Rant: Because you see me, you cant see me. If you ever ask me a question and I have no traction... that is I dont fully know what you are talking about or I dont have the answer right away... part of me stays there. Some tiny part of me instinctually keeps wondering what you are talking about - or - what my answer is UNTIL I have I have a whole answer OR understand the question. Not because Im trying to manipulate anything , not because Im over thinking.. not even because you are that important... its an instinct often unconscious - so that I will suddenly go OH! and go back to a topic we passed a few minutes ago, a few days ago. Questions stick around... which made me really good at university and really inefficient. The best I can hope for is being able to bite my tongue when; the topic is not appropriate for the present moment, the question was asked such a long time ago that saying something would make me look nuts, you are not only NOT the person who asked the question / but also not the kind of person who would be interested in the answer. The worst part about the times when I dont catch myself is that it makes me seem weird, awkward, immature, unaware, unintelligent. And all the negative impacts that comes with those things. Maturity and awareness... the ability to ask why did I do that? or think before I speak... helps... but even the best filter cant catch everything all the time. Participating on this Advisory Committee, one the of the common interview questions is what is the biggest challenge to your disability? And for the longest time I didnt know the answer. I almost didnt participate because I have a mild for of Cerebral Palsy, so even my challenges arent that challenging. Some pain, some fatigue... etc. etc. my big challenges dont seem that big. This morning it dawned on me. The subtly different has a profound impact. I am constantly living an experience of being labelled, misread, and mis-known by other people - and incessantly having to choose whether to explain or let it go. And most of the time explanations are met with anything but understanding. My least favorite is sorry, didnt mean to make you mad - when Im not mad Im just trying to explain that something you threw at me wasnt true for me. you look tired... are you confused... why are you looking at me funny why are you frowning... is something wrong?.... no, Im not tired... it will surprise you that I am rarely confused... I wasnt looking at you.... I have a funny face... no, and I am not lying! But I am babbling... 1. I am a hemiplegic, partially paralyzed from head to toe on the right side of my body. Varying motor control, intermittent pain, random tightness and numbness, spasticity. 2. 80 percent of communication is body language. 3. When your words dont match your body / face people trust their read and not your words. 4. My posture and face is affected by impairment OR managing pain. The whole right side of my face is a little weaker and numb. Depending on how tired I am I manager degrees of asymmetry. This affects the tone of my voice and the look on my face. My right arm, shoulder, torso can go limp or relax if I am not consciously holding a posture. My eyes dont work together, but the both want to work. So, I blink and do a quick look around.. or have to look anywhere but your face... to be able to focus on what you are saying. The one thing that consistently throws my left eye to the side, is your healthy eyes looking right at me... and the only way to rope it back in is to look away. My leg and foot get pissed off... randomly agitated - and it really is random... so I may wince, change my posture ... hold my breath for a second. But Im not upset.. because the pain is chronic.. for me its like sneezing... or having my mouth full... is not like being in pain. Hence, I really am fine. But its hard to talk with your mouthful... and the subtle global impact of mild cerebral palsy is so many cookies constantly being chewed on... that yesterday was the first time someone accurately read the way I move - ever. And its interesting because Mr. De Geest doesnt have much body language - he was born with no arms or legs. The most profound challenge is that because you see me, you cant see me - I do not get to have body language. Walking through life 80 percent of what people see of me does not reflect my thoughts or feelings or self. Yet, when I say no, it makes me defensive or angry. And every day all day I have to decide if Im going to explain or let it go because people really like telling me how I really feel. Most of the time I let it go. So, if you think I defend myself a lot - consider that I actually let myself be misperceived most of the time... I hold my tongue ALOT. Im not angry - Im just not all the other things you may think you see. It is isolating. But my body is lying to your instincts. So, I am grateful for those people who trust me - and take the time to get to know me.
Posted on: Thu, 06 Mar 2014 14:45:55 +0000
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