StoryCorps at SHC: Mikaela and Michael Reilly
I've finally come to realize that my pain doesn't just affect me. It affects people around us.
Mikaela Reilly: 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 makes digesting food and acquiring nutrients that are essential for life makes it very difficult. It was painful to eat anything. Just sapped me of energy of strength, and as the years went on, it took 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 this, what was 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 and 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, 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: And I'm like, what's it gonna be like tomorrow.
Michael: 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 want to 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, it's not the only one who's sick, everyone's kind of sick with you,
Michael: Yeah, whether they want to 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: You're not very nice to yourself, Dad.
Michael: You know, I think I have right to be because, you know, everybody has 2020 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, because 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 is 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. 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 icebreaker, how are things. How is your condition how's it feeling. You talk to somebody else that has the condition, you know, you end up talking about well what medication are you taking, or how effective is it. Well, I just started this and it's just another facet of life that is 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, 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.
Sound Editor: Carolina Correa