The following article was originally published by the American Stroke Association on their website on January 6, 2021.
After a stroke, people often ask, “How’s your recovery going?”
What exactly do they mean?
If you are a survivor in recovery, what does this question mean to you?
Many years after Debra’s stroke, we heard people asking how she was regaining the skills she lost from her stroke. They may relate to their walking, their use of their right hand, their speech – or all of them. In other words, “How’s your rehabilitation going?”
To be honest, once we were “out of the woods” and Debra was in stable health, the most important thing – for both of us – was the ability to recover. Recovery really meant rehab.
By the time Debra was about three years into her recovery and had spent most of her time in rehab, she had made incredible strides. But she was far from able to regain everything she had lost. She still walked with a significant limp, had no functional use of her right hand, and as a result still suffered from aphasia. Her speech returned, but slowly and incompletely. Did that mean her recovery had “failed” so far? Or maybe was an incomplete recovery? Do you have to go back exactly where you started for a successful recovery? Of course we hope not.
Two trips in recovery
Table of contents
What is rest? We have come to believe that it is the combination of rehabilitation AND reconstruction. rebuild identity. Modification measures with appropriate adjustment. rebuilding a worthwhile life. We believe recovery is a physical and emotional journey at the same time. It is an effort to regain lost skills and an effort to rebuild a strong sense of self and a life of meaning, purpose, and joy. In our experience and that of many people we have interviewed and worked with, the word recovery often refers to the physical journey. We believe that the emotional journey is just as important and that more attention and resources are needed to support this part of the journey.
Source: Illustration by Steve Zuckerman
It is interesting to compare the recovery language surrounding stroke to that surrounding the loss of a loved one. We talk about this in Identity Theft Related to Grief and Debra’s unexpected loss of her father 25 years ago. Of course, recovery from this type of loss cannot be measured by the ability to regain one’s pre-loss state. It is merely an emotional journey that is judged on a person’s ability to overcome grief and come back to life in the face of grief. This is how the medical community treats it and offers resources to help. This emotional recovery journey is just as important after a stroke.
Looking back on our experience, the system we navigated told us that recovery = rehabilitation. Almost all of the signals we’ve received from the medical system have defined recovery in this way—either explicitly or implicitly. We think this does a great disservice to anyone who has been affected by a stroke.
Embrace the emotional journey
Debra’s academic background and her decision to write a book on aphasia put us on the emotional journey that no one told us about. Luckily, we came across it and then realized its crucial importance. We embraced it in the five years it took to write the book and launched Stroke Onward as part of our ongoing process to rebuild our identities and create lives with meaning.
Hopefully we can help others by putting the spotlight on the issues, working on resource development, and working with others to change the system we’re missing.
The parallel paths of physical and emotional recovery are mutually reinforcing. Many survivors talk about how the hard work of rehab is part of what helps them recover emotionally, even if it’s too slow and incomplete.
Physiotherapist Pam Inbar-Hansen
and Debra Meyerson
Conversely, physical therapists, occupational therapists, and speech therapists have told us that sessions are much more productive when survivors are in “good emotional space.”
“Therapy is much more effective when survivors see it as part of the process of rebuilding their lives, even if they don’t get all their abilities back,” said Pam Inbar-Hansen, a physical therapist with whom we have worked extensively. “This allows them to focus on the process and not the outcome, regaining 100% of their abilities, an outcome that is always desired but most of the time is not possible.”
And just as important, the two paths converge critically. The same therapists who technically focus on supporting the physical journey can also provide important support on the emotional journey. Pam certainly did that for us, as did many others. And just living your life can be great therapy indeed. This is the basis of the Life Participation Approach to Aphasia. In this case, 1+1 really equals 3.
When to focus on the emotional journey
As Stroke Onward works with caregivers to understand what resources would be most helpful to support the emotional journey and how to manage them, we also wrestle with when they would be most helpful.
Debra spent three years focusing solely on regaining ability. She wanted her old life back. Margaret Dougherty, an occupational therapist who worked with Deb relatively early in her recovery, emphasizes the importance of timing with emotional recovery.
“If I had suggested that you think about rebuilding your identity and a different life when we worked together, I would have ended up with a black eye, a bloody nose, or both,” she said. Debra wasn’t ready to hear it yet.
Conversely, Deirdre Warren, a survivor we wrote about in Identity Theft: Rediscovering Ourselves after Stroke, recognized and accepted the need to start a new life even as she entered therapy in the first few months after her stroke. Everyone must decide for themselves how much time and energy to devote to rehabilitation and how much to adapt and rebuild. The care system should make people more accessible to critical resources that are offered when survivors and care partners are ready for them.
“While working in inpatient rehab last Saturday, a patient with aphasia asked me, ‘When will I be myself again?’ After reading and discussing identity theft with book group members and medical students, I found myself in a conversation about identity , loss and change overthrown. My patient then spent most of the session talking about her background, family, hobbies and interests. At the end of the session she said, “I AM still myself.”
Sophia Kanenwisher, Speech Language Pathologist and Book Group Clinical Supervisor
What can change
Our previous work through Stroke Onward confirms our belief that the emotional journey really matters – and gets little attention. One of our first projects is creating book discussion guides on identity theft. The goal is to make it easier for people to effectively immerse themselves in the issues surrounding rebuilding their identity and living a worthwhile life, and to help them begin or continue their emotional journey.
In collaboration with a very experienced team, we are testing a book group discussion guide with survivors with aphasia (and sometimes their care partners). We are also developing guides for non-aphasia stroke survivors, care partner groups, professional caregivers, and general reading groups.
A second project is investigating whether it would be helpful to include more content about identity and the emotional journey in the curriculum for degree programs in speech, physical and occupational therapy and other disciplines that serve stroke survivors.
In our initial pilot projects, we worked with faculty and graduate students from the MGH Institute of Health Professions and Sargent College at Boston University. After reading about identity theft, virtually all survey respondents felt it was important to include the book or related content in the degree curriculum. This topic seems to get much more attention in other countries. We found articles about this from England and Australia, and a Canadian leader in the aphasia community spoke at a recent session we facilitated about how they actively integrate these issues into their care systems. We look forward to learning from our international colleagues.
We are not broken
Part three of Identity Theft is called Redefining Recovery, and in Chapter 17 we wrote:
“I felt broken after my stroke. So did Sean Maloney, who expressed the shattering realization that anything can fail. So did Anthony Santos, who wondered when stroke would happen again, and Jim Indelicato, who feared for himself and his family when he couldn’t be the savior and protector. So also for Ahaana Singh, who had the feeling that she couldn’t keep up mentally and others just didn’t understand it. Professor Sharon Kaufman noted, “In the year following the stroke, no person we spoke to, even those who had seen and felt their lost function, claimed to have recovered.”
Does successful recovery require that we regain everything we’ve lost? We don’t think so! We encourage all survivors to work long and hard to reclaim as much as possible. Debra is still improving 10 years later.
But we believe that successful recovery should be defined as restoring your identity and a worthwhile life, with all the skills you can regain (and keep!) despite those lost. We believe there needs to be many more resources to support stroke survivors and care partners to achieve this type of successful recovery. We hope that our efforts will help create some.