We had the pleasure of speaking with Kori Tolbert after a company screening of the film Three Lives. What we learned about cystic fibrosis and Kori’s attitude towards her condition was truly inspiring.
Q: You share your personal story of living with cystic fibrosis so openly. What motivates you to do this?
A: It’s actually not easy to share so openly. There is a vulnerability that comes with sharing some of these details of my life. I feel that, and it’s a risk I willingly take because I know that sharing openly and honestly has the potential to let people in…in a more personal way. It helps spread awareness, not just about CF as a disease, but CF as a lived experience. Sharing my story is a way of giving the journey some meaning — taking all the “stuff” I have worked through and offering it out into the world. I’d love for my words and actions to make a difference, beyond my personal life. I’d love to leave some impact behind after I am gone. I think that motivates me to do what it takes to share my story in this way.
“I’d love for my words and actions to make a difference, beyond my personal life. I’d love to leave some impact behind after I am gone. I think that motivates me to do what it takes to share my story in this way.”
Q: What do you want physicians to know about genetic testing for cystic fibrosis?
A: I want them to know that it’s important to be truthful and open with their patients. Not every patient will want every piece of information, but let’s not deny it to those who do, based on preconceived notions of what people can handle. I want physicians to know that—as cliché as it sounds—knowledge is power. It’s important for physicians to really stay on top of as much of the leading research as they can in their field. Patients are depending on them to do so.
I also want physicians to know that kindness matters in healthcare, that the delivery of sometimes sensitive information can have an effect on how it is received by a patient.
And finally I want them to know that CARE is the most important part of healthcare. Kindness and consideration of what their patients may have to go through to really matters.
Q: How did the filming of “Three Lives” come to fruition?
A: I actually approached one of the producers at the UCO Media team a year or two ago about creating a film that didn’t just focus on the “hard” aspects of CF, but emphasized what those living with CF do to live an inspired life for another organization. We never made that specific film, but a year or two later, I was then approached about being one of the subjects of this film with for the Just Breathe Christmas Ball. (Just Breathe is an important local organization that helps people living with CF through grants towards medical expenses that are not covered by insurance.)
I think they did a beautiful job with the film. It was a great experience. The underlying goal was to show both the “pleasure” of living a life inspired, and the “pain” that comes with living with cystic fibrosis, and to do it from the perspective of three different lives. I think the film really evolved in its intention and message even while it was being filmed. Ultimately, the producers aspired to create a film not only about CF, but about the universal challenges that each of us face, and how our attitudes towards them can make all the difference.
“Ultimately, the producers aspired to create a film not only about CF, but about the universal challenges that each of us face, and how our attitudes towards them can make all the difference.”
Everyone on the UCO Media team was kind and interested and made me feel as comfortable as they could.
Q: You mentioned during your talk that you started a company that was inspired by your own relationship with medications. Can you tell us more about that?
A: Growing up in the medical system, I noticed that I had developed a sort of love/hate relationship with my medications, and I wanted to shift my thoughts in a positive way so that I could get the most out of my treatments and let go of what did not serve me. I began a labeling system as part of my own care, first writing “Love and Gratitude” on my IV med bags, and then applying this practice to all aspects of my care. It was a way of bringing my self back into the care plan, both by making choices about what I wanted to receive and how I would be in relationship to my treatments.
Booster Jots, my company, grew out of this simple but powerful approach to not only accepting one’s medical journey, but at the deepest level, being a part of it.
At a basic level, Booster Jots is a med labeling/empowerment program for children (people of any age really, but is geared towards children) who are going through treatments. Our company provides the tools for children to design their own labels, and infuse meaning into their daily routine. When parents or caregivers invite a child to think about what the child wants to incorporate into a particular treatment, it’s getting the child to engage with their treatment in a positive and helpful way. An example of this might be a child labeling their inhaler with “Super Powers”. Now, when they need a puff they can breathe in “Super Powers”. It’s adding an aspect of play and imagination into treatments which can sometimes even change the outcome of the treatment. Booster Jots can also be used as a tool to understand more about what’s going on emotionally for the child who is going through a treatment because we are literally asking the child to share what they want or need in their own terms that make sense to them.
“Our company provides the tools for children to design their own labels, and infuse meaning into their daily routine. When parents or caregivers invite a child to think about what the child wants to incorporate into a particular treatment, it’s getting the child to engage with their treatment in a positive and helpful way.”
Ultimately, I’d love to teach this concept to health care providers. Teaching this concept would be a powerful way to revolutionize our healthcare system — something all of you at Counsyl are very familiar with in your own way. I see teaching the Booster Jots concept to medical providers as calling on them to pay attention and see value in what patients want for themselves. I think getting health care providers on board will be even more powerful than patients and families using the concept on their own. As with any project of passion, there’s a longer story, and anyone interested in the extended version can find it at https://boosterjots.com/#kori’s-story.
Q: What are your thoughts about genetic testing for cystic fibrosis?
A: I believe in the importance of having information, and then making decisions that align with your personal values. My husband Rick and I had genetic testing done to find out if he was a carrier of CF. It was important to us to know our odds of having a child with CF before we began trying to have children. It turned out that Rick is not a carrier.
Since that time, I have experienced some shifts in my own health, and as a result, we are choosing not to be biological parents. That is a choice we made together as a couple, with information at our disposal.
Generally speaking, genetic testing might not be something that people have been comfortable talking to me about. (That has already started to change since giving this talk.) People may worry that I would take offense if they wanted to prevent having a baby with CF, as if that somehow would make my life with CF less valuable. I don’t believe that is the case. I can separate myself from the situation and see that parents wanting to prevent CF and wanting to know about their options is a very logical and smart thing for them to be considering, and I would tell them so. Once people know the information, I would also say that I trust them to take the action that feels right for them. I think I would have the same approach with anyone I was talking to, whether it was a friend, family member or stranger.
There are options now for couples to pursue having a biological child without CF. I cannot tell anyone what the right choice is for them, but I believe it is worth their consideration. Their life as a family, and their child’s life, could be very different depending on the steps they take or don’t take. If someone does turn out to be a carrier and chooses to get pregnant naturally knowing that information, I would tell them that it’s important —that it can be life-changing —to look into the resources now available for dealing with this condition, before they are faced with having a newborn that is diagnosed with CF.
As I have shared before, and would say again to others, living with CF is currently no easy job. It takes a lifetime of dedication. At the very least, it’s worth educating yourself about it.
Q: Anything else you would like to share?
I want to thank the Counsyl team for inviting me to share my story. It gives me hope to see a company like Counsyl making sincere efforts not to just “fight a disease” but to understand what it’s like for people who are living with the disease. That kind of interest and dedication is incredibly important in healthcare.