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 cause anxiety and threaten my sanity!
My son once said to me; “You’re not living, you’re just existing”. The truth of his words hit me to my core. It was, no is, true. As much as I don’t want to be consumed by this condition, nor be defined by it, there’s just no escape. Maybe it’s the price I pay for blogging about it in my attempt to raise awareness…Compounded by the support I offer to anyone who needs to reach out and ask for advice, support, validation or share their journey with me.
My empathy will always remain, regardless…
So many of us remain sane, despite having to endure continuous brain surgery. Who could blame you if you lost your mind..? Lord knows I’m bordering on it! Another part of (my) reality I HAVE to face…
This is our life. This is what we have to endure into infinity. What kind of life is that? Where you have to make the most of it, on top of the usual daily challenges. Just trying to survive.
If you find yourself struggling under the weight of it all, I don’t believe you should feel bad or beat yourself up. You don’t have to be Little Ms or Mr sunshine all the time. Don’t let anyone patronise or guilt you into feeling bad about your reaction to your circumstances. You have earned the right to have a pity party, if only for one. Then, when you’re done, dust yourself off and carry on.
Remember: This is your journey, not theirs!
Everyone struggles. Everyone goes through something. But, does that mean we have to just sit back, take it and be grateful because it COULD be worse? It could always be worse, right? NO!
Having an incurable condition is like having a lifelong jail sentence imposed on you, for a crime you did not commit, with no chance of parole…That’s f’d up!!!
This is the reality of it. Just do the best you can and keep kicking Hydrocephalus’ butt! Don’t go out, without a fight!
Sandra Lawton
August 1, 2022 at 11:17 amYour words are indeed validating as I am probably looking at more shunt surgery if mine have been recalled. The revision that I had in May is not all that effective. It was initially and I do appreciate my week or so of no pain, but I expected more and I think I have the right to expect more after two surgeries last year and around a dozen others twenty-three years ago for the same reason. This time, I can remember and have not suffered the serious damage like before and that had robbed me of my career, my passions, and my memories, among others.
It truly sucks to be dependent on expensive imperfect technology to keep me alive.
Skyewaters
August 2, 2022 at 9:39 amIt definitely does! I will not argue with you on that front. We are robbed of so much when surgery doesn’t go as planned or our treatment option fails or Hydrocephalus decides to kick our butt! Just keep going. You’ve got this🙏🏼💙