Consuming the cascade of inspiration
A lack of emotion,
Seek intrepid words and write them all.
Clutch digital ideals in impotent spaces.
Space filled with toys, consuming
constant orgasm brain stimulated.
time to the ultimately unimpressed.
Prompt a word with a picture too,
never connect them.
I discover and waste my ideas.
Not a block.
An expletive I toss to the unfortunate
Find what you will,
I escape to find my own.
As a small child the only thing I knew about surgery was that I got a cool present after. A My Little Pony coloring book to be exact. And when i got back to school I would have an awesome new cast for all of my friends to sign and draw pictures on. My mother gave me lots of extra attention that I didn’t normally get and I thought that was just great. I could ask for just about anything I wanted and she would rush to my side. What 5 year old could ask for any better?
I never perceived my predicament as an illness or a problem. No, I was just special. Mom says that almost nobody else is like me. I have a rare disease…a novel, obtuse thing that provides me with all of the attention and presents I could ask for.
Now, six surgeries and decades later the novelty has evolved into a giant pain in my ass. Or leg rather. I have a rare benign bone disorder called Osteofibrous Dysplasia. Up until I was about 18 it constantly grew back resulting in a bowed tibia and a terribly weakened bone. Surgery after surgery was done to try to remove the affected area and it always came back.
Doctors now know much more about the disease than when I was five and strongly recommend avoiding surgery if possible. Would that knowledge have stopped the countless surgeries all those years? Maybe. Am I bitter? I try not to be. It’s difficult to say what the doctors should or should not have done. After all, the tumor spans over 2/3 of my tibia and has resulted in fractures.
Nonetheless, I now need a rod in my tibia to stop the bowing and strengthen my tibia. While I am very glad that much of my daily pain will go away as a result (not to mention the tumor is pretty much gone), I am freaked out! You’d think I would be used to surgery by now, it turns out I am not! Not only do I have the procedure itself to cope with, I will have a six week recovery time. Oh and did I mention I have a three year old daughter?
I have a wonderful husband and family as a support system but I am still worried. I am going to have no control of my life! Well, what books I need to read but that’s about it. Searching online for others stories and how to cope with a rare disorder has been fruitless. I also wanted to know how other parents deal with recovery and still manage a toddler! So I have decided to start a sort of surgery journal. An outlet for my experiences.
My surgery is September 13 and I’m it for the long haul!