(Not sure if that’s even a thing but, it is for me)
I’ve always been able-bodied. So, my comparison will be based on what I “assume” it’s like to lose function. I can’t really explain it but, my brain feels stuck. I wasn’t born with hydrocephalus so, knowing what life was like before it, makes it hard some days. (OK, most days!). Feeling brain paralysis is like being stuck in a torture chamber or straight jacket. It’s the equivalent of being buried alive!
These examples spring to mind:
- Have you ever been held down (physically) against your will, tried to break free but just felt extremely powerless? To the point where you felt physically ill. Or,
- Can you imagine being able to walk and run, then struck down due to an event, leaving you paralysed – unable to walk or run ever again? But, inside of you, you yearn for the rush that comes with being able to go and do whatever you please. The freedom that accompanies it based on your memory of the experience.
How I feel with my brain
I have all these thoughts inside my head, things I want and need to do and yet…I can’t. Thoughts have slowed down to a crawl. Cognitive function has changed noticeably. I feel useless yet I KNOW I’m not. The balls of life I used to juggle, have all come crashing down. No matter how hard I try, I simply can’t find a way around any of it. Some people might say I’m blaming it on the wrong thing. They may even go so far as to outright refuse that it’s the case, simply because they have no idea how hard I work at getting through each day.
It’s exhausting..!
The only two significant things that I’ve endured (aside from 2 other operations), these past 2 years, is brain surgery. Less than a year apart. After both of these, I feel worse off even though other symptoms have improved. Like my blurry/loss of vision, dizziness, headaches and nausea. It’s like I’ve swapped one poison for another. I don’t think it’s a case of being ungrateful or complaining, before anyone judges me.
Even agreeing to have surgery is enough to cause thoughts like, “Is this self-inflicted?” Or, “Maybe I shouldn’t have pushed as hard”. To say I feel “responsible” would be an understatement. The alternative of not doing it though, highly likely, could have resulted in completely losing my vision, or worse. This I know…
At this point in time, I don’t want to hear that I am stronger than I know. Like I’m supposed to just accept the load life throws at me.
What if I don’t want to carry the load?
Asking; “Why not me?”, is not a sign of strength. I’m not looking for a reward or recognition of my endurance. And yes, I have prayed about it – endlessly…
I am in here, inside this body, screaming to get out! But, it’s that same feeling of powerlessness I felt, while being bullied as a child…held down against my will. It’s even more sinister and cruel when you have people who expect you to carry on as normal, when you feel anything but!
I wouldn’t dare tell a person in a wheelchair to get up and walk, yet, that’s exactly the expectation I feel from the pressures of life.
Robert Myers
October 12, 2022 at 6:46 pmHi Skye,
I read your post. I want to first extend my sincere sympathy to you. I had VP shunt replacement surgery in 2018. I had the surgery in late August or early September. I returned to work on October 22. Nothing prepared me for that day. I somehow made it to work, which in light of later events, was amazing.
I went on break, and as was my usual practice, I wanted to go to my car for a few minutes of sleep, as I worked 12 hour shifts.
I went to the parking lot, and I realized quickly that I couldn’t find my car. I spent 30-45 minutes looking. All of a sudden, I saw it! I got a call from my supervisor, who told me to report to our on-site nurse. She told me to leave immediately, and to sign up for disability. I haven’t worked since.
I’m telling you this because that was my worst example of “brain fog”. Four years later, I have discovered that I must write daily activities/plans in a notebook. I’ve recovered enough that events that are hard-wired into my week don’t need to be recorded; however, that isn’t the case with even simple, daily activities.
I’m sorry if it seems as if I dwelled on myself, but I wanted to show that I struggled—and still struggle—with the issues that you describe. I wish you the best!
Rob
Skyewaters
October 12, 2022 at 9:09 pmHi Rob. No apology necessary. I can empathise with your situation and have been in that situation of looking for your car. It’s enough to drive you to tears!
As for what happened to you and the way your company handled the situation, that’s just terrible. No one should be treated that way…I truly am sorry that happened to you.
On a brighter note, you are right. The coping mechanisms we use to get through is what makes the difference. I too write things down and rely heavily on my phone for this. Some things simply don’t stick, and that, I’ve come to accept. I don’t like it but, I can’t change any of it.
Thanks for sharing💙
Marion
February 2, 2023 at 4:44 pmSkye well written. I wish I could write like you do. I struggle to get words written down. I hear your thoughts on it is what it is. I’ve tried to do the best I can. Yet it is not enough. I can hardly attend group meetings that are suppose to help me. Yet I can’t keep up. I want friends. Some do bot know what to say or do. I do have some friends I cherish. They are with me to the end.
Live for this minute. That’s all I can do. Feel free to contact me.
Skyewaters
February 3, 2023 at 4:14 amThank you Marion. It’s becoming harder for me to do. But, for as long as I have words left in me, I’ll keep writing.
Living for this minute is indeed all we can do. I’m forcefully doing so, or should I say, trying to. Hang in there 💙
Anonymous
October 12, 2022 at 3:25 pmIm with you all the way.
My situation is that I was born with hydrocephalus and mot given very good odds.
I was blessed with a great team of doctors who were able to treat my hydrocephalus with a shunt at 10 days old.
I consider myself lucky that I didn’t have as many problems as so many other hydro-warriors do but I had more than my fair share.
As a child, I struggled to be part of the mainstream and did quite well.
Im part of the over 50 crowd and as my body gets older, it doesn’t deal as well with my hydrocephalus. My levels of medication keep getting raised to curb my symptoms.
Its one thing when people who don’t know me don’t have any empathy for me but its worse when those closest to me don’t have a clue what I go through on a daily basis just to be “normal.”
I was blessed with two very loving and supportive parents who are now both gone. If I didn’t have such a wonderful little sister who has “been in my corner”all my life I don’t know how Id make it.
Skyewaters
October 12, 2022 at 9:05 pmI can fully appreciate all that you have said and can totally relate to some of it. Thank you for sharing 💙