As my wife sat in the treatment room during chemotherapy, she would sometimes sing to me a song that became a sort of anthem for us.
Headphones on, she’d hum and sing, “We ain’t gonna give up on this now, we refuse to turn around. This won’t be easy, no way, no how, but we won’t back down…”
The song was ”We Got It” by Ne-Yo from The Wiz, one of those live TV musical events we’d watched together after her surgery back in 2015. In some ways, she was Dorothy and I was some unfortunate combination of the Scarecrow, Tin Man and the Cowardly Lion. I would chime in, “And when the night is so cold, dark and lonely, All you got to do is look at me and hear what I say…” And then together we would sing, “We got it! We got it!”
“I got you…”
I got you.
When Margit asked me to share my experience as a “caregiver” during her treatment, I felt a bit uncomfortable. I saw it as an experience that wasn’t exactly my experience to share. I was with her in the eye of a storm that grew from that first diagnosis to two surgeries, multiple chemo treatments and the mental and emotional aftermath. I was a witness — sometimes a quiet bystander, sometimes a steadying presence. But the more I thought about writing about it, the more I realized that my experience in Margit’s journey through her treatment was a unique window into her struggle. It was not as an onlooker but as a partner. I wanted to take on her fight because it was our fight.
My job as a caregiver played itself out in daily acts. Once, after surgery, I had to lift her legs to change her socks. She realized she was too weak to do it herself and began to cry. I cried too. I know she wasn’t crying out of embarrassment but from a sense of helplessness and her belief that I should not see it. I looked away, not making eye contact but trying to be a dutiful helper. I wiped away her tears. We always worried together about what could come next, but I knew one of us always had to be present. Not full of “what ifs” but cultivating hope.
Caregiving also meant that I had to present some semblance of normalcy and routine. Checking her temperature, making a mineral broth in the crockpot from the recipe in the Cancer Cookbook or calling on friends and family for support and to give updates. We were so grateful for the friends who would stop by with meals or send care packages to Margit. It was my job to keep those visitors at bay, to protect Margit’s energy and allow her to rest.
[pullquote]We cried together. We laughed together. We took all news — good or bad — together.[/pullquote]
Rest was extremely important in her healing — there were nights when I would sleep on the couch and set the alarm for every couple of hours to check in on Margit. I learned to sleep lightly to hear if she needed help to get to the bathroom, needed her catheter bag emptied (which she had for a few weeks), needed water or something to take her nausea away. I tried not to be upset in front of Margit as she worked her way through treatment. I failed on multiple occasions. We cried together. We laughed together. We took all news — good or bad — together.
As caregivers, we wage an internal war to assuage our guilt. We balance care of our loved ones with our own sense of pain and concern. We don’t want to lose ourselves in this moment of crisis. We start to question everything as we go about routine tasks. Some days the thought “why can’t I take away this suffering?” becomes “please take me away from this suffering.”
You find the right balance, and then some days you just can’t. I felt blank at times. An empty notebook only to be filled with tasks, lists and instructions. But I forged ahead, doing my job to bring comfort, support and aid in treatment. To be a nurse, be a friend, a Netflix companion and, on particularly bad days, to just quietly be there.
I didn’t want to be praised by friends and family for something that came as easily as breathing or eating to me. Caregiving is an act of love. And despite Margit writing about it here on TueNight, there was still a lot of privacy around what she was experiencing that we shared between the two of us. It made me uncomfortable to have to explain to others what Margit was going through. It makes me uncomfortable to talk about it now.
The truth was, even though I was there for every moment, I couldn’t say that I truly understood her pain or the shear misery of chemo. I wasn’t going through it, but I was her co-pilot, keeping up with every symptom, looking look for signs of swelling or infection and even tracking how often she used the bathroom.
When your spouse gets sick, no one tells you what to be prepared for so you just tackle whatever comes your way. My love at times went unstated but carried out with diligence and care. There would be times in the middle of the night as I tucked Margit back in to bed with her favorite blanket to whisper, “ I love you…I got you. We got this.”