Allison Breininger: beyond the pain, the fear, the unknown, finding the grace to accept her role and recognize her own limitations as a caregiver, and sharing those truths with other caregivers.
When she was younger, Allison marveled at the exciting and interesting lives others had.
She’d grown up a pastor’s child in a town in Indiana, in a stable family, where ‘nothing’ interesting ever happened to her, and she expected the rest of her life would progress as it always had.
They met in high school choir. He’d kick her chair and when she'd turn around he'd pretend he didn’t do it.
She’d find there was more to Sean.
“We were both really into music, which is how we first connected. I remember the first time he was on my radar was when the teacher was asking for news and prayer requests, and Sean shared that his sister had just had a baby. I remember how sweet I thought that was.
“When I got to know him, I also realized how ridiculously funny he was."
“We dated through high school and then, when it was time to go to college, I said we couldn’t go to the same place, because we needed to ‘test our love’ at different colleges. I went to St. Olaf, in Northfield, Minnesota, and he went to Luther College, in Decorah, Iowa. The schools were about 2-1/2 hours apart.
"In college, I saw all of the other 'high school' relationships falling apart, but ours was just getting stronger. It was as if we were both turning into new people, and the new versions of each of us loved each other.
“He knew, even before we went to college that we’d end up married, but I wasn’t so sure. At some point during that first year, though, I knew, too.
“By senior year, we’d known we were going to get married for years, but I was still waiting on the proposal. Finally, I told him that I knew the proposal was coming, and there was no way he’d be able to surprise me with it. I stormed off to the bathroom. When I came out, he did just that – he surprised me. There he was, waiting for me, ready to propose. He surprised me after all!”
Allison and Sean were engaged while in college but wanted to wait and get married after college.
They were married on June 15, 2002, in their home town of Fort Wayne, Indiana, in the church where her dad was pastor and musician. Her dad officiated the wedding and 40 of their college friends came in from all over the country to sing in the choir for the wedding. The reception was at the Lincoln Museum.
“I kind of hated that I was one of ‘those girls’ that was engaged her senior year of college, but by the time of the wedding, we’d been dating for 5-1/2 years, so we were ready.”
Five years later and still nothing noteworthy, nothing interesting, Allison thought.
In 2007, they started the adoption process for a child in Haiti. They were given a referral for their daughter, Maya, when she was 5-months old and met her in Haiti when she was 7-months old.
“It was the strangest, most beautiful thing to actually be with her, in the flesh – proof that she was real!”
They had been told that the adoption process would take a few months, but by 2009, it was going on two years. Their adoption paperwork was hung up in the US Embassy, so they flew to Haiti and went to the US Embassy to try to resolve the situation in person. Their plan worked, and they were able to take custody of Maya at that point. They had a passport, but were still waiting for Maya’s visa, so they ended up staying in Port-au-Prince, Haiti, for a month.
“Quite a way to start our time as parents!”
One year after Maya’s arrival, Sean began to experience health issues, including a combination of skin cancers, a bout of Hand, Foot, and Mouth disease, and low white blood counts. They went to the Mayo Clinic for testing to find out what was going on.
"We waited for a diagnosis for over a year," Allison begins. "Mayo couldn't figure it out and just told him that he's a guy with a 'weird' immune system - 'just go live your life,' they said.
In the summer of 2011, Mayo realized that the Fanconi Anemia test they'd given Sean had been faulty for the past 18 months, so they gave him a new test. Several weeks later, while he was in Honduras for work, he received an email from his Mayo doctor asking him to call him about test results. Sean emailed him back, saying that he couldn't call him at the time because he was in Honduras.
"So the doctor emailed him the message. He found out that he had Fanconi Anemia by email.
People with Fanconi Anemia may have bone marrow failure, physical abnormalities, organ defects, and an increased risk of certain cancers.
"Initially, we didn't know what to think," Allison says.
Sean was referred to the University of Minnesota for treatment, where a leading Fanconi Anemia expert was on staff. Because Sean had bone marrow failure, initial treatment included an allogeneic bone marrow transplant (BMT). During the BMT, all of Sean's bone marrow was destroyed by chemotherapy and radiation. His brother's stem cells were then introduced into Sean's bone marrow.
Because of the complications of introducing someone else's cells into his body, Sean had to remain in the hospital for 38 days.
"We were thrown into the deep end right away with the Bone Marrow Transplant," Allison says. "That sort of paved the road for what was coming.
“We were fortunate to live just ten minutes away! Because of our proximity, I was able to stay at home with Maya and go back and forth to the hospital each day, which was such a gift. I was even able to continue working and we didn’t have to uproot Maya from kindergarten.”
She reached out and was heard
"We needed a lot of help, and we asked for it. People came forward and helped us.
"We always had someone at our house," Allison says.
"My parents and in-laws took turns coming from Fort Wayne to the Twin Cities to help us 'cover' whatever was needed. My mom took a year-long sabbatical from her teaching job to help us!
"We signed up for 'Lotsa Helping Hands' and we always had people coming to the door with meals and all kinds of stuff that we needed."
Since Sean’s diagnosis of Fanconi Anemia, he’s had 5 different types of major cancers. These include tongue cancer, resulting in the removal of half his tongue and all of the lymph nodes on one side; bladder cancer, resulting in the removal of his bladder and prostate; throat cancer, that led to 35 days of radiation and chemotherapy; and other cancers that include gum and cheek cancer and 150 skin cancers.
So much for ‘normal’
“My life was suddenly full of hard things,” Allison says. “These hard things aren’t going away, I realized. In fact, they’re probably going to get harder.
“All of a sudden, I was spending all my time in hospitals. Since his diagnosis, my life is no longer ‘not’ interesting, but that’s because it’s hard. These last 10 years since Sean was diagnosed, I’ve just been on this road of caregiver. I also have a 13-years old daughter who I’m raising, I have a job, and I have a lot of worries.”
Second guessing, going with their gut, pressure decisions, and hoping for the next day, the next year, the next decade
Sean’s condition is so rare that he may sometimes be the first person with it to experience a given health crisis; so rare that he may be the first to be treated in a certain way. Because of this, each treatment is unique, maybe one-of-a-kind, never been done before.
For Allison, it means always learning and always reading as much as she can about Fanconi Anemia.
“With Sean’s disease, he is 750 times more likely to get cancer than other people. We’re always just waiting for the next cancer to show up and in this world of COVID and Sean’s compromised immune system, it’s really scary.
"There are two components to FA: one that causes bone marrow failure and the other causes cancers, especially head and neck cancers. We learned that with FA, your body will not repair your DNA, so when we go outside, we have to be really careful so his skin is not damaged by the sun, because it won't be repaired.
"We learned what we know about FA in waves. After the transplant, we found out that we weren't done - we were just beginning on this road. Then, a year and a half later, we went to a camp in Maine and met families from all over the world dealing with FA. We learned so much more about it, stuff to expect.
“The hardest thing for me now in caring for Sean is the uncertainty of his condition. I’m always thinking about what the next thing is that’s going to hit us. He can get a cancer, then go into remission, maybe, but then I’m just wondering, ‘what’s next?’"
“It’s an unsettling way to live.
“I second guess myself a lot: ‘Did I ask the doctors enough questions?’, ‘have we gone to enough specialists?’, ‘have we read enough articles?’ I just feel this weight of responsibility when doctors ask us if we agree to a certain treatment. When I ask them their experience with it and Sean’s condition in other patients, a lot of times, they just tell us they don’t have experience with his condition, so it’s up to us to make the decision.
“Last year, he got throat cancer that was inoperable, and we had to decide if he would do radiation, which was typical with that disease. Unfortunately, doctors didn’t recommend radiation for him because the radiation would break down his DNA, and his condition doesn’t allow his body to repair the DNA.
“We had to ‘figure it out’: do we do the radiation and risk irreparable DNA, or do we do chemo that they tell us could be lethal to someone in his condition? Then we have the doctors looking to us like, ‘Well, what do you guys want to do?’"
The constant ‘pull’ of caregiving takes them away from all those ‘other’ things that used to be primary.
A lot of times when she’s caring for Sean, she wonders, ‘am I doing enough for Maya.’ And when she’s caring for Maya, she’s wondering if she should be taking care of Sean or whether she’s spending enough time working.
"I just have to figure out what the most pressing ‘thing’ is that I need to take care of at any given time."
Accepting the things she cannot change, having the courage to change the things she can and the wisdom to know the difference
“I try to give myself some grace. I try to realize that I’m only a human being and that everything else doesn’t have to be done at the same time. The world is not going to fall apart because I don’t get something done for work or answer a phone call from someone.
Every day, Allison sets aside time during her busy day just for herself. She does small things, like early morning coffee by herself, looking out the window, or taking some extra time and reading a book before she goes to bed.
"I try to 'bookend' things just for me. I also spend a lot of time outside in our garden. It's like my living room now."
Seeing the unseen
Over the years of caring for Sean, talking to other caregivers, and going to caregiver support groups, she realized something striking about caregivers.
They didn’t give themselves that grace.
They hid their own pain and spoke of the ‘gift’ that caring for others is rather than the real burden it can be.
They talked about the ‘blessing’ that it was for them.
“They were not talking about how hard it was, how grueling, how scary, how full of grief it was. They were not talking about the reality of the role or the fact that they have to give up so much, sacrifice so much, experience such tragedy in their role as caregiver.
“Maybe they were thinking, ‘who am I to complain? I’m the person who is healthy. I don’t have an IV in my arm. I don’t have these diagnoses. Who am I to say I’m tired sitting next to the guy who’s really sick?’
“I also heard so many caregivers talk about the fact that it’s not in their culture to even ask for help, even if they need it.
“Then I heard caregivers who would say things like, ‘I’m just a mom. I’m just a wife.’
“To those caregivers, I say - you are so much more!
"We've all been given an impossible job. None of us trained for this. None of us have any medical background. We need to give ourselves the grace to realize that we are doing the job of like 15 people in one body.
"It's okay to say 'no' to things. It's okay for us to delegate. It's okay for us to say that it's hard.
"We don't have to like it at all times and say how great it is, because a lot of times, it isn't."
These observations, these realizations, these concerns, led Allison into a caregiver advocacy role, hoping to shine light on the struggles that caregivers face.
For years, she'd been writing about her experiences as a caregiver for Sean. She planned to put them into a book, but was given advice that it would be better to build a community of readers before publishing a book.
In January 2018, she launched a web site called ‘thenegativespace.life’ that focuses on the truths that caregivers live every day.
The mission of ‘thenegativespace.life’ is about helping caregivers - helping them feel valued and recognized.
“Caregivers are the people who are there but not seen, much like the surroundings in a picture or painting that surround the main subject of the work – it’s not noticed but without it the piece would cease to be. In the art world, this is called the ‘negative space’ of the painting.
“The negative space helps compose the picture, but it’s not what you notice. A lot like the caregivers who go to so many doctor appointments and aren’t even noticed or thought about by doctors or nurses because they’re sitting next to the patient.
"They don’t think about us but if we weren’t there, the whole picture would fall apart.
“When I think about the negative space, I think about how we, the caregivers, are unseen.”
A dip into the negativespace.life
Through articles on caregiving, advice, observations, personal experiences, and blogs that sometimes wander into poetry, she welcomes her readers to her world - a world of caring and love, heartache and fear. She talks to them, to us, about her struggles and daily life challenges.
Through her words, we see our own suffering, maybe opening a door of understanding of ourselves and all that we intended to do today
but never ‘got to.’
Her pain is seen directly in one of her poems called ‘The Master Piece,’ where she discusses the slow ‘dismantling’ of her husband, Sean, in order to save him. In it she says,
“It’s as if the sculptor is working backwards.
Taking a masterpiece and breaking it apart
Bit by bit, chisel in hand,
A piece of earlobe here, a slice of the neck there,
Half of the tongue, all of the bladder, much more of the nose,
rows of lymph nodes removed
Never seeming to be satisfied with a work of art
that was perfect to begin with.”
In another, she speaks about her unspoken conversations with doctors who marvel at how rare her husband is because of his rare disorder.
She tells them that he is oh so
much rarer because of who he is as a person and as the love of her life.
As she speaks, you unconsciously say to yourself,
‘yea, he’s a real person who is way more than his terrible sickness!’
The tragedy is real, and it is spoken.
It bleeds from her lines and you feel what she feels, almost.
You feel it because in many ways you’ve lived it.
It is ok to cry.
It is ok to feel sorry for yourself.
It is ok to shout at the sky and scream 'why me?’
If it makes you feel better, it is ok.
And maybe someone will hear you and come over and speak to you and want to hear your story, so you can unburden yourself of all those pent-up smiles and ‘it’s going good’-s
and tell them that it might not be going that good.
And if they smile and their eyes glaze over and they slowly walk away, that’s ok, too.
Every one of us who has cared for someone who faces an uncertain future and who has a love who is being ‘wittled’ away by their treatment to save them has seen this.
It’s ok, I learn. Give yourself some ‘grace’
I'll take some too!
Her writing about caregiving led her deeper into advocacy for caregivers.
In addition to adding regularly to her website, Allison has an active presence on Facebook and Instagram @negspacelife, where she “lets people in on the daily realities of being a caregiver.” She also co-hosts a podcast called “In Sickness” (insickness.care) with another young spousal caregiver. She is a contributing writer for “Elephants and Tea,” which is focused on Adolescent and Young Adult Cancer Survivors and she consults for the Fanconi Anemia Research Fund to help them build caregiver support into their mission and services. She also works for ianacare, which is a platform for family caregivers, facilitating their caregiver Facebook support group, writing for their blog, and participating in webinars and caregiver calls. She recently wrote the creative content for a Young Adult Survivorship website that is soon to be launched out of the University of Minnesota.
“I speak, present, and train at conferences, universities, and medical gatherings on the importance of the caregiver voice,” she says.
“My goal is that caregivers will feel seen, heard, and appreciated. I hope that by hearing my story, they will know that they aren’t the only ones, that they will realize that they can talk about the realities of this role, that they can be emboldened to ask for the help they deserve and share their stories, too."
Stepping out of the Negative Space.
Bringing all that’s important into the light, into focus.
“We don’t know where we’ll be in 5 years. The bright side of it is that we appreciate the small things, because we can’t count on the big stuff.
“I think the biggest thing that Sean’s condition has brought us is that we’ve slowed down. We have a simpler life in a lot of ways than we would have otherwise. We’re together more, appreciate each other more, appreciate the moments that we have together.
“Every single time I see my husband and daughter together playing chess, taking a walk, laughing, whatever, I feel gratitude for that moment, knowing not to take them for granted. Sean and I are much closer because of all we’ve been through, both because of the amount of time we get to spend together and because of the hardships we’ve endured with each other. I think we’re better parents because we see the bigger picture.
“We know what matters and where we should spend our time and energy. And we spend it there!”
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By: Mike McGarry
Mike McGarry is a caregiver for his wife, Tracy, who has multiple myeloma. Mike and Tracy have 2 boys, Joseph, 13, and Jacob, 12. Mike has been a Jack's member since 2017.
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Most people think of family caregivers as women taking care of their aging parents or children. What many don’t know is that 16 million family caregivers in this country are men. AARP is on a mission to break the stereotypes and ensure that all family caregivers, including men, get meaningful support. Men, often due to societal perceptions, avoid talking about their caregiving situation and don’t feel comfortable talking about the emotional and economic challenges of caregiving. However, caregiving is tougher than tough and seeking help is not a sign of weakness but a sign of strength.
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