This past fall, I read Christine Lee’s memoir, “Tell Me Everything You Don’t Remember.” It’s the story of her 2006 stroke and the recovery.
A theme through the book is one of isolation. She lost her short term memory, and she lost her ability to communicate. For the first time in her life she had to learn to listen to herself and trust her intuition. Her memoir is about her journey through that series of new, confusing experiences to the different life she leads today.
One thing she talks about is before going to the hospital, before realizing she was having a stroke, Aphasia was setting in. She lost the word for egg and could come up only with “shell bells.” I’m not minimizing the pain of aphasia, but there is something beautifully poetic about that word substitution.
'Aphasia has a very beautiful language, and again, I think it comes from an intuitive place.' -- @XtineHLee #stroke Click To Tweet
After I finished the book, I reached out to Christine on Twitter and invited her to be on the show. I’m delighted she joined us and now I’m thrilled to bring you this conversation with Christine Lee.
'Stories aren't stored in our minds as one long narrative, but bits and pieces that we as humans weave together.' -- @XtineHLee #stroke Click To Tweet
Christine Hyung-Oak Lee is the author of the stroke memoir Tell Me Everything You Don’t Remember, which was featured in The New York Times, Self Magazine, Time Magazine, and NPR’s Weekend Edition with Scott Simon. Her short fiction and essays have appeared in The New York Times, Zyzzyva, Guernica, the Rumpus, and BuzzFeed, among other publications. Her novel is forthcoming from Ecco / Harper Collins.
Passages from the Book
Here are some quotes that struck me as interesting, important, poignant, and/or beautiful.
I was a body more than anything else, because my mind was on break. My mind was at peace. All the chatter in my head—What should I make for dinner? I need to go grocery shopping, but maybe I should go do that after my doctor’s appointment, because then the groceries will stay cold instead of sit in a car, and the store is on the way home, and so I won’t have to backtrack, and wait, do I have enough gas? When was the last time I put gas in the car? What if I run out of gas?—all that chatter was absent. All the burden of planning, all the anticipation, all the worrying and fretting, the burden of thought itself, was gone those first few weeks of recovery.
With zero questions, I felt less helpless. “How are you feeling, Christine?” “I am fine.” I didn’t know what else to say. I was surprised that I knew those words, “I am fine.” I now understand why I did not know the words for “I need help.” I was not in the habit of asking for help. It had become a habit for me to say I was fine. It bothered no one when I said I was fine. It was thus easier for my brain to shoot out that automatic verbal response. Help, on the other hand, was a new concept. My brain could not build new things. It was busy repairing the old things. Help was difficult. Help was complicated. So, I am fine, I said.
I looked at the key in my hand and wondered where it would go. I stopped thinking about what a key was and how it would work and where it should go and released the key from my conscious mind, and before I knew it I’d opened the front door to set down my jar of spaghetti sauce on the counter. Like magic.
Worrying is an exercise in memory.
The mind and brain are different entities. The mind, or soul, is abstract. The brain, flesh and neurons. But the functions of the mind and brain are linked—a marriage of partners, each one distinct but also related and connected to the other. Without the mind, the brain is an organ that has no way to express higher-order thinking. Without the brain, the mind starts to make up stories.
Later in my recovery, when I was well enough to understand what had happened to me, to realize my deficits and become depressed about my stalled progress, when I wondered if my old life would ever return in any familiar form, I pondered taking a big dose of warfarin and then slicing my wrists.
I feel those first weeks of stroke recovery as a series of unfettered, perfect moments, the kind that I now seek through retreat or in yoga or music. I am filled with nostalgia for that period of time; they were a gift to me, a state of mind that so many people seek in their adult lives. I was brain-dead. So disabled, yet blissed out. This, in stark contrast with what was to come—a heightened awareness of my shortcomings, a darkness to counter the lightness of those early weeks of recovery.
Healing is exhausting. Plasticity comes at a cost. The brain, while it heals, does so at the expense of energy—I was always exhausted. I was still sleeping up to twenty hours a day. Sleep affects plastic change by allowing us to consolidate learning and memory. When we learn a skill during the day, we will be better at it the next day if we have a good night’s sleep.
In an ideal world, all I wanted was for someone to sit next to me quietly.
But to the outside world I looked like I was in pretty good shape. In fact, I was in pretty good shape, given only six months had gone by. I was functional. Functional enough to technically survive the rest of my life as I was. But I was also well enough to know that I was not fully recuperated. I wanted to thrive. Surviving was not good enough.
'Because nobody was listening to me -- because I couldn't communicate with other people, I was isolated and left with myself.' -- @XtineHLee #stroke Click To Tweet
Hack of the Week
Make lots of notes.
Dealing with short term memory issues is tough. One way through it is to document as much stuff as possible — tasks you commit to, people you meet, resources you’ll need, that book you want to remember to order, the place you parked your car and more.
There are lots of ways to document these things. At the most basic, carry a small notebook and pen.
If you prefer a more digital experience, Christine recommends that you use your smart phone to send yourself an email. Use keywords in that email so late you can simply use the search function to find everything you don’t remember.'Most of my deficits were cognitive and therefore invisible disabilities.' -- @XtineHLee #stroke Click To Tweet
Christine H Lee Website
Christine’s previous blog
Christine on Twitter
Christine on Facebook
Christine on Instagram
Christine’s Mailing List
Christine’s Buzzfeed article that started it all
Episode 008 — Val Salva and the PFO
Buy the book at East Bay Booksellers
Buy the Book on Amazon
Where Do We Go From Here?
- You can read more about Christine over at her blog. Check out the links above.
- Read her book, “Tell Me Everything you Don’t Remember.”
- Share this episode with someone else who has gone through a stroke by giving them the link http://strokecast.com/Christine
- Try writing things down and emailing yourself to remember things.
- Don’t get best…get better.
'I think you have to find your tribe.' -- @XtineHLee #stroke Click To Tweet
Strokecast is the stroke podcast where a Gen X stroke survivor explores rehab, recovery, the frontiers of neuroscience and one-handed banana peeling by helping stroke survivors, caregivers, medical providers and stroke industry affiliates connect and share their stories.