As an organization focused on Joy as a pathway to greater emotional well-being, we want to share a few ideas to help you find Joy in this moment.
Physical distancing, isolation from friends and family, an increased focus on hygiene and sanitation, feelings of anxiety and worry over an uncertain future—these have all become part of our next normal in a COVID-19 world. But for children and families facing serious illnesses like cancer, these are all part of their every day, often during years of treatment.
So, how do they cope? What learnings, if any, do they have to offer to the rest of us, who are struggling with weeks in isolation?
We posed these questions to CCA’s CEO & Chief Joy Officer, Regina Ellis, who founded our organization in 1995 after her oldest daughter Alexandra died of cancer, and to DJ Dalzell, a cancer survivor who was diagnosed with medulloblastoma when he was in high school and is now an active member of CCA’s Young Adult Alliance.
Regina and DJ became fast friends after meeting while DJ was still in treatment. They often text or chat about ways Joy and a focus on emotional wellness can improve the cancer experience for teens. In this blog, they share their insights on how some of these same methods could offer you an emotional boost during this uncertain time.
There are clearly significant differences between what you both faced, and what the world is facing now in a pandemic. But can you tell us how your experiences with cancer compare to what people are experiencing today?
Most of us living in a COVID-19 world aren’t immunosuppressed from medical treatment or in excruciating pain. But there are parallels between what DJ and I went through—living through cancer and being torn away from everyday activities and sheltering in place during this pandemic. There are similarities in these experiences of being socially isolated, or feeling a loss of control, and that heightened feeling of stress, anxiety, and the fear of the unknown.
This pandemic is a reminder of how little control we have over our environment and our health. The world has this way of giving us incredible hardships we must face. But it’s the choices we make that impact the quality of our lives and the lives of those around us. The ways we build resilience and create Joy…that is our choice. Some things are unimaginable, until we face them down, but the choices we make ultimately create the life we want to lead.
You’ve both dealt with physical distancing, isolation, needing to be incredibly diligent about sanitation—things we are all grappling with now. What tips can you share with the rest of us; how can we learn from your experiences?
1: Find the Gift
I like what Regina said, about how Joy is a choice. It’s one of those things I realized in treatment: yeah, I don’t have control of all these other things, but I DO have control over how I handle it. I had to process, in my own way, what I do and don’t control, and what matters to me in that moment. So “find the gift” became my mantra. To me, that meant asking myself, “How can I take what I’m going through and make it a positive experience?”
I like what you’re saying: identify what you do control, identify what you don’t control, and find the gift. That in itself is an important thing. Out of all the things I do have control over, where’s my gift in that?
2: Name What You’re Aiming for
Similarly, something that helped me was finding a word, a phrase or vision of what I wanted, or who I wanted to be coming out of this experience. Maybe it’s a quote, like “I want to survive,” or for some it’s intention when you feel well enough to practice yoga, learn a new language or bike again.” Once you name it, write it on your bathroom mirror, so every day, you’re reminded of and can recommit to that intention.
For me, I used to think a lot about my role as a parent. As Alexandra battled cancer, I wanted her to feel my strength, and for her to experience a beautiful life, even on days or weeks in a hospital room. It was not easy, but I would try to create a bit of magic around her. That was a pull-through: a reminder that even in my lowest, darkest times, how to show up as the person I wanted to be for Alexandra.
3: Ask for Help and Be a Helper
You know how, in cycling, one person takes the lead? The leader is the pace setter and you can draft off of them, and then after a while, you pull up in the front and they draft off of you? When you’re dealing with cancer, and in hard times like these, you can’t be strong all the time. You need to know when to draft and rest a touch and when to lead and take on the headwinds. In doing both, that’s how I believe we pull each other through. Asking for help and BEING that helper.
When we’re in a dark place, and we feel alone and isolated, our instinct is to put a blanket over our head and say, “get away from me, this is too hard.” But my advice is, ask for help. Find the helpers, the survivors, and the optimists, and reach out to them. The act of vulnerability will help pull you up. And you can pull them with you, too.
4: Cultivate Grace
On the other hand, I don’t know about you, DJ, but I felt a lot of tension between wanting to be there for others, to be positive, and how I was actually feeling. This required work developing new behaviors and self-acceptance: it is also okay to be unkept, unpolished, and out of service to others. Sometimes, we have to focus on periods of merely surviving. To cultivate grace and let ourselves feel all those overpowering feelings that come with having cancer, or surviving the death of those we love, or just going through a really horrible time. It’s okay to feel those feelings. Ask those you love to forgive you and forgive yourself. Set an example for resilience, vulnerability, and growth.
Right, we give people these tips about the positive side. But in reality, we have to learn to get through those negative emotions. They aren’t bad themselves, but they have to be handled in the right way to be constructive.
DJ, how did you deal with those feelings? Like when you were your weakest, saddest, angriest self. Your friends are playing football, they’re graduating, falling in love and you are fighting hard every day for your beautiful life. That sucks!
5: Communicate Your Needs
You’re right! At that time, I was at home and really struggling with my mom and dad, and them knowing when to help and when to stop bugging me. And one thing I found really helpful was first thing in the morning, tell the people around you where you are on a scale of 1-10. One meaning, I’m doing fine, you can leave me alone, and 10 meaning, I’m feeling bad and I would really appreciate you being there for me today. It’s not necessarily about the 1 or the 10; it’s about making that regular communication the norm.
6: It’s Okay to be Vulnerable
Going back to your point about asking for help and being a helper. There’s that idea of, it’s okay to be vulnerable. We often want things, but are scared to seem vulnerable, so we don’t ask. And so, they never happen. For me, as a guy in high school, it was easy to say, “Nah, I don’t need anything, I’m good,” even though I really just wanted to hang out with people. But acknowledging your feelings, being vulnerable and saying what you need…it opens the door to finding the other people who do want to be part of your life. In those moments where I did make myself vulnerable, that’s where I started to build relationships that would last.
7: Learn How to Self-Soothe
In some ways, we come into this world, we journey through this world, and we leave this world alone. Cancer teaches that to us in very powerful strokes. So, in my late twenties, I had to learn self-soothing strategies. And now, I find myself pulling that list and leaning on it. One of the big things for me is forcing myself to physically move or stretch my body and exercise daily, even when I’m feeling quite low. And importantly, to reach out to call or text family or a friend each day for an emotional lifeline. What about you, DJ?
For me, getting into a regular exercise routine is a big one. You see it in different studies: forcing yourself to do some type of regular exercise gets your body moving, and your endorphins going to help improve your mood. But there’s a physical aspect to it and a psychological aspect to it as well. Like the idea of “make your bed every morning.” I don’t do that myself…but it’s the idea of getting into a routine of accomplishing things. Even if it’s little, it puts you into a different mindset.
8: Create Meaningful Connections
Physical distancing is a reality for cancer patients, and it is our next normal in this pandemic. That loss of connection with the people, things, and places that we love is painful. It really is.
What that brings up for me is the idea of meaningful interactions. When I was in treatment, the best thing about hanging out with my Chemo Pal mentor, Josh, wasn’t the bag of activities he brought with him. It was the talking, the time together while we were playing with LEGOs or talking about sports or video games, that made the difference. We bonded over our common interests.
Right. Doing shared activities builds intimacy and connection without the pressure of 1:1 talk. It’s a way to build connectivity, and we can still do that in isolation, like calling a friend and cooking dinner together over FaceTime.
9: Define Must-Have Moments & Create Joy Now
For me, being in the hospital so often and seeing Alex so sick, we were able to have some beautiful moments and adventures, but we couldn’t really go anywhere. We would put up a tent in our house, host a tea party with her school mate in the hospital or fill her bedroom with lights and turn it into an enchanted forest. But otherwise, we couldn’t go anywhere. It was very similar to now.
In spite of everything, when our world shrinks to the size our homes or hospital rooms -Joy is joy. For us that meant defining must-have moments to create Joy now. When Alex was sick, there was a point where we knew she had weeks left to live, so we asked ourselves, “What are our must-have moments?” And then one by one, we checked them off our list. It gave us a sense of empowerment and the beauty of shared love. And for us today, it helps to define the life you want to live and achieve it, regardless of what happens in the world. How does that land with you, DJ?
I’m taking a philosophy class right now, so what I hear from that is this idea of “a life well-lived.” And how do you live fully if you’re trapped, or in a state where there are all these choices that are now taken away. If it’s cancer, if it’s quarantine…how do you still pursue living a good life with those limitations?
You said that perfectly. It’s about how we define and re-define a life well-lived, and how we create moments of Joy, relief and comfort that don’t involve travel. We still can choose to create, and re-create, a life well lived. 💜
Please make a difference today with a gift to our JOY RESPONSE FUND—your donations will be matched through June 19.
In April, 84% of the requests made to our Link program were COVID-related. With your generous support, our vulnerable community will stay connected to the healing power of JoyRx virtually and remotely – through music medicine, the friendship of Chemo Pal mentors, and assistance with essential needs.