Alyssa Zeigler's Story
Meet Alyssa Zeigler, author of the blog "Learning to Live by Defying the Odds", an ongoing tale of growing up and living with Gardner's Syndrome (GS), a specific form of Familial Adenomatous Polyposis. Her topic of choice...well that's the amazing part...
You won't see discussion about life during chemotherapy or post-cancer. Alyssa is a fourth generation GS patient, and was screened and diagnosed eight years ago before cancer ever had a chance to take root.
No posts about life with a J-pouch, BCIR, or an ileostomy. She doesn't know what that's like. When she was diagnosed, she had ~ 300 polyps. Seven years later, her doctor's treatment regimen has kept her GS in 'remission' - today she is living polyp-free and colon-intact.
The primary manifestation of GS in Alyssa are osteomas, mostly peppering the top of her head. Over the last few years, Alyssa has had four operations on her face to remove an
osteoma (bone growth) from her nose, and three skin cysts from her face; but you won't find much about that on her blog. Granted she does find them 'kinda annoying sometimes."
Again that's what is amazing about her outlook on life. She writes about how Gardner's Syndrome has taught her to live. She is focused on finding the positive ways it has affected her life.
Wait....what?!? The positive ways? Perhaps an example is in order.
Alyssa's father was diagnosed with Gardner's when she was three. For the next nine years, Alyssa remembers her father sick much of the time, in and out of the hospital frequently. He went under the knife for several surgeries - first to construct a J-pouch, then several more to correct complications with the J-pouch, and a final operation to create an ileostomy.
During this time, Alyssa's grandparents frequently stepped in to care for her and her siblings. Alyssa could have negatively internalized everything, realizing that the same fate may lie ahead for her - but she didn’t. Many people claim to be 'glass half full' types, but when the rubber hits the road, how many actually walk the walk? Alyssa does! Looking back on that time, Alyssa maintains that the end result of this period of stress and sickness was a deepened relationship and connection to her grandparents, for which she is very thankful. Something she might not have had the opportunity to develop otherwise.
Alyssa first started writing a bit over a year ago, shortly after F.A.P. claimed the life of her aunt. At first she started writing out of frustration. She was scared. It began with poetry. A way to deal with emotional baggage. Eventually, poetry became a blog. A way to reflect. And eventually the scope of her writing transitioned.
"Sometimes I have good and bad days where I have less positive thoughts. But I have many things to be thankful for, and now I hardly have bad days anymore." Now she writes to make meaning out her life and to give thanks for what she has and what is coming her way. She is in the late stages of self-publishing an e-book based on her blog.
"My hope is that my story will help someone else through a tough time. Even though times can be tough, things will get better. You just have to have faith."
Speaking with Alyssa, you definitely get a sense that some ageless wisdom has been imbued into this young person. Perhaps it comes from faith. Maybe from good upbringing.
So what does the future hold for Alyssa? She is inspired to go into oncological nursing.
"I hope to work with children who are battling cancer. My dream is to work at Children’s Hospital. I hope that my story helps others. At the beginning of this experience, I told myself I wasn’t going to let this obstacle define me. My disease hasn’t defined me, I’ve defined it."