Gratitude, Patient Support Voice, Trauma Voice

TBI Awareness Day: A story of exposure and learning from a first time supporter.

To be honest, I never thought I would be in this position. Never thought I would be a part of the TBI community but I am incredibly grateful that I am. A couple of years ago, I honestly didn’t know much about TBI. Nothing more than surface knowledge that you may hear on the news or read in the paper about some prominent figure getting into an accident and having a traumatic brain injury.

When I met Jing, it was my first real experience and personal connection to TBI. She told me up front, but I still did not truly understand what it meant to have suffered a brain injury. I didn’t know what came along with it, and what it did to the person who experienced it.

I remember it was a slow process, Jing was very protective of the TBI community and I understand why now. It is a very misunderstood community, one that is the epitome of unseen illness. Learning to be a supporter was not always easy, or graceful (I was not the best at it initially). I still have room to grow in this role, I still have plenty to learn. I look at this as an opportunity to maintain a growth mindset though, as there is always room for improvement.

I can remember the first support group meeting which I attended. I remember the warnings I got from the protective momma-bear that is is Jing about how I had better watch what I say and understand that this was a huge trust exercise for her and the other members of the group. I was a bit worried because I did not know what to expect. I am so thankful that I had had the opportunity to meet the members of this support group. I learned how many of the member’s accidents changed their paths and remain a source of pain and sorrow, but also how individuals work through what life has given them.

These group members suffer from things like depression, anxiety, PTSD, sleeping problems, aches and pains, memory problems. They have lost full use of many of their senses and have a hard time forming and maintaining relationships in their personal lives. Every person of this group has their own story, but they also share a lot of the same truths.

I was nervous a bit in that first meeting. I was worried I would make someone feel uncomfortable or I would not be welcomed. I was very wrong on this point. Being in the meeting I felt like I was part of a family. A family that was open and unfiltered, needless to say, I felt more than welcome.

What I noticed most was the way that each member was supportive of everyone else in the group. They were there to give support but also realistic advice, they were there to give as much as they were there to gain. They were able to use their own truths and circumstances to try to help other members. All the while throwing jokes around the room. It was nice to see that a sense of humor was able to persevere!

What I was able to take away from that meeting was the strong sense of community that I experienced in that room. Every individual with their own circumstances, collectively working to build a place that others and themselves could feel comfortable and supported. This is what we at The MindReset hope to recreate on a larger scale and involving more than just the TBI community.


“Unity is strength… when there is teamwork and collaboration, wonderful things can be achieved.” 

-Mattie J.T. Stepanek


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Please do not hesitate to reach out to the MindReset community.

The MindReset is a community of individuals who seek to inspire a social movement geared toward creating a more Supportive, Inclusive, Compassionate, and Kind society where anyone and everyone has the opportunity to thrive.

  • Facebook: https://www.facebook.com/theMindReset/
  • Instagram: @The_MindReset
  • Twitter: themindreset
  • #TheMindReset #TMR #SICK
  • e-mail: themindreset@gmail.com

 

 

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Emotions, Feel Good, Gratitude, Patient Support Voice, Paying It Forward

The Communities We Build

The narrative for young men growing up has been so clear- an unabashed sense of the need to be strong and unpenetrable. As far away from being perceived as weak as is possible. This is the narrative I also grew up with, and it is reinforced so often by not just parents but also peer relations and the social constructs that surround us in each and every moment. I point this out because this narrative has led to the community expectations that we battle with today: If you are a man, you should show no weakness, talking about your feelings is weak- don’t do it. 

This narrative does nothing but propagates the idea that if we do have feelings or emotions, we need to hide them for fear of being found out and excluded or othered. This is something that contributes to the stigmatization of mental illness. One of our main goals at The MindReset is to help de-stigmatize mental illness and help individuals know there is a place that is welcoming and will support them even if they are not strong or brave enough to find a voice to open up. 

Something really great has happened in the last couple of weeks in the sports world- typically a place that exemplifies the hyper-masculine narrative. Multiple high profile NBA players and all-stars, Demar DeRozan and Kevin Love, both came out about their own mental health struggles. This is so very important to help de-stigmatize mental health as they have very large platforms and also contradict the stereotypical narrative of an athlete. It was not easy for them, just like it is not easy for others who live with mental illness. 

A really important aspect of mental illness is that for some, they may be completely blind to it. Part of the reason for this could be that they may not have been taught or ever learned how to be reflective and more aware of themselves. Someone might know something is off, but not know what it is and if they are in an environment that discourages talking about feelings and emotions, they are likely not going to seek support or answers. 


“I realized how many issues come from places that you may not realize until you really look into them. I think it’s easy to assume we know ourselves, but once you peel back the layers it’s amazing how much there is to still discover.” – Kevin Love 


 

This gets to the point of being mindful and really trying to understand yourself. The big picture here though is that peeling back these layers is something that you may need help with. This is why it is so important to build communities that are welcoming and understanding- communities which are inclusive.

The MindReset is a place where we want to open those conversations and work towards rethinking the way we live by creating more supportive, inclusive, compassionate, and kind communities. 

I’ll leave you with a quote that speaks to me on so many levels and hopefully does the same for you:


“We need to give each other the space to grow, to be ourselves, to exercise our diversity. We need to give each other space so that we may both give and receive such beautiful things as ideas, openness, dignity, joy, healing, and inclusion.”

— Max de Pree

Emotions, Feel Good, Gratitude, Patient Support Voice

Layers of Support

It is interesting as I think about times in my life that I have struggled. Times that have been overwhelmed to the point that I felt as if I had no way out. It is also interesting to look at the different pieces that led me to feel that way, but also all of the contributions from others that allowed me to break free of my struggle and move on.

I have learned that most problems, mine included, are not simple ones. There is more to them than meets the eye. To each problem, there are layers to it. Each layer contributes something different and impacts you in a different way. The same can be said about the support you receive from others around you.

When I look at supports, first I think about the supports that are closest to you. According to ecological systems theory, this is your individual microsystem.  These are supports from your significant other, your peers, your family, along with other environments that have a lot of impact in your life like church, school, or work. Support from these individuals is in a way a comfort blanket, those the closest to you are typically your most supportive figures when you are going through something or life changes in unexpected ways. These are typically the people you can count on the most.

Your personal microsystem is incredibly important to help for some individual needs, but what in my mind is more important for all of us is for the larger systems that surround us to be just as supportive as our microsystem.

This is the true mission of TheMindReset- Rethinking the way we live to create more supportive, inclusive, compassionate, and kind communities. 

As we expand away from our microsystems, larger group dynamics come into play. Looking specifically at our Exosystem- which is characterized by links between social settings that you as an individual do not have an active role in, and our Macrosystem- which is the culture that we live in, this is where work needs to be done.

Like I mentioned earlier, this is part of the mission of TheMindReset- to change the narrative for those that struggle to one where everyone has the opportunity to thrive.

Noone should be forgotten or left behind. With that I will leave you with one of my favorite quotes:

“We cannot seek achievement for ourselves and forget about progress and prosperity for our community… Our ambitions must be broad enough to include the aspirations and needs of others, for their sakes and for our own.”  -Cesar Chavez

 


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Please do not hesitate to reach out to the MindReset community.

The MindReset is a community of individuals who seek to inspire a social movement geared toward creating a more Supportive, Inclusive, Compassionate, and Kind society where anyone and everyone has the opportunity to thrive.

  • Facebook: https://www.facebook.com/theMindReset/
  • Instagram: @The_MindReset
  • Twitter: themindreset
  • #TheMindReset #TMR #SICK
  • e-mail: themindreset@gmail.com

 

4 years old, Emotions, Feel Good, Gratitude, Trauma Voice

Gratitude and tears.

Sometimes I am disappointed in myself when I am unable to control tears from welling in my eyes. But this exact thing happened when I met the benefactors of my residency program on the eighth day after I started my position as the APhA Foundation Executive Resident in Association Management and Leadership. Near the end of our visit that day, the recent past-resident and I were asked to share our stories about what drew us to the position. When it was my turn, as I was stating my purpose, I suddenly became overwhelmed with emotion and began to tear up. I was baffled as it was happening. Why did I react that way?

I remember the evening after that trip, I reflected on why that profound experience happened. At first, I thought it was because I was a person with deeply-rooted trauma and perhaps I did not have as much control over my panic as I thought I did.

I think I was afraid because what motivated me to apply for the executive residency had a lot to do with my identity as a traumatic brain injury (TBI) survivor. I understand how important it is for patients to be included in conversations about how their health is provided and I wanted to use my unique position as an individual who understands the pharmacist and patient perspectives equally well to improve how pharmacists services are delivered.  Nonetheless, like many in the TBI community, we know how stigmatized our condition is. It is not uncommon for people’s faces to curl with discomfort when we say who we are, whether they mean to intentionally or not.

However, as much weight fear may have held in factoring into my tears, that conclusion didn’t seem to entirely make sense to me. As I thought a little deeper, I had an epiphany for another possible reason why I might cry other than when I feel afraid, upset, sad, or overjoyed with laughter…

I realized I cry when I feel overwhelmingly grateful

On June 28, 2017, I cried in front of some of the most well-known and respected figures in pharmacy because of how grateful I felt for the potential their endowment afforded me.

Being the APhA Foundation Executive Resident means a lot to not only myself, but to the people I represent. Being able to graduate with a pharmacy degree at the same time as my peers, and to be selected as one of the few individuals with an opportunity to be mentored by some of the greatest leaders in my profession is more than I, or anyone else, could have imagined possible. I find it an incredible honor to be in a position to provide hope to people who really need it, like my peers who also survived severe traumatic brain injuries.

By having interactions with dozens of individuals with varying levels of brain damage, I know those with TBI don’t often have the same privileges or abilities that those without TBI have, let alone those with retrograde amnesia like myself. I remember thinking at the time:

“How ironic it is the Knowlton’s not only own a business called Tabula Rasa Healthcare, which means ‘blank slate’ in Latin, but they fund an experience for a person who’s mind was tabula rasa less than four years prior to when they met her.”

Since that memorable experience in late June of last summer, I have continued to grow exponentially to get closer to reaching my main goal: to create safe and sustainable communities of mutual understanding where quality of life is attainable for all.

From the first half of my residency when I was acclimating to an entirely different landscape, interacting with personality types I never encountered, being forced to develop new skills quickly, and becoming the most independent I’d ever been since the day I woke up in the neuro-ICU, I noticed I have come a long way. In the beginning, I was really intimidated to be surrounded by all the leaders around me who sometimes made me feel like I had to be just like everyone else because that is what everyone else is comfortable with.

However, the moment I began to fully embrace all parts of my identity in a setting where I understand a large part of me is in a place where it usually does not belong, is when my soul began to suffer less. After I realized I am a disrupter simply by the nature of who I am and what I accomplished, and then accepted what that type of person might have to face, is when I started becoming stronger and more confident.

I have purpose. I have passion. And I have people who need someone like me to stand up for us.

Not in 100 years could I have imagined that my life would end and begin again as a TBI survivor, pharmacist, and public health specialist. I thank all those in my community of pharmacists, patients, and just people for helping me get to where I am today. Whether I cry about it or not, I am in a position where I feel grateful day in and day out. What has been done for me, I will return two-fold for the rest of my life.


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Please do not hesitate to reach out to the MindReset community.

The MindReset is a community of individuals who seek to inspire a social movement geared toward creating a more Supportive, Inclusive, Compassionate, and Kind society where anyone and everyone has the opportunity to thrive.

  • Facebook: https://www.facebook.com/theMindReset/
  • Instagram: @The_MindReset
  • Twitter: themindreset
  • #TheMindReset #TMR #SICK
  • e-mail: themindreset@gmail.com
Brain Injury Voice, Gratitude, Suicidal Ideation

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}


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Please do not hesitate to reach out to the MindReset community.

The MindReset is a community of individuals who seek to inspire a social movement geared toward creating a more Supportive, Inclusive, Compassionate, and Kind society where anyone and everyone has the opportunity to thrive.

  • Facebook: https://www.facebook.com/theMindReset/
  • Instagram: @The_MindReset
  • Twitter: themindreset
  • #TheMindReset #TMR #SICK
  • e-mail: themindreset@gmail.com