By Ethel Lee-Miller
In January 2005 some of my brother-in-law’s brain cells went on strike. He went in for a routine surgery. And those pesky brain cells, they kicked back, folded their little brainy arms, put their feet on their gray matter desks and said, “We’re done.”
Some of them not only kicked back. They kicked— completely. Paul had a series of strokes, which turned his world upside down. When I met my sister at the hospital that day, we went to the Intensive Care Unit and saw my usually smiling, healthy brother-in-law hooked up to more machines and wires than Dr. Frankenstein could have rigged. Paul’s eyes followed my twin sister as she rushed to the side of the bed.
“Paul! Paul, are you all right?”
“Yes, thanks,” came his strangely flat reply.
Whew! Eileen and I looked at each other. He’s here. He’s alive! Relief.
But his right arm didn’t move. He couldn’t wiggle his toes. And when we spoke…
“Paul, what did the doctor tell you?”
“Paul, Where is the doctor?”
Whoa. This is odd. Over the next few weeks, months, one year, then two years, with daily therapy, Paul regained the abilities to stand, walk, move his hand, and speak more, gaining strength and mobility. To all who see him he is the old Paul. But there’s that odd speech quirk. Aphasia- a communication disorder arising from brain trauma that damages the language areas of the brain does not affect a person’s intelligence.
Paul has what is known as fluent aphasia. Every few sentences he hits a blank wall in speech. The word he wants is locked in the cerebral files and those brains cells are still perversely on strike. Months of speech therapy attempted to train other cells to operate to handle the workload, but you know as well as I that replacements are never the same as the originals, and not as reliable either.
“I can see the word in my head,” Paul said, looking up.
‘We have to get to the airport early for the baggage’ came out as ‘We have to get there early for the ballgame.’ This was followed by a surprised or disgusted look on his face, depending on his coping skills that day. Odd quirk indeed. A huge quirk.
This is a man with amazing coping and compensation skills. A former pilot, flight instructor, motorcycle safety instructor, artist, and cartoonist, Paul uses cues from his life to aid conversation. In the first year of recovery, he started sketching quick, little US maps on a pad of paper he kept with him to pinpoint the exact location of what he was talking about.
“Oh, you mean Frank, in Arizona.”
“No, no,” he says impatiently, jabbing at his map, “Farther west.”“Oh, you mean your friend in Oregon.”
“Yes, yes,” he says delightedly, with a big smile.
He pulls bits of information from my life to expand what he is trying to explain to me.
“She’s in the same state as your stepdaughter.”
He has a new quantitative vocabulary.
“Rich’s daughter is 10, 11, 12, 13, 14, 15, 16, 17…17 years old.”
He resolved daily, and still does, to do physical therapy, occupational therapy, speech communication classes, vision therapy, to take yet another blood test, brain test, eye test, or speech test. He writes his name over and over on primary-lined paper. He sits with his reading instructor, who is an aphasia success story, reading slowly aloud. He relearned the sequential steps of making a cup of tea for himself. He is determined not to let this monster brain disorder conquer him.
He joined others in aphasia recovery at the Adler Aphasia Center in Maywood, New Jersey. Adler is a haven for aphasia clients and caregivers in offering support groups and daily programs in life experiences—computer skills, reading, writing, art, and cooking, along with constant communication at any and all levels. Paul has learned countless ways to supplement speech to gain understanding.
At a party at the Center, part of the entertainment was playing charades. One of the members laughed saying, “That’s what we do all the time.”
And it’s true. We all join in gestures, acting, bending, stretching, and pointing to things to speak to each other.
My sister has fourteen folders for the different doctors and countless prescriptions for his meds. I’m astounded at my twin sister’s ability to find, cajole, and convince another doctor, social worker, or administrator to cover more therapy. She developed more routes to hospitals and medicenters than any metropolitan car service as she put more than 300 miles a week on their car. She persevered through endless paperwork, online research, and phone calls to have Paul qualified for individual private transportation to Adler or to doctor appointments. Where many people might have given up when they compute the comparison of time it takes for the public pickup versus just staying home and watching TV, Paul’s attitude is “never give up.”
I feel scared and helpless when Paul throws the paper and pen to the floor and shouts, “F— it, this is too hard, too much!”
Our family rallied to cook, drive, send cards, hug, and support Paul and Eileen and each other. The BMW North Jersey Motorcycle club had a rally that first year to raise money for expenses. His Aero Safety Training Center friends, where he was a flight instructor, invite him to dinners. We’re the lucky ones—we have each other. Many stroke victims do not have such resources we have.
Even though recovery moves forward, it’s like all recovery— two steps forward, one step back. He learned how to say words that start with L. But that was the week his blood count was off. He mastered answering the telephone, but he could no longer lift a suitcase with both hands.It’s too much. It’s too forever.
I hug my husband extra tight each night with a survivor’s guilt. I tell my friends and family I love them more times than they probably think is necessary. I’m motivated to take members of my Toastmasters Communications Club to The Adler Aphasia Center to start a speaking class. We go and model eye contact, handshakes, and deliver clear sentences. The aphasia members model courage, humor, and love. I’m pushed to anger when I’m at a restaurant with an aphasia recovery friend. He tells me the last waitress barked, “Whattsa matter? Cat got your tongue?” as he silently searched his brain to see, hear inside his head, and then say the word jam.
I’m moved to tears when another aphasia recovery person asks me in all earnestness, “What do I do when the supermarket clerk says, ‘Get out of line if you’re gonna be so slow about it.’ I was only searching for the word thank you,” he tells me with a defeated shake of his head.
All of us in Paul’s world—relatives, friends, neighbors, his former students and colleagues—learn patience, give wait time as Paul searches for a word, no music or TV in the background to reduce distraction, have a pad and pencil handy in just about every room of the house for writing clue words. These are the daily “things” we can do, and I am amazed at the progress Paul continues to make each time I see him.
Most of all, I am in awe of the love I see between my sister and her husband—not only in their obvious affection, but in the quiet way she responds to his frustration, “Paul, listen to me. You have to hold the camera on this side. This way.” He reaches his hands up the way she did, and looks at her with all the trust in the world that this incredible woman will accompany him on the path they are determined to forge together.
This past winter my sister and Paul made the decision to fulfill a long-held retirement dream to move to Arizona. Many friends and family members were less than enthusiastic that they would be moving away from family, friends, and support systems that were built up.
“We’ll find support there,” Eileen stated with incredible confidence. We had vacationed in Arizona and knew there was aphasia work being done at the university. On July 1, 2007, two and a half years after their world turned upside down, Paul and Eileen got in their car, and left New Jersey to drive cross-country for the next adventure. And that’s another story.
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