Supporting the Emotional Journey in Recovery – A Call for Action

In 2010, our world was turned upside down by Debra’s severe stroke. She worked her tail off in all kinds of therapy for three years, confident she’d get back to her job as a professor at Stanford. Her ongoing aphasia, a condition that makes it hard for some stroke survivors to speak, made that impossible. And then her second crisis began – her identity crisis.

We were lucky. Debra was an academic who had studied identity. Living with new disabilities and a lost career, she was thinking deeply about her own identity: “Who am I now?”

She decided to write a book, and the five-year writing process led her through an identity journey that proved critical to her recovery. It also helped her find a new way to return meaning and purpose into her life. In 2019, almost nine years after her stroke, Identity Theft: Rediscovering Ourselves After Stroke hit the shelves and audiobook services. At the same time, we formed Stroke Onward.

We are forever grateful to the doctors who kept Debra alive and helped her regain her health. We’re equally grateful to all the therapists who have helped her – and continue to help her – regain physical and speech capabilities. But we also learned, mostly on our own, that there is another equally important part of the recovery process: the emotional journey to rebuild identity and a rewarding life in the face of whatever disabilities remain.

Great work is underway – we just need a lot more

Writing Identity Theft made us realize there is a huge gap in the medical system for stroke survivors with respect to supporting their emotional journey to rebuild rewarding lives. This critical journey gets far too little attention in the stroke system of care, often none at all. We hear this from survivors, families and professionals over and over again.

We are by no means the first people to identify this gap. There are people doing incredible work to try to fill it. We’re collaborating with speech language pathologists working to support people with aphasia. We have found some great psychologists and other mental health professionals who care deeply about providing this support.

But relative to the need, the lack of resources is appalling. For the U.S. stroke care system, this issue is not recognized or supported in any meaningful way. We’re talking about more than 9 million stroke survivors, with over 600,000 new survivors each year.

What does an emotional journey look like during recovery?

We just published on our website a recovery resource that answers this question in greater detail. We hope you’ll take a look.

Most frequently talked about, a critical component of the emotional journey involves recognizing and getting help for mental health conditions such as depression and anxiety. While resources are spread too thin, we do see institutions in the stroke systems of care looking for these mental health conditions after stroke and trying to direct people to appropriate help.

But the emotional journey is much more than that. When asked, most survivors report experiencing strong, frequent, sometimes rapidly changing emotions after a stroke. They vary tremendously by person and over time. But they are common, should be expected, and should not be ignored, suppressed or apologized for.

This is where survivors report such insufficient attention and support. And it is where we see the urgency for change in the stroke systems of care to support survivors moving through these emotions while rebuilding their identities and lives.

Allow yourself to grieve

While researching Identity Theft, we came to appreciate the large body of work developed to support people who are grieving the loss of a loved one. Strokes happen unexpectedly and can leave a survivor's life in shambles.

Many survivors describe the feeling of having “lost their former self” even when disabilities are minor. That loss can feel a lot like losing a loved one. Debra has written about feeling powerful, and very similar, emotions around the loss of her former self and the loss of her father about 15 years before.

Many tools and resources are available to help in the grieving process, and we think they can help stroke survivors process the emotions that most if not all of them experience. Our recovery resource discusses this in greater detail, particularly the value of the five stages of grief as a framework to help understand and process your feelings. It also provides some useful links.

Rebuilding IDENTITY in recovery

One of the most consequential things many stroke survivors lose after a stroke is their identity – their sense of who they are. A critical aspect of an emotional journey in recovery is regaining that sense of self – discovering who you are now. Even more important, is a sense of who you want to be now. Rebuilding identities involves “reclaiming the pieces that mean the most” to us. Doing so is critical to bringing meaning, purpose and pleasure back into our lives.

As you think about who you are, and who you want to be, remember:

• Each of us has many identities – Identity is not a static thing. It’s a mix of our desires and ambitions, our associations and roles, our values and our relationships, and our emotions and thoughts. (Identity Theft, 2019)
• Identities are dynamic – A stroke change people in a moment. It’s important to remember that we all change all the time. Even with no traumatic events, none of us is the same person we were 5, 10 or 20 years before.
• Our relationships impact our identities – We are who we are in the context of the people and communities around us. After a stroke, relationships can change. But remember, there is choice in who we spend our time with – who we want to help define us as we rebuild.
• Identity is a choice – Disabilities may limit choices, but they don’t have to dictate who we are. The question isn’t just “who am I now?”, it’s “who do I want to be now?”

Seek tools for rebuilding identities and rewarding lives

Everyone should work as long and as hard as they can and want to regain more of their capabilities. Debra is still working hard to do so almost 12 years after her stroke.

But don’t define the success of your recovery as your success in regaining previous abilities. Try to accept that some change may be permanent and embrace the opportunity to rebuild a full and rewarding life in the face of that change. Read our recovery resource for a few practical tips and resources to support this part of the recovery journey.

A stroke system of care that fully supports every survivor’s emotional journey in recovery.

Wouldn’t that be great?! It’s our vision at Stroke Onward. For three years, we’ve organized our work to lay foundations to move the system in this direction.

We’ve built collaborations with incredible people and organizations. We’ve created some materials that we know are just a drop in the bucket in meeting the need.

Among other things, we’ve begun to understand the systems for training the next generation of stroke care professionals and have introduced the emotional journey into the speech therapy curriculum. We’re doing a “learning tour” with leading mental health professionals to understand how their expertise can contribute to a system that more fully supports stroke survivors and their families.

Changing the stroke system of care will take decades. And it will take the effective collaboration of people both inside and outside the traditional health care system. Most of all, it will take the active voices and involvement from survivors and their families – the people the system is supposed to serve.

Will you collaborate with us?
Candidly, we don’t yet know exactly how we can best collaborate with each of you. We’ll figure it out with time. Hopefully you will help us do so effectively. We’re in the process of expanding our team, refining our priorities and improving our system for engaging effectively with our community.

Join a growing movement to improve the stroke systems of care by joining our community.
We need your voice and your ideas.

We won’t barrage you with emails, but we will stay in touch. With time, we will create more ways for you to get actively involved – if and to the extent you would like to. Together we can create stroke systems of care that fully support every survivor's emotional journey in recovery.

Stroke survivor Debra Meyerson and Steve Zuckerman, her husband of 33 years and “carepartner” after stroke, founded the nonprofit Stroke Onward to help survivors, families and caregivers navigate the emotional journey to rebuild their identities and rewarding lives. As guest writers, they share their experiences and insights in their post-stroke journey.