- I write a blog read by thousands across the world to advocate and change the treatment in healthcare settings for adolescent and young adult patients.
- At fourteen I founded an online support group for teens and young adults with feeding tubes so that they could feel as though they are not alone in all this.
- Almost seven years later that support group has served and is still serving more than five hundred young adults from nearly twenty countries.
- I still maintain a GPA worth celebrating while achieving an undergraduate degree in psychology while many with my condition are unable to attend school at all.
- I am loved by my friends and family for being the person I am without any exceptions.
Now please hear me out. Even though I do not believe I am doing enough, I am still proud of these very things. Those accomplishments were achieved because growing up my mother ensured I worked hard to be more than my disease. By all standards my mom wanted me to live a typical life, so she pushed me to fight beyond what I was feeling in order to do what I could when I could without allowing myself to be held back. (And mom if you are reading this please know how I feel is not due to any failings on your part. You did exactly what you should have done. You tried to give me a relatively normal childhood. You gave me a sense of normality and for that I am thankful. It was exactly what a mother was supposed to do.) I never once used my disease as an excuse for a reason as to why I could not do XYZ. Early on it was made known to me that my disease was not a barrier for my dreams, which is an important distinction for a young person with a chronic health condition or disability.
However, pretending one is able to ignore their disease can also be detrimental because it makes that person believe they are supposed to have it all together in the same order as their able-bodied peers. Somehow I fell for this twisted mindset. I fell for the idea of how I thought things were supposed to be and thought if I could keep pushing through, then I too would be able to meet those same standards as my able-bodied peers. This belief made worse by the thought I could always be doing more if my body was not putting limits on me, my perfectionistic personality coupled with the comparisons I make of myself to my able-bodied peers is why I struggle so deeply with doubting my abilities. This way of thinking made me believe I needed to prove to everyone else that I could do what my able-bodied peers were doing. It is why I am the kid who went to take finals while falling into the downward spiral of septic shock, that could have easily taken her life. It is why I felt guilty for postponing an exam after being diagnosed with a brain injury. It is why I never let myself take a break from trying to accomplish my goals even when my health is trying to pull me under. It is why I am the person I am today. Through all of these things, I have come to realize I will likely never measure up to those same standards held by my able-bodied peers and that is okay. Maybe if I did not get diagnosed with a brain injury I would have done better on that exam but that is not how my life happened. I need to quit thinking I was cheated of something I thought I deserved because I thought my life was supposed to be different. That's not true. My life was supposed to be exactly how it happened and I happened to get sick. That's just how things worked out. So instead of focusing on doing things the same way as my peers, First recognize that my disease does not block me from reaching my dreams. Then acknowledge the limitations my body has placed on me rather than pretending like they do not exist because I can still make a difference even with a little extra help along the way. My work is no less important because I need accommodations. What work I am doing is still filled with value. Celebrate the accomplishments in your life, even the small ones. And remind yourself just how worthy you are, even on the days when you don't feel like it.
