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


Living with Skeleton / Living with MS

Day 04    Sunday, December 13, 2009

20091212 Blog Photo 001 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. 20091212 Blog Photo 002 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. 20091212 Blog Photo 003It’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.20091212 Blog Photo 00420091212 Blog Photo 005 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? 20091213 Blog Photo 006

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. 20091213 Blog Photo 007 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!

3 days left! Read Day 5.