I hated that thing! I always watched these Star Wars things and I always thought the tube was a light-saber and then I got scared! It’s a light saber, not a tube! But I looked forward to the candy.
Ellie, age 8
Why only me?
Everybody around me, the adults would always tell me to go catheterize, or oh, I’ve got to go take my medicine every morning, or something like that. I thought it was just weird, like why was it only me? When I got a little bit older, I just started getting mad. I didn’t want to do it.
When they’d tell me to go catheterize, I would just go in the bathroom, then wait like two minutes, and then leave and try to go play.
And I just didn’t like taking pills and the liquid, I just didn’t like the taste at first. I didn’t like feeling like I had to do all that stuff that everybody else didn’t have to do, give up my play time for all this other stuff… I just realized that catheterizing helps my health and keeps my bladder from being full. And now I can actually feel when it’s full, because before I didn’t really feel it. I think that’s another reason why I didn’t really care – I didn’t understand why I was doing it. But now I can actually feel it full when I need to go.
Now I just feel like it’s something I have to do, just like having to use the bathroom. It’s not a big deal.
Isaiah, age 17
I had to learn on my own
Mom: What helped, Isaiah? Checking on you? Keep coming in the bathroom? Because I started to do things like invade your privacy!
Isaiah: Nothing worked – I had to learn on my own. Invading my privacy just made it worse. I guess I just got mature, and I did notice I was getting worse because I wasn’t doing anything, I wasn’t taking care of myself. Every checkup they were telling me I was going to end up on dialysis. I was getting more tired and weak. I was getting a lot of pus in my urine.
Mom: He was having a lot of blockage, making it hard for the catheter to get through. And he wouldn’t be draining at all.
Isaiah: Actually, I think that’s what really made me want to make sure I do it, because that scared me. I would go in and I’d actually try to catheterize and it wouldn’t be working, it would just be sitting in there, nothing coming out. And that would scare me, cause like, what’s going on?
Isaiah, age 17, and mother
It still hurt
The doctors were saying this is what I had to do and I was saying, “Oh my God, it hurts.” Only in 7th grade, but that hurt!
At first, for the first month or two, my mother had to cath me because I didn’t know how. But she was teaching me as she was doing it – it took me a month to get the hang of it. She taught me, like, three days after getting out of the hospital, after she was just doing it there. So I eventually got the hang of it, but it still hurt. And because it was painful, I was often reluctant with cathing, and then I would get sick if I didn’t cath enough.
Matthew, age 19
Alex, age 17
Jellybeans
Dad: It was hard to get started, I remember we had to give you –
Ellie: Ooh! Jellybeans.
Dad: That’s right! We had four jellybeans to start with and then it was three and then after a while you didn’t need any.
Ellie: Now you need more to make me do it!
Dad: Is that so? Uh oh, I’m in trouble now!
Ellie, age 8, and father