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


Living with Skeleton / Living with MS

Day 03    Saturday, December 12, 2009

This morning I woke up and tried to take it easy. The water from the burst pipe was still not fixed so I tried to just focus on quickly doing some homework and then leaving the house early for the day. Everything seemed to take longer than the day before. It appears the novelty has worn off. In the morning, I had a chair with wheels that I’ve started to put the skeleton on to get around. It eases the burden on my back a ton. However, it moves like its got hair for wheels and seems to get caught up on everything. I won’t complain too much as I’m grateful I kept it since I’ve been planning to throw it out since last May. Procrastination does pay. I had breakfast and tea and tried to focus on work and ignore the fact that I had to go to the bathroom. Finally, I couldn’t wait so I threw my coat on over my pajamas and stormed out of the house pissed off to go find a bathroom. I went to the local grocery store so that I could get water at the same time. Being tied to the skeleton is making me smarter. I’m learning to group similar tasks and errands to minimize how many times I have to get in and out of the car. Getting in and out of the car is now my least favorite thing in the world. I would rather shave my legs 50 times a day than get in and out of the car because at least I don’t have to leave the house!

I got to the grocery store and pulled the skeleton out and walked it. It’s 10:00am Saturday morning and some people look at me and smile while others completely ignore me and walk coldly by. I hurry to the bathroom; the skeleton’s legs keep knocking my knees. I’m almost there when a man with his daughter in a grocery cart stops me. He tells his daughter to look at the skeleton. I stand and smile. She looks and wiggles in the cart. I give him a card and a quick five-second debriefing on the situation before I race into the bathroom and lock the door. I have to jockey the skeleton down so that I can get to the toilet. I sighed and just laid my head on the toilet paper dispenser exhausted. The skeleton just rested on the floor.

I just want to make a quick side note about skeletons and gender. Yes, despite the time and proximity I have with the skeleton I still don’t know how to tell. I’ve had a number of people ask me and for the record, I haven’t researched it and the answer is still I don’t know. I called a business on the phone to ask for a donation and the woman started referring to the skeleton as a “he.” Then she started apologizing profusely for assuming it was a male and using both pronouns referring to my skeleton as he/she.

I finished my business and went to buy some water. In the water aisle, an employee burst out laughing and said, “You might want to feed him.” I laughed, ecstatic that I had gotten to go the bathroom and told him about the project. It sobered him a little and he offered to help carry something for me. I declined and thanked him. The people at checkout laughed and asked about the skeleton. I told them about the project and the cashier just stared at me in awe that it was going to last a week.

I picked up the skeleton by the rib cage, which is proving to be the easiest way to carry it around, that and the pubic bone and went to my car. I started the project with strapping the skeleton with a seat belt in the front seat. Then I realized it was easier to just chuck it in the backseat. This chucking behavior may be the reason why the skeleton lost both arms today and now I have to pay another early morning visit to Jerry. I’m wondering how many operations this skeleton is going need. Is it even going to make it to the end of the week or will I have to start carrying it around in a box?

I went home and tried to get ready to leave again. I tried to find some non-perishable food and made some lunch, which was the easiest thing I could make: eggs and rice pasta. I was still in my pajamas and I contemplated whether I wanted to bother changing or putting on make-up. I just didn’t care. I kept thinking that people would understand and excuse me; I mean I’m carrying around a 30 lb skeleton. I thought that for a minute and then scolded myself for such a lame excuse. I realized that I couldn’t let the skeleton be an excuse for not taking care of myself or for not leaving the house and for basically not living my life. Attached or not attached, I still want to live and to live well. I had planned a somewhat relaxed day for myself anticipating being slowed down by the skeleton and then I thought, ah, screw it; I’m just going to do what I want. I don’t care if it hurts or if it’s hard.

I got dressed, put on some make-up and ate lunch. Then I went to the car, chucked the skeleton in back and left. 20091212 Blog Entries 006 I went to the Multiple Sclerosis Society Christmas Party. I hung out and talked to some of the members. 20091212 Blog Entries 003 Then I spoke about the project and the members were so great, they asked me about my sister and how she was doing. 20091212 Blog Entries 001 Then I interviewed two other members for the blog site and left. Everybody was so great and supportive. I felt very welcome and at home. I honestly wish there was more I could. 20091212 Blog Entries 002

After I left I headed directly to an Association International du Film d'Animation (International Association of Animated Film) ASIFA Show & Tell event. I asked Mike, the president, if it was okay to show up with the skeleton and he was completely okay with it. I started an Animation Club at PNCA and we all made an animation together using old condiments from our fridge. I showed that there and some other stop motion shorts I had made. I was so happy to be watching all the animations that others were working on. 20091212 Blog Entries 004 After that I went to the bank and then to grab dinner. Getting into the ATM took a bit of juggling, but a kind woman took my picture at that machine. 20091212 Blog Entries 005 I deposited my check and then ate my dinner in the car. It was the easiest way to eat dinner. Climbing into my car, I had someone stop and ask me what I did to “my boyfriend.” After that I headed to the bar.

One of my roommates is moving out so we’re looking for another one. We went for a meet and greet at the bar. I asked my roommate to warn her that I’d be attached. We chatted for an hour. It was pleasant. The woman working the bar was kind and interested in the skeleton.

I went to school to finish up some homework and then to drop some videos off at the webmaster, Payton’s place. We got the video uploaded and then half the pelvic bone and the leg fell off. He handed it to me as I left. To be perfectly honest, I feel relieved. I needed a little break from the weight and well the skeleton is much easy to carry minus 2 arms and a leg. I’m still cutting up my hands a lot on the metal pieces that hold it together and its taking a toll on my clothes which it snags almost every time I pick the skeleton up.

I’m feeling better adjusted today. I still feel tired but I no longer feel panicked about trying to find the best way to carry it. The struggle to find the perfect way is over. Now I just carry it.

4 days left! Read Day 4.