By C.J. Carnacchio
Leader Editor
If everyone had just blindly accepted the medical community’s diagnosis and basically ignored her, Phyllis K. Klenk would probably still be lying in a bed somewhere, trapped in her body and living out her days as a nonperson.
She might even be dead.
But thanks to her husband and a friend, the 66-year-old Addison resident, who helped design the Upland Hills School building in the late 1980s, is now living at home and has written a book about her experiences since the day she went into a deep coma 18 years ago.
Co-authored with her friend and fellow Addison resident Greta Emling, the book is entitled ‘Wounded, Trapped and Voiceless . . . All Things Are Possible.?
While the book has many purposes and chronicles experiences that range from the physical to the spiritual, Phyllis? main message to readers is this ? ‘Other people need to listen and talk to the person that’s in the coma. Talk to them like they are really there. People need to know you can hear everything.?
Greta hopes the book will heighten awareness about people who are in comas and those who suffer from locked-in syndrome, a condition in which patients are aware and awake, but cannot move or communicate due to complete paralysis of nearly all voluntary muscles in the body except for the eyes.
‘That really was the fuel (for this book), to help other people who are trapped in their own bodies, but they’re really awake,? she said.
Although Phyllis started out in a deep coma, she eventually woke up, but found herself in a locked-in state rather than the ‘persistent vegetative state,? which defined her medical and legal status.
Phyllis? husband of 40 years, Mike, hopes the medical community will read this book and develop some humility and open-mindedness.
‘Medical people need, and I say this with all respect for them, to realize their name is not spelled G-O-D,? he said.
The day that changed Phyllis? life forever
Nov. 7, 1991 was the day everything changed for Phyllis and would never be the same again.
At age 48, a slow brain bleed caused the normally almond-sized hypothalamus, a region of the brain, to swell dramatically in size.
Located just above the brain stem, the hypothalamus controls an immense number of bodily functions including food and water intake, sleep-wake cycle, motor functions, emotions, autonomic and endocrine functions and homeostasis.
Three drops of blood had seeped from a capillary, releasing poisonous by-products into Phyllis brain. The blood contamination to the brain stem had the effect of a ‘sharp severing knife.?
Mike used the analogy of having all the plugs into an old telephone switch board pulled simultaneously.
The brain stem is an extremely important part of the brain because nerve connections of the motor and sensory systems pass through it from the main part of the brain to the rest of the body.
Emergency brain surgery saved Phyllis? life, but it could not prevent the deep coma she slipped into. She wouldn’t be able to communicate with anyone again until 1993 and it wasn’t until August 1994 when she’d see her home again.
Walking with Jesus
During the surgery, Phyllis claims her spirit left her body and went to heaven where she walked with Jesus Christ and conversed with Him without speaking words.
‘I felt so happy and peaceful walking with him, hand in hand,? she wrote in the book. ‘I was so at ease. It was my soft place to land. I just heard His thoughts and I understood. There were no perplexities, no mysteries. It is so easy for Him to put his arm around you and say, ‘I love you.??
Phyllis told this reporter it was unlike any place she’d ever been.
‘It was so peaceful,? she said.
Phyllis admitted heaven was ‘almost impossible? to leave and she ‘didn’t want to,? but she said Jesus told her she must go back to her body and she obeyed.
‘I deeply desired to do exactly what His will was for me,? she wrote.
A devoted husband
After Phyllis was originally diagnosed as being in a persistent vegetative state, it was suggested to Mike that he divorce her and turn her over to the state for care. It would then be up to the state to decide whether or not to ‘pull the plug.?
Phyllis was treated by the rest of the world as though she couldn’t feel, hear or comprehend anything, when in fact she could do all of those things.
According to the book, ‘She can describe the lawyers and other people in the room when she was asked the questions that determined her diagnosis. She heard and understood every word being said, but was unable to respond in any way. She was really ‘locked in? rather than in a ‘persistent vegetative state? as they supposed.?
‘They didn’t acknowledge it at all that she was conscious,? Greta noted.
Despite what the medical and legal community was telling him, Mike couldn’t and wouldn’t even consider betraying the woman he loved and pledged his life to.
He would keep visiting Phyllis at the Lake Orion nursing home where she went to live after leaving the hospital. He would always speak to her in a positive, caring manner.
When talking to someone in a coma, Mike advised to ‘treat them as though they were right there conversing with you.?
‘He spent a lot of time at the nursing home talking to me as though nothing was different,? Phyllis wrote. ‘Mike took me to vote. We read the newspaper together. We went to the movies.?
‘It was almost as if he didn’t see me as being disabled. I don’t think he cared that I wasn’t the same. He treated me the very same as he did before I got sick,? she wrote.
During the first seven months, Mike kept a journal of his visits with her. He recorded the responses he observed from Phyllis, but the medical community told him they were only ‘reflex responses,? not conscious efforts.
Sally helps draw Phyllis out
In addition to Mike, Phyllis was also fortunate enough to have another guardian angel in her life, a friend named Sally.
They had been friends for a long time before Phyllis got sick and had attended the same church.
When Phyllis fell ill, Sally regularly visited her in the hospital for months, then at the nursing home for the next three years.
According to the book, ‘She never gave up on Physsy (her nickname). Somehow Sally knew when she looked into Physsy’s eyes that Physsy was in there. She seemed to be able to peer right into her soul.?
‘Sally was my angel,? Phyllis wrote.
Eventually, Sally started bringing to the nursing home a cardboard version of a Bliss board that she made. It displayed the alphabet in four rows. Sally hoped the board would give Phyllis a way to communicate.
With enough time, patience and practice, eventually Phyllis was able to use her eyes to pick out letters and spell out the words she wanted to say to Sally. ‘They did this for hours and got so they could have long conversations,? the book stated.
‘I felt free. She could talk to me and did,? Phyllis told this reporter.
Although she couldn’t speak yet, Phyllis was eventually able to nod her head.
An IQ test set her free
The possibility that Phyllis? brain trauma had left her clinically depressed resulted in a psychologist being brought in to evaluate her. Little did she know, his visit would help set her free.
As part of the evaluation, Phyllis was given the Peabody Intelligence Quotient Test.
She was very familiar with it as she had administered it many times to students during her 26 years of teaching special education at Farmington Public Schools.
‘The psychologist began the test with Physsy as a number of nurses watched the process,? according to the book. ‘To their amazement, there was no ceiling with Physsy. She just kept getting all answers correct. She knew what her legitimate IQ was. As we say today, ‘she was messin? with their minds.??
The whole experience gave Phyllis the best laugh she’d had in years.
‘I laughed, but they couldn’t hear me. I could only laugh inside myself,? she wrote. ‘It was so funny. It was my joke. They were amazed at my fake IQ of 140 . . . They found out much more than they thought they would. Certainly the cat was out of the bag that I was not a vegetable.?
Phyllis was well on her way to reclaiming her life.
‘It was such an important day for me. My whole life changed after that. It was really the beginning of my freedom,? she wrote.
Phyllis takes a meeting
Now that the nursing home staff was well aware of her ability to think for herself, they were uncomfortable with the ‘no resuscitation? order that was in place regarding her.
A meeting was soon arranged with Phyllis that included a social worker, the nursing home doctor, the head of the home and other staff. Although she still couldn’t talk, she could listen and nod her head in response to questions.
One by one the staff members reported on ‘how clearly Physsy was thinking and her ability to make her own choices.? It was even noted how she hated soap operas.
As a result of the meeting, the ‘no resuscitation? order was changed. ‘Isn’t it interesting how differently things went for this supposedly vegetative woman after the IQ test had been administered,? Greta wrote.
First words
Sometime in 1993, Phyllis uttered her first words in about two years. Mike came into her room at the nursing home and she said, ‘Hello, Mike. How are you??
‘Her words came forth as though she had a mouth full of marbles and she sounded much like a frog, but nevertheless, Mike understood,? according to the book.
Upon hearing those garbled words, Mike, who’s part of John Wayne’s real-men-don’t-cry generation, said, ‘I just dissolved into tears, just absolutely fell apart.?
When asked how it felt to speak again, Phyllis smiled and replied, ‘Great.?
Phyllis gets her day in court
Now that she could speak, Phyllis was able to go before a judge and get her legal rights back. The judge asked her a few simple questions ? Who are you? What year is this? Where are you?
‘She uttered her answers with muffled and garbled words, but just as a mother understands her babies, Mike and her three sons understood her words,? the book stated.
The judge concluded she was cognitive and restored her legal rights.
Don’t miss Part II of Phyllis? story in next week’s issue. Readers will find out about her long-awaited homecoming, her recovery, what life’s like today, how her book came to be and what she’s learned from all this.