By Tessa Joy McMillan

As an eight year old, I was extremely excited to have a room of my own. But it was not like other rooms. It was an attic: twenty foot vaulted ceilings, exposed wooden beams, spider webs, protruding nails, hard wood floors, and a column of brick created an exciting atmosphere. But to make my room even more amazing, my dad hung an attic swing from one of the large wooden beams. During severe thunderstorms, I would sit on my swing and move to and fro to the pitter-patter of the rain. Life was good on my swing.

***

Mormon DatingIt was my freshman year in high school. I loved every minute of it. I had lots of friends, I was getting good grades in all of my classes, and I was to be in the spring play, Winnie The Pooh. Life couldn’t have been better, except for the fact that because I was a member of the LDS church,  I was impatiently waiting to be the big “one six” to start dating. But, all that mattered at the time was what was happening right then and there. The future seemed too far away to worry about. Besides, I was having too much fun in the present to worry about something so distant.

***

I remember back in junior high I came home after an exhausting day of school activities. I ran up the two flights of stairs to find my swing waiting patiently for me. I slid easily into the wooden seat. It always fit me perfectly. Then, I took off! I blasted off into my imagination pretending I was flying over Germany in a WWII dive-bomber or pretending I was a superhero flying through the air to help rescue those in need. But then I realized I was the one in need of rescue. I had reached the height limits of my swing and by pushing it to its peak one of the ropes had broken. I came crashing down with my hands outstretched to catch my fall. But it was too late. I had fallen at such a great height that my hands could not stop me from slamming with terrifying force onto the hard wooden floors. I lay dazed and shocked for a moment. Then pain came into my hands. I had sprained them both. I screamed and cried not only for the pain I was experiencing but for the betrayal of my precious swing. Why did it happen? Why after years of reliable happiness did it betray me? What did I do to deserve this?

***

Monday, April 13, 1998.  Today, everything was going my way. High school was definitely treating me well. My table during lunch was overflowing with friends who all wanted to sit with me. But with the ring of the bell I had to leave that taste of popularity behind to go to my girls’ gym class. I left for the locker room, changed, and came to join my friends in class to see what physical activities were in store for us. Our teacher arrived and gave us the happy news that we were able to do whatever activity we wanted for class. I had an idea and raised my hand to suggest that we should play games on scooters. Scooters are square boards with wheels on them. You sit on top of them and push yourselves on them with your hands. So, we spent the hour pushing ourselves around and laughing at our enjoyment. Class ended and I felt happy the rest of the day because of the fun I had had in gym class.

Wednesday, April 15, 1998. After a long but good day at school, I crashed on my usual spot on the couch to watch a few meaningless hours of television. Yet something seemed different. My fingers seemed uncomfortable holding the remote control. I tried popping my knuckles and fingers to make the discomfort go away. It seemed to work, and I shrugged off the experience.

A few hours later, it was time to go to Mutual at the church. I had to go since my mother was in charge of the activity for the Young Women. We were to tie quilts that night for poor people in the community. So, we left for the church and set up the quilting racks when we got there. Soon the girls arrived and we began to tie quilts. But as I was enjoying myself tying quilts and chatting with the other young women, the discomfort from hours earlier came back; only the discomfort became an unbearable pain. I dropped my needle, which was in the middle of a knot. It was too painful to even hold the large needle between my fingers. I ran from the room afraid I would scream aloud due to the pain.

The only place I could think of to be alone was my mother’s car. I ran to the car and opened the door. But it caused even more pain to lift the car door handle. I bit my lips and fought the screams that tore at my throat. Yet, as I sat in the car and painfully pulled the door shut, I could not fight the tears from gushing out.

I looked down at my hands. They looked like my own hands. I turned them over examining them to see if I had any bruises or deep cuts that caused this horrific pain. But there was nothing to see. They looked normal but they felt alien to me.  It didn’t make sense. Why was this happening to me?

I had hoped the pain would subside after a few hours. But it never did. The pain wouldn’t go away. Friday, I was sent to a neurologist. He didn’t know why I had pain. Monday, I was sent to a rheumatologist. He didn’t know. Wednesday, I went to a hand surgeon. He didn’t know as well. Days turned into weeks, weeks turned into months with no answers from anyone in the medical profession. Each doctor didn’t know what I had. So, they would send me along to someone else who might know. But the next doctor never did. Most of my teenage years were spent in doctors’ waiting rooms. My parents wanted to find a cure for this pain and so did I. But I hated feeling as though I were a lab rat that was constantly observed, poked, and prodded by the doctors studying it.

Diagnoses were made, but the next doctor would disagree and another name was placed upon my mysterious pain. It was a hideous cycle. Treatments turned into torture. At one time, I was diagnosed with reflex sympathetic dystrophy (RSD). The treatments for this diagnosis were injections into my neck to slow down the nerve messages of pains that my brain was supposedly sending to my hands. Since the pain was bilateral, I had to have two injections done into two nerves in my neck. My mother would get off work and drive me two hours up to KU Medical Center in Kansas City for early morning treatments. I would change into a hospital gown, be laid down onto an examination table and my neck would be wiped thoroughly with iodine. I tried desperately to ignore looking at the thick three-inch needle that was heading to my neck. Faces covered in operating masks would blur my vision as the needle entered my skin. Yes, I was quite conscious and awake during these treatments. I am not sure how I endured the sting each time the needle entered into my neck. But these treatments never helped. I would come home, with my neck bandaged up, and would have such terrible reactions to the treatments I would need to go to the emergency room. I realized that with these “treatments” more problems were created than were fixed.

My pain that had been only located in both of my hands spread to the rest of my body. Not only was I a teenager who could  not dress or feed myself, there were times when I could not even walk because it was too painful to move. I could only feel pain every single day. Not only could I feel the pain from my physical problems, but also pain from losing my teenage independence. I had to depend solely on my parents to help me function at all.

Pills never worked. They also created more problems than they fixed. At one time I was taking pills to stop continuous migraines I had been having. But my pills made my hair fall out. So, I would stop the medication to stop my hair loss, but the migraines would come back again. Nothing seemed to work out right. When doctors would see what medications I was on or had taken, they jokingly nicknamed me the “walking pharmacy.” I didn’t share in their humor and began to wonder if there was any hope for finding a cure.

While in the midst of searching for answers, my lovely social life was gone. My friends who had been around were no longer to be seen nor heard from. I was in too much pain to do anything. School was out of the question. I could barely hold a pencil without tears of pain coming to my eyes. The friends I had would only see me for my disability. I was deformed and changed in their eyes. I was quickly dismissed from interacting with them because I was “different.” Once when I was feeling well enough I came to visit my high school for an hour. I was walking down the hall when one of my former friends saw me. His jaw dropped and his eyes bulged out as I walked up to him.

“Hey Maurice.  How are you doing?” I asked.

He still looked at me with that look of shock and disbelief.

“What’s the matter Maurice? Why are you looking at me like that?” I asked. I started to walk towards him, but he slowly backed away. “Maurice?”

He finally snapped out of it and said, “I thought you were dead.”

“What?” I yelled.

He continued, “There’s a rumor going around school about you. People have been saying you were at home dying.”

I just stared at him for a long time with my mouth gaping open. I finally turned around to leave him standing there. I couldn’t believe people were spreading that kind of rumor about me.

It was awful to think that my former friends who had been so close to me before hadn’t even stopped by to confirm this rumor. It looked as though no one outside of my family even cared about me anymore. I was alone, fighting an unknown enemy within. I kept wondering if there would ever be a time of peace in my life.

One day I couldn’t take it anymore. I had had enough and I broke down. After another useless day of lying in my bed in pain, I found myself sitting on the floor tucked into a corner of my room. My arms were clutching my legs to my chest as tight as I possibly could. I was in a daze as I began rocking back and forth in my corner. All I could think about was how much of a burden I was to my family and what a burden the pain was for me. I wanted to end it all. Death seemed so peaceful and inviting after a year of being in constant pain. I began to sob thinking that my life had to end like this. But my thoughts were interrupted when my parents walked into my room.

“Tessa!” they gasped. “What are you doing? What’s wrong sweety?”  Frantically, they ran to my side but stopped a foot away from my rocking frame. Apparently, I was mumbling the phrase, “I want to die.  I want to die.  I want to die,” over and over again. They watched horrified as I rocked and sobbed on the floor. They tried to calm me down and make me take my mind off of wanting to end it all. They even tried calling more doctors to understand why I was acting this way. Didn’t they realize I didn’t want them to suffer anymore on my account?

Somehow through their coaxing, I finally snapped out of it. My parents got me off of the floor and placed me back onto my bed to rest and relax. I asked them to bring my CD player over so I could listen to some music to calm my nerves. They did and pressed “play” for me. The song Ordinary World by Duran Duran came on. I had listened to that song many times before, but the lyrics of that song awoke a new hope I had thought was gone forever. These were the lyrics I heard:

What is happening to it all?

Crazy some say.

Where is the life that I recognize?

Gone away.

But I won’t cry for yesterday.

There’s an ordinary world somehow I have to find.

And as I try to make my way to the ordinary world,

I will learn to survive…

What is happening to me?

Crazy some say.

Where is my friend when I need you most?

Gone away…

And I don’t cry for yesterday.

There’s an ordinary world somehow I have to find.

And as I try to make my way to the ordinary world,

I will learn to survive.

Any world is my world.

Every world is my world.

There was hope for me. I realized my “ordinary” life was gone. I had lost it. But that didn’t mean I had lost a life worth living. I could never be the person I was ever again, but I had hope. I had hope in a future world I was soon to create for myself.

From that point on, I had a chance to live. Of course I still had pain, but I worked through it. I was able to graduate from high school with several college scholarships. I attended a community college and worked hard to have a 4.0 G.P.A. My efforts paid off when after a year and a half attendance, I applied to Brigham Young University. I was readily accepted and was offered a full tuition scholarship. I later moved to BYU and was able to get back the social life I had once thought was lost to me.

After attending BYU for several years, I was able to find a man who could love me despite my pain. He was the first man who was not scared away by my disability. He stayed by my side to comfort me while my body was crippled with uncontrollable pain. After three months of dating he proposed to me. He also took on my goal to help create our own “ordinary world” together and to give me hope when others doubted my abilities. Four months later, we were married and sealed together for eternity in the Nauvoo temple.

After over nine years of being in pain, no answers were ever found. But I still live my life with hope that someday I will be back in that “ordinary” world again.

Someone once said, “It takes courage to grow up and turn out to be who you really are.” I truly believe that. It took a lot of courage to realize I would never be that young freshman girl ever again. But I accepted it and ended up creating a new future for myself.  I have “learn[ed] to survive.” Because “any world is my world, every world is my world.”

First original copy published in Segullah 2008 Summer edition (segullah.org).

About karenrose
Living out a great season of my life, thanks to Jesus Christ, and two wonderful daughters, a great life's work. Loving this opportunity to share faith online... I'm a single Mom, convert to The Church of Jesus Christ of Latter-day Saints, second-gen Italian, from the East coast originally. Love the fine arts, dance, frozen yogurt, temples, scriptures, writing, jazz, helping others reach their potential, king salmon, ....and not in that order. God is good. I feel it deeply when people have a misconception of Heavenly Father or Jesus Christ, His Son, that lessens or cheapens Them and blinds one's ability to feel His presence or to trust in an ultimately good eternal end to life's circumstances.

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