“Mostly dead is slightly alive.” This is a line spoken by the medicine man, Miracle Max in the classic film, The Princess Bride. For me and for many people who have Myalgic Encephalomyelitis, it is how we feel most days of our lives.
I was a vivacious and fun-loving person who enjoyed being an active part of my husband’s and children’s lives. I loved volunteering at school, gardening, and vacationing with family and friends. In September of 2013, with the onset of a virus, Myalgic Encephalomyelitis (ME/CFS) took over, leaving me trapped in a broken body with little hope of recovery. I would estimate that I was left with about 5% of the strength that I had previously.
Nearly bed-bound with constant flu-like muscle weakness, I pushed myself physically to see doctors and specialists of every kind, attempting to find answers. Every doctor’s appointment left me exhausted and heartbroken with disappointment. So few doctors know anything about this debilitating disease. All of the knowledge that I use today to manage and cope with my illness has come from other caring ME/CFS patients from all over the world who have shared what they know and what works for them through online support groups.
My heart hurts for those who have been waiting as many as 40 years for proper care, research, and treatment. We deserve better. We deserve to not be dismissed. We deserve research to seek answers. We are not dead. Mostly dead means slightly alive. As long as I am slightly alive, I will continue to tell my story. I will continue to tell the stories of those who don’t have the strength to speak for themselves.