As people, you may have to “play the hand you are dealt”, but how you play it is up to you. This positive outlook is my philosophy, and I choose to let it guide my way in life.
After landing a fantastic job at Fort Detrick, home to the U.S. Army’s Medical Research Institute, I hoped to bring financial security to my family. Three months into my endeavor and just before I turned forty years old, my hopes and dreams came crashing down with the sudden onset of illness. Ironically, I developed a debilitating disease while I was part of a team who were striving to find cures for chronic and deadly diseases. I was quickly diagnosed with Lupus, an autoimmune disease attacking my organs and joints, thus having a profound negative impact on my quality of life.
First, I started to experience reoccurring fevers and was overcome with extreme fatigue. The fatigue was so intense that I could barely carry my own body from place to place. Then, I began to notice swelling and painful lumps forming around most of my joints. With every step I took it felt as if I was walking on a bed of rocks. The simple act of repositioning in bed was excruciatingly painful for me, from head to toe. My mouth was riddled with ulcers, making even a slight sip of water burn like acid. Pleurisy, an accompanying lung condition, made every life-giving breath I took feel as if a butcher knife were being thrust into my back.
Through imaging tests the doctors found growths appearing on my liver and left lung; there are patches on my kidneys, an indicator of early renal impairment. Autoimmune disease is defined as when the immune system attacks one’s own body; I had definitely become my own worst enemy.
In an effort to help me, the doctors prescribed harsh treatments such as steroidal and chemotherapy drugs. It seemed that with each passing doctor appointment I was advised to start another medication, all of which came with unpleasant side effects that led to new ailments and diagnoses. I felt like a walking medicine cabinet. I was becoming even sicklier.
Now disabled, I lost my ability to work, drive a vehicle, and perform normal tasks of daily living and, above all, was unable to parent at the standard I once held. Having experienced numerous ups and downs in life, this was the most challenging for me.
It was then that I realized what defined me and gave me value as a person. How I excelled as a mother, an employee, a “bread winner” for my family, all things of importance, were lost. Simple pleasures had become burdensome. For example, a once cherished hug from my daughter was now too painful to endure. Family meals are supposed to be a time for fellowship, and yet I dreaded the simple request, “please pass the rice,” because lifting the bowl caused excruciating pain in the joints of my fingers and hand. I found myself sleeping in my street clothes in a recliner because I couldn’t climb the staircase to properly wash and prepare for bed. Who had I become?
Feeling worthless, grieving the loss of self as I knew it, with every fiber of my being I tried to shut my eyes, lie down, and die. Guess what? It wasn’t my time.
Realizing I wasn’t going to “croak” on demand, I decided it was time to “pull myself up by the boot straps” and use my brain for good as opposed to self-destructive thoughts. Despite my physical limitations, I did still have my faculties, so I read. I read and read every uplifting self-help book I could possibly find. With an open mind I delved deep into a variety of natural approaches to health and well-being.
Gradually, accepting the “hand that I was dealt”, I realized that this disease would never go away and that having a good attitude and a strong mind would be my key to survival. Desperate to feel better, I explored an array of gentle techniques ranging from dietary changes to alternative medicine such as traditional Chinese medicine. I was even able to implement an exercise regimen of gentle stretches and yoga to assist me in regaining strength. Discovering various coping mechanisms like meditation and deep breathing exercises helped with pain management. Then, by partnering with an herbalist who prescribed specialized formulas and performed acupuncture on me, I became intrigued by many of these alternative approaches to well-being and eager to share with others all of the knowledge I had obtained.
Over time, I was able to determine which methods worked well for me, and getting a grasp on how to function at an optimum level in my day to day life, regardless of limitations, would prove to be a life changing experience. This exciting new journey of learning, growing, healing, gaining strength and rediscovering myself on a whole new level was transformative.
Over a two-year period, my Lupus was finally in remission. Oddly, the disease was proving to be a blessing in disguise.
As I started to feel better, I could do more and even reenter the work force on a part-time basis. It was through physical limitations that I unveiled new talents such as voluntarily writing grants for a local nonprofit animal shelter. It was through the grant awards that I could feel a sense of value in knowing that I still had the ability to make a difference. It took getting sick for me to possess the courage to step outside my comfort zone and try new things, like going to college.
I have a new dream, a dream to earn a degree as an Occupational Therapy Assistant. Having walked in those shoes, I know what it is like to have to reinvent yourself on a different level. In occupational therapy I will have the opportunity to guide others in their journeys of understanding how to live a meaningful life with a chronic illness.
I may have to play, “the hand I was dealt,” but how I play it is my choice. Lupus didn’t take my life away. It provided me with a new life, perhaps one that will prove to be even better.