He was the one who had just had surgery, but I was the one who was crying.
Home from yet another day spent at the hospital, this time to biopsy a suspicious spot in the same area of his throat where he’d recently completed chemo and radiation, I found myself weeping on my husband’s shoulder.
For once, my sadness didn’t have anything to do with the results. In fact, the initial report was good. Perhaps it was because of the lack of bad news that these other feelings found the space to emerge. My concern that night?
“Everyone is out there living real life and all we ever do is go to the hospital!”
Minutes before, grateful to be home, I had collapsed on the couch and was scrolling through social media. Doing so on a day in the heart of the summer meant seeing photo after photo of how our friends had spent their days: on beaches, mountains, campgrounds, cabins, road trips. Smiling families, sun burnt couples, splashing babies, ice cream, roller coasters, kayaks, outdoor music festivals, and barbecues.
In contrast to this veritable catalog of summer bliss, I had spent my day and many before it, in the outpatient surgery waiting room. There I was assaulted by the sounds of three televisions playing different daytime shows. The windows are tinted such that the weather seems to be perpetually overcast. The frigid temperatures in the room require layers to be worn. Food isn’t allowed and leaving the room for more than a few minutes at a time is discouraged. The disparity between what my peers and I had experienced that day was stark, and, in this moment of exhaustion, felt unfair.
As I cried, my incredible husband, hospital ID bracelet still on his wrist, looked at me and said,
“There is nothing more real than the life we are living.”
With that sentence, my perspective on our entire day shifted.
I realized that at the beach or the water park or the zoo, it is easy to hang out in the shiny, smiles-on, surface-level parts of yourself and oh, what a blissful place that is.
But when you walk into the hospital for a procedure, the layers you wear in the outside world get peeled off, revealing the parts of you that you don’t typically display, talk about, shine light on. The parts that are very real.
Think about it: one of the first things to happen in the hospital is that you strip down, hand your clothes to someone you just met, and wrap yourself in a flimsy crispy gown.
Layer one: gone.
Physically more vulnerable, you then begin to discuss with this stranger your medical history, things your closest friends don’t know and certainly aren’t talking about on this summer day. When did you last poop? Do you still take those meds for depression? How much do you drink each week?
Layer two: revealed.
While our counterparts debate, “Canoe or kayak? Hamburger or hot dog?” our decisions are high stakes. We have to decide if we stop the arrogant resident who assures us he can get this IV in even as the sweat forms on his brow, and if we should give the surgeon permission to make decisions in the moment based on what he sees in the operating room.
Then we are faced with the topic most people spend their days and especially their vacations avoiding: death. Each doctor that enters the curtained room brings with them warnings of what might go wrong. Followed up, of course, by assurances that the chances are low. But it’s too late. The seeds have been planted. Unlike our friends who on this day raced by the warning signs at the amusement park, the dangers in our situation have been made frighteningly clear to us. In fact, we signed a form on which they are listed in detail.
With the potential of death front of mind, words of love and devotion are spoken, embraces are shared. This is not a day to assume your beloved knows how you feel. If there was ever a time and a place for declarations of love, it is in this hospital, in this moment, where things are very real.
Back in the waiting room, I watch the electronic board that tracks the status of surgical patients, hating that someone on the other side of it knows more about the current state of my husband than I. Knowing there’s a real possibility that he might not wake up, I stare, looking for clues about his well-being on the screen, as friends a few miles away watch the scoreboard at the baseball game.
The surgeon appears and walks me into a small consultation room, a stack of surgical photos in his hand. In this moment, while my husband is still asleep, I am told information about how the surgery went, what the pathology report showed, what the next steps will be. I learn before my husband the details of our new reality.
When I am finally allowed to go to Post Op to be reunited with my love, the reunion is not like that after a typical few hours apart, but instead feels epic and celebratory as if we, too, climbed a mountain and rode a roller coaster today. Our adventure won’t appear on anyone’s news feed. But in this moment, there is nothing more real than the beauty and miracle of being alive, of being in love, and of living to see another day.
Allison Breininger has been caregiver to her husband, Sean, since 2011, when he was diagnosed with Fanconi Anemia. High school sweethearts, the two had been married for 9 years at the time of diagnosis, and had brought their toddler, Maya, home from Haiti, just one year earlier. Allison has been by Sean’s side through a bone marrow transplant, seven different types of cancer, a hip replacement, among other things. She writes honestly and openly about the challenges and realities of being a caregiver at her site thenegativespace.life.
You can follow Allison on social media @negspacelife