Her big smile greeted me on the FB screen early in the morning. She was so excited to tell me something, that I barely had time to say hello.
“What’s going on?” I asked, anticipating a tidbit of gossip about someone at the manor.
“More book!” She said, grinning from ear to ear.
I remembered we had chatted the day before about my idea of writing about our life together on the farm. But, I had not expected such a quick and enthusiastic response.
“You want to share something with me for the book,” I asked, hoping to gently tease out what she meant.
“More for book!”
“Ok,” I said.
She begins. “Barn! Watch dad milk cows!” She struggles to string a sentence together, but persists and succeeds.
I repeat her words back slowly to confirm I understood her correctly.
“So, you want to tell me about dad milking the cows?”
“Yes, me and dad!” There was no missing her excitement to get on with the story.
“Alrighty, give me a second,” I say.
“Let me grab a pencil and notebook to write down what you’re saying.” I hoped to give her a sense that this was going to be serious business.
Who was I kidding?
Was I trying to convince her?
Or was this simply a ruse in my mind to convince me that the time spent on this project of ours, away from the other projects I love, is important and worth the time investment?
Her story should be told, that is for sure. But without a voice of her own, others are needed to tell it.
Don’t misunderstand me here – she indeed has a voice and can speak. But in order to hear what she is saying, patience on the part of the listener is necessary. Familiarity with her facial expressions and body language on the part of the listener gives access to the meaning of her words beyond the articulated words.
Our lives overlapped significantly in our childhood home. Each night we slept together.
“Leg round me!” Her voice begging, commanding, me to fill my role to keep her safe.
She would insist and each night I slept with one leg wrapped around her body to help her sleep. Sharing a bed with her – from my toddler-years until college – gave me intimate insight into the intricacies and nuances of her speech patterns and communication.
Now, years later, as we embark on telling our stories, I caution myself. I must never forget that the perceptions and memories of the moments in our lives are uniquely our own.
Even though she has limited abilities to communicate verbally what has transpired in the past, and even though she requires assistance to tell her story, her interpretations of those events and experiences are entirely her own.
This is where it becomes tricky.
Whose memory is whose? Have we inadvertently influenced each other’s memory of the events?
This is where I come to terms with the imbalance in our relationship.
I’m prone to lose my own self while providing care for another. I’ve been conditioned to be a caretaker from birth. Some have even claimed care for my sister is my God-ordained role in life. She, too then – as one wholly dependent upon another for her every basic need – is prone to live vicariously through me, the caregiver.
Nancy Eiesland describes this phenomenon rather well in her book, The Disabled God. In the book she tells of an ”intimate relationship,” between two sisters. Diane, the older born “without lower limbs and with above-elbow upper extremity stumps,” and Debbie, her “able-bodied,” younger sister. 1 The following quote is especially insightful.
“It is true that there is a Diane within this Diane who can dance which enabled me to teach my younger sister Debbie, but there’s another reason I could coach her so well. It’s hard to explain. Ever since Deb could walk she was taking care of me. I saw her body move from childhood’s awkwardness to adult gracefulness and strength. but no only did I see this, I felt her movements. In a sense, part of her body was mine too. So since I knew how her body moved, I could coach her in dancing. Do you understand any of this?” (Italics are mine). 2
Eiesland hits the nail on the head and puts into words what I’ve sensed from my childhood, but lacked the language to describe.
I’ve come to realize now, that this has manifested itself in our relationship for many years. I became her hands when we baked or worked on craft projects. I became her feet when we went shopping and for walks. It was easy for her to live vicariously – not only through my body – but through my heart and soul.
She writes, “To suggest that she embodies not only her own, but her sister’s body as well, does not fit the “normal” understanding of the world and may sound pathological to some.” Eiesland demonstrates that Diane’s “perception of her sister’s body [became] a resource for constructing her own body image.” 3
Yes, that is perhaps the best way to understand my sister and my relationship. I have no doubt that the reverse is also possible – the abled one identifying as the disabled one.
My husband and children, who know me well, are aware of this propensity to lose myself – to go all-in, to get off-kilter – in caring for her. So, I’m deeply grateful for their gentle, and oft repeated reminders – to guard myself, my heart, my emotion – as I work on this project. I do not want to repeat the mistake my parent’s made – that of integrating the two of us into one very unhealthy, symbiotic mess.
We are two individuals, and I must not lose myself.
My identity is my own. It is a life full and overflowing with the blessings of marriage, ministry, raising children, running a business, pursuing education, and traveling internationally. These experiences are my own and have shaped who I am today.
Her life, on the other hand, though just as blessed, is quite different from mine – years spent in an institution, in group homes, in independent housing, and now in a lovely manor where her thriving is encouraged. These have shaped who she has become.
And that is okay. The guilt I’ve carried of being unable to do more – to fix everything that was broken from our past, to create a normal life for her – is an unfounded guilt.
It took me nearly four decades to disentangle myself from my sister’s disability. A chapter in a popular women’s Bible study book convinced me I had allowed others to place on me a burden I was incapable of carrying on my own. Only then did I have the courage to let go and place her into the hands of other caregivers. [efn/note] See chapter 4, “The Cure” in Having a Mary Heart in a Martha World, by Joanna Weaver, published by Waterbrook Press in 2000, 2002. [/efn_note]
It is a story of two sisters – lives intertwined since birth – who have taken different paths. By disentangling from the crippling doctrines of our childhood we both, in very different ways, found our own way to wholeness.
Ours is a story of God’s grace in our lives. It is a story that began on a farm.
Her exuberance to share this memory – about milking cows with her father in the barn – is a reminder, an exhortation really!
Joy can be found in the mundane and smelly chore of milking cows!!