Living with a rare, terminal disease: Dustin Kaehr and HATTR
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Dustin Kaehr
Country star Tim McGraw wrote a song, “Live Like You Were Dying.” But beyond the words of a country song, what would it REALLY look like to live each day with a profound awareness of your coming end?
This is a question that Dustin Kaehr lives each day. Dustin is a leadership and business coach, professional speaker, published author, and an entrepreneur. And he is all of these things while living with a terminal disease, HATTR, that has no cure.
HATTR is genetic, passed through his family line. What is it like to live with this uncertainty? To love and to raise children under this spectre? How to let them know about his condition?
Dustin shares about his journey towards meaning, his book, and his purpose in today’s episode.
You can listen to the Handle with Care podcast on Apple Podcasts, Google Play, and Spotify. And you can listen to Dustin’s episode here:
The Kaehr Family
Here are three key takeaways from my conversation with Dustin
If you are struggling with a rare or incurable disease, finding community is important. Dustin talked about how meaningful it is to be with people who get it, who are likewise fighting the same disease. As Dustin said, “You are rare, but you are not alone.” Whether it is through Facebook groups or communities through your research hospital, finding your people matters.
Having staggered, honest conversations with your children matters. Dustin shared about how he and his wife have navigated these conversations with their boys. Whether you come to the same conclusions or different ones, keeping lines of communication open is so important, especially with children.
If you are a manager, give people the space that they need at work. Dustin talked about the importance of bosses that checked in with him, that allowed him flexibility when he needed to take time off or work from home. This sort of open-handed support builds trust and powerfully manifests a supportive culture at work.
