Q: I found out about your project on kickstarter.com. Can you briefly talk about your experience with kickstarter and how it affected your process?
A: Kickstarter.com enabled me to raise funds in order to complete and publish my book, The Gene Guillotine, much faster than my waitress salary allowed. Fully funded, I’m close to publication and am currently checking the formatting.
Publicity was the main reason I used Kickstarter. I had been secretive for years due to the genetic component of my memoir. The big announcement forced me out of hiding, revealing my secret to family, friends, co-workers and acquaintances to tell them I had written a early-onset Alzheimer’s memoir (also called young-onset Alzheimer’s).
People who donate money to a kickstarter project receive gifts in exchange. The majority of the donations were from people I know, and it is an honor to feel their support. I am obligated to finish the book that will be gifted to my kickstarter donors. Now, no matter my level of fear, there is no turning back.
Q: Many people find themselves in the position of facing family members with a disease that is known to be genetic. What compelled you to write about it?
A: The onslaught of the following situations compelled me to write about genetic disease as well as the loneliness I experienced and lack of resources that were available. I was in high school when my mom’s intangible personality changes and memory slips began. My aunt had symptoms too. Then, my father died who was my Mom’s main caregiver. Before his death I felt like I had already lost Mom, but after, Mom and I reconnected. Physically alive, touch became important and I began to record many of our interactions.
Then, years after my relatives first gave blood to a research study, a research doctor located the rare genetic mutation that was causing previously inexplicable memory problems in our family. At the time of this announcement, my mother and aunt were in care facilities and my uncle was showing symptoms. It was after this discovery, realizing the rarity of genetically inherited early-onset Alzheimer’s, that I learned to appreciate and value the time I had spent journaling. I began to reread my scrawled experiences from the journals that were stored in a boxy tweed and leather suitcase.
Q: What did you hope to accomplish with the writing of this book?
A: When I found out about the genetic link in our family, Nancy Wexler’s case studies on Huntington’s disease were one of the few resources of information on genetic disease and genetic testing. Despite being a totally different disease, it helped normalize my emotional and psychological experience. My hope is that those who read The Gene Guillotine will feel connected and not so alone as they are going through their process with genetic disease or a parent having Alzheimer’s. I also hope it will be a spring-board for others to share their own experience and that it will serve as a baseline to educate supportive friends who are trying to comprehend the implications of genetic disease. I believe it will increase society’s awareness, understanding, and etiquette of genetic disease and genetic testing. Finding out one’s genetic status and probable future is so new, the personal implications are not understood. It’s a tabloid’s fantasy and people blurt out, “Do you know your gene status? Are you going to find out?” without realizing that is inappropriate and wrought with angst, sadness, and fear.
Q: What made you decide to self-publish rather than seek out publishing via the traditional route?
A: Originally pursuing traditional publishing, I sent The Gene Guillotine manuscript to four different publishers. Then, I waited. I didn’t write, I hoped. I didn’t edit, I wondered. The act of sharing it with little to no feedback wiped out forward progress for months. I was terrified—I hadn’t studied English or writing in college. I didn’t plan to write a book, I’ve had to learn each step of the way.
My writing coach Lisa Alpine taught classes in self-publishing and I decided to embrace this path to get the book in the hands of people who may find it useful. When it is available, I hope those who need it will find it on Amazon and it will spread by word-of-mouth. I’m not opposed to traditional publishing, but I have a tender soul. I’ve thought about sending it out again, but every time it derails the actual process of moving forward on the book.
Q: Was there anything unexpected that resulted from writing your memoir? Did anything arise that surprised you?
A: My biggest surprise was when Felipe Barral, a producer for CNN Espanol, asked me to be part of a recent “Untold Stories” documentary called “Filling The Blank”. Felipe found me through a researcher, Dr. Ken Kosik, who knew I was working on a memoir about Alzheimer’s disease.
I’m also surprised by how long it is taking for me to write and publish this book. It is still not finished. This is the scariest and most revealing thing I have ever done in my life. I don’t think I would choose to do it if I didn’t have hope it will help others.
On a personal level, it still surprises me that I can’t read the chapter of my Dad’s death without crying.
Q: Did you share your work with anyone while you were writing? Why or why not?
A: In the first year, I realized that talking about my writing was too difficult on my ego. I would interpret everything as a criticism, from someone looking at their watch to a raised brow. I realized I could talk about writing, which wasted emotional energy, or I could write, but I couldn’t do both. I committed to keep my mouth shut. People knew I was working on a writing project, but despite their curiosity, I would not answer the usual questions of fiction/nonfiction/book/magazine articles/short story collection/poetry.
In the beginning, I didn’t share the written words with anyone. I lacked traditional training in writing and was afraid because our Alzheimer’s disease is genetic and I didn’t want to be labeled or watched. Pen names floated through my mind. Three years into writing, I needed direction and found my writing coach, Lisa Alpine. Originally, the book was organized by topics like finances, living wills, independence, death and genetics but it didn’t have passion. Lisa pledged to secrecy and then helped me transform the journals into snap-shot chapters.
The eight months that included filming the documentary with CNN, putting my project on Kickstarter, emailing my contacts, getting a Facebook and Twitter account, followed by the airing of the CNN’s documentary, eliminated all possibility of hiding.
Q: Are you finished with the topic or is there more to come?
A: The topic of genetically inherited Alzheimer’s disease will never be finished until there is a cure or preventative treatment. It haunts me, as it rips through my family. Will I continue to write for public consumption? I don’t know. It is draining to revisit the pain in order to write. I believe there is more, but first I must finish publishing this book and figure out how to live in spite of the hovering guillotine.
After graduating from St. Lawrence University, Kate Preskenis‘s life took a drastic turn from pursuing social and environmental justice to mitigating the chaotic world of her mother’s genetically inherited Alzheimer’s disease, to ultimately grappling with her own genetic status. Journaling since she could form sentences, Kate charted her emotions, relationships, and experiences. Imbedded in these diaries are her mother’s first Alzheimer’s symptoms of unexplained behavior and emotional oddities, continuing to her mother’s last breath. The early death of her parents combined with the innovative capability of gene testing led Kate to value and share this unique documented history. Residing in southern Oregon, Kate waits tables at a fine-dining restaurant that serves organic food. Writing, working out, going to church, dancing and connecting with cherished family and friends keeps her body strong, spirit light and heart open. www.katepreskenis.com