Healing into Possibility
The Transformational Lessons of a Stroke
By Alison Bonds Shapiro
H J Kramer and New World Libray Copyright © 2009 Alison Bonds Shapiro
All rights reserved.
IN MAY OF 2002 I had two brain-stem hemorrhages twenty-four hours apart — two strokes — which left me profoundly disabled. Today I'm no longer profoundly disabled. Today I'm more empowered than I've ever been. Who could have imagined the way this would unfold? I certainly couldn't, not in the early days, when I thought that maybe surviving a brainstem stroke wasn't such a great idea — that maybe I'd be better off dead than disabled. At the time, I had a 50/50 chance of surviving. Only 50 percent of people who have brain-stem hemorrhages live. I could just as easily have died. And for a while I was sorry I hadn't.
So what was the setting for my transformation? Who was I when I had the strokes? The basic facts are these: I was fiftyfive years old. I was reasonably fit. I exercised regularly. I didn't smoke, and I didn't drink. I had low blood pressure. I was free of diabetes, and ate a good diet. I had no risk factors for a stroke that anybody could have discerned. I was happy. I loved my husband. I loved my life. I lived in a beautiful place. My children were grown and out of the house. I was in the middle of fulfilling a lifelong dream. None of this seemed to matter much. I had a stroke anyway.
These days I pay attention to stroke literature. No big surprise. We all tend to pay attention to the things that are up close and personal. Most stroke literature talks about preventing strokes. Prevention is good and important work. Many conditions exacerbate the risk of stroke and can and should be controlled. Nobody who thinks about it wants to encourage anyone to have a stroke. But the point is that strokes happen regardless, and there's so much more we can learn about what to do after a stroke. And we can learn what this experience — and what any powerful, life-changing experience — has to teach us.
On May 3, 2002, I woke up and got out of bed to go to the bathroom. It was morning, around seven o'clock, on a lovely warm day. I'd gone to bed early the night before and was well rested, eager to get back to work on my lifelong dream. When I stood up, I noticed that I felt shaky. I walked the very short distance to the bathroom, noticing the slightly odd way I was walking. I sat down on the toilet to pee; I knew I was urinating because I could hear myself, but I couldn't feel it. "How strange," I thought.
I have a tendency to experience low blood sugar, so my next thought was "This is the worst case of low blood sugar I've ever had." I headed to the kitchen to get a piece of fruit as a quick way to raise my sugar level. Our house is small. The kitchen shares a wall with the bathroom and the bedroom, and its far side opens into the living room. I came out the bathroom door, turned left, and reached for a piece of fruit. The nearest was an orange, which required that I either peel it or cut it. Cutting seemed easier, so I picked up a knife. I looked down and wondered at how much trouble I was having directing my hands. "Really, really low blood sugar," I thought.
Then the phone rang across the room. The phone sits on a table beside a blue couch by the windows with the long view over the bay. I walked over, answered the phone, sat down, and began to talk. Something was funny with my speech. I was having trouble forming words. The person on the other end, my husband's daughter, noticed immediately that my speech was slurred. "Hang up and call 911," she said. She didn't say, "You might have had a stroke." I had no clue what was happening. I was still operating on the low blood sugar premise. I listened politely, but I didn't think it was a big deal, so I thanked her and hung up the phone. To humor her, I decided to dial the twenty-four-hour on-call nurse at my health plan, Kaiser Permanente. Of course the on-call nurse knew what might be going on. She immediately told me to call 911.
Feeling quite foolish, I woke my beloved husband, Bob, and called 911. We lived on a mountain and knew the paramedics at the fire station up the road from various disaster-planning activities in our neighborhood. The station was only three minutes from our house. In a very short while, paramedics I knew came up on the porch and in the door. They proceeded to start the drill I'd learned in my first-responder training, asking me the usual questions — starting with "What's your name? What's today's date? Where are you?" — all of which I answered easily, feeling more and more foolish. Then they called the ambulance to take me to the hospital. Paramedics are wonderful. If I ran the world, paramedics would be paid more than the people who play professional sports.
As we waited for the ambulance, I was still thinking that this response was way, way over the top, and I was both scared and embarrassed. The ambulance came, bringing more paramedics with it. The new ones put me in a lift chair, carried me down the steps, and loaded me into the waiting ambulance. They wouldn't let me sit up. They insisted I lie down, and they took my blood pressure. One of them sat beside me the entire trip. I struck up a conversation with this paramedic, who like all the rest was a lovely person — friendly, warm, and professional. I thought that I would rather talk to him than think about how silly I felt, lying there in an ambulance with my beloved husband following behind in his car.
At the emergency room I was taken in right away and sent for a CAT scan. A little while later the doctor came in and said, "You have bleeding on your brain stem. You might die. But I think you'll be all right." I was fifty-five and fit, right? I didn't think I was going to die. I still didn't know that I'd had a stroke. All I concentrated on were the last words he'd said: "... you'll be all right." "Fine," I thought. "I'll be all right. Let's get out of here."
Fortunately, the doctor was wiser than I and insisted that I be admitted to the neurological intensive-care hospital an hour south of my house. This required another ambulance ride and another long stretch of following behind for my husband in his car.
At the new hospital, the neurologist told me that he would have sent me home. Luckily for me, the emergency-room doctor at the first hospital had other ideas. After a long wait in the emergency room at this second hospital, I was admitted, placed in the neurological intensive-care ward, and given treatment to attempt to reduce the swelling in my brain. Brains don't like blood loose in the wrong place. The brain sees blood outside the veins, arteries, and capillaries as poison. Loose blood kills brain tissue, and the rest swells up in response to the injury. It's a good thing that I was in the hospital, because sometime after midnight, on May 4, I had another bleed, with the potential for ever more swelling and escalating damage.
Sometimes when people have hemorrhagic strokes, neurologists perform brain surgery to stop the bleeding. They don't like to do this with the brain stem. The brain stem is the old part of the brain. It's little. It's compact. It controls really important things like breathing and your heartbeat. Cutting it open can do more harm than good. Serious swelling and pressure on the part that regulates your heart or your lungs can make you dead. We could only pray that the bleeding was stopped and wouldn't start again.
Only enough blood to cover an area of roughly 2.7 centimeters in diameter got loose in my brain. That's not much, not much at all. But that little bit of blood in the wrong place, in that highly delicate brain stem, caused the following problems: My left arm was completely paralyzed. Most of my left leg was paralyzed. My trunk muscles wouldn't respond. I couldn't sit up. My right arm and leg responded to my thoughts of moving them, but they were wildly uncoordinated and wandered all over the place. My swallowing reflex was gone. I had to have a feeding tube inserted up my nose and down my throat. My speech was heavily slurred, and I had very little breath with which to speak. I was pretty hard to understand. My eyes wouldn't focus. My ability to control my emotional expression was shot. I either looked as if I were devoid of feeling or I laughed or cried uncontrollably — often both at once. I lost control of my bladder and my bowels, so I had to wear diapers, which was better than what happened later, when my ability to urinate on my own shut down for ten days and I had to be catheterized every six hours.
If you have never had a brain injury or a stroke (and I hope you never have and never will), you'll find that it's virtually impossible to imagine the depth of the injury and the overwhelming fatigue that accompanies it. You can see the obvious disabilities in people who've had strokes or other brain injuries. But what you can't see is the extraordinary effort it takes to do the smallest thing. What you can't see is the way the body responds to the attack on such a fundamental organ. The power of that fatigue is unlike anything I'd ever experienced; there's nothing even close.
So many problems were created from a little bit of blood in the wrong place. I'd received a real-world lesson in just how fragile bodies are. And now I was in the hospital, profoundly injured and disabled, and the lessons this experience would teach me began. I couldn't see them as lessons at first. I was struggling to stay alive. But nonetheless I was beginning to discover the power of transformation.
I was beginning to learn that it's not what happens to us that matters, not even something as bad as a brain-stem stroke. What matters is how we deal with what happens to us. How we work with what is — whatever that might be — makes all the difference.
The rest of this book is about what I learned and how I apply these lessons to my whole life, not just to my recovery, which, by the way, has been remarkable. I'm aware of my continuing limitations, but most folks have no idea I had two strokes unless I tell them.
A Lifelong Dream
I SUPPOSE IT'S A GOOD THING that I had no idea how the transformative lessons of my life would unfold. If I'd known, I'd probably have locked myself in my room and thrown away the key. I sometimes jokingly remark to my friends that it used to be so hard to teach me important lessons that it took two strokes to get me to pay attention. I trust that you're considerably smarter and more teachable than I am.
The story of transformation starts, for me, with a lifelong dream. It starts with my beginning to reach for something I'd always wanted and hadn't acknowledged out loud, something I hadn't been willing to believe until then that I could take action to achieve.
Until shortly before the stroke, my life had been a series of episodes threaded together by work and marriage and children, not so different from many other lives. When I was in my midtwenties and getting a divorce, I went to work to support my two small boys. This was during the early 1970s in Atlanta, Georgia. Women in Atlanta in those days weren't expected to have careers. I was taught that my job was to get married, then have children and stay home with them. The only career in the picture was supposed to be my husband's. Not too many years had passed since my mother stopped insisting that if you were going downtown you should be wearing stockings, heels, and gloves.
I needed a job after my divorce, but I certainly had no training for a career. Finding what I could, I went to work as legal secretary and apprentice bookkeeper in a small law firm in Atlanta. The firm had two offices and two lawyers. One practiced litigation. The other practiced real estate. Another legal secretary and I shared the open work space with the file cabinets, typewriters, and copy machine. The law library, the first room you saw as you entered the space, doubled as a conference room and was filled with impressive-looking books. Unfortunately, my job included the ceaselessly boring task of replacing loose-leaf pages in those books whenever new case law was enacted.
I quickly figured out that I didn't like being a secretary. I'm not all that fond of being told what to do. Lacking flexibility and with little in the way of formal skills, I followed the path in front of me, teaching myself to be a paralegal with a focus on commercial real estate simply because that's what the lawyer I worked for did. I took a course on law at a state college, learned how to do title searches and closings, and then went to work for a big law firm. The main advantage of working at a big firm, as I saw it, was that I could learn new things and maybe have some small say in what I did.
At the big firm I was given an office. The office had been a closet before I moved in, and the desk spanned the entire width. Fortunately the closet had two doors. I came in the first door if I wanted to sit behind the desk. If something fell off the front of the desk, I went out the door into the hall and opened the second door to get it. But it was my very own office, and I loved it.
Working for the big firm was satisfying for a couple of years, until one day I realized that I'd learned enough to catch the mistakes of some of the lawyers around me. I thought about this and looked at their offices, their lifestyles, and their salaries. I said to myself, "They're making ten times as much money as I am." This didn't seem like a reasonable proposition to me. I felt as capable as they were, although I knew I lacked their formal training. Going to law school wasn't an option for me, and by that time I'd decided that I didn't really want to be a lawyer anyway. What was I to do next?
Still following the path in front of me, I looked around and discovered an opportunity to work for a client of my current law firm who was in the real estate development business, with a specialty of creating neighborhood shopping centers. These centers are familiar to most people. Neighborhood shopping centers have grocery stores, sometimes discount department stores, and big drugstores, and the small businesses so many people go to — the cleaners, card shops, and restaurants. As with any other commercial property, neighborhood shopping centers need to be planned, financed, built, leased, and managed. There was plenty of work to do, and I was eager to do it. This new job brought me many more new things to learn.
And so began the eighteen years I was to spend in commercial real estate property operations doing management, construction, leasing, marketing, and all the other multitudes of tasks that particular business brings with it. Being a jill-of-all-trades appealed to me, and I took to my new world. Once in it, I discovered that this was also a world in which, at last, I could have more say in what I did and what choices were made. That appealed to me too. Staying in Atlanta, getting remarried, and managing large, multiuse properties, then moving to the West Coast while continuing to raise my children — these were busy times.
On the West Coast, I ran diverse properties in four states, got another divorce, went to graduate school to earn an MBA, and met and married my third husband, Bob, the love of my life. With my MBA in hand — formal training at last — I left the real estate business and began consulting for small businesses and nonprofits.
I had always followed my nose. I'd been happy and good at what I did, but despite it all I'd never had the courage to reach for what my heart really wanted to do. Hidden in all that activity — all that working in the business world, making a living, and raising my children — was the secret avocation of my heart, making art. I loved to paint and draw. My inner, unspoken wish was to illustrate a children's book.
Throughout the years I hadn't had much time for drawing and painting, but I made what little time I could. I would draw when the boys were asleep, their sweet innocent faces peaceful and serene. I reached for paper and pencils whenever I could capture a few minutes to myself, whenever the demands on my time slowed down enough for a breath.
On the West Coast, the boys grew up and moved on with their lives. Though I was working sixty to seventy hours a week, which required traveling to all the properties I was managing, when I could find the time I began to take occasional small art courses in the adult education section of a local community college. I relished the thrill of working with models and charcoal, standing in front of an easel, able for an hour to lose myself completely in the curve of a leg or the shape of a face, as the soft sounds of the charcoal against the paper whispered in my ear. (Continues...)
Excerpted from Healing into Possibility by Alison Bonds Shapiro. Copyright © 2009 Alison Bonds Shapiro. Excerpted by permission of H J Kramer and New World Libray.
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