A couple of weeks ago, I was feeling a bit blue. I’ve written that before. It happens from time to time. It’s not that I’m depressed, just that sometimes my spirit gets a bit low. Living with disabilities is hard. Not being able to do what I used to do – what I still want to do – is hard. And this time, Steve and I seemed to be more at odds with each other too. There was a bit more friction than normal – and a bit more silence.
We’ve done some talk therapy together over the years, and it’s been really helpful. This time, fortunately, we did something we’ve said we should do more often – a self-therapy session: Block out time. Get distractions out of the way. Center on the desire to understand what’s wrong, and what we might do about it.
Looking forward, not back
One of the things that got me down was reading a description of me in connection with my work at Stroke Onward – a description that didn’t mention I had been a professor at Stanford before my stroke. Steve had tried to explain that in that context, the fact that I had been a professor wasn’t really important. What was important to this audience is all the work I’ve done since my stroke, and am continuing to do now. His logic may be valid, but Steve trying to talk me out of my frustration didn’t help at all. In fact, it made things worse.
Placing importance on my past accomplishments was looking back. In writing Identity Theft: Rediscovering Ourselves After Stroke, I talked all about the need to look forward, not back. To focus on the life I want to build, not the one I lost. So why was I looking back? Because it’s human. Even if my past career wasn’t directly relevant to the present activity, what I did before my stroke played a big role in who I am after my stroke. It’s still part of my identity, even if it’s no longer my job. And, even more, I’m still really bummed that my stroke forced me out of that job!
In the book, I also talked about the need to create space to grieve – that the goal isn’t to “get over” my loss, it’s to “get beyond” it – to move forward constructively in the face of it. I don’t want to get trapped in misery because of my grief, but I also never can – probably don’t want to – stop thinking about important things that I have lost. Whether it’s my lost job at Stanford, or my dad who died way too young, they are still important parts of who I am and I don’t want to forget them. I want to remember all the good things about them and learn to more effectively process my emotions around the loss of them as I move forward with a rewarding life.
Time for a Pity Party?
Our daughter Sarah used that term when she was early in high school, shortly after my stroke. She was complaining to Steve about some nasty behavior at school that was driving her nuts. Like Steve, she’s normally a problem solver, so he started asking questions that might lead to solutions. She paused, looked at him, and said “I’m not ready to solve this. Can you just join me for five minutes and have a pity party?”
Steve and I talk regularly in our work about the power of the pity party, and yet we often forget to use it ourselves. His trying to talk me out of my frustration wasn’t helpful. I needed him to join me in a pity party. One of the reasons we like that expression is because parties have a beginning and an end. We think it makes it less likely to get stuck in a negative space for very long.
Processing negative emotions
We all do it differently. Some of us need to “sit with them”. Others, like Steve, don’t like them. “I know I need to get better at this, but I just don’t like living in and around a lot of negativity,” he said while we walked. I love that about him – he’s one of the world’s great optimists. And when there’s a problem, he’s great at finding ways to solve it. That’s often good for the person with the problem, but also for him – it gets rid of the negativity. That sure has served me – has served us – very well in our 12 years since my stroke.
But it doesn’t always work. Like this time, sometimes I need him to join me in a pity party. Using that construct is really helpful to Steve, as it tells him “don’t worry, I don’t plan to stay in this negative place forever!” I love that Steve told me on our walk that he wants to learn to spot these moments better. And I need to get better about asking him for that pity party when I need it.
A lifelong journey
Looking forward enabled me to write Identity Theft, and do the work we do at Stroke Onward. That, in turn, gives me the purpose I need in my life to help me stay focused on looking forward. And yet, Steve and I realized on our walk that often my “blue” periods follow good things happening in our work. I’ve written previously about this happening after fun social events as well. Good things experienced with the constraints of my disabilities make me think about what I could do – used to do – without them.
Intellectually, I think I’ve accepted that I’m going to live with a “look forward, look back” tension for the rest of my life. Emotionally, I’m continuing to learn to live with it. I need to accept that it will be an ongoing emotional journey. I need tools to help me do so. Steve jokes that I should read the book I wrote once a quarter.
I want to remember that it’s okay to have a pity party. I want to learn to leave that party more and more effectively as my journey continues. And to do that for the rest of my life I will need support ‒ support from Steve, from my therapist, from friends and family – to remind me when I’m slipping. Not scold me, just remind me.
And maybe most of all, not only do I need to accept that kind of support, I need to ask for it.
Thank you, Steve, for helping me get these thoughts into our column.
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.