Viewpoints Joanna Buoniconti: Breaking up with former caregivers

  • Joanna Buoniconti is an English and journalism major at UMass. SUBMITTED PHOTO

Published: 9/20/2020 4:00:04 PM

I have had nurses for as long as I can remember, but it never gets easier to say goodbye to one.

“No one will ever love you until you’re able to walk,” one of my daytime nurses casually stated while she was helping me use the toilet one afternoon, before a shift change a year and a half ago. My bladder tensed as the words hit me like a bullet.

A few months prior, I had started a treatment that was gradually allowing me to regain some strength. But despite that movement forward, I had come to accept years ago that I would never walk. It hurt more because she was the nurse that I was closest to for the longest time. She was the last person I expected to hear those words from, which only made it more gut-wrenching.

Since I was 10 months old, I have been completely reliant upon caregivers for every intimate aspect of my life, from bathing to clearing mucus from my airway. At 21 years old, I’ve learned some things about navigating this relationship. Yet at the same time, I feel like I know nothing at all.

To outsiders, the bond between a caregiver and patient is seen as sacred. For those of us who know the harsh reality of allowing strangers into our homes day after day, know it can often be anything but.

Because I was privy to the workings of the health care field at such a young age, I’ve never known a life without an elderly nurse trailing behind me, even as I attempted to play tag with my classmates on the playground. That was my normal. It wouldn’t cross my mind until I was a teenager and painfully self-aware of my unique circumstances, that I would realize it wasn’t everyone else’s.

And just like any other relationship, there can be personality conflicts, which can be difficult to navigate due to the inherent lack of privacy. And when a good nurse leaves, it is a grueling adjustment period to both find and appropriately train someone new in my extensive care regiment.

It can become all too easy to become emotionally attached.

An elderly nurse who started working with me when I was 3 became my favorite, and often only, playmate throughout much of my childhood. Over the years, she had assumed a motherly authoritative role over me as we spent hundreds of afternoons playing with dolls. She never failed to exert what power she held over me if I ever dared to misbehave.

But things changed when I turned 13 and was dealing with the emotional repercussions of my parent’s divorce. The nurse whom I had once adored, seemingly turned on me. Throughout the years that followed, she and I would inevitably butt heads because the little girl that she was once able to control so easily had grown up and was now not afraid of asserting what little power she had over the situation.

She quit two months after my 20th birthday. She remains the only caregiver I was glad to see go.

To be fair, I have lost track of how many less-than-ideal health care professionals hands’ I have had to depend on. Or more damaging, ones that I’ve grown very close to who have left without any regard for me.

Another nurse came into my life when I was 9. She stayed for 10 years. Slow to trust people, I took a while to warm up to her. But once we acclimated to each other, she became my confidante to me and an incredible caregiver.

Unlike my other longtime nurse, she was a lot calmer. She treated me as an equal and with the utmost dignity, which I came to appreciate greatly. Throughout high school and my first couple of years of college, I saw her as more than a nurse; she became a close friend to me. She was one of the few people in my life that I could be completely myself with. She consistently reminded me that I wasn’t alone in my emotions, and urged me to allow myself to feel them: instead of my usual coping mechanism of pushing them to the side.

But then she turned into a person I didn’t recognize. She departed from my life the summer of 2019, and sent me a curt goodbye note over email. It hurt to have a vivid example of how someone could so cavalierly walk out of my life.

While my friends cry on my shoulder about how their ex-boyfriends trampled all over their hearts, I can relate but on an entirely different level. As far as I am concerned, when a nurse leaves my life after so many years, it’s nothing short of a breakup. An ugly one with so many loose ends left undone, and no opportunity for closure.

In the months that followed, I blamed myself for letting myself get close to her. The older I became, the easier it became to form friendships and the harder it was when they would eventually depart.

I spoke to a friend who shares the same neuromuscular disease that I do, on the topic. “Their place in our lives are temporary, but I try to treat them as friends while they are in my life,” he said.

It seemed like treating them as friends had been my mistake. I have had nurses in my home, five days a week, for the majority of my life. The rules of a strictly professional relationship just don’t apply. And I have spent too much time battling the prospect of whether I should let future caregivers get close to me. Is the prospect of trusting someone and opening up to them for a brief moment in time worth it when they will undoubtedly leave? Over a year and a half later, I still don’t have an answer.

Joanna Buoniconti is an English and journalism major at UMass.
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