Photo with Kirk 1995 ..
In 2004 I had another CVA with evidence to frontal /parietal. The sequelae this time, homonymous hemianopsia, failed to rectify itself at all. Field tests from 2004 to present show no gain despite creative mirror exercises. However, only having to process half the world has helped me considerably.
What Easter Camp did for me:
It was the only place I could go that gave me a sense of Independence. There was the security that my support people were there. I didn’t have to think about when, how, and what I was going to eat. If I needed to crash my bed was right there and it was perfectly normal to take a break at any time. The activities were too much for me to handle. It didn’t matter because what I missed the most since my stroke was the wilderness. There is a trail within the camp grounds with a little creek. My service dog and I hung out in the forest and sat on the woodpile taking in all the wonderful smells. I felt normal.
Everyone had different disabilities and all had fun. It was interesting to watch and learn different coping skills. During the dance and funny money casino auction I usually spent time in our house lounge with an Aphasic or Cognitive /Executive challenged turtle like me. It felt really special to be able to communicate with my new friend just by taking the time to figure it out at our own speed with no distractions. It meant very much to me and I wonder what it is like for them.?
Prior to my stroke in 2004 I could not tolerate movement on the screen. I often had a blanket over the television. I often had to ask people to sit on their hands and speak slower. A friend tried to give me a black and white laptop. It was barely set up and I was on the ground holding my head saying, "Leave and take it away”. My days were spent watching and working with my new dog Gage (and picking clover).
Actually, it’s not only my last stroke that helped me. It started with Gage. I think in the beginning I was trying too hard to be the old person. I didn’t have to bend down or move as much because Gage did it all. I was also trying behavior modification with short rides. Maybe we need to back off once in a while and take a turtle break. Gage showed me that we are at our best when we are happy and having fun. We need motivation to progress and learning has to be fun. Otherwise it’s just actions. Dogs are so sensitive we can do more harm if not in the right space. My stroke symptoms are similar. It’s all about timing. We knew neurons that fire together wire together before we heard it.
I do believe not having to process half of the world has also helped. Finally in about 2002-3 I got an Apple ibook. The problem was it didn’t come with a manual. There’s no way I could take a course. I was told it was user friendly and it was all on the internet. "What’s an Internet?” Correspondence doesn’t work when you don’t know the lingo. Then I would slam the lid down if it moved too much. Then I broke it and got a PC Learning how to customize it was priority.. Then it started to make sense. Taking on little projects like membership databases and learning formulas to make spreadsheets sparked my interest, allowed me to create something of value, and there wasn’t a lot of movement on the screen..
Pre stroke, I was an extemely independent person and packed a lot into my 35 years. After stroke, my confidence and self esteem were flattened. I was terrified to go to Squamish Easter Camp. It was my stepping stone to reintegration. and I have lifelong friends who get me. It's hard to explain the benefits in my case. I was often ill. If I wasn't lying down I was in the forest. I didn't attend any daytime activities. The evenings I spent at the puzzle table. This was the story. Who would have thought that it would lead me into the new story of BLAST