Letter from Julia Barrera, Team Member at Get It Done SB: Living Loud with Advance Care Planning
I grew up in a proud Sicilian-American family, the Lumias, which meant every kitchen was alive with raucous conversation, every dinner filled with petty bickering and sincere compliments, and every hug a long tight embrace that let you know “I will love you no matter what.” Every emotion, positive or negative, was expressed loudly and intensely, without shame or censorship. This included feelings about disease, aging, and death.
As shocking as it may seem, it was entirely common for someone to say in the middle of a conversation, “when I can no longer do [insert daily task here], just let me die.” My family embraced the inevitable without fear, and instead made their wishes clear should something ever happen to them.
None of them did it so clearly as my aunt Linda, “Linny,” who was diagnosed with a rare genetic disorder that, with no cure, would eventually end her life. An English professor with a fierce love of knowledge and an even fiercer desire to be able to advocate for herself read numerous medical articles about her illness, learned about her medications, and ultimately planned for death by making her wishes known. She didn’t want to suffer and wished to die naturally at home with loved ones.
In true Lumia fashion, she made her thoughts about her illness and death known to my grandmother, my mother, and me on numerous occasions. And as she exceeded doctors’ expectations by living for ten more years after her diagnosis, we carried those wishes and values with us, with pain and sorrow but also clarity and peace of mind that we knew exactly what she wanted and could enjoy her time with her in the present.
When Aunt Linny passed away in February of 2017, in her home, receiving comfort care with her family around her as was her wish, what I remembered about her was not her illness but the carefully wrapped books she would give me every year for my birthday, her addiction to Kozy Shack tapioca pudding, and most importantly, the warmth that she brought to my life.
One thing I can say about my family is, like the way they talk, the way they live is loud. By planning for death, they embrace the joy of the current moment and it makes their lives rich. Their attitude toward end of life planning has certainly influenced my relationship with healthcare and death, and motivated me to fill out an Advance Directive, a legal document dictating my healthcare decisions, at the age of twenty-three.
What I want you to know is that Advance Care Planning is a gift not only for yourself but for your loved ones. Planning for your future healthcare can be an emotionally difficult experience; not everyone is so open about death and dying. However, when you do make your wishes known to family and friends, it enables you to plan for the future and enjoy time with loved ones to the fullest extent. Even if you are not ready to complete an Advance Directive, I want to encourage you to start having conversations about Advance Care Planning with your loved ones, so if the time comes where you are unable to advocate for yourself, you’ll have given them the gift of love and peace of mind.
Learn more about starting the conversation today at https://www.getitdonesb.org/having-the-conversation.