The Wisdom of Not Knowing
I chose this TED Talk because I wanted to hear more testimonies about Huntington's disease and was struck by how young this particular speaker was.
In this video, Kristen Powers tells her story of learning to cope with her mother's diagnosis of Huntington's as well as the 50% chance she or her siblings would contract it. Since she was only 9 years old at the time of her mother's diagnosis, she had 9 years to wait until she could legally take the test that would reveal if she was gene-positive or negative for HD. During this period of "Not Knowing," she decided to process her emotions through journaling and decided she was just going to try to live life to the fullest rather than allowing anxiety to steal her joy. She ends the talk by saying she recently turned 18 and would finally find out if she was gene-positive or negative in a few months but plans to keep advocating for Huntington's regardless of the results. Since this video was published in 2012, I found a more recent article about her titled "The uncertainty was killing me," because (even as a random observer) it was also killing me. She tested negative! In the article, she talks about how understandably freeing that news was to hear because she had been preparing for two different outcomes her entire life.
Kristen's story serves as a reminder of how important it is for us as OT practitioners to consider the impact a diagnosis may have on not only the client, but their family/support group too. Especially with children as young as she was, they may need help working through such intense emotions. Additionally, as tomorrow is never guaranteed, I think we should all aspire to have a mindset like Kristen's to live the life we are given to the fullest. She is only a couple of years older than me so I related a lot to her explanation of learning to navigate adult life while also appealing to the inner child that's in all of us by mixing in fun as much as possible.
Citation:
Powers, K. (2012, April). The InnerKid Philosophy: Kristen Powers [Video file]. Retrieved from
https://www.youtube.com/watch?v=l6JiBiMqiI4
Steakley, L., Coppa, S., & Goldman, B. (2017, December 19). "The uncertainty was killing me": A student's tale of genetic testing for Huntington's disease. Retrieved from
https://scopeblog.stanford.edu/2015/02/03/the-uncertainty-was-killing-me-a-students-tale-of-genetic-testing-for-huntingtons-disease/
In this video, Kristen Powers tells her story of learning to cope with her mother's diagnosis of Huntington's as well as the 50% chance she or her siblings would contract it. Since she was only 9 years old at the time of her mother's diagnosis, she had 9 years to wait until she could legally take the test that would reveal if she was gene-positive or negative for HD. During this period of "Not Knowing," she decided to process her emotions through journaling and decided she was just going to try to live life to the fullest rather than allowing anxiety to steal her joy. She ends the talk by saying she recently turned 18 and would finally find out if she was gene-positive or negative in a few months but plans to keep advocating for Huntington's regardless of the results. Since this video was published in 2012, I found a more recent article about her titled "The uncertainty was killing me," because (even as a random observer) it was also killing me. She tested negative! In the article, she talks about how understandably freeing that news was to hear because she had been preparing for two different outcomes her entire life.
Kristen's story serves as a reminder of how important it is for us as OT practitioners to consider the impact a diagnosis may have on not only the client, but their family/support group too. Especially with children as young as she was, they may need help working through such intense emotions. Additionally, as tomorrow is never guaranteed, I think we should all aspire to have a mindset like Kristen's to live the life we are given to the fullest. She is only a couple of years older than me so I related a lot to her explanation of learning to navigate adult life while also appealing to the inner child that's in all of us by mixing in fun as much as possible.
Citation:
Powers, K. (2012, April). The InnerKid Philosophy: Kristen Powers [Video file]. Retrieved from
https://www.youtube.com/watch?v=l6JiBiMqiI4
Steakley, L., Coppa, S., & Goldman, B. (2017, December 19). "The uncertainty was killing me": A student's tale of genetic testing for Huntington's disease. Retrieved from
https://scopeblog.stanford.edu/2015/02/03/the-uncertainty-was-killing-me-a-students-tale-of-genetic-testing-for-huntingtons-disease/
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