Humans of ME/CFS
Losing my father was an abstraction until now. I’ve sent my share of heartfelt sympathy cards to friends whose parents passed away, but only now is it possible to prepare for my own inevitable grief. I am confronted with a nightmarish scenario. My dad is in a nursing home, bedbound, blind, dying a slow lonely death due to congestive heart failure and complications of diabetes, but I can’t be there with him. I can’t hold his hand to comfort him or play CD’s of his favorite Beethoven symphonies. I can’t listen to him recount the stories I’ve heard him tell a million times or laugh at his corny jokes as I had always planned. Why not? Because I am too ill to travel cross-country due to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Even a brief phone call with him exhausts me. I am a former Triathlete who worked full time, travelled, and climbed Mt. Kilimanjaro. Now, I am completely dependent on my husband to care for me. I feel isolated and lonely. It depresses me that research funding is so sparse when so many of us suffer. It adds to my hopelessness. So, I hope this campaign will result in funding to help discover a cure.
Chronic Fatigue Syndrome makes a difficult situation unbearable. It devastating to be so incapacitated that I cannot be present to help care for the remarkable man who loved his children unconditionally. Dad worked three jobs so that my siblings and I could get a college education. He always offered encouragement and gave sage advice. From day one, dad put us first, and yet I cannot hug or kiss him one last time before he crosses to the other side due to a common, little-known, incurable, mysterious illness. A perverse illness that has drained me of all my energy and kept me housebound for 12 years. It torments me that I cannot say goodbye to my beloved father in person or attend his burial.
I told dad that I wished I could be there to help him and he replied, “I wish I could be there to help you.” Selfless to the end he is, and I will miss him terribly.