I'm 40 years old.
My dad died when he was 47. He was diagnosed with about half of the things I've been diagnosed with, and probably had many of the others that he was not diagnosed with. The last thing he was diagnosed with was stage 4 Adenoma Carcinoma (cancer), Primary Site unknown.
By the time he was officially diagnosed, it was too late. He had been seeing doctors for a variety of ailments, but they never seemed to know what was wrong with him. He became disillusioned, and stopped putting any faith in doctors. The night mom called me to tell me dad was not well and needed to see a doctor, I had to have a long talk with him. I urged him to go the Emergency Room. "They never know what's wrong with me," he said, but went anyway. I understand where he was coming from now.
Losing a father at such a young age (an age I am quickly approaching) changes how you view life. My dad's father had died at the age of 57. Dad was always concerned about not living past 57. I have a concern about living past 47. I can't explain it. It's just there.
Living with chronic, and often unexplained illness takes a toll. You feel the symptoms, but they can't be explained. You go to doctors, but they explain things away, and simply have you try different things that may help temporarily, but then do not help with the other myriad of symptoms you also have. And specialists rarely try to put all of your symptoms together. "That's not in my field."
Dad, once he was diagnosed, was told he could go back to work until treatment started. He never went back to work. Mom called us and let us know Dad was failing fast. When I saw him, I was devastated by how bad he looked. We took him into the ER that night. He told us that we must simply take each moment as it was given us.
I returned to the ER that night when the morphine drove my dad into hallucinations and he tried to escape the hospital. I had to convince him that he needed the oxygen he was trying to avoid, and helped him put the tube back in.
I now live with chronic illness, as my dad did. Am I more sensitive to findings on reports, symptoms as they occur, and doctors who don't seem to listen? Yes.
But let me make something clear...I don't fear death. I do want to make sure that the time I am given on this earth is spent with me in the best possible health I can have because I want to be available to my family, my friends, my church, the unexpected strangers. But I do not fear death.
None of us are guaranteed another day on this world. We are simply given the opportunity to make the most of each day.
Living with chronic illness can make this tough. I'm a performance based, task oriented person by nature. I often forget my value as a daughter of God, and place my value in what I am able to do. On good days, when I don't have to stay in bed for hours, or take extra medication because of my migraines, I feel better about myself. I struggle with the days where I am bed bound, struggling to fight the urge to seek the guillotine because the pain in my neck and head are so bad due to my migraines and Chiari.
But I know the pain of losing a parent at a young age. I don't wish that for my children. That's why I continue to fight, to seek answers, to look for solutions, even when I'm told there are none.
"God grant me the serenity to accept the things I cannot change,
the courage to change the things I can,
and the wisdom to know the difference."
