We're all allowed to have bad days, and we all will have bad days. My mom says that "it's how we rise to meet our challenges that defines us", I think she might be on to something.
Every day seems to be a challenge for me right now. I go to bed desperately hoping to wake-up and things will have changed, only to discover that the change wasn't in the right direction at all. I wake up with tears in my eyes wondering how I'm going to make it through the first hour of the day never-mind talking about any evening plans. Even though I have an extremely short 1.5hr school day, I haven't even been able to make it there this week. I tried today because the class has nominated me for the Empathy award, and I didn't want to miss it because I really appreciated them thinking of me. Especially since it's almost November and I haven't put in a full day of school yet this year (or in a full year!). I didn't make it to the assembly.
Empathy is defined as "the ability to understand and share the feelings of another". At first glance, you're like "ok, that sounds so simple", and maybe it is in natural day-to-day situations. But my situation is anything but ordinary, which starts to complicate the idea of empathy. Sure, you hear me (or read me) talking about my Crohn's Disease symptoms, my heart issues, my experiences of bullying. Those are things that I can talk about without really talking about my feelings. I'm afraid that if I did show my feelings that I could easily shatter there's just so much there. But in order to have empathy, we can't be afraid to tell the truth about our feelings.
The truth is most days this disease sucks. Yes it has taught me a lot about life, about who I am as a person, about compassion for others, but the cold hard reality is, I feel physically horrible. I stay positive, just looking at my blog you can see that, but that doesn't change my nasuea/vomiting, my bleeding, my pain and exhaustion. I want so desperately to achieve remission, but everyday it seems like such a distant dream. I keep holding on to the hope though that one day this will be possible for me too.
I want to have a chance to do normal kid things. This weekend is Halloween and I want to be able to go trick-or-treating. If today and yesterday are correct at predicting the near future, I'm not sure I'm even going to be able to get out the front door. It actually brings tears to my eyes to even think about Halloween. And while I do want the candy, I just really want to get out there to do something that all of my friends are doing. I'm terrified of letting others down on holidays like this, or Christmas Days when I have to go back to bed, or Easter weekends when I'm hospitalized.
Without my NG Feeding Tube taped to my face, I look normal enough. People comment on how good I am looking, how "healthy" I look with the weight gain. What they don't realize is that I have vomited blood and continue to have tiny bleeders in my stomach. That the moment food hits my stomach, anything can and does happen. That the pain in my legs wakes me up in tears at night. That my insides were at one point so messed up, that they were considering another major surgery which would have had dramatic consequences. They don't know that the weight gain isn't "healthy", it's from some unknown cause because I'm not eating and no longer getting all my daily calories through my tube. I'm thankful that I look good but it's 100% not an accurate picture of how I feel.
I'm hoping that by sharing some more of my experiences with Crohn's Disease that I can help to create some more empathy in this world of ours for people living with chronic disease. While you can't walk a mile in my shoes, and I wouldn't want you to, you can learn about what it might be like to have this be your reality. After all, the only way to encourage empathy is through awareness and you need awareness to create empathy. Please don't stop trying to understand the lives of others, together we can come together to make this world a kinder and more supportive place!
I'm hoping that by sharing some more of my experiences with Crohn's Disease that I can help to create some more empathy in this world of ours for people living with chronic disease. While you can't walk a mile in my shoes, and I wouldn't want you to, you can learn about what it might be like to have this be your reality. After all, the only way to encourage empathy is through awareness and you need awareness to create empathy. Please don't stop trying to understand the lives of others, together we can come together to make this world a kinder and more supportive place!
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