I’m in a wheelchair, but my legs work

Have you ever seen someone in a wheelchair who paddles around with their feet instead of using their arms? Do you question whether or not they need a wheelchair since they seem to have the use of their legs? NO! I never did, I never even thought about how it might look until it happened to me. Nobody ever questions the reasons people are in a wheelchair because everyone assumes that nobody wants to be in a wheelchair. Many people are uncomfortable around people in wheelchairs. This fact becomes much more obvious when you are the one in the wheelchair.
I only used the wheelchair when we left the house and went into the real world. And, of course, I say “we” because I never went out alone. I got excited to go on an outing because I didn’t get to do it often. I especially liked going out with Pete. He would push me real fast, and we cooperated around sharp turns with me pulling the brake at the last second to turn and then we would almost wreck. He loaded the chair into the back of the truck and we went into stores. All the time I was sick we never got a handicapped placard for the blue parking spaces. We could have used it.
It’s a lot of work to get around in a chair with your arms, and my arms weren’t that strong since I didn’t use the chair often. So I paddled all over stores using my feet. One day it dawned on me that it was odd to be in a wheelchair with working legs. Pete and I laughed about that one even though we knew I couldn’t stand alone without falling.
People really feel bad for you if you are in a chair. It didn’t bother me, but that may have been because I felt it was temporary. Also, I talk to strangers, so people in public places encountered a cheerful, enthusiastic person desperate for conversation with others (not that I was tired of talking to family members – it is just nice to have some variety). Peter took me out to run some errands one day. I was crazy to get out of the house. I had cabin fever. I was completely full of energy, and I madly paddled from here to there in my chair with my feet.
On one outing with Peter I received coupons in two stores from two separate strangers. One was 20% off the purchase and the other was buy one something, get one free something. The coupons were due to the chair. People are nicer, more polite and talkative, and give coupons to cheerful disabled people. I liked the chair because I liked the nice world that followed me around. I was insulated from the real world like the Bubble Boy.

Physical Therapy

When I got out of Stanford hospital, I returned to Bonnie for physical therapy in Auburn. The first visit was about two weeks after I got home to Auburn from the Mother Ship. I went in the wheelchair and brought the walker. She was very impressed with how much better I was. She even had me go up and down the five stairs in the “gym.” She said that the next time I saw her we were going to get rid of the wheelchair and try a cane.
I was very excited about the prospect of using a cane, although the walker was very good. I had Mom take me to the Goodwill before the next appointment to get a cane. It was the classic wooden cane with a curved handle and a rubber tip, five dollars.
I brought it to the appointment, and Bonnie figured out the right height for me and sawed the bottom of the cane off. She taught me how to use it. The cane is held in the hand opposite your weak side (my right hand). It moves forward with your weaker side mimicking the natural movement of walking which I seemed to have lost. There is support from the cane when you are balancing on your weaker side. The cane also helps restore the flow of arm swinging while walking. I walked with stiff arms at my side or out in front of me, bent at the elbows. My hands were usually held in fists. It looked very stiff and unnatural, like a robot. I had to relearn to walk and relearn the rhythm that makes it feel natural. Since I learned to walk with a cane, I noticed that nearly all movie and television actors use one improperly. It is generally held in the wrong hand.
I asked Bonnie to impersonate my walking. She stood very stiff and upright. Her right leg moved forward in a natural walking motion, but the left foot was held at a right angle and just barely cleared the floor. She had a bit of a limp because her left side couldn’t walk properly. I laughed at Bonnie impersonating me.
She wrote out notes for me to practice: “Stand with right leg forward, hips forward, letting left leg trail behind you. Let left knee bend and bring leg forward by slightly flexing hip, letting heel strike first.”

The Follow-up Appointment

The time between getting home from the hospital and having the first follow-up appointment was uncertain. Although I was showing signs of improvement in those weeks, I expected I would be given another course of treatment, either IVIg or Solumedrol when we returned for the follow-up. Before we left for the appointment, I packed enough things for a week in case they wanted to check me back in or give me outpatient treatment.
As planned, I wore the T-shirt from the Salvation Army to my first follow-up appointment. It says “Don’t Worry! I’m Within 2 Standard Deviations of Normal.” When I found this shirt on the rack, I couldn’t believe my luck. The shirt was perfect for me because I probably wasn’t within the 2 standard deviation limit of normal. Dr. Yesno recognized this and showed me where I was on the bell-shaped curve pictured on the shirt – way over by the wall in the examination room.
We met with Dr. Plum (I knew her from inpatient neurology); she examined me and asked about changes. She read through and answered our long list of questions. I asked to see the MRI, and she brought it up on the computer. There were a bunch of big wispy white shapes within the gray outline of my brain. We looked at several “sequences” that showed a series of brain cross-sections. In this way, the lesions become larger and then smaller as we progressed through the images. The sequences ran from the top of the head down toward the chin or from ear to ear.
When Dr. Yesno came in, he said that I was atypical of every possibility and they no longer thought I had A.D.E.M., but they didn’t know what it was. I asked if MS was still a possibility: “Yes, but the lesions are not characteristic and the symptoms came on too quickly.” What about a tumor? He didn’t want to answer. A brain biopsy could be done, but it is a very hit or miss process because such a small amount of brain tissue is taken. If an unaffected or inactive area is sampled, results are inconclusive. Since I seemed somewhat better, there was no reason to take the risks associated with a brain biopsy. I asked for the percent chance of it being a tumor, “I’m not going to do that.” When I first met Dr. Yesno in August he had said that they were going to take care of me until I was better. He should have added “or dead” onto the end of his promise. It was decided to do another MRI and follow-up in a month, and that I was to taper off of the steroids by five milligrams per month. I was on 20 milligrams at that time, so that meant about three more months of taking steroids. Dr. Yesno: “As much as we hate to use steroids, it is worse to not use them.” “Sounds good,” I told him.
Mom didn’t go to this appointment because she had to work. When I told her that they didn’t think it was A.D.E.M. but they didn’t know what it was, she said, “Neen, you invented your own disease!”