If your or your loved one’s experience living with this condition were a book, what would its title be and why? And what would you name the chapter you are currently in?
Maybe “Strength Through Struggles.” I know I’ve lived through a lot and my power to overcome my situation is something that I’ve been able to utilize my emotional strength for that. The current chapter, I would say, “Getting Back to a Normal Life.” With Trikafta, my lung function has increased. I’ve been able to do things that I haven’t been able to do for years. I started running. It’s just been nice to kind of settle in to a more normal life.
Oh my gosh, this is a hard one. I guess the title would probably have something to do with breathing, “Keep Breathing,” I guess. Because, that’s really the hardest part about everything is when you start to have a hard time breathing, you just can’t do anything. It’s just exhausting. So, I don’t even mind the coughing. It was just the inability to breathe. It kept me from doing everything I wanted to. And, then, so the chapter that I’m in is definitely “Despite COVID” is a really good one. Probably, I don’t know, maybe the end of the book, because the rest of my story is going to hopefully be, CF is going to be a smaller part of it. I’m not experiencing symptoms I used to after I started Trikafta and feeling almost cured. So, definitely a good chapter if not the end of my CF story.
If my experience was a book, its title would be “Triumphing over CF,” because I feel like I’ve just been successful so far in my life to not be so impacted by it and really have control over it. And title, or the chapter I’m currently in, would be “CF in College,” because I’m in college now. I’d just give some advice about my experience with CF, and trying to manage your condition and school, during college.
I think the title for our book would be, “I Am Not My Disease.” And I think the chapter that we would be in is somewhere along the lines of “We Are in This Together and We Will Fight.”
I already know the answer to this question as soon as I read it, because people have asked me and I’ve thought about it many, many times. The title of my book would be called “Breathe.” You’d probably get like 90% of people with CF telling you the exact same thing. I just think it’s such a common slogan phrase associated with people with CF, and it kind of is like a double meaning too, because even if you don’t have CS, if you get anxious or nervous or you go through a stressful situation, people always say that. “Just relax. Just breathe. Just take a breath.” It’s important in that respect, and it has extra meaning for people with CF, because we’ve always had trouble with our lungs and breathing. Just recently someone asked me this too, like a few months ago. I think they asked me if my life was a movie, but if it was a book, it would also be “Breathe.” What would the name of the chapter that I’m currently in? It would probably be … I was going to say Turmoil, but I’m not really myself involved in turmoil. I’m dealing with the turmoil that the country’s involved with. So, a better name for the chapter would be … I was going to say “The Pandemic.” Yeah. I think that that’s pretty suitable, “The Pandemic.” “Dealing With The Pandemic” doesn’t sound right. Just “The Pandemic,” like here’s a whole chapter about … Or “The Pandemic: Part One,” because I’m sure there’d be multiple parts, like when it first came out, living in the, “new normal”, and then if and when there’s a vaccine, and life after. I would say the current chapter would be … The name of the book would be “Breathe,” and the current chapter would be “The Pandemic: Part One.”
I would name the book, “Ups and Downs.” I’d name it that, because you have your ups and downs with CF. Downs, you’re in the hospital a lot and having to get treatments for pneumonia, or whatever conditions you have. That’s right. So, you have your ups, you have good days, you have bad days. The chapter I’m in would be, “Till The End,” I think. That’s the chapter. I’d call it, “Till the End,” because, right now, I’m at where I need to be mentally and with my medication. I think, from what I understand, the last medication that came out is the big one that they’ve been looking for. So, it’s kind of a status quo until the end, to the remaining end of my life. That’s what I’m thinking. So, that’s why I’d name it “Till The End,” because I don’t think there’s going to be anymore treatments being in the works. I’m sure there are, but the one I’m taking to help does treat the underlying cause of CF. So, I think that’s why I would call it that.
If I were to write a book about it, I would say the title would probably be cliche as it is “Cystic Fibrosis: Behind the Eyes of the Salt,” or something kind of silly like that. I wouldn’t want the title to be too serious. And then, if I were to say one for the chapter where I’m currently in, it would be “Rise Up.”
“Life Is Crazy and Full of Waves.” The chapter we’re in I guess is in the good part. I’m seeing my daughter change a lot due to some medications for the better.
Unfortunately, I don’t have an answer for this. I’m not that quick on my feet. If I was to give you an answer about a book and a chapter, it would be very mundane. I’m not that witty. I apologize.
If I were to write a book about my life I would call it, “Living,” because that’s what I do. I mean, I live life to the fullest. I rarely say no to things. I try to do as much as I can. I was given 16 years, I’ve made it to 30, and through the 30 years, I’ve done almost everything I’ve ever wanted to do. This chapter I’m in now, I mean, “Isolation.” Not being able to travel, not being able to do anything, it’s been a boring life for the past three months. I mean, I’ve done as much as I can. I’ve been on the lake, but it would be nice to get back out there and be able to travel again.
I think maybe I would title the book “Pressing On.” It would be referenced to just pushing forward all the time. So things change frequently with the disease my daughter has. We’re always having to make adjustments in her lifestyle decisions, her medicines, her diet, her treatments and we just continue you to do that. We just push forward, just always trying to do the best thing for her health with hope that her future will be good. It’s going to be positive, but it takes work, and we just have to keep learning, listening, and adapting as her health changes. I think the chapter we might be in right now would just be “Maintenance.” She hasn’t had any major breakthroughs or major complications. In the last couple of years, she has been through stuff ages where sinus surgeries were frequent, and that was a big issue. And then when her diabetes was diagnosed, that was a big issue in trying to learn how to live with diabetes. But we’ve come through a lot of that and now we’re sort of in a steady pattern of maintenance and it’s important to continue that pattern. You can’t take a break from it ever, but it’s just maintenance. It’s just every day doing the things that she needs to do to keep her body healthy.
Well, I’ve had to really think about this one because I’m not sure what exactly a book title would be. But I guess if we had to name the book title, it would be “Unexpected Blessings: So Far, So Good, Moving the Journey.” It’s hard to name a book. Now, the chapter that we’re in at this point would be “Moving Forward: Growing Up, Independent Living.” Because my son just turned 18, and so while this whole time he has grown up with someone really doing things for him, he is now having to learn the insurance side of this. Moving forward as an adult, how does this transition? So maybe even a great chapter for that would be, “The Transition Years,” because this is definitely a different journey that we’re taking. But as far as the book title for us personally, as a family, it would probably be “Unexpected Blessings.” Or, “Good Things Do Happen Even in Bad Situations.”
The title of the book would probably be “Sliding In,” and the reason I say that, because I’ve always told my doctors, I want to live my life to the fullest and slide in with the wheels spinning, to my grave. And they always laugh and say, “Yup, we can understand that.” Because I am a very active person. I just like to be doing things. And I just want to live as full of a life as I can. The chapter I’m currently in, it’s a little bit of “Back to the Future” with the COVID-19, the isolation and being so much more cautious. There’s a part of me that feels like I’ve gone back to my childhood in a way. I grew up on a farm, spent a lot of time at home. Got outside. It was a very simple life. There wasn’t a lot of places to go. I didn’t live close to anything that I could walk to. So I read a lot and I played outside a lot. I just had a lot of downtime and I feel like I’m in that right now. I’m not working as much. And I have had a wonderful time gardening and being outside and reading and just being a little slower paced. So I think we’re in the pause and basically I’m enjoying that.
I think the title of the book would be, “Stand on Top of the Mountain so That You Can See the World, Not so That the World Can See You.” And the current chapter of my book would be something along the lines of, thinking you’re summiting the mountain, getting to the top and realizing that there is a much, much taller, more difficult peak to summit in front of you and you’re not quite there yet.
The title would be “She’s Living,” because I think a lot of people expected me not to do much, because of this condition. And the current chapter would be “A New Beginning,” because of the new treatments I’m experiencing some amazing new improvements and it felt like a new beginning.