I walk past a sign in my hallway regularly. It has the familiar phrase, “Life is not about waiting for the storm to pass, it’s about learning to dance in the rain.”
I think about other cliche phrases like, “Into every life, some rain must fall,” or, “You can’t have a rainbow without a little rain.”
And I picture a mom and a daughter in their rain boots, splashing and laughing with a rainbow peeking through the clouds.
Then I retreat further into my corner, chastising myself for even being a failure at that.
I am a rational person. I am numbers, data, and spreadsheets all day. I understand the gravity of world events. I comprehend and ache for epic loss, severe illness, and struggles right around the block. I have gratitude for abundant blessings. I adore my husband. I am watching my daughter flourish on her own at college. I believe in God, and have faith that we are in a resting place on the journey to eternal life.
Yet, I struggle.
And as I have mentioned so many times before, the reality of “parallel truths” sometimes aches in the depths of my soul.
The rain, right now, feels more like a neverending storm cloud. Some days I do not see the sun at all, even when I know it is shining brightly. And I mean that literally and metaphorically.
I have always been one to keep it real. Especially here. I want a mom who finds this page for the first time, soon after a diagnosis like ours to feel there is hope. There are kindred spirits along the road they are about to get on. Yet, I will not ever lie to them. They already know the truth in their hearts. This is not an easy journey.
It took a long while to rid my daily encounters of those who are prone to “toxic positivity.” As I said before, I am acutely aware the blessings of this disease come from the “warning flares” we get along the way. And as I watch others suffer from cancers they did not see coming, I give thanks.
But, I am tired. And I am allowed. This endless cycle of medical procedures, of surveillance, of surgey, of billing battles, and the like, is not for the faint of heart. And if I want to maintain the strength to continue this journey at the top of my game, I need to allow myself to find a bench and sit and rest. I need to acknowledge sometimes it is raining sideways, with hail, and lightning. Sometimes I have no jacket on. Sometimes my hair is matted and I am chilly from weathering the storm.
In the more than a decade that we have traveled this road, I have learned stamina is essential. I have learned it is often lonely. I have learned that there are no holidays. I have learned that “regular life” still comes for you, even on this Rare Disease pathway.
And if I am honest my biggest struggle currently is my search for a new “release.” I love to walk. Well, I loved to walk. Hours, miles, music in my ears, sunglasses on my face. Apple pay for a bottle of water now and again. It was how I kept myself together in the early years. A new pair of sneakers and a FitBit. My luxuries. Except, my foot. January 2019. Before the world shut down, everything changed. And honestly, the single thing that has been the hardest to overcome, far more than the loss of my breasts, my uterus, my thyroid or anything else this disease tries to take, is the loss of those free, endless, peaceful walks.
Because on those walks I would appreciate the birds, the flowers, and the smiling children. On those walks, I would sometimes sing at the top of my lungs without a care in the world. On those walks I let it all go, I detoured off the main road, and I always found my way back, better, and stronger.
I can’t walk far right now. Every step sends pain up my left leg from the foot that twisted on a child’s chair in my classroom over three years ago. I CAN walk, but it hurts. And instead of setting me free, it makes the weight of the world heavier. And when I try to push, I am reminded of the new pain in my opposite knee, and the muscle knot in the side of my leg, where the body tries to compensate for the limp I try to hide. On the days I work, I count each step. I ration the Advil. I take the stronger medication at night, so I can try to sleep. I wrap it, I brace the other knee that is failing, carefully under my jeans. I am never without the painful reminder of that injury.
I don’t know if it will ever get well. I have not given up trying, but I just don’t know.
And sometimes, like when the Cowden’s syndrome seems to be at play for a bizarre sudden overgrowth of the gums, and the fitting of a crown becomes oral surgery along the way, or when the girl falls miles away and breaks her wrist, or when the HVAC fails with an open-ended repair bill, or when the husband’s company closes, and the list keeps going, and everything changes, I get totally overwhelmed. And I fall behind on Cowden’s things and “regular” things. I kid my daughter that she is allergic to change. I am sure it is something she got from me, besides a faulty PTEN gene and wild curly hair.
I want to take a walk.
But instead, I sit. In the middle of the storm. I sit cold and soaking wet and cranky and lost. And I long for a release.
But, inevitably someone sits beside me. Someone I dearly love. And they hold my hand and give me a hug, and they just sit. And slowly, out of the corner of the sky comes the tiniest ray of sun. And before I know it, there are birds and a rainbow. And being wet doesn’t feel so messy or lonely anymore. And as the sun starts to warm my body and dry my clothes, I find the strength to stand up and move forward. It’s not dancing, but it is moving. Even if it is ever so slowly.
I reach out and hug my husband, and my daughter. And I remember my second favorite release is to nurture my underattended blog.
#beatingcowdens