I’m sitting in the bedroom that I have inhabited for 16 years. The house I moved into has been on my mother’s side of the family for nearing a century. When my great grandfather bought it Syracuse, NY was a dusty, burgeoning city known for producing cutting-edge gears, automobiles, typewriters, and industrial chemicals unknowingly barreling towards the Great Depression.
Much can change in a century, and much has changed in just 16 years. I came to this house that was home to my beloved grandmother for 80 years, shortly after her death. I had debilitating pain that doctors were baffled by. I thought I would stay here shortly, the pain would be sorted out, and my life would proceed as I expected it to. I was 37 years old.
Six months later, under the grinding crush of physical anguish a nurse practitioner exasperatedly declared I had shingles. She had listened to the dismissive nature of the last doctor I had gone to see. By then, I had no idea yet, my life had already begun a hard turn right, when I was sure we were headed forward.
I’ve had three surgeries to my arm and one to my neck. I’ve tried literally everything from Acupuncture to Zen Meditation. People are always well intentioned when they suggest various forms of help I should look into. And I smile, letting them know more about what the journey has been thus far.
I have a much longer list of health complications now. When I was 16 years old I learned I had ulcerative colitis. I’ve been out of remission since 2014.
Two years ago a dear friend from my youth came back into my life after we had lost touch for a few years. When I noticed he had returned to Facebook and looked in his eyes in his profile photo I honestly sensed something was gravely wrong. The sorrow in his eyes, despite a harrowing start to his own life, was something I had never seen in him before.
He had been diagnosed with a highly aggressive and rare form of cancer known as pleomorphic sarcoma. Nearly two years ago the tumor that would likely have killed most people was removed from his left leg.
During previous treatments he nearly died three times from fevers that resulted from the chemo and radiation. He couldn’t brush his teeth because even the most gentle brushing could result in a deadly infection.
The first time a dear friend died I had just turned 27 years old. Patrick was his name, and he took his own life. Everything I thought I knew about life was soaked in black ink when his mother told me over the phone of finding his body hanging in her basement.
For a long time I believed I could have stopped him, had I only returned that one phone call had made to me a few weeks before. I blamed myself, and I hated being in the world without him.
Counseling, over many years, slowly saved me. Putting down alcohol a day at a time since 2005 saved me. The love and light I came to see in my niece’s eyes upon her physically agonized entrance to the world saved me. The love of so many saved me.
My niece and I had lunch recently to celebrate her 20th birthday. You would never have the slightest guess what she lived through the first 7 years of her life. She shines like the purest light and is a source of tremendous inspiration to me. She sees me through the eyes of love that I wish I could see myself through more often. Her joy is contagious and her compassion for others is immense. She is brilliant, quick witted, hilarious, beautiful and someone I know that my grandmother would marvel at. Being her aunt, knowing she trusts me and loves me, means more than any title I could ever earn, more than any money I could ever acquire, more than any accolades anyone could ever bestow upon me.
I find myself at an interesting intersection in time. My friend has made it cancer free to a crucial two year milestone that indicates he has yet again beat terrifying odds.
I have written a novel and am gathering as much courage as I can to find an agent.
I am watching the ongoing tearing apart of the world I once knew and hoped would be my niece’s inheritance.
I believe one of my most important roles in her life is to protect her in any way I possibly can. If I had a child, I would feel the same way I’m certain. I’m creating as much as I can in the years I have on this planet.
In my photography I hope to convey the reverence I have for nature. I hope it might inspire others to do what they are able to do to protect it.
I have been working on a project that will be ready to launch relatively soon. I’m excited to tell a story in a way that I have never been able to before.
In my writing I hope to offer a glimpse into a world that was present when I was younger, that is no longer. I hope that elements of that world are carried on. I remember reading Natalie Goldberg’s novel Banana Rose when Patrick died. The comfort I found in the world she created with her words I needed so desperately.
Healing is messy. Love is messy. Creativity is messy. I recently let myself paint again after a long time of not allowing myself this great release. I had just begun to paint for the first time just as Patrick, a talented young painter, had decided to never allow himself to create again.
I’m preparing to take a trip that I’m not sure my health is up for. I don’t know if I will actually be able to embark this fall or not. If I do, it will be solo, off grid camping through the United States. I have done three similar journeys since 2022. It is a great deal to manage and as each year passes I see my own limitations.
When I lived through a daunting cancer scare at the end of 2015 and into 2016 I made myself silent promises we would see as much as we could with our own eyes. We would smell forest air, we would gaze upon stunning mountain views. So I do what I can, as I can. I bring my sweet dog along with me, and my cute kitty. They both have health issues so I do my best to be sure their health is planned for first and foremost.
Three years ago I thought I was leaving Syracuse in a motorhome. The motorhome had other plans. I can laugh now, but the major complications were anything but funny at the time. It turned out I’ve had more time with my parents in person. My father’s recovery from his own harrowing health journey inspiring to witness up close. My mother’s recovery from breast cancer and knee complications is reassuring as she cares for my father.
Whether I am on the road, or here in this room, I will continue to create things. I will continue my commitment to find joy and practice kindness to others. Gabby Rivera, writer, storyteller, and LGBTQ youth advocate speaks about how a true hero is someone who can "punch portals into other dimensions while also embracing her gentle, goofy, soft side."
She sees that real power is rooted in shared love and spaces where people can show up exactly as they are.
Much of what I do these days is online with others over zoom, or interacting outside. Being immunocompromised and at times exhausted by my medical treatments and managing everyday tasks. I do my best to carry the goofy and all accepting energy of Patrick, who was the first gay man I ever knew, and the protective insight of my anonymous friend who fought through a cancer that by most accounts would have likely taken most people out. He serves as a daily source of inspiration, walking 4 miles per day and practicing martial arts and eating a wholesome diet. Patrick and this friend have inspired characters in my first novel. The late musician and activist Jolie Rickman inspired a character in it as well. I want to show others what the love of friends can look like, how it changed the narrator, how it made her better, and prepared her for what would come.
I should do this thing now that I hate to do. Set a public deadline. When I do this, I’m then accountable if I let fear get in the way. I will contact at least two agents regarding my manuscript for my novel within three weeks of today. It’s currently August 31, 2026. September 21, 2026 is my deadline. Ugh I already hate that. In an ever evolving literary world I am incredibly glad I have emailed myself and others over many years the completed draft revisions while some people attempt to take an AI shortcut.
Okay time to start sorting out which agents would be good to contact. Thanks for reading and supporting my journey this far.