“Every single time I go to the oncology clinic I wonder: will I gain hoped today or lose hope today?”
“My cancer is blissfully boring right now- it’s a nice break between recurrences. My hope always rises when that happens.”
“I keep my hopes to a bare minimum- If I don’t feel good enough to get dressed in the morning, I figure I’ll put on earrings
and perfume if I don’t do anything else. Then I just let the day unfold.”
“Hope is a roller coaster ride for me. It swings up and down wildly. I think hoping increases my anxiety.”
“Do I dare to hope? Is it foolish of me to hope? Will the letdown when it is lost be worth what it gives me when I hold onto it?”
“My friends are going on road trips, gardening for hours at a time, and so lightly talking about their future.
They expect a future I can’t anticipate. I know I can’t. So what can I hope for?”
“Longing and hope are two different things.Longing is based in fear and sadness for me.
Hope is focused on finding the good stuff, like inner peace, no matter what.”
“My hope and my spirituality are the same, I think.”
Let’s talk about hope. I’ve always thought of it as a double-edged sword. It’s essential and it’s dangerous, both. It holds us up, and it can feel as though it has utterly disappeared with one scan result, or even the look on a doctor’s face. And yet hope rests in the deepest, most loving part of who we are, giving us the inspiration, the energy, and the will to take the next steps forward when the next steps feel impossible. How many times have we all considered what someone did and asked ourselves “How did she DO that?” Hope pushes us forward, or it calls us forward, but it can bring us to our knees when it is lost. The other day I asked a man newly diagnosed with Stage IV cancer about his hope. He said “Well, before the doctor told me I had cancer he silently handed me a box of kleenex. Would you have hope if that happened?” I said to him “Yes, absolutely, but I’d manage it very carefully.”
How do we manage hope? And WHY do we need to manage it? We do that because hopes can be wildly unrealistic, throwing people into terrifying despair when they are proven to be impossible. Do you recall a time when you felt wild hope? I remember feeling that way when I got a call from the police about a car accident my son was involved in. I desperately hoped that my son was not hurt…then a moment later I wildly hoped that he was alive at all. Hope was essential, holding me up, mentally frozen in place, until I received news I could actually use to stumble forward. But in that gap, all I had was hope. I was feeling so utterly vulnerable. But no hope? That IS despair. So, we need to manage it thoughtfully when we can.
HOW do we manage hope?
Hope is the opposite of mindfulness. Hope flings itself into the future, while mindfulness grounds us in the current moment. Mindfulness is at the root of the cancer motto I came up with years ago: “In this moment I am OK. If that changes I’ll deal with it because that’s what I do.” When it comes to managing hope, there are a few thoughts or suggestions to keep in mind that might help:
- Combine hopes for the future with the practiced ability to drag your thoughts back to the present moment. This may require learning relaxation skills that really work to calm down your brain when you are harboring thoughts of death too soon.
- Make your present moments as lovely and nourishing as you possibly can. Do things you enjoy. Be with people you enjoy, in person or on ZOOM. Learn new skills. Try new things. Listen to music that reminds you of love, softness, and goodness. Lean on your spiritual practices or your faith, if that is important for you. Let it fill you, remind you of what you need to remember.
- Consider what you are hoping for. Examine the range of your hopes. People are usually hoping for many things at the same time. For example, are you hoping for cure no matter what you’ve been told, or hoping for the strength to cope with whatever lies ahead? Or both? One client told me this week “My surgery went well. They told me they got clean margins…but they told me that last time, too. I just hope they got it all and it’s the end of this disease for me”, and she laughed with an edge of fear in her voice. Whatever you are hoping for, please have in mind the best support person or people possible in case your dearly held hope is dashed. This support needs to begin with connection to the most peaceful place inside you (that may have taken work and effort to find) which reminds you of peace and calm, reminds you how loved you are. What kindness do you tell yourself when you are most upset? The people you choose to depend upon outside yourself need to be able to accept you as you are, love you, and be able to listen to you without trying to talk you into changing your mind, or give you unsolicited advice. You need to feel very safe with them.
- Remember that hope never dies, but it changes. The more flexible you can be with what you hope for, the more easily you will be able to ride the roller coaster rocketing you through cancer treatment and beyond. Think about what you have hoped for in the past, and focus on a time when your hopes were dashed. What was the most helpful thing you did for yourself then? What did someone say to you or do for you when you were sitting in that place of loss that made the most difference?
- We all have short term hopes and long term hopes. They all change as we change. A short term hope might be that when you go to the clinic, a nurse who really knows how to access your port is the one who welcomes you. (Or you might hope for the ability to ask for exactly the nurse you want when the next appointment is made.) A long term hope? That your children will be well into adulthood and maturity if your path includes dying sooner than you ever want that to happen.
- People you love most may have very different ideas about hope, or different hopes than you do. One man told me he was hoping he’d be able to find happiness again when his wife dies, while his wife was hoping she’d be cured. It’s easy to know what scares each of them. We can all be separate individuals when it comes to hope. I recommend that you don’t insist that others hope for what you hope for, or allow anyone to insist you carry their own hopes as your own. Hang onto yourself—and them—with both hands and an open heart.
I had a client I’ll call Jeannie, who was very ill. Her cancer was progressing no matter what she did. When I asked her what she was hoping for, her answer was quick and sure: “I’m not hoping for anything. When I die, that’s it. Nothing happens. I’m a scientist, Tess. Don’t ask me about that!” She had decided to take advantage of the Death with Dignity law that has passed in five states, and asked me to be with her and her family when she took the medicine. I told her I’d be honored. I met with her two weeks before she planned her “escape”, as she called it. During that meeting, I told her “I’d like you to do something. When you die, I’d like you to keep a window open for immense, unexpected joy. Just a little window open.” She laughed and said “OK, I’ll do that. You really hope there’s more, don’t you?” I laughed and agreed. Two weeks later I went to her home to be with her and her family at this sacred time. The family was next door at her son’s home, so she and I had some time alone. I found her soft, glowing, and radiating deep peace. She smiled as I gave her a kiss, and said gently, with no word from me, “I didn’t forget. I’m going to keep a window open for immense, unexpected joy.” Her family arrived, and her best friend of 40 years and I went into the living room to give them space. They gave her the medicine, and her friend and I sat in silence looking down quietly, thinking about Jeannie. About 4 minutes later our heads jerked up and we stared at each other in astonishment. “Did you see that?!” she asked. “Yes!” I replied. “What did you see?” she asked. “I saw a stream of light flying through this room and then it broke into a thousand brilliant little stars and disappeared.” “That’s exactly what I saw!” she said, and we stared at each other.
So here’s to the immense blessings of hope, and here’s to learning how to care for yourself and your hope-filled loved ones when hopes are dashed. I think of you all with love, every month.