OT: On Loss and Grief and the power of Storytelling

On May 5, 2012 my mom passed away.
This is a professional and academic blog, and I have no intention of making it a personal one. But I believe that grieving is a universal enough aspect of our human experience that it couldn’t hurt to share our story.

The first question people tend to ask is whether she was sick. The answer to this question scratches the surface of what made her a particularly inspirational woman. She was sick- she had Multiple Sclerosis, but she believed firmly in never letting sickness get her down. In fact, MS never DID get her down. Her life with MS was smiling and full.

When I was a kid, some mornings I would approach my mom and ask to stay home from school because I wasn’t feeling well. She would listen while I listed my symptoms, and then she would list her own. Then we would shrug them off and go about our day. As an adult, I haggled with my mom seemingly endlessly for her ambitious plans for our days together. I would try to convince her that taking her grandkids (my kids) to the zoo was activity enough for a healthy person, and no one in their right minds would plan more than that.

In April, 2012, my mom went on a cruise with her sister. When she returned from the cruise, she was having quite a bit of difficulty breathing. She had developed a particularly nasty pneumonia. But she repeatedly shrugged off my pleas for her to go to the hospital. When she was finally rushed to the hospital, she told the medical staff off for running too many tests on her, checked out, and went to play Bridge. Despite her worsening pneumonia, she stayed active for 2 more days before calling 911. When the paramedics arrived, she didn’t answer her door. They broke her window to get in and managed to resuscitate her.

While they repeatedly used the paddles on her, I was at a Vegetarian Festival, laughing about funny vegetarian stickers and sharing a plate of veggie ribs with my kids. I received a call from a police officer saying that my mom had been found unresponsive, and I needed to get to the hospital ASAP. We flew out a few hours later (the drive would have taken about 14 hours), and once I arrived at the hospital I got a quick crash course in what it meant to be the only child of a single woman. As the nurse worked the manual resuscitating bag (because my mom was not stable enough on the life support machines), she told me that I held the de Facto Medical Power of Attorney and could ask her to stop the bagging at any time. The nurse worked the manual bag while I sobbed and reminisced and played Motown music for hours, and then my mom stabilized (relatively).

At this point, my mom had suffered severe Anoxia, almost to the point of brain death, in the time before the paramedics were able to resuscitate her. She was in Acute Respiratory Distress, or ARDS, and had not been able to breathe for herself since her resuscitation. Her heart had suffered in the time it had been stopped, and her lungs were stiff from contaminated fluid. Over the course of the week, the only response she gave was an infrequent pupil dilation in response to light shown in her eyes.

The life support situation was complicated by my mom’s attitude toward sickness. In fact, my mom had fought her way back from a coma, against all odds, before. In 1999, she had emergency open heart surgery for a dissected aorta. She defied the odds by surviving until the surgery, and then again for surviving the surgery, again for surviving the post surgery coma and a a stroke, and then again by recovering to live independently afterward.

But this (2012) coma persisted. She never woke up. She continued to have bouts of stability and instability. She was bleeding from her lungs and stomach. I cried over her and talked to her and had long talks with her friends. On the 3rd day, my kids flew back to their dad.

On the 6th day, things finally came together. I spoke to the paramedic who had answered her 911 call and discovered that she had taken her last breath on the phone with them, at least 10 minutes before she was resuscitated. My husband found her medical power of attorney forms, which had a ‘no heroic measures’ clause and gave me the power to withdraw her feeding tube. And we found out why she had left the hospital the previous week and refused to call 911 afterward.

After my mom’s health ordeal in 1999, she was told that she had a second aneurysm, and her remaining life would be limited. She was told that the 2nd aneurysm was inoperable. She often referred to her life as a “ticking time bomb.” I had learned not to hear this talk, as children do. But she had repeated it hundreds of times. It turned out that after over a decade of stability, this aneurysm had started to dissect in 2012. Instead of telling anyone about this, she booked the cruise and devised a bucket list.

That day in the hospital, I learned that she had discussed her bucket list with a few close friends, and she had discussed her wishes regarding life support with other close friends. I put the pieces together and saw that she had expected to die from the pneumonia, and she had put as much of her affairs in order as she could.

It was under the weight and disbelief of this realization that one of her favorite friends, a former political reporter, came to visit the hospital. We had a really wonderful conversation. It was cool to be able to merge my childhood memories of making poll calls on TV on election nights with his cool underlying sampling methodologies. I imagine that if my mom, who had been very active in politics, had been able to chose a conversation to hear while bedbound in a coma, that would have been the conversation.

That night, she had periods of instability, and the next morning she was more unstable. Her lips had started to bleed around the tube. She still hadn’t woken up or breathed on her own. It was too dangerous for her to get a scheduled EEG, and it was too dangerous for her to be turned or cleaned. I decided that I couldn’t let her suffer like this anymore. I met with every doctor, nurse, clergy and social worker who would talk to me. One of the nurses had repeatedly told me that I wouldn’t have to make any end of life decisions, because I could just listen to her body. She agreed with me that mom’s body was loudly and clearly saying it was time. We removed all of her tubes except for the breathing tube. I had no doubt that this was the right decision, but it was still an emotional one.

At this point, we started to call as many friends and family members as we could, allowing them to say goodbye. But we couldn’t reach her grandkids (my kids). Some of her friends in the room noticed three white doves outside the window. I was overwhelmed with a wave of exhaustion and put my head down on my mom’s arm, where I was flooded with memories of our life together. When I put my head up, I felt absolutely peaceful. At this point, we reached the grandkids, who each said goodbye. Then they sang a song for her (Katy Perry’s Firework- one of their favorites). I put them on speakerphone, and everyone in the room was crying. When they hung up, I asked everyone to say their goodbyes and leave my mom and I alone. Once they had left, the nurse removed mom’s breathing tube. She never breathed. Over the next few minutes, I held onto her and cried and told her that I loved her, that I would miss her, and that I forgave her. Then I told her that she deserved all of the riches of heaven, and that if she saw a light, she should go to it and know that she deserved it. As I said that, the most peaceful expression washed over her face, and her heart stopped beating under my hand. She was gone, and I felt absolutely peaceful, even a little joyful. After a week of crying and talking and carrying on, of all of the suffering we had been through, she had found such a peaceful and happy death. I knew without question that she was free.

Now, a couple of weeks later, I am in another phase of adjustment. We cleaned her house and put it up on the market. We organized all of her paperwork and began to work with the court. We had a beautiful funeral for her in her state and a wonderful remembrance for her in ours. And I’m left trying to fathom our new lives.

I am struck by the transformative power of events. Some transformations have names: woman to mother, fiance to bride, fetus to baby, student to graduate. But there is no name for the transformations that grieving brings about.

I found a reference that put a lot of my thoughts about this into words:
http://www.cappe.org/ed_mod/iii.%20Loss%20&%20Grieving%5B1%5D.pdf

Here are some highlights. I didn’t rewrite them. They aren’t mine to rewrite:

“The grieving process is to experience the pain of the loss while accommodating to a changed world and struggling to regain some degree of equilibrium.

Beyond the immediate urgency of surviving the traumatic impact of loss of life is the task to incorporate the death in the family story. At this point the focus is not so much on feelings than on thoughts through reconstruction and relearning one’s place in a changed world.

o  reconstruction and continuity
…“the end point of successful grief work is not relinquishment of the lost relationship but the creation of a new bond, one that acknowledges the enduring psychological and spiritual reality of someone we have loved and made a part of ourselves” (1994, 41,42).

o  The grieving person is not a passive recipient but rather an active agent in organizing and interpreting the meanings of his or her experience of loss and separation.

Grief follows a developmental, systemic process rather a linear progression of successive stages.

Grieving requires active personal engagement rather than submission to a predetermined healing process.

The goal of grieving is towards incorporating rather than recovering from the loss.”

What is striking to me about this resource, and about my experience, is the transformative, healing power of narrative. Putting a cohesive story around these events empowers my mom, empowers me to trust her, assures me that I made the correct and inevitable decisions, and gives me the confidence that she and I and our family will be able to rewrite these pieces into a cohesive, albeit different, future.

I sincerely hope that sharing my experience is as healing for you as it is for me. I edited out some of the parts that are most relevant to this blog in order to open it up to a different audience. I will probably discuss some of these parts in further blog posts if I’m able to move forward with them.

Thank you for reading.

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8 thoughts on “OT: On Loss and Grief and the power of Storytelling

  1. Thank you, Casey, for sharing this. I am Francisco Mora’s wife, Eileen Gourdoux, and your mom was my friend. She bought Shaklee supplements from me also. I was out of town on a business trip during her last days and I also missed the funeral. She was in my thoughts and prayers and I will miss her terribly! I appreciate you writing this tribute to your mom. She was very proud of you and spoke of you often.

  2. i hope writing this helped you at least a little, and that it also helps someone else. thank you for sharing your (and her) story. ❤

    • Thanks, it really did help me to write this out. Writing it out gave me some control over the situation that I wouldn’t have had otherwise.

      I’ve also been reading a lot of what others have written, about ARDS, or about losing loved ones, … That has really helped me, too, and I hope that this can help others.

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    aan expert on this subject. Fine togetheer with your permission let me too take hold of your feed to keep up to date with drawing close post.
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