This is a story of a very special patient. A story that may change your outlook on life.
When I first met her, there was an interesting aura that surrounded her. An aura of positivity and contentment. She was listening to her favorite band on her iPhone and humming along. Her carefree countenance was perfectly paired with the jovial tunes.
I had admitted her to the hospital for an infected bedsore. She was started on all appropriate treatment modalities and fully understood her plan of care. She was debilitated but displayed an enlivening attitude towards her disease and prognosis.
I was really intrigued by her perspective towards life and asked her to share her story with me. She graciously obliged.
I remember asking her if she had a bucket list and her eyes lit up. A sense of hope and excitement invaded her casual demeanor. She reached for my hand and with a radiant smile, she said, “I want to meet Ellen Degeneres in person and see a Broadway show in New York.”
Seconds later, a despondent look entrenched her excitement, and she added, “I don’t think it will be possible in this lifetime, though. Multiple sclerosis does not allow me to travel far anymore.”
At just forty years of age, she was bedridden and dependent on a caregiver due to multiple sclerosis. She was unable to perform routine activities of daily living.
Back in 2002, she was a mother of two and expecting her third child. She lived in Arizona with her husband who was in the military and worked as a photographer at Sears Portrait Studio.
One morning while she was swimming, she felt numbness to her left side. Since she was young and healthy, she chose to ignore it. Her family was in the process of moving to another military base, so her mind was preoccupied with the big move.
A few weeks later, she was visiting her mother in El Paso, Texas. Her numbness spread to the other side and her mother convinced her to seek medical attention. She went to William Beaumont Army Medical Center, and after multiple tests, she was diagnosed with multiple sclerosis. She was only 26 years old at that time.
Her initial reaction to the diagnosis was denial. Her feelings ultimately evolved into acceptance. She moved to California and tried to live life to the fullest. One of her favorite memories is being an audience member at The Ellen Degeneres Show. She fondly recalled that day. “Ellen made me forget about multiple sclerosis. Her happiness was so contagious,” she exclaimed.
In 2008, she underwent a hip operation, and her condition started to deteriorate thereafter. She became wheelchair bound and started to lose her independence.
Her husband ultimately left her because “he could not take the disease anymore.” She felt abandoned and alone, so she finally moved to El Paso to be with her mother.
A few years later, her mother was diagnosed with end-stage pancreatic cancer. She confessed that one of her biggest regrets is that “multiple sclerosis did not let me take care of my mother when she was dying. In fact, my mother took care of me as long as she could.”
Despite going through difficult times, she displayed extreme positivity. She gave credit to her son and caregiver. She added, “It is what it is. I cannot stop living. Now I enjoy the little things in life. Whether it is enjoying a simple meal at a restaurant, wearing a new dress, or listening to my favorite tunes. I will savor life as long as I can.” She also firmly believes that one day, there will be a cure for her disease.
I thanked her for sharing her story with me, and she said, “I hope that after reading this, someone with MS would pick up a book and learn about the disease. I hope that someone with early signs would seek attention promptly and not ignore their symptoms like I did. I also hope that someone who is having a bad day would appreciate the little things in life. ”
As I walked out of her room, she asked, “Do you think Ellen will read your article?” I smiled and responded, “I sure hope she does.”
Neha Sharma is a hospitalist. This article originally appeared in the El Paso Times.
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