In honor of National Caregiver Month in November, we will be highlighting the amazing caregivers in our community and beyond. We are so excited to introduce Sara Godsby, a member of The Negative Space community. Read on for more about Sara and her story.
Please introduce yourself! What’s your name, what are your pronouns, and where are you located?
My name is Sara Quilici Giles (she/her/hers) and I live in the Bay Area.
Who is the person that you provide care for?
I was the caregiver for my twin sister, Ali when she was diagnosed with brain cancer in the Fall of 2015.
Can you tell us a bit about her diagnosis?
Ali was an overall healthy 24 year old who had just moved away from home to finish college. She started having really bad headaches and was in and out of the ER only to be diagnosed with multiple sinus infections. After the 3rd time, she had to advocate for herself and demand a CT scan. She was told CT scans aren’t given for headaches, but she insisted, When the doctor called her back into the office to read her results she knew it wasn’t good. A golf ball size brain tumor was found on her right frontal lobe and the only course of action was surgery. After a very successful craniotomy we found out that Ali’s tumor was a grade 3 anaplastic astrocytoma. A tumor more common in adults over the age 60. She was the first person on either side of our family to be diagnosed with cancer.
Caregivers are so often left out of conversations and considerations. Have you been able to find any community with other caregivers, and if so when and how?
I never really thought of myself as a caregiver until we went to CancerCon in 2016. CancerCon is a conference for young adults affected by cancer. I only went because Ali was on a chemo cycle and it was out of the question for her to go to Denver by herself. When we went to check in for the conference and get our name badges there were different colored lanyards for each type of person. Red for survivor, blue for caregiver, green for medical professional, etc. I actually stood there for a beat because I didn’t know what to pick. Ali eventually grabbed the blue lanyard and kind of thrust it at me. It was this weekend that I found other caregivers with very different stories but the themes mirrored my own.
How do you find or make space for yourself in the most challenging caregiving moments? What are some strategies that work for you?
It’s so important for caregivers to have a place to vent and get things out. Caregiving is so difficult no matter what stage of survivorship our person is in. For me, the most helpful thing while being a caregiver was learning about the ring theory. It’s a practice of pouring love in and dumping all the hard things out. Essentially, my sister Ali was the very center of the smallest social ring. The next (medium size ring) would be me, our Dad, siblings, and Ali’s boyfriend. As the rings keep getting bigger you add more people. For example the next ring might be close friends, cousins, aunts and uncles, and after that everyone else. The theory suggests that those in the rings pour love into smaller rings and ‘dump’ or ‘complain’ to the outer rings. So Ali can dump and complain to absolutely everyone, but one of Ali’s friends can’t complain to me because I am in an inner ring. We all need somewhere to dump and to vent, but it’s finding the right people to do this with that makes the biggest difference.
What advice would you give to folks that are new to their role as caregivers?
Be open and honest with your person about what they need from you. Ali was dead set on still doing things that were in her control while I was trying to do absolutely everything under the sun for her. We were butting heads because I was taking her control but didn’t know it. I was just trying to take care of her. Once we got on the same page it made it so much easier.
Can you tell us about a time as a caregiver that you felt seen, understood, and/or really supported?
A caregivers-only session at CancerCon 2016. It was basically an open discussion about problems caregivers deal with. I didn’t realize how much emotions I was holding in while trying to be strong for Ali. To meet people that understood exactly what I was feeling and going through made all the difference in the world.
If someone were to visit your area, what are your favorite spots you’d recommend?
I’m about 50 miles south of San Francisco but there are so many tourist attractions you’d be hard pressed not to find something to do!
Shamelessly brag about one thing you’re really proud of.
I was in my last year of college while I was Ali’s caregiver. There were so many times I wanted to quit school because I felt like it took time away from me taking care of Ali. But I stuck with it and graduated with no student debt. It is something I am most proud of.
What’s the best piece of advice anyone has ever given you?
All things in life are temporary. The good and the bad don’t last forever. So if something you’re going through is hard, have faith the tides will eventually turn. The same can be said for all the good things. Don’t take good things or people in your life for granted.
Thank you so much for chatting with us, Sara! Tune in all this month to learn from Sara and the other rockstar caregivers in our community.