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Lost in My Mind is a stunning memoir describing Kelly Bouldin Darmofal's journey from adolescent girl to special education teacher, wife and mother -- despite severe Traumatic Brain Injury (TBI). Spanning three decades, Kelly's journey is unique in its focus on TBI education in America (or lack thereof). Kelly also abridges her mother's journals to describe forgotten experiences. She continues the narrative in her own humorous, poetic voice, describing a victim's relentless search for success, love, and acceptance -- while combating bureaucratic red tape, aphasia, bilateral hand impairment, and loss of memory. Readers will: Learn why TBI is a "silent illness" for students as well as soldiers and athletes. Discover coping strategies which enable TBI survivors to hope and achieve. Experience what it's like to be a caregiver for someone with TBI. Realize that the majority of teachers are sadly unprepared to teach victims of TBI. Find out how relearning ordinary tasks, like walking, writing, and driving require intense determination. "This peek into the real-life trials and triumphs of a young woman who survives a horrific car crash and struggles to regain academic excellence and meaningful social relationships is a worthwhile read for anyone who needs information, inspiration or escape from the isolation so common after traumatic brain injury." -- Susan H. Connors, President/CEO, Brain Injury Association of America "Kelly Bouldin Darmofal's account is unique, yet widely applicable: she teaches any who have suffered TBI--and all who love, care for, and teach them--insights that are not only novel but revolutionary. The book is not simply worth reading; it is necessary reading for patients, poets, professors, preachers, and teachers." -- Dr. Frank Balch Wood, Professor Emeritus of Neurology-Neuropsychology, Wake Forest School of Medicine
It was October of 1992 and my child had been in a coma for over two weeks, and on that day, she did the most commonplace thing in a teenager's life. She answered the telephone that was attached to her hospital bed. She said... "HEY!" With a feeding tube still down her throat, Kelly spoke her first word. I do not know who was more excited-me, or Dr. McWhorter, who has been quite concerned that Kelly had opened her eyes days ago, but couldn't speak one tiny syllable. Hope! I knew she would talk. My irrepressible motor-mouthed child was not going to remain in a world of silence. I told them she would speak, and she told me with her eyes. She was coming back to us as fast as she could. Dear Lord, it is hard to be patient!
The next day, Kelly's friend Mark Giordano brought us a poem he had written, in which he tried to see through her confused eyes:
Encountered by the mural that haunts her
Disclosed to the accounts of man
Spirited by her love untouched
Exposed to a stupor hidden mutually.
Worthy of details yet not enchanted
The altar is replenished, modifying concern
Allowing her to descend into the age
For she is awake, she is awake.
Mark didn't realize that it wasn't the beauty of his poem that spoke to me. It was his optimism. He believed. He told me the poem "sums up what is going on in her mind and in ours. Her mural is going away." If Mark can believe in her future, so can I.
More Firsts
I couldn't write much at the time Kelly first moved on day three, and first opened her eyes days later. The eleven days she spent in ICU left me paralyzed with fear.
It seemed longer than a week since Kelly's eyelids fluttered and I saw her blue eyes staring at me. A tiny sweet grin spread across her betubed face, the most precious smile in the world. I saw recognition in her eyes and threw my arms around her. She struggled with her arms, and the nurse released her right arm from the restraint. She hugged my neck tightly, and then patted me gently on the back. It was as if she was comforting me and saying, "I'm fine. Don't worry about me!" Naturally the doctors wouldn't agree that she recognized her mother, as patting is reflexive. But a parent knows. Bobby was there, too. Daddy got his hug as well, and perhaps breathed for the first time in a millennium.
Tears of a Father
My husband had not yet cried. He was stoic until he found Britt's letter lodged in our back door. Britt Armfield, a sophomore friend, had not yet been to the hospital, but left us this letter:
Dear Mr. and Mrs. Bouldin,
I write this letter with a certain amount of regret. I regret the fact I do not have the strength to go to see Kelly. Personally, I have gone through two open heart surgeries and a number of minor procedures, and due to that, hospitals frighten me. However, I want you to know, and Kelly to know that I love her very much and I want to see her. I pray for her every night. I pray for you both and for Tyler. I cannot imagine being thrown into the position you are in. I know Kelly is going to be okay. I know you hear that all the time; but from the bottom of my heart, for what it is worth, I want you to hear it from me. I can remember the first time I met Kelly. It was around Christmas two years ago. She had just gotten a makeover. I knew then she was a beautiful girl on the outside and through the past two years, I have come to realize she is just as beautiful on the inside.
We cannot begin to answer why this happened. But God has a strange ways of doing things and there is a reason. You may never realize the reason for this, but there is one. I want you to know that I feel for you deeply. I also want you to know that I am praying for you and I can only begin to tell you how much I hope all of our prayers will be answered. I truly wish God will comfort you and lay his healing hand upon Kelly because that is how I see her now, resting in God's hands, his eyes watching over her day and night, healing her constantly.
In Him, Britt Armfield
PS - After Kelly recovers, please let her know I was thinking of her. It would mean a lot.
"I consider that our present sufferings are not worth comparing with the glory that will be revealed in us."
- Romans 8:18, NIV
My husband handed me this letter in Kelly's hospital room and said, "I finally cried. And it took the words of a teenage boy I don't even know."
Karen Fry
Karen Fry was a 27-year-old mother of two, who resided next door to Kelly on the 7th floor of Brenner's. I am not sure why she had been placed in the children's section of the hospital, but Karen was in a coma much like Kelly's. She also had other injuries that made her prognosis for recovery extremely dim. I don't know if her head injury was open or closed, but I do recall her devoted young husband.
Mr. Fry spoke to me every day from September 28th until October 22nd, when Kelly left Brenner's Hospital for Myers Lake Rehab. He asked my permission to come in and watch Kelly in her various stages of recovery. Mr. Fry wanted to watch as she began to speak, walk with assistance, make a phone call, and attain other firsts. I often looked in on Karen and her poor young husband, as he stared at his comatose wife. He told me how much his children missed their mother. He did not expect her to awaken, but "in case she does, I want to watch Kelly to know what to expect next," he said. He, like me, did not know what came next. Paul Fry often walked with me as I rolled Kelly's wheelchair to therapy sessions.
"I wish I could believe Karen would ever sit up in a wheelchair," he lamented. He gave me a reality check. I had been so upset to view my own child in a wheelchair that I hadn't considered the alternative.
Kelly after a makeover
(One year later as I was walking through Hanes Mall, an elderly couple approached me. "Are you Kelly's mother?" the lady asked. When I said yes, she hugged me and said, "Karen Fry got her driver's license today. I'm her mother, and I thought you'd want to know." Hope. There it was again.)
Heather and a Miracle
Kelly had a room directly across from the nurse's station on the 7th floor of the hospital. Heather, a Canadian nurse, kept the more watchful eye on my child, but she didn't like me. And who could blame her? I yelled at her constantly, and nothing she did was ever fast enough or good enough. I refused to let her bathe my child. One day I climbed into the large bathing tub with my clothes still on, holding Kelly beneath her armpits. I was afraid Heather would bump her head on the faucet as another nurse had done.
And Heather couldn't stand me for another reason. I had become totally selfish. Christy Barrett was another teenager admitted to Brenner's with a TBI and multiple broken bones. Christy's head injury was open, not closed, and she had just come from surgery. Heather wanted me to give Kelly's room to Christy, who was having multiple seizures. I could see Christy seizing and the nurses running. They didn't think that Christy would live another day. The nurses wanted her room to be across from the nurses' station so that they could come to her aid immediately. I said, "No, this is Kelly's room!"
I must have subconsciously felt that if Kelly was moved to a more remote room, the nurses might forget about her. This thought was of course irrational, but it felt all too real. Playing on my guilt, the nursing staff eventually won. As we began our evacuation, I watched Mrs. Barrett faint and fall to the floor. I laughed, thinking that I never fainted so I must be stronger. I may have allowed the room trade, but I was furious. What was I becoming? I didn't feel anything for the Barretts but anger. They stole Kelly's room!
Later that day Kelly was taken to her therapy sessions in a wheel chair and, for the first time, a magic marker and paper pad were placed in her hands. She grabbed them and wrote a whole and complete sentence, "I'M LOST IN MY MIND."
Kelly is alive in there, I thought. Kelly is coming back to us, and she knows something horribly wrong is going on, but she is fighting. Kelly is here!
The day before Kelly's written sentence, I met a woman whose teenager came to therapy here. Her daughter was the victim of a burst brain aneurism in 1991. The teenager told me to keep right on hoping. I asked what she had learned that day.
"To write a complete sentence," she replied. Wow, I thought, my child had already done that very thing.
Kelly's first written sentence
Double-Jointed, Double Vision
For two weeks, I'd prayed for my daughter to move with purposeful motion. Today, week three, I take that back. Kelly is double-jointed, and her toes were causing us trouble! After a severe closed-head injury, any muscles in the body can be in paralysis. Kelly couldn't swallow safely and had a feeding tube that went down her throat into her stomach. Her arms were in restraints to keep her from jerking out the uncomfortable tube that nourished her.
Today I nodded off, and she bent her feet upwards and her toes grasped the offending...
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