On one weekend in September, I volunteered with my local United Way assisting with their Day of Caring event in my area. This was a great chance for me to get out of the house. I had the usual head and shunt issues as I’ve been having for months now. I’m glad was able help on that day and fortunate enough to travel despite having head discomfort.

A group shot of myself with several other volunteers at United Way last month.

One of my brain injury awareness shirts.

X Ray of my shunt in 2014.

September is Hydrocephalus Awareness Month (HAM). I have collection of brain injury shirts I’ve acquired over the last few years from Teespring.com. Today, I have head issues as usual. My medical device continues to adjust each time I move my head. Sometimes when I’m moving from crouching down near the floor to standing up I get a rush inside my head and dizziness. This also happens when I move my head from side to side. I try not to take pain medication everyday only when I feel I really need something. I also have pain behind my right ear today….fragments of my old shunt are still there and they’re in my abdomen too…Those pieces couldn’t be removed.

Earlier this summer, I made a short film, Life with a Shunt (2018) about what it’s like for me to live with a cerebral shunt inside my brain. My experience doesn’t reflect every one’s daily life with one of these medical devices. I made this film, because of the response I received from my previous film, Shunt Chronicles: My brain, art and school (2015) Someone had said mentioned to me they didn’t get a sense of what it was like to have a brain shunt. I wasn’t about to add an extra scene into the film, as I would have to get it transcribed again for new subtitles.

My battle scars from shunt surgeries in 2014.

I try to educate as many people as I can about how shunts can be put in the wrong way. I wasn’t aware this could happened until I experienced this in 2014. Since then, I’ve heard the same story from a friend, who had a patient ( an older man) who the same thing happened to him. She was helping him with balance issues (she’s an Occupational Therapist) and once his shunt was returned to where it belonged, his balance issues improved. I have feeling shunt misplacement may happen more often then people realize…

As mentioned before, I would like better treatment options. More reliable shunts, like ones with expiration dates so you know when surgery might be needed. I mean, food and beverages have expiration/sell buy dates…why not medical devices? Maybe as they bring in more robots in to the operating room, mistakes will be reduced…?