God, where the fuck are you?

No more than five minutes ago I posted a status on facebook about how I really want to go to burning man. As soon as I began to scroll again through my feed I saw a picture of a thin and frail boy bracing himself on the bathroom sink. He stood there in nothing but a pull up. His hair was gone and on his face he showed defeat. Seeing this photo immediately threw me into a deep flashback of myself...
      I was sitting on the edge of the bathtub fully naked and bald. My eyebrows and eyelashes were gone. My cheekbones sharply stuck out of my face. My eyes seemed to have sunk into my skull. The only thing covering my bones was skin. I could see every detail of my spine.  As I sat there waiting for my parents to lower me into the tub I watched myself in the bathroom mirror that covered the entire wall above the sink. I made eye contact with myself and my chin quivered as I choked back tears. In that moment that was my reality. In that moment I was not taking things day by day, but rather, breath by breath. It was raw and sick.
       As I saw this boy I immediately knew what he was feeling. I knew his reality. I wanted to reach into my phone and hug this boy to comfort him. Not that I would say anything to him, because really what can I say? I can't tell him that god is with him. I can't tell him that all of this is happening for a reason and I wouldn't dare insult his existence by saying that he chose this for himself before coming down to earth.
       I am tired of seeing this unnecessary suffering. There has to be another way. There are 15,780 cancer diagnoses in children from the ages of 0-19 PER YEAR. 1 out of 8 children with cancer will not survive. ONE OUT OF EIGHT. Unacceptable. Every day FOURTYTHREE kids are diagnosed with cancer. In the last 20 years only THREE cancer medications have been specifically apporved for children
. FUCKING THREE.
       I guess what I am trying to say is, I am thankful. I am so fucking thankful. I am thankful that I can be in a place where I can dare to wish about going to burning man. I forget how close I was to my grave. I forget the complications. I forget that I used to take two steps and loose my breath. I forget that at one point I had to have hydromorphone pushed through an IV every time I went to the bathroom because I was in excrutiating pain. I even forget my finger nails falling off and my skin falling of in thick chunks. I feel that if I didn't have my physical disabilities to remind me, I would forget all together how fucking miserable I was. The body is amazing and my brain helps me forget the years of nothing but torture. Though I forget, there are thousands of little angels on this earth who still live this reality and many who never make it out.
     To the little boy named Drake from Texas, keep fighting you sweet soul. You can do this. Everyone is here rooting for you. I send you all my love and healing energy.. You are a fighter.

(all stats are from curesearch.org)












   

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