Mariah Baril-Dore

A Stolen Glance

I looked back over my shoulder at you, a stolen glance.

We had already said our goodbyes for the day.  We had hugged and said I love you and you had given your obligatory peck as you wrapped your arms around me, your way of greeting and parting with love. All things we did every day as we parted and yet this night as I walked away, I looked back.

You were gazing back at me. 

I can barely describe what was said between us in that glance.

I wanted to take it all away.

No, I wanted to take you away. As I looked at you, the pain and certainty of your future made me want to rage and tear down the walls. I wanted to whisk you away from the nursing home that had suddenly become your permanent home. Despite their best intentions, I wanted to take you away from the people who had strangely become our family- the CNAs, the nurses, the occupational therapists, the dietician, palliative care, hospice. Strangers whose job it was to help you with the most intimate of tasks, for them routine, for you; each time a little piece of you taken. I wanted to take you away from all the contraptions; the tools and equipment you needed to do the simplest of things. You would never ask for help. A self-made man from an Irish family in Litchfield, your quiet, gentle and goofy, un-assuming nature seemed contradictory to your past as a Marine in Vietnam.

I left you, every day, in that nursing home, because neither of us could find a solution. What were we to do? There was no way out, but through, into the eye of the storm. I sometimes wonder about the days where everything shifted, where the tide turned, where there was no going back. Some were so simple, such small losses, seemingly. The day you first admitted to me that you had to use a wrench to open your gas cap because your fingers could no longer hold it. The day I taped all your rugs down. The first day I thickened your juice.  The first time we talked about strategies to conserve energy, to maximize your days. The moment I realized that I was no longer just your daughter, but your unofficial nurse.

You had an apartment, not handicap accessible. Suddenly, you were “handicapped”. We had tried to go it on our own, quietly making adjustments. I had moved in, slowly, quietly, sleeping on the couch and taking over tasks that had once been simple for you.

You had aspirated and been hospitalized 4 times in 3 months and one of those times had put you on a ventilator. You had gone to a surgery you had considered routine, and had never walked again. You had gone to the hospital for pneumonia, and never went home. You had gone from walking to needing a cane to using a walker to using a wheelchair to suddenly using an electric chair. I can’t remember the name for that chair. Only that it felt so wrong.

It felt so wrong. No matter. I had no time to sit in the darkness, no time to wonder why. In those days the feelings seemed less important than the doing. I had to keep doing or else I would drown in the darkness.

I held your hand as you waded through your own darkness. It was in these moments of stillness that I ran through what I now understand are nursing diagnoses. At the time, they were a running list of the ways I was not only keeping you alive, but also keeping you well. Risk for isolation. Ineffective breathing pattern. Ineffective health management. Risk for infection. Risk for aspiration. I found my brain making mental lists of your risks, making assessments, making necessary changes, and giving necessary education.

I got so good, so fast, at helping you transfer to my car and so strong I could practically toss the wheelchair in the back with my pinky. It felt like the best of times, despite being the worst of times. We had a blast. It felt like we were kids sneaking out of the house rather than father and daughter wheeling out of a nursing home.  At first, we often wheeled out of there without even signing out, which essentially meant I was kidnapping you. We got tattoos together, we ate donuts, we went to the movies, and we sat in the sun where we had countless conversations about life, death and love. As you lost your body, your mind grew stronger. As you lost your body, you shared your soul with me. What an immeasurable gift.

There were a countless number of things that just had to be done, and I wondered if what I was doing could ever be enough. A part of me wanted to give up, so many times, when it felt impossible. When I couldn’t lift you out of my car so you sat in my front seat helplessly until I squatted down lower to get you into your wheelchair, my body trembling under the strain, yours limp and useless. When I had to help you shower for the first time because it was no longer safe for you to stand.

We were constantly confused. We were always negotiating. We could only go certain places of course. Sometimes we’d get there and you’d fall asleep, so tired from the effort. You were so tired and so calm. Sometimes I would get angry with you, for always being so damn calm. You were calm and soothing and the brightest star in the darkest night. How did you do that? 

You were the one who woke up in the morning realizing you could no longer move your toe, and then your foot. You were the one who realized you would never go home again. You were the one whose lungs filled with fluid. You were the one who was told, “I believe you have Lou Gehrig’s disease…” These things were not happened to me. And yet, I was so angry that this was happening to you, and so angry that I couldn’t find a solution, and so angry that you weren’t angry and just… so angry.

You could calm me in a heartbeat.

You taught me the beauty of kindness without ever telling me to be kind.

I was volatile and voracious and vocal about you and what you needed. The nurses and aides and nutritionist knew us well. They knew you for your charm and whit and knew me for blowing in like a hurricane on your behalf. I stood strong in my fierce advocacy of you. You loved me for it, but you also loved me for simply being there. There, in the eye of the storm, standing with you.

I showed up like a tidal wave and had the last drop wrung out of me, not by you but by the things that happened to you. I was wrung out by the deep experience of holding hands with the man who raised me as he looked death in the eye.

That glance, between us that night, I remember thinking - I do not want to leave.

I felt like I was constantly leaving you. 

That glance, that night, I realized that you saw me. 

You saw me. And smiled. 

You saw me, in those moments of angst and fire and you saw hope.

You saw me, and forgave me my weaknesses.

You saw me, and thanked me as the smile spread over your lips and into your eyes.

You saw me and I saw you. 

I saw the mortality on your face. That you would leave me.

I saw that you would leave, and I would be holding your hand.

I also sensed the immeasurability of the gift you were leaving behind.

The power of a quiet strength.

The knowledge that we carry all we need if we sit and see each other.

The truth that we all know what we need if we talk less and listen more.

I continue to spend my days now listening, in all the ways you taught me.

Mariah Baril-Dore is somebody who thinks talk is cheap. In a conversation about something important, she would say “show me” instead of “tell me about it”. Her writing is her way of showing you some of the most intimate and raw moments we humans can experience. She believes in caring for people’s souls as much as she does in caring for their bodies.   She believes that health is an activity, and that care is both a condition and consequence of that. Mariah is currently a GEPN at YSN, and the truth of her dad’s words are driven home daily; “you can’t become yourself by yourself”. She is humbled by everything she has been shown and honored to be a part of this community.