Ruth Schorr: How My Dad's CLL Impacted My Outlook on Life

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Topics include: Care Partners

When Ruth Schorr, daughter of Patient Power founder Andrew Schorr, was around 5 years old, she became aware that there was a another presence in her family: chronic lymphocytic leukemia (CLL). Ruth shares the impact the disease had on her childhood, her relationship with her father, and how it affected her overall outlook on life. She explains how she learned how to not "sweat the small stuff" and offers her advice for children and young adults to help prevent the disease from becoming a "monster" in their lives.

This program was sponsored by The Patient Empowerment Network, which received educational grants from AbbVie, Inc., Genentech and Gilead Sciences, Inc    

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Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Ruth Schorr:

I remember when I was maybe, about 5 years old. I think I was, maybe some of my first memories of really feeling like CLL was, like, present in our lifestyle. Before that, there had been doctor’s appointments here and there and things like that. But we were kind of just playing the waiting game, and so I didn’t really understand as much what was going on then.

But then I remember, my parents started traveling to Texas a lot more when my dad was going, started going through treatment, and I remember, we had nannies when I was younger who lived with us, and they were doing a lot more stuff for us and things like that.

And I also just remember that when my dad was around, he just was a lot more tired all the time, starting around then, and so I feel like that’s really when I first started to realize kind of what was going on.

I think when I first started to realize what was going on, when it felt like my dad was getting a lot sicker, was he would be gone for extended periods of time, and sometimes my mom would be with him. And when he came back, he would just seem, like, obviously, very worn out and tired.

And so, I think after a while of kind of getting in a cycle of this happening a few times, I kind of almost started to push back, because it felt like when he was around I would get comfortable with it. But then he would leave again, and so I think I was kind of anxious because I was just really young.

And I didn’t understand that if there was a promise, that if he went away, if he was going to come back. And so, I think I just kind of started to prepare that if he wasn’t going to be around, that I shouldn’t get used to him being around.

And so, I think, the emotional part of that was, there was a lot of, you know, being anxious. And I think, on top of being anxious, it was just a nervousness thing, like, really nervous that I didn’t have any idea what the outcome was going to be, so.

When he first started to feel better, I think I was very hesitant to go back to kind of feeling comfortable, treating him completely normally, like, it was definitely a process. I feel like I remember, like, just for, like, maybe between, like, 6 and 10, that I was still just kind of, like, anxious.

And then, I think after that, I really started to just cherish that relationship a lot more. And especially when he did start to feel so much better, it was kind of, like, wow, I really have to take full advantage of this, because we don’t know what’s going to happen in the future.

And, I want to hang out with him as much as I can and act as normal as we possibly can as a family…and interacting with him as possible, because you don’t know what’s going to happen.

I think the biggest thing was, ever since I was younger, my dad has said, you know, don’t sweat the small stuff. That’s, like, the Q Schorr line in our house, like, every time he’s talking about anything with his kind of philosophy.

And I think that as I’ve gotten older, really, probably after I left for college, I feel like I’ve been able to really take that on face value and try and incorporate it into my life, whether it’s getting involved with things or volunteering or spending time with my family, especially now that I’m away from them so often, it’s really precious when we’re together.

So I think that that aspect has definitely carried into my own life. Really, you know, just taking every day as it comes and trying to have a positive outlook on it, because there’s really no point in wasting time worrying about it, I guess.

I think my advice to other kids who are dealing with illness in their family in any way is really, don’t allow for illness to be a monster in any more aspects of your life than it needs to be, really.

You know, when you put up blockades for people you love because you’re scared you’re going to lose them, or other things, it really just kind of feeds that monster, you know. And so, I think, just remembering to take a step back and look at life in the most positive light that you can to and the positive outlook on illness and hard times.

And really cherish the time you have with the family and loved ones and let it push you forward, you know, with a positive outlook on the future, really. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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Page last updated on June 27, 2019