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Special Needs Planning Newsletter: An Open Letter to Ellen DeGeneres

Chambliss Law Firm Monthly Editorial – August 2016
08.01.2016

An Open Letter to Ellen DeGeneres

by Amy Boulware, Elder Care Planning Manager, (LAP MSW)

Dear Ellen, 
 
Yesterday afternoon, my family and I went to see “Finding Dory” as a Father’s Day activity. Our multigenerational viewing party ranged from 20 to 80 years old, with my husband and I being smack dab in the middle – in our 50s. Most of the families in the packed theater had children much younger than mine, but I am certain there were none that were as deeply moved. You see, we really connected with Dory's story in a profound way. I probably need to explain.
 
Four years ago on August 24, 2012, our lives changed forever. On that day, our 16-year-old daughter Hannah went to school just as she did every other day. As her dad dropped her off in front of school, she blew him a kiss, told him she loved him, and off she bounced into the building. Little did we know that would be the last time we ever saw, who we now call, the "Old Hannah.” 
 
Early that afternoon, I received a very strange phone call from her. When I picked up the phone, I said, "Hi, Hannah. What's up?"– thinking to myself that it was not a normal time for her to be calling me. She answered in a monotone voice, "I don’t know." I said, "Hannah, you sound funny. What's wrong?" Again she answered in the monotone voice, "I don't know.” Now I was getting really worried. I had never had a phone call like this before and didn't know what to think. Instinctively I said, "Where are you?" in hopes that I could get my mind around what was happening. She said, "outside," and then I heard the phone drop and several crashes before it went dead.
 
I couldn't imagine what had just happened. My mind was racing when I tried dialing her back. The phone rang and then went to her cheery voicemail. I immediately tried calling the school, and at the same time, the principal was calling me. I answered to hear her say, "Hannah has fallen down the stairs, is bleeding profusely, and is unconscious." I heard myself screaming into the phone, “Something was wrong with her before she fell! She wasn't right! Please tell the paramedics she wasn't normal!” Of course, the principal had no idea I had talked to Hannah just seconds before she had a full grand mal seizure, passed out, and fell down a concrete flight of stairs. When Hannah arrived at the hospital, she was unable to tell the doctors her name, age, or where she went to school. In an effort to establish her cognitive functioning, they asked her to look at me and tell them who I was. The last thing Hannah said before slipping into a coma was, "That's my mommy, and she loves me, loves me, loves me.” These were words she heard me say every day for her 16 years of life. She didn't know who she was, but she knew who I was and that I loved her with all my heart. Those words sustained me through many sleepless nights. 
 
Earlier that day Hannah experienced what we now know as a complex partial seizure, but her friends who witnessed it only thought she was being silly Hannah. This would not be out of the ordinary because Hannah was always doing something that made her stand out from the others! For example, when she was playing in gym class, she flapped her arms in the air like a bird instead of doing jumping jacks, as was the direction. 
 
The complex partial seizure Hannah experienced changes a person's level of consciousness. The person, who usually stares into space, may appear awake but cannot respond to anything or anyone around him or her. The seizure may cause involuntary movements called automatisms, such as lip-smacking, chewing, hand-wringing, picking, and swallowing. 
 
That was the beginning of our journey of embracing her traumatic brain injury. I say journey because it has, in fact, been a journey– just like Dory's journey. Dory and her parents understand that she is different, and so they teach her strategies for coping with her cognitive impairment– in much the same way that my husband and I have worked with Hannah. Of course, in the movie, we don’t know exactly why Dory has short-term memory loss, but our family immediately associated it with a brain injury, which can often be misunderstood and hard to explain.
 
I applaud you and Pixar for your willingness to embrace Dory for her uniqueness and to highlight that her differences are what make her special. "New Hannah" has learned how to cope with the changes in her brain. She has an upbeat philosophy just like Dory. She tells her friends and family that she only fell down the stairs one day in her whole life, and she is not going to let it define her. Despite the impairment, both Dory and Hannah remain optimistic about the future. Hannah's persistence has allowed her to graduate high school with her class, be on the dean's list in college, and pursue her plans to one day be a speech and language pathologist. Her hope is to be able to help others with brain injuries as her therapists helped her.
 
As is true with Dory, there have been setbacks and struggles. Hannah still deals with cognitive fatigue, processing difficulties, and at times, she is fearful of what is to come. While Dory's mantra is "just keep swimming,” Hannah's mantra is "seize the day," and sometimes she says giggling, "I even seize during the day!"
 
Thank you, Ellen, for showcasing a character with a hidden disability. You helped movie viewers see that not all disabilities can be easily recognized and having a disability may make you different, but that isn't a bad thing. Dory is endearing, lovable, and funny, and she happens to have short-term memory loss. Wouldn't it be wonderful if we lived in a society where all people with disabilities could be embraced for their uniqueness and having a disability was just one part of that?   
 
With warm regards,
 
Amy Boulware
 

If you have any questions about special needs planning, please reach out to Amy or a member of the Special Needs Planning Team. We are just a call or email away.