Grieving the Old Self, Embracing the New
At least part of our identity is defined by doing the things that make us feel good about ourselves. For some that may mean being the family breadwinner or the glue that holds the family together. For others, it may mean expressing their creativity, nurturing social relationships or making a difference in their community. Often, however, stroke changes a survivor’s ability to do those things, and the loss of what you personally, dearly valued in yourself can be very challenging.
Psychologist Elizabeth Kubler-Ross conceived of the stages of dying in her 1969 book On Death and Dying. She and David Kessler later adapted these to grief in their 2005 book On Grief and Grieving. Survivor Rachel Scanlon Henry, who came across the stages model years after her stroke, wonders if her own processes of dealing with her stroke might have been better supported if she’d been conscious of the stages as she experienced them.
Neuropsychologist Monique Tremaine and psychologist Barry Jacobs have theories on the value of the model for recovering survivors.
But before we hear from our experts, survivor Rachel Scanlon Henry of Worcester, Massachusetts, shares her perspective.
Unwrapping the Gift of Stroke
RACHEL SCANLON HENRY
Today that’s a good thing, but it wasn’t 14 years ago. Stroke silenced my body and took total control of my life. In an instant, I was no longer friends with my body. It had betrayed me. I no longer trusted my body. I was my own enemy. Full stop. I didn’t know how to live a day beyond that.
I found a way up and out. But it took time — around three years post-stroke. My recovery followed an already known process: the Stages of Grief developed by Elizabeth Kubler-Ross. Perhaps you know the five stages: Denial, Anger, Bargaining, Depression and Acceptance. I saw this model a couple years ago, and it was amazing to me how I could overlay these stages onto my journey. It showed me where I had been and made me feel normal. I had grieved because I had lost myself. It was my biggest change/death ever, and it took about three years after my stroke to begin to embrace life again. I see the stages clearly now, and they help. Imagine if a stroke survivor could learn about this early on? It could help! It certainly couldn’t hurt.
DENIAL — In this first stage people often believe the diagnosis is somehow mistaken, and cling to a false, preferable reality. Yup. That was me.
I worked to fulfill all my therapists’ goals. I was so busy working on getting better and back, I didn’t sit with one undeniable fact: Rachel had a very big stroke.
I wanted to make time go backwards and ERASE the stroke. I see that now. I was trying to change history and recreate reality with no stroke. I couldn’t comprehend, let alone accept, the magnitude of change that had been forced upon me at 10:10 a.m. on April 4, 2003, when I had my stroke. My focus was the minutiae of goals set by my docs: Could I walk to the bathroom, brush my hair and teeth, bathe, do stairs? Could I tolerate a feeding tube now and would I swallow again? The physical goals of each doctor, neurologist, speech pathologist, OT or PT were my goals.
It makes sense to fix broken parts so you can use them again. Injuries change your daily routine, are painful and inconvenient — even disabling for a time. A full recovery is expected and possible for many health challenges. We come back. But stroke is different and goes way beyond the physical. So, we turn to anger.
ANGER –- When the individual recognizes that denial cannot continue, they become frustrated. “Why me? It’s not fair!” “How can this happen to me?” “Who is to blame?” “Why would this happen?” This is the language of this stage.
That was me. Every negative unhealthy behavior was mine as I whined and played the blame game. I couldn’t fit back into my old life, even as my body became significantly more “normal.” I just couldn’t fit. I tried, but I was different and I couldn’t handle it, so I raged. Stroke is different, I believe. Stroke is a brain attack. My brain changed. And that is key.
The broken arm heals and returns to use. But a break in your brain, that change is deep and goes beyond physical to emotional and spiritual. I thought I was a standalone pillar, but come to find out I’m really a three-legged stool supported physically, emotionally and spiritually. Stroke took all three out from under me. I got up fighting, because that’s what I do, and the body healed. I did what I knew. But I couldn’t heal what I didn’t understand. That made me angrier. The fight never ended. All I had left was to bargain for peace.
BARGAINING -– In the third stage, the individual hopes to avoid a cause of grief and negotiates, or seeks compromise. I really tried to “fake it and act as if” I were the old Rachel in the hope of returning to “normal.” I bargained with a God I hated: to remove the slurred speech, stop the spasms, bring back feeling and take away my fear. Stroke was a personal attack from a God I didn’t believe in. Stroke is not personal. I know that now. But then I hoped, maybe we could all forget about this stroke business, and life could go back to normal.
I tried to “act as if” I wasn’t terrified every waking second that I’d have another stroke. I tried to “act as if” my contorted face and slurred speech weren’t really humiliating. I tried to “act as if” I had a clue who I was and was okay with facing my own mortality head on. I mean, after all I was alive and doing great. Right?
Wrong. I was forever changed. Life is constant change, and I have to be able to meet change with grace and acceptance or I have no peace. The only power I have is over my responses. I can choose to respond to what happens to me in a positive, loving way, or react with negativity, self-loathing and rage. Knowing that is a huge blessing. But back then, after anger and bargaining failed to make me normal, I moved into a crippling depression.
DEPRESSION — “I’m so sad, why bother with anything?” “The big stroke is coming, so what’s the point?” “I miss my old life, why go on?” Facing their own mortality, the individual despairs and then retreats and isolates.
That’s where I lived. I stopped praying for a normal body and mind. I prayed that I wouldn’t wake up. Since I couldn’t feel normal, why couldn’t I just die? That was my unspoken mantra. God forbid I open my mouth and tell people I felt that way. Not me. I was utterly unteachable. The irony of that statement for this now 21-year veteran teacher is not lost on me. I lived wanting to die for a long time. But I didn’t die. I had nowhere to go but up. And that “up” was acceptance.
Rachel with son Jason and husband Tim
ACCEPTANCE — “It’s going to be okay.” “I can’t fight it; I can prepare for it.” In this stage, the individual makes peace with their mortality, the unknown future, their loss and the tragedy, and becomes calm and emotionally stable. Kubler-Ross expanded her model to include events other than death such as the onset of a disease or chronic illness. That’s me. That’s stroke. That helps.
Identifying with the stages of grief means that I can learn to live a joyful life with my stroke, accepting reality. I become teachable. I grieve the loss of the Rachel before my stroke. It was the biggest loss in my life. I lost me. But I have found a new me. Rachel now needs a lot of help and loves to help others. This is my truth, and I practice it daily. When I don’t, my stroke teaches me more lessons in fatigue and pain until I accept my reality, my changes and live life right.
Part of my practice of accepting life on life’s terms comes from my participation in many stroke discussions and following research and policy geared to survivors, caregivers, the medical community and policymakers. I’ve bristled at one phrase that is tossed around: the idea of “getting back” to who I was before my stroke implies a stagnant mindset.
What I mean is that, in early stroke recovery, it was important to “get back” every physical action that stroke stole or dulled. I wanted strength, mobility and flexibility. And I “got back”: I was physically able to carry and deliver a healthy, miracle son at six years post-stroke. That is “getting back” and going beyond. But stroke affects more than the physical self and so with me. Spiritually and emotionally I was changed in the moment of my stroke and continue to change in significant ways. “Getting back” defies the passing of time or the magnitude of change of which I am capable.
In the field of teaching, the “growth mindset” is big right now. We look for how much growth a student makes over the year according to different measures. We help children be more and know more than they did yesterday and last year. Growth matters for children.
I guess that model resonates with me as a stroke survivor. Life is ever changing and so much bigger than Rachel. I am just not very powerful or important. Kids know that. Stroke survivors learn that. We lose all illusion of power and control.
If we can reframe that as a gift and relearn the idea of living each day, finding joy and being a part of our world, giving our gifts, then we have peace. Life means something. If we can accept our stroke and our change, we can move forward with joy in life. It is truly impossible to live life in the past. And with stroke, my past me was very different than the me after my stroke. I have to live life today. That is all I have. And that is a gift.
For My Fellow Survivors
Rachel and her son Jason engage in an epic spatula duel
“I did not survive a stroke to be miserable.”
Stroke does not erase us. Survivors are stronger than stroke, by definition. Peace takes time. It took me about three years after my stroke. Three years I spent in denial, anger, bargaining and depression of what stroke did to me. I begged God, my family and doctors to answer every question I talk about in this article and many more. But I never heard what I wanted to hear.
Things changed when the question became, “Why not me have a stroke? And why was I saved? And what was I saved for?” Simple, but not easy. I don’t know what is around the corner for me, and with practice, I don’t waste time asking. But I do know, I DID NOT SURVIVE A STROKE TO BE MISERABLE. Been there, so done that.
For me stroke recovery is a lifelong journey. I need help and guidance. Recognizing myself in the stages of grief helped me make sense of myself after the fact. It reduced despair, gave me hope and showed me I was not alone. Imagine knowing about the stages as you are in them and knowing it is normal to feel this way and you will get better. Imagine. You don’t have to bite off the whole idea at once. Take a baby step. Consider the possibility of joy, just for today.
One good day is a priceless gift, and stroke survivors know that better than anybody! We rock! When survivors tell me they “want it back,” I wonder, what do they “want back” and what is “the end” they are working toward? We never arrive at the end. Life is not stagnant. I set goals and accomplish many. Then I set new goals and try new things and am ever aware that whenever I make Plan A, life shows me Plan B, C, D, all the way to Z. You have to laugh and go with it. I GET to laugh and go for the ride. That is a gift.
Experts speak to stroke survival and the stages of grief.
Monique Tremaine, Ph.D.
“I think the Kubler-Ross model is an invaluable tool for helping patients gain perspective on what they’re going through — their emotional journey — and to realize that they are not alone in their experience,” said neuropsychologist Monique Tremaine, Ph.D., director of psychology and neuropsychology services at Kessler Institute of Rehabilitation in West Orange, New Jersey. “Survivors readily identify with the stages, which they will move forward and backward through with changing levels of recovery and life circumstances.”
In the Kubler-Ross model, denial is a psychological construct and can be conscious or unconscious. In survivors, denial can also be caused by the stroke itself which is generally referred to as loss of awareness. “The brain may fail to recognize that there has been a change and that’s not a psychological denial. That’s an organic denial,” Tremaine said. “You can have organic denial, psychological denial and you can have both.” Stroke may also cause cognitive problems such as memory or difficulty planning or sequencing that affect a survivor’s ability to process the emotional consequences of a stroke.
Another form of denial that is particularly troublesome is the tendency to minimize barriers in the rehabilitation setting by believing that once they return to the home environment and get a good night’s rest, everything will be fine. “The shame in that is, while in acute rehabilitation they are receiving the most concentrated level of therapy and expertise available. Believing that all will be well can interfere with their ability to make the most of their rehabilitation. Often their return home is met with unanticipated challenges with much more limited support in navigating them,” she said.
Anger, the second stage, often appears acutely, reappearing throughout the stages as the survivor processes their experience. “The stages aren’t categorically discrete, they are not sequential steps,” Tremaine said. Anger can be directed at the self, as the stroke may be the result of poor health habits. It may be directed at family as roles change and a survivor feels less independent, or at the medical community for being unable to fix them. Anger can be at God.
Bargaining, the next stage, is similar. It may occur as a survivor starts to realize his or her deficits that prevent a return to their prior lifestyle. “They think back on past lifestyle habits that weren’t so healthy. They promise to improve if this will just stop. They bargain to control habits. Some may also view recovery as a matter of will, if they just push harder, they will recover faster,” Tremaine said.
Depression, the fourth stage, much like denial, has two distinct categories when it comes to stroke. Organic depression can be a direct result of the brain injury and generally appears immediately following the stroke. Reactive depression can surface weeks or months after the acute injury. “This is what I see more of in my practice, and it is often the result of the patient not having the level of recovery he or she expected. Further, many survivors become isolated due to accessibility barriers, such as inability to drive. Communication issues and cognitive impairment can cause a survivor to withdraw from relationships. They may also feel substantial guilt for lifestyle habits that may have contributed to their condition. They may be suffering financially, being unable to return to work. Their depression is justified, and should be validated and treated.”
Grieving stroke is unique because it affects individuals on so many levels — from the loss of mobility and function to the inability to speak to the frustration and uncertainly of what lies ahead. “As a result, the grief process is different than when someone close to you passes. Both are psychologically difficult but with grief for a lost loved one you can return to work. You can still drive. You still have the mentation to be able to pay your bills. It’s a much more complex experience recovering from a stroke because you’re affected physically, cognitively, emotionally, behaviorally and even financially.”
Acceptance is the fifth and final stage. A few may not achieve this stage, and most will wax and wane through various forms of acceptance with frequency. Many people confuse “acceptance” with “giving up.” “To a lot of people, acceptance means being resigned to their situation, with no hope of return to the former self,” she said. “Striking a balance between reality and hope can be difficult, and acceptance should be discussed in terms of the here and now. Those can be very difficult conversations to have, and appropriate timing is critical. How easily they move toward acceptance depends on the nature of their deficits, the level of awareness they have, the extent to which life has changed, and whether they’re able to positively reconcile the ‘new self’ with the ‘former self’ to return the survivor to a unified whole.
“It’s important to remember that every survivor will progress at his or her own pace. For some people, acceptance of this new identity can take months, but for others, it may take years.
“In my experience in Kessler’s outpatient cognitive rehabilitation program, patients often insist that they must return to who they were prior to injury in order to consider themselves ‘recovered.’ Recovery, however, never involves return to a former self; as the experience of having had a stroke will necessarily change a person, even if they return to their pre-injury baseline. We cannot be who we were after experiencing a hardship. It changes us, sometimes for the better. Integrating change, therefore, is the essence of acceptance.”
Barry Jacobs, Psy.D.
“I find the stages of grief model a very nice description of some of the typical responses people have to loss,” said psychologist Barry Jacobs, Psy.D., director of behavioral sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, Pennsylvania, and co-author of AARP Meditations for Caregivers. “But as a therapeutic model, it is lacking. Different people at various times will be in denial and then they’ll be sad, then maybe they’ll go back to denial. People jump from one stage to another. I think people who have suffered a stroke do go through a certain amount of denial and often have anger and sadness, but the stages are not as well-ordered as the model suggests.”
The stages are not sequential steps, and not everyone makes all the steps. Some people only feel anger, never sadness; others stay in denial or never get to acceptance. “People have their own way of grieving over time, and it’s much more individual,” he said.
Acceptance of the “new normal” is where therapists hope their patients finally settle, but that is often a long process. “Many people do not get to acceptance and spend the rest of their lives pining for who they were and resisting the acceptance of their current limitations,” Jacobs said. “This can have an unfortunate impact on rehab, if it causes the person not to work as hard at the beginning, when therapy is most effective. Or they anticipate that they will keep improving at a fast pace and become disheartened when they plateau.”
Plateauing is a common crisis point for survivors. “A typical conversation I would have with stroke patients at this point in their recovery was ‘Your life before was a full loaf, and unfortunately your capabilities now are more of a half loaf. Can you accept having a half loaf and live as well as you can with a half loaf?’” Jacobs said. “And I literally would have people say ‘If I cannot have my life as a full loaf, I don’t want to live or I don’t want to even try.’ And it would take a long time to get them to accept that they still have capabilities that enable them to do things that are important, that they still could live a life that they enjoy, even if who they are is going to be different.”
Another concern Jacobs has with the Kubler- Ross model is that it doesn’t include shame. “In my experience that’s where survivors really get stuck and where they have trouble with acceptance,” he said. “They feel ashamed if they have a facial droop or difficulty walking or inability to use one hand the way they did before. They don’t feel pride in having overcome and recovered as much as they have. They feel ashamed that they’re somehow defective and that shame really is an impediment to people trying as hard as they can in accepting who they now are.”
According to Jacobs our sense of self is based on our familiarity with what we can do, how we speak and how we relate to people. “When those capabilities are diminished, people don’t recognize themselves for who they are,” Jacobs said. For instance, a survivor sees herself in a mirror. It brings home that she is now a bent-over person on a walker or that she has a weak arm. It doesn’t align with her mental image as being fit and hearty. “That sense of self against which everybody compares themselves in their stroke recovery has a tremendous power.”
A stroke undermines that sense of self and brings up a plethora of feelings. “Survivors have to really consider what is their essence,” he said. “Is our essence that we are someone who can walk across the room without much effort or is our essence something that has to do with who we are, our character, our personality, things which hopefully stroke doesn’t affect. People still love us for who we are even if we can’t walk without a walker or even if we’re wheelchair bound. Our essence is not our physical capabilities or ability to speak as quickly as we might have before.”
Jacobs acknowledges that not all survivors get to acceptance of whom they have become, but there is a cost to that. He suggests that they are unlikely to try things that stretch their limitations because failure would be further evidence that they aren’t who they used to be.
“Here is where the idea of a ‘new normal’ is very helpful,” he said. “There is a loss of capabilities of the old self, and that causes survivors to evaluate what has been retained and also what’s been learned. I’ve heard many survivors over the years say stroke is devastating in many respects but having gone through the experience, people genuinely learn things about themselves that they took for granted before. They learn about their family’s love. They learn things which may not have been as evident to them if not for the crisis that the stroke imposed on them.”
One notion that Jacobs shares with survivors is that all people change and lose capabilities as we age; all stroke has done is change that timeline. What would have happened over decades happens overnight.
And a word for caregivers and family members: “I think the most important thing for them is to love their survivors for who they are at this moment and try to convince the survivor that who they are in their core, in their essence, is the same even if their physical capabilities are different and to let the survivor know that they’re still loved and valued, and that is not dependent on a certain image or set of capabilities.”