Catch 22

It seems to me that I start almost all of my posts by saying “I am sorry it has been so long”.  I guess my weakness is procrastination. I gotta work on that one. Anyway, I thought my recent experience would make a decent story, so I can only hope that you feel the same. I was told by my doctor to start writing about what I feel in regards to my Deep Brain Stimulator.

As I have said in previous posts, I got the Deep Brain Stimulator (DBS) implanted in both hemispheres of my brain in the Summer of 2011. What I have not told you is that there have been some changes in my life as a result of the device. First and foremost, I find the device to be extremely beneficial. After turning on my DBS, I instantly see a reduction in my spasms. My movements then become more fluid and smooth. Best of all, my speech becomes more clear. All these benefits are a great escape from the reality of having Cerebral Palsy.

Unfortunately, I have found there are some negatives associated with the DBS. I need to find how much I am willing to give in order to receive what I want from the DBS. For now, I am still coming to an ultimate decision on whether I should keep the DBS on or off; mostly due to the fact that there is definitely a difference in my disposition when my right side DBS is activated. My thoughts are somewhat negative at times. In general, my whole perception of the world changes. It is like a feeling of constant anxiety and stress. My stomach forms into a knot that gets pulled tighter and tighter until it reaches a breaking point. Furthermore, my thoughts seem to consume my mind at times. I find I can sit somewhere and zone out, becoming trapped in my mind. The feeling is not unpleasant but it is not something that has any positives. The experiences do not sit well with me as it is an almost unconscious decision. Additionally, I feel I lack creativity when “turned on.” When I am talking to someone, it becomes a chore. The anxiety just hovers in my mind, blocking suggestions of what I want to say. This is the most frustrating effect, especially when I am in high school, a time when socializing is key and a priority for most teenagers. Unfortunately, when I have the right side of my DBS turned off, the Cerebral Palsy comes back. The difference is extraordinarily apparent to anyone including myself. My left side becomes much less of use to me because it is in constant spasm. Luckily, that is where Botox steps in to help.

As of now, I have the right DBS electrode turned off. Although, it is not a permanent decision, I do not want to have a piece of metal that was a hassle to implant become useless. Also, when I did some research I found that the right hemisphere of the human brain controls “rhythm, spatial awareness, color, imagination, daydreaming, holistic awareness and dimension” (http://www.thethinkingbusiness.com/brain_zone/brain-tour/brain-hemispheres). I highly doubt that my ordeals are a coincidence that can affect so many functions of the brain. Maybe this is the philosophical “know it all” teenager in me, but I find it ironic that when I try to stray from my disability, I lose a sense of who I am as a person. Could Cerebral Palsy’s influence on my views be of benefit to me? I think so.

Summertime is just around the corner and I will have more time. So, you have it in writing, I will write on a monthly basis come the Summer. Thank you so much for reading and for those who celebrate, have a very Happy Easter.

Michael