11 May - Loss of Sense of Loss

Thanks to Facebook, I was contacted this week by a friend I had not spoken to in a few years. She and I weren't particularly close, but from what I recalled, she was always a sweet, positive soul. Always offered a smile or energetic sentiment to everyone she passed in those high school halls. Jillian encouraged me to come see her as Sarah in the production "Children of a Lesser God." I was not familiar with this storyline but recall seeing trailers of the movie when I was younger. Jillian explained to me that she does not speak, but uses sign language to communicate her role.

I thought about that. To actually be without a sense. And how being without one raises one's ability to finetune and crispen his other senses. Out of need, not choice. If I could choose to be without a sense, which would it be? Touch, taste and smell were out. So which of sight or hearing? I wanted to be without one for a day, just to be somewhat aware of what others go through. I knew I still had to drive and function somewhat productively through the following day, so I chose the loss of hearing. I plugged my ears and told those around me to pretend I could not hear. When addressing me, I asked they tap me or talk to my face. It felt a bit like scuba diving at first...that slight period of apprehension where I can hear my own breathing, feeling alone, unaware of my periphery and seeing myself dropping farther from the surface -- a visual that cutting myself off into an unknown world is a choice.

My first public place was kickboxing. Through the muffled instruction, I used touch and sight to feel the beat and follow movement through class. And, of course, the one day I try to tune out, is the one day strangers are a bit friendlier than usual, and also the day she pairs us up for partner abdominals. Really? I found myself asking my new partner to repeat herself while I studied the movements of her lips. I could tell she felt that warmth of an immediate connection in a new friend because she kept turning to make comments and jokes in the following class. I felt like Seinfeld's Elaine Benes giving polite yes nods to the "Low Talker." Afterwards, I subconsciously was trying to avoid eye contact. With anyone.

I headed to Panera, the library and other public places, where I realized a few more things. We are aware of peripheral vision, but not so much peripheral hearing. I didn't hear someone behind me trying to move past or say "excuse me." I felt the need to be constantly looking around to make myself aware, in general. It was an uneasy feeling...perhaps a loss of control. However, it was nice to detach myself from needless chatter, like Charlie Brown's teacher two tables down speaking loudly on his cell phone. Lastly, I learned I cannot have a conversation while driving. And as many times as I would remind the person that I cannot hear, she either talks louder, or he stops talking. Then picks up where he left off, a few seconds later.

I was hoping perhaps this "research" would help me become a bit more invested in the play. Utilizing nothing but one prop, an easel, Soulstice Theatre had accomplished an incredible task. The whole story was told intimately through minimal distraction of a set, just the dialogue and movements of the seven characters. Jillian was incredible. Her feistiness, glee, frustration, anger and intelligence were felt without sound. The climactic scene where she explodes and "speaks" was so moving that I forgot that she was in fact a "hearing" person.

It did not dawn on me then, but I realized a few days later that Jillian has had her own personal trials. Graduating Magna Cum Laude from Harvard and heading down a path of law, life drastically changed course to being a mother of two developmentally challenged daughters. Her 5-year-old Sydney was born healthy and contracted a virus that rendered her fighting for her life and on feeding tubes. The brain damage associated with this infection has left her with cerebral palsy. Her 3-year-old Zoe has autism.

Jillian shared that family and faith pulled her through. "I'd not been very active in my faith prior to this, but when your back is against the wall and you are begging for the life of your child, God is the only place to turn. And I did. I stood in the sleeping room at Children's and begged God to spare Sydney. I told him I would take her in whatever form He saw fit to let me have her, just please don't take her away. A family friend of ours, Bill Tucker, had written a book about miracles and he hangs his hat on Mark 11:24 which basically says 'whatever you ask for in prayer, believe that you have received it, and it will be yours.' So, I asked God to spare Sydney and believed that He would. And He did. The first of our many, many miracles. With Zoe, we were already well into the throws of Sydney's recovery journey, and I remember having a very teary conversation with my mom about the possibility of Zoe being autistic. I remember asking how on earth I was going to manage having two kids with such different special needs. But, it's just our version of normal now.... No matter how many times I may second guess choices I've made in my life, they have all brought me to the point where those two little angels call me Mommy, and that makes the choices all seem to be the right ones."

I asked this humble friend how life experience prepared her for her role as Sarah and vice versa. "It was really quite emotional to have the tables turned on me and portray the one with the needs. I'm sure now that I have this perspective, I will think carefully about how I 'protect' my girls from challenges and how I fight to have their needs met in school or therapy or wherever. I look forward to them both being able to express their wishes and desires for themselves in a way Sarah and her mother never could."

Jillian learned sign language in approximately 10 weeks. She and her opposite lead met with two deaf coaches. One can hear and read lips; the other is completely deaf. They taught aspects of Deaf culture that were crucial to the production, i.e. what "speech" should sound like, how not to lock her jaw in an effort not to move her mouth; how to act without a voice and with preoccupied hands; how to portray Sarah's vulnerability and not just cynicism and bitter facade.

I finally asked why Jillian thinks this fell in her lap at this time in her life, she answered, "God is good. And Char [the artistic director] was insane! It was just one of those things the universe deemed was meant to be. I am forever grateful in SO many ways. I've never had a more challenging and fulfilling role. I've never worked with such a fantastic leading man. I've never been more proud of a production ever. Life has thrown me enough curveballs along the way, I should be able to land a good swing every now and then. I think God decided it was time for me to hit one out of the ballpark. It's given me a wonderful sense of accomplishment which will keep me going, keep Mommy recharged so she can keep giving 110% to our family and our world. That's valuable currency."

Partial proceeds from this production were donated to Center for the Deaf and Hard of Hearing. To make a donation and for more information, please visit http://www.cdhh.org/.

To find out more about the non-profit Soulstice Theatre, please see http://www.soulsticetheatre.org/.

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