**This post contains affiliate links that I may make commission from; however, all opinions are my own**
You know that I have gone through hell and back this last year with my health, all of which started with an Amniotic Fluid Embolism during the birth of my fourth child, Lucy. Not only did I have that, but sometime in the trauma of all of that, I had a stroke. Not a major, leave me incapacitated for life stroke, but one that had an immediate impact on my memory, both short and long term, and affects my day to day ability to function now, seven months out.
I saw this book mentioned in a blog post about strokes and I pre-ordered it as soon as I heard about it. Later, Christine Hyung-Oak Lee would be on MPR and a few friends actually heard her piece, thought about me, and immediately told me this is right up my alley.
As it turns out, we were all right.
Tell Me Everything You Don't Remember - Christine Hyung-Oak Lee
A memoir of reinvention after a stroke at age thirty-three.
Christine Hyung-Oak Lee woke up with a headache on the morning of December 31, 2006. By that afternoon, she saw the world—quite literally—upside down. By New Year’s Day, she was unable to form a coherent sentence. And after hours in the ER, days in the hospital, and multiple questions and tests, her doctors informed her that she had had a stroke.
For months afterward, Lee outsourced her memories to a journal, taking diligent notes to compensate for the thoughts she could no longer hold on to. It is from these notes that she has constructed this frank and compelling memoir.
In a precise and captivating narrative, Lee navigates fearlessly between chronologies, weaving her childhood humiliations and joys together with the story of the early days of her marriage; and then later, in painstaking, painful, and unflinching detail, the account of her stroke and every upset—temporary or permanent—that it caused.
Lee illuminates the connection between memory and identity in an honest, meditative, and truly funny manner, utterly devoid of self-pity. And as she recovers, she begins to realize that this unexpected and devastating event has provided a catalyst for coming to terms with her true self—and, in a way, has allowed her to become the person she’s always wanted to be.
I have to tell you that I identified with this so much that my book pages are literally bent on so many corners and I have notes all over it on post it notes so I could go back and remember something poignant. I feel like the biggest hurdle in my recovery is dealing with other people, everyone wants you to just be better because then they are off the hook with being nice, going the extra mile, caring, whatever. It's like, "Oh, she's not sick anymore, thank god!" and I'm standing here like, "Yes, yes I am. I am just really good at faking it so I don't feel stupid and you don't feel obligated." But as I read this book, Christine gets it.
I don't remember much of anything from the day before I gave birth until sometime at the end of October. Everything since October is spotty at best but I'm able to fake it every day. The great thing is that everyone who interacted with me, particularly early on, all confirm that I had no idea and I really was like Dory from Finding Nemo, and I was argumentative, at one point convinced Matt was out to get me and lock me up in the loony bin. On page 44 she writes,
"But in those first few weeks I was lost without knowing I was lost. I was searching with a deep belief that all would be well, not out of resilience or hope but out of ignorant bliss. I was in a hospital room, sheltered from the world, where nurses and doctors protected me from overstimulation, where everything happened on schedule, and where the blank white wall was not an acre of boredom but of great comfort. My world was that room, and in that room my struggles had little measured impact."
God yes. I don't remember much but what I do remember of my hospital stay are quick snippets, like snapshots, and in every single one of them I have a feeling of safety and security, a feeling that I didn't want to go home but of course I couldn't really place why. Her book chronicles first visitors who are at first buoyed by how great she looks, how she doesn't look sick but are quick to realize that things aren't right, the memory isn't there and basically that she didn't know what she didn't know.
And that's the way I describe those first months, I didn't know what I didn't know. I frequently say I don't know if I'm actually getting worse or if I'm just realizing how bad things were and still are.
I also have had to confront how much I hate medical attention. I am very much the non-complainer. I have been to the doctor more times in the last two months than I had been from the ages of 16-34. Easily. And that counts during my previous pregnancies. I am very much that person who will not go to the doctor unless there is a damn good chance I'm terminal. Same with my kids. Ear ache? You aren't going to die. We are not going to be the people who become immune to anti-biotics. So the entire concept of going to the doctor to fix myself is a difficult adjustment. On page 146 she writes,
"It felt strange, actually, to pick up the phone. It felt completely self-indulgent to ask for medical attention. I was still so afraid of showing vulnerability. To say 'something is wrong' was to say something in my body was failing was to say I needed someone was to say I deserved help. I did not think I deserved help."
Preach it, sister.
There is also a passage where I re-read it so many times because I felt like it highlights my time now, battling depression and anxiety, reeling with being someone with PTSD and how people laugh at that because it's not like I went to war or anything. But I've learned that dying in any kind of way is terrifying, and nobody comes back unscathed. Christine writes on page 205,
"..I knew the last mile is the hardest. It is the mile you often travel on your own. Where you must go outside your comfort zone. Where coping is finding a new way to do the old things. Your doctors are no longer there, your friends think you are fine, and you are functional enough to not elicit any sympathy."
And god, I'm there. I'm so there.
She also writes, on page 235,
"I felt no one wanted to talk about it - not my cadre of healthy friends, anyway. When I said, "I can't remember-ever since the stroke, I can't remember little things," they told me they could not remember things, either. That it was old age, that it was their recreational marijuana use, that it was exhaustion, that it was normal. Not the stroke."
God, YES. I swear to you, if I hear someone tell me this is normal one more time, I'm likely to lose it. You'll see me on the Today Show as the woman who lost her shit in a grocery store or at after school kid pick up. I'm not saying I can't remember things to elicit sympathy, I'm stating a fact. I'm letting you know that this is still a problem, and it's not normal. None of what I am dealing with is normal. You might have hormone problems, but you don't have them from having your pituitary gland shot during the course of bleeding to death while stroking out. It's different. Everything about me is different and special but it all sucks.
So yes. This book. This book was EVERYTHING that I needed right now. I didn't even know I needed it. I wish I could just hug this woman because this book feels like a life preserver for me right now. I cannot recommend this highly enough, it should be a mandatory read for any stroke survivor.
Just buy it. Now.