WellStone thanks Dr. Annie Saylor, SimTech CEO and WellStone Board Member, for contributing this piece. Saylor writes about her sister, her sister’s illness, and their special relationship. Nannie Saylor Adams was diagnosed with schizophrenia at 22. Despite several rough years early on, Nannie eventually got on the right treatment regimen. Saylor lost her sister just over two years ago. Nannie left behind two children, and five beautiful grandchildren. In memory of Nannie and with Saylor’s permission, we include her story here.
“When I was in fifth grade and my sister Nannie in third, my teacher decided to do a school play. In our two-room school of eight grades with roughly five students per grade, assembling a cast meant involving the entire school. We were excited because nothing like this had ever been done at our school.
The chosen play was from Lewis Carroll’s “Alice’s Adventures in Wonderland” and “Through the Looking-Glass”. With her blonde hair and small, thin body, Nannie was ideal to play the role ofAlice. My teacher chose her, and designated me to play the part of a flower — maybe a rose, I don’t remember. What I do remember is the jealousy I felt of Nannie’s starring role. I had a crush on my teacher; my hair was dark and my body chunky; and I was just entering puberty.
The play was a musical with a song about Alice; one that Tweedledee and Tweedledum sang; etc. The day of the event, the room was packed with parents and other relatives. The sliding partition between the two school rooms was raised in order to accommodate everyone. The scenery included a mock rabbit hole made of chairs lying on their sides and covered by cloth. Nannie was a star.
To this day, I remember snatches of the songs from this play. It was a significant event in our lives. On a recent trip to visit my parents and Nannie, we began reminiscing about it. I reminded Nannie of how jealous I had been; of how pretty she was and of her moment in the limelight. Together, we sang:
‘Alice in Wonderland
Dear Little Alice so True
Curious little girl all dressed in blue
With your tale of woe
And your adventures too
Alice in Wonderland,
We love you.’
We sang the other songs we remembered from the play. It was a special moment between sisters; with someone who shares my memories of childhood. We hugged and expressed our love for each other. Nannie’s eyes were bright and a smile was on her face as we remembered.
In her early twenties, my sister fell into a rabbit hole of sorts. Into an anti-Wonderland filled with paranoia, depression, obsession and compulsion. She has journeyed many years in this land and felt pain that I cannot begin to fathom. Long months in the state hospital, numerous appearances in court for re-hospitalizations, stabilization followed by relapse followed by stabilization. An endless cycle. The land she has traveled has been filled with caring people; rigid, inflexible people; and well-meaning people who did her harm because they didn’t comprehend. The illogic of the system has been at times as strange as the world Lewis Carroll created for Alice to explore. Sometimes it has seemed that Tweedledee and Tweedledum are in charge:
‘We’re Tweedledee
And Tweedledum
Bumpty-Boppity-Boo
We love each other
We love the world
And We know we’re
Going to like you.
All through the day
We laugh, we play
We’re happy, we never feel blue
We’re Tweedledee
And Tweedledu
Bumpty-Boppity-Boo!’
Now Nannie has reached a stability that seems less tenuous than those before. Finally, the right medication combination seems to have been found and the symptoms have lessened. She has been home for well over a year and is attending a community day program. Looking at her now, I see her beginning to recover. In my mind’s eye, she is the frail, pale Alice beginning to emerge from the rabbit hole. She blinks at the bright sunlight because her eyes grew accustomed to the dim light inside the hole. I want to protect her, yet at the same time, I realize that this is a crucial period in determining her future. Our parents are aging rapidly, and establishing a means for Nannie to stay out of the hospital with the community supports she needs is a priority.
Last week I sought out a copy of Lewis Carroll’s works at the big, new bookstore in my city. I have begun re-reading them to see what simple truths might be encapsulated within. Whether what I find provides guidance, merely another perspective on the ironies of life, or simply tweaks my memory on other portions of the play doesn’t really matter.
My sister and I will always share the memories of our childhood moments on stage. I can imagine us as elderly women someday sitting in our rockers on the front porch singing the silly songs from so long ago. Mental illness has not taken away this part of my sister. We have much to share and much to offer each other. I am glad that she is here.”