Note: On December 8th, I was honored to be invited to speak and mark a moment of silence in honor of all those coping with chronic illness as part of the U.S. Department of Defense Peer Reviewed Medical Research Program meeting in Washington, DC. Below is the speech I delivered.
MOMENT OF SILENCE
Many years ago, I walked into the bedroom of my 5th grade daughter’s room to straighten it up a bit. As I was collecting and piling Carolyn’s papers into a neat stack, I ran across an assignment from school titled, What I Am Most Afraid Of. Since my daughter rode horses at the time, I expected to see “being thrown by a horse” or maybe “boys.” Instead, in her neat cursive writing, I saw the words, “My mother’s lupus.” At only 11 years old, my eldest daughter had seen me hospitalized and very, very sick on too many occasions. Today, at age 31, she still regales others with stories from her childhood, including the time when she was only two and I was too sick to get out of bed and make her lunch. Little but resourceful, she used a plastic knife and made her own peanut butter sandwich, then crawled back into bed with me until her father could get home. These are not normal childhood memories, unless you live in a household impacted by disease or injury.
The first part of my life was mostly carefree and happy. When I look back, early adulthood was nearly a cliché: I was the high school cheerleader who fell in love with the big, handsome football player, married and dreamt of our happily-ever-after life—the jobs, the house full of kids we’d have and all of the activities we’d do as a family. Yet life had a Plan B in mind. This new plan included a life-changing lupus diagnosis at age 25. From that point on, my husband and I coped with symptoms and treatments and hospitalizations. Left unable to conceive by powerful medication, we adopted our two beautiful girls.
I’ve lived with this cruel and mysterious disease for over 30 years and it constantly tries to rob me of my energy, my happiness and my joy. But I am not one to give up and neither are many others affected by this disease. We hold onto hope and the belief that new and exciting research will be done and new medications will be created. We hold onto the hope that improved treatment and early diagnosis will provide us a higher quality of life. That hope sustains us and gets us out of bed in the morning.
The work we are all here to do impacts the lives of patients and their families living with illness and injuries. It offers hope for better futures. I ask that you join me now in a Moment of Silence for all those past, present and future who will encounter this disease.