I’ve been pretty silent on social media over the past couple of weeks, even through Hippo’s birthday and my friend’s fashion event. I haven’t journaled about coaching or anything. Why? I’ve been unsure how to proceed with my blog and advocacy.
A few days before Hippo turned 6, one of my subscribers that I often converse with lost her son to complications from Inflammatory Bowel Disease. He was 6. He wanted to be Spiderman when he grew up. He loved reading and his friends at school. He was diagnosed at 2. He died at 6.
When his mother emailed me with the news, I sat staring at my phone for 15 minutes. I didn’t even know how to respond. I was so angry for her. I was so angry for him. My heart was broken for him. My heart was broken for his siblings. My tears fell for him. My tears fell for his father. It was so unfair. Little Spiderman wanted to be a superhero when he grew up. His mother once told me that he told her, he wanted to be Spiderman because Peter Parker could never get colitis.
It wrecks me to think of a child, living through the pain and pressure I’ve endured as an adult patient. I was diagnosed as an adult, so to think that there are children that won’t get through high school without complications to be able to do the normal things all high school students get to do. But now I know of a child who has been taken by this disease. Unfair doesn’t even cover the emotions I feel. It’s an aggressive combination of anger, guilt, sadness & fear. One of the hardest things about advocating for something you suffer from is the survivor’s guilt . I know I came extremely close to death and when I hear of other patients dying, I wonder, “Why me?!”. Not that I’m ungrateful for my life. I’m blessed to be here to raise my son and advocate on behalf of patients…but why does anyone have to suffer and die from IBD?! I remember years ago a man with HIV saying to me that the scariest thing about living with HIV was knowing that there were people out there dying from what was living inside of him.
So, needless to say, that with the death of Spiderman, it’s been hard to be positive about living with IBD. I’m just so frustrated with the lack of awareness, funding, research & support that this disease gets. There are 1.6 Americans suffering from this disease that attacks the entire body…but if I say, “Ulcerative Colitis” only 2 out of 10 people I say it to will actually know what I’m talking about. But as I’m typing this, I realize, THIS is exactly why I’m advocating through my blog, on The Hill, in the street, at church…everywhere. I can’t stop screaming about the residual effects of the inflamed gut. I can’t stop being positive and spreading hope. I can’t stop being a voice for those who can’t speak any longer. There will be a day when no one will die from anything related to IBD.
I am really sorry that little Spiderman passed away. But his light was so bright that it would shine through his mommy’s emails. His spirit will continue to live on as long as we fight toward making sure that each patient has a better quality of life and a cure for their illnesses. My little Spiderman and all of those who have lost their fight with IBD will continue to live in on in our hearts and be the driving force behind our advocacy.
Goodnight, mini Peter Parker. Love you, buddy!