Friday, January 24, 2014

Media views on Hydrocephalus: Miracle in Lane 2

This blog along with several others that I've done is about well-known people with Hydrocephalus or shows or movies that have focused on it. I've written about most of the well-known people that have Hydrocephalus that I know of. Now I want to focus on shows and movies which involve more research, which is why I haven't written about this topic in a while.

I'm focusing on a made for TV movie this week that originally aired and used to be played frequently on the Disney channel. The movie originally aired when I was in the 8th grade (2000). At the time I didn't know anyone else with Hydrocephalus. I discovered the Hydrocephalus and talked to a few people from a Hydrocephalus e-mail group but I wouldn't meet anyone in person or really connect with anybody with it online for almost a decade. Also at the time my only surgery was when my shunt was placed at 16 months, and rarely had headaches. Currently I've been having headaches and migraines on a daily basis but for now I'm revision free still. I had and still have other problems that have to do with my Hydrocephalus but not the childhood brain surgeries that most kids with Hydrocephalus experience. I realized that on average normally people with Hydrocephalus would have to have a shunt revision every 2 or 3 years, so I knew that in that way I was different than the main character in the movie and most people with Hydrocephalus. It's also why I avoided talking about Hydrocephalus with others because I felt like I was a poser because of the lack of surgeries I've had. What changed that ended up being the first person I met on Facebook who had part of his experiences with Hydrocephalus on his profile. He's about 25 years older than I am and only has had a few surgeries since childhood and his current shunt is about the same age as mine. I met a lot of others with Hydrocephalus through him within a pretty short period of time, and the first few were within the next couple of days. Another of those few people was someone who has become one of my closest friends out of all the people I've met online, had a revision free childhood and had his first surgery when he was a adult a year or two before I met him.

The movie is a true story about a kid living with Hydrocephalus and Spina bifida named Justin Yoder. The movie is about how was inspired to become a boxcar racer and win. His family fought a rule that you could only use a foot brake and not a hand brake. Even if I didn't had to deal with surgeries or being in a wheelchair there was parts of the movie I could relate in one way or another. It didn't matter much to me because neither of my siblings played sports, but contact sports was the one thing that I was told not to do so I wouldn't get hurt and ending up damaging my shunt, so I would have to sit out a lot of the time. When it came to his family talking about his surgeries, the struggle to play medical bills and also his revision during the movie I could relate to it because I knew that it could happen to me without warning too even if it's something I never experienced. Our finances were usually tight growing up, so that made the thought of the possible emergency surgery more stressful.

There's a link to a site where you can stream the movie online. It does ask you to download a movie player but the movie should play without needing to download anything. Thanks for reading :)

Friday, January 10, 2014

Customer service experience with a kid with a neurological disorder

I'm going to write about something that was inspired by a positive experience at my job during my shift tonight (Wednesday). I had something else planned but I would have needed to include research and I need to replace my laptop so it would have been hard to do. When I was growing up I knew very few people with neurological disorders, and even less people that were around my age with them. If I knew anyone with Hydrocephalus, I wasn't aware of it. I was a couple of high school and had just started to work at my second job when I met my first close "brain buddy". He has Cerebral palsy, and knowing him has helped me recognize it in other people. I've known others with cp since before I knew him, but they usually had a worse case or I didn't realize what was wrong with them until later. Other neurological disorders can show the same symptoms too though, including Hydrocephalus, strokes and seizure disorders.

About half way into my shift during the busiest part of the evening I walked out of the backroom onto the produce sales floor getting ready to write a list for what needed to be on my next cart or two. A kid that looked like he was 10 or 11 stopped me and asked me if I could check the price on a bottle of sparkling juice that we have during the holiday season. I told him that I had a scanning gun and I would be right back. I saw him walk forward and noticed his limp and that it affected his whole right side, especially his arm. I recognized it right away as having to do with Cerebral palsy or another neurological disorder. I felt bad for him, knowing the challenges that my friend has dealt with and the challenges that people with neurological disorders in general have to deal with from personal experiences. Rather it's being more likely to be bullied, the way people see him or different kind of therapies. I went to the department back room to discover that someone had taken my scanning gun so I told him that I needed to go to the front but I would be back in a minute. I went and got a gun from behind customer service and started to sign into it as I started to walk back in his direction, and I was surprised to see that he had walked across the store and was waiting for me in front of the registers. It ended up being too much and I put it back for him. At some point during this time I noticed what looked like a shunt scar on the top of his head, I noticed because of his short hair cut. I didn't ask because I didn't want to find out I was wrong or point out something he may not want to think about. If he does have it, it might have been encouraging to meeting someone else with it, but I'm sure it was obvious that I at least have a neurological disorder of some kind too. Something that I didn't think of until after he and his family left was that if he does have a shunt it would have probably be visible in his neck area and even if I was face to face with him multiple times I didn't think to look. I ended up running into him one last time, somewhat on purpose because I wanted to do something to make his day without him realizing it was because I felt bad him. I still had the scanning gun in my hand and helped him check a couple prices so he could find a different holiday drink.