Every day more and more individuals are writing their stories about illness. It is a fact: millions of us will live for several years with a condition that ultimately kills us; increasing numbers will experience the gradual loss of memory from dementia or stroke. So we scribble daily in our journals and write our blogs as a way to protect our dignity and independence.
As I have shared with you in my previous posts, this past semester, I taught an online course in Literature & Medicine at Coastal Carolina University. My students were encouraged as part of their first writing assignment to write a reflective essay on how illness has impacted on their lives.
Their essays were honest and poignant. This writing assignment along with others during the semester, challenged these students to learn about their capacity for empathy, moral growth and restoration of the patient’s humanity. I read recently in James Kelly’s beautifully crafted book, Where Night Is Day, that quietly reveals, that “ one way to discover the meaning of illness is to make a story of it, to make your experience a narrative.” Kelly works in critical care as an RN in the ICU at Lovelace Women’s Hospital in Albuquerque.
Most of my undergraduate students successfully understood Kelly’s sensitive narrative about how increasing numbers of people display courage and grace in the face of illness. I am sharing this story written by one of my students, Nakeava. It is entitled, “The Yellow Envelope.”
The Yellow Envelope
I can remember the day my mother walked into the house with a yellow envelope after coming back from the hospital. Before she left the pain that I could hear in her voice was so powerful that I could feel it as well. She’s been moaning and groaning for as long as I could remember so I pushed her to go to the hospital. “Mommy what did they say?” I asked. She responded “Well baby they diagnosed me with this disease called Lupus, and that’s what has been causing my excruciating pain lately.” My mother always sat in bed and cried about her joints and how much her body was aching. “Come put a pillow up under my leg”, she would say or “please come rub my back” she would cry. Little orange pill bottles took over her top dresser drawer. If you didn’t know any better you would swear she was some kind of addict. She would take some in the morning, some before bed, and some just while she was experiencing pain. As she continued to read her results to me, they also said she had fibromyalgia. All of this is what has been causing her joint pain/ stiffness and the fluctuation of her weight. I was somewhat happy that it wasn’t her being stressed from my siblings and I that caused all of this pain and weight gain.
At the age of ten I wasn’t sure what any of this meant. “Mommy is you going to die?” I would constantly ask. She would often cut me off in mid sentence and explain that with God on her side she could defeat any disease. That following month my grandmother and I had to rush my mother to the hospital because she was experiencing the same pain as the time before. After sitting in the cold room filled with silence the doctor came in and poked her with all sorts of needles and gave her pain medicine. Eventually, we found out that she was not taking her medicine as she was ordered to. She would constantly cry out “My weight just keeps going up and down that is not attractive.” The doctor explained to her that no matter how healthy she felt at the time, until she has totally survived lupus she should do as she was told. After that visit we no longer had problems with my mother making excuses on why she couldn’t take her medicine.
Lupus is a chronic inflammatory disease that can affect various parts of the body such as skin, joints, kidneys and blood. My mother’s lupus affected her joints. This disease is considered chronic because the symptoms last longer than the other symptoms. Lupus is considered and autoimmune disease as well because the immune system cannot tell the difference between bacteria, germs, viruses and healthy bodily tissue. Therefore the autoimmune system creates autoantibodies that attack and destroy the healthy tissue. This is where the inflammation of the joints comes in. The pain is random and can happen at any time and when it does, it’s hard to do certain things such as standing too long or the movement of phalanges. Fibromyalgia is also a chronic disease. It’s related to arthritis. At any age you can get lupus but, it is more common in older woman at the ages 40 through 50. After researching lupus, I knew that it was way more serious than what people explained to me prior.
I was never good with dealing with the pain and suffering of others. It hurt me more seeing my mother in pain than myself sick or in pain. To me she was too young to be going through all of this. Only forty years old. She was my Queen how could this happen? There was no one else I could depend on she couldn’t die. I often wondered was she reaping what she sewed. A thousand thoughts ran through my head at the time. She was too good of a person (I believed). Every day she constantly reminded me that everything happens for a reason. Of course I had to look at everything with a positive perspective because I had to be strong for not only her but for my brothers as well. Maybe she was blessed with the disease so that she could talk and educate others on lupus and the symptoms. She always said she wanted to make a difference in someone’s life. Maybe this was her opportunity. After surviving Lupus she went to multiple charity events and support groups to preach to everyone about having hope. Her speaking out to people encouraged me to view every situation as a blessing. Unfortunately there are many people that has lost a life or a loved one from lupus, not my mother. She survived and is currently stronger and healthier than ever before. I must say we are extremely blessed. I guess that yellow envelope wasn’t as bad as I thought it was after all.
Send me your stories.
James Borton mail to firstname.lastname@example.org