Tuesday, March 1, 2011
You see people getting sick around you, you see people lose loved ones, but you never think that will happen to you. You're 22 years old, still considered a baby, you have your entire life ahead of you, and you feel invincible. But one day, one day your life changes. The father you know and love is diagnosed with a disease that will change your lives forever. Parkinson's.
My dad has Parkinson's disease. I've been wanting to write about it, but I didn't know the right time or the place. But today feels right for some reason. I was with my father last night and I realized that it was time to express how this entire situation makes me feel. Currently, I feel confused. I long to be a little kid again, because in my mind this doesn't happen to little kids. I'm supposed to grow up and be an adult now, to face the facts and realize that my father has in incurable disease. Incurable....we are living in 2011, and there is no cure.
So what is this disease? We see Michael J Fox in interviews trembling uncontrollably, and we think that that is all there is to it. Well, I wish it was just a tremble of the hand or leg...but there is so much more to it. My father barely trembles, he has a rare condition in which the worst part of this disease deals with his blood pressure. His blood pressure reaches abnormally low levels...there are times when the blood pressure reader marks "ERROR" because it is so low that it cannot interpret a reading. My dad feels dizzy and out of breath all the time. He is weak, tired, and worn out. He looks sad, defeated, and this kills me.
Perhaps I should back track and tell you about my father.
Ever since I can remember, my father was a superhero in my eyes. He could compete in any sport. He could beat a kid half his age in tennis. He could run marathons, he could survive in the wild with a match and a pocket knife, he could spearfish and catch stingrays twice his size....he was my own personal superhero. His days consisted of morning jogs and afternoon tennis matches. He would always make us play sports and challenge us to our fullest potential. Saturday mornings consisted of me being dragged out of bed to play tennis...and "earn" my breakfast or lunch. When I was a kid he would go on bike rides that lasted forever. He would let me ride on the handlebars and I trusted him with my life. He did one handed push-ups and could open any jar, any bottle, anything that I couldn't even dream of opening...every hard task would always be passed on to dad, because we knew he would get it done. At the beach he would dive into the ocean and go on hour long swims...swims where I sometimes felt he would never make it back...eaten by a shark perhaps. But he always came back, tired, but ready for the next challenge.He was my superhero.
My father is trapped in someone else's body now. He is a far cry from what he used to be, and this hurts me more than anyone will ever know. I'm 22 years old, and all of this seems completely unfair to me. I want my dad back, I want his smile back, I want him to feel alive again.
We have been to numerous amounts of doctors, they've ran hundreds of tests, but nobody has a solution. My dad takes a cocktail of medication, but he doesn't feel any better. His local doctor has already given up on him, and has decided to drop him as a patient. Who are these people? When the going gets tough lets just give up? Who does that? We work closely with a doctor at Duke University Hospital, but he still hasn't given us any hope. We'll be visiting Emory in a couple of weeks, and other doctors to test for other diseases that may also be playing a role in dads condition. I think this has been the toughest part of the entire process. Visiting doctor after doctor, telling dad's story over and over, and seeing their faces of confusion, because "they've never seen anything like this before".
I watch these ridiculous tv shows, where patients have rare conditions and Dr. House gets a vision and solves their case. I wish Dr. House was here, I wish he could see my dad and have a solution to all of this pain. My dad is a strong man, he has a heart of gold. He cares for his family and lives for his daughters, he deserves a cure. We all deserve a cure, a remedy, the right cocktail of medications. The doctor that quit on us told my dad that he would go back to his normal self once he started his medication. He is far from his normal self, and she should have never told him that.
One thing I do know is that our family bond is what is keeping us all together. We're going to fight this one way or another. Our family has been through so much, and I know that we will stick together through all of this. So pray for my dad, and pray for all of those families out there that are dealing with this disease,