Participant Profile

Jay B.

At 25 years old, Jay B. has had a lot of experience managing his cystic fibrosis and he has done considerable thinking about what it means for him in the future:

“When I was 19, I freaked out because I had really low PFTs, pulmonary function tests, and I was f’ing scared out of my mind. And you know what, I was having anxiety, it was awful. I f’ing melted down and I didn’t understand what was going on with me. And I couldn’t decide what I wanted to do because the f’ing biggest question on my mind was, ‘Am I going to be alive?’ Honestly, when I was 19, I didn’t know if I was going to be alive at 24, 25. Look, I’m alive so that kind of gives me some reassurance that I’m going to be alive maybe 30ish and stuff like that. And I want to be a pharmacist, but I don’t know. Well, part of me is like, ‘Am I going to be alive when I graduate?’ I am thinking more than likely but it is really hard and it is really scary.”

An avid athlete, Jay lifts weights and runs. After a run during which he coughed up blood, Jay recorded his thoughts:

“I’ve been the best before, I will be the best again. And that’s it. That’s it, this is just part of it. That’s what makes sacrifices, sacrifices. And that’s why it’s such a goal to go through it. Because you go through things you don’t want to go through, and they are hard and a lot of people can’t. That’s what makes a champion and not a champion. Let’s go back to the bleeding. Someone who is afraid, someone who isn’t willing to just do it, would not have run. Would not have run. And last year, me last year, wouldn’t have. And you know last year, I remember I was running, doing really good, doing really well, after a clean out, and I was bleeding. I came back and didn’t finish, but I wanted to. This time as soon as I started coughing up blood, I’m like I am going to finish this race, no matter what. No matter what. Actually I shouldn’t say that. I would have stopped if I started coughing up a real lot of blood. Then I would have stopped because that would have been irresponsible. Probably could have died. But, I really feel like I set things straight with myself doing that. There was a point in time last year when I said to myself that I really want to make things go forward with my life right now. Because last year was the worst year of my life… Well, I did it… Now you know what it looks like to have cystic fibrosis and to do just what you want anyways. That’s what this looks like.”

Jay’s openness about his condition and belief in VIA is reflected when he says:

“How does that make you feel watching our lives? I think this is a very good study. It’s probably not going to cure cystic fibrosis but I don’t know. I think this is a really good study. I don’t know what people are taping. I don’t know if people are touching the topics I am touching but I feel it is necessary. Whether it be embarrassing, sad, depressing, but this is what this is. I have cystic fibrosis and this is my life. This is a part of my life and for you to truly get an idea of what it is like, you need to know this. You need to think about. Well, you don’t need to think about it, but you need to know. I need to tell you so you know.”


Jay discusses coughing
due to cystic fibrosis
>> Watch video


Jay gets a rebate from
his insurance company
>> Watch video


Jay coughs up blood
while waxing his car
>> Watch video

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Related Links
>> Dream Magazine
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Researchers
Michael Rich
Julia Szymczak
Julie Polvinen
Jen Patashnick
Richard Chalfen

 
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