My Story

When I first got out of the hospital we went to Mimi’s (Level 3) to stay close to the Mother Ship. Here is the system of levels we developed:

• Level 4 = checked into the hospital at Stanford
• Level 3 = staying at Mimi’s, a 30 minute drive from Stanford
• Level 2 = staying in Auburn with Mom and Dad, a 3 hour drive from Stanford
• Level 1 = back to my house and job in Montana with Mom and Dad
• Level 0 = back to my life in Montana alone, with my new brain

After three weeks at Level 4, it felt good to be at Level 3. Mom cooked dinner, we ate, and then we read some stories she found on the internet. People with A.D.E.M wrote them. They were stories of their experiences with this disease. They were hilarious. They also fell off toilets, spoke in funny voices, walked like clowns, got scrubbed by their Moms in the bathtub, and had numbness and strange banding sensations. I laughed so hard that I was inspired to write my own story.
In reading the stories we noticed many similarities between my case and others, but there were also differences. The symptoms were very similar, but the timelines were different. Most people were hospitalized within hours to weeks of the first signs of a problem because symptoms came on fast and strong. Some went into a coma. It took four months before I was hospitalized, and my decline had been gradual. I seemed to have a rare case of a rare disease.
I had never written a story, only letters and papers for college classes. I always had an aversion to writing papers, so the idea of writing my story seemed unnatural. But I felt it was a good story and I would figure out how to do it. I figured I could apply my knowledge of art and working in many media to writing my story. My story was going to be like the others Mom found on the internet, a few pages long.

Back to the Emergency Department

We went in in the morning, and we were there until 1:00 am. We had our own room with a TV. We watched it and changed the channel around. While we waited to see doctors, we watched the Daily Show and Cheech and Chong’s Nice Dreams. We are fans of Cheech and Chong, but I do not recommend Nice Dreams.
I had developed an infection on my wrist at the IV site and this was cleaned out and treated with IV antibiotics. The cardiologist came down, the neurologists came down.
Dr. Handsome had finished his time at Stanford, and now there was a new neurologist in the crew: Dr. Handsome #2. He looked at my brain through my eyeball and said my brain tissue looked “healthy and beautiful.” “Thanks!” He told my Mom that he was surprised at how good I looked. Mom said, “and why is that?” My case had just been presented at the “grand rounds” two hours earlier, so he was familiar with what had happened to me. “Because her case is so…complicated.” He didn’t want to say, “because her brain is so f***ed up” to my Mom. This was not the first time that a doctor who saw my MRI was surprised to see that I was conscious. I think he expected Terry Schaivo.
Dr. Handsome #2 told my Mom that in his experience, people who look well recover the best. All of my systems were functioning normally; I just had brain lesions. He also said that recovery, in these types of diseases, is not linear. There will be setbacks.
Over the course of the day in the emergency room, I was feeling better. My heart rate was coming up. Dad said I just needed to shake it off. “Shake it off.” He was right. I just needed to shake it off. I seemed stable, so they sent us home. We went back to Mimi’s.
We stayed at Mimi’s the next day, afraid to get to far from the Mother Ship. I was feeling better than the day before, gaining strength although still quite weak, and my heart seemed to be getting back to normal (especially since the Solumedrol treatment was finished) so we decided to go back to Auburn. I had been in the hospital for almost three weeks by the time we got home.

Side Effects and New Effects

I went home with instruction to taper off the Solumedrol with prednisone (a much weaker steroid). Steroids are never supposed to be stopped abruptly, there is always supposed to be a taper. The Solumedrol treatment had been 1000 milligrams per day for five days. The prednisone started at 60 milligrams and tapered off over the course of ten days. It turned out that I had a very long, slow taper. I was on 60 milligrams for months, and I wasn't completely off the prednisone for nine months.
I was having a hard time with the taper. It was too fast. Mom called the on-call neurologist at Stanford. She told him the story and how I wasn’t doing well on 20 mg of steroids. He said to try 30 milligrams. Mom said she didn’t think that would help. “Okay, try 60.” Okay. Not a lot is known about this type of disease, and the doctors at Stanford listened to us so we could adjust the treatment as necessary. I was back up to 60 milligrams of Prednisone.
During the fast steroid taper my vision worsened. It was clear, but I had a lot of trouble tracking moving objects. Not a lot of trouble, I couldn’t track at all. If I looked out of the window as we drove, my brain couldn’t keep up with what my eyes were seeing. Everything flew by in a blur, it is called nystagmus. When I walked outside, it was like watching a cartoon with a giant, his steps pounding the Earth. With each step the giant takes the Earth shakes up and down. In my case, the visual effect of the cartoon giant was the same, but my brain shook instead of the Earth as it tried to keep up with the input. Here’s another way to describe it. It’s like watching a movie on the big screen with real fast action, like a car chase. Everything is going so fast, your eyes can’t keep up. In addition to the speed, imagine the camera moving over a bumpy surface, like cobblestones.
With my vision problems, I asked Dad to impersonate my walking so I could see how funny I looked. He stood with his head jutting forward and walked fairly normally but his upper body was very stiff and his head held still. I had no idea this was what I looked like, but I knew why I was doing it. I was trying to hold my head still to compensate for my jumpy vision.
At this time, I also experienced some new sensations on my face. It felt as though I had a thin moustache. There was no hair – it was just a sensation. Like a milk moustache that needed to be washed off. There were also sensations of spots by my left eye and on my chin that also felt like they needed to be washed off. I had a feeling of wet circles around my eyes, my eyelids felt wet. My left hand became more numb, not so much numb but tingly and with decreased sensation. While the spots by my eye and chin disappeared with the increase in steroids, the other effects remained for months. These sensations sound odd and bothersome, but I just got used to them and ignored them.
The steroids affected my appetite. I was hungry, real hungry. I ate a lot and I ate fast. I craved meat in massive quantities. I ate most of a corned beef in two days. I ate big chunks of salami and big chunks of cheese. I was obsessed with food. Every topic of discussion eventually came around to food. I planned meals two or three days in advance. I went grocery shopping with Mom to make sure we had enough food and so I could pick out what I wanted to eat. I imagined a sandwich called The Convoy. This would be several submarine sandwiches in a line ready to enter the tunnel of my mouth:

(Yeah, breaker one-nine, this here's the Rubber Duck, you got a copy on me Pigpen? C'mon.)

(Ah yeah, ten-four Pigpen, for sure, for sure. By golly it's clean clear to Flagtown. C'mon.)

(Yeah, that's a big ten-four there Pigpen. Yeah, we definitely got the front door good buddy. Mercy sakes alive, looks like we got us a convoy)

I drank a lot of diet sodas for two reasons: I was really thirsty and because I was not supposed to have sugar since steroids affect blood sugar. If my blood sugar got high I would have to get an insulin shot. Peter and Mimi were disgusted with my love of Safeway brand diet black cherry soda and cream soda, but that didn’t stop me. I loved those sodas. I wouldn’t leave the house without three or four of them in my bag along with some snacks.
Part of the reason I was so thirsty all the time was because I was really hot and sweaty. My body was running a lot hotter than usual. It was hard to discern which of these symptoms were due to the disease and which were side-effects of the steroids. Here is a list of sensations I experienced at that time:

• Nystagmus – the already mentioned vision disturbances.
• The already mentioned facial sensations.
• The sensations of a ring on my finger that started before I was treated still remained. I also had a similar sensation on my left middle toes.
• The tip of my tongue was still numb.
• I was sweaty, real sweaty. Just plain hot.
• Sweaty hands, cold feet.
• Awake early. Steroids keep you up. I was taking sleeping pills, but I still woke up at 4 am every morning. I sat in bed and started writing my story in notebooks or knitted frantically.
• Increased energy, I was practically in a frenzy all the time.
• Still the same problems with balance. I was using my walker.
• Hair loss on head. I didn’t have any bald spots, but surprising amounts of hair were in the bathtub drain.
• The only way to describe it was a feeling of light-headedness below the knees.
• Fits of depression.
• I spent a lot of time lying still to calm my jumpy vision.
• With my high energy, I was walking around fast. It was hard to slow down.

At about this time, Mom and Dad decided that it would be safe enough to move me back upstairs. I had been using their bedroom for months. Dad installed a railing on the stairs for me. Being allowed to use the stairs was a big step. Peter teased me over the phone in his patronizing voice, “Good Neen, improving.”