Physical Therapy

Flobee’s referral helped us to get an appointment for physical therapy. We went in for physical therapy with Bonnie (a specialist in physical therapy for neurological disorders). Dad wheeled me into the hospital in a borrowed wheelchair. Bonnie showed Dad how to support me when we walk together. I wasn’t walking on my own at all by this time. She wasn’t impressed with how Dad held me up by my belt. “You guys are making me crazy,” she said.
Bonnie also tried to teach me how to use the walker that Mom had gotten at the thrift store. I had tried it out when she brought it home, but I gave up on it after a short time because my balance was so bad that I just tipped over with it. Bonnie supported me with the walker. She kept telling me, “slow down, take small steps.” “I CAN’T!” I couldn’t get my body to go slow. I had no control. I was enthusiastic about learning to use the walker and becoming more mobile. I was fast, out of control and enthusiastic. Bonnie said, “you are making me crazy, you are going down.” Physical therapists are all about preventing falls. I told Bonnie I fell down all the time, no big deal. It is a big deal if you are a physical therapist.
At the end of our session, Bonnie, Dad and I chatted about my symptoms, Flobee and Stanford (she had worked there). She thought that I should be admitted to a hospital for a short stay (a week or two) of physical therapy. Her advice on our problem with Flobee was to go to the next appointment in the wheelchair (I wouldn’t have much of a choice by that time) and get the referral to Stanford.
While we waited for the next appointment with Flobee, Mom got a call from Stanford. They could not accept the referral because Flobee had written ‘patient (self) referral’ instead of ‘doctor referral’ on the form. Mom was so mad. She called his office. He was on vacation. SABOTAGE!

Goodbye Flobee

At our final visit to Flobee (after his vacation), we showed up in the wheelchair. We had a lot of questions. He said the test results were normal and that I didn’t have MS (based on the evoked potentials). Dad asked questions that he wasn’t answering. I got frustrated with him and asked questions too. He called me maam. “That’s it,” I thought, “I’m done with him.”
We told him I was getting worse. He called it a “subjective opinion.” He didn’t believe I was getting worse. We told him about the Stanford referral and how it has to say doctor’s referral, not patient’s referral (like he didn’t know). He said he would fix the “technicality.” Since we were so concerned and demanding, he prescribed an MRI of my brain even though he thought I didn’t need one (I hadn’t had a brain MRI since June 9th in Montana).
We also requested speech therapy. Flobee said I didn’t need it. Dad and I couldn’t believe it. I was barely understandable. We said nothing. Luckily, Peter was there for that appointment. As we were leaving, Pete went back to demand the speech therapy referral. Flobee told Pete that he had 30 years of experience and he didn’t think I needed it. Somehow, Pete got the referral. We felt defeated, and we were mad about the sir and maam routine. The diagnosis on the speech referral was encephalitis. GOODBYE, FLOBEE.

The Haircut

Mom and Dad took me to Supercuts in the wheelchair. “Might as well fix what we can,” Mom said (we also whitened my teeth with whitening strips).
While I tell you about the haircut, bear in mind that I had lost the ability to control the volume of my voice and had been shouting for months without realizing it.
Mom gave them my name, and I spotted the basket of lollypops on the counter. I was obsessed with sweets, I NEEDED a sucker. “SUCKERS. GET MO ONE. NO, GET ME THE BASKET, I WANT TO PICK IT OUT.” The waiting room was full. People stared. I had embarrassed my parents, AGAIN. “GET ME A SUCKER. GET ME A SUCKER.” I NEEDED one NOW.
I got a sucker and Mom and Dad pushed me outside to wait my turn for the haircut. When I finally got to suck on the sucker, I choked on it. I couldn’t swallow the drool properly, so I choked, bad. I coughed and coughed, I couldn’t stop. Mom took the sucker. I bent over and coughed and red sugary slobber drained out of my mouth onto the ground. Mom and Dad watched in horror, Dad was ready to give me the Heimlich Maneuver. My eyes watered and I coughed. The coughing stopped.
“GIVE ME BACK MY SUCKER.”
“No.”
“PLEASE.”
“No.”

The Mother Ship

Stanford called. They received the corrected referral and gave us an appointment the following week in the outpatient neurology clinic with Dr. Jiminy Cricket, a resident.
Stanford is a fancy hospital on a fancy campus; they have a linear accelerator. Cool. They have computers in the waiting rooms so you can check your email or look up stuff on the internet. I call Stanford the Mother Ship because it is big, safe and sheltering. It is also where I go for a good probing.
Our appointment was August 22nd, about four months after I first got sick. Dr. Jiminy Cricket did the neurological exam, asked a lot of questions, and then got Dr. Yesno, his attending doctor. Dr. Yesno did parts of the neurological exam too. Jiminy said I probably had something rare, or a rare version of something common. Months later, Jiminy told me that he thought my condition had been “scary” when we first met that day. They admitted me to the hospital right then. By the time it was over and done with, I would be there for three weeks.
Mom, Dad and Mimi (she came too) were so relieved to get me admitted. Mom had tears in her eyes. As I bounced around in my happy little state of mind, I noticed the three of them in a tight little cluster, thankful, relieved, and nearly speechless. But at the same time anxious. Admission to Stanford was proof that something was very wrong. One of Mom’s friends had her church group pray that I would be admitted to Stanford. It must have worked. I felt excitement. Not so much about the potential for getting better, but because Stanford was a new place, remember I had been lying on the couch for four months. I had a touch of cabin fever and this place was new and exciting, I was happy. Everyone had been so worried about me, except me. Dr. Yesno said that the brain is an amazing organ with an incredible power to heal. He also said that they would take care of me until I was better. Those were powerful things to hear, especially for my Mom. After so many months of no help, someone was finally paying attention to us.
While we did the admission paperwork I had Mom call my boss in Miles City to tell him “I really am sick,” and let my work know what was going on. In a way, I was relieved to find out that I really had something wrong with me, maybe more than an “inflammatory process.” I had felt like a charlatan up to that time.


F3

F3 was the ward I was admitted to at Stanford. It is the ward for neurological disorders. The first room I stayed in was an epilepsy room. It was a room with a camera pointed at the one bed in the room. Mom said not to pick my nose. I settled into the hospital room with my family. I lay on the hospital bed and waited to find out what I was supposed to do. The nurse came and asked questions and took my vital signs.
Eventually, Dr. Handsome, a resident, came into our room. He had spent the last two hours reading through the medical records that Mom prepared summarizing the events of the last several months. He did the neurological exam and asked a lot of questions.
I had heard that doctors could have a nice bedside manner, but I had never experienced it, that is until I met Dr. Handsome. Talking to him was like talking to a friend. He patiently answered all of our questions and asked if we had more questions. This was the exact opposite of what we had previously experienced.
At Stanford, all of the resident doctors are young, attractive, smart and seem like they come from wealthy families. At the time I didn’t consider what a mess I must have appeared to be. I felt fine. I was a jolly and cooperative patient. I couldn’t help myself; I flirted with the cute doctors. In retrospect, this was ridiculous. I couldn’t walk, my speaking was terribly slurred, my hands crashed around, and I fell over when I sat up in bed, not to mention that nobody knew what was wrong with me and whether or not I would recover. What a catch. I didn’t care, I was having fun, and I was enjoying being in a new environment with new people.
I was receiving so much attention and I loved it. Normally I don’t deliberately draw attention to myself, but in the Mother Ship I was naturally the center of attention, I was the patient. I felt like a celebrity, so many people were fussing over me and asking me questions and telling me what I needed to do and they were concerned about me. It wasn’t like everyday life where no one pays attention to you or what you are doing.
I enjoyed chatting with the nurses, nursing assistants, transporters, and the people who brought meals or cleaned the room or took my blood. Everyone was nice, and they came from all over the world. This was a refreshing change from Miles City where most everyone is boring old white, like me. At one point, I overheard a roommate say a racist comment to her visitor. I was shocked. I couldn’t care less what color you are. I couldn’t care less about your religion. I couldn’t care less about your sexual preference. THANK YOU FOR HELPING ME!
Mom and Dad left to stay the night at Mimi’s house in San Jose. I lay in the hospital bed waiting to be taken down to the basement for a CAT scan, then a MRI. Blood was taken. In the hospital your body becomes public property. You just have to accept it, ask all the questions you want, but your body is not yours anymore. You are not able to make the best decisions for yourself, so the doctors do it. You are not able to care for yourself, so the nurses do it.
The next day, Dr. Handsome did a spinal tap. I lay in the bed and visited with my family. I was moved to a different room because an epilepsy patient came in. It was a double room. I named my roommate “Ole Stroky.” She had had a stroke and was very hard of hearing. When she pressed the “nurse call” button, she couldn’t hear the nurse speaking through the caller and asking what she needed. She just waited, and if the nurse didn’t come soon enough for her, she would start yelling. “NURSE.” “DIAPER!” “NURSE!” “DIAPER!” “DIAPER!” Sometimes I called the nurse for her. It worked out well because she was hard of hearing and I couldn’t talk quietly. She didn’t sleep much. Neither did I.
On my third day in the hospital, the attending doctor and the residents and interns made their rounds. When they came to see me, they had a diagnosis.

Houston, We Have a Diagnosis

The attending doctor said they thought it was A.D.E.M. Acute disseminated encephalomyelitis. “Never heard of it.” They said they were about 50% sure of their diagnosis. Sounds fancy. It is a rare neurological disease.
Here’s what they think happened. I got a virus, nobody knows which and will probably never know. It could have been anything. This virus stood on my blood-brain barrier and called out, “Hello Brain!” It echoed back, “Hello Brain! Hello Brain! Hello Brain! Hello Brain! Hello Brain! It crossed the blood-brain barrier and entered my brain “like a lock and key,” as Dr. Handsome explained.
Then, my immune system attacked my brain as it tried to get rid of the virus in there. This attack on my brain caused inflammation and lesions. The assault stripped myelin off of the nerves in there. Myelin is the coating on the nerves, like the plastic coating on a wire. The myelin is like an insulator that helps carry messages smoothly from the brain to the body. My body was not receiving the messages sent by my brain in a timely manner, so my coordination and motor functions were not smooth, to say the least.
A.D.E.M. is an autoimmune disease. It is related to multiple sclerosis, the two diseases are on a continuum. MS is a disease with recurrent “attacks” where new lesions are formed and symptoms are agitated. The brain can become scarred from old lesions. A.D.E.M. is mono-phasic. It is like one bad attack of MS with the formation of lesions and intense symptoms, but it only happens once, hopefully. There are also bi-phasic and poly-phasic A.D.E.M. where new lesions can form and symptoms reappear, but the diseases are not considered MS. It was thought that I had A.D.E.M., but only time can tell. It could be years before another attack.
In the days following my diagnosis, Mom did some internet research. She found that A.D.E.M. is quite rare, in fact it wasn’t even on the national rare diseases registry. We discovered that compared to other A.D.E.M. patients, my attack had not been so bad. Most people’s symptoms come on fast, in a matter of hours or days. Sometimes they go into a coma. Since they are hospitalized quickly, they are treated quickly and often recover in days to weeks.
This did not happen in my case. My symptoms built gradually over about four months before I was hospitalized. My body had a lot of time to damage my brain.
Dr. Handsome said they decided to treat me right away with something called IVIg.

IVIg

Intravenous immunoglobulin. I received this treatment each day for five days. Peetie and I talked every day on the phone. We referred it as “Intravenous DeMilo” from the album title in the movie This is Spinal Tap.
IVIg is the pooled blood plasma (antibodies) from 20,000 people. The immune system uses antibodies to fight intruders – viruses and bacteria. IVIg is intended to reboot the immune system, in my case it was supposed to stop my immune system from attacking my brain. To me it was a glass jar of clear fluid that looked to be the consistency of syrup and there were bubbles on the top as it slowly dripped into the IV. I found it comforting and haunting to have the helpful juices of 20,000 people in my veins. I thought that if I had all those people’s antibodies that I must be invincible. It costs about $10,000 per jar. I was given five jars in five days.
Early each morning of the treatment, the mosquitoes came. I called them mosquitoes because they sucked blood. They took a lot of blood. One morning the mosquito said she needed blood for 22 tests. “22 tests, does that mean 22 tubes of blood,” I asked. She said she was going to check. When she came back, she said she only needed to take 12 tubes of blood for the 22 tests. “How many is the most tubes you’ve taken for tests at one time?” I asked. “12,” she said, “you are tied.” One doctor told me I was a bit anemic, gee, I wonder why.
Each morning during the IVIg treatment, Dr. Handsome came to my room and gave me a brief neurological exam to check for improvement. There was no noticeable improvement. He asked more questions and told me the results of the tests from the previous day. One morning he told me that the CAT scan showed that I had polycystic ovaries. “Oh.” I didn’t really care. I had bigger problems at that time. Since they weren’t sure of the diagnosis, they investigated anything they could find wrong. Dr. Handsome said they were sending me to the basement for a pelvic sonogram. “That’s fine. Whatever you think.”

The Pelvic Sonogram

Each time I was taken from my room for a test, Dad became nervous about the transfer of my body. He knew how much help I needed to get around, and he was afraid I was going to get dropped or hurt. He would warn the transporter, “she has ataxia.” That was an understatement. I made everyone nervous – the nurses, the transporters, the technicians who ran the tests, anyone who had to deal with me getting around. When Dad said I was ataxic, they didn’t really get it until I had to be moved.
Part of the pelvic sonogram procedure included drinking a lot of water to fill my bladder beforehand. The sonogram had two parts: an external, full bladder part and an internal empty bladder part. They stick a probe up there so they can see the ovaries. This didn’t bother me. My problems were in the simple things and started with emptying my bladder.
After the full bladder portion, the technician left me alone with the bedpan. It sounds simple, pee in the bedpan. But I was so ataxic and the rails weren’t up on the gurney. I got some pee into the bedpan and some not into the bedpan, and as I pulled the pan out from under me I spilled it and fell off the gurney. The bedpan didn’t fall off the gurney, I DID. Three anxious nurses jumped through the curtain to check on me, “Are You Okay!?” I was fine, unhurt, but I cried anyway. We finished the sonogram, but the fall had to be reported.
Later that day when the doctors came around the attending doctor said, “I heard you had a fall.” “OH JEEZ, DOES EVERYONE HAVE TO KNOW,” I said. We all laughed. Falling in the hospital is different than falling at home, you aren’t supposed to do it. Outside every room I stayed in at Stanford was an orange sticker that read “FALL PRECAUTIONS” and pictured a stick figure falling backwards down a flight of stairs.
As it turned out, I didn’t have poly-cystic ovaries. They just looked weird on the CAT scan.

IV

I had at least a dozen IV’s put into my arms over the course of my three-week sojourn to the Mother Ship. An IV can be used to draw blood or to give intravenous drugs or fluids. One MRI technician called it a “port.” I thought that was a good name for it. An IV is only supposed to stay in for four days (or less if you pull it out because it is driving you crazy). I preferred to be stabbed again than deal with the soreness of an old IV. They got extra sore because I was always banging them into stuff.
When a new IV is going to be put in, the first thing the nurse has to do is go to the store room and collect a bunch of individually wrapped packages containing all the rigging for your arm including the clean-up gear for the blood that leaks out. A needle coated in a plastic tube is inserted into the vein, the nurse looks for “blood return” to make sure it is in the vein, the needle is removed and the plastic tube remains in the vein. The IV gadget is attached to the plastic tube. Now that it’s all hooked up, it gets flushed with saline and a sticker is put on with the date (so it won’t stay in longer than four days). Now you have a port into your body. How convenient.
During my stay in the hospital, I became stunned with all the waste created. Each piece of tubing, each connector to join pieces of tubing, the next piece of tubing, each needle with its own big fancy plastic cap, each spinal tap kit, each pill they give you, every little sterile wipee for a few drips of blood, each snack on the hospital food tray, everything comes in its own package, individually wrapped and sometimes more than once. Of course it’s all necessary for preventing infection, but it is mind boggling to think of all the empty packages, stuff used only once. I am just one patient in one hospital. Where does it go? I felt a little guilty for contributing to the pile of debris.

The Black Oil

It probably came out of the swamp or from outer space, somewhere damp and fertile with moss. It came out of its wrapper and seeped into my brain.
Dr. Handsome let me know ahead of time that an infectious disease doctor would come and ask some questions looking for the source of the virus that caused A.D.E.M. They were pretty sure the source would never be found because it had been so long since I initially got sick. My immune system had most likely dispatched the virus by this time.
She came to my bedside. She had questions. It could have been anything. Here is a list of possible exposures that we came up with:

• Herbicides – I used them at work because I work for a weed scientist.
• Pesticides – I used them at work to kill little animals.
• Game meat – In Montana, people hunt. Not so much for trophies, but for food. I ate antelope, deer, elk, moose, bear, mountain sheep, mountain goat, geese, pheasant, and probably others I’m forgetting.
• Freshwater fish – I fished with friends and ate up the fish.
• Animals I had contact with – cows, sheep, horses, prairie dogs, cats, dogs, all the game animals I was around when friends were hunting.
• Insects – mosquito bites, tick bites (I’ve had a lot of both) in CA, NV, SD, MT. I work outside, sitting on the ground, there are all kinds of tiny animals.
• Arthropod bourne viruses – The tiny animals can carry viruses.
• Soils – I spent a month processing soil samples in Sidney, MT about three months before I got sick. I had to grind up the clods in a soil grinder. The dust was in every crevice of my body, so if there was something in the soil, it could have easily gotten into me.
• Solvents – I use all kinds of nasty stuff for art projects, and there were plenty at work too.
• Metals – I was around the guys in the shop at work when they were welding.
• Dusty old sheds – I went into a lot of these at work because that is where equipment is stored. In addition to equipment there are mice, dead mice, birds, dead birds, dust, spiders and microbes. Hanta virus may have haunted me.
• Air – All the millions and billions of viruses that are floating around everyday that anyone can breathe in.

I thought of these myself:

• I eat stuff off the ground.
• I don’t use the paper seat covers in public restrooms.
• I’m an Earth creature, a mammal. As part of the animal kingdom I like to crawl around outside, roll in leaves, sniff stuff and pick stuff up.
  
  I’ve never been afraid of “germs” or lived in fear of them. I’ve never been a person who washed their hands a lot. I’m still not afraid of germs. It may have only taken one breath of air or one bite of food for this virus to get into my system. Dr. Handsome said it works like a lock and key. Somehow I happened to encounter the right key for my lock. It takes just the right virus to cross the blood brain barrier, and it could have been anything, even just a cold. I asked if I should do anything differently when I was better and back in Montana. He said no, the chances are so slim. I guess the chance of getting A.D.E.M. once is quite slim, twice would be very slim.
  How did I get this? Mom thinks it came from global warming. She aligns my disease with melting icecaps, hurricanes, El Niño, she thinks it traveled from the tropics to get into my brain. I prefer to think the virus came from outer space. Perhaps it was the Black Oil from the X-Files, an alien virus.

September

I was entered into the California Encephalitis Project by the neurologists at Stanford. Encephalitis is inflammation of the brain. When my immune system attacked my brain, it caused inflammation. So I had encephalitis in addition to the brain lesions. Apparently, encephalitis is a dangerous condition, you can die. Dr. Handsome said they were sending in some spinal fluid and two Q-Tips needed to be shoved way up my nose to get some “viral holding media.” I tried to do it myself, but I guess I didn’t get far enough up there, so Dr. Handsome had to do it. My eyes watered. The following is taken from the California Encephalitis Project website (www.ceip.us/encephalitis.htm):
Project Background
Encephalitis is a devastating neurologic condition with significant morbidity and mortality. Over 100 different infectious agents are associated with encephalitis, yet no satisfactory algorithm for testing exists. Few studies have characterized the spectrum of the disease and little is known about risk factors, long-term prognostic indicators and optimal clinical management.
Objectives of the California Encephalitis Project
The California Encephalitis Project (CEP) was initiated by the California Department of Health Services’ Viral & Rickettsial Disease Laboratory (VRDL) in collaboration with the Centers for Disease Control and Prevention (CDC) and Emerging Infections Program (EIP) to study encephalitis in California. The purpose of the project is to better understand human encephalitis, including causative agents, disease trends, risk factors, and clinical features.
Case Definition
Case patients must be hospitalized with encephalopathy (depressed or altered level of consciousness>=24 hours, lethargy, change in personality), or ataxia, AND have 1 or more of the following: fever (T>=38C), seizure(s), focal neurologic findings, CSF pleocytosis, abnormal EEG or neuroimaging study.
Coroner’s cases
Send the following tissue samples fresh-frozen: brain (cross-sections of hippocampus, right & left cerebral & cerebellear cortexes & gray matter of brain stem), liver & lung.
At least I wasn’t a fresh-frozen coroner’s case.
The IVIg seemed to help a little. I noticed two improvements. I had enough coordination to sit up and scoot my butt back in bed and I my handwriting improved slightly. It was almost legible, to me anyway. An occupational therapist had come to my bedside and demonstrated some exercises I should practice. These included turning the pages of a magazine and drawing squares, circles and triangles. I was to turn the People Magazine pages with my index finger one page at a time. I did this and I filled pages of shapes resembling squares, circles and triangles.
After five days of IVIg the doctors hadn’t seen enough improvement in my symptoms. Still, I could barely walk, had slurred speech and my coordination was so bad in my hands and arms that anything I touched was a disaster. However, I still had plenty of strength, so when I touched something or picked it up, it was crushed, knocked over, broken, dropped, smashed or spilled.
I think the doctors were expecting more rapid results because other people with A.D.E.M. generally recover quickly (in days to weeks), but they also decline more quickly (hours to weeks) than I did (four months before beaming into the Mother Ship). The doctors decided to give me a second treatment – Solumedrol. I was to be moved to C1, the rehab unit, where I would receive the treatment while I was rehabilitated. Could I be rehabilitated?
I was told that the neuroradiologist detected the lesions on the MRI I had way back in June that we brought with us from Montana. They were hard to see, but knowing what they knew now, they were there. All that time the lesions were growing. Four months cultivating brain lesions. Good work, Neen. I grew ‘em good.

C1

C1 is an acute rehab unit. Acute rehab is for people who need rehab for a short time (not ongoing). Many people in C1 had injuries or surgeries; some had brain tumors or strokes. Rehab is for learning how to take care of yourself when medical problems are inhibiting. In C1, taking care of daily needs was a full time job for most people, including myself. Daily activities take a long time when your body doesn’t work right. In addition to learning to care of yourself the best you can, a patient, depending on need, meets with physical, occupational and speech therapists throughout the day. I met with all three and also a recreational therapist.
When I first arrived in C1, Ryan welcomed me, told me what I was supposed to do and filled out the sign above my hospital bed:
Name: Nina
Caution: Ataxia
FWW (front wheel walker) – this means I can’t walk without falling. I noticed the FALL PRECAUTIONS sticker outside my door.
In rehab, they gave me a wheelchair to use. It was a very maneuverable chair that fit me just right. I loved it. I had freedom from my hospital bed. I was not allowed to transfer from the bed to the wheelchair or from the wheelchair to the toilet without supervision, but once in that chair I could go anywhere in the rehab unit. C1 wasn’t that big, but it was bigger than my hospital bed. Since the strength in my arms was uneven and would cause me to always turn left, I preferred to use my feet to get around in my chair. I could go faster this way. I liked to hang out around the nurse’s station or get stuff out of the storeroom between rehab sessions.
I liked talking to the other patients in C1. It probably wasn’t appropriate, but I asked everyone what was wrong with them and then told them what was wrong with me. We chatted, discussing our illnesses, where we came from, compared notes on medications. Most of them were older and seemed more tired than I was. They moved through C1 slowly creating wheelchair traffic jams in the doorways and hallways. If I couldn’t get around them I put my feet on the back of their chair and pushed them to their room in their chair. I could get a prehistoric person to their room at least three times quicker than they could. My services were appreciated.
Hipless Herb had been in C1 for a month before I got there. He went into the hospital for a hip replacement and they took out the bad hip. When they got in there, they found an infection so they couldn’t put in the new hip. So Herb was getting antibiotics in C1, waiting for the infection to clear so he could get his hip and go home. He had to wear a big brace, his external hip. He was really depressed. Another lady had a brain tumor, and she had been taking steroids for a long time. She had a very round shape to her face. I learned that the “moon face” was characteristic of prolonged steroid treatment. Little did I know, I would have a moon face too.
Mom, Dad and I anxiously awaited the C1 Labor Day Barbecue. What kind of hospital throws a party for the patients? We thought Stanford was a great place. I was very excited about the event. My occupational therapy on that day was to help set up the party. YAY! I taped up some decorations and arranged some cookies from my wheelchair. Here’s what we had: barbecued hamburgers and hot dogs, potato salad, couscous salad, fruit, brownies, cookies, and mini muffins. YUM! We sat outside with Herb and chatted.
Herb asked, “Do you ever find yourself in despair?” Immediately I burst into tears; it had been a rough few days. I’ll tell you why later.
I had more energy in C1 than I had had in months. I had lots of energy and little control of it. I ran all around the unit in my wheelchair crashing into everything and everybody. “WHOOPS!” I said this often. I said this each time I crashed into something, so often that the husband of one of my roommates started impersonating me. “WHOOPS, WHOOPS.” I was a maniac, and I loved it. Being a maniac is really fun. I had lost control of my body, and it made being a maniac even more fun.
Each day, I spent an hour with Ryan, the physical therapist. He was helping me to walk again. I began each day on the stationary recumbent bike. He said this would help keep my legs in line – if I could keep my feet on the pedals, my legs and body would do what they were supposed to. There were straps to hold my feet in place. Next, he had me do stabilization exercises on the mat. On hands and knees, I would lift my legs alternately behind me. Often I fell because I couldn’t balance on three limbs. When my stabilization improved, Ryan tested it by having me kneel and pushing me gently to see how I recovered. I was usually able to compensate and recover to an upright position. Sometimes, I overcompensated and fell in the opposite direction I was pushed.
After warming up, Ryan took me for a walk, or at least what they consider walking in C1. In the beginning, he had to use an ace bandage to tape my left foot at a right angle to my leg so it wouldn’t drag on the floor. The bandage helped. Up until the time I was admitted to the hospital, I hadn’t really noticed that one side was different than the other. Dad and I had been stumbling around in oblivion, but we didn’t know any better. I could put the right foot out to take a step, but the left one needed the bandage in order to get it in front of me so I could put weight on it. As Ryan and I used the walker he supported some of my weight and held me so I wouldn’t fall. We walked short distances together, but they took a long time. I had to think about each step, especially on the left side. Ryan gave me tips: “Heel touches the ground first.” “Slow.” I had to give my body commands to do the things I had previously taken for granted.
When I walked with the walker, Ryan kept telling me to slow down, but I couldn’t. Once I started walking my feet would speed up and once my legs got into a rhythm they couldn’t slow down. They kept getting faster and faster and I would get more out of control. Ryan would tell me to stop and reset. It took a few seconds to get things stopped. I would reset and start again, and the process would start over.
Ryan said that the weakness I was experiencing was coming from my brain, not my muscles. My brain was working overtime to send messages to my body. The tiredness of my brain affected the tiredness of my body. It’s all a part of the same unit. It is hard to understand how weakness comes from the brain, but the brain controls everything including strength.
After about a week in C1 my foot stopped dragging and Ryan didn’t have to tape it up anymore. My balance was slightly better. I was improving. This was due to the IVIg, rehab, my body’s natural healing, or maybe a combination.
Julie was my occupational therapist. The occupational therapist helps with the chores of living your daily life: dressing, going to the bathroom, bathing, grooming, cooking, eating. Since I pretty much took care of myself, we focused on using my arms and standing. We usually started our hour together with ten minutes on the Sarasota Cycle, the arm bike. Sometimes I got to the gym early and did an extra ten minutes for fun. Some days, as part of my occupational therapy, Julie let me take a shower. There was a bench to sit on in there. I transferred from the wheelchair to the bench, then back to the wheelchair. After I had taken a few showers with Julie supervising, she felt confident that it would be okay if Dad was my supervisor. Now I could take a shower more often. Afterwards, I would douse myself with the hospital baby powder. It felt good to clean up, when you are almost helpless, the small things are important.
Julie said that with all demylenating diseases the object is to “rebuild the pathways” between the brain and the body. The brain was talking, but the body wasn’t listening. The pathways get rebuilt by having your brain make your body work. I had to do the hard things in order to recreate those pathways. Maybe Dr. Yesno was right when he said that the brain has an incredible power to heal itself. Julie taped a big piece of paper on the wall and put some crayons on the table behind me. I had to turn around, pick up a crayon and draw on the paper, then turn around and put the crayon back and get another one. The small angular movements required of the feet for turning were difficult, my hands held the wall and table as I turned. If I dropped a crayon I had to pick it up. Sounds easy enough. Not so much.

Remote Control

Sometimes I think about the Mars rovers, Spirit and Opportunity. Are they still going? Before the rovers launched, the scientists predicted that Spirit and Opportunity would only function for several months because dust would build up on the solar panels and halt the production of energy for roving. But dust devils came through periodically and whisked the panels clean. The rovers continued to work long past those months.
I imagine the robot rovers out there moving slowly and analyzing the rocky surface of Mars. What kind of sound do the wheels make on Martian soil and rocks? What are they doing right now?
I thought of myself as a robot rover operating by remote control, only I wasn’t as refined and elegant a machine. I was more like a Viking robot with flashing lights and honking horns. A Viking clown robot rover.
My brain is the remote controller of my rover, but with brain lesions the messages sent to my body weren’t transmitted well. The demylenation removed the insulation on the nerves in my brain so when my brain sent a message to my body, the message wasn’t well received. It was like the message had to travel through a thick asteroid belt between Earth and Mars. My brain grew impatient. The messages were sent over and over. With all of the dead ends in my brain, the messages came through in a choppy manner and with pauses between. When I walked, it was like being on a boat in a storm. It was like being in an avalanche. It was like being in a fast-action car chase. It was like falling out of a raft in the rapids. There was confusion between my body and my brain. My body couldn’t keep up with my brain or my brain couldn’t keep up with my body. The messages didn’t get through fast enough. “GO! GODDAMMIT, GO!
I saw a NASA scientist on TV. He said that if Spirit and Opportunity tilt too far to one side they stop to correct themselves. That’s what I needed to do.

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.

Spinal tap

I think I had five spinal taps, or lumbar punctures as they are officially called through the course of this illness. The first one was in Billings and I thought it was a big deal. They laid me on my stomach and had a gadget that could see through my skin so the doctor could get the needle in the right place. Once the needle was in my spinal column, they tipped me on my side so the juice could drip out. Afterward, they kept me in a recovery area for two hours before Dad could take me home. They were careful to make sure I knew to lay down flat for 24 hours to avoid the spinal headache, and if I did get the headache they told me to go to the emergency room.
“How will I know if it is a regular headache, or a spinal headache?”
“You will know, it will be an experience.”
The next one was less formal. Flobee did it in the clinic (this was the one where the fluid got lost). He had me lay on my side with my legs curled way up, numbed the area, stuck the needle in, drained the fluid and then lost the fluid. I don’t know what he did behind my back, but this was the most painful of all the spinal taps I had. It didn’t really hurt until the next day, but man my back was sore. The bottom part of my spinal cord hurt, bad. He must have really scraped that needle around in there.
The spinal tap procedure in the Mother Ship was similar to that of Flobee – I curled up on my side and the juice dripped out the spigot. Except for one time. They just couldn’t find the right spot. A few doctors tried several different positions. Curled up, curled up tighter, sitting on the bed leaning over a table, curled up on a board to keep my spine straight. “Just jam it in there,” I told them.
They gave up. A couple hours later a new doctor came down. He had me curl up on my side, but he had a secret weapon. “Put your arm over your head.” It worked. We now knew my white count was down. Yay!

Dad was there every day

My Dad was there in the hospital room with me every day. My Mom would have been there too, but she had not yet retired. It was probably better that she wasn’t there anyway because she was having a hard time with the situation. Being at work didn’t take her mind off of what was going on, but at least she was trying. I think the Xanax helped a little bit too, but she was in rough shape. I talked to her on the phone each day. And I talked to my brother, Peter, on the phone every day too.
Each day Dad would take me outside for some sun in my wheelchair. He sat in the shower room with me while I took a shower. We chatted. I was trying to do some knitting in the hospital, and everyday Dad would wind up my tangled balls of yarn because I was making such a mess of them. Each evening I would get to fill out the menu for the next day. You just circled what you wanted. I tried to get as much food as possible by circling one or more things in every possible category. It was quite fun. I could usually get enough food for both of us.

Cognition

On several occasions neurologists seemed surprised to see that I looked “so well.” If they saw my MRI before they saw me, they were astonished to find me not only conscious, but able to think, speak and sort of move around. I was told that I had “extensive” A.D.E.M. The lesions had affected a lot of my brain. One day I asked a doctor, “if my motor skills are so bad, why haven’t my cognitive abilities been affected?” Throughout this illness, I had not lost any ability to think clearly or recognize what was going on around me. The doctor said that people with a lot of education and high levels of mental functioning are better off with these types of diseases.
All those treacherous years of school must have created a lot of connections in my brain. If a lesion blocked a thought, it could take another route around. My mind seemed to stay the same as it ever was during my illness. I guess all those years of dragging my sorry carcass through school paid off in a most unusual way.

The Ambulatory Clinic

I was in C1, the rehab unit, for two weeks. Three days before I was released from the hospital, a second treatment was started, Solumedrol. This was a “mega-dose” of steroids designed to shut down my immune system so it would stop attacking my brain. I hate it when I attack my brain.
I started the Solumedrol on a Wednesday, I was kicked out of C1 on Friday because the insurance company said two weeks was enough, I didn’t need anymore rehab even though I still couldn’t walk. I was scared to leave the Mother Ship. Dad and I stayed at Mimi’s in San Jose, just about a 40 minute drive from Stanford.
I was to receive the last two days of Solumedrol treatment in the walk-in clinic. Dad took me in on Saturday for the treatment. I sat in the chair and knitted while the steroids flowed in through the IV. I noticed that the IV site was sore and getting a little infected. After the treatment, the nurse took my vital signs and Dad and I went back to Mimi’s.
Sunday was not as smooth as Saturday had been. My vital signs were taken before the treatment and my heart rate was slow, around 40 beats per minute. While on F3 and C1, my normal resting heart rate was around 70 to 80. I was given the Solumedrol, and my vitals were taken again. Still, a slow heart, quite slow. The nurse sent me over to the emergency department. As the transporter wheeled me out of the ambulatory clinic, I grabbed a turkey sandwich lunch off of a pile of them to eat on the way over. It was gone by the time we got there. After about an hour, I was given a bed in the E.D. The nurse put in a new IV, took blood, did an EKG, put an oxygen hose in my nose and asked for a clean catch urine sample. I asked the nurse if I was going into a coma. “No,” he laughed, “you would pass out first.” I asked him if I could keep the oxygen hose for my scrapbook. He let me. He also let me keep the stickers he put on my chest that attached to the heart rate monitor and the stickers he put on for the EKG.
Collecting a clean catch urine sample with severe ataxia is quite difficult. The nurse gave me the Kendall Precision Mid-Stream Urine Collector Kit. Dad helped me walk to the bathroom. Although I did manage pee into the container, there was also pee on the toilet seat, the floor and my hands. I was very careful not to spill the container before I got the lid on. I spilled a little, not bad. I cleaned myself up and dried off the specimen container and went back to my bed with Dad’s help.
The neurologists came down. The cardiologist came down. It was decided that I should be admitted again and hooked up to a heart monitor.

B2

They put me on B2, the heart monitoring ward. I was given another EKG and then I tried to sleep while I waited to be taken downstairs for a CAT scan of my chest. My heart rate was staying in the 40’s, although it got as low as 38 beats per minute. I felt weak and tired. The tests showed I was fine, my heart rate was just slow. Dad went back to Mimi’s.
Throughout the night, my roommate kept calling the nurse because she had to go to the bathroom really bad, but she couldn’t walk. The nursing assistant would come and say, “Honey, you are wearing a diaper!” in his Puerto Rican accent. She called him again later and had her diaper changed even though it didn’t need it. This happened over and over: I gotta go, you are wearing a diaper, change my diaper.
While I listened to the diaper drama behind the curtain, I was having a meltdown. I didn’t know it at the time, but steroids can cause fits of depression, and I was already prone to depression. “…it is a damp, drizzly November in my soul,” as Herman Melville says in his introduction to Moby Dick. That night, alone in the hospital, my soul was damp enough to grow mold, drizzly enough to wring out ponds filled with tadpoles and algae. What is the difference between lying in your death bed and thinking that you might be lying in your death bed?
The next morning, I woke up to Mom, Dad, and Jamie reading quietly the number on the heart rate machine. The night before Jamie had driven from Turlock to Auburn (two hours) to get Mom then together they drove to San Jose to Mimi’s (three hours). They arrived at the hospital early that morning. I told them what the doctors had said: possible brain biopsy, maybe stop taking the Lexapro (an antidepressant I had been taking for about two years). Mom thought stopping the Lexapro was a horrible idea, it was probably helping me through this whole experience.
About the brain biopsy, Jamie said they could give me the “old cranial screw-top.” I knew they were thinking of doing the brain biopsy because there was still a possibility that I had a brain tumor. A tumor could affect my heart rate.
This conversation took place about a month later:
Mom: “Well, did you discuss a brain transplant? I could give you mine.”
Me: “But what would you use?”
Mom: “Dead… or I could get a monkey brain, we could do a cranial screw-top.”
Dad: “I think monkey brains are small, maybe you could get two.”
Steve Martin in The Man with Two Brains: “To make brain transplantation possible, I’ve invented the cranial screw-top method of entering into the brain, whereby a large section can be unscrewed without having to shave the head. And I’ve also made it childproof. You push down while turning.”
Overnight, my heart rate came up a little. It was steadily increasing. We showed the cardiologist the Solumedrol info sheet that listed a slow heart rate as a side effect. He didn’t think that Solumedrol would affect heart rate. He said that we could attribute the heart rate to the Solumedrol and he would attribute it to my underlying condition. He sent us home.

Mimi’s

Back at Mimi’s, I was weak and tired. I attempted to walk around the block with the walker and Dad. I made it about half-way before Mom came and got me in the wheelchair. We were all a little nervous that I wasn’t in the hospital because I wasn’t in very good shape. Steven, Mimi’s husband, borrowed a heart rate monitor for sports. We checked my heart rate all the time. “63!” “Back down to 47.” “52.” It went up when I sat up or moved around.
We were confused about why my heart was so slow, but we could see how it was affecting me. I was moving in slow motion. My body felt heavy. I fell off the toilet in the middle of the night in slow motion. I tipped to the side and put my hand down to catch my balance. I sat, pajamas around my ankles, bent to the side with one hand on the floor unable to recover. I stayed this way for a few moments trying to recover, I crumbled to the floor. Dad heard me fall. He came in to get me up. “I’m not looking,” he said. “I DON’T CARE.” He almost had to carry me back to bed.
The next morning, I laid on the couch after struggling out of bed. Mom and Mimi went grocery shopping for dinner. While they were gone, I was falling asleep and waking up, I was very weak. When they got back I told them that I couldn’t tell if I had been falling asleep or passing out. “I think you better take her in,” Mimi said.

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.”