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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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Along For The Ride

Unseen difficulties of mental illness

It’d been a long week for me with school and work so I had planned to go out with a couple of buddies last night, get some dinner, go play some darts. At dinner one of my friends started talking to me about some struggles he had been having recently with anxiety. He had made a mistake at work a couple months ago and since then he has felt a lack of control of his career, worrying about job security.

It was difficult to hear parts of what has been going on for him, he’s been having physical symptoms along with trouble sleeping and just kind of felt stuck and not himself, and that he was unable to be himself because of his anxiety. I don’t think a lot of people realize just how difficult normal functioning is when you have an ongoing battle with mental health issues. Another aspect of mental health that I don’t think a lot of people consider is the comorbidity that goes along with it. More often than not someone will be battling more than one mental health issue, making it all the more difficult to overcome.

The reason that I bring this up, internalizing behaviors like anxiety, depression, somatic symptoms- are not obvious and can go unnoticed and unchecked for so long and at times to the extreme detriment of those who are suffering.

It is our responsibility as friends, family, and loved ones to be aware and vigilant when we notice changes in those around us, especially if we know there is a history of mental illness for the individual or in the individuals family. I take on the responsibility of being a supporter willingly and I will admit it is not easy to help sometimes. I have run into a couple of brick walls in my life when I have tried to help others, but I still will not give up, and I strive to be more helpful in the future.

I have been told that I can be somewhat parental, and not as patient-centered as I should be which is an important lesson to learn as collaboration is more effective for long-term care and not “band-aiding”. There are times when those who are suffering don’t know how to help themselves and they may need extra help and support and even some coaching, but then there are times when individuals understand their illnesses far more than someone who is not suffering and those are the ones that you need to listen to when you consider “how can I help?”

This is so important because if you think about it, having a mental illness doesn’t mean you are a child or are incapable of making your own choices, it just means that it can be a lot harder to do so and to handle certain situations.

Even if you do not personally know someone who is suffering from mental illness, you can still be a voice for those who do. Remember, not everyone who is suffering is obvious, and a lot of times it isn’t until it is too late. Sharing information on ways to get help and support is one way, but also just showing that mental health is important to you. Social media spreads far and wide and if we all can spread the message of support, those who suffer won’t feel so alone.

Gratitude, Suicidal Ideation, Voices from patients with TBI, Working through Trauma

My angels scrambled that day.

Two years ago, at this moment,
I sought the ultimate escape when I was in a state of triggered utter despair. I am grateful to [my] “heart-husband” and “heart-daughter” for calling the police, jimmying the door, and getting me to the help I needed so desperately. I had warned no one. I had given up on everything. The profound impact of my brain injury on the capabilities and possibilities for my future combined with the unshakeable despair left over from falling into a black hole overwhelmed a severely fatigued brain. I saw no tenable road forward. I had had enough. I said goodbye simply. I posted ‘so long and thanks for all the fish’. Left a note and a will. Took what my research said should have been a fatal dose. Locked myself in the bedroom and hoped they’d be too late. My angels scrambled that day.

Nothing in life can prepare one for the level of despair I felt when I flashed back into infancy. The first six weeks of my life, I was left in a neglectful, unprepared foster home in a state of raw emotional disregulation after being removed from my bmom without ever being held. The pain of Not being held or touched was excruciating for a strong Empath entering the world unwanted and hidden from all.

Set aside to cure like a hunk of meat until I could be legally placed with a barren couple in a poorly executed attempt at filling their void. Hidden in shame. A (whispered) Bastard. The Catholic Church was brutal to unwed mothers in that time period and the bastards were treated like unwanted puppies. But like the modern day pit bull, society believed we were born bad. The nuns scorned us and our mothers. When the nun handed me to my Adoptive Mother, she commented that my bmom “liked boys too much”. Judge judge judge. Assumed willingness is a fatal flaw in that judgy sh*t. That one comment ruined my life. My mother overcompensated to the point of harm. At 53, I’m finally shaking it all off but it’s too late for some paths.

Anyway, I am so grateful for the help I received both that night and the days that followed. It’s been two years of actively working with a Trauma Specialist Psychologist to slowly unravel the tangle of repeated trauma and PTSD and triggers. Blocked memories surfacing and popping like a noxious fart in the bathtub leaving behind the stench of old harm but Releasing the poison darts embedded by cruelty. Releasing my soul to dance in joy and love unfettered and free.

Metamorphosis in active mode.
Wings growing.
Blessed Be.
💋


The profound impact of my brain injury on the capabilities and possibilities for my future combined with the unshakeable despair left over from falling into a black hole overwhelmed a severely fatigued brain.

Thank you, Amber, for sharing your story. The feeling of being overwhelmed with a fatigued brain is a common thread that many within the TBI community experience. Similarly, the feelings of despair that may precipitate suicidal ideation are also very common in this perseverant, yet sometimes very fragile, patient population. I am happy to hear of your caring support system, your efforts to overcome your trauma, and of your wonderful attitude. May you continue to heal and for your wings to spread ❤

– Jing

 

{Photo taken by author in her own yard}

Along For The Ride

Sometimes, those who take care of others are the ones who need help.

Hey everyone, today I want to touch on some of my own struggles being in the supporter role. It has been very important for me to establish my own layers of support to make sure that I am being mindful of my own needs.

I have found it difficult at times to always be as encouraging as I probably should be, and something I have noticed about these times is I seem to not have enough spoons available to take care of someone else’s emotional needs as well as my own. When I refer to spoons, I am referencing spoon theory, which is a way to measure how much available energy you have to devote to different tasks throughout the day. Understanding and planning where and when to use your spoons is a way to be considerate of your own capabilities.

Understanding my own needs is imperative for the ability to actually be supportive of another. If I am unable to take care of myself, how am I supposed to take care of someone else? In regard to this, I have worked to establish my own outlets for when I feel overwhelmed or stressed in order to still take on what may be my most important role. Find a couple friends, a relative, maybe even someone at work that is available to have a chat with here and there. Unload some of the burdens so they don’t overwhelm you. Finding a stable support system for myself has enabled me to give more to those that need me.

I cannot stress (pun intended) the importance of self-care enough. I have had times where I thought I could do it all, manage every aspect of my own life and someone else’s only to crash and burn. In the long run that doesn’t help anyone! Another point that I want to make about finding your own support system is that in becoming your supporter, that person is also supporting and contributing to the positive outcomes of who you are supporting, so for me, every person that supports me is also supporting Jing in her recovery process.

The larger our support networks grow, as does the opportunity for advocacy. I will continue to reach out to others because it is what those impacted by TBI need. I hope that all of those who read this will do the same.

Feel Good, Voices from patients with TBI

I am Flawsome!

Amber is a strong woman with a TBI. Here is a post from facebook that resonated with Amber and she shared via her social media:

I am Flawsome!
I don’t have an amazing figure or a flat stomach. I’m far from being considered beautiful according to some, but I’m me. I love to eat food. I have curves. I have more fat than I should. I have scars, because I have a history. Some people love me, some like me, some hate me. I have done good. I have done bad. I go without make up and sometimes don’t get my hair done. I’m also random, hilarious, sarcastic and crazy, at times. I don’t pretend to be someone I’m not. I am a woman of substance. I am who I am, you can love me or not. I won’t change!! And if I love you, I do it with all my heart!! I make no apologies for the woman I am. 
Ladies, I dare you to put this on your status and share a picture of yourself if you’re proud of who you are…..💗💓💗💓💗💓
💗 ME!!!


Thank you very much, Amber, for sharing this inspiring post! There are many within the TBI community who likely appreciate, are inspired, and are encouraged by these words.