Just before our first wedding anniversary, Bruce spent 16 days in the hospital, including Christmas.
Thus began my education about Crohn’s disease, something I had never heard of until Dec. 16, 1998, when I saw pictures of his ulcerated digestive tract taken during a colonoscopy the day after I checked him into the hospital. He had ulcers from his tongue all the way to his anus.
We’ve spent the past 16-plus years learning about the disease, fundraising for awareness and a cure, and trying to support others who suffer from Crohn’s and its companion disease, ulcerative colitis. (The two are collectively known as inflammatory bowel disease; the difference is that colitis involves only the colon but Crohn’s can attack the entire digestive tract. UC is no less awful, though.)
Looking back, I think that one reason Crohn’s was new to me is that it’s an uncomfortable disease to talk about.
So nobody was talking.
After all, who in polite society wants to discuss bowel movements, diarrhea, colostomy bags and anal fistulas?
Well, we do.
I’ve always been pretty modest, but having your husband diagnosed with a disease that may kill him tends to make you a little – no, a lot – less afraid of being “indelicate.” If talking about it could save someone’s life, it’s well worth the embarrassment. Here’s Bruce’s colon: Dec. 16, 1998.
Besides, you can’t deal with the thing unless you’re willing to talk about it. And at some point, you have to see the humor in it.
You should hear the potty humor around our house. (Between Bruce and our 10-year-old dog who’s still not potty trained, we engage in lots of potty talk.)
We’ve discussed buying stock in Kimberly-Clark; we’re pretty sure we singlehandedly keep that company in business.
Bruce got out of the hospital on New Year’s Eve, and he was still pretty sick (so sick that I was a bit miffed at the doctor for discharging him, but I now realize it was just fear of the unknown). Once Bruce was home, I had to learn how to start and stop his TPN pump (via a surgically inserted tube) so he could “eat” a few times a day. He wouldn’t start eating “food” for another month, and then it was baby food. Anything rough wasn’t good for his gut or his butt. When the home-health nurse visited on Jan. 3, I mentioned that it was our first anniversary. We chatted about that for a minute, and then she left. A few minutes later, the doorbell rang. When I opened the door, the nurse said, “Happy anniversary!” and handed me a bag. Inside: a tube of butt cream. We got a good laugh out of that.
You either laugh or you cry.
In late 2009, I started asking the Crohn’s and Colitis Foundation of America how you go about getting a CCFA chapter in your state. All the events I knew of (fundraising walks, educational seminars, support group meetings) were taking place all around us, but not in Arkansas.
In 2010, Bruce and I joined the team that went on to organize CCFA’s first Take Steps Be Heard walk in Arkansas, and we’ve stationed our butts at the Mission tent each year since. The first walk was in Little Rock, and now we also have one in northwest Arkansas (we’ve driven the 280 miles to volunteer at a couple of those, too). Because of that first walk in 2010, we now have an Arkansas chapter of CCFA! (We sort of blew them away at national headquarters that first year – participation and money raised were way more than expected.)
The Take Steps walks are just one way we fundraise.
In 2012, we got involved in Team Challenge, CCFA’s fundraising and endurance training program, and I ran my first half-marathon in Nashville that September. That was tough – the fundraising part, I mean. Running 13.1 miles wasn’t exactly a piece of cake, but it was way easier than the fundraising.
So why did I sign up for a second, and then a third, half-marathon with Team Challenge? Not because I’m a running junkie but because I want to kick the crap out of Crohn’s and colitis. Even though the fundraising part makes me extremely uncomfortable, I was recognized as the fifth-top Team Challenge fundraiser at our Nashville race that year. I couldn’t have done it without a worthy cause to support.
I certainly didn’t drive 300-plus miles just to run 13. If it were just the running, I could sign up for any number of half-marathons in my home state; in fact, Bruce and I co-direct a half-marathon (for charity) right here in Batesville each December.
My poor body apparently wasn’t made for distance running. I had to withdraw from both the second and third Team Challenge half-marathons because of my own health problems. Heart surgery sort of took priority over running around Nashville for 2 1/2 hours, and later I had a few issues that caused me to withdraw from this year’s Disney Half-Marathon.
Bruce is equally uncomfortable asking for money (even for a good cause), and yet he and I have held a couple of local fundraising concerts for Team Challenge. He wrote a song called “Gut Works” (to the tune of Johnny Cash’s “Busted”) and performed it at the concerts each year. Talk about using humor to deal with your condition …
The Oakleys are rank amateurs when it comes to fundraising, but we are fortunate to be blessed with generous friends who make up for our shortcomings. They support us with their prayers, their presence and their money. We could not do it without them – without you. We also have formed some incredible friendships with the other Crohnies who are helping us kick the crap out of Crohn’s.
Today’s post is NOT about asking you for money. It’s really not. (Blame the “T” in the A-Z challenge; seriously, what else was I supposed to write about?)
However, I would be remiss if I didn’t include a link to our donation page. I keep one updated at Suzy & Spice throughout the year so that I can have a static URL on my business cards without worrying about the links that change with every CCFA event. (The link stays anchored at the top of the blog, and as of this writing it’s tiny and a bit difficult to see if you’re not looking for it. When the A-Z challenge is over, I’m going to work on a redesign.)
Our spring Take Steps Be Heard walk will be Saturday, May 30, in Little Rock, Ark. If you choose to donate, thank you. If you choose not to, we love you, anyway. You can always support us with your thoughts, prayers and cheers, and we really like those, too. 🙂
FOR MORE INFORMATION:
Friday: U is for Unbroken: book vs. movie.
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