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


Living with Skeleton / Living with MS

Day 06    Tuesday, December 15, 2009

Last night I really enjoyed brushing my teeth. I marveled at how pleasurable it was and I was amazed at how much time I was spending brushing my teeth. Then I realized the pleasure was not necessarily in the brushing, but in the standing still and still being able to get something meaningful done. I took a shower straining to use both hands and then blew dried my hair holding the right wrist of the skeleton between my knees to give me enough rope to brush and blow dry my hair at the same time. It was quite a feat.

I was thinking this morning about how even though I’m better at handling the skeleton and my arms feel stronger, my overall energy levels keep diminishing. It’s harder to feel emotionally engaged with other people and my life as I’m just trying to use what energy I had to get ready in the morning, to eat, to get to class, to stay awake…I was making tea to take with me to school and even though I knew it wasn’t hot yet, and I like my tea hot, I poured it in anyway.

I lugged everything out to the car and just sat there for a moment with the skeleton in the back seat and reached for the tea and took a sip. It was lukewarm and it didn’t taste good, but I drank it anyway. I drank it thinking well, this is as good as it’s going to get today and it’s enough. I just accepted that I wasn’t always going to get what I wanted how I wanted it. I no longer have that luxury since my energy is limited. I’ve also started the peculiar habit of just sitting still in my car before I actually start driving. In the car is one of the only times I’m not that aware of being attached to the skeleton as I throw it in the backseat so I can’t see it. It also saves my own back putting it in the back instead of up front. I made it to class for another final. 20091215 Blog Photos 001 Yes, I was late. I’m pretty much late to everything lately. I listened to some presentations and then attended the faculty council during lunch. 20091215 Blog Photos 002 I went back to class for more critiques which paused momentarily for a small bathroom break.

When I tell people that I’m tied to the skeleton for a week. They usually ask me do you sleep with it? Yes. Shower with it? Yes (though it stays on the outside) do you go to the bathroom with it? Yes. (in a tasteful way.) 20091215 Blog Photos 003

After class, I met with my video teacher, Stephen because I was having problems with some of my footage. 20091215 Blog Photos 004 I was praying he’d know how to fix it. He kindly stayed after his class ended to help me. The audio was terrible, sounded like a pair of noisy window wipers broke up the person’s words. I couldn’t believe it! He tried a few things and said well its unlikely but you can try another video camera. Downtrodden I went to the cage (equipment rental) to try another camera. Guess what? It worked! I was happy, grateful and excited all in same moment. I sighed. Then I asked the guy working the cage to take a picture of all the cuts on my hands that I’ve been accumulating from handling the skeleton. 20091215 Blog Photos 005 Ouch.

I ran over to the grocery store where I bought Lindt chocolate mint. It was a rash decision and a good one. I felt kind of guilty so I went to get an apple so then I could eat them together and feel good about myself. I walked over to the produce section and startled a woman next to the apples. She was like, “oh, hello.” I smiled and told her about the campaign. Then her companion said that he worked for an MS clinic in town. I have to say it’s been rather amazing how many people I’ve run into who have MS or know someone with MS. I remember reading some statistic that there are 400,000 people living with MS in the States. I think half of them live in Portland! I talked to the cashier about the project. She was way impressed and asked me if I slept with it.

I loaded the skeleton back into my car to go over to the MFA Applied Craft & Design Open Studios. 20091215 Blog Photos 006 I hung out with my friend Alexis and Leah. We talked and looked at art. Alexis kept touching the skeleton and telling me that she wanted to touch the skeleton. 20091215 Blog Photos 007We had a long conversation about possible hairpieces for it. I then loaded the skeleton back into the car to go grab dinner with them. 20091215 Blog Photos 008 We chatted while we waited for our food. After dinner, I dropped Alexis off at her house. Then I drove directly to school stopping only for traffic. I finally got to school and pulled out the skeleton to go in and its pubic bone fell apart. I carried it awkwardly into the building where I searched for a rolly chair. As soon as I plopped it down, its right arm fell off. Shit, I thought, I’m gonna have to go see Jerry. I think I might bring the stand in as well to see if he could do something about the wheel. Let me just say that I am so grateful for all the Jerrys in the world.

Almost there. Here's Day 7.