I watched a TED Talk called “Facing Death Full of Life” by Danielle Valenti. It was about her journey with Huntington’s disease first as a caretaker, then with it as her future. I chose to watch this TED Talk because the title of it got my attention to live life to the fullest, even in horrible circumstances. It solidified my understanding of Huntington’s disease (HD) that I learned in class about the the genetic link and symptoms experienced. Additionally, it equipped me with a deeper understanding of what a person with a recent diagnosis is going through.
Danielle’s mother kept her diagnosis of Huntington’s disease a secret to “protect” her until the symptoms were too obvious to hide any longer. Her mother refused food for 67 days which ended in her death at the age of 55. Danielle no longer had the role of being her mother’s caretaker to distract her from the fact that she could have Huntington’s disease, too. She said she was unable to mourn her mother’s death until she received genetic testing to determine if she had HD and would develop the same symptoms. After receiving a positive HD diagnosis, Danielle was afraid to live and felt sorry for herself.
After experiencing depression for several months, Danielle decided to change her mindset in order to be happy again. One strategy she uses is to break her life into small chunks and to take each day at a time. Her future is scary, and thinking about it brings on fear and anxiety. Also, she spoke on the importance of time to struggle. When you allow this to happen and you are able to push through, you can evaluate and grow from what you went through.
Danielle had the audience think of something they really enjoy and then to imagine struggling to hold onto it, all while losing your mind and body. I thought this linked to occupational therapy because we center the therapeutic intervention around what is most important to our clients. I think anyone can learn from Danielle’s story whether they have Huntington’s disease or another chronic disease, or not.
Talks, T. (2015, December 04). Facing Death Full of Life | Danielle Valenti | TEDxBerkshires. Retrieved August 11, 2019, from https://www.youtube.com/watch?v=6JRwCdmewl0
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