advice to anyone, it would be this:
Don't be too hard on yourself. Life is not easy and the challenges we face might not resemble those faced by others, they may seem unfair or insurmountable but, you can get through it. If you feel angry, resentful, weak or negative in anyway, allow those feelings to surface and come to the fore, at least that way, you know exactly what you're dealing with. Pick yourself up and repeat these words, "I CAN DO THIS!" until it sinks in because you can.

 

 

 

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