I never really speak about my condition on this space because truthfully unless I am going to a doctor I never really bring it up. To be honest, even at the doctor’s office I’m always wary of bringing up my condition because it is so rare. I have so much anxiety even typing the words of my illness. It just reminds me of all the turmoil my family and I went through in those early years. To say that I am broken is an understatement. Going to the doctor gives me so much anxiety that I just burst into tears.
Some days I’m so downhearted that I can barely get up the energy to roll over in bed. Last July I suffered a stroke-like episode that changed things for the worse. I lost my ability to speak and lost more of my ability to do things on my own. I hate this life a lot of days. Some days I feel like I’m still stuck in October 2010 when this all came raining down on my head. My family has suffered by not only watching me suffer but because they too have lost a measure of freedom and happiness.
I’m not inspirational and I hate hearing that from people. I know it sounds mean but I’ve been through so much and I did not always channel my pain in the right way. Anger about my circumstances consumed me and caused me to internalize my rage which led to me hurting myself. My scars are an everyday reminder of the pain and turmoil I’ve been through. Lots of days I feel like a burden like it would be better if I were not here. But then I think how selfish I must be to think that taking my life would heal my family when in reality it would only break them faster.
The other day my family and I were discussing my condition and my mother revealed to me that people actually laugh when they find out I’m disabled or as they say still disabled. One person said “she’s still claiming that” when my mom told her I lost my ability to speak. For me, I think that is the hardest pill to swallow as someone with a rare disorder. I will always be looked at as a liar because prior to 2010 I was “normal” and now I’m not so I must be a lying. Why don’t people think before speaking? Why cause emotional harm to someone who’s only offense is losing their ability to do things the way they once could. Is that fair? Should I accept this as right and not stick up for myself?
Some days I feel I should not stick up for myself. I feel that maybe I deserved to have this happen to me. Maybe I deserved to lose all my “friends.” Maybe I deserve to have people spread lies about me and strip me of my dignity. I’m lost. To be honest with you I don’t know if I’ll ever find me again. Right now at this very moment, I’m broken. I’m like an overflowing river inside bursting with emotion but I lack the ability to even cry. What should I do in this situation? Where should I turn? What would you do if your life was turned upside down? Would you be able to continue fighting? or would you give up?
I can’t answer those questions right now and that worries me. I love blogging and I love going to events but forgive me if I can’t reciprocate a smile. I’m not rude I’m just broken.