I read an article on Huffington Post about things people with Crohn’s disease want others to know. All were true, and most were things mentioned in other articles. But a comment caught my attention:
My son was diagnosed at age 7. We need to educate/inform and raise awareness not by saying how horrible their future will be but more on how to cope and educate others! (Carla DiNatale Smith)
This made me think of something I noticed at a CCFA walk. As I introduced myself to other walkers around me, I met several who were walking for/with their children who have Crohn’s. When I’d tell them that I’ve had Crohn’s for over 20 years, they would get the strangest looks on their faces.
It wasn’t until later that it occurred to me: they were imagining their own children 20 years down the line and wondering how things would be. Was I a good example? Did what they saw in me give them hope for their own children? I don’t know.
But, after reading Carla’s comment on Huffington Post, I decided I would make a list of some of the awesome things that have happened since my diagnosis when I was 23 years old.
I met my husband and got married. And this was years after my ileostomy surgery. Maybe it seems silly in the face of life-threatening illness to worry about dating and marriage, but, if you’re newly diagnosed and single, it’s one of your main concerns. My husband is awesome, and he takes care of me. After 15 years, we still want to spend all our time together. Pretty cool, huh?
I’ve travelled. Chicago was cool. New York City was awesome. Denver was beautiful. And there’s Albuquerque, Atlanta, Mobile, Nashville, Gatlinburg, North Carolina, South Carolina, and other places I’m sure I’m forgetting. I’m still trying to get up the nerve to fly over the ocean, but I’m going to do that one day, too. Oh, and a cruise. Gotta go on a cruise some day.
I’ve made lots of new friends. Sure, there were people who dropped away when I got sick, but I’ve got so many more truly wonderful friends now. They are people who support and pray for me through everything.
I’ve discovered work I love. While I’m sad that I’ve had to stop full-time work, I found a field – web development – that I love. I don’t geek out over anything as much as I do a working web app that I made.
I’ve listened to incredible music. I’ve seen Adele in Nashville. I’ve seen the Avett Brothers at Red Rocks. I’ve seen Ed Sheeran, Sam Smith, Snow Patrol, Dave Matthews Band (13 times!), Motley Crue (okay, that was for my husband), and many more. I sing in the car. I raise my hands and sing to the heavens during worship. Music brings me joy and comfort.
I was diagnosed 24 years ago this month, and there was no one telling me that life could still be great in spite of illness and pain. So I’m telling Carla’s son: Crohn’s sucks, being sick sucks, but there are still good things you can experience. I hope you can look back in 20 years and concentrate on those.