Allison Breininger and her husband, Sean
“8 Questions with …” is a new Gold Foundation series spotlighting members of the Gold community – doctors, nurses, healthcare professionals of all kinds, students, corporate and hospital leaders, patients, family members, Trustees, staff members, and supporters.
We are delighted to introduce you to Allison Breininger, a caregiver advocate with over 20 years experience in teaching, training, directing, coaching, and creating content in the realm of education.
Allison Breininger has been a caregiver for her husband since he was diagnosed with Fanconi Anemia more than a decade ago. She has been by his side through a bone marrow transplant and multiple cancers and has experienced firsthand that caregivers are in the negative space: vital yet overlooked and unsupported. Fueled by what she has seen, Allison founded the nonprofit The Negative Space as a way to use her experience and skills to change the way caregivers are seen and supported.
Through The Negative Space, Allison shines light on the realities of caregiving, provides direct services to caregivers and educates and equips those who support them with concrete tools and strategies. She co-hosts the In Sickness podcast, provides individual coaching to caregivers nationwide, facilitates support groups and education sessions, partners with multiple organizations to more intentionally support caregivers, and sells caregiver gift boxes.
Follow The Negative Space on Instagram @negspacelife and the In Sickness podcast at @insicknesspodcast.
How would you explain humanism in healthcare to a kid?
Lots of doctors pick a certain part of the body that they are really interested in and become specialists in that, like an eye doctor or a heart doctor or a dentist. But no matter what body part they focus on, it’s always important that they don’t just pay attention to that one part, but that they see the person as a whole human being – a person with not only lots of body parts, but also with feelings and thoughts and opinions – and that they see, pay attention to, and care for every part of each human, every time they see them.
Tell us a story about a time you felt the human connection in healthcare.
Allison and Sean Breininger at one of his medical appointments.
My husband is seen frequently by the Oral Surgery team, as they watch for and remove his recurring oral cancers. At one of these appointments, the fellow told us she chose her cat-covered surgery cap with us in mind because she remembered that we had a tabby cat at home. She then asked about and expressed concern over other procedures my husband had experienced since our last visit, showing that she had clearly read the chart and cared about other parts of his health. The surgeon entered, asked about our daughter by name and looked straight at me to say that she had recently been in a caregiving role and it made her think of and appreciate all that I do even more than she had before. These may all seem small, but each one showed us that these women cared about us as humans, not just as another mouth to inspect.
What’s one small way you bring humanism into your daily life?
In my work supporting caregivers at The Negative Space, I create frequent posts for social media in which I paint the picture of what it is like to be a caregiver. By doing this, I show the world that there is so much more to being a caregiver than refilling meds and scheduling appointments. I convey that we have feelings and opinions and thoughts about all that is happening both to our loved ones and to us and that we, too, deserve to be seen, honored, and supported.
A recent Instagram post from The Negative Space shared this list of what can come up for caregivers during this season. As one person comments: “Yet again you make me feel seen!”
What do you think is the most urgent threat to humanism in health care?
I have experienced first-hand that medical staff are rushed, overwhelmed, and governed by insurance companies and bureaucratic policies. All of these outside forces are putting them in situations where they have less time, capacity, and autonomy to see and care for their patients as whole beings. This leaves patients feeling unheard, can cause important details to fall through the cracks, and puts more pressure on family caregivers to pick up the pieces, all of which impacts the emotional, mental, and physical well-being of patients and caregivers alike.
What’s one of your favorite feel-good songs?
I love “You Will Be Found” from the musical Dear Evan Hanson. To me, it is both an awesome sing along ballad, and a perfect theme song for the work I’m doing with caregivers. I often listen to it on days when I’m preparing to lead caregiver support groups and webinars.
What’s one of your daily ways to care for your well-being?
I end each evening with a short bedtime yoga practice and afterwards, as I lie on my mat, I think through the day and all that happened. As I do, I think about the emotions I felt as I experienced each thing. This has been a really valuable way for me to look for patterns, to process things that I may not have noticed in the moment, and to recognize the range of emotions I experience each day.
What’s one random medical fact you love?
My husband had a bone marrow transplant and his brother was his donor. I think it is so fascinating that my husband now has his brother’s blood type!
What is your happy place?
My happy place is Lake Superior on the north shore of Minnesota. I live in the Twin Cities, about two hours from the lake and try to get there whenever I can. It is so vast that being near its enormity really puts things in perspective. It also changes throughout the day and the seasons and can go from serene and sparkling to full of crashing waves. Sitting at its shore and taking it all in is like a balm for my whole being.
Learn more at The Negative Space website, and read her powerful poem, “What makes him rare.”
