I found this quote a while back, but it still resonates with me. More importantly, it validates my experiences thus far. Not only has it been true since my hydrocephalus diagnosis (May 2007), but it’s especially true following the Intracerebral Hemorrhage I had, during a repeat ETV (May 2021). Life changed in an instant, albeit…
There’s no manual for surviving, or living with, hydrocephalus. The effects of the condition, and the consequences of treatment options, touch every aspect of a person’s life. Also, we all experience the condition differently. I still maintain, how YOU feel about YOUR own journey, is up to YOU. Don’t let anyone tell you how to…
Let’s be honest: They are human too (despite some of them having a god-like complex). They can, and do, make mistakes but they also save lives. The difference: A surgeon who doesn’t make the effort, gives up because it’s too hard, or simply dismisses your concerns. VS A surgeon who goes the extra mile in…
We are caught between a rock and a hard place with this condition, WANTING and NEEDING help to make the pain go away but, NOT wanting to endure MORE brain surgery. The irony does not escape me..! It’s not an easy thing to go through, by any stretch of the imagination. It’s a vicious cycle;…
So much of what we face in life we have no control over. Some things we can change or simply eradicate from our lives. (That goes for some people too). But, sometimes there aren’t choices given with the challenges we have to endure. The only choice we get, is how we react, or respond to…
An iceberg seems appropriate for this post and, the sinking of the Titanic, is a perfect example of not realising the full extent of what lurks beneath the surface, hence the image I chose to use. IMHO! The unseen can sometimes cause more damage than what’s apparent to the naked eye, especially when it goes…
For context, you can read Part 1 of 2 here. I’ve always been one to take care of others, especially my children. The thought of “slipping”, is leaving me feeling quite perplexed! C. A. Marriday I know there’s not much I can physically do to change any of what I’m going through right now. As…
Some days it feels like I’m literally floating through life, day by day. Caught in a never ending loop, facing the challenges this condition imposes. I want and need a break… Faced with the reality that the treatment options, keeping me alive, are not ideal. They fail. They need unscheduled TLC. They are unpredictable. They…
Stress induced headaches are bad enough to mimic hydrocephalus headaches. The last 3 days and nights, I’ve had this kind of pain. Unfortunately, I haven’t been able to take any pain relief strong enough to alleviate the discomfort. So, I grin and bear. Thankfully today, my 45th birthday, the pain has eased up (lingering slightly)…
You know when someone, on your friends list, updates their relationship status online to, “it’s complicated”? Generally, most people frown, but understand, and accept this for what it is. No explanation or definition, of what it means, required. The same can he said for this condition. At it’s very core, hydrocephalus is complicated. At the…
