Will They Ever Really Know Me?

At the beginning of each year, I look back on the year just closed. 2023 was, in many ways, a great year. But it got off to a tough start.

A fall to challenge my identity

On Feb. 17, I fell while skiing and broke my hip. I fell getting off a chair lift. There was nothing obvious that made me go down, so my hip actually may have broken when I stood up, causing the fall. We’ll never know.

I worked hard to get back on skis after my stroke in 2010. Skiing has been a big part of my life and my family’s life. It’s an important part of my identity. Two years after my stroke, Steve helped me restart from the beginning. It took tons of time and effort to get boots that fit and other gear that worked with my disabilities. I spent several incredibly frustrating winters on the “bunny hill.” Candidly, it was no fun at all. But I was determined. For about eight years, I slowly got better. While I can’t say I had fun skiing, the progress felt good. It motivated me to do more. Finally, about three years ago, I actually had fun. Slow turns on a groomed intermediate slope – not what I used to do, but it was finally more fun than work. These last few years, I felt like I had preserved my identity as a skier.

After last winter and the broken hip, I don’t know if I want to ski anymore. I can, but I’m not sure it's worth the risk of breaking something else. The prospect of quitting skiing completely has me very unsettled. Steve says he thought the change from how I skied before my stroke to how I was skiing after would be more difficult for me to swallow. It doesn’t feel that way to me. Giving it up completely is challenging my sense of self. In some ways, this is no different than the choices all people have to make in life. How much risk are you willing to take so you can do the things you want to do? But it feels harder, as I’ve lost so much already. I’m fighting to hold onto as much as I can, but injuries are more consequential when I already have significant disabilities. I’m really struggling with this one.

Our growing family

Now to the best of 2023. In July our oldest son Danny married Dhivya Arumugham. We love Dhivya. Then in December our second son, Adam, married Mia Cabello. We love her, too. We love both of their families and were able to spend some really special time with them before, during and after the two weddings. Watching our kids beginning to form their own families is amazing – and our extended family is already bringing a new richness to our lives.

Amid all this happiness, I found myself thinking, and said to Steve, “Dhivya and Mia will never really know me. They won’t know the parts of me I lost with my stroke.” I’ve found myself thinking a lot about that. They know very well who I am now. That includes many aspects of my life that are no longer present. They know about those I used to do but will never experience them with me. Two people who are now among the most important people in my life will never know that Debra Meyerson.

I think this is a particularly powerful example of what I experience every day, and I’m guessing I’m not alone. It’s part of my struggle to understand, and accept, who I am today – having lost so much because of my stroke. I know intellectually that everyone changes, so everyone has some experience of knowing that people new to their lives will never experience the “old them.” But this feels different. It makes me really sad.

I don’t have an answer for this. I suppose it’s work that I’ll keep doing for the rest of my life –understanding myself and my relationships with others. It’s why we feel so strongly that all survivors – from stroke or other illnesses and accidents that cause trauma and disabilities – need support with this emotional journey.

As I dive into 2024, I am trying to remind myself of those things that I know will help me make the most of the year – and the rest of my life ahead. Many are included in Identity Theft, the book I published almost five years ago, and are at the foundation of our work at Stroke Onward.

1. Give myself the space to grieve. I’ve lost some really important aspects of my life that I deeply miss – things I’d love my new family to have experienced in me, too. And I have to ask Steve and others around me to give me that space to grieve as well.
2. Celebrate all that I still have in my life. Two weddings in 2023 certainly highlight how much I have and that good things can and will keep coming.
3. Look forward, not back most of the time, but not all the time (see No. 1!). “Yes, that sucks, but now what do I want to do with my time and the opportunities I still have?”
4. Celebrate small wins, whether they involve small improvements in my capabilities, new adaptive solutions, or just ways I find to enjoy life in the face of challenges. Small wins add up.
5. Make deliberate choices about who I am and who I want to be. “How do I want to use what I still have – in the face of stroke-induced constraints on what I can do – to create meaning, purpose, hope and pleasure in my life?”

Needless to say, my emotional journey in recovery from stroke is a work in process. It will be forever. I guess an emotional journey is a fact of life for everyone, stroke or not. I was on an emotional journey before my stroke, too – as a parent, a partner, a professor caught up in the competitiveness of success and more. But it’s definitely been a tougher journey since.

Sincere thanks to Steve for helping me get these thoughts on paper.

May 2024 be a great year for all stroke survivors and their families.

 

Stroke survivor Debra Meyerson and Steve Zuckerman, her husband 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.