The story and death of 8-year old Vincent Barker, even though it’s a few years old, has left me with a sadness for this little boy and his family. I’ve always had a lingering thought, “I hear about how dangerous Hydrocephalus is if left untreated but just how dangerous is it really?“. I know this is a bit of a risky thing to be thinking but let me justify it for you. I’ve had doctors tell me that I don’t have Hydrocephalus, have never had it, that meningitis can’t cause Hydrocephalus and another one who says that it can, that I’ve misused pain medication and developed a dependency, etc. There have been so many conflicting stories on my journey and all the time, I’ve been left wondering “If they don’t see the urgency in me getting help when my symptoms play up, then maybe I’m just being paranoid“. Medical professionals have a good way of making one feel like a nut case, seeing fairies and dragons where none exist because they aren’t real. I for one, as paranoid as I can be at times about my health, have enough sense to know I’m not that kind of “crazy“.
I don’t have a regular Neurosurgeon who I can consult if I feel concerned about any new or recurring symptoms. I’m left in the dark most of the time and have driven myself a bit batty with all the information regarding failures, symptoms and signs for concerns by reading and re-reading anything and everything I can find regarding Hydrocephalus. The reason why the story of this little Hydro warrior strikes me is that I devised a plan last year that (should the need arise), I would just get an eye test done. My thinking was, they would be able to pick up if there was pressure without me having to tell them why I really made an appointment. If ever the pressure is high, I would know my next course of action, which is better than the situation I have currently…where there is no plan and being reactive is the status quo.
I’ve been using my free consultations with the optometrist, which I get with my medical insurance, to have one done last year and again this year. I figured that if the surgeons/specialists won’t be proactive in regards to my Hydrocephalus by doing a yearly scan at the very least to make sure everything is still working fine, then I would do this. It gives me peace of mind, (for a little while) something which I haven’t had in a very long time since diagnosis.
Coming back to the story of Vincent. I can only imagine what this little boy must have gone through in his final days. When I had meningitis (twice – 7 years apart), I felt like I could literally climb the walls. The pain is so severe, that you feel as if your brain is going to explode into a trillion pieces…out of every hole in your head. I would probably liken it to a scene from the exorcist-type movies…not a pretty sight. Then there’s nausea and vomiting, made worse by the slightest movement of a limb and every throb of the pain in your head. It leaves your body lacking any form of energy because you are literally under attack from mission control, clearly not your friend. You are left physically exhausted and lack any form of feeling except a constant yearning to just die because death seems like an easy way out.
This condition is not easy to live with, as I’ve said before. There are so many people around the world who suffer because of it, so many who are helpless and have no aid. When I allow myself to think about it all and really empathise, I feel extremely overwhelmed, to say the least. I wish a cure could be forthcoming…I wish that after all these years of research and tests, that by the will of God we could all be set free from the pain and suffering.
Vincent’s story hasn’t left me feeling doubtful of seeing an Optometrist. If anything, it’s made me realise that this is just one more avenue where I need to be aware of being careful in who I choose and trust. I previously posted on it’s a matter of trust and making sure you choose your surgeon carefully (if you are lucky enough to). Also, because of the struggle I’ve had up till now with medical professionals in dealing with my Hydrocephalus, I’ve learnt to toughen up and be an advocate for myself. If I am not able to, I’ve made sure I have a close friend and my husband, even my children, who will speak up for me when and if I can’t. Based on this story, I’d say it’s probably equally important to develop a relationship with an Optometrist you can trust, especially one who knows your history because it might just be the fine line between being proactive as opposed to being reactive.