Listening To MS

Chapter 1: Listening to MS: What are Our Bodies Telling Us?

It has been three years since I was diagnosed with multiple sclerosis. Three years since I felt happiness would never again be possible. I remember that day very well. I was in the den, when my husband Dennis came home from medical school. He began asking me about my day.

"How did it go? How was your appointment with the doctor?" he asked.

"I was at the doctor's for 45 minutes. She asked me a lot of questions. 'When did the numbness start? Is it just on your left leg? Is there any weakness? Any headaches?' She also seemed to be very interested that I had purpura and optic neuritis in the past." I responded.

As I explained my office visit Dennis began taking his hospital smock off, placed his books on the table and walked over to the couch and sat down while looking through the mail--the daily routine.

I continued describing my visit while Dennis listened half-heartedly.

"So what did she say it is?" he asked with a passing interest.

I paused and lowered my voice. Calmly I said, "The doctor thinks there is a good possibility it could be multiple sclerosis."

The words came out softly without conviction. I knew this statement would stun Dennis. Being in medical school he knew exactly what MS was and what a debilitating nerve disease this could be. "Common things are common." he would always say. But at that moment it hit him that when things happen to you, they don't feel so uncommon anymore.

Dennis dropped the mail on the table and quickly looked at me with a nervous smile on his face. He was stunned, and amazed at the same time. It was almost as if the medical student was intrigued with the diagnosis, while the man who loved me, the husband, was shocked.

"MS. Just like that? No test, no nothing, she really thinks it's MS?" He asked in disbelief.

His question hung in mid air. My mouth was dry. I was silent. At the same time I was looking through Dennis's medical references, trying to find some information on MS, hoping to find something that would contradict her diagnosis. After all, they were wrong five years before when they diagnosed me with leukemia and it turned out to be a severe case of mononucleosis. They had made a mistake before, I thought.

At that time I was very ill. I had lost the ability to coagulate blood and began bleeding into my tissues. My platelet count had fallen to 6,000. I was covered with bruises and small dots of blood called petecheai. I had them everywhere -- even on my tongue. My options at the time were a splenectomy and high doses of intravenous steroids. I was hospitalized for fear that I would bleed into my brain. Despite the obvious predicament, I felt a sense of peace spreading throughout my body. I felt light and expansive and was aware of tranquil smile on my face. There was no trepidation, no concern. I felt perfect and whole in that moment, as if protected or bathed in love ­ a radiance exuded from within me.

The next morning the doctors awoke me and proceeded to tell me that I was getting better. A surprise to the doctors, my platelet count had gone from 6,000 to 75,000 overnight without any treatment. By their faces I could tell they were expecting an overtly elated reaction, but intuitively I must have known. My only reaction was a smile as I drifted back to sleep. Thankfully there was no need for any treatment. This experience was profound and continues to stay with me always. Angels were amongst me that day and I will always remember the feeling. Within a month's time I had recovered completely.

Life is a God given privilege. I had thought that experience had been my wake up call. I felt that this had been my lesson on how not to take life for granted. But here I was again five years later behind a desk looking for information on multiple sclerosis. What could the lesson be this time? What am I to learn from this experience? Why me? Why now? As these thoughts raced through my mind, I turned my somber face toward Dennis and said softly, "She scheduled me for an MRI, but she is pretty sure that it is MS."

As days passed the anxiety began to build. I had no appetite, no energy. I was obsessing over the diagnosis. There were times that I thought I would never be able to stop crying. "Why did this happen to me?" My voice trembled, as I gasped for air. It seemed the tears would never stop, as I felt them cascading down my face. "What have I done to deserve this?" I asked God. Maybe I needed to be a better wife, more dedicated to my husband. I thought. "I'll be a good wife and support my husband, without hesitation, even if he wants to be a surgeon. I don't care. If he wants to move away I'll do that too. I promise, I promise, I promise..........." The words seemed to linger in mid air. I repeated these words over and over until I collapsed on the bed in a fetal position, sobbing. "I'm so tired, so tired." I cried. I cried myself to sleep, from shear emotional exhaustion, asking God for forgiveness.

I awoke from a peaceful sleep and from a dream world where MS didn't exist. As I became aware that the disease may very well be a part of my reality, I pleaded with God again. "Please God, I promise if these test results come back negative, I'll sacrifice my life for my husband. I'll support him in anything he wants to do." I felt this must be it. This must be the lesson this time.

The pact was made; I hoped the MRI would not confirm MS. It was all a big mistake. After all it was just a little numbness. The same kind you feel when the dentist administers anesthesia. It's not a big deal. It was just another wake-up call, a warning to be more supportive to my husband.

It was Tuesday morning, the day of the exam. The MRI was scheduled for noon. I had become more and more anxious: my teeth were clenched, my belly tight, and I made countless trips to the bathroom that morning. There was nothing left to get rid of. I thought as I sat on the toilet with my arms crossed over my abdomen.

I felt comfortable in that small bathroom. It was only four by five, the size of a small closet with a shower, a few mirrors, and a sink. It was carpeted and had a small window above the toilet. There was a heat lamp above which turned the entire room red and warm. I found this warmth comforting, like the warm glow of a fire on a cold winter day. It reminded me of the walks I took by the river, as a child, and the orange and red hues of the sunsets reflecting off the water. It made me think of simpler innocent times. My tense body soon began to soften. I did not want to leave this safe haven. I wanted to hold onto this peaceful feeling. It was as if this room separated me from the real world. I felt as if the disease didn't exist in this room. I envisioned myself curling up on the bathroom rug, under the red light and sleeping for days, waking up to find that this was all a nightmare.

The time came, I went to my appointment, it seemed as if my body was on autopilot. My mind was somewhere else. I was aware, yet my body felt numb, silent, almost unresponsive. As if I was separate from myself, watching myself exist. Maybe this is what people mean, when they say they are experiencing an out of body experience. By dissociating this way I was able to maintain some control. I feared feeling even the slightest bit of anxiety, afraid it would snowball into an anxiety that would never leave. I reasoned that anxiety would only drain me of much needed energy, energy I needed for minimal functioning -- walking, talking, and taking care of my baby. So I laid there for 45 minutes in that coffin like machine, numb to the moment. I noticed with a sense of detachment as they injected me with dye, but it didn't faze me. And then it was over, just like that. My future was now in there hands and I wanted to be home and safe.

The day of the results came. I began trembling. Tears began to form in my eyes, but I managed to swallow them. As the time drew near I felt as if I could lose control, a feeling of quickly falling off a large cliff, while trying to grab anything in sight to stop from falling.

I called Dennis immediately. "Please come home, I need you to be here when I get the call. I'm so scared, I can't stop from shaking. Please come home, please... I need you to hold me, stop me from shaking." I pleaded.

"I can't go home now. I need to finish writing up my patients. Besides I'll be home soon enough and we'll talk then. Be strong and remember if you have MS, you've had it for many years and labeling it isn't going to change or worsen your condition. The only difference is, you now know you have it." He said with confidence.

His steadfast demeanor in stressful situations always calmed me. While these words were comforting, I longed to be held. I longed to feel his arms around me, reassuring me everything would be fine.

I thought of calling my mom, but didn't want to worry her. I didn't have the energy to bury my own fear and insecurities in order to reassure my parents. I didn't have the energy to be stoic. No this was definitely not what I needed. I decided to call a friend. I hesitantly picked up the phone. As soon as I heard her voice I began to cry. I felt like a jigsaw puzzle whose pieces had scattered to the floor. I explained what had happened and that I needed someone to be there with me when the call came. She assured me she would be there as soon as possible.

An hour went by and I just sat on the living room couch, my legs tucked under my while both my arms were hugging a pillow close to my chest, as if by pressing hard enough, I would make the pain I felt in my heart go away or at least lessen it. I began rocking back and forth, back and forth, almost obsessively. By making my mind concentrate on this repetitive motion, I hoped to block out thoughts of the impending phone call. It was also an outlet for all the nervous energy I was holding on to. Suddenly, the doorbell rang loudly. It was an old doorbell and under normal circumstances would make a person jump, but under these circumstances I practically shook out of my skin. Startled, I jumped up and was relieved that my friend had arrived before the call. We embraced at the door. I held her tightly. I was so thankful to have my friend by my side. The trembling began to subside little by little. The tears would come and go, but she was there to comfort me; to reassure me that things would be okay. For that moment it was enough to know that I could lean on her.

The phone rang, my heart sank and I began feeling flushed. My entire body became warm down to my fingertips; it was a warmth of apprehension, not tranquility.

I picked up the receiver, "Hello Cris, its Dr. Anderson with your MRI results. I'm sorry to have to tell you this, but the results are conclusive for MS. The MRI shows that plaques have formed in your brain. These plaques are scars left over by inflammation caused by the disease process."

I was silent; just listening word for word. Everything seemed to be happening in slow motion.

"The next step is to refer you to a neurologist. Again I'm sorry and I wish you all the best." She said quietly.

I remained silent. I was so still, as if I were trying to figure out what was happening, hoping that this was just a misunderstanding. I tried to integrate all I heard. It soon became clear to me, there was no mistake. This was real. It was official. There was no more turning back. No more hoping or wishing for a mistake. It was conclusive. This time I had a disease!

When Dennis came home I was a mess, asking why repeatedly over and over. I was grasping at straws. I asked him if it were better to have cancer than MS. I asked him what I could expect. He was unsure of the prognosis and began searching through his medical books for answers.

"What does this mean? How will I be a year from now? Will I be able to function? I want more children, more babies. I want to be able to enjoy pregnancy again." Questions began flooding my mind. I didn't know much about MS. All I knew was that it could cause paralysis. I began seeing images in my mind of wheelchairs and of being bedridden. Then I remembered what Dennis had said. "Just because you are officially diagnosed or labeled with a disease, doesn't make you more ill than you were to begin with." That's true. I thought to myself. I've been living with this for a long time. But quickly my fears of the future returned. "There is something inside of my body that I can't control, an autoimmune disease, eating away at my nervous system, sabotaging health and happiness. I felt I was losing control over myself, my well being. The months ahead were filled with agonizing pain and feelings of isolation. Fears of uncertainty about my future would seep into what should have been pleasant memories--my son's first birthday and my husband's graduation.

There were moments of acceptance and those filled with anger and despair. But as you will see, once I broke through the veil of depression, I realized that MS was responsible for turning my world upside down, eliminated the safe, stable life I once knew, and replaced it with endless possibilities. My intention now was to listen to its message. What could I learn on this new journey?