My name is Alison Bonds Shapiro and I have a story about stories to tell.
Although I have spent most of my professional career in the business world, I have always had a passion for painting and drawing. Ever since I was a child, I’ve dreamed about illustrating a children’s book. With my own children grown and out of the house, at last I had the chance to concentrate on reaching for that dream. And while I was still working I began to take some courses in an art college.
Then the day arrived when the publisher called and my dream came true. “Yes,” she said. “I will take a chance on you. You can illustrate this story.” When I hung up the phone, I was so excited that by the time I got upstairs to tell my husband about the call I was screaming with delight.
I set to work, learning all the things I needed to know and do, submitting drawings, designs and painting samples to the publisher and earning approvals. I was on a roll. By the time I began the children’s book, I had studied a fair amount and developed some skill. This is a drawing I did of a neighbor while I was working on the book.
Then in May of 2002, at the age of fifty-five, with three fully painted illustrations completed out of total of seventeen, without warning and with no known risk factors, I had two brain stem strokes twenty-four hours apart.
One side of me was paralyzed and where I wasn’t paralyzed I was wildly uncoordinated. I was unable to walk, sit up, swallow, focus my eyes, control my emotional expression, or control my bladder and bowels and my speech was so slurred it was very difficult to understand me. Within one twenty-four hour period, without warning, my life was completely upended. Those strokes pulled me out of my dream and set me down in the hospital and ultimately into in-patient rehabilitation.
Near the end of my stay in the rehab hospital, just before I was scheduled to go home, I decided I had to find the courage to know how badly my ability to draw had been affected. All alone, sitting by my bed, I struggled to get the pad and paper out of the dresser and began to draw. And this is the very best that I could do.
My heart broke. When I saw what I had drawn, I sat in my wheelchair and I cried. I did not know if I would ever walk normally again, much less paint and draw well enough to illustrate a book. On that day I gave up my dream.
I was confused and bewildered. I had lost my stories of who I was and what I could be. All the stories I told myself about who I had been as business consultant, as an artist, as a wife, as a mother, as a grandmother and as a friend no longer worked. They were broken. I could not tell myself even the simplest story about how I would get dressed. I could not dress myself.
Today few people who look at me can begin to imagine how profoundly injured I was even when I tell them. How is this possible? How did I get from that lost dream, from where I was, to where I am now?
When I was injured and in the hospital, nobody talked to me about my condition. All I saw was the fear on my family’s faces. All I heard was the clacking of the machine pushing food down the feeding tube inserted through my nose into my stomach. All the interactions I experienced with my medical support were kind, courteous, neutral and limited to the individual task at hand.
Although I was conscious and rational, it took several days before anyone told me that I had suffered two deadly strokes. Even when I was told this limited information nobody talked to me about my condition. I had no idea that anyone ever went on to make a satisfying life post stroke. I had no idea that anyone ever recovered function. I had no idea that what I did from the moment I was injured mattered. Not knowing what I could do to help myself, I told myself a story of misery and despair and I wished myself dead.
Stroke or other neurological injury is the most participative form of healing that I have ever seen. Not engaging, wishing one’s self dead and doing nothing, is the ultimate counterproductive choice when a person wants to recover. But I did not know this then. I stayed in that despair for weeks until two separate realizations made their way into my mind and heart.
Since I could not read, my family had given me audio books. One was a book called My Grandfather’s Blessings by Dr. Rachel Naomi Remen. In this book Dr. Remen tells her own story of illness, suffering and perseverance. Some years before my strokes, I had met Dr. Remen. I knew her work and admired her greatly.
As I listened to her story I came to recognize that some people find the courage to face great difficulty. I did not yet have a reason for me to be one of those people but I knew that Dr. Remen had done this. My first realization was that it is possible to face hardship and persevere.
The second, and most important of the two realizations came when I finally understood that what I did mattered to someone else. My sons, my beloved sons, had stayed beside me every minute of every day from the time I was injured until it finally became apparent, after several very anxious days, that I had stabilized and would not die.
Their choice to sit beside me in shifts, never leaving me alone, had affected me profoundly. They showed me in the most tangible way possible that they loved me.
One night in the rehab center, several weeks after the strokes, I was lying in my bed thinking. As I lay there, I began to reflect on my wonder at my sons’ love for me, how faithfully they had stood by me. Before the strokes, it had never occurred to me that they could love me so much. As I remembered what they had done and felt my gratitude for them, I came to see that regardless of how despairing, full of grief and terrified I was, as their mother I owed them a responsibility. I began to realize that I had a job to do.
It was my job to show my sons that when life got unbearably tough, you found a way to bear it. I had to take on my disability and make a life for myself for their sakes. Giving up was not a lesson that I could to teach to those two beautiful men I am so proud to call my sons.
When I understood this, I found purpose. I found meaning. When I found meaning and purpose, I discovered in me the will to engage. Maybe I would never recover. I could not know. But whatever happened I knew that I had to try.
And so I began to re-create my stories of myself. I had little idea about what many of my stories might be, like what kind of grandmother I would now make. I had a grandson born just 6 weeks before my strokes and I could not hold him, much less care for him. But I knew what kind of stroke survivor I could be. I would be someone who engaged and did her very best. That new story changed everything.
I am a problem solver. Once I engaged, I used every skill I had ever learned to take on the tasks of stroke recovery. I studied. I learned. I used everything I was and knew: the artist in me, the business consultant in me, the student of psychology and anthropology in me, and most of all I used my years of mindfulness training to pay attention and turn towards what had to be done.
What people see in me today is the result of creating a new story, a story of meaning and purpose, and using that story to fuel the tremendous effort that recovering from and living with a stroke takes. Am I fully recovered? No, not completely. I have residual issues that people may not see. Have I built a rich and satisfying life regardless? Without any shadow of a doubt.
I now teach others, survivors of neurological injury and illness, their caregivers and their care professionals. I teach specific recovery skills. I teach the power of re-framing our stories. I teach hope. I do not want other people to suffer the unnecessary despair and bewilderment that I suffered. I want other people to know as soon as possible after their injuries how to engage themselves in the work that needs to be done and what they can do to make a difference in what comes next.
What I have come to understand is that it is not what happens to us that matters. Difficult times come to all of us sooner or later. What makes all the difference is how we deal with the challenges of our lives. How we meet those challenges, how we face them and work with them, has the power to transform us and lead us to possibilities we never imagined we would find. The stories we tell ourselves matter.
And, by the way, three years after those strokes, that children’s book was completed and published. The illustrations are not in order. If you look at the seventeen paintings that comprise the book you will not know which are the three I finished before the strokes and which are the fourteen I painted afterwards, unless I tell you.
See also this video of Allison Shapiro, for a powerful approach for brain injury/stroke recovery. Empowering stroke survivors, their caregivers and healthcare providers