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Wesley s Story

Charleston, SC USA


"When one looks at me, you may get a small glimpse of my personal struggles. I was born with a genetic disorder that altered the dynamics of my family. My name is generally attached to a lot of 'medical problems' that one can visually see. But, interestingly enough, I would be damned to let my physical appearance or capabilities define me. What I just mentioned is what you can see. It’s my 'visible illness'. But, what one cannot see is the fact that I handle everything with worry and my guard is always up.


I remember coming home after two months spent in the hospital and, as a consequence of a horrific surgery, I was left temporally paralyzed. My vocal cords and ability to eat were both obliterated. For a long time, I was using my own form of sign language to communicate, and writing down everything for others to understand me.


Shortly after returning home, I was sitting on a stool in my kitchen. I’d become in love with the fact that my ribs were so superficial and I had become so skinny. It was something I could control. I was learning to eat again, but my eagerness to do so was non-existent. My brother yelled at me and his eyes teared up after I used my fork to mess around with the food placed in front of me rather than attempt to eat it. I snapped out of it.


From then on, I did everything in my power to eat again. But, my obsessive thoughts didn’t leave me. My scars from this experience heightened my already worrying mind, my ability to trust people became increasingly harder, and my life has since never been the same. Regardless of the years that passed, a confidence was stripped from me that I have tried to get back.


In so many ways, my wounds seem still so fresh. To this day, my thoughts are flooded with worry and my personal insecurities dominant so much of how I act. I have become a master at concealing my anxiety to the outside world. I wear a mask to protect my own feelings and I smile in an effort to divert conversations I am uncomfortable with. I despise hearing other people complain. I feel expressing my own pain would define me as a complainer and a big ol' hypocrite. If you knew me well, I bet you'd tell me I worry too much, I sacrifice too much, and do parental duties far too often. I am guarded and not one who expresses opinions easily. But, I don't give people the chance to get that close to me, so most would not know that about me.


My father is an alcoholic and his decisions have influenced my outlook on life, and have permeated it in a number of facets. I thought he was 'taking the easy way out' drinking his problems. I now know differently, but it still hurts me that I have yet to 'fix him' and I am so violently influenced by his actions. As a consequence of his alcoholism, the sound of ambulances scare me and the absence of a phone call leaves my mind drowning in negative thoughts.


Part of my struggles are written all over my face. But, the part that people don't see is the struggle I am dealing with internally, and honestly no one gets the gravity of my physical limitations either. It’s embarrassing that I am not fully independent. But, I also know I have attracted some of the most incredible people for looking different. Because I'm a person who worries about other people’s perception of me, I will never accept help especially in regards to my 'illnesses'. Both visible and invisible.


I have become the girl whose life is a life of giving, until I have absolutely nothing else to give and nothing left of my own. I make excuses for people in my life, try incredibly hard to rationalize all that I have become accustomed to witnessing, and told myself over-and-over again - maybe, just maybe, the pain I'm being exposed to will soon change.


But, maybe it's me that needs to change? Maybe, I should let people in. Maybe, I should accept help. Perhaps, my mind would run a little less and my worries would disappear a time-or-two. I may never know because the walls I have built will likely keep me from exposing what's really on my mind."

Photo by: Jesse Volk

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