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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.

Along For The Ride

Where is your head at?

This week, we are going to touch on the type of mindset we have as individuals, more specifically- a growth mindset vs. a fixed mindset.

Where is your head at? I have been stuck many times in a fixed mindset, giving in to the thought that my life circumstances were already determined and I had no way of deviating from this prescribed path. Let me digress and explain what a fixed mindset and a growth mindset are. According to the Positive Psychology Program, a fixed mindset is focused on validating oneself. A person tries to prove themselves but is very sensative about being wrong or making mistakes. This leads to doubting themselves which destroys confidence. A fixed mindset to me is like being stuck in a traffic jam by choice when there are innumerable opportunities to take an exit.

A growth mindset “is about achieving mastery and competence. The person believes that superb personal qualities can be learned developed or cultivated.” The important thing here is that failure is viewed as an opportunity to learn and grow. You hear the saying that you learn more from losing than winning and this is so true to me. The opportunity to look at what you did wrong that led to failure and the ability to adjust a find new strategies is so important for overall growth.

The big thing here is a fixed mindset is limiting on your potential because you believe there is a limit to how well you can do. A limit to how intelligent you can become, or how successful or how anything else. A growth mindset gives you unlimited potential because you believe that its there.

Think about where your head is at and what type of mindset you have. Is it fixed? Is it growth? Try to take control and be confident in yourself. If you find it hard, find someone that inspires you. I was stuck in a rut until I met Jing. She is one of the most inspiring people I have ever met and has shown me that regardless of circumstances, there is still a chance to grow. If you cannot do it on your own, find someone who can help encourage you. Whether it’s your mom, your dad, a sibling, or even someone at work.

“It does not matter how slowly you go so long as you do not stop” -Confucious 

Emotions

Thoughts on Being Overwhelmed

In today’s society, it seems that many of us feel overwhelmed at some point in life. This can be from work, school, moving, and many other things. Over time, if we are always living in this state, it could potentially lead to chronic stress and or major health issues. The question now is how do we live with it if we are unable to escape the stress of everyday life. More importantly, what are some things we can do as humans to help alleviate the stress and not being so overwhelmed?

One quote that sticks with me is from Timber Hawkeye, “you can’t calm the storm, so stop trying. What you can do is calm yourself. The storm will pass”. With so much happening in our lives, it is vital that we find time for ourselves and know that we are not alone. Find a way to relax and de-stress. Look for an activity you enjoy doing or try discovering a new one that you’ve been wanting to do.

What helps me get through the tough times of being overwhelmed are things like exercising, talking with someone, cleaning, napping, and deep breathing. It is our jobs to find a couple of things that will help cope being overwhelmed. If things don’t get better, it is important to reach out to someone and ask for help. Through the thick of it all, know that you have a purpose in life. Keep that in mind to help you keep moving forward in life.

Lastly, make sure to surround yourself with successful people in your life and career. These people will always be there for you through the good times and bad times. Also, know that there are some days that are better than others. If you are having a bad day, leave that all behind. The trick is to find a way to reset quickly so you can have time to get back to a place of some control. If we can keep these points and steps in mind, life can be happier and less stressful.

Along For The Ride, Uncategorized

What does privilege mean?

The theme for posts this week will focus on privilege and what that means to us as individuals but also as parts of larger communities.

It’s when I look past the difficulties I have spelling the word that I can see the impact the word has in my life along with everyone else. I think what many people think now when they think of privilege (thanks again, Grammarly) is white privilege. First, let’s look at what privilege actually means. The Merriam-Webster dictionary defines privilege as “a right or immunity granted as a peculiar benefit, advantage, or favor”. (side note, privilege was in the top 1% of definition searches on the website. Hmmm…) One step further, the definition of White privilege according to Dr. Francis Kendall, who works as a consultant for organizational change focusing specifically on diversity and white privilege, is ” an institutional (rather than personal) set of benefits granted to those of us who, by race, resemble the people who dominate the powerful positions in our institutions. I understand fully that I am in a very privileged position. I also understand knowing that I am in a privileged position, it is my obligation to use that privilege in order to better the world for everyone, not just the privileged.

Privilege is often broken down and compared between ethnicities and then also gender. One place that is not always looked at is the differences between being able and disabled. Disabled is a very broad term in regards to what it refers to. Being disabled means that you are limited in some way because of a physical or mental condition. This can cut across so many different areas of someone’s life. I personally have not felt marginalized because of my color, gender, or abilities, but I have seen it happen to people I really care about.

This is the important idea that I want to get across and communicate with others, Just because I do not personally feel marginalized does not mean I shouldn’t get involved. Too often I feel that others are complacent with circumstances that don’t directly impact them. The point is, you have a heart, listen to it, it will tell you whats right. You have a voice. Use it, to help others who may not know understand. I put forth the importance of living each day knowing that it can be better than yesterday, for yourself but also for others around you.

I will leave you with a quote that I have read many times to start my day and remind me of what I can do:

“Never be complacent about the current steps; don’t agree and follow the status quo. Be determined that you are making an indelible impact with great change. Now, dress up and go to make it happen!” – Isrealmore Ayivor