February 6th 2016 I knew you were experiencing some pain at Dad’s 50th Birthday Celebration. Did I think it was cancer? Umm No! I thought it was exactly what your pediatrician said it was, a rare form of scoliosis. I didn’t think much about the pain you were experiencing because you are very dramatic and over the top. You still were playing sports and dancing all over the place, so I was sure your back pains were minor issues that could be worked out with some medication or something, I didn’t know. And plus why would you out of all the bratty 13 year olds in the world get cancer???
Even when you had to go to Children’s Hospital on February 10th, I still didn’t think it was cancer and neither did you or anyone else. Later that night when I found out you had cancer Journey my heart was broken, but you didn’t find out till February 13th. I thought somehow you would be ok never did I think stage four, (found in your lungs, bones, liver, and kidney) extremely rare, and you would be given five months to live. I do remember thinking that your life was going to be a lot different, and it was. Once you got the news you had a positive attitude and out look, but there were many adjustments that had to be made. You couldn’t go back to school because of the germs. Let you tell it everyone treated you like a baby. You had to go to chemo therapy on Mondays, you lost all your hair, you couldn’t sleep alone, you couldn’t close your bedroom door, you had to change your diet, you couldn’t walk for long periods of time, and you had to take a lot of medication. That’s just some of the many changes you made in hopes of getting better. Reading the Body Reader this semester in my GWST class makes me think about you a lot Journey and all your body went through in these recent five months. You reminded all of us that we didn’t have cancer so we couldn’t understand, but this book helps me understand you and everything you went through just a little bit more. You experienced the problem of losing control; you couldn’t walk for long periods, or stand up to long but you tried to fight through it and act like you could so people who didn’t know you like we did could think you were ok and not “that sick”. Remember when Tommi came to Children’s Hospital to visit and you stood up for 10 minutes to take pictures and as soon as she left the room you expressed how much pain you were in just from standing? It was all out of your control. Or remember when we went to the mall and you fought with Kira for 20 minutes because you didn’t want to use a wheel chair because you thought you could walk for hours, we all knew you couldn’t. You also felt like your body was failing you a lot of the time when you were in pain even when you had taken your medication and did the things your doctors and holistic doctors told you to do. And toward the end you began losing desire. The things that were once soo important to you became irrelevant in such a short time, like your phone for example. In the last weeks or so you no longer got on your phone, you put it down and never picked it back up again. Social media such as Snap Chat, Twitter, and Instagram no longer was important. Not once did you talk about new followers or your THOUSANDS of old ones that you already had. Just looking back, from February through May, at all these things that were very important to you even while you were sick. You use to tell me the clothes and shoes you wanted and I would go buy them for you. Once your cancer began to spread even more you didn’t want to wear clothes because they made you hot and irritated you even more. You stopped talking about social media, clothes, and even getting better because you were in so much pain. I know I will never be in your shoes or go through what you had to go through Journey, but all that you went through in five short months helps me understand the body just a little more. I understand now what the book is talking about when it states “The body is not mute, but it is inarticulate, it does not use speech, yet begets it.”
This was so painful to read. I cannot begin to imagine the pain you must have experienced in that time. I am sorry about all that and hope you continue to be strong for yourself and for her as well. “The body is not mute, but it is inarticulate, it does not use speech, yet begets it.” I too have also come to understand what the book meant
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