Day 07    Wednesday, December 16

Finals suck and I went pre-migraine today. The alarm didn’t go off. I woke up at 8:09am and class started at 8am. I just did the best I could; skipped breakfast and skipped the make-up. I threw on a hat and left. The skeleton’s hip is still dislocated from the tailbone so both legs are hanging from the right pubic bone. This means its hard to carry. I’m not used to carrying the weight distributed like this. I called Dr. Jerry on the way to school. He could fit me in at 11:30am. I made it to school and parked. I didn’t even bother paying for the ticket. I just hopped out and hustled it to class. I showed up 45 minutes late. I felt awful.

After that I went to Jerry’s to get the skeleton’s arm and hip bone put back on. He did something brilliant and replaced the wire with leather. The skeleton held up well with the copper coated steel but its more flexible with the leather. I like how the skeleton has all these different ways of holding it together. The biggest problem are the feet. The feet are warped. It was hard to tell how they go back together. “Amputate the foot?” Jerry asked. “I’d really like to keep it. Even if its not correct. I’d like it to stay as intact as possible.” Jerry nodded. “Okay, then duct tape.” He got some duct tape from his son, Sam. Thanks Sam! Then the feet were duct-taped together. At this point, I don’t care. I just want the skeleton to stay together. It doesn’t matter how. It doesn’t even matter for how long. It’s just going to disintegrate again. Once the feet were taped up, I took the skeleton and left. Thanks Jerry!

I was supposed to meet a friend for coffee at my school but I cancelled. I felt too tired and ill. I knew that if I didn’t go and sleep, then I would probably wind up in migraine country. I drove home and napped for a few hours and then made dinner. I got ready to go to a doctor’s appointment. I showed up there relatively on time. I’m just glad I made it. Then I headed over school to set up the 9-hour meditation that will take place in the Flux gallery at PNCA tomorrow. A man on the street looked at me and said, “Would you feed your boyfriend?” I laughed and then told him about the campaign. Then he told me that his cousin helped push through the American Disabilities Act. His cousin was even in the oval office when the Act was signed.

I made it to school and went to meet my friends, Laura and Nico who came to help set the gallery space up. Thank you Laura and Nico!

I went to go finish up some homework and another friend came to keep me company and to help out with some last minute errands. I had to go get some snacks for tomorrow at the grocery store. We got some snacks and some food and left to go get some brochures for Gary, the volunteer from MSSP, who will be at the gallery tomorrow to talk with people about MS and to collect donations.

I’m back at school now working on finals and looking really forward to just sitting for 9 hours tomorrow.

The following is information regarding the 9-hour meditation that will take place tomorrow, Thursday, December 17, 2009 from 8am–5pm.

Day 06    Tuesday, December 15

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. 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. 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.)

After class, I met with my video teacher, Stephen because I was having problems with some of my footage. 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. 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. 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. We had a long conversation about possible hairpieces for it. I then loaded the skeleton back into the car to go grab dinner with them. 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.

Day 05    Monday, December 14

Right about now I’m subsisting on chocolate. Had I only known earlier how effective this method is…I woke up this morning to get started on some more homework as its still finals week. The next-door neighbor came over to inquire about a funny smear of orange looking vomit that wound up on her windshield. I looked at it from the door and said “oh, that’s funny, that’s the same stuff in our driveway that I stepped in last night and smeared all over the clutch in my car, slippery and gross. I have no idea what it is. Honestly, I thought my roommate just puked.” While the neighbor went to go check our driveway, my roommate told me, “I thought it was your puke.” Nope, it’s not my puke and now, its time for breakfast. I wheeled the skeleton around hurrying to get ready to go to the doctor.

I made my breakfast to go, took a vitamin and made some tea and scrambled out of the house. I’m at the point of having no real delicacy in carrying the skeleton. This means I run it into walls and corners often. I drop it on the floor. I’m sick of thinking about it. Jerry did a great job fixing up the skeleton as it’s only lost 2 small bones from its foot. I go to the doctor for a check up. I must admit the skeleton sits well in a chair. I try to just breathe and relax. My phone starts vibrating. I ignore it and try to remain focused on breathing. The appointment ends and I listen to the message. It’s Lauren from Bill Bradbury’s campaign office. She says that I can interview Bill about MS. I am so grateful. I read about Bill’s story in Amelia Davis’s book, My Story: A Photographic Essay on Life with Multiple Sclerosis. After reading his story, I was really impressed by how he remains focused and committed to public service post-diagnosis. I set up a time to interview him in the late afternoon. After I scheduled the interview, I head to school for my photography studio lighting final critique. I showed up late. I’m still getting used to how long it takes to get ready and out of the house tied to the skeleton. I got there and my classmates helped me get situated. I am so grateful. Then when it was my turn to present, a couple of them helped display my print on the wall. Thanks John and Leah! They also helped take it down.

During lunch, I attended a student leadership meeting. It involves everyone on the student government and the ever so helpful student services workers who help guide and support us. We sat and talked about the semester and what we anticipate on doing next term. It’s exciting to hear about what’s going to come next. My friend, Elizabeth (and Dr. Jerry’s daughter) helped me get my lunch and then clean up afterwards. Thanks Elizabeth!

After lunch, it was back to the photography final critique. Post-lunch, I’m usually sleepy but this time I was just exhausted. I kept trying to get comfortable in a chair next to the skeleton, but really the skeleton has a cozier chair. So, I just pushed it over and tried to get comfy without falling asleep.

After class, I rushed over to Bill Bradbury’s campaign office for the interview. Bill bust out laughing when he saw me that I felt so grateful for. He has a great sense of humor. We talked for a bit and then sat down on the couch for the interview. I really appreciated Bill’s willingness to accommodate me for the video. We sat and chatted about MS and my skeleton, it was a good conversation. The video will be posted later on. Once the interview ended, I chatted with his staff while I packed up. They were all so welcoming! It was raining when I left the building and I couldn’t muster the energy to figure out a way to not get rained on and so I just accepted getting rained on. I was hungry and so I drove to get food. I started chatting with someone in line about the skeleton and MS before rushing to my car to eat before heading into the library at PNCA to work. I’ll be working here till midnight. I can hear the rain beating down on the roof as I type.

Day 04    Sunday, December 13

I was at Jerry’s this morning, 8am to get the skeleton put back together. I had a harder time of getting myself moving to get out of the house. The water was fixed and back on which I am so grateful for! I opened my fridge and had a million ideas of what I wanted to eat. Then I thought about what it took to make each one, so I had peanut butter and jelly on rice cakes. Thank God, tea is just a bag and some hot water. I went outside to get into the car and had to use both hands to pry the door open. It was frozen shut. This requires putting the skeleton down. Usually I can balance it on a knee and open the car door to reduce the amount of movements required to get the skeleton in, however this was not possible this morning especially since I had to scrap the windows. Once I got in the car and started to listen to music, I felt quite cheerful. I got to Jerry’s later than I anticipated. This is the story of my life this week.

Jerry attached both arms and the leg. Then he reconnected the heel back to the foot and the two pubic bones back together. He did this all with bolts, copper lined steel and a pair of pliers. It was pretty awesome. Thanks Dr. Jerry!

Then I got in the car to go meet some friends for breakfast. It’s the first time I’ve been in a restaurant to eat. I went in and asked to use the bathroom. They told me only one person was allowed in the bathroom at a time! Lol! I talked to everybody waiting for breakfast while my friend, Laura and I worked on putting white duct tape over the wires pieces on the skeleton that keep snagging my clothes and cutting my hands. When I mentioned it to Jerry he said, “duct tape” and then got some white duct tape from his son to help out. Duct taping the wire parts made me feel better.

There was a couple with their baby. The baby had never seen a skeleton before. This keeps happening. I’ve introduced many a baby to their first skeleton this week. Is this a good thing?

After breakfast, I was supposed to go to school to get started on my last final but instead I took a detour home to my bed for a nap. I kept waking up and resetting the alarm. Two friends called asking for help. I silently cursed them, which is kind of funny. Normally, I would just jump up and out the door but instead I just wanted to stay in bed and not think about how to get myself ready to go again. I saw the dishes and was like why can’t anyone read my mind? I need help! I’m struggling here! Just do my dishes already! Then I remembered, no one asked me to attach myself to a skeleton. This is my completely my doing. Every time I get upset or angry or turn into a cranky whiner (which happens, but usually only inside my head) I start thinking about people living with chronic illness and people living with MS. How do they do it. I think the answer is they just do. For myself, the emotions are going to happen, but I don’t have to stay there. I can have them and move on. I then felt grateful for my friends because they care about me and have been checking in with me to make sure I’m okay. I also realized that the two friends who called for help were motivating me to leave the house and to focus on what matters and not what hurts.

I went to school and one of my friends helped me get my things. I was going to try and use the stand again. I stood with it lopsided on the street, wondering what was wrong with it. Then my friend pointed out that a wheel was missing. He took it apart for me and put it back in the car. He helped me carry my stuff for a little while. Then I went to go check on my other friend. She sat with me and we talked about her work while I duct taped more of the fingers and toes of the skeleton. Again, this made me feel better.

My friend had a snack with me and then got me hot tea to help conserve my energy. I keep thinking about the “spoon theory” essay that Mike from MSSP sent to me which explains what it's like having to manage one's energy levels when they have MS. The spoons are a great metaphor for understanding the planning involved in managing MS.

I moved over to the computer lab to grab a rolly chair again. I’m so grateful we have this at PNCA! Thank you PNCA!!!! I wish I could just take it home with me! Now that the arms and leg is reattached the skeleton, all of its weight is back and difficult juggle. The chair helps to not injure my back. I’m having some pains next to my right shoulder blade. I keep thinking that I can carry the skeleton by the rib cage with one hand. Pretty impressive eh?...and completely unpractical. I’m thinking about hiring a freshman to carry the skeleton around for a day. I wonder how much I’d have to pay them…maybe I’ll just call it an internship. Great resume builder: “carried skeleton around for a day…learned how to manage weight distributed across awkward body…acquired creative problem solving skills.”

I actually had a light-hearted moment on the chair with the skeleton. I realized that I can use the rolly chair like a scooter. I plunk the skeleton down on the chair and then fold its legs up off the floor. Then I rest one knee on the seat and push with the other leg. This drastically cuts down on the time it takes to cross the building to get to the bathroom and I get to do donuts in the commons! (The commons is the big open space in the middle of PNCA, my school.) I love it! I’m totally cracking myself up here!

Day 03    Saturday, December 12

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. I went to the Multiple Sclerosis Society Christmas Party. I hung out and talked to some of the members. Then I spoke about the project and the members were so great, they asked me about my sister and how she was doing. 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.

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. 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. 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.

Day 02    Friday, December 11

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.

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!

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.

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.

Day 01    Thursday, December 10

The Endure campaign began today, Thursday, December 10, 2009 at 5:00pm. I left the skeleton in the trunk all week so that it’d be ready. At 5pm today, I just went out to the trunk got the skeleton out. I attached the skeleton with a rope to my right wrist. Then I set about constructing the skeleton stand which felt grateful to have.

However, there was already a problem. I received the skeleton stand in the mail yesterday. The idea was to wheel the skeleton around with me on the stand. When I opened the box this morning, there was only half a stand in there! I ran into my roommate in the kitchen and told her the news and she said “oh wait there’s a box outside, maybe it’s the other part of the stand.” I stood there surprised thinking how weird, why would they mail it in multiple boxes? She got it for me and I took the box and ran out the door because I was late.

I threw it in my trunk, planning on putting it together later. Later turned out to be 4:50pm. I pulled out the bottom portion and set it down on the ground and went to get the box with the other half. I pulled the box out and again thought weird, its light and there’s supposed to be a big metal pole in it. I checked the name on the box and it was addressed to my roommate from Keen shoes! It wasn’t the other half of the stand! It was a pair of shoes! *$^@%! Lol! Tomorrow, I will call the company to explain the situation. It appears that I will be carrying the skeleton from now on. I am a bit concerned as the skeleton is 5’5” and weighs 30 lbs.I picked up the skeleton and carried it inside to go finish some homework and talk to my friend, Ruth (in the red).

She took the skeleton to a table for me so that I could eat some dinner. I’m already feeling exhausted and it's only been two hours. Everything takes twice as long. I went to go borrow a photo card reader from the cage at school and it was broken. I had to pick up the skeleton and walk back there to get a new one and then come back. There’s also a lot of metal pieces sticking out of the skeleton which I’ve already started to cut my hands on. I’ll need to find some gloves to wear while carrying it. I finally got settled into do my work and I was adjusting the skeleton to ease up a little on the pull on my right wrist and one of the legs on the skeleton fell off. I called Jerry, who helped put reinforce the skeleton, for help. I’ll be meeting him at 6am tomorrow for a leg reattachment procedure. It appears that a drill will be needed…

Scroll to Top   ENDURE. December 10 – 17, 2009. Portland, Or.