One positive thing about having a Cuban mother is eating Cuban food. My mom is an excellent cook and, during my childhood, eating traditional Cuban meals — ropa vieja, tostones, picadillo, and rice and beans — was a major highlight.
One negative as a child was dealing with her high-strung nature. She was a walking, talking kaleidoscope of emotions, and yelling was her primary means of communication.
As I grew older, I realized she taught me something valuable: Sharing emotions is healthy, and it can be a sign of emotional intelligence when the emotions are well-managed.
My mom’s anger cultivated another positive trait in me: my imagination. I retreated into safe spaces when I read, so books acted as a means of distracting and transporting me from the sadness I often felt as a child.
Needless to say, because two people I love dearly — my wife, Jill, and our daughter — have Huntington’s disease, a rare, terminal illness, it’s easy to despair. I want them to be happy, not suffering. I want them to live long lives, not short ones. I want them to continue to be the brilliant, vibrant women they are. But Huntington’s will smash all those desires I have for them.
To deal with their disease in a healthy way, I turned to my safe place: my imagination. I came up with the following: I plan to create a community around creative caregivers and those who are being cared for. I aim to start a podcast called “Sharing About Caring” that shares audio content about people’s journeys.
I want people to share from their hearts what it’s like to take care of someone and be taken care of. There are plenty of podcasts about caregiving that offer great practical information or include interviews with people who talk about what’s involved in the journey. Those podcasts seem aimed at the head. I want to move people in their hearts.
As far as I can tell, few share original poems, songs, fictional short stories, short radio dramas, reflections, spoken-word performances, or music that transport people to the roller coaster world of grief, anger, love, patience, sadness, courage, and vulnerability that constitutes what caregivers and those they take care of go through when dealing with rare or serious illnesses.
Through the podcast, I want to create a safe and healthy outlet for emotions. I want to inspire listeners who may be caregivers to know they are not alone. I want to tap into people’s imaginations to transport listeners to worlds they may not be familiar with, and in doing so, educate people about realities they may not be able to imagine.
In sharing all of this, I am emphasizing one way I am grappling with my emotions. I hope my idea will inspire others to consider healthy outlets they can use to express their emotions when caring for someone. Perhaps it’s keeping a journal. Maybe it’s being part of a support group. Maybe it’s frequent exercising. Or maybe it’s filming a documentary.
Whatever it is, know that emotions are like gardens. They need to be tended to and cultivated. Find an outlet that is true to your personality and make sure it’s a healthy one; emotional balance usually follows.
For more information on my podcast idea, or to submit some creative content for consideration, visit sharingaboutcaringpodcast.wordpress.com.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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