“The more we speak of the reality of grief, the easier it becomes. The more people tell the truth about how hard this is—how hard it is to be alive, to love, and to lose—the better this life becomes for everyone. Even for those who think that grief is a problem to be solved.”
Excerpt From: Megan Devine & Mark Nepo. “It’s OK That You’re Not OK.”
It is easy to write about love. It is not as easy to write about losing the love of your life. As I look back across my many years of writing, I realize how blessed I am. Blessed by having had almost 25 years of marriage to a woman I cherished, adored, and loved. She was and is my soulmate. She was and is the love of my life. She was and is the mother of our children. She was and is a very big part of who I am. She knew me. She didn’t just know my story. She knew me in a way that no one really knows me. Except God. She knew my soul, because her soul was my soul; my soul was her soul.
I have spoken and written frequently about love and my love for Maureen, the kids, and the power of love to change everything, but I haven’t written about the inner part. The hard part. The grief part. The part that is alone, even though it is surrounded. The part that keeps itself busy to mask things. The part of me that has been busy for over 3 1/2 years, but that for the first time is awakening to a new reality, a new me. The opportunity to ask the question anew, “who am I?” This is a hard question no matter when you ask it. It is a particularly hard question when you are asked to think about it at 53.
As our priest, Father Mike Adams of All Saint’s Episcopal Church, put it so eloquently at Maureen’s celebration of life on October 25, 2014, “this isn’t the right order.” He was so right. As he put it, “life is supposed to go this way. You are born. You grow up. Graduate high school. College. Get married, Have kids. Have a great career. Watch your kids graduate. Get married. Have careers. Enjoy your grandkids. Then, you get wrinkly. Then you meet your maker, your God.” For Maureen, this order was interrupted at 50. It was also interrupted for me. For the kids. When I dropped off Taylor at the University of Virginia last fall, we reflected that we were both saying good bye for two. When Kyla competes on the volleyball court, we reflect that I am cheering for two. When Katelyn posted on her Instagram on Mother’s Day, she said this, “Today, and always, you are celebrated mom, for putting your family in front of your fight with cancer. Even though, you are not here, you will be in my heart for a lifetime. Happy Mother’s Day.” Words like these cut to your heart. Even more so when your “little girl” is the one writing them.
A few paragraphs later in Megan’s book, “It’s OK That You’re not OK,” she writes this, “We have to find ways to show our grief to others, in ways that honor the truth of our own experience. We have to be willing to stop diminishing our own pain so that others can be comfortable around us.” I write this first post in Grief Is Not a Phase not just to acknowledge the truth of our own experience but to allow grief to be OK by being OK with it myself. Over 35 years ago, Nancy Brinker and many other emerging leaders in the fight with breast cancer made it OK to not hide your breast cancer. In honoring her sister, Susan G. Komen, Nancy didn’t just honor Susan’s favorite color, pink, but honored all women who were hiding, hiding the most painful experience from the world. Cancer.
As I have read Megan’s book on the recommendation of Cheryl Jernigan, a board member and active advocate at Susan G. Komen, I have realized that grief is today’s cancer. We all hide it to make others comfortable. We need to let it out, just like we “let out” cancer so many decades ago. Grief manifests itself in so many different ways. As unique as each of us. It is not just loss but the loss of what we expected life to be, which means that understanding grief is actually important to all of us. Not just widows. Not just widowers. Not just parents that have lost a child. Not just… not just… not just…. well, the list is “just” too long. We are each on an unexpected journey. Heck, life itself is unexpected. Think about it. Think about just how darn unique each one of us is. Without the exact right two people coming together at the exact right moment. Without one very specific sperm inseminating one very specific egg at one very specific moment, we don’t exist. And, because I exist, and because Maureen existed, Taylor, Kyla, and Katelyn exist. It really is all so very, very unexpected.
And, so when the unexpected happens, we experience a whole range of emotions. There is the beautiful emotion of love and life when a new child comes into the world, but there can also be pain. Because, sometimes, along the journey of life, those same cells that create life can also destroy life. Sometimes, those very magical cells that create life “get confused.” They begin to replicate in unexpected ways. Breast cells are no longer just breast cells. Lung cells are no longer just lung cells. Blood cells are no longer just blood cells. They become something different. They become cancer. And the very mechanisms of life turn against you. Turn against your own body. And, in the words of Susan Love, there is “collateral damage.” Collateral damage from the disease. Collateral damage from the treatments. Collateral damage from the unexpected journey itself. And, there is grief. Grief because suddenly life is not as you expected it to be.
I write to expose myself. To expose my pain. Not because I am strong, but because I am not. My “mask” must come off as Fr. Mike and spoke I about over coffee. I remove my mask not for my own sake but for the sake of all who experience grief. Who experience loss. Or who experience a diagnosis that changes the course of their life, forever, cancer or not. To point people to Megan Devine’s book, which is oh, so very good. I write to take off my “mask” so as to say thank you to the many, many friends who have supported our family since Maureen’s passing, supported my work on CLOUD, supported my many endeavors in the fight with cancer. There is no prescription for this journey. Yet today, I know there is a fork in mine. A moment of decision. My legacy in the words of my son, Taylor. My own independent legacy, a legacy born of my many years of love for and with Maureen. Yet, still my legacy. A decision for me to make. For you see, as I look back, our grief didn’t start on the morning of October 21, 2014, the day of Maureen’s passing. It started much, much earlier. It started in the fall of 2003 when Maureen was pregnant with Katelyn, now 14. It was on that day that our lives were no longer going to proceed as expected. It was that day that we got the diagnosis. The day we heard the words, “you have cancer.”
I close with two thoughts. One from Megan Devine and one from a youth group experience I had many, many years ago at a church in Columbus, Ohio. First Megan. It has to do with timing. The idea of when is the “right” time for things. On this unexpected journey, this is one of the areas around which I beat myself up the most:
A friend whose husband drowned the year after Matt died told me she kept a bottle of his hot sauce with her through two different moves. She couldn’t bear to see the refrigerator without it, even though she would never open the bottle again. I kept the container of ice cream Matt and I bought two nights before he died right up until I moved across the country—four years later.
It was nearly a year before I changed the sheets on the bed where we last slept. You will do what you need to do when you need to do it. Not a moment before. It will never feel good.
4 years… for a tub of ice cream… I get it. Time does not pass at the same speed when you are on an unexpected journey. Whether it is a journey into loss like ours or a journey into a set of unexpected treatments for an unexpected disease at an unexpected moment. Don’t beat yourself up. “You will do what you need to do when you need to do it.“
I close with the youth group story because it touches on how important we are to each other. On our respective journeys through life. For those of us “inside” grief, there are experiences that we each understand in our own terms. It is not so much about being alone, but about being us. Being unique. We are not shutting others out but simply “inhabiting” a new space, a new reality. For those “outside” of this space, this grief, know that each journey is connected. You, too, are important. Critical actually to those “inside” grief. And here’s why…
I did not share this story with Fr. Mike over coffee when we were talking about masks, because I needed to process my thinking. And for those that have read The Love of My Life for a while, you know I process by writing. Masks were a big part of the youth group experience I mentioned a moment ago. In this case, clown masks. For an afternoon, each of us teenagers painted each other’s face in clown paint. It was rather surreal. Rather cool, actually. As we finished our clown paint, the youth minister guiding our experience started to share a story about clowns. It went something like this, as she paced back and forth on the porch behind the stained glass window of the church itself…. we’ve all been to the circus, she said. Seen the clowns piling out one after and another, after another, and another as they exit the little car. We’ve also seen the trapeze artist. Way up high. Flying. Gliding. Reaching out to the next bar, without a net. And In some ways, thinking about what I have written today, life itself comes without a net. However, that is where the clowns come in as the youth minister continued. For you see, the clowns aren’t just there to be goofy. To make us laugh. They are the “net.” Literally. If that trapeze artist misses… and falls… the job of the clown, quite simply, is to dive under them. To take the fall. To catch a falling star. To give their life for another.
Look around, someone might be falling. Today. Right now. And you are their clown. Today may be the day that your “star” is throwing away that tub of ice cream. You can be there for them. Clown paint and all. And, so, I close with a note of gratitude. To our many, many “clowns” as we, and I, have fallen. Thank you.