Seeking True Hope
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Around the new year, I found myself thinking a lot about hope. Wrestling with and asking myself if I am still hopeful. Like is it real or is it just some fluffy idea that people like to portray to make themselves feel better. Can I face the unknown and still be a hopeful person?
I've been working on a project for the last few years, trying to gather people and resources to work on gene therapy for my son Bodey's muscular dystrophy. It's pretty incredible the people that have come together. There is promising science (historically, there has been zero efforts for kids in this population) and still a long way to go. The problem is I need to find money (and a lot of it) to support the initial work. None of the many efforts I've made have worked yet. Money drives vision, it gets scientists to work and people to notice. I found myself in a panic.
Time is passing, Bodey's illness is progressing in small ways. There is not even a map of what his disease will look like. I started asking myself - if nothing changes and Bodey never has the chance for a therapy that makes him even a little better, can I still be hopeful? I decided this is a worthy question to ask myself. One I needed to wrestle with (again). And one that is timely right now - can we be hopeful faced with possible illness, financial worry, loneliness, and the anxiety of an unknown future?
I never asked myself that question when Ethan was sick. I just lived in my then definition of hope. My hope and belief in a good outcome for him were so strong, I truthfully did not entertain the idea that things might not go well. I never let myself entertain thoughts about what I would do or how I would think about life if they did not. That probably sounds completely naive, but I'm keeping it real.
I've been pulled back to a book I found one day while walking through the Harvard Coop, across from Boston Children's, where Ethan spent many days. It's by Dr. Gerome Groopman, and it's called the "Anatomy of Hope." It's a good read if you've got the time. I love how Dr. Groopman defines false and true hope,
"False hope does not recognize the risks and dangers that true hope does. False hope can lead to intemperate choices and flawed decision making. True hope takes into account the real threats exist and seeks to navigate the best path around them...Hope then, is the ballast that keeps us steady, and recognizes where along the path the danger and pitfalls can throw us off; hope tempers fear so we can recognize dangers and then bypass or endure them."
I can get behind this definition of hope. Eyes wide open hope. Not- hiding- from- the -reality- hope. Being scared and still being hopeful hope. Holding them in tension. This is probably not the definition or the idea of hope you might not want to hear from me, but it's the one that I think we can all live with. When we operate in true hope, as defined by Dr. Groopman, we can think more clearly, we can make a plan, we can be honest about what is before us. We can shore up the resources, ideas, and the counsel we might need to endure what may come. It invites us to think differently. To be more innovative.
I am willing to bet that many discoveries and businesses have started and flourished because people were staring down something with a possible bad outcome and yet still had the hope that maybe, just maybe they could change it. And if the change doesn't happen, in time we find the way to endure, dust ourselves off and try again or think about our circumstances in a new way. That too is hope.
So maybe it's time to redefine hope for ourselves and our world? If we operated on this idea of true hope I think we'd have more compassion for each other and for ourselves. I think we'd create more great things. I think we'd desire to spend more time in quiet, meditation, and prayer. I think we'd go inward to figure out what we believe, and where we place our trust.
While there is no crystal ball or magic wand or coronavirus vaccine. There is always hope for our souls. Clear-eyed hope that we are more than our physical presence. That we are part of this bigger heartbeat, this grander love, this more encompassing space. It doesn't mean we are not scared, or the reality of life is not sobering. It does mean we have what it takes to endure. It does not mean it will be easy. It means we have the opportunity to see beyond our present circumstances. It means we can hold this all in tension and not give up.
Today in Illinois, we begin "shelter in place." Yesterday I went to Costco, and I had to stand in line to enter the store 6 feet apart from the person in front of me. I could feel the energetic anxiety all around me. Before that, I picked up my kids' school books for "homeschool" to begin soon. I saw the empty halls and wondered if the classrooms would be filled with the energy and laughter of our kids again this school year. Tears welled up in my eyes. What kind of times are these? Where is the hope?
My message to you today is that hope is, in fact, alive. We can be hopeful because we are loved. By one another and by God. We are not promised easy, or the ideal outcome. But we can weather it together. I remember when Ethan was in the hospital, and a nurse or doctor would come to do a procedure. He'd stare at me with fear. I looked him straight in the eye and told him it would be okay. I held his hand. He locked eyes with me for reassurance. I had no idea if it would be okay. But I stood in that gap for him. I stood in hope and confidence even in the complete unknown. And his eyes softened, his shoulders relaxed, and he found the courage to face what was before him.
So, stand in the gap. Model hope for your kids, your family, your friends on-line. We can do this. We can embody true hope: make a plan, understand what is before us, take action and buoy one another up. We will endure. We will endure. Yes, yes, hope is alive.
Sunday Love to you,
PS >> Next week I'll be back with part 2 of this HOPE series.
