My life on a stage.

April 19, 2008.

An honors theater class at the University of Utah put on a production about the Celebration of Life-- about Cancer survivors. They had three survivors that they featured and Andrew was one of them. To prepare, they met with Andrew numerous times and spoke with me a few times about certain stories and feelings and aspects of the entire experience.

The night of the performance, the entire family came out to support it.

It was kind of indescribable. I had sent them some bloggings that I had done during the experience and about the experience as my contribution to their stories-- it was easier than trying to relate them all to them orally. At one point, "my character" was shown off to the side, telling a part of a story. It was after Andrew's character "Kyle" was telling the others that his wife slept up at the hospital with him every night. Then, my character was off to the side in a spotlight telling her part of it. As she spoke, it was incredible, painfully familiar. She stood off to the side of the room and recited,

I don't sleep well at the hospital. The nurses are constantly bustling in and out of the room, the IV tower acting as a lifeline is constantly alerting the nurses or this or that, and Andrew would have fits of fevers or chills. I spent the nights staring the ceiling only pretending to sleep as the nurses would enter the room.

By the time light was shining through the hospital room window and I could hear the activities of a shift change outside the room, I would be aching to get up. I would gather my belongings, kiss Andrew's forehead and assure him I would be back later and to call if he needed anything. Usually, he barely stirred.

His face was gray and swollen, his eyes sunken. His hair had long been gone. No more blonde locks, no eyelashes, no eyebrows. He looked emaciated and pained. I'd smile at the nurses as I passed their station. Sometimes one would ask when I'd be back. The answer was usually the same. I would be back after work. To call me if they need me.

I never worried about him while he was up at the hospital. Chances were good that I would pass another willing "babysitter" in the parking lot coming to sit in with him. I stopped in the lobby and bought my coffee. "Right on time," the man would remark. I would force a smile, thank him, and head for my car.

Once my car started, I would stare blankly at the dashboard. Taking a deep breath, I would back out and head down the winding hill towards our house. The traffic was all headed the opposite direction as everyone rushed to start their days. Like clockwork, the tears start. First, one tear sliding out the side of my eye. I brush it away quickly. I lecture myself and try to concentrate on my drive. Silently, the tears fall freely down my face. I rarely remember the drive. Sitting in the driveway, I check my face to make sure it's not too red, gather my belongings, then pull myself from the car.

My neighbor says good morning. I feign the most cheerful voice I can muster and return the greeting. "How's Andrew?" I smile. "He's good..." It's not a lie. For his condition and what they've done to him, he really is good. She doesn't need the details of his emaciated body, his sunken eyes, his graying face, and his comatosed state of being. I let myself inside, strip down and turn on the water to the shower.

The water is refreshing. The heat is comforting and cleansing. It brings more tears. I have to get them out before facing the world again. Before going to work. Before calling and reporting to the family. Before heading back to the hospital. This is my moment.

I take it, turn off the water, and start another day.

***

My mom was nearly sobbing... our entire line of family was crying... I was crying. It was a side of me that remained hidden from most of my friends and family during that time... and suddenly it made sense to the family that had mentioned to Andrew and others that they "never see Krista cry..."

The play was very well-done... I was definitely impressed that it was put together by a bunch of freshman theater students, only one of which was a theater major. My mom staked out the professor after the production and Q&A period and thanked him. She cried as she told him that she always wondered how her daughter could hold up and how she did it. He had showed her. The students' professor promised us a film of the production.

Very very strange to see your life story played out by different characters by different names. Very, very surreal.

God hates me.

I used to have dreams that someone was in my house.

I would creep slowly up to the front hallway where I could hear them coming in just to confirm that suspicion. When I got there, the intruder would jump out at me. I would scream, but nothing would come out. Then, I would turn to run, but my legs wouldn’t work. I’d fall, pull myself up, try again, and fail again. I always woke up right before the intruder jumped at me.

That’s the same feeling I have now. Then, I was only about 6 or 7 years old. Sure, it freaked me out, but I would find sanctuary in my parents’ room for the remainder of the night. Now, I’m not sure when I’ll wake up from the nightmare.

Mostly I remember the dream because of the literal part of it-- my legs not working. The concentration and frustration experienced with each time I go to stand up or to walk is overwhelming. Like it can’t possibly be that difficult to move... but it is.

I already cried. I couldn’t do it at work after the doctor called. I hung up the phone and made myself appear busy shuffling through random papers in my office while I repeatedly swallowed that lump in my throat. After I felt a little stronger, I sent around a text to the family members: "Doc just called. Scans don’t look clear. Indicates MS and not just one time flare up. Diagnosis is difficult and not quick. Don’t call me just yet. At work." I couldn’t have them calling me. Not at work. I knew as soon as someone called, I would break down this barrier I had been trying to build up. I answered a few text questions, gathered my things, and calmly told Brian I was leaving. He gave me almost a pained look, as if he knew it wasn’t good, and said, "I hope you feel better..." I thanked him, turned, walked down the stairs and opened the door and the tears had already started. My sunglasses covered the red watery eyes, but I still hoped no one would be in the parking lot. The further I walked from the door, the harder the tears came. Hard, but silent. I attempted to exchange small-talk conversation with our neighbor through my tears-- it was a weak attempt. In the car, the tears poured faster.

I unlocked the door, opened it, pulled myself inside, and closed it. I slouched back against the door and slid down to the floor sobbing. The house was empty. Quiet. And I didn’t know how I would tell Andrew. I let myself sob loudly to myself for a few minutes, then gathered myself for his phone call. I couldn’t get past "The doctor called," before I was crying. I don’t remember what he said entirely. The only discernible word was, "Fuck," over and over and over. After crying to him for a few minutes, I sat down to try to write and get some emotion out... and a knock came on my door. It was almost expected. I knew my mom would be on her way. Had she called, I would have said no. She knew me. So she just came. I opened the door and she hugged me and we cried some more.

For the next 3 hours, my mom scrubbed my kitchen and started my laundry. I’m not sure what I did. I probably got in her way. I paced. I moved things around. I talked to Andrew again. He moved his plane ticket up to Sunday instead of Tuesday. I just wanted to crawl in bed. I let my mom convince me to go back home with her.

On the drive, she asked, "Why does all this happen to you!?" I answered, "Well, Kara would probably shoot herself. Brea would be too ornery. And Adam... Adam would never leave home. The way I see it, I’m taking one for the team here." She laughed. It was kind of true.

I’m not sure I even believe this is happening yet. I could still wake up. It seems to surreal to think that so much shit can happen to one couple. Shit like that just doesn’t happen...

I like how Andrew put it:

"God fucking hates me."

MRI, take 1.

I left work early and headed to the clinic for my cervical spine MRI. After completing my paperwork, I settled into the waiting room, hoping to get through a few pages of the book I was supposed to have read for school. Unfortunately, I was paired in the waiting room with a couple of very talkative older men. I politely smiled to their comments and responded shortly to their questions. I was not in a talkative mood. The nurse called my name and I anxiously gathered my belongings and limped after her.

The MRI was highly uncomfortable. My claustrophobia caught up with me as I lay in the tight dark tunnel trying to block out the sounds of machinery around me. I closed my eyes and kept them closed through the entire duration. My breathing quickened and it took every bit of concentration I had to keep from hyperventilating. "Krista, you need to hold very still, please," the radiologist's voice came through the intercom system. "Ok," I choked out quickly. Apparently my breathing was altering my image. When the radiologist informed me that I was done, I couldn't get out of that tunnel fast enough.

I pulled in my driveway, she called me back. Apparently the radiologist sees some kind of lesion on my spine or spinal cord (I can’t remember which) and he thinks that’s what’s causing this. She was vague about what it could be, but she knows me well enough to tell me that "it could be nothing" over and over again... yet, she still told me that she had called the neurologist, sent her the results, and the neurologist was going to try to see me tomorrow instead of Monday.

She said that until then, I "grit my teeth and bare it."

So now, I get to sit alone and think of all the horrible things that it could be (and the things that it could be that are not so horrible) and wonder how the hell I’m going to get any of my reading and homework done when my mind is so out of it that I can’t do anything.

I’m tempted to get a bottle and order a pizza and drown my worries.

The ball starts rolling.

It had started in L.A. with my shoulder and neck. It was a strange numbness that just slowly spread down my neck and shoulder into my arm and fingers. My girlfriends were concerned and nearly took me to the Emergency Room to get checked out while we were on our trip. I convinced that that it was nothing and that there was no need to ruin our trip with doctors and hospitals. "I'll go as soon as I get back to Utah," I reassured them.

As soon as I got back from L.A. after Spring Break, I called the doctor to get in. The strange spreading numbness was now accompanied by a very recognizable delirium. On my trip, I had attributed the delirium and exhaustion from late nights and heavy drinking. When the feeling never left me, I was worried. I was anxious to figure out what it was, and more importantly to make it go away.

The doctor got me in that Monday and she put me on some new antibiotics-- Prednisone-- to see if it could cut back on some inflammation if that’s what it was. She assumed it was a strange complications of the shingles I was sure I had before the trip. I had seen her before we left to get antibiotics for it. She scheduled an appointment for me to meet with the neurologist, but was only able to get me in on April 7, 2008. She said it would work for now. The date seemed way too far off to be comforting. It was March 24. April 7 was 2 weeks away! However, she told me that if it didn’t work, I was supposed to call her back on Wednesday.

It didn’t work.

The numbness spread into my leg, causing an uncomfortable limp as I attempted to walk with a leg that was essentially "asleep." It was only on my left side, but it was uncomfortable. I wanted it gone. I called the doctor back.

She went into motion immediately. Suddenly, my appointment with the neurologist was to take place on Monday, rather than the 7th of April. She called me back about 15 minutes later and told me that she wanted me to have an MRI that day. She asked if there was a specific time that worked best for me. I was at work, so either way I would have to leave. I was anxious to figure out why the left side of my body was "dying." She scheduled my MRI for 3:15 p.m that day. I called my parents' house to report what I had found out. My sister volunteered to go with me. Andrew had left that morning for Virginia for his Print Conference for school. I told her there was no need-- I had accompanied Andrew to many such appointments and they were uneventful-- she would have to stay in the waiting room anyway. She told me to call her if I changed my mind. I thanked her and told her I'd be fine.

I would be fine. I was sure it was just some sort of weird chemical imbalance or something nutritional-related, perhaps. It was nothing.

It had to be nothing.

Breathe. Just breathe.

"Krista? This is Dr. Banks. I've got your test results here. Your Brain MRI shows that there are some abnormalities in your brain in an area that is indicative of Multiple Sclerosis. I can see 2-3 lesions similar to the one on your spinal cord. I'd like for you to see me first thing next week. At that time we can talk about treating your symptoms now, as well as talk about some long term treatment options available for M.S. Could you call my office first thing on Monday morning?" I held the phone to my ear and stared blankly out my office window. My eyes watered up, but I fought them back. I wouldn't let myself cry. Not here. Not now.

"That should be fine," I answered. The call ended.

I sat and stared out the window for what felt like several minutes. It's not possible, I thought to myself. This shit doesn't happen. It can't be possible, I tried to comfort myself. Pressure was building behind my eyes and I knew that I couldn't possibly face the world any longer today. I tried to gather myself and force my tears back a little further to give me time for a clean break from work. But first, I knew I needed to spread the word. My mom was probably aching to call and ask if I'd heard anything.

I couldn't talk to anyone at the moment. The tears were too close, and the setting just not right. I decided to send a text message: "Doc called. Scans showed 3 lesions in brain. Looks like MS. Don't call me yet." I sent it to my mom, my dad, Andrew's mom, and my sisters. Then sat, wiping tears that had managed to sneak past my barrier. I had to get out of there. I had to get home. I waited a few minutes, gathered my things, and took a deep breath. I didn't want Brian to see me cry. I walked by his office and said, "I'm leaving for the day, I'll see you on Monday." He looked at me with pained eyes. He knew something wasn't right. I was happy he didn't ask. He just said, "Ok. You take care of yourself and get better. I'll see you on Monday." I nodded and forced a smile and began walking down the stairs to escape. Each step brought the tears closer to the surface. I put my sunglasses on, knowing I couldn't hold back much longer. By the time I reached the last couple stairs, the tears were pouring down my face. I walked down the alley to the parking lot seeking the solace of my car. I hoped no one was in the parking lot. The lady from the café downstairs was unloading things from her car.

"Hi, how are you?" she asked cheerfully.

I once again choked back the tears that had already taken a hold of me. "I'm doing alright, thanks, how are you?" I did a terrible job of hiding the emotion in my voice. I didn't sound convincing.

"I'm doing good," she answered, "Do you work every Saturday?"

Great, I thought, she wants a full conversation. "Pretty much," I responded, "I take Tuesdays and Thursdays off for school, so I work on Saturdays to make up for it."

"Well that explains why I see you around here so much on the weekends!"

I laughed a forced laugh, "Yeah... have a good one!" I answered back, abruptly ending the conversation as I reached my car.

I turned the ignition and the tears returned with force. The drive home was a blur of sobbing and hitting the steering wheel. When I pulled into my driveway, I once again gathered myself and hoped no one would be outside. I hurried to the door of my empty house, opened the door and let myself in. I closed the door, turned and slid down the inside of the door to the floor. There was no need to hide the sobbing now. It came with force. I sat sobbing against the door for a few minutes, completely oblivious to anything and everything around me. This was my moment. My moment to be angry, devastated, and alone. I took it.

This can't be happening to me.
This shit doesn't happen.

It was surreal.

I had spent so much time convincing myself that I could not have Multiple Sclerosis. I was certain.

And now... I was wrong.

Not it.

"You know who else has M.S?" My mother intended to continue on with a string of people in the neighborhood that I knew who were living with the disease. I almost laughed.

"I don't have M.S., Mom."

"Yeah, I know... but still." She sounded unsure, like she was still trying to convince herself. We continued the drive toward my house in near silence. I stared out the window or rested my eyes. My body ached and my mind was reeling with all I had to do. Spring break had passed and school was charging forward, with or without me.

It was Saturday and I was supposed to be at work. I had called my boss, Brian, to let him know that I was having more tests run that morning and would be in when I was finished. Now I was wishing I had told him I wasn't coming in at all.

I got home and emptied my belongings from my mother's car. She had insisted I bring my laundry to do at her house over the weekend... I never did get to it. After she left, I took a few moments to myself to relax and be alone. With the past week's events, it was much needed. I pulled myself from my daze and headed to work.

The work day was long. The doctor was on-call at the hospital and had promised to call me as soon as she reviewed my MRI from that morning. The order even said, "Page Dr. Banks STAT with results." I sat working quietly in my office with my phone nearby in case she called. I tried not to think about it. I tried to convince myself that it was some kind of fluke-- maybe dietary-- maybe it could be something stupid like my potassium level or B12 level. It had to be something embarrassingly stupid.

At about 2:30, the phone rang. My heart skipped a beat. The number was unfamiliar.

It had to be the doctor.