Most of us have heard the credit card commercials that give the dollar value of certain items and then end with "priceless." Through my experiences, I have come up with my own little commercial that goes something like this:
Gas to get to the doctor ... $5; Insurance Co-pay ... $35; Prescriptions ... $50; Helping someone else who has just been diagnosed with MS ... Priceless.
Fifteen years ago when I was diagnosed with Multiple Sclerosis, I never would have dreamed that anything good could ever come from this disease. In a prison of my own denial and depression, I fumbled through years of ignoring what was happening to my body until the pain became so great that I could not pretend 'I was okay.' Accepting my illness led me on a journey of understanding that all things happen for a reason, and today as an Injection Training Nurse who teaches patients how to administer their own medicine, I realize that I was wrong about nothing good coming from this disease. Truly what I have experienced has been nothing short of phenomenal.
For those who have ever cared for a chronically ill person, or been chronically ill themselves, it is easy to see the intrinsic value of a good nurse. The impact of several nurses throughout my life has made me the person I am today, and gave me a career path that continues to reward and fulfill me. As a child, I suffered from severe allergies and asthma and spent most of my first years in grade school in and out of the hospital. Due to a limited income and no health insurance, I wasn't able to receive allergy injections as recommended, but God had put an angel in my path to see to it that I had the treatment I needed. The angel, or "Miss Bea" as she was affectionately called, was a nurse. "Miss Bea" worked in the doctor's office where I went when I was sick. When she learned that I wouldn't be able to come back for weekly injections, she took it upon herself to come to my home, every single week, until I was in high school. A warm smile and a thank you were her only pay, and she never asked for more than that.
As a sickly child, I missed a lot of school and, it seemed, a lot of other opportunities. Now, at 39, as I look back on my life, God has given me the ability to realize that many of those opportunities weren't really missed, but instead they were traded for other opportunities that the average person didn't have. My friends were taught to read by a teacher; I was taught to read by a nurse. I will never forget the book, The Little Engine That Could. I can't remember the nurse's name, but I still remember how her face lit up the first time I read the words, "I think I can, I think I can."
Multiple Sclerosis made its debut in my life when I was only 18. Barely high school graduates, my best friend and cousin, Melissa, and I were having the time of our lives. We had just returned from a summer trip from California when Melissa became ill. As her symptoms worsened and the doctors couldn't explain why, she was admitted into the hospital. A little over a week later, she passed away and we didn't know why. She was only 19 and I didn't understand how she could be gone in the blink of an eye. The thought plagued me until, four months later, the autopsy revealed that "Fulminating Multiple Sclerosis" caused her death. Then it plagued me even more. The doctors said they really didn't know what to call it, and Melissa's case was very rare. Neither I nor my family knew anything about Multiple Sclerosis (what we now commonly refer to as "MS") at the time. To us, it was the proverbial "elephant in the room." We never discussed it. Later, as my own journey unfolded, acknowledgment came, but it took me a very long time to come to terms with my deepest fear ... wondering if I would share Melissa's fate.
It was about three years after Melissa had passed away that my symptoms began to emerge. I was running into walls and tripping frequently, much more so than what could be attributed to being 'accidental.' Still, despite the onset of additional symptoms including blurred vision, fatigue, and strange sensations, I did not want to believe that there was something wrong with me. In a relationship I thought would last forever and attending college, I was very excited about the future. My own will power wouldn't allow anything to get in the way of my dreams. Over the next couple of years, as I was finishing nursing school, I attributed my increasing fatigue and dizziness to stress. As the symptoms progressed, I saw a doctor who told me I was hypoglycemic. I never mentioned Melissa.
I followed the doctor's orders and changed my diet. But instead of getting better, I seemed to be getting worse. My relationship that had been so promising was falling apart and, as a result, my health problems were attributed to depression. The recommended course of action was to end this relationship, reduce my stress, and take anti-depressants. Again, determined to be a "good patient," I did what I was told. Later, as I began losing sight in my right eye accompanied by severe pain, I saw an ophthalmologist who gave me a diagnosis of Optic Neuritis. He also recommended that I confirm his suspicions with an MRI.
I was not prepared to hear what came next. As the doctor read the report, I remembered Melissa. "Probable Multiple Sclerosis," he said. "Probable," I thought. "Probable is just probable. It doesn't mean I have it."
For some time I had been getting acquainted with 'denial' and in that moment it became my new best friend. Doctors seemed to want to confirm my diagnosis while I did everything I could to ignore it. I tried to hold onto the notion that it just couldn't be happening to me. After the ophthalmologist told me MS was likely, I sought another opinion from a neurologist. This doctor ordered a lumbar puncture to confirm what the MRI had shown.
Even though I couldn't accept that I might have MS, I couldn't deny the emotions welling up inside of me during this time. I felt like an outcast. I was scared and confused. One of my most vivid memories were the moments leading up to the lumbar puncture as I stood in a gown with my face against the wall, waiting for the procedure to be performed. The whispers of a medical student and my neurologist rang out in my head as if they were being announced across a loudspeaker.
"What does she have?" the student asked as if I wasn't in the room. "I think this is MS," the neurologist replied. To me it was like being in the grocery store and hearing, "Clean-up on Aisle Nine!" or "MS in Room Five!"
The results of the lumbar puncture came back negative, further reinforcing my denial. What isn't confirmed isn't absolute. My internal chant, "Probable is just probable," resurfaced even though this was the second doctor who was telling me it was likely. This was the early 1990's and I was told there were no available treatments. I denied this too and began my own search for treatment, ultimately finding only some experimental trials that I didn't qualify for.
After hitting this dead end, I gave up hope that I would ever find the answers I needed, but the symptoms did not go away. For the next several years, I not only dealt with the discomforts of progressing MS, I also suffered from severe depression. MS isn't just a disease that affects its victims physically. There is also a social component and a spiritual component to living with MS, besides being too tired to complete a full day of work. Who wouldn't ask themselves whether or not they could find a partner for a long-lasting relationship when faced with a lifetime of illness, and likewise, it is human nature to wonder why God would pick me for such a fate.
So I took my pills for depression and went on with my life. I worked as a nurse, married a wonderful man, and we started a family together. I had a wonderful pregnancy and nine months later, I held my first child, Miranda, in my arms. Life was good and for the first time in a long time, MS took a backseat in my consciousness ... but only for a little while.
Patients with MS tend to do well during pregnancy. The changes in a woman's body while another life grows and flourishes inside tends to create a feeling of well-being, masking the symptoms of MS, and creating a mental diversion. After delivery, however, is a different story. Often there is a crash that occurs and with a newborn child to care for, the physical and emotional impact can be devastating.
Not long after Miranda was born, I had a spell so severe that I couldn't get out of bed. As I lay there, having to accept help to take care of her, I made a decision that I wasn't going to be a victim any longer. I had to accept that I had MS and had to learn how to deal with it. My frequent trips to the Emergency Room had afforded me the label of a "drug seeker," and it was on one of those trips that I admitted for the first time that my symptoms might be caused by MS. The doctor, who had been cold and harsh previously, looked at me with compassion after the words, "Do you think this could be caused by MS?" sheepishly came from my lips. He urged me to seek help. Somehow this caused a turning point in my attitude, which then led to a new journey, learning how to deal with MS in my life. I traded in my old friend "Denial" for a new best friend, "Hope."
While I still have occasional flare ups and deal with depression some of the time, I am able to live a fairly normal life as a working wife and mother. Best of all, the culmination of my experiences sparked a desire to use my nursing skills and my experience of living with MS to help others who share this disease. Through working with support groups, I am able to share my story and encourage others. As an injection training nurse, I travel to the offices of many different doctors to meet and teach newly diagnosed patients to teach them how to administer the injections. These sessions also give people who have been recently diagnosed with MS an opportunity to talk one on one with someone who has lived with the disease for many years and find out what it is like on a daily basis. What I teach them clinically is important, but what I am able to share emotionally and spiritually is as much therapy for me as it is for them.
Although I was told I shouldn't have any more children, I did. Emma is now four years old. Having found a good doctor who could answer all my questions and reassure me that I was choosing the right treatment to manage my disease made all the difference in the world and in my life. Not surprisingly, it was a nurse who suffered from MS herself that finally opened my eyes to realize that I had this disease, but it didn't have me.
I haven't had a relapse in six years. I am involved in an MS advocacy group where I share my story with other patients around the country and constantly look for other opportunities where I can use my experience to help others. Today, I am the nurse who reads The Little Engine That Could to my own children, and as I say the words, "I think I can, I think I can," I am reminded of the moral of the story...that sheer will power, faith and positive thought can change lives. I am that little engine that could.