Jamie Aten, Ph.D.

This past week I had the opportunity to visit the 

National Cancer Institute Emergency Management & Physical Security Branch

. As a cancer and Hurricane Katrina survivor, it was very meaningful to have the opportunity to connect and learn from this great team of professionals.

One of the things I took away from our meeting was a quote they shared from Maryland Emergency Management Agency Director Russell Strickland: 

“Mitigation is the center of the universe!”

 Simply put, mitigation is what we do when we take steps to lessen the impact of negative events.

I am grateful that I had a strong support system that came to my aid after I received my diagnosis of cancer. However, I was surprised by several close friends and family members that seemed to fall away after I made my diagnosis public. Some of the people I needed the most were suddenly nowhere to be found. I felt saddened, hurt, and struggled not to feel forgotten at times. And even though this was a small minority of just a few people, it threatened to make the fallout of my cancer disaster worse.

While there’s no prescriptive way to respond to those who pull away during difficult seasons, there are alternatives I learned that helped mitigate the hurt from worsening.

While my feelings may have been bruised when people in my life withdrew, I tried to reach out. I found these conversation starters helpful in doing so:

“I wanted to make sure you heard the news from me.”

“Just wanted to check in and see if you had any questions for me.”

“I’ve missed you, I hope we can connect soon.”

But I quickly came to the realization that in most instances I just didn’t have the emotional energy it takes to rebuild a friendship. This was especially true when I was actively in treatment. It was hard, but I learned to give myself permission to release the friendship, for a time, and a couple times returned to it when I felt able. I discovered that sometimes mitigating relational strain involves lovingly releasing those who weren’t able to care well for me. Whether I chose to pursue someone I’ve cared about or whether I chose to release that person for a season, doing so reduced this hardship.

I also learned no mitigation effort is foolproof and what worked with one person might not be effective with another; the same holds true with disaster. For example, in one instance, I tried to engage with a lost friend to repair the relationship, yet he remained distant. When that didn’t work I expressed my concerns and aired what I felt were wrongdoings. I eventually came to terms with the fact that this friendship wasn’t healthy for me. I needed to be surrounded by others that helped bring peace to the chaos I was going through. It was challenging, but boundaries needed to be set. But it took 

 this person that fell away after deeply wounding me before I could move forward. When I chose to forgive, I gave a gift not just to the other person but also to myself.

 than who disappeared after my cancer diagnosis. It can be easy to focus on those that aren’t there, but I found it more helpful to focus on those that supported me. I felt encouraged as I became more mindful of others who came to my aid that I didn’t expect, and some that I didn’t even know. I found the more I welcomed others who wanted to help, the less lonely I felt.

But when I look back over the last six years since my cancer diagnosis, I’ve come to see that after I finished my cancer treatments that I pulled away from many people in the community that were there for me. In a few cases I took mitigation too far, unintentionally walling myself from others without even realizing. I still struggle with this at times, but I’ve tried to be more intentional in building and maintaining relationships.

Talking with the emergency management team at the National Cancer Institute I was also reminded how important it is to address gaps in our resilience. Because I had gotten so sick so quickly and had periods where my mobility was limited, I never really became connected to the cancer community. Then a friend of mine encouraged me to post a 

 on Twitter this past March as part of Colorectal Cancer Awareness Month. I was deeply moved by how this simple act brought me into community with others affected by cancer. Though I’ve never met any of these incredible people in person, I’ve found community online with others whose lives have been changed by cancer. For example, I’ve personally benefited from participating in Fight CRC’s

Facebook groups. I’ve also found support through the health social network 

 that facilitates peer-to-peer virtual support groups.

Even though there were some relationships that weakened and even fell apart in the aftermath of cancer, there were steps I could take to lessen the fallout, and even build relational resilience.

Articles

How to respond to others that pull away after the cancer diagnosis.

Mitigating the Hurt When Friends Withdraw

Facebook reminded me of a memory I shared five years ago on this day (May 15

, 2019) in which I posted: “Celebrating being done with my last chemo! We did it! Nurses sang Happy Last Chemo.” Beneath the caption I posted a picture of my oncology nurses surprising me with a small cake that captured them singing "Happy Last Day of Chemo" (sang to the tune of "Happy Birthday").

One of the nurses had also made a large fake candle piece out of some medical supply odds-and-ends. I remembered feeling relieved and excited to be able to share the news with my family and friends. I felt a deep sense of joy and happiness as I thought about the amount of time that had passed since my last chemotherapy treatment.

I felt an incredible sense of joy and gratitude sweep over me as I reflected on the significance of this milestone anniversary. To my surprise seeing this picture unearthed lots of hurts and painful memories, too.

The post also reminded me of when my oncologist told me I was going to need a second round of chemotherapy and feeling like I couldn’t do it. I had been so beaten down by the first round of chemotherapy, radiation and surgery that I felt like all my coping reserves had been depleted. I couldn’t help but remember the way the needle felt every time it punctured my skin each time the port in my chest was accessed for chemotherapy. I remembered how much I struggled and desired to be done with chemotherapy. I recalled how fatigued and weak I felt by the end. Like a marathon runner nearly faceplanting as legs give way, collapsing across the finish.

The nausea, fear, anxiety and worry came rushing back from that day thinking about having to wait a couple weeks before doing another scan. These difficult emotions multiplied when I realized I have my five-year post-chemotherapy scan scheduled in a couple of weeks still hanging over me.

After taking a few moments of further reflection I started to share the post with a new caption. But no sooner than I had finished typing I found myself quickly deleting what I had just written: “Feeling incredibly grateful! 5 years-ago today I completed my last chemotherapy treatment.”

I quickly deleted the post because I could feel survivor guilt trying to form as emotions like joy and sadness crashed into one another.

I sat in silence in front of my laptop gazing at Facebook’s prompt to post something that read “What’s on your mind, Jamie?” As my gaze became more intense, so did my emotions. The updraft of emotions caused survivor guilt to swirl inside of me like a tornado. 

I started to worry that if I shared that it might others going through cancer treatments feel worse. I wondered if I shared if it would pull up the hurt and pain experienced by those that had walked alongside through my treatments. I thought about friends and colleagues I lost to colon cancer in the years following my last treatment session. I felt horrible for feeling happy when so many feel hopeless. I even started to feel guilty for feeling guilty.

As my guilt threatened to funnel out of control, I remembered meeting an elderly woman leaving her last chemotherapy appointment as I sat in the oncology unit’s lobby nearly six years ago waiting to be called back for my first drip chemotherapy appointment.

My nervousness and fidgetiness must have caught her attention as she walked toward the exit. She paused and asked if she could give me a hug. I silently nodded with affirmation. I don’t remember her exact words she whispered while slowly leaning to embrace me. All that I remember is her smile and that she wanted me to know she had made it through this round of chemotherapy.  

As I thought about this small act of kindness from a stranger, the sadness that had swept in like a cold front in the middle of an unexpected storm began to dissipate. My survivor guilt downgraded and eventually passed. Like the elderly woman’s smile that broke through my worry several years before, hope emerged from behind cloudy emotions.

Being reminded of past and present struggles reminded me that today was not meant for guilt, but rather gratitude. If you’ll excuse me, I need to go so I can let Facebook know what is on my mind…

Like opposing wind fronts my emotions collided, spinning off a funnel of survivor guilt on a day I never thought would come.

A Tornado of Survivor Guilt

Life as I knew it had gone out the window.  

I had already spent six months dealing with my cancer diagnosis. I had undergone tests, completed oral chemo, finished radiation and had a four-in-one cancer surgery. I thought I was on the other side of the treatments but it was still too early to tell if they’d been helpful in eradicating the cancer from my body.

I headed toward the cancer center to see my oncologist. After reviewing my charts and labs, he told me he wanted me to start a six-month round of drip chemo treatments as soon as possible. The news hit me like a surprise left hook punch. I thought I was on the other side of treatments. I felt like the room was closing in on me; I struggled to breathe; my attempts to fight back the tears were useless.

In the car on the way home, I weighed the option of possibly refusing chemotherapy or at least postponing chemo for two weeks so that I could visit my family in southern Illinois before launching into the grueling regimen.

I was familiar with the kind of data with which my oncologist was working. I also knew how important emotional health and well-being were to survival odds.  Living well—enjoying the people and places that had always been life-giving&mdash;was one choice I could make for good.

I decided to begin treatments after returning from visiting family.

Mundane moments help salve emotional hurts.

It felt wonderfully “normal” to be with family for meals, to eat familiar food, to play familiar board games, and to see my relatives, like I had done so many times before.

And though I could still barely walk I went with a family member to the movies. Standing in line for the Sprite and popcorn, I was grateful that—excluding the pain I felt with every step I took and the inflatable yellow donut pillow I’d smuggled in to sit on. This was the only way I could withstand the pain from sitting for more than five minutes because of my surgery.

I had almost forgot what it was like to go to a movie. The sweet fragrance of warm buttered popcorn wafted throughout the theater. What could be more normal than that?

Though for many this would qualify as a relatively boring night out, it was nice to feel a little like me again, though brief and fleeting.

When I was first diagnosed, I felt like my life was already over.

Cancer threatened to change everything I cherished. It swept through my life like a hurricane, damaging my health, emotions, security, relationships, work and peace of mind. But I’d also begun to notice that some of the most solid places in the storm I was weathering were familiar experiences I’d taken for granted.

During the storm, the mundane often brought me closer to others and back to myself, and served as a temporary refuge at that point in my cancer journey. Engaging in the mundane helped me see I was loved fiercely. Even the mundane familiarity of a movie theater seemingly offered much needed reprieve. Embracing these experiences had been like finding temporary shelter on dry ground as the storm waters began to rise once again.

In some cases, choosing the mundane can be life-giving, help salve emotional hurts and anchor our lives.

Finding Temporary Shelter in the Mundane

As a disaster psychologist I’ve helped people all over the globe by listening to their trauma stories and helping them tell their trauma stories. But I felt helpless when I found myself in the midst of my own personal disaster—diagnosed with stage 4 colon cancer at the age of 35 (now almost five years no evidence of disease). Telling my three young daughters about my cancer diagnosis was the hardest conversation of my life. I was tempted to sugarcoat the truth and more than once caught myself starting to minimize how serious the situation was. I did my best to break the bad news in a way that was truthful yet hopeful. Here are some tips I learned that I hope will help you navigate the conversation no one is prepared to have.

Take care of yourself so you can take care of your children.

It’s natural to feel anxious about delivering bad news to your children. Take steps to make sure your needs are being met by other adults. Don’t put that burden on your children. Keep in mind that children often follow their parents lead when it comes to responding to a crisis. Children are like sponges and absorb their parents’ reactions, words and energy. Delivering difficult news is never easy. It’s okay to struggle, cry, and make mistakes—I know I did. But remember you are there for your children, not the other way around. Before you share with your kids, give yourself the time you need to notice and process your feelings so you can be fully present to your children’s needs and feelings.

Answer your children’s questions with age-appropriate concepts.

When I was diagnosed with cancer my daughters were ages four, seven and 10. Thought I chose to share the news with them together, I knew that each one had a different developmental ability to understand the situation. When your children ask questions, answer them to the best of your ability, using words and concepts that are appropriate for their developmental stages. Likewise, be sure to create space for questions your children might have. Be honest if you don’t know what to say. When possible, assure them that that you’ll look into it and get back to them. But if you make this promise you must also make sure you follow through. Be authentic with your children but remember to talk to your children as children— not adults.

Resist the natural temptation to put an unrealistic positive spin on the situation.

Throughout my cancer journey—and, if I’m honest, my

—I tried to look on the bright side of everything. It was incredibly difficult for me not to minimize the seriousness of what I was facing when I told my children. It took all that I had not to do so. I realized distorting the reality of what I didn’t want to face did not serve anyone. You may be tempted to paint an unrealistic positive picture of a difficult situation for the sake of your children&mdash;and maybe for yourself. But your children will be best-served if you are as honest as possible about what you are facing. You need not offer all the worst-case scenarios, but do be realistic about the gravity of the situation.

Reassure children that the adults are handling it.

Be aware sometimes children may feel responsible for events that are entirely beyond their control, even a parent being fighting cancer. Be sure to let your children it is not their fault. I knew that this kind of news could leave my children feeling afraid and vulnerable. Sometimes the challenges we are facing are out of our control. This can leave us and our children feeling like life is in a free fall. Though I couldn’t control my diagnosis, I could play an active role in how I was going to deal with my cancer, like seeking medical care. When you reassure children that the adults are managing the situation, you give them permission to be children.

Seek to instill hope among your family. Keep in mind that hope doesn’t mean everything is going to work out how you long for things to be. Hope doesn’t mean the problem will go away. Instead think of hope as what keeps you going in the face of adversity. Instill hope into the conversation by embracing what has helped your family find strength, meaning, and comfort in other difficult situations.

Jamie Aten, Ph.D. is a disaster psychologist, author, and speaker. He is the founder and executive director of the Humanitarian Disaster Institute and Blanchard Chair of Humanitarian & Disaster Leadership at Wheaton College (Wheaton, IL). His latest book is A Walking Disaster: What Katrina and Cancer Taught Me About Faith and Resilience (Templeton Press, January 2019). In 2016 he received the FEMA Community Preparedness Champion award at the White House. Follow on Twitter at @drjamieaten or visit his website jamieaten.com.

Telling my three young daughters about my cancer diagnosis was the hardest conversation of my life. Here are some tips I learned that I hope will help you navigate the conversation no one is prepared to have.

Jamie Aten, Ph.D.

Mitigating the Hurt When Friends Withdraw

A Tornado of Survivor Guilt

Finding Temporary Shelter in the Mundane

How to Talk with Your Children About Your Cancer Diagnosis

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