Identity and finding meaning and purpose after stroke

October is Mental Health Awareness month. To that end, we’re honored to share a guest post from Flannery O’Neil, the Executive Director of Stroke Onward, a non-profit organization that provides stroke survivors, families, and caregivers with resources to help them navigate the emotional journey to rebuild their lives and identities after stroke. Her post addresses some of the emotional issues associated with recovery from stroke.

When Stanford University tenured professor Debra Meyerson, Ph.D. experienced a severe stroke in 2010, she was left with aphasia and physical disabilities that left her unable to maintain the professor role that she worked so hard to attain. This left Debra to wonder “who am I now?” In the blink of an eye, Debra’s identities of professor, parent, wife, friend, daughter, and sister had been altered. 

Beyond the physical implications of her stroke, she and her loved ones had to start thinking about her recovery in the context of “reclaiming the pieces that mean the most” and redefining meaning and purpose in her life. For Debra, this redefinition took the form of writing the book, Identity Theft: Rediscovering Ourselves After Stroke and founding of Stroke Onward, a nonprofit now working to change the stroke care system. For each survivor, this will look different — we don’t all have to write a book and start an organization to rebuild our identities and find new meaning.

What is ‘identity’ and how might it change after stroke?

Throughout your life, you are writing the story of who you are. Take a minute to think about how you describe yourself — not just what you do, but also the things you most care about. How do your friends and family describe you? Now, think back on your life… are you the same person as you were five years ago or 10 years ago? 

Four key factors about identity:

• We are made up of a variety of identities – As Debra writes in her book, “our identity is not a static thing… It is a mix of our desires and ambitions, our associations and roles, our values and our relationships, and our emotions and thoughts.” 
• Identity is ever-changing – When a stroke occurs, it can dramatically impact your identity; but it’s important to remember that everyone is changing all the time, even without a traumatic event like a stroke.
• Our relationships impact our identity – we are who we are in the context of the people and communities around us. After a stroke, relationships can change but it is important to remember that you can choose who you spend your time with. 
• There is a choice in identity – think about who you WANT to be; disabilities from stroke may limit your choices some, but they don’t have to dictate who you are. 

What do we mean when we say “finding meaning”?

The previous article in this series discussed the emotional adjustment after stroke and the stages of grief which historically ended with the acceptance stage. A sixth stage of grief was recently added – finding meaning. David Kessler authored the book Finding Meaning: The Sixth Stage of Grief after experiencing the death of his son. After his extensive work on the subject of grief and having co-authored two books with Elisabeth Kübler-Ross, including the creation of the Five Stages of Grief, undoubtedly Kessler is an expert on grief. Through walking the stages of grief yet again, Kessler realized that there was something missing from the five stages. As he writes in his book, 

Loss can wound and paralyze. It can hang over us for years. But finding meaning in loss empowers us to find a path forward. Meaning helps us make sense of grief.

His book examines the role of meaning in our lives and particularly so after grieving loss, whether that be loss after stroke or death of a loved one. Meaning can come in different ways but helps us to understand that “your loss is not a test, a lesson, something to handle, a gift, or a blessing. Loss is simply what happens to you in your life. Meaning is what you make happen.”

Tools for your after-stroke journey:

• Set reasonable, measurable goals – recovery and rebuilding take time. In setting reasonable, time-specific goals, you will pace yourself for the journey ahead.
• Take time to appreciate small wins – remember those goals you set? Don’t forget to celebrate the wins along the way! This is an important motivating factor to keeping up your progress.
• Build Your Community – whether it’s through your religious community, volunteering, supporting your favorite sports team, or participating in a support group — whether with old relationships or new — make sure to take time to connect with others. The American Stroke Association has a comprehensive listing of support groups.
• Adapting Activities – Your stroke might make it difficult to participate in activities of daily life or recreation you used to enjoy, but there are many ways to adapt these activities. Seek resources in your community and on the internet to support your specific needs. MoveUnited has a comprehensive listing of adaptive sports program locations across the US. 
• Redefining work – working after a stroke can look very different. For some, it may mean a return to full-time and for others, part-time is a better option. If you are not able to return to a paid position, consider volunteering your time for an organization whose mission you are passionate about.

At Stroke Onward, we define recovery by both the rehab and the rebuilding that you do. Remember that it takes time – this is a marathon, not a sprint! Using the tools above will help get you on your way to rebuilding a new you. 

References / Resources

• Kessler, D. (2020). Finding Meaning: The Sixth Stage of Grief. Scribner Books.
• Meyerson, D. E. &  Zuckerman, D. (2019). Identity Theft: Rediscovering Ourselves After Stroke. Andrews McMeel Publishing.