4 years old, Voices from patients with TBI

Dear Jing – First open letter.

 

Pause and reframe. Before reading this post, I kindly ask you to reset your mind. Clear your head of thought – every task you believe you have to act on and any emotion you insidiously feel. Strip away your day, your life, and anything you know to be real.

Dear Jing,

Today is Wednesday, November 9th, 2017. Your mind is 1590 days or 4.34 years old. The reason I say this, even though your birth certificate says you are 25 years old, is that you have retrograde amnesia. Someday you will read this and never have remembered writing it. Perhaps one day you will read this and it will make you sad because you won’t know who you are, but I promise you, you were, and you still are, a really strong and smart person. You live to be supportive, inclusive, compassionate, and kind. This is who you are.

Remember you have life goals. You want to give people who have incredibly difficult lives hope. Why? You went to a funeral of an individual who lost hope and decided to take their own life. You understood this person very well because they were just one step ahead of you. You dipped your toes into the shoes they left behind and you thought about what you would want if you decided that enough was enough, because enough sometimes feels like too much.

This person ended up being one of the main reasons you became anchored to your life,  so you are very grateful for them. You never want to see another person who sincerely seeks to bring kindness to this world feel hopeless. You never want to see anyone not live up to their greatest potential. There is a white stone somewhere to remind you. But you don’t need that white stone because you trained yourself to remember that episode, especially when you are experiencing the kind of annihilating pain that splits your brain and makes living hurt. You live in their honor, and they are not there to hold you accountable, so you do it yourself. You are really strong, and you have a lot to hope for.

Remember it is okay that you are not the default person who is “living-centric”.  You are not suicidal, but you do not believe in living just to live, nor do you have the desire to live a very long life. You already died, that time when your head hit on something, probably pavement and all the “blood was everywhere”, and everything you were was gone. You already grieved that version of yourself and you let her go. You do not have a real past. You only have reminders and flashbacks of memories that haunt you relentlessly day to day. Sleep is terrifying because closing your eyes means scenes from a lifetime you don’t understand.

But you’ve trained yourself to live and love the present. Sometimes you forget this fact because haha, you have a memory disorder, which is amplified by not having the luxury of experiencing life the way standard individuals do. Sometimes you marvel when you walk on the street and you see all the people walking around you that you would have never gotten to experience if modern medicine didn’t “save” you. (Your favorite thing when walking around is the touch of the breeze caressing your skin. Yes, specifically, caressing. You always think about how great it feels. It is your favorite “in-the-moment” outdoor thing to experience).

Remember, you have brain damage in areas that alter your perception. You woke up with no emotions, almost none of your senses, and no coherent memory. Over the past 4 years, you did a really great job reconstructing your mind as best as you could. Remember to be proud of yourself for getting to a place where scientific evidence says would have taken you at least another 5-10 years, or frankly, you would have never been able to reach. But you are there. You got there in real time…remember what Professor S said?

“Jing, you are an outlier. A confounding variable. I can tell this is really hard for you, but you are going to make it. I want you to make it. You are going to graduate, walk across that stage at the same time as all your peers, but you will have done it while overcoming some incredible barriers.”

And she never gave you any answers. But she always asked you questions. She was teaching you how to problem solve. She never gave up on you. But she always reinforced one of your first core values: “Do what is right, not what is easy.” And you appreciate her for this. Remember this. There are a lot of memories you could work hard to keep, but this is one that you can never forget.

Now that you are refreshed, let’s do the rest of our past later. Let’s make sure I record September and October before it gets too far away from us. At this moment though, go to sleep, because you need it. I wouldn’t expect to have energy tomorrow because even though you may not be tired, you will still likely be fatigued.

Your last thought before your head hits the pillow should be that you are pursuing a quality of life that is a reality you created with the help of others. And therefore you have a lot to be grateful for. You are not alone and you are a product of humanity. There are those who will remind you, I think. If you can remember, at least remind them of how their contributions are why you remain supportive, inclusive, compassionate, and kind.

Tomorrow you’ll do your best. wuXx.

 

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