I have a lawn to mow. Dog poop to scoop. Laundry to do. Walls to wash. Rooms to vacuum. Instead, I felt magnetized to my computer. To my blog page. To this posting.
Somewhere in all my "words" I have found a sort of therapy in writing. I think it's just getting stuff out and letting go, but whatever it is, you're cheaper than therapy and I don't have to hear how messed up I am. Win-win for me! And since you are cloaked in anonymity, I don't have to be embarrassed by my thoughts. Chalk up another win! AND you don't have to read my ramblings if you so desire. See? We ALL win. I get more wins, but it IS all about me anyway, right?
A disease runs dominantly through my biological mothers side of the family. It's a disease that hits your brain. It's called OPCA and I have been showing symptoms of it over that last few years. Little things. I don't run any longer. I can't. My body doesn't work that way. I stammer in my speech. It requires cognitive thought to master stairs. Blah. Blah. Blah. The list is long and cumbersome. In the whole scheme of things, who cares? It wasn't like I was some high jumping, run everywhere kind of girl to begin with. Right?
Who needs to close the garage door and try to jump over the sensor just to end up ramming their head into the garage door and rocketed to the ground so hard that their body bounces upon landing and looks around to make sure NOBODY has seen the theatrics and climb humbly into their jeep humiliated beyond words and then tells the family to gain a bit of sympathy and have to leave the room because they are laughing hysterically at you? Not me. I don't need that.
I went to doctor and was referred to the University of Utah to be seen by a neurologist. I had to gather all my medical information that I could find, fax it over to them, then a team of VERY qualified doctors go through the cases and the physician best suited to take your medical dilemma gives you a call and gets the ball rolling. Doctor Summer Gibson is my new best friend.
Young. Smart. Empathetic. Did I mention she was smart?
My family attended the appointment with me last Tuesday. I'm not sure if the office workers were prepared for the Deason entourage. There was standing room only as I spent about an hour with her asking me all sorts of questions and then pushing here, pulling there, "let me watch you walk", "can you feel this", "can you do that".
I kept my eyes focused on her. At one point when I "performed" poorly on a test, I glanced over to my family. I lost it for a minute. I hate seeing the fear in their eyes. I DESPISE that I am putting them through the pain associated with my ability to do less and less.
When the doc was done questing and testing, she said "Although you show many symptoms of OPCA, you have many that are not classic OPCA. You have symptoms of other brain diseases." I wasn't prepared for THAT statement.
I have dreaded getting an actual diagnosis of OPCA. It's such a nasty disease. But when I asked what she might be looking for, her only response was "they are diseases you don't want to have." Ugh.
I left with even MORE questions and less answers.
So I have cried and worried and fretted and raged and pondered and wept and hoped and believed in better this week. I have tried not to feel guilty when my family struggles or cries or yells.
I haven't been afraid of much in my life. I fear this. At times I am frozen with fear. I learned to fight many, many years ago. I'll continue fighting. I need my family and loved ones to know that. To believe that I won't give in. I still dream of a fairy tale ending that finds me old and feeble watching my grandkids rule the world. I plan to be a "based on a true story" event that requires good popcorn and a large coke.
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