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Meet Allison

MEET ALLISON BREININGER,
CREATOR OF THE NEGATIVE SPACE

Allison has a MA in Education and spent twenty years teaching, training, directing, coaching, and creating content in the realm of education. A caregiver for her husband since 2010, she experienced firsthand that caregivers are in the negative space: vital yet overlooked and unsupported. Fueled by what she saw, Allison created 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, she 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 and her husband, Sean, live in St. Paul, Minnesota with their teenage daughter, Maya Bedeline, their two cats, Hattie and Hazel, and their pandemic puppy, Winston.

A Note From Allison:

When I was in college I remember thinking that nothing bad, tragic, or interesting had ever really happened to me. I was a pastor’s kid who had grown up in an uncommonly stable and happy family. I was engaged to my high school sweetheart and preparing to graduate with a teaching degree sure to get me a stable job.

In the melodrama of that age I remember thinking with a pout:

“Everyone else’s life is so much more interesting than mine.”

How hard it was to have a life that wasn’t hard! #boohoo 21-year-old Allison. Enjoy your last moments of living in a space paid for by someone else and eating in a cafeteria full of pre-chopped vegetables and all the cereals. (To be clear, if 21-year-old Allison was reading this, she would wonder why the pound sign was hanging out mid-paragraph. I’m much older than I look.)

Five years later a diagnosis of endometriosis had sent us into failed infertility treatment attempts, which led us to pursue adoption. Matched with a giant-cheeked baby girl in Haiti, we were assured she would be home with us in three months. Months turned to years marked by paperwork, corruption, and an empty nursery. After two years and four months, we brought our vibrant, Creole-speaking toddler into our Saint Paul, Minnesota home. 

In the haze of exhausted relief, I remember thinking with a sigh:

“I’ve done the one hard thing for my life! That was it!  No more hard things for me!”

Because that’s totally how life works, right? One hard thing per person! Today Me is shaking her wise head at That Me, patting her patronizingly on the knee…while wondering what kind of things I think right now that Future Me will shake her head at.

One year after Maya Bedeline arrived, the combination of a handful of skin cancers, a bout of Hand, Foot, and Mouth disease, and low white blood counts led Sean to the Mayo Clinic looking for answers. One year and major missed diagnosis (not a typo, they actually missed it) later he was diagnosed with Fanconi anemia, a rare genetic disorder that causes bone marrow failure and cancer. December of that same year he had a bone marrow transplant, spending 38 days in the hospital. Life since then has been a rotating door of doctor’s visits and hospital stays. Tongue cancer caused the removal of half of his tongue and all of the lymph nodes on one side. Bladder cancer resulted in the removal of his entire bladder and prostate. Inoperable throat cancer led to 35 days of radiation and chemotherapy. Other cancers include esophagus, gums and cheek in addition to more than one hundred fifty skin cancers. He’s well past the median age of death for his illness in his mid-forties and so we fight each new cancer while the ticking of the clock echoes deafeningly in our ears.

In the reality of life as a caregiver to a chronically ill man and a parent to a teenage transracial adoptee, I now think with a vodka tonic in my hand:

“Life, my life, is full of hard things. These hard things aren’t going away. In fact, they’re probably going to get harder.”

And so here I am, ready to talk about and shine light on the hard things. My hope is that this will, in turn, give others permission to recognize and even say out loud their own hard things, that this will become a place where hard things can be said, noted, accepted, shared. I’m glad you’re here.