Andrea De Santis for Reader's Digest
I stood in the bathroom doorway of our Vancouver Island home watching my wife, Pat, prepare to go out to lunch with friends. As I leaned against the doorjamb and took in an eyeful of the woman I have loved for close to half a century, I felt a bit odd. Not nauseated or faint, simply odd. Perhaps a bit weak. Nothing that a brief lie-down wouldn’t cure.
I bid my wife au revoir and drifted to sleep. When I awoke, two hours had passed. I made my way to my study, sat down at my computer, and noticed my right hand was sluggish.
This was definitely strange. I had developed the habit of searching the Web for the peculiar things happening to my body as I got older, so I typed stroke into Google. I can’t say why I typed stroke and not flu or Lyme disease or heart attack.
I found the common symptoms: sudden numbness or confusion, trouble seeing or walking, dizziness or severe headache. I also found several tests: Can you raise your arms? Can you smile?
I lifted my arms above my head. I smiled. So I told myself, You’re not having a stroke.
Still feeling tired, I went back to bed. I had the flu, that was it, although the image of my uncooperative hand still nagged at the back of my mind. And I still felt odd … perhaps a little light-headed or dizzy.
At about 4 p.m., Pat came home. “You’re still in bed!” she remarked.
“Yes,” I admitted.
Another hour passed, and I still felt odd. Finally Pat insisted we head for the hospital. At last, I thought as we were shown into an exam room, we can put an end to this nonsense.
The doctor asked for a detailed account of what had been happening. Then he performed a number of tests. He asked me to touch my nose and then follow his finger with my eyes. He told me to count backward by sevens. He had me squeeze his two fingers with each hand. He tested my reflexes.
I passed every test, so I thought what I’d been experiencing was just a temporary malfunction of the wiring.
“I’d like to keep you in for observation,” the doctor said.
My jaw dropped. “Didn’t I just pass your tests?”
“You might be having what we call a stuttering stroke,” he explained. “It happens over several hours, perhaps even several days. You’ve likely had a number of ministrokes since this morning. If that’s the case, the likelihood of being struck by a larger stroke is very high.”
Andrea De Santis for Reader's Digest
He told us someone would be along as soon as there was a free bed. Pat sat beside me working on a crossword puzzle while I squirmed in my seat. I remember trying to find a comfortable way to sit, something I suddenly found extremely hard to do.
Then the light started to disappear. Close in on itself. Into a tunnel.
Soon there would be no light. There would be an absence. Of everything. Of everyone. Of Pat. “I’m dying,” I said. I was terrified.
I could hear Pat calling for help as I slowly slid to the floor. Then the room filled with intense white light. I was surrounded by people who hoisted me onto a stretcher and whisked me into a treatment room, where they inserted an IV and attached me to monitors. I could hear bleeps and beeps and people assuring me I was in good hands.
“What is happening to me?” I asked. My voice sounded like an old phonograph record spinning too slowly. The words seemed heavy and thick. I saw Pat standing in a corner, fear in her eyes.
The next thing I knew, my clothes were being removed. My pants came off. My arms rose above my head and my shirt slipped off.
“Aren’t you a lucky man?” a nurse said to me. “You’ve got five women undressing you.”
I laughed and agreed, but it was dawning on me that my movements were no longer voluntary. The lights dimmed. Pat kissed me on the forehead and departed. I was alone.
I remember nothing else about that night except a vague recollection of being shunted back and forth through a fluorescent glare, never conscious of where I was going. I had been sedated, which was a good thing, or I may have plummeted into the black hole that engulfed me. I curled up, thinking the fetal position offered me the most reliable protection against free fall.
When Pat returned in the morning, she told me the doctors had confirmed the diagnosis—I had suffered a stroke. How severe it had been, no one knew yet. It would be another 36 hours before I was told what I never, ever thought possible: that I might be paralyzed on one side of my body. Soon I would learn that not only could I not move, but when I went to form words, my tongue was heavy, my vocal cords twisted. My words were strangled.
As I lay there, the confusion was overpowering. Everything seemed so vague. So alien. Nothing made sense, no matter how hard I tried to slot a sight or sound into a compartment of my brain.
In the afternoon of the second day, a woman came into my room and said I had been assigned to a bed on the fourth floor. Pat packed up my belongings, and the porter rolled me up to the acute-care ward, past people shuffling along in nightgowns and patients in wheelchairs.
As soon as I had been transferred from the stretcher to the bed, a curtain was whipped around its track and I was partitioned off from the rest of the room. A nurse told me, “If you need assistance, just press the buzzer on the pillow. Someone will come running.”
I don’t know what kind of magician she figured I was. I couldn’t reach the button, and even if I could, I lacked the strength to press it.
I yearned to close my eyes. I could see that Pat was anxious to get home, but I think she feared she would be abandoning me. Finally, I said, “Go. Please. I need to sleep.”
My sleep was interrupted by people taking my blood pressure, my pulse, my blood. I was made to sit up and swallow several pills. When Pat arrived midmorning the next day, I woke up torn between panic and a huge sense of relief. Panic because the stark reality of what was happening was finally beginning to sink in, and relief because my most reliable connection to the outside world was seated at my elbow. She would protect me. I was certain of that.
Later, I saw a face peek around the curtain. Our daughter, Nicole. I wanted to leap out of bed and embrace her, but all I could do was lie there like a beached whale. It’s unsettling to have your children see you so vulnerable, and for a moment I felt desperate. Almost ashamed.
I had always presumed my daughter saw me as a figure of strength, as someone who would protect her. I had a sense of having let her down. Of disappointing her.
She leaned over and kissed me. “Oh, Dad,” she said. “I’m so sorry.”
“Me, too,” I said, sounding like I was chewing on rubber bands.
Ready for rehab
That afternoon, a rehab doctor appeared at the end of my bed. At first, he told me, they’d thought my stroke was fairly mild. Nothing showed up on the CT scan. But a second scan revealed I’d had an ischemic stroke—an obstruction in a blood vessel—on the left side of my brain, resulting in the paralysis of my right extremities.
“What caused it?” I asked.
“We don’t know. I’d guess hypertension. Your blood pressure was very high. But you have other conditions that could have been contributing factors.”
Risk factors for stroke include high blood pressure, diabetes, high cholesterol, sleep apnea, and being overweight. I qualified on all fronts.
“The good news,” the doctor said, “is that a bed has become available in rehab. You’ll be put on a six-to-eight-week intensive rehab course, followed by eight weeks as an outpatient. You need to be willing to work hard. What do you think?”
“Yes, I can do it,” I answered, although at the moment my body suggested otherwise. “Count me in.”
The next morning, Pat and Nicole were both there when a man and two women arrived to take me for a walk. With one swift movement, they had me perched on the side of the bed. “We’ll walk as far as Nicole, OK?”
I stood, slightly stooped, looking across the room at my daughter. I shuffled, my left foot lifting, my right foot dragging behind. Each step seemed like a gigantic task. I almost lost heart halfway across the room, but I refused to give in.
I walked a distance of only 20 feet, but Nicole seemed excited and applauded. “Oh, Dad,” she said. “You did it. I’m so proud of you!”
“Congratulations,” the therapists chimed in. “You’re ready for therapy.”
“I’m so hungry,” I said. “Even a bowl of gruel would be nice.”
A young nurse lifted my wrist and took my pulse. “We’re not allowed to give you anything to eat. Not until the Swallow Lady has been to see you.”
Andrea De Santis for Reader's Digest
I stared up at her. “Swallow Lady? Who’s that?”
“The speech therapist. We don’t want you choking on your food.”
“I can swallow,” I said. “I’ve been swallowing a bucketload of pills.”
“Yes, but that’s different,” she said as she disappeared beyond the curtain.
The swallow lady
She carried a notebook and pen, and a bag that contained saltine crackers, some applesauce, and a box of juice. The Swallow Lady. “Are you ready for the tests?” she asked.
“Yes,” I said, ready to show her I could swallow.
She leaned over the bed and placed her fingers gently on my throat. “Try swallowing for me.”
What could be easier? But my mouth was dry and my throat constricted. I couldn’t swallow. The harder I tried, the more my throat tightened up.
“Relax,” she said. “Try moistening your mouth.”
I managed to work up some saliva. Then my chin pushed forward, my neck stretched, and I swallowed.
“Good,” she said. “Everything appears to be working.” She scribbled in her notebook, then passed a cracker to my good hand. “Now try eating this, but do it slowly, in little pieces.”
Immediately, I took a good-sized bite. The cracker stuck to the roof of my mouth. I couldn’t chew and only managed to spit it out.
“Nibble,” she said. “Tiny bits.”
I felt like a fool. How could I not swallow? But I did as she suggested, taking a tiny bite of the cracker, and then swallowed.
“Good. Now try this. Sip slowly.” She poured a small amount of juice into a paper cup, and I drank it, forcing myself to concentrate on each stage of swallowing.
The therapist smiled. “You’ve done well. You’ve passed the test. For the first few weeks, your food will be minced or pureed. You must eat and drink slowly and carefully. This is only one of many things you’re going to have to relearn how to do.”
Relearn. That word would become a mantra of my therapist community. Restoring what has been damaged is a very complicated process.
Rehab and relearn
My first night in the rehab ward was terrifying. Alone with my thoughts, I no longer felt like I belonged to the human race. My brain kept taking tours into my distant past. I drifted in and out of sleep, and through the night, I wept.
Yet memories, I was convinced, were the one touchstone I shared with my old self. They worked like a metaphor to help establish my new claim on “being.” A part of my brain was damaged, but other parts seemed to be working overtime to compensate for what I had lost.
Thankfully, Pat would not let me feel sorry for myself. Nor was the staff tolerant of any quitting. As I traveled through the halls in my wheelchair in the weeks to come, I heard a chorus of voices raised in a song of healing. Rarely did I hear anger or annoyance escape anyone’s lips but my own.
That first day of rehab, I had an appointment in the gym. “Do you know the way?” one of the nurses asked. I realized they expected me to wheel myself to the gym. Good luck, I thought. I couldn’t begin to go in a straight line. My right arm hung lifeless in my lap, and when I pulled with my left hand, I did doughnuts, spinning in circles.
“Drag your left foot along the ground as you push,” a nurse advised. When I tried, I made it a few yards before I veered right and smashed into the wall. “Perseverance,” she called to me.
I repeated the lurching motion, once again smashing into the wall, then continued down the hall, swerving to my right, almost colliding with an elderly woman. Then, to my surprise, I bolted in a straight line toward the gym.
The next few weeks were a grueling process of relearning and repeating the simplest movements: swallowing, standing, stretching.
To regain movement on my damaged side, I practiced “mirror therapy.” The goal is to fool the brain. A mirror was placed on a table by my right shoulder, my right arm behind the mirror. Then with my good hand I performed several simple exercises, staring in the mirror as hard as I could.
I drummed my fingers, formed a fist, flexed the fingers of my left hand. I did this slowly so my brain could take in the movement, pausing and then repeating, for about a half hour.
What I saw, of course, was the reverse image. I thought I was looking at my right hand doing the movements, not my left hand. My brain was being fooled. Or was it? I wasn’t sure. But I was determined to embrace this little deception. I think these exercises helped forge new pathways between the hemispheres of my brain.
One day, after a few weeks, Nicole was sitting opposite me when she jumped to her feet and shouted that my damaged hand had mimicked the movement of my good hand. At first, I didn’t believe her, but then I lifted my paralyzed arm and, much to my amazement, flung it in a circle, hitting the mirror. I let out a whoop. I had movement in my arm for the first time since the day of the stroke!
The week before Christmas, five weeks after my stroke, the rehab doctor came to see me one morning. By then, I was able to stand on my own. I had started to climb the stairs in the gym, hanging on to the railing. I could pedal the stationary bike for 15 minutes. And I was now able to transfer myself to the toilet without assistance.
Sure, I sometimes became morose, but I had taken a vow: to remain positive and happy. And recover.
The doctor said to me, “Would you like to go home for Christmas? Then if things work out, you’d return in the New Year as an outpatient for three months.”
I was both elated and a bit scared. “Who’ll take care of me?” I asked.
“Pat. Your wife? You do remember her, don’t you?” he said, and then he smiled. “We think you’re ready. Pat’s keen to give the idea a go. We’ll supply all your medications and requisitions for the aids you need—wheelchair, walker, anything to make your home more comfortable.”OK, I thought, being home was a good choice. As the doctor turned to leave, he smiled and said, “Merry Christmas.”
I spent most of Christmas Day sleeping. Nicole arrived the next day with her partner, Iain, and their daughter, Flora. As soon as my granddaughter saw me, she frowned. What happened to Poppa? She was intrigued by my wheelchair. And fearful.
“They’re my legs,” I told her, “until Poppa gets better.”
The sorrow I felt choked me, and if my lips had parted, the whole neighborhood would have sworn they’d heard a lone wolf cry in the wilderness. As they were leaving the next morning, Flora said, “Poppa, please get better.”
A year would pass before she felt confident enough to approach me and wrap her arms around my legs. By then I was walking with a cane.
Meanwhile, my weeks of outpatient therapy were monotonous, but the benefits were immeasurable. I pedaled a stationary bike, climbed steps, and did leg lifts, squats, and arm pulls. I was finally able to pronounce a word without confusing the vowels and consonants.
My emotional control was still fragile. I would weep when I saw scenes of poverty on TV. The silliest jokes could give me unstoppable giggles.
I’ve learned that there is nothing smooth or predictable about stroke recovery, but there’s also no limit. The old notion that there is a finite window in which to achieve rehabilitation is simply false. So, like most stroke survivors, I expect full recovery. It’s unlikely I’ll return to being the person I once was, physically, mentally, or spiritually. I have both lost and gained things that define who I am as a person. But with the advances in treatment and therapy, I believe I can continue to repair and rebuild, and find a place for myself in my reconfigured world where I feel both valuable and valued.
Purchase your own copy of Ron Smith’s, The Defiant Mind.