My head (from 4/9/14)

When I look at the most recent picture/update (on my GoFundMe site), my eyes are drawn towards my head.  (To me)  I only see my head.  I only see it bandaged.  I only see me, laying in the bed alone, because I was the only one who was walking through this experience.  I remember my mom wanting to take a picture of me and I flat-out refused.  A picture of this? Of this moment?  Why?  Who wants to see this? Who would want to even remotely remember this moment in time?  She took this picture the night before the first brain surgery.  But she didn’t give up.  In hindsight, I’m glad I allowed her to take it, but I just couldn’t look at the camera.  I didn’t want anyone to see me like this.  I think the picture made it too real.  The camera made it too real.  Up until that next morning, I was still living in denial that I wasn’t going to have to have my skull cut open.

I have more pictures of after surgery.  The incision, its healing.  I looked at a few of those pictures a few nights ago and oddly enough, I felt a small out-of-body experience looking at those pictures.  I didn’t really identify, or know how to identify, with that person.  The person who had their skull opened twice.  The person who, almost 3 years later, is still dealing with the effects of a brain tumor and rare disease diagnosis.  In my defense, I know I’m better than I was.  And, with that being said, that gives me hope that in more time I’m going to be even better in the future than I am today.

Edit 5/8/17:  I was going through my Drafts folder and found this post.  So funny how this post brings up so much anxiety even from 3 years ago.  I am so thankful I have this blog to document my life.

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