Nilwona: A True Story

I am in a season of transition, and it has resulted in quite a bit of personal reflection and inventory. At various times in the past few months, I have been given opportunities to share bits and pieces of my story with others. It never fails, people are amazed at the things I share.

There are many pieces of my life that I have been quite transparent in communicating. However, there are other parts that I’ve shared in a more opaque way. (Thanks, Rev. Carey, for that nugget of wisdom!) Over the past couple of weeks (and more specifically, the past few days), I have been thinking more intently about why people are inspired and fascinated by my story. Based on the feedback I’ve received, people seem to simply be drawn to the fact that I am “authentic” and “present” with them. Yet, lately, I’ve felt that something was missing.

This morning, as one of our outgoing staff pastors began his sermon introduction, I had a revelation. Right now, I can’t even remember what it was he said that lit this spark – I don’t even think he’d introduced the scripture or started preaching. But whatever he said was the missing piece of the puzzle that had formed in my mind. I realized what was missing from my story.

People know me as a dreamer, someone who is passionate about encouraging others to overcome obstacles and strive to do great things in the world. I have often shared the fact that I grew up on food stamps and hand-me-downs yet was raised to trust God and to value the importance of education. I’ve spoken often about how I overcame financial and spiritual obstacles. But I haven’t always included a very important piece of my story, the thorn in my side.

I have Crohn’s Disease. Crohn’s is an inflammatory bowel disease (IBD) that also falls into the category of autoimmune diseases. With autoimmune diseases, the body’s immune system wrongly identifies a part of the body as a foreign invader and attacks it. (Some other autoimmune diseases are multiple sclerosis, rheumatoid arthritis, lupus and asthma.) Crohn’s also causes some other complications within the body. I have had symptoms of Crohn’s for most of my life but wasn’t officially diagnosed until I was 18 – and in surgery. The story of my diagnosis alone is quite miraculous; the disease had progressed to a point where I should have died. Yet, I’m still here.

Only my family and closest friends know the true extent of what my life with Crohn’s is like. Everyone else kinda of finds out on a “need-to-know” basis. This is partly because, as a society, we’re fairly uncomfortable talking about intestines, bowels, poop, etc. (Poop talk is only acceptable when you’re the parent of a child at potty training age or younger.) There is no pretty pink ribbon or yellow bracelet to support people living with IBD (which includes Colitis) – but you will sometimes see me wearing a blue bracelet that says “Got Guts?” Not many celebrities go on television to share their story of how they’ve battled with debilitating stomach pain and cramps. And, even when Dr. Oz televised his colonoscopy, he left out the gory details.

Living with Crohn’s is a major part of my story. And it’s what, to me, makes my story what it is. When you understand that traveling to Zambia was a potentially life-threatening experience for me, it makes it all the more amazing that I was able to do it twice. (I had some medical challenges, but  I endured them.)

Many have often heard me talk about the importance of sharing your story because you never know who can learn from your experience. I am inspired by people like Princess Kasune Zulu and countless others who have chosen to be vocal about their life living with HIV/AIDS because they want to be a voice for those who don’t have a voice. Well, I would not be living my life to the fullest and serving the world if I did not do the same for people living with Crohn’s/IBD.

So. There it is. This won’t be the last post about Crohn’s or living with Crohn’s. In the meantime, if you would like to know more about it, please feel free to visit the Crohn’s & Colitis Foundation of America website at

Whaddya think about that?