Walking into a New Reality
Chronic disease egotistically positions itself within the confines of our unsuspecting family, almost like its own entity, sorely undesirable yet begrudgingly accepted. We pushed against the reality of its presence, aching for the ability to revert to the vision we had prior to its existence. But, once it enters there is no future in which it does not exist. We slowly consent to its role in our family, part of the dynamics that have no manipulability. We learn that acceptance is our only option, that in order to persevere we need to align ourselves with this demon and find a place in which our identity matches what it demands. We become CF, in order to fight it.
Our days, are like a warrior dance, cystic fibrosis the center fire, we circle round and round. The first few years, this is so uniquely abnormal that it is an immense struggle to explain our lives to anyone, but it slowly becomes our reality. We choose happiness amidst sorrow, we commit to the greatest dedication to slow disease progression and we allow CF in.
Our community has been poised at the ready for decades as new therapies and treatments are dangled in front of our hearts. We hold ourselves in a place of cautious optimism. More often than not therapies do not come to fruition and we lose hope and we lose friends. This time things feel different. Cautious optimism is turning to hope and anticipation. We bind together as a community in a new way. But a warning still rings quietly in the background. Are we really ready for this? Do we understand the gravity of this transformation? What will happen to this allied community we have created and how do we hold space for those left behind? This ability to fix the unfixable, do we have the resources to handle this emotional collision? I question this from a place of honest conflict in our own lives.
One morning in the depths of winter, I awoke with stillness, realizing in the supervening moments that my first thought was not CF. My prevailing emotions since diagnosis had become chronic low-grade anxiety, fear and preparation for loss. This was novel, inconceivable and I really wasn’t prepared for my own sense of internal inharmoniousness. To protect myself, I rarely allowed myself to imagine this moment, while I could not possibly feel more joyous, there was something else there. My head was in conflict with my heart. How could I possibly mourn the loss of chronic disease, when every prayer, hope and wish upon a star was for my daughter to be rid of this invader. I sit with my thoughts and realize that if Maylie presents as her peers, I no longer know what my role is in her life. My job was clear from the start, I was to do everything in my power to make sure she survived, my job was to empower her to be confident in her diagnosis, my job was to watch her become a role model for the next generation of kids living with CF. Those roles now seem frivolous and unnecessary. I felt blanketed in falsities, who am I without CF?
I have always allowed Maylie to be my guide in CF and despite her new vigor for life, there was a disquiet that clouded her as well. Prodding dialogue proved that she was also conflicted on how to present in a world where she didn’t feel aligned with who she had always been, she was “Maylie with CF.” She had grown deep affection for her time alone in the hospital with me, she felt immense gratitude for the friendships that she had developed with the CF team and hospitals staff whom became her light in many times of darkness and it is hard to leave behind the constant inquisition from friends and acquaintances alike, showing their honor of her plight.
We struggled with this loss of identity and core purpose, we struggled with our place in the community and we eventually came to the mutual agreement that despite our original lack of equanimity, this new life was the preeminent. Our lives are richer than we could have imagined, and all the time spent staying one step ahead of disease progression is now spent on living.
I hope that each individual following behind us has nothing but richness, but if there is a hesitation, I hope that you honor the immensity of this transition. Realizing the gravity of change, give yourself time to find your new place in this new light.