"Cause you had a bad day/You're taken one down/You sing a sad song just to turn it around"
Everybody has bad days. What are your bad days like? What helps you get through? Does it help you to know that even on what you would call your "worst" days, there are always people out there who have it just a bit worse off than you? It's all about perspective.
As an outsider looking in, you might say my life kind of sucks. I drew the short straw in this game of life. That it's unfair (and you'd be right, no child should ever be sick), that you feel sorry/bad for me, etc. I don't feel that way. At least most of the time I don't. Let me start by explaining what one of my bad days might look like.
My bad day story: I have difficulty sleeping, by 5am I drag myself and my IV pole out to the living room. I have so much nausea that I just want to stick my head in a bucket and hold my conversations from there for the rest of the day. I've already been to the bathroom 3-4 times and I have to go yet again, the effort it takes to get there is exhausting. I'm so dizzy that my IV pole seems to be the only thing holding me down from spinning off this earth. I can feel my heart racing and I want to just pass out. When I go to empty the contents of my ostomy bag, I end up getting covered in poop (happens more than I care to admit). I rest most of the day, feeling like this and then I decide to do something "normal", I go to a concert. As I'm sitting there in between bands, I'm feeling worse and worse but my mom bought these tickets for a band I really wanted to see and I'd feel like I'll disappoint her if we leave. All of a sudden the dizziness goes from a level 10 to a level 20. My vision and my hearing have gone "dull". My mom tells me that she was asking me things but I wasn't responding. She said that it was at this point that I started slumping forward. She all but carries me to the medical team at the concert venue. I throw up. The EMS on site is very worried about me. I get shipped to the hospital and learn the terms "hypertensive crisis" and LongQT Syndrome. That was a bad day, after all, I missed the concert! What made it worse was this was the second concert I missed out on, the first being a few weeks before at the Ed Sheeran concert.
Despite days like this, including how I'm feeling today, I still don't think my like kind of sucks. I've met a lot of wonderful people along this journey. Complete strangers who have reached out to me with kind words of encouragement which has come to mean so much. I've learned a lot of valuable lessons. I've learned about determination. You need to have determination just to make it through each day, but more than that, you need it to "live well". I've learned about courage. It takes guts to talk about your guts, your poop, your ostomy. It takes strength to make it through 11 scopes in 3 years and 1 major surgery. The thing I learned most though is compassion. It takes compassion in order to make this world a better place. It takes compassion to be able to help others in a deep and meaningful way. It takes compassion to build a better world. These are wonderful gifts that this disease has given to me and which has inspired me to want to help other kids to make their "bad days" a bit brighter.