A performance-based fundraising campaign for the Multiple Sclerosis Society of Portland, Oregon, Inc.

Endure

Living with Skeleton / Living with MS

Day 02    Friday, December 11, 2009

Last night I slept with the skeleton attached in a chair beside the bed. At the beginning of the project, I decided that that only time I’d take the rope off was to change clothes. Other than that the skeleton will remain attached at all times 24/7 until the project ends at 5pm on December 17th. As I mentioned yesterday, the leg on the skeleton fell off. I woke up at 5:30am to get ready and eat breakfast because I had a 6:30am appointment to meet with Jerry (who also reinforced the skeleton before the campaign started) to fix the leg on the skeleton. The screw came out of the joint completely. Jerry drilled the hole deeper and put a larger screw in to hold it better. That’s Jerry there with the saw performing the operation. Thanks Jerry!

After the leg was fixed, I drove to school trying to think how I’d carry the skeleton around all day. It’s heavy and if I carry it for the whole day, my back starts to hurt. I kept thinking of wheels and then realized that the chairs in the computer lab all had wheels. I commandeered one for the morning. It worked so well until someone said “Do you just cheat and use a rolly chair?” Ugh! I laughed in frustration. The reality of the situation is that 30 lbs are distributed unevenly across a 5”5’ frame that I have to juggle. If I carry it, I can’t use my hands to hold anything else or really open doors without a struggle. 20091211 Blog Entries 003

I’ve started brainstorming on different ways of bearing the burden. I still had the skeleton stand and I really wanted to try using that. I asked a sculpture friend if she knew the tech in the 3D building at school who might know how to put together a stand to wheel it around on? She offered to do it she but then welding was involved so she spoke to her professor. Then, she walked all the way to my car to get it and brought it back to school for me. She told me to go ask the tech nicely to help. He’d be able to make the hook. Thanks Laura! I went to the tech to ask for help and he totally made the stand! It was crazy. He just got some scrap metal and put it together. It’s so awesome! Though it does take some finesse to get it to work. Thanks Kent!20091211 Blog Entries 00620091211 Blog Entries 005

I then went to grab lunch. To get out of the building, since there’s no wheelchair access, I was told to leave by the side door on the other side of the building. I thought um, no thanks and honestly, I know I’m impatient. I hate having to wait or go around and so I just dragged the whole thing down the front stairs. This is definitely not a sustainable way to walking around with a skeleton. I went to the local grocery store to grab food. It was already late for lunch and I had been putting off eating, as it seemed like too much effort to go and get some food. I got there grabbed some food and a few people made comments about “my boyfriend.”

I wanted to eat there but felt too self-conscious and like a spectacle so I went back to school. I sat down to eat and just did not have the force to get up and move again. Moving about is a huge problem and I dread it. Once I’m in a place, its okay, I can forget that I’m attached to the skeleton. 20091211 Blog Entries 002

My friend and I went to my older sister, Elizabeth’s for dinner with her and my nieces. She was diagnosed with MS years back. We sat around and ate some catfish tacos, chatted and read some books to my nieces. Zoey, the two and a half year old kept asking me about the skeleton. “But why are you tied to it?” I kept telling her that it was for an art project. Obviously, that wasn’t enough. I looked to my sister for direction on how to explain. She looked at her daughter and said, “You know how mommy has MS? Titi (my niece’s nickname for me) is raising money so that hopefully other people with MS don’t have to be sick anymore.” My niece sat there and tentatively touched the skeleton.

My roommate called, a water pipe in the basement burst so she turned off the water for the house. I ended up having to go to my friends to take a shower. After that I was spent. The thought of having to move anymore made me want to cry! My friend was so nice to me and made me sit for a little bit before I went home. I am so grateful for my friends and the community I’m a part of. I can’t imagine trying to do this alone. 20091211 Blog Entries 004


Still interested? Read Day 3.

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