The Lessons Of A Stroke
Alison Bonds Shapiro, author of "Healing Into Possibility: The Transformational Lessons of a Stroke" discusses how her stroke transformed her life in unexpected ways.
Alison Bonds Shapiro was 55 years old when she suffered two debilitating and nearly fatal strokes. In her book, Healing Into Possibility she chronicles her experience of learning that attitude, laughter, and taking responsibility were the keystones to healing. She wrote, "I have become far kinder, less ego driven, more open and teachable...The changes were a complete surprise. I had no idea that the strokes would prove to be the deepest life training I have ever gone through. When the strokes first happened I never imagined that they would be a profound gift – a turning point in my life that would lead me to possibilities beyond anything I dreamed. I thought, at first, they were an irreparable tragedy." Read on for more of how a stroke changed Ms. Shapiro's life.
Commitment: The title of your book is Healing Into Possibility: The Transformational Lessons of a Stroke. How did having a stroke transform and change you? Were these changes expected or a surprise?
Alison Bonds Shapiro: The strokes taught me, in an undeniable, embodied way, that there are things we can learn and use that really, really work when we need them. This knowledge is in my bones now. It is not theoretical. It’s a lived experience.
I have become far kinder, less ego driven, more open and teachable. I know, without a doubt, that I am part of a larger whole and that the contribution I make is enough. I have a kind of confidence in the innate wisdom and grace of the unfolding of the Universe that I lacked before.
The changes were a complete surprise. I had no idea that the strokes would prove to be the deepest life training I have ever gone through. When the strokes first happened I never imagined that they would be a profound gift – a turning point in my life that would lead me to possibilities beyond anything I dreamed. I thought, at first, they were an irreparable tragedy.
Commitment: How did experiencing a stroke turn out for you to be a story of transformation, instead of a tragedy? How did you turn this event into a positive life experience, instead of a debilitating event that could have destroyed your spirit?
Alison: There are many answers to that question. I was given so much that helped me through the experience.
At the heart of the answer, though, is that I found a reason to live. When I found that reason, I unearthed a determination to face what was extremely hard and a willingness to discover what would happen. Finding that reason for me, involved realizing that life is bigger than I am and that I had a duty to fulfill.
In the simplest, most direct form, I understood that I must find a way to face what had happened to me because I owed it to my sons to set an example that when life gets hard, you don’t give up. In a broader sense, with an understanding that developed over time, I came to see that this duty extended to all of life. I am a part of life. It is my privilege and responsibility to do the best I can with what I have been given. Many more people than just me are deeply affected by my choices. If I give up, I hurt a lot of people.
Commitment: How extensively did the stroke impact your body and what was the hardest, most challenging aspect of experiencing a stroke?
Alison: I was profoundly disabled. I was bilaterally affected, with my left side almost completely paralyzed and my right side wildly uncoordinated; my trunk muscles were unresponsive so I could not sit up; I could not swallow and had a feeding tube; my speech was heavily slurred; I had very little breath to support what speech I could make; my eyes would not focus; I could not walk; I could not urinate on my own and was catheterized; my face muscles were slack so that I had very little affect; and I would cry and laugh uncontrollably.
The hardest part was the sense of helplessness and despair.
This is part of the reason I wrote the book and the reason that I am making an inspirational DVD – to cut through that despair for other people. I found my way to a positive attitude, but we can do more to help other people find and cultivate that attitude and find it sooner.
Commitment: Can you share with us your eight principles of transformation that you came to understand as vital and important as you went through rehab?
Alison: The eight principles are:
One It’s the How - Not the What It’s not what happens to us that will define the course of our lives. Difficult things come into everyone’s life. It is how we deal with these difficulties that will make all the difference.
Two. Show Up. Being present and responsible in our own lives.
Three Open Your Heart Staying open to life, finding a reason to live, and being teachable.
Four Start From Where you Are Paying attention to what is really happening is the first step to working with it.
Five Be Skillful Doing our best in this present moment and being willing to learn how to be more skillful in the next
Six Practice Self Care Knowing that this body and this spirit are the only tools we will be given with which to make a life.
Seven Let Go Understanding that the world is bigger than we are
Eight Get out of the Way Remembering not to block the bounty that life brings us by deciding in advance what is possible.
These principles can be used in any circumstance, not just an illness or injury, in which we encounter a difficult challenge. They are simple and they work.
They work because our minds and bodies and our lives are directly affected by our intentional actions. The more we understand this, the better we are able to work with what comes to us.
When people with challenges hear about these principles, they tell me time and time again that they have renewed hope and tools that they can actually employ.
Commitment: What advice do you have for other stroke survivors who are trying to cope with the changes in their body brought upon by a stroke?
Alison: There are things I did not know that I wish I had known from the beginning. I spent weeks in despair. If I had known these four things, it would have alleviated my despair considerably:
Change is possible. We are not stuck the way we are. We can make changes.
Each of us the key to our own recovery. We are not helpless. What we do, how we work on our recoveries, has a profound affect on our ability to recover.
Change takes time; don’t give up. Brain recovery is a long process. It can take years. Giving up will stop recovery in its tracks.
Our lives are happening now. All along the recovery road, regardless of how much we have recovered at each point, we can and we do find ways to get on with our lives and make them worthwhile.
Commitment: You preface your book with this quote by Rachel Naomi Remen, "Every great loss demands that we choose life again." Can you elaborate on the meaning of this quote, and what these words mean to you personally?
Alison: Our greatest opportunity to make a difference in our own lives and those of the people we love may come from our hardest challenges. We honor life and those we love when we face our losses and go on to open our hearts and our lives more deeply.
We always have a choice and that choice is turn away from life or turn towards it. If we turn away, we set our fate in stone. We will suffer. We will despair. If we turn towards life we have chance of making something of ourselves and our experience that can be a benefit to the life around us.
Commitment: Chapter Three is titled "Taking Responsibility." You wrote, "Working in that gym, I was learning that nobody, but nobody was going to fix me." What role did taking responsibility have in your recovery process?
Alison: Brain recovery is the result of intentional effort. A part of the brain has been injured and killed off by the injury. New parts of the brain must be recruited to do the work of the injured parts. The brain will be more inclined to respond if we make concerted, intentional effort. Nobody else can make the effort on our behalf. This is not like healing from the flu or a broken leg. We can’t take 2 aspirin and just rest and hope to get significantly better.
As I worked in the gym and in my room I saw that every action I took could be an opportunity for rehabilitation if I made it so. I realized that if I didn’t make the effort, I would waste time and opportunity for healing.
It could be easy to not want to take responsibility, but if we don’t, who will? We are the only people who can make the intentional effort in our lives that is required. Brain injury recovery is an active process in which those of us who are injured are people with the most to gain or lose. If I didn’t take charge of myself and make the effort, nothing would happen and I would stay disabled.
Brain injury recovery is also a process that can take years. We are in this for the long haul. Realizing this and taking responsibility from the beginning helps begin the recovery and sustain it.
Commitment: How did your family and friends react to your stroke? Did your relationships change?
Alison: My family and most of my friends were extraordinary. I was very fortunate. Some people cannot handle the injury. Some of my friends could not. Those people who can’t handle the situation we love and forgive and let go. The others stand by us and we learn our way through the process of recovery together.
Our loved ones don’t generally know any more about how to do this than we do when we are all faced with the problem. Communication is vital. Even if our speech is affected we can find other ways to communicate. My beloved husband and my sons sat with me. We listened to one another. We were open about the challenges we were all facing.
My family and I had to learn new roles. I was dependent and had to learn to accept help. My family members took new responsibilities, but we did it together. It is vital that everyone’s feelings are honored and understood and that patience and kindness is practiced. “Thank you” goes a long way.
To family members I would suggest be patient, encourage and allow us to do as much as we can for ourselves and accept us the way we are right now. There is a real possibility that we can change but that change is more likely if we know that you accept us and love us despite our injuries. Once accepted and reassured, we can focus on the work we must do.
Commitment: In chapter seven, entitled "Cultivating Gratitude" you write about trying to find the blessings in your life. You wrote, "Now I was looking beyond self-centered despair from time to time, and reminding myself over and over again that blessings are indeed everywhere." What blessings did you unexpectedly find and how were you able to feel and experience gratitude during this difficult time?
Alison: I have a personal philosophy that I have had most of my adult life. I would always say that there are blessings to be found in every circumstance. At first, in my despair after the strokes, I could not see any blessings, but when I finally remembered to look, there they were.
Every day brought blessings. My wonderful family was an enormous series of blessings - my friends and neighbors, the staff at the rehab center, the knowledge and skills I had developed over my life that I could use in organizing my recovery - I could go on indefinitely.
Just a tiny example: I was often hungry after I could eat again and a friend brought me treats that I could eat with my recovering swallowing reflex – to be able to eat was itself an enormous blessing. She even brought me a bottle of olive oil that I could put on the food when it was dry and hard for me to swallow. What a gift that was.
Gratitude is one of the best medicines we have available. A positive attitude changes our body chemistry and gratitude is the fastest way to a positive attitude I have ever found. As soon as I began to look for the blessings and open my heart to them, I felt better and it was easier to concentrate on the hard work I needed to do. The gratitude reinforced itself. It was much easier to face the process when I remembered to be grateful than when I sat around nursing my despair.
Commitment: What is neuroplasticity and what role does it have in the recovery process?
Alison: Neuroplasticity is the brain’s ability to rewire itself. It is a wonderful and remarkable thing. Completely new parts of the brain can take on functions not previously performed by that area. If a part of the brain is injured a new part can be recruited to the work that the injured part can no longer do. The brain is constantly evaluating itself and we can harness that power through our actions and invite our brains to respond.
Studies of the brain clearly show this process. New, unexpected parts of the brain “light up” in response to rehabilitation efforts. This is what allows our brains to find new ways to operate our bodies after a stroke or other kind of brain injury.
Commitment: How did you deal with the emotions of anger and grief? What advice do you have for other stroke survivors dealing with these emotions?
Alison: Anger and grief are real and inevitable under the circumstances. There is loss. Loss triggers anger and grief. Any grieving process must be honored and worked with. I needed to allow space for the anger and the grief. Given space and acknowledgement these emotions have the opportunity to move through us. Pushing them away or holding onto them only intensifies them. I needed to feel them and let them come and go, understanding that these feelings are “normal” and to be expected. Talking with someone, getting help to deal with these feelings either from loving friends and/or professional therapists, can be very beneficial. Denying their existence only leads to trouble.
The anger over the loss of function is real. But the art is not to stay stuck in the anger. The art is to determine to move past it and make a life with what we have as we continue to work on our recoveries. It does not help to label our injuries as “hindrances”. That automatically categorizes them in a way that makes them “bad”. I still have spasticity in my left leg and foot. That means that I must actively pay attention to what my left foot is doing whenever I walk or move around. If I did not, I would fall. That’s a fact of my life. I can label it as “bad” or can see it, as I do, as a constant gift of walking meditation. If I label it as “bad”, bad is all I will see.
If I want to enjoy life, it is up to me to look for joy in every situation. Of course, It’s not easy when we have lost function, but we will find what we look for. And in an amazing and paradoxical way, if we look for joy and let joy in, that joy, that life force, helps us recover.
Commitment: You wrote, "hospitals can provide great sources of humor." Can you explain this a bit, and how did you bring laughter into your life during this time?
Alison: Much of what happened to me in the hospital that was funny is not something I can repeat in a way that is appropriately polite for an interview, but it was funny, sometimes very funny – sometimes wonderful absurd.
My oldest son, Fletcher, who has a terrific sense of humor, got me laughing early. He was not afraid to find the humor in things. Finding the humor doesn’t mean we are laughing at other people’s misery or even at our own misery. We laugh at the absurdity that life brings.
Laughing lowers stress. It helps us focus. When we share a laugh, we share something essential with one another. When we feel stressed and overwhelmed it can help enormously to take a break and laugh for a while. The laughter doesn’t make the problem go away but it makes it easier to face.
I could not easily watch TV, but I could listen to tapes and some of what Fletcher gave me to play on my little tape recorder was pretty humorous. To listen to a story of Bill Bryson hiking the Appalachian trail and laugh with him, gave me wonderful moments when I could let go and remember that life has humor inextricably mixed into it.
Commitment: What are some ways a person recovering from an illness can minimize the stressors in their life?
Alison: Stressors come in many forms.
We tend to stress ourselves with worry. Will I get better? How will I cope? What will my family do? The worry distracts us from our recovery efforts. It uses up essential energy when there is not much to spare. It affects our bodies. In short, it doesn’t help.
What is the alternative to worry? It is to concentrate on what is happening now. We cannot know how much better we will get in advance. We can only discover, each day, what we can do that day that we could not do before, no matter how small it is. That’s the recovery process. The more we remind ourselves to work today and let tomorrow bring what it brings, the more we can use ourselves to maximize our recoveries and reduce the strain we experience.
Kindness and patience also help. We increase the stress in our lives by venting our frustrations on the people around us. That just makes a difficult situation worse. If we do that, we feel guilty. Our loved ones feel bad. Everything becomes more difficult. If we remember to be kind and patient, we experience less stress.
Commitment: You decided during your recovery that you would make it a point to practice lovingkindness. You wrote, "I began an active, intentional practice of treating every person I met in the rehab center with kindness and love, including the night nurse who wouldn't give me the cream..." How did this decision to practice lovingkindness impact your recovery and your spirit?
Alison: The practice of lovingkindness had two immediate impacts on my recovery. The first is that it helped to alleviate my feelings of helplessness. Even though I could not do much, I could practice lovingkindness. The way I treated other people impacted them directly. I could see it happen. When I was kind I eased their burden. It helped them. I made a difference in their day. I saw that I was not powerless and that what I did mattered.
The second thing it did was open my heart and make me teachable. When I began to reach out I become less self-centered, less pre-occupied with my own injuries. I began to open my heart and then my mind to other possibilities and see that I could find a way to make a life. My therapists had an easier time working with me. I was open to what they had to tell me. I was not defended and I could “hear” them and take in their teaching.
Commitment: In chapter nine, titled "Life Is Happening Now" you wrote, "Living around limitations starts with the question: 'how can I do what will bring me joy with what I have?" How did realizing that you were faced with the theme of living with what you had impact your journey to recovery?
Alison: It’s really as simple as this: When I focus on my limitations, that’s all I see and I stay limited. When I say, I’ll make a life “despite” my limitations, I build in an automatic decision that somehow my life will be less.
When I decide I will live and live fully around my limitations I acknowledge that life is way bigger than I am. Even if I were exactly like I was before the strokes (and even if I were 20 years younger, stronger, more able) I could not begin to take in all that life has to offer – not even a fraction of it.
I have to power to choose to take in as much of life as I can in whatever condition I find myself or spend my time mourning for what I can’t have. That’s my choice. Living around my limitations means choosing life. I can decide to stop growing, stop choosing life, or I can decide to grow stronger and more creative.
I decided to choose life and I have found more abundance than I ever thought I would experience and I know that I have just begun to explore what is possible.
Commitment: Why is it important that stroke survivors keep believing change is possible? How did you avoid feeling stuck?
Alison: If we believe that change is possible, we will try and keep on trying to learn to use our bodies again and rewire our brains. If we don’t try, we stay stuck. The truth is nobody knows how much any of us can recover. We can only find that out by trying.
The body will make habits out of the disability if we don’t challenge those habits as they form. Knowing that change is possible and knowing that the body will make a habit of the disability if we don’t challenge it, keeps us focused and working. Stroke recovery can take years. I know people who continue to make changes many years after their strokes. If they didn’t believe that change is possible they would not keep improving.
In order not to feel stuck, I would try all kinds of different approaches to rebuilding the connection between my brain and body. If one activity didn’t produce results, I would do a different one. I would walk on the mountain, move to music, pet the cat - whatever new thing I could find.
Today is all I have. Tomorrow is just a potential. I can only work in this moment. And if I pay attention, I can discover that there are interesting challenges right in front of me. Everything we do, from brushing our teeth, to climbing a stair is an opportunity to work for change.
As long as I focused on the small changes I could see change in action. That encouraged me. It took courage to let go of the end result and work without knowing if I would ever achieve it, but I knew I had a good chance of achieving the next small goal and so that is what I focused on.
Commitment: What role did creativity play in your recovery? How did you find your own unique creative path to recovery, and what advice do you have for others who would like to find their own creative path to recovery?
Alison: Creativity is an answer to limitations. The light bulb was invented because sitting in the dark, or using an oil lamp limited the amount of time in a day we could use.
We are taught that creativity is something only inventors and artists have, but that is not true. Everything we do is a creative act. We each have our unique responses to life and use our creative ability every day. Finding a new way to cook a meal, a new route to a destination, a new color combination to wear – all these are creative acts.
I had lots of limitations after the strokes and I still have some today. At first, I couldn’t do so many things the way I had done them before, but I discovered that I could figure out another way to get them done. There are even ways to tie shoes one-handed. Some of these things we are taught by our therapists and then our therapists become our inspiration to figure out things on our own.
There is pleasure in creativity, in a problem solved. Whenever I would find a way to do something that I couldn’t do the way I used to, I felt a sense of achievement. It was an incentive to keep on trying.
To find a creative path, we need to be willing to not know the answers in advance. Letting go of certainty and being willing to not know until an answer has time to form is very helpful. And we can remember that we don’t have to be “right” from the beginning. We don’t discover things until we try them and see what works and what doesn’t.
Commitment: How does 'expecting that progress will be uneven' help a person through recovery?
Alison: Recovery doesn’t happen if we give up. That’s abundantly clear. An expectation that recovery has to be smooth will lead to disappointment and a tendency to stop trying. Recovery is not smooth. Sometimes it leaps ahead; sometimes it appears to fall back; sometimes the changes are so incremental it’s hard to see them; and sometimes we plateau and don’t change for a while. That’s the way it works. Knowing this allows us to be patient with every stage of our recoveries and be persistent through the down times.
Commitment: What good things ultimately came out of your stroke? How are you doing now? What has this whole experience taught you about life?
Alison: The good things that have come out my experience are immeasurable and still flowering in every moment. My life keeps getting richer. I am continually amazed by my good fortune.
I have learned how to work with any difficult situation and find possibilities within it. I am not saying it’s easy. Life throws us tough challenges, but I live with the certainty, the lived experience, that if I apply these eight principles, I can work my way through a difficulty and actually watch it transform in ways I could not have imagined.
I am, as I like to say “more empowered than I have ever been”. I still have some vestiges of physical disability, but my recovery is remarkable, far beyond what anyone thought possible at the beginning. The opportunities I have to be effective and useful are greater than I ever thought I would find in my life. The experience has taught me that life is abundant – there is more joy and satisfaction available than I ever knew. I am infinitely grateful.
To purchase Healing Into Possibility click here.
About the Author: Alison Bonds Shapiro works with stroke survivors and their families at an HMO in Northern California. She also serves as an advisor to a small nonprofit dedicated to stroke survivors. She lives in Mill Valley, California. Visit www.healingintopossibility.com
