For context, you can read Part 1 of 2 here.
I know there’s not much I can physically do to change any of what I’m going through right now. As I try to process what is happening to me, willing myself into acceptance, I continue to mourn the loss of self. I feel myself “dying” inside, even more than I have before. Sure, I’m alive and have my eyesight because I have my shunt and ETV doing their job. (Pre-surgery, I started losing my vision). That in itself is something to be thankful for, right?
I am. Yet my own research has highlighted reason for my concern. Following the brain bleed I had during surgery last May (2021), this explains what I have been, and continue to, experience:
“When a hemorrhage interrupts blood flow around or inside the brain, depriving it of oxygen for more than three or four minutes, the brain cells die. The affected nerve cells and the related functions they control are damaged as well. A brain bleed causes brain damage and yes, they can be life-threatening. The seriousness and outcome of a brain bleed depends on its cause, location inside the skull, size of the bleed, the amount of time that passes between the bleed and treatment, your age and overall health. Once brain cells die, they do not regenerate. Damage can be severe and result in physical, mental, and task-based disability.” Source Cleveland clinic.
None of it is easy to accept…
Also, I know the likelihood of more brain surgery is always a possibility. I just don’t know how much more I can take…
The last two years have certainly left me feeling unsettled even more than I was, after my initial diagnosis (May 2007). I may have developed a false sense of security having gone so long between ETV surgeries – 11 years, 5 months and 2 days, to be exact! Honestly, the effects of having to endure more brain surgery, scares me to my core!
For now, my treatment options (Shunt and ETV) are successfully draining and redirecting my CSF. The shunt tubing causes havoc, from time to time, in my pelvic and abdominal region BUT, I need to remain grateful. (She says with a hint of sarcasm). Also, I can’t really complain about headaches as these are “manageable”. (Except for when they’re not).
My brain literally feels like it’s losing the fight.
So, I practice deep breathing, multiple times a day. It‘s just about the only thing I have control over. And, I remind myself that we ALL have one guarantee in life; NONE of us will get out of here alive!
My advice to you if you can relate to any of this:
- Be aware of the effects repeat brain surgery has, especially when those surgeries are close together. (I know, it’s not within our control but, being aware, helps – if only to maintain your own sanity).
- Reach out if you need to talk but, be sure it’s someone who feeds your soul and won’t break you down further. In fact, steer clear of those people.
- Take walks.
- Allow yourself to ugly cry (in the shower, if need be). Just let it flow freely.
- Give yourself a hug!
- Turn the negative self-talk into something positive.
- Stand in front of the bathroom mirror, looking yourself in the eyes and utter only words of kindness and love to yourself.
If you are a support person, family member or friend
- Be aware of the effects this condition and repeat brain surgery has.
- Be kind.
- Be gentle, but mostly,
- Be patient, supportive, empathetic and understanding.
This may be some of the hardest times you’ll face, however, you’ll never know how important a role you play, simply by being present and supportive.
I sometimes think I’m too honest for my own good. Most people won’t share as much as I do in some of my blog posts. Admittedly, this journey of life that I am on, not unique to me, is a lesson for all of us. I just choose to share what I’ve learnt in the hopes that it makes the trip slightly easier for someone else. OR, that they feel less lonely, validated even. It’s definitely not for sympathy or attention-seeking. Though, I will take hugs, virtual or otherwise!
Will I succeed? Am I going about it the right way? Who knows?!
Anyone who judges me for my efforts, that’s a “YOU” problem.
I’ve been trying for years to be heard, even before the moment of my diagnosis with Hydrocephalus. I finally feel like I have a surgeon who is, has and does. We always say; “You are never alone” however, the hard reality of it all remains – I AM ALONE!!! This realisation makes it worse…
Dementia and Alzheimer’s — what’s the difference?
This article, about Chris Hemsworth, highlights quite a few things for me as I recognise so many of the effects of what I’ve been feeling.
Dementia – a broad term used to describe the gradual loss of someone’s memory, intellect and ability to think rationally. Dementia is not one specific disease, but a collection of symptoms.
Alzheimer’s – a specific disease that affects the brain and causes dementia.
What are the symptoms?
According to Dementia Australia, the most-common symptoms of Alzheimer’s disease include:
- Vagueness in everyday conversation
- Repeatedly saying the same thing
- Taking longer to do routine tasks
- Forgetting well-known people or places
- Changes in ability to plan, problem solve, organise and think logically
- Difficulty processing questions and instructions
- A decline in social skills.
I can relate to ALL of this. The parts of my brain that are still working, will be used to keep on surviving. That’s all I can do. It’s not about wishing anything on myself because, trust me, if I had a choice, this would not be my reality.
It’s about knowing I have these challenges, facing them head on, and deciding what I do next. It may not be my idea of what life should be but, while I have breath in me, I’ll find a way through this…