"I've seen the other side"

Ron Perry
Chapter 1
Alone With This Thing

I was born and raised in Hawaii, and I was 17 years old when I was diagnosed with Crohn's. That was more than 40 years ago. Back then, of course, I didn't know anything at all about this condition. I did not know of anyone who had Crohn's, and there was no place to go to talk to anyone about it. When the doctor told me that I had this disease, I think I probably said something like, "Okay, whatever. What is it?" I really had no clue. I was an athlete when I was a kid. My whole life was sports, and all the other things that 17-year-old kids do, and when you hear a doctor telling you, "Well, you can't do this anymore, and now you're going to have to cut back on that" -- it was just devastating. It really was. My whole world, what I had known it to be, changed overnight and the worst part was that there was no support system. You're all alone with this thing. What we know now about this disease, the progress that's been made in the past four or five decades, it's almost unbelievable. If somehow I could have known back then how much better it was going to get, over time, for people with Crohn's I think I could have honestly said, "Okay, no big deal, we'll work through this." But that initial diagnosis, and my immediate reaction -- basically saying to myself, okay, I am not like a normal teenager anymore. That really stuck with me for a long time.

Chapter 2
The Weakest Link

You know, after the diagnosis -- and definitely after I had lived with the symptoms for a while -- I came to a realization that was probably the result of being an athlete for so long. Never mind how strong your arms are, or how strong your mind is, or how fast your feet are -- in the end, you're only as strong as your weakest link. That idea made total sense to me at that point. It doesn't matter how much talent or strength I have: this one particular part, this link that is not strong, is holding back the whole package. When I realized that, it was definitely a "Wow" moment for me.

When you're a teen, you think you're invincible. Then, all of a sudden, during track season all my times were getting slower, and I just kept thinking, "What is going on?" I was losing weight. I couldn't figure it out. No one could figure it out. Everybody had an opinion -- It was this, it was that, and for quite a while no two ideas about what was wrong with me were the same. Of course, that only added to the confusion, and the fear.

Chapter 3
The Tunnel and the Light

If someone came to me today, having just been diagnosed with this disease, and they wanted advice on how to deal with it, I would not downplay the seriousness of Crohn's. I would be straightforward with them. I would never trivialize this and say, "Yeah, it's no big deal," just to try and make them feel better. Because is a big deal. I know what that person is experiencing -- that initial shock. So I would also tell them, "I know what you're going through. I remember when I was diagnosed, and I know where you're at. You're in this empty room right now." Then I tell them that I've gone to the other side, I've seen the other side, and I've come back to tell them that, yes, you're in this room right now, and we can stay in this room together, or we can walk out of the room together.

Of course, how I relate my stories depends on the age of the person I'm speaking to. If it's a teenager, I talk about the problems I had when I was a teen and newly diagnosed. Going on dates and making sure you knew right away where the bathrooms were in the restaurant or the movie theater. And then maybe being in a relationship in college, and thinking, "I have this issue I've got to deal with and I can't carry this relationship any further." All of these anxieties play with you. Then you get older, you have a family, and you wonder how to deal with that, be a dad, go to work, and still be around for my kids. But the reality is, you persevere. I'm in a situation where I've run the gamut, from someone who has had this disease as a teenager, through the years of raising a family, and now going into the so-called golden years. But I lived my life the way I wanted to live it, with a few adjustments due to Crohn's. As I told my daughter, who is a young mother with another on the way, and was recently diagnosed with ulcerative colitis, "You can shrivel up and die, or you can get through it." I think the common theme that runs through my experience is this: there is a light at the end of the tunnel. It's always there. You've got to believe that, and you'll always find it.