January 2009

I had thought, it being January and the middle of winter, that perhaps it would be of great use to share all of the things I have picked up in the past fourteen winters since my surgery that have helped me survive the cold and ice. This perhaps I will do in the future, but lately I have been feeling that I should be a bit more personal, and share some of my own experiences with the challenges of having had a hemispherectomy. This particular story is of something that happened to me when I was all alone, but it means a lot to me. I actually wrote about this incident for one of my workshops at school, and so it has been at the forefront of my mind for a few months. I thought that maybe I should include it here. I am not sure if it will mean anything to anyone except me, but I am willing to share a piece of it.
Even though I have permanently lost the ability to run, I have found myself with the urge to do so many times. Despite the fact that it has been over a decade since I have had the ability to run, these urges have been around for quite a few years, I first noticed them when I was in high school. Often they come on suddenly, usually when I am preoccupied with other things. All of a sudden I will want wholly to do the thing that I can not do! Regardless of how many people I have asked to teach me, no one will help me learn to run again. That is why when ever the opportunity presents itself, I try to teach myself to do exactly that. A few years ago, I found myself sitting in my dorm room at Norwich University with the overwhelming urge to run again. I sat at my computer trying to picture myself jogging on the side of the road like I saw people doing sometimes; I wondered what it would be like. Because Norwich is a military school, there were always people around me running either on campus, around the indoor track, or all through the town. One Sunday in March, I decided that I would try running. It was the Sunday before classes started, most people had not returned to campus from Spring Break. Because I live so close to the school, I returned quite early, and I saw this as the perfect opportunity to find myself at the indoor track. Nobody was there except me, so I did not have to be embarrassed. I am quite self conscious about the way that I walk, so I could only imagine how I looked attempting to run. I found the most exhilarating song on my MP3 player and turned up the volume. At first all I did was stand there. I looked around the track and tried to picture myself. I so diligently concentrated on the image of myself running (without limping) that I could almost see myself doing so on the other side of the track. With that image in my head I got my legs started. The pace was slow at first, but eventually I found a steady speed. I kept the image of myself in mind, learning to ignore the thudding that was caused by my brace, and “flew” up one side of the track. I tried to remember the track meet I went to when I was in high school, in order to cheer on my sister. At that meet there was a runner for one of the other teams who was disabled. He had perhaps Downs syndrome, and even though he was the last one to finish, everyone was cheering him on! I pictured the moment when he finished and handed off the baton—he looked so proud of himself! I thought that maybe I could take on his confidence, and I pictured a crowd cheering for me. He also had a kind of “limp”, but he didn’t seem to care! Picturing the smile on his face made me excited that I was giving this running thing a try. Because the track was meant for both walkers and runners, the corners were especially tricky to get around. They were not completely flat in some spots, so I decided that to be safe, I would only run until I reached one of the corners. In these places I would walk, but then proceed up the other side of the track. After I finished running down the other side of the track, I stopped to acknowledge what I had done. I completed one lap! I decided that in celebration of my accomplishment, I would dance around for awhile. Because the track was up near the ceiling, with the basketball court beneath it, I decided to pretend that I was on a boat. I reached over the edge singing the song from Titanic and being my silly self. I pranced around laughing and pretending that the boat was sinking, and saying “O jack! I’ll never let go!” in my most dramatic voice. No one was there, I could act however I wanted to! No sooner did I think about the fact that I was all alone up there, when a cadet had joined me on the track. I was so excited and happy to have “run” a lap around the track for the first time since my brain surgery that I didn’t care! I hadn’t the desire to do anymore running, I had satisfied the urge that brought be there in the first place. I just wanted to leave and tell everyone! I was so happy I felt like proclaiming LOOK WHAT I DID!!!!!!!!!!!!!!!!

November 2008

It is Thanksgiving time again, which is an extra special time for me personally. It was fourteen years ago at about this time that I underwent my hemispherectomy. It’s hard to believe that it has been so long, but I have discovered a lot of handy gadgets and tricks to help me out in life, and I would be honored to share with everyone!

There are a lot of things that exist out there that make living with one hand so much easier. One of the best things I have found has got to be dycem, it comes in handy for many things because it holds things still. That way, when I am trying to stir pancake batter (I love pancakes!), the bowl does not go flying across the room and make a big mess! I have also found a one handed can opener that I have had for many many years. It is a Black and Decker cordless can opener. It is easy to use and when it was new it had a magnet on it to lift the lid. Nowadays I believe that they have “hands free” can openers, but I still like my older one.

There are many catalogues in existence that are not meant specifically for adaptive household gear, but they have helpful things in them. For example I was able to find a stand that holds my hair dryer so I can style my hair and also I fond a lotion applier that has a long handle so I can get my back. The most recent gadget I found is one that opens soup containers since the metal tabs are so popular nowadays. I put a piece of dycem between my legs so that the container holds still, and I use my soup opening device to get the cans open. It is a simple tool that basically looks like Captain Hook’s hook, but it has a slit at the end of it. These gadgets are hard to describe, but I would be happy to send pictures or catalogue information to anyone. I hope I helped!