4 years old, Emotions, Fatigue, Voices from patients with TBI, Working through Trauma

The heroes around us.

How often during your day do you take time to reflect? On yourself? On those around you? On the communities, you are part of both at the micro and the macro level? On the ones you chose to be part of and the ones you didn’t?

I take time every day to reflect on who I am and my position in this world. Sometimes it takes a lot of time depending on the volume of exposures per day, whether the exposures are novel or not, or how complex the concept I am trying to wrap my head around appears to be or actually is.

And of course, I have to factor in my pain, energy, and functional ability levels… the one thing I occasionally feel is a very low-grade envy for individuals who do not need to put any effort into these considerations. They can push themselves beyond these elements – something I cannot do unless I want to suffer the consequences of more pain, more fatigue, and less ability to function. Sigh* The catch-22. I would like to do more sometimes, but if I do, ultimately I end up doing less overall because I have to recuperate from over-exertion.

Reflection helps me monitor myself in the three areas I mentioned. I’m always testing myself to see where my thresholds are and ways I can diminish or increase them when needed.

Sigh* Overall though, I wouldn’t really describe the occasional emotion I feel related to this concept as envy, but more as frustration. Being a person who has learned emotions from scratch,  I purposefully choose not to cultivate jealousy because of the incredible damage it can do. Frustration though is a feeling I have accepted as inherently part of my life. I understand that very, very, few exist in the space I do and therefore many cannot understand how it is possible for someone like me to operate in a world where a person like me is not naturally found.

Seriously, how many 4.5-year-old/26-year-olds out there are there??? Find me! Help them find me!

I’m nervous, I know a lot of people with memory conditions are frustrated or afraid, and I am there with you. Sometimes I forget how old my body is. Sometimes I look in the mirror and I am perplexed to see my “shell” is a full-grown Chinese lady. Sometimes my friends will ask me if I remember something and I earnestly do not. Sometimes I am just living my life and flashes from the past just come in spurts (PTSD). Sometimes I meet people twice because I cannot remember meeting them the first time. Sometimes I feel like a stranger to myself. Despite this and more, I try not to let this hold me back.

Even though I sometimes feel alienated or alone in this weird space where I fluctuate between being really abled and really disabled, where there is no sense of time, where memories are not guaranteed – I am grateful because I am not alone.

Those from the communities of people with cancer, HIV, lupus, autism, bone diseases, bipolar disorder, Alzheimer’s, and many other chronic conditions stood with me and taught me as I learned to cope with everything that comes with being sick for seemingly forever.

Those from the communities of individuals who are not part of the 117 million people with at least one chronic condition helped me”catch-up” from having lost so many years of memories. The genuinely kind and compassionate ones helped bring me into their space. They supported and included me when others did not.

These are my heroes because they saved me from being swallowed by despair. They help me stay strong even when I am not interacting with them often. They are helping me pave a path so that if anyone else enters the land of trauma or memory disorders, or any brain-related condition, there is a way out of the dark. 


About a month ago, a person I know decided to read this blog and called me to say, “Do you have a moment to talk?” I said yes, and they found me where I was situated. I was surprised to see them because I didn’t talk to them very much. They said, “I read your blog and I just want you to know you are not alone.”

This person evidently had gone through some similar experiences but did not divulge any details. They were proud of me for being open but recognized they would not be at a place to speak their truth for many years to come. I can understand that. Stigma has a way of burying one’s voice.

But earlier this past week, we reconnected and they shared with me how similar their experience was to mine. They did beg me not to tell anyone because of fear of how it would compromise their life. I can relate to that. When you have an invisible disability or condition – it is your choice to hide it. And I agree it is often easier to hide health issues than to have to explain it all the time. Even with some of my friend groups I never talk about it with them because I like having people who don’t “other” me and they just treat me like everyone else.

In all, I am incredibly impressed by this individual and told them they were my hero. I am glad to know that not only am I not alone in one of the spaces we share, but they know they are not alone either. I am grateful to all the individuals who tell me I inspire them because they inspire me. The inspired, inspire. 

With that being said, in the words of President John Quincy Adams:

“If your actions inspire others to dream more, learn more, do more and become more, you are a leader.”

Be a leader and inspire others to do what is right. Look around you, it may not be obvious, but there are many heroes who may not have revealed themselves yet. Be continuously and indiscriminately kind and then you will be a hero who may nurture future heroes to rise.

 

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4 years old, Emotions, Paying It Forward, Suicidal Ideation, Uncategorized, Voices from patients with TBI, Working through Trauma

Part 1: The Promise – Why I use my voice to stand against laws that do not help suicide prevention.

Every traumatic brain injury (TBI) survivor heals at a different rate, but I notice there are certain qualities or characteristics that lend themselves to a more rapid and higher quality healing process. In this post, I am going to refer to a promise I made in my third-year post-injury when I began to see the most progress in breaking out of what I call the “trauma-loop“.

To explain this loop in brief, I will share with you how it feels to write the type of post you are about to read.

Personally, I find these type of posts very difficult to write. I hate letting my trauma-self out because she is crippled by the fear of being stigmatized and misunderstood. This part of me is incredibly thin-skinned and unable to handle criticism or negative judgment. She is so sensitive, harder to control, and is the most vulnerable to being engulfed by hopelessness.

Being traumatized is such a weird condition (PTSD – chronic) or state to be in (acute). I find that when people with trauma are belittled for who they are, it only traumatizes them more, and makes it even more difficult to operate or want to participate in daily functions. Therefore, it comes as no surprise that individuals with trauma often stifle their feelings because it may not seem worth the risk to be open and honest about their pain.

The benefit of suppression is that it is a temporary coping mechanism that can turn into a long-term solution where one habitually becomes accustomed to and learns how to operate day-to-day with no disturbance. However, like a latent disease, the potential for future, insidious, or more diffuse harm is magnified. Regardless if someone chooses to be open or not about their trauma, they are at risk for being caught in an unpleasant and relentless loop, that over time may diminish their sensitivity to hope or compassion. This is why I personally decided to figure out how to free myself from its chains.

In another post, I can explain how I did this, but my hope for this post is that readers understand the importance of supportive, inclusive, compassionate, and kind communities. Part of the reason I was able to get out of the loop is because I started engaging with other people with chronic conditions and disabilities.

Before I likely viewed these groups of people as simply patients because it was an implicit bias that I was something else, a student pharmacist. The space I was operating in consisted of relatively healthy 20-something peers who luckily for them, but unfortunately for me, did not know what chronic suffering felt like.

The majority of new peers I introduced into my life were TBI survivors like myself, but there were also people with cancer, HIV, various mental health conditions, and more. Our common threads were in the symptoms we had and how our conditions affected our abilities to function and interact with others in our lives. When you wake up day after day being sick with no end in sight, feeling that the odds of healing are not necessarily in your favor and there is no certainty that you will get better- perhaps it’s easy to imagine why suicide rates are higher in certain populations with these factors.

For today, there is no need to get into the weeds of the behind-the-scenes torture I experienced when I wasn’t holding up my “normal” front for those around me. What I do want to share is a promise I made to my community because I am grateful for the time they invested to help me build perseverance, compassion, humility, patience, and purpose. They gave me a reason to always look for light and to be unafraid of the darkness if it were to disarm me.

I promised them, “I will not forget what you did for me and that wherever I go, I will find a way to take you with me. I promise I will try my hardest to use my voice when I am able.”

Feb. 8th, 2018 – Day 1681 (or 4.6 years from my mind reset): An action step was taken to fulfill this promise. I participated in the American Foundation for Suicide Prevention – Virginia Chapter’s first capitol day in Richmond, VA.

The evening after work of Wednesday, February 7th, I took the BoltBus down to Cary St. in Richmond. It was only about $17 one-way (half the price of a train!) and it was a nice trip. There were only two other passengers, so it was nice to have space and access to a plug for charging. I spent the majority of that time relaxing, listening to music, and reflecting on what I was doing. I reflected on the thing that caught my eye about attending capitol day, HB 42 to decriminalize suicide in the Commonwealth.

In Virginia, the act of suicide is considered a crime.

I was shocked because suicide is a result of someone dying from a mental health condition. Just like people die of heart disease, cancer, or infections, people can also die because of mental health. If someone died from any of the other causes listed, I don’t think many would feel comfortable calling those individuals criminals. Likewise, in most cases, death is final and the individual who died from suicide would not experience the consequences, rather their families and close ones would experience the salt thrown on the wound of grief. Moreover, having laws that criminalize a finalizing action related to a disease state doesn’t prevent it from happening and also stigmatizes having mental health challenges.

Is someone a criminal because they feel hopeless? No! I know this kind of person could benefit from continual and compassionate support, practicing a mindset of alternative options, and realizing their full potential.

This law did not sit right with me, and I decided, okay, even though I have not been a Virginia resident for a full year yet, it doesn’t matter. Wherever there are people suffering and lives are on the line, barriers to achieving relief must be removed. I don’t need to know you to stand up with you or for you. I would hope that even though you may not know me if you knew that I was hurting, you would help me hurt less.

For the post today, the piece I want to leave my readers with is that when we speak of suicide, it is best practice to say, “the person died of suicide” rather than “the person committed suicide.” People commit crimes, but people die of suicide. 

Let me know what you think – Do you know anyone who is trapped in the trauma loop and could benefit from some insight? Do you know anyone who has escaped, and how did they do it? Finally, what are your thoughts on suicide being a crime?

Later this week, look forward to more of the lessons I learned at Capitol Day. Thank you for reading.

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.

 

4 years old, Paying It Forward

The value of kindness is greater than gold.

Today I got pho with Anita* and Ollie*. Anita is from El Salvador and speaks wonderful Spanish. When I stay after hours to finish my work, the cleaning staff do an incredible job of making sure everything looks tidy for us the next day. I personally am not a huge fan of cleaning, so to me, what she does is a big deal. I recognize her and the other custodians because they do necessary work that is worthy of appreciation.

One day Anita was tidying up the kitchen. I said thank you in English and realized Spanish may be a better option. We started conversing in her native language and over some time she started sharing some really good food places…OKAY – going through my belly is immediate entry into my heart.

So today I got to have lunch at a place where her and her son frequent often. She looked extra beautiful, not just because she was dressed differently than her normal work attire, but she radiated happiness. Ollie is also very handsome, but especially his soul.

Anita said to me that she told her son there was a chica at work who was very amable. Who didn’t just “Hi, hello, how are you?”, but would stop to chat in Spanish which she really liked.

Hmmm, I’ve been in situations where I have really appreciated when others took the time to get to know me beyond surface level. Personally, that helped me practice being more vulnerable, but more importantly, it encouraged me to thrive.

For me, encouraging kindness and empowerment is extremely important. I am very aware of how these attributes allowed me to be in the position I am in today, and I am always incredibly grateful. It is pretty busy in DC, so one-on-one thank yous for being my friend and being nice is a little tough to swing, but don’t worry, I still practice what others gave me by giving it to others…which I believe they probably appreciate too.

After all, the value of kindness is greater than gold.

 

*Names changed.