Close
Menu
https://www.compassionatefriends.org/wp-content/uploads/2018/08/Cancer-800x532.jpg

My Journey with Complicated Grief

Eight years ago, David and I lost our 13-year-old son, Eric, to Ewing’s sarcoma bone cancer. He battled this horrible disease for 16 months. For the next four years, I had my own battles dealing with my loss-until I was able to give it a name: complicated grief.

In August 2002, Eric arrived home from summer camp.

At dinner that evening, Eric told David and me about his wonderful summer and casually mentioned that his hip hurt. A few days later, I took Eric to a pediatric orthopedist. He showed me the X-rays he’d taken, and I asked about a shadow I saw. He told me it was gas, and Eric would feel better in a few days. The following week I took Eric for a follow-up visit because he was not feeling better. This time the shadow had grown considerably in size. The doctor didn’t tell me anything at that time, but he arranged for an emergency MRI. Eric had enrolled in a basketball clinic, and after the MRI, he insisted that I take him to the first night.

I hesitated; I wanted him to rest, certain that he would feel better if he gave himself time to heal. But no rest would heal Eric. The next day we found out that the shadow I’d seen was a tumor. Later, this became a focus of my self-doubt: if I had taken him to the doctor sooner, if I had pressed the doctor about the shadow, if Eric had received treatment sooner, he would still be alive.

But at the time I was determined to stay strong and take one day at a time. I believed that children don’t get cancer and that the tumor was going to be benign. On October 2, 2002, my world shattered; Eric was diagnosed with stage 4 Ewing’s sarcoma bone cancer.

Resilience, as defined in psychology, is the positive capacity of people to cope with stress and adversity. But resilience wasn’t a word that entered my mind; taking care of Eric was the only thing I could think of doing. This wasn’t about me; I was determined to keep Eric emotionally and physically safe. Never had I experienced a more stressful situation. My sweet, sensitive, fun-loving son had cancer. This was no time to curl up in a ball and retreat to my bed, although I wanted to. Decisions had to be made, a plan for Eric’s treatment had to be made. While the diagnosis of cancer was overwhelming, I was not going to let that interfere with finding the best protocol for Eric’s diagnosis.

We agreed on the most aggressive protocol available. Most importantly, I told the doctor, this was about Eric. I didn’t want to keep him alive for me; his quality of life was the only thing that I was concerned with. I was his mother, his advocate, his caretaker, and his cheerleader. I needed to focus on making good decisions. I couldn’t run away from this horrific news, and neither could Eric. The diagnosis of cancer was reality; I had to figure out how to best manage it, and that is what I did.

During the next seven months, Eric had six rounds of chemotherapy; two stem-cell transplants; and a hemipelvectomy, meaning half his pelvis was removed. He was in a full body cast for three months. Our entire family had to adjust to Eric’s needs. For 16 months I was Eric’s caretaker, a devoted and loving caretaker. Even one month before he died, when he was unexpectedly hospitalized, I climbed into the hospital bed with him and told him I was sorry that he had to spend another night in the hospital. He said to me, “It’s okay, Mommy, I’m with you, and you make me feel safe.” Four weeks later, Eric died at home in my bed.

When I stood on the bimah to eulogize my son, I asked friends and family to feel free to mention Eric’s name, to share stories and memories with us. Someone sent me a picture of Eric at her son’s birthday party—one I had never seen. It meant so much that there was something new I could know of him. However, for the most part, very few people actually did share such memories. This made it even harder.

I was very unprepared for my grief and how others would react to it. I worried that people would be uncomfortable seeing me emotional, so I tried to protect them by remaining silent and avoiding them. I felt the sting of rejection from friends and acquaintances who viewed me differently and felt uncomfortable around me. I felt people’s impatience when I was unable to shake off feelings of sadness and anger, confusion and loneliness, even years after Eric’s death. I lost faith in the goodwill of others and felt a painful sense of isolation.

When I lost Eric, I felt I’d lost part of my identity; it was as if I didn’t know who I was. The fact that people could not talk about it made it even harder. I had to learn to live in a world without Eric, and I couldn’t do it.

I don’t remember much about those first few years. There were times I was so paralyzed by my grief that I would come home to our empty house after taking my daughter, Lauren, to school, and sit on the couch, staring outside until I had to pick her up again. There were times I felt I floated through the mechanical motions of cooking, cleaning, and holding a conversation. It was a time of numbness and pain so intense it was actually physical. What I didn’t know then was that I was experiencing complicated grief.

Complicated grief is an intense and long-lasting form of grief that takes over a person’s life. People with complicated grief often say that they feel “stuck.” For people who get stuck, nothing seems to change. It is as if the death happened the day before. Time stops, and with it, the mourner’s involvement with life stops. People with complicated grief may believe that their lives are over and that the intense pain they feel will never end. Those with complicated grief sometimes think that by enjoying life, they are betraying their loved ones. I did.

Grief is a reaction that helps us cope with a loss. When grief is working, different feelings associated with grief guide and motivate changes that help people adjust to the death. Uncomplicated grief is a natural process of grieving that involves “upheaval in life” and great emotional pain, but people progress and come to terms with the finality of their loss. While the grief never really ends, people are able to resume their daily activities and integrate the loss into their lives. People learn to adjust and to find ways to stay connected to the person they lost. Most important, they begin to engage in their own lives again. I couldn’t.

Mourning is the process by which people find a way to make some kind of peace with the loss and to restore their own capacity for joy and satisfaction in a world without the person they lost. Grief is always very difficult, but for some people, like me, the process goes awry and they get stuck. Like me, most people with complicated grief don’t know what is wrong with them. They are unable to modulate powerful feelings of sadness, anxiety, guilt, and anger; and they can’t stop yearning and longing for the person who is gone. They have strong urges to touch, hear, or smell things to feel close to the person they lost. At the same time, they get so emotionally and physically activated that they want to avoid people, places, or things that are reminders of the loss.

Even though I knew it wasn’t true, I couldn’t shake the feeling that life was empty and meaningless without Eric. I couldn’t shake the disbelief or shock. I was emotionally numb.

There were many reasons why the grief process went awry in my case. One of the roadblocks was the fear that I would somehow lose the memories that connected me to Eric. I seemed unable to remember the good times and instead was constantly tormented by the bad ones. All I could think of was the suffering, the treatments, the body cast, and the last few days of his life when he could no longer get out of bed or speak when he was gasping for breath because the cancer had metastasized to his lungs. My thoughts frequently turned to self-blame and questions. Why hadn’t I known how ill he was? Why hadn’t I made sure he got treatment faster? Had I made the right decisions? These questions had no answers, and they just made the pain worse. I couldn’t do anything for myself—engaging in an activity was a reminder of the fact that he could not. He could not play golf; therefore, I could not permit myself to either. I had lost my way. I had lost faith in other people. I felt that I had to rely on myself, but I had lost faith in myself. I had nowhere to turn.

However, while the death of a loved one is such a personal event, grief needs to be shared with others, perhaps to remind us that grief is a universal experience. I couldn’t do that until I finally got the treatment that I needed in a research project at Columbia University. I was helped by a short-term therapy that was specifically designed to target complicated grief.

The questions that I was asked when I came for the initial interview were the first thing that impressed me. No one had ever asked me if I was having trouble accepting the loss, whether I felt angry or bitter about it, or a lot of the other things they asked that day. The next thing I noticed was that my therapist seemed surprisingly comfortable talking to me about Eric and how grief-stricken I was. She said that she would not pretend to understand how I was feeling, but she wanted to hear anything that I wanted to tell her. This was the first time I had felt that I did not need to take care of someone else. I began to see a glimmer of hope. What really made the difference, though, were a couple of procedures called imaginal exercises. One involves revisiting the period of death, and another entails having an imaginary conversation with the person who died. By telling the story of Eric’s death repeatedly, I was able to notice things that I had not paid attention to. I started to focus on all the love and support that Eric received from everyone who loved him. These unusual procedures were remarkably effective, transforming my grief and changing my life. There is no one way to transform grief—it is very individual. These imaginal exercises helped me understand the problems that were complicating my grief and finally allowed my grief to progress.

Today I can say that, of course, my life was permanently changed by losing Eric, but I know it is possible to make a new life that is rich and satisfying—though often tinged with sadness.

Now I find myself and my family going and doing and functioning and taking joy in life and its challenges. I never believed that would be possible, but I assure you it is.

There are still times, especially good times, where the pain of missing Eric stops me in my tracks. But there are good times. We share joys as a family that he did not live to share, and that makes me extremely sad. But we still have joys; that is what Eric would want, and that is how it should be. Sometimes the sadness is predictable and particularly evident, such as when we celebrate a holiday or a birthday or an anniversary. At other times it catches me by surprise in the midst of the most routine activities—driving past a baseball field, seeing a boy drive a car, passing his favorite restaurant.

But I believe that I have grown in my ability to be compassionate, to understand the pain that others may be experiencing. Once you know the pain of excruciating, incomprehensible loss, you can’t unknow it. When you endure suffering, you also learn empathy. Loving is a risk one takes—you can’t avoid loving and losing. Love doesn’t have to end—my love for Eric hasn’t ended, and it never will.

 

 

Find a Local Chapter

Use the chapter locator to find out information about chapters in your area. Locate a Chapter by selecting your state and zip code.

Sign Up for the Compassionate Friends Newsletter

  • Phone: 877.969.0010
© 2024 The Compassionate Friends. Privacy Policy
This site was donated by the Open to Hope Foundation in loving memory of Scott Preston Horsley.
BBB Accredited Charity Best America Independent Charities of America 2012 Top Ten Grief & Loss