“In some way, it is like I have this secret, that people don’t know what I have been going through.” Nestled beside the woodstove, dogs across her lap, Shannon reflects on the two things that have unexpectedly turned her life sideways.
“You know my kidneys are three centimeters smaller than a football?” I am about to google the average size of a kidney when Shannon says, “normal is the size of a fist.” We hold hands and don’t speak. Not having words has become eerie and familiar.
“Some people call them their ‘twins.’ Most people with kindies my size look like they are pregnant.” You would never know by looking at her. Shannon looks just like Shannon. A deep brown gaze surrounded by locks and ringlets of jet black, cream skin, and a blushing smile.
“They are sitting way back in there, it hurts my lower back, it’s one of the reasons it’s difficult for me to breathe.”
The reasons are adding up, the secret is getting old. “I have been grappling with the reality that I have a progressive disease that doesn’t have a cure.” So Shannon is going for help, from the best. Tomorrow Shannon and Fernie (her little Catahoula-Shepard co-pilot) will fly six hours, Anchorage to Minneapolis, then on to Rochester where she will meet with her mother and prepare for a week of hard work. The Mayo Clinic is ranked the best hospital in the country, and the world, to address polycystic kidney disease.
“Going to the Mayo means a comprehensive evaluation and treatment plan, and having the opportunity to meet with a medical team that specializes in this disease. My appointment is on the nineteenth floor!”
This CaringBridge is a place for you to be part of Shannon’s story and to watch as it unfolds. “I imagine updating it when I have the energy and new information.”
“I want people to feel informed. There is an image people have of my life here in Alaska, and those images are accurate, but there is a whole different truth, that is what I am experiencing in my body.”
“I don’t need to be bombarded by suggestions or recommendations about what I ought to be doing and I also don’t want people to pity me.”
When asked what people can do to help, Shannon is thoughtfully clear. “I would welcome people sharing kind thoughts for me or about me, that would keep my spirits lifted and help me feel less alone.”
We invite you to keep connected and remain part of the powerful and brilliant community Shannon has created with her love and her care. Thank you.