The blood stains on my pillow case

The blood stain on my pillow case remains. October 2, 2019 was when it all began. And I didn’t realize the severity of it until I saw the blood stain on my pillow case.

It all became real when I saw the scar on the back of my head for the first time and the emotions have been running ever since then.

I am trying my best not to cry as I write these words on this page. I am dealing with the emotionality of a severe medical procedure that is taking a huge toll on my emotional health and progress that I have made this past year. I have been trying to find the appropriate way to deal with all of this and I have yet to figure out what that might look like.

So I sit extremely overwhelmed by the thought of all of the emotions that I feel. I feel overwhelmed and I am trying to control my emotions but I think the reality of the situation is that maybe I need to sit in the middle of the floor in my room and cry? Or maybe I need to find the words to write it out (which do not seem to be helping at this current moment because I am trying to do so right now.)?

I do not know what to do. Some amazing women I met in the lobby of my neurosurgeons office said that I would feel this way post op. It is entirely true and I am entirely not sure how to handle it. The anxiety in my chest is building and I am not exactly sure of what is causing this overwhelming amount of emotions. How do I handle this?

Well, I think I am doing what I usually do and that is babbling until I am able to get out what I think is the point of this. I think I am feeling a lot of resentment and a lot of feelings that involve the words anger, rage, and abandonment. I feel all of these things toward my body that have been the culprit of this crippling brain disorder and this overwhelming brain surgery that all still seems to be so very surreal.

I think that I am angry because I am in that “why me” phase of this. I never reached this level of emotion while I spent 7 years in my “what the fuck is this” phase. So now I am feeling the, “why do I have to live this life? Why did I have to have brain surgery? Why is this apart of my journey given everything that I have already experienced in this lifetime?”.

I am only 26.

For the last 7 years all I have heard was “You’re so young. You’re too young for this”.

And I know that people mean it in a non malicious way. But for me it is a slap in the face. I know that I am so young to be dealing with all of this and it hurts at a ridiculously huge level of emotional pain I didn’t know existed.

Aside from the “Why me?” it is “what do I do from here”.

How do I process this? Not just brain surgery. But, partial ankle replacement, tendon reconstruction, bunion repair, sinus disease, and septum repair. How do I process this all in a healthy way?

I feel like I want to go into isolation and completely disappear from the world until I can get the grips back on my reality. BUT THAT WOULD BE REVERTING TO THE OLD NIA RENEE. And that is something that I cannot do.

I had to take a step back from this post as I was unable to put words to what I was wanting and needing to say. This journey has been incredibly rewarding but at the same time it has been incredibly difficult.

February 2, 2020

I have been writing this blog post since November 2019.

This has been the hardest post that I have written because I have had to take several steps away from this post trying to get my mind together after what 2019 did to me. Aside from my many medical trials of 2019 the mental and emotional affects were much greater than I ever imagine. I am still trying to stitch myself back together like the zipper scar on the back of my head. I have not been able to wrap my head around what happened with my brain surgery (pun intended).

My emotional and mental state is fragile as I am trying to come to terms with everything and I am realizing that I am not okay as I thought I was. I am very emotional and I am sorting through all of the emotional debris that comes with having a chronic illness as well as the need to have brain surgery. Nothing about any of this is easy.

I no longer have the bloody pillow case but it was something that I did hold on to for awhile. Seeing it made it very real for me and I had to get rid of it because I couldn’t stop sobbing into it. The things I realized I emotionally went through during the time of my initial weeks of recovery were:

  • Anger
  • Depression
  • Sadness
  • Anger
  • Anger
  • And a whole lot more Anger
  • Tears
  • No Tears
  • Numbness
  • More Anger

With all of that I realized that those emotions are normal but I am also taking the steps in seeing my talk therapist again and I am going to continue to check in with my emotions and take them as they come. I am only four months post op as of today. And I realize that that is not a sufficient amount of time to emotionally and mentally heal from such a major surgery as well as what comes with dealing with a chronic illness that is going to be with me for the rest of my life.

To my fellow Chiari warriors,
Those who have not had the decompression surgery and those who have had the decompression surgery it is something that we will deal with. It will be something that lingers in the background. We will have good days and we will have bad days. Either way it goes we are bad asses and we will get through it. So don’t forget to be gentle with yourselves.


A fellow Chiari Warrior and a Battered Woman.

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