Big News

Here’s why I broke into tears when Herb asked if I ever found myself in despair. It was evening, Dad and Mimi had left for the day. I was sitting on my hospital bed when my least favorite resident came down to the room. I’m sure she is a good doctor; she’s just cold and serious. She said that there was a possibility that I could have a brain tumor. “Wouldn’t that have shown up on the MRI,” I asked. “It could be a diffuse kind of tumor,” she said. We talked for a minute or two more, but I can’t remember what about. She left.
I sat still for a moment and then I started to panic. I called Mom, busy. I called Mimi. I don’t know how she understood my crying voice, but she said she would be right there. On the drive up she called the nurses station to have my nurse check on me. When she got to the hospital she went upstairs to find that doctor. And she was mad. She thought she shouldn’t have given me the news when I was alone. Mimi chewed her out eyeball to eyeball and for that she will always be my hero.
While walking home from the bus stop one day after school, I almost got kidnapped. I was around ten years old walking along the two lane road when a pick-up truck with two men in it slowed and the driver yelled at me, “STAY THERE!” I stood still for a couple of seconds while I saw them looking for a place to turn around. I stood and then I ran and turned up our dirt road and kept running. The truck turned up our road and followed me. And then they stopped and turned around. I made it home safe and told Mom. I remember her quietness. This is the kind of panic that comes with an unanticipated event. Would I be able to escape again?
When I was in college, I remember riding my bike along a country road and I saw a dead snake. Its body formed the shape of a question mark?

Wipe Your Own Butt

Due to the ataxia, I was not allowed to do any walking, standing or transferring from the wheelchair alone. Each time I had to go to the bathroom, a nurse or nursing assistant had to be there while I transferred from the chair to the toilet. Then I pulled the nurse-call string in the bathroom so someone would be there while I pulled up the pants and transferred back to the wheelchair.
One time, the nursing assistant came in before I was ready to transfer. He wiped my butt for me. While I was a bit surprised I thought, “Hey Neen, why wipe your own butt when you can have someone do it for you?”
When I told this story to my cousin Caitlin, she was excited. “THAT’S WHAT I WANT TO DO! I can be the asswipe.” She held her wrist near her mouth and spoke into her sleeve like James Bond, “Caitlin. We have a number two.”

The Scrapbook

I am always working on some kind of art project. I don’t think I’ve ever been without a project. While this illness was a project in itself, in C1 I met with a recreational therapist. She had the supplies. She talked to me and I think she was trying to say I should make a project about my feelings concerning this illness and the hospital. This process is probably very helpful for many people, but I wasn’t especially suffering, I didn’t have a lot of woe and torment about my situation. Weird, but true. As a seasoned art project maker (and not a person who makes projects about feelings) I chose the blank scrapbook to document my stay and fill it with hospital stuff. I enjoyed working on it every day, and after I left the hospital I got more scrapbooks, filled them up and took them with me wherever I went. Maybe making those was therapeutic for me. I took notes in there too, the writing is barely legible.
Here are a few things that went in:

• Counts of how many spinal taps, MRIs, IV holes, blood draws, CAT scans, X-rays, sonograms, treatments and medications (in detail with doses), hospital bracelets and EKGs I had.
• Fodder from the meal trays: menus, empty (eaten) packages (sugar, saltine cracker, jelly, butter and tea packets. Yogurt and juice lids. The empty RESOURCE “medical food nutritional supplement” juice box.
• My straw collection. On every meal tray I got at least one straw with a maximum of three. With three meals a day and three weeks I built up a nice collection.
• Hospital garbage. I asked the nurses and doctors for all of the packaging of things used on me that was going to be thrown away. I liked the packaging because they have directions and warnings.
• Parking receipts from Dad visiting every day.
• An IV that I pulled out myself because I knew I wouldn’t be allowed to keep it because they were always thrown in the biohazard waste bin.
• Bloody Band-Aids and gauze.
• Rehab schedules. Each night they posted the times I would be meeting with the therapists the following day.
• The cover of the scrapbook has a FALL PRECAUTIONS sticker, a hospital bracelet, a Band-Aid and the dates of my stay in Hotel Stanford.

It's not the most sanitary scrapbook you've ever seen.