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 Allison Breininger, founder of The Negative Space. Read on for more about Allison, her husband, and The Negative Space.
Please introduce yourself! What’s your name, what are your pronouns, and where are you located?
I’m Allison Breininger and I use she/her pronouns. I live in St. Paul, MN with my husband, Sean, my teenage daughter, Maya, our German Shepherd, Winston, and our cats, Hattie and Hazel.
How did you meet your husband?
Sean and I were high school sweethearts! We met in choir. He sat behind me, kicked my chair, and would then pretend like he hadn’t done it. We just celebrated our 27 year dating anniversary!
Can you tell us a bit about his diagnosis?
In 2011, Sean was diagnosed with Fanconi anemia, a rare genetic disease that causes bone marrow failure and cancer at a rate of around 700x that of the general population. Since then, he’s had a bone marrow transplant, cancer of the tongue, throat, bladder, gums, and skin and was recently diagnosed with esophageal cancer.
What is The Negative Space?
The Negative Space is a nonprofit organization that Sean and I started in 2021 to change the way caregivers are seen and supported. I had seen firsthand that he, as the patient, was getting lots of support and I, as the caregiver was not. It reminded me of the artistic concept of negative space, in which there’s a focal point of the art that everyone notices and appreciates and then there’s everything in the background (the negative space) that plays a huge part in the picture, but isn’t really noticed or appreciated. At our organization, I provide one-on-one support to caregivers, virtual support groups, a podcast, social media content, and caregiver gifts as well as work to educate the community about the role and importance and impact of caregiving.
What is your favorite facet/initiative/component of The Negative Space?
My favorite part of The Negative Space is when caregivers listen to the podcast, engage in a session with me, hear me speak, or see our content on social media and feel as if they are part of the story, that they are seen, understood, supported, and no longer alone.
What is a common misconception about caregivers?
I think the issue is less about misconceptions, and more that they really aren’t thought about much at all. There is so much focus on the person with the diagnosis that there is often little to no thought about the caregiver, this person who is typically present for and impacted by each appointment and procedure, but for whom there are few if any resources or support.
What are three ways folks can support caregivers specifically?
See them. Recognize that there are so many people in your life who are in this role right now. Let them know that you recognize and honor what they are doing.
Help in a specific way. DON’T ASK how you can help. Instead, offer something like, “I’d like to bring you dinner next week. What night is best for you?” or “Our kids are on the same basketball team. I’d be happy to drive your son home from practice if you’d like.” or “We’d love to help with yardwork. Would it be okay if we came over this weekend to rake the leaves?”
Let them speak their truth without brightsiding. Too often when folks share with us how they are feeling, we become uncomfortable and respond with a statement that starts with, “Well, at least…,” which invalidates their feelings. Instead, just listen or respond with something like, “That sounds hard. Thank you for sharing that with me.”
If someone were to visit your area, what are your favorite spots you’d recommend?
Crosby Park is a beautiful spot close to where I live that is right along the Mississippi River. There are paths through the woods, along the marsh, and along the beach and it’s a favorite spot of the humans and the dog in my family!
I live just two hours from Lake Superior and I think there is just nothing like it. Its enormity and vastness gives me perspective and soothes my soul.
The Twin Cities has incredible opportunities to experience arts of all kinds and so I’d recommend the Guthrie Theater, which always has multiple shows playing, all of which are of incredible quality.
Shamelessly brag about one thing you’re really proud of.
I am really proud that I have created these spaces where caregivers say to me, “You have my words,” or “I thought I was alone until I found this.” That I’m able to help people in this powerful way feels incredible and makes me so grateful to be able to do this much-needed work.
What’s the best piece of advice anyone has ever given you?
As a caregiver at heart, I tend to worry about and take on the problems of everyone around me. A wise friend once gave me the mantra, “What is mine?” This has helped me countless times to determine where my time and energy are needed and where they aren’t.
Thank you so much for chatting with us, Allison! Tune in all this month to learn from Allison and the other rockstar caregivers in our community.