The Shattered Mask

It was actually worse than I remembered...

Remembering what was lost

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Think about a time when you had to face something overwhelming and deeply painful. How did you cope? Did you let the world know exactly how you were feeling? Did you mask your distress, try to shrug it off, or bury it so deeply that you don't even remember the emotions you went through? Bring yourself back to the present moment. Can you identify how you're feeling right now? 

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A recent conversation with a friend about resiliency led me to revisit the early days after my stroke. I began to wonder how I had been able to (mostly) maintain my emotional equilibrium after my body and my life changed so drastically.

So, I decided to do a bit of psychological archaeology and take a look at the journal entries I’d made around the holiday season in 1990. What I found there surprised me.

Yes, the me I’ve carried forward in my mind was there: a young woman determined to keep regaining feeling and function in her left side, who was curious and engaged in her healing process, detailing each improvement, no matter how subtle. She observed her own experiences and tried to make meaning out of them. This I remembered well.

But she also often struggled with depression, dark thoughts, loneliness and isolation. She spent endless energy trying to hide her real feelings from those around her. She masked her frustration and anger by putting on a brave face. She did such a good job that the extent of her emotional struggle, the depth of her loss was washed from my memory by the life that unfolded in the ensuing decades. Even as I write this, it’s easier for me to keep that time at a distance by referring to my 30 year old self as “she” rather than “me”.

From my journal…

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November 27, 1990

I am insular. I feel easily depleted. It’s as though I’ve been pushing myself along with good effort and now I just don’t want to do it anymore. I want to be understood, but I feel it’s hard to express it. I can’t be pushed. I feel BAD about what happened to me. I almost let that come out in therapy, but I stopped it. I really do feel bad about my loss - but no one can understand it. I feel isolated. My depression and grief just hurts other people or I think they think I’m using it as an excuse. Everyone just wants reassurance from me and I don’t want to give it to them anymore. 

I feel locked into this body that doesn’t work right- dragging it around. No one is there for me in the way I would need so best not to rely on anyone or reach out to anyone. Best to continue to retreat inward rather than to keep hoping that someone can really help me. No one can understand or be there completely. Oh, it’s just the way of the world…

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I’m struck by the push/pull of emotions here. I wanted so much to be understood, but felt that was was an impossibility. The exhaustion of trying to make those around me feel comfortable with my disability recurs again and again in the journal. It’s amazing to me that even though I was seeing a psychologist to deal with the aftermath of the stroke, I didn’t want to open up to her. And the way I diminished my own natural feelings in a private journal by writing, “Oh, it’s just the way of the world”. That hits home. Now, thirty-five years after this journal entry, I want to comfort that young woman who wrote this as though she were my daughter.

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December 4, 1990

I suddenly feel sick of protecting everyone from my experience. My stroke was real. I’ve had to live with it and face it and come to terms with it. I’ve denied how it has made me feel. I haven’t been selfish enough at the risk of seeming sorry for myself or burdensome. Being too spirited isn’t real. My defenses are so high that I can pretend I haven’t felt that affected by it. But fuck you all! This happened to me!

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My anger bursts out in this entry. Cursing at those around me for not being able to acknowledge what I’d been through and what I was dealing with every day. Did I act on that anger? Very rarely. Did I understand that it was impossible for the people I knew to fully comprehend my loss? Yes - I understood. The anger remained mostly inside. The mask remained intact. In fact, in this next entry I see how I used my upbeat, strong and determined persona in a conscious way. It was a kind of survival instinct.

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December 5, 1990

I went to have a check up and charmed the doctors. I enjoy doing that. It's sincere because I like to reach out. I like to be seen that way, as brave and spirited. If only I could make a living having an optimistic personality. 

I had electric stimulation with walking and was able to walk more normally. In fact, it was almost like before. I felt so happy to see myself and my old walk even if it was like a ghost or a dream. I didn't want to take off the (electrostim) device. I wanted myself back and there I was in semblance...

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Again, here’s the awareness of and commitment to the brave face. Also, I like the wry joke to myself about making a living being optimistic, that even made me laugh just now. It was also interesting to see how I had to assure myself that this “charming” part of me was sincere, as though I was ashamed of being a performer, even if, in some ways, I was method acting.

Ophelia by John Everett Millais 1851

And finally -

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December 31, 1990

New Year’s  Eve - Again. 
I hope - I pray- I trust that 1991 will be a better year than 1990! The worst year of my life. A very full learning year: 
1. Marriage failure
2. Back and forth to England twice to see how much I love it. 
3. MY STROKE
4. Learning to be on my own. 

It was the fullest year of my life - the year when life introduced itself personally. So strange - a lift off. A starting point...
What will this year bring? What?  it's a good thing that people don't know what the future holds as they go towards it...

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I was also inspired to revisit my young post-stroke self by reading many writers on Substack who honestly and viscerally chronicle their personal experiences with sickness, health, disability and mortality: Hello Adversity, Dispatch from Bewilderness, Dissent in Bloom, The Disabled Ginger, Hello Mortal, Creative Eldering, Patient, Woman Of A Certain Age, American Woman and many more have moved me deeply with their stories.

These journal entries from winter 1990 evoke the feelings I wrestled with in that cold, gray time. I’m sharing this to remind myself - and those who read my writing - that resilience is a beautiful thing, but its roots lie in the deep down authentic embodied emotions that make us vulnerable and human.

To read the whole series start here:

Part 1: The Bleed - June 1990