StoryCorps at SHC: Mikaela and Michael Reilly

Mikaela Reilly: So, Dad, tell me about your experience as a patient with Crohn's disease.

Michael Reilly: First and foremost, let me just say, until I was diagnosed, I'd never heard of it. It is a chronic condition involving, in my case, the small bowel. Obviously, it makes digesting food and acquiring nutrients that are essential for life, make it very difficult. It was painful to eat anything. It just sapped me of energy, of strength.

And as the years went on, it took a- a sharp turn for the worse. I was quite ill. Ultimately, I ended up in the hospital and I was quite thin, people were quite concerned. A number of different medications were tried, varying degrees of success. The thing about the disease is it continues to evolve.

Mikaela: What really made you go through all of this? What was the- the driving force?

Michael: It was the pain. The pain was excruciating at times, and I couldn't sit up. No position was comfortable. I'd just have to walk around partially bent over, just holding my side. And it wasn't just in my stomach in the front, but it was also in my back. There was nothing that relieved it. It was awful.

Mikaela: In talking about pain and talking about how it affects you, do you feel like you've gotten back some of the things you felt like you lost when you were sick?

Michael: Yeah. Oh, definitely. Overall quality of life, but just... You know, going to bed and not having to dread the next day, I think, is the biggest thing.

Mikaela: I didn't know that you did that.

Michael: Very often.

Mikaela: I'm sorry, Dad.

Michael: You know, like, what's it gonna be like tomorrow? Geez. Yeah. And I'm sorry to say I didn't share that fear with your mother, but I just felt like it was something I didn't wanna burden her with. I've finally come to realize that my pain doesn't just affect me, it affects people around us.

Mikaela: I think that's the hardest thing about being somebody who's in pain is, you're not the only one who's sick. Like, everyone's kind of sick with you.

Michael: Yeah, whether they wanna be or not.

Mikaela: If you could go back to past Michael and speak to him, what would you say?

Michael: I'd say, "Pay attention. Let people know when you're sick, and then you won't have to suffer as long as you did, you idiot."

Mikaela: (laughs) You're not very nice to yourself, Dad.

Michael: Well, you know, I- I think I have a right to be because, you know, everybody has 20/20 hindsight, but you know, I look back and I shake my head and I say, "Why didn't I do something sooner?"

Mikaela: Because you didn't know. 'Cause I think that's the hardest lesson you have to learn as a patient, is that you're team captain and it's up to you.

Michael: Yeah. Absolutely.

Mikaela: How's your life changed?

Michael: Where I was - where I am now - the distance is light years. And for anyone who knows what a light year is, it's a long way. So, it's funny how it acts like a magnet. Suddenly you find you run into people that have the same condition or something similar, and it's just kind of funny how it comes up. It gets to be a real good ice breaker. How are things going? Oh, how- how's your condition? How's it feeling? And you talk to somebody else that has the condition, you know, you end up talking about, "Well, what medication are you taking? How effective is it?" "Well, I just started this." And it's just another facet of life that is just interesting.

Mikaela: I'm so glad that you feel so much better. I can't tell you how different you are. You are this bright, very energetic, very passionate person. I don't tell you that a lot, but I missed that person. I missed him so very much and I'm so glad that I get to see him again, and I love you.

Michael: I love you too.

Produced by Stanford Health Care with interviews recorded in collaboration with StoryCorps, a national nonprofit whose mission is to preserve and share humanity's stories in order to build connections between people and create a more just and compassionate world www.storycorps.org

Sound Editor: Carolina Correa

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