If we cannot wait, we cannot be still, our actions will have gathered no power. Roderick MacIver
I’m a public person. I’m a public person because I love people and because I am a writer and because I am Curator of Joy at a public creativity sanctuary for the community. And so, because I am a public person, I’m going to share with you a very private moment, actually a string of very private moments. It started earlier in the summer with moments that didn’t seem like they needed to be strung together at all, mild strain in the back that occasionally seized up when I was lying down. And then August rolled around and the pain became more severe and I envisioned a messed up back that just needed time to heal. So out west for three weeks, while visiting our two sons and their families, I transformed myself into “Slow Dinosaur Grandma” as three-year-old Viren and I dinsoaur-hiked on trails through the great cedars and on the path we named “Bear Diarrhea” for obvious reasons when bears eat too many ripe plums. And I slouched down in a position that didn’t hurt when I held my dear sweetly-new-to-this-world granddaughter Adeline Zoe. These strategies seemed to work — and they didn’t. Thankfully, in this string of private moments, there were many out west that bubbled up more precious than words can describe, and I will be forever grateful that I was present, in whatever shape, for this special time of Adeline’s birth. And, at the same time, I think, deep down, I knew that something was amuck.
My husband Cam and I flew home this past Tuesday from the Panhandle of Idaho and first thing Wednesday morning I was in the doctor’s office, and, by early afternoon, after a few hours of tests, I was back in the doctor’s office, and that’s when I heard the news. It wash’t the kind of news that makes a gal jump up and down. In fact, in the string of moments that I am sharing with you, this particular moment was a surreal one. The probable diagnosis the doctor said, was myeloma. And that is the only time that I am going to use this word — because, you see, my spirit doesn’t want me to, and neither does my i-Phone. That evening and the next morning, when I wrote e-mails to family and a circle of women friends that I’ve met with weekly for years, I couldn’t remember exactly how to spell it, and, every time I typed in what I thought was this thing’s name it popped back “My Lemons”, so that is what I’m calling it. “My Lemons” and I invite you to join me.
So what does a gal do when she hears this news and her back is hurting and she’s feeling like a wreck and she just wants to slouch down in despair? She gets her hair cut, of course, and cries a little with her beloved hairdresser, and cries even more with her beloved husband in the early evening who is also crying. And that’s when it gets interesting, my private story that I’m making public. You see Cam moved forward that afternoon, talked to the doctor, listened to his dental staff who have been through their own challenges. “Get right in the car and go to Mayo!” one woman said. And then a thought popped in her head — and bless her for this thought! “What about Brian Burnette?”
We have known Brian since he was junior in high school. Our son is two years younger than him and it was Brian who encouraged our son to focus on his running and this led our son to an amazing running career and to a template for living a healthy life of positivity and to a friendship that is fresh and authentic to this day. So they ran on trails and tracks throughout the Upper Peninsula, and we, the parents, cheered them on. And we, Cam and I, became fast friends with Brian’s parents, Chris and Gary, at the track and cross country meets, and also on kayak expeditions and weekend adventures. His mother, Chris, and I ran together and our friendship flourished over the years. And through many bouts of breast cancer, I witnessed Chris living fully, thriving even into the last bout when she made her transition ten years ago. At that time, Brian had graduated from medical school and was turning his attention toward a career in oncology. (I have to admit at the time I was thinking that it seemed a bit depressing to go into oncology.)
So what about Brian? My husband had thought he remembered something about Brian and hematology. We contacted our boys, found out Brian’s cell phone number; Cam left him a message hoping for more information and a tip on where I should go for the next step. And then he googled him, and that is when Cam’s jaw must have dropped. In the eight years he worked at Mayo Clinic with the best in the world, Brian’s focus was My Lemons, and his website states that now, at Green Bay, he has a special interest in My Lemons. And in the midst of our tears on Wednesday evening, almost at bedtime, on a night of feeling scared and stunned, Cam’s phone rang. And once in a while, during the fifteen minute conversation, mainly one-sided, with Cam listening pokerfaced, my husband’s thumb shot up to the sky. “Thumbs up!” And after this conversation, our tears were filled with a sense of hope. In a calm, soothing, rational voice, he told Cam that I’m lucky that is 2015, that there are effective treatments now that weren’t available ten or fifteen years ago, that My Lemons is very treatable. He also said that Mayo would be a top-notch place to go for treatment, the best in the world; however, he offered that he has the access to everything at Mayo, and can offer the same treatment, with added personal compassion and love. And, he is our friend, and, his mother, I think of her often, but don’t feel her presence, viscerally. Wednesday evening, I did. I knew she had a hand in this remarkable circle of events. And that evening, on the phone, Brian arranged for us to be in Green Bay Friday morning.
And I want to tell you that it became clear to me on Thursday, my day of not eating, my day of lying in bed in some state of shock and anxiety, that life is not worth living if you can’t find the path to your joy — not when you have tasted it as often as I have. I know the feeling of joy; I know it intimately. I know how good it feels to ride the waves of joy, to allow it to course through your bloodstream, to soak it in so deeply, even into the marrow of your bones. And Thursday, I couldn’t muster it up, the feeling that is my best friend. I couldn’t muster up anything close to it. However, family and friends, I told them to please please feel it for me, to see my spirit and my buoyancy and my health, to offer love and support. And you know what?!? It helped. Even in the shape of a train wreck, I felt myself lifted up like those lobster buoys floating along the Maine coast, refusing, absolutely refusing, to sink. And the next morning, two train wrecks sitting side by side in the front seat of the car, Cam and i drove to Green Bay and we kept reading those messages and we kept feeling the ocean of love buoying us, supporting us, our train wreck selves, and I will be forever grateful. And the train wreck feeling didn’t subside until we found ourselves in the consulting room sitting with Brian and a nurse who became a fast friend. And in an hour and a half, in a slow measured voice, in the perfect order of presentation, Brian gave us the facts without an ounce of fear or doom in his voice. And the train wreck feeling, it was disappearing.
And what happened next, it feels like a miracle to me. Instead of being sedated and in a place of twilight non-remembrance for the bone marrow biopsy that will help determine treatment, this fast-friend nurse offered me an alternative. “Do you want to have it done up here in a consulting room? We do them all the time.” And the relief just poured out of me and the yes was exuberant — and where had “exuberant” been hiding these past weeks?!? And I’m not sure how it happened but this procedure that can be quite uncomfortable became fun. A party ensued among the participants and witnesses. “Where should we eat?!?” I asked. And Cam took notes as the nurses chimed in. “Tell me about Joy Center!” someone requested. “Yes, Rocky Mountain Park is the bestI” a nurse piped up. “And Boulder!” I added. Somehow the talk turned to Maine. The doctor performing the procedure, who must have been a little distracted by this high vibe loud pitch fiesta of chatterers, had been to my New England hometown and the talk turned to shipbuilding and Maine accents and Acadia National Park. I’m not sure how it happened and it doesn’t seem like a probable place to retrieve it, but I found my joy again, my best friend joy that is always in there, found it during a bone marrow biopsy. And I asked Cam afterwards if he had felt sorry for me as he witnessed the whole thing from his seated vantage point. And he replied, “Helen, how could I feel sorry for you?! You were having so much fun!”
And I rode the waves of that joy — and those waves, they felt better to me than anything in the world, even better than the salty splash of the north Atlantic in Maine. i rode them that afternoon, not-sedated, but alive and conscious and full of their surf, to a bistro for lunch and a gentle short walk along the river, and a bench in sunlight with a breeze off the water, and to a grocery store for a pint of ice cream which we ate in the car and onto Lambeau Field and to another bistro, rode them right into a motel’s crispy white sheets and a sleep that was filled with appreciation. And yesterday we drove home again, and now I feel it, that I’m down a rabbit hole, forever changed by this challenge that is before me. My brother told me on Thursday that this is my mountain to climb, that I better put on my hiking boots and start moving forward. And I say in yoga that we have nothing to prove, that we are enough, that we are magnificent, that we are adored, that well-being is always here for us. And now, it is my turn to allow these words to flow into the marrow of my bones, to believe them more deeply than ever. My life down here in the rabbit hole is new to me. I’m a mover, a shaker, an athlete who is slow and vulnerable and can’t wiggle and squirm and dance with her body in the familiar ways. Not now, at least. I’m an organic girl who is going to be on strong medication. How do I come to terms with that one? I love feeling adorable. i hope I still can!
I think the most powerful soul nudging that is emerging in the moment from this challenge, and frankly has been emerging for some time now, is toward listening even more intently to what I really want, moment to moment. When have I been accommodating and overriding my own soul’s true longings? Do I have the guts and the strength in my bones to absolutely, absolutely let go of giving a rip what anybody else thinks? That’s a big one. And do I, the competent and buoyant host of event after event, have the courage to be vulnerable and to ask for help?
So this is where I am on this sultry delicious first Sunday in September. Although I’m taking a sabbatical this session from yoga, I’ll be doing what I can to maintain my practice, to go deeper into it. And I’m looking forward to participating in what feels right to me at Joy Center and reveling in a full schedule that will have the place thrumming. And the biggest help that I need and want is positivity and love, and I already feel it from all of you. And if you want to contact me, my e-mail is the way that feels easiest and best. firstname.lastname@example.org.
And remember that my project of the moment is called “My Lemons”. That is the tone that I am setting. And I’m planning on finding my joy, again and again and again, along the journey. I love you! Helen of Joy