by Mallory Casperson, Living with Cancer
Running Lacuna Loft is my full time job. Lacuna Loft is a non-profit organization that seeks to empower young adult cancer patients, survivors, and caregivers by providing psychosocial and lifestyle support. It takes more than 40 hours a week and it is a path that I have chosen for myself, or one that has chosen me, depending on exactly how you look at it.
Lacuna Loft was born out of fire. Lacuna Loft was born from my mother’s death from cancer, from my time spent caregiving for her, from my own cancer diagnosis, from the subsequent lack of support at work and feelings of isolation, and from the empowerment I felt after I met another young adult cancer survivor. Processing what I have experienced and learning to be a survivor has often become public information on the webpages of LacunaLoft.org. I tell my stories to help end isolation and I run Lacuna Loft to provide an outlet for others to tell their stories. I believe that together we can learn to live vibrantly in a new normal; that we can learn to care for one another and for ourselves.
Some days Lacuna Loft gives me so much more than I could ever return. I write a piece that opens the door to somewhere new and I experience relief beyond measure. I read something from a contributor that validates emotions found deep within me and I reconnect that much more to the world around me. Other days, Lacuna Loft takes more than I have. I experience my mother’s death over and over as I grieve with another survivor or caregiver. I lay in wait, nostalgically lamenting, sometimes to the point of anger, the lack of psychosocial support that I had in the depths of such a difficult time.
Organizations focused on cancer care make a caregiver out of each of the contributors and participants. While reading an article or watching a video, we attempt to hold a piece of another person’s story while also holding our own. We juggle pieces of very complicated puzzles. Sometimes we find that our own puzzle fits together more precisely afterwards, and sometimes we find that we’ve misplaced a piece entirely and must search under the rug again. In either case, we are nurtured to refocus and realign that which we need, that which we expect, and that which we can give. This is caregiving.
Being a part of Lacuna Loft pushes me, much like being a caregiver did. I’ve learned to take what happens in stride and re-adjust when necessary. I’ve learned that processing what cancer costs us, emotionally and physically, takes time and patience. I’ve learned that I can feel deeply about what cancer has cost another person; that this can have an impact on my day and my life. I’ve also learned that sometimes I need a break. If I spend a morning considering infertility or death and dying, to name a few of the heavier topics, I usually need an afternoon away to rekindle and reignite. I often test the line between when I can give and when I need to take.
Our stories make caregivers of us all. Tell your story, knowing that it comes at the price of emotional transparency and vulnerability. Know that we will hold it with love and with care. Living another’s story, in written word, video, or physical presence, comes at the same price. Know that it will seep into your bones and change who you are. We have an impact on each other and the price of sharing our stories makes caregivers of us all.
Mallory is the Founder and CEO of Lacuna Loft, a 501(c)3 registered nonprofit organization featuring lifestyle and psychosocial support for young adult cancer and long term illness patients, survivors, and caregivers, found at LacunaLoft.org. She served as one of the primary caregivers for her mother undergoing treatments for a brain tumor just months before receiving her own diagnosis of Hodgkin’s Lymphoma. She is an ex-Rocket Scientist who is passionate about helping people find the resources they need in order to thrive. Launched in March 2014, Lacuna Loft is her labor of love to the young adult cancer community. She is thrilled to grow and expand Lacuna Loft for young adult cancer survivors everywhere!