Thursday, March 3, 2011

I am not my Disease!!


I was watching an episode of Royal Pains the other night and it was about a guy who had MS. His motto was "I am not my disease".
How true this stands for anyone with any type of illness. I know for me I hate being known as the girl who has the brain tumor. Sometimes I feel like people think they have to treat me special or talk to me like differently because of my condition. While others avoid me altogether. Hey - it's not contagious!!
I can assure you, while yes I do have brain damage, I am fully capable of comprehending what you may be saying to me and I can do almost anything that anyone else can. I may have to write myself a note or two to remind me things so I do not forget, but if I tell you I will do something I am going to do it to the best of my capabilities and then some. Partially because I am a little, ok a lot, controlling and I never want anyone to think that I am MY disease.  I may not remember who was in my senior class ** years ago or what I wore to work last week, but hey I have brain damage remember??
You have to learn to become your own advocate when dealing with something as unique and unknown as myself. No one knows your body more than you and the more you educate your self on your condition, the more you will be able to determine what the best action for treatment is. You have to educate yourself, become familiar with your disease and research all options for treatment. You DO NOT have to become your disease.
When you become your disease you admit defeat, you give up and you let it control your life. I truly believe that your mental state and outlook is over 90% of your battle.
Yes, I have really bad days. Yes, sometimes I wish I could just crawl back into bed and stay there. Yes, there are days where I throw myself a little pity party with party hats, streamers and a guest list of one. But these days are far and few between. Because when I get like this I have to remember that God put me here for a reason and He blessed me with this for a reason. (Oh.. and I am horrible at pity parties.) So I just have to pull myself together, put on my big girl panties and deal with it.
Several months ago when I found out that the tumor was back for a third time. It is bigger, badder and it brought two of its friends. I have to admit - I freaked, had a long pity party, freaked a little more, cried daily and then I was able to finally pull myself together. It took me a while before I would even tell anyone outside my immediate family because I did not want to have to answer a thousand questions, be looked at as poor pitiful Jessica and I was afraid. Maybe if I did not say it out loud it would just go away. WRONG!!
But going through this process made it easier for me to face the facts when I did decide to start telling close friends and extended family. It was almost like I needed to grieve privately first so that I could prepare myself for the overwhelming whirlwind that I knew was coming.
I am horrible at sharing my feelings publicly and when I am forced to do so I often cave emotionally.
Thankfully I do not have to do it alone as I always have God by my side. To laugh when I laugh and cry when I cry!
Many Blessings!

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