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  • Nicole Ekiss, LCSW

Making Room for Pain

May 4, 2018. It was going to be a busy day. I had several meetings scheduled throughout the day, including a board meeting in Chicago. My husband was leaving that day for a two week trip to Germany and we woke early to pack and go over plans for the kids and to make sure we had everything covered for his time away. I arrived at work with a fair amount of nervous energy as a result of all that was going on, but settled into my routine. I made it through my first meeting and on to round two. As I listened to teachers reporting on the student's academic progress, I found my mind drifting to other things and glanced down at my phone. As I did, it lit up, and I noticed my Dad was calling me. I immediately felt a pit in my stomach grow. He never calls, it must be an emergency. I grabbed my phone and stepped outside to answer it. He sounded frantic. He's in his car headed back from work but is ardently trying to express that my Mom was being taken to the hospital by ambulance. He had just left work and didn't want Mom sitting at the hospital alone. I felt as if the air was being sucked out of my body, but I composed myself, went back into the meeting to grab my things and excused myself.

If I could pinpoint the beginning of the grief process. This moment would be it. It was the start of nearly monthly trips to ERs, ICUs, ambulance trips, and breathing machines. Words like DNR and Mitral Valve Regurgitation became regular topics of discussion at family meals. My mom had Diabetes, Chronic Obstructive Pulmonary Disease (COPD), and Heart Disease. All of which she had been dealing with for years. It was in this moment though, that the realization set in that these conditions may be bigger than her. We could no longer ignore the obvious and carry on as if she was a typical healthy 57 year old.

Bit by bit, our normal was slipping away. Shopping trips got shorter as her energy waned, until she couldn't go at all. She tried to hold on to the normal as long as she could. In July of 2019, she insisted on taking me up to Bloomington to drop me off at the train station. We went up earlier in the day, had lunch, and did some shopping. She had exhausted herself after the first store, but insisted we keep going. She would wait in the car while I would run in. I felt awful, but knew she needed to hold onto her normal a little longer. She eventually wore down, and asked if she could drop me at the train station early. That was our last shopping trip we would ever take.

When I returned from my trip, things started to decline faster. Her body was failing her, and it was taking its toll on her mind. Some days she was her usual sarcastic self, but other days she was so lethargic that she couldn't even carry on a conversation. She would say the first part of a sentence and stare off, then complete the sentence ten minutes later. She seemed to have no awareness that time had passed. Some days, she would try to tell the nurse who I was, and couldn't remember my name and other days, she was recalling things that had happened that even I had forgotten.

On December 30, 2019 I met her and my Dad at the ER for what seemed like just another standard hospitalization. She was in good spirits and joking around. She was admitted in a regular hospital room and it seemed that it was going to be a quick visit to get some of the fluid off of her. I didn't make it up to the hospital the following day as it was New Year's Eve and we had made plans to celebrate at a friend's house. We texted back and forth a lot that day and she seemed clear and in good spirits. There was talk of sending her home the following day and she was complaining that the nurses wouldn't bring her a margarita. Early the next morning, her blood sugar dropped to single digits and she was moved to the ICU. New year's day was tough for her and her anxiety had started to escalate. The medical team asked to place her on a ventilator overnight to help her through what they called "an acute episode." We waited as they ventilated her and then headed home. At 3:30am on January 2, 2020, my phone rang and I instantly recognized the number as the hospital. When I answered, a woman told me that my Mom was very sick and that I should come to the hospital right away. After getting to the hospital, I saw that they had her hooked up to multiple IVs, in addition to the ventilator and the IVs she had been on when I had left the previous evening. The IVs were the only thing keeping her blood pressure from crashing and after the rest of the family had arrived, the IVs and ventilator were removed and she passed away five minutes later.

The moment I had been preparing myself for the past two years had finally arrived. The ups and downs and never knowing from day to day what was going to happen had taken its toll. The past two years of hospital waiting rooms, lost sleep, meeting friends in hospital parking lots so they could take my kids, leaving work at a moment's notice, and worrying about how this would end had culminated into five minutes. Five minutes of watching and waiting, now knowing that this was the end, that this truly had been bigger than her.

Throughout all of this, I had tried to keep moving forward. The grief was setting in, but when people would ask, I tried to put on a good show. Simple questions like, "hey, how are you?" started to feel like a loaded question. How do you answer that when your world is crumbling? I typically went with the standard "good, how are you?" response and when someone probed further, I would justify the experience in one way or another minimizing my own feelings in order to minimize the discomfort for those around me and ensure people that I was "okay". A lot of time people don't know what to say, but one time as I was robotically going through my spiel about how it was all okay, a person responded with, "yeah, but that still sucks." It sounds so simple, but it was the most profound and comforting statement anyone said to me throughout the entire ordeal. "That sucks." It pretty much summed it up. It struck me as so profound because it was the first time somebody didn't try to fix it or put a silver lining on something that very clearly did not have one.

When Brenè Brown talks about empathy, she uses the term "silver lining" as a verb. "Silver Lining" is what we do when someone tells us about a painful experience, and we respond by trying to make it better. These surface through "at least" statements most commonly. When we use "at least" statements, we have shifted into "fixer" mentality. We see someone's pain, and we are trying to fix it. But the truth is, we don't need to "fix" grief or pain. We need to make room for pain. We do this by allowing ourselves to sit in both the pain we are experiencing and the pain of those around us. It's being willing to be vulnerable and honest. It's saying I'm not okay when we are not okay. It's finding ways to connect with someone else's pain instead of trying to fix it. It's telling someone "that sucks" and being willing to sit with them in their yuck.

When we think grief, we think death. But the truth is, there are so many facets of our lives that are touched by grief. We grieve many losses that are not due to death. Moving, divorce, job loss, estranged relationships, and traumatic experiences are just a few examples of situations that can invoke a grief response. Grief is our natural response to pain, and pain is a natural part of life. This year has brought about a multitude of grief reactions. Covid-19 brought about pain and grief not just through death and loss, but through the loss of routines, minimized social interactions, and disappointment over the things we thought would be and weren't. People have lost out on graduations, weddings, and many other major life events. Even as the state has started opening back up, everything has a different process and set of expectations, and that is stressful. As we prepare for moving forward with life in different ways, it is natural to feel pain and grief over things we have lost.

Grief and Covid-19 is an article in and of itself, but there is another grief response that has taken hold that deserves some attention. This country has experienced a great deal of pain over the last few months, but none so striking as the attention that has been drawn to racial inequities, surfacing as a result of several black men and women dying at the hands of police. There is a clear grief response occurring in our country and the "fixers" have risen to the occasion. People are trying to "silver lining" the situation by minimizing the pain. Unfortunately, many are trying to fix the situation through arguing that it doesn't exist. By labeling the issue as "a left wing conspiracy" and "false media narratives" we are missing the point. By focusing on the importance of confederate statues and pancake logos, we are missing the point. Pain is the point. Entire groups of people are grieving and we have to make room for that pain, just as we would in the face of death or personal loss. Empathy requires us to connect with how people are feeling. There are a lot of situations I have never personally experienced but I can connect with by finding an experience to connect with the feeling. I have never had someone kneel on my neck while I couldn't breathe, but I have feared for my safety and I can connect with that fear. I have never had to worry about teaching my son how to respond to law enforcement for fear of his safety, but I can connect with the feeling limbic system to limbic system. You see, you can't discredit feelings. You can't tell someone that they don't feel a certain way. It is not "fixing" the situation to try and take the pain away by discrediting and invalidating it. This would sound absolutely ludicrous in any other situation. If my friend is grieving the loss of a parent, I would never say, "you need to get over it, this is just a false narrative created by the media. You are being too sensitive." That is essentially what we are doing when we tell the black community that they are overreacting. Regardless of how you feel about the narrative, stop, listen, and connect. Sit in the yuck without blaming or passing judgment. Make room for the pain.

The law enforcement community is also grieving. They have a difficult and often thankless job. Recent events have caused additional stress for them. They are working long hours and feeling beat down, like the world is against them. It is important to acknowledge that they are grieving as well, while also acknowledging that discrediting the pain of the black community does not make more room for the pain of law enforcement. This is not a pain pie. Pain is universal to the human experience and we have to recognize that acknowledging one group's pain, does not take away from the pain of other individuals or groups.

We need to listen to each other, connect, and stay out of blaming and shaming. Feelings are vulnerable and blaming is a means for releasing ourselves from discomfort. If you find yourself blaming, try to think about what the source of your discomfort is. Use empathy to connect with others and above all BE KIND. You don't know anyone else's entire story, so be gentle.

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