One woman’s struggle with ACEs and CPTSD
By Nicole Heffelfinger
I was born the second of two children to normal working class parents in their early twenties. My parents divorced when I was only nine months old, but they always maintained respect and civility with each other, which is much more than many children of divorce can say. It is important I note here that my parents were hard-working, dedicated parents who did their own work to overcome their own generational cycles of trauma that they inherited—I know that they did their best and provided for me in many ways that I will not mention here. They are far from the stereotypes that my story may invoke, and this story is more about my experience than about their actions.
My story begins not much differently than those I see in our community. I want to share my story not to be seen myself, but rather to give encouragement to those who may not have found their voice yet.
For the most part, I always had at least one parent who had a steady job and a safe enough home I could go between, and I didn’t go entirely hungry or unclothed, much due to the support of a lot of friends, family, community members, and organizations. I was an otherwise clean, intelligent, silly kid who made friends easily and brought light to the room. Academics came easily for me, and I doubt I ever missed the honor roll. I had good attendance, and I probably didn’t generally raise any red flags. In high school, I excelled, even when I started working a part-time job regularly to better support myself at age 14 for simple things like school clothes or the ability to participate on sports teams, where I found myself receiving leadership awards.
Both my parents moved out of my home and to another town while I finished my senior year living essentially by myself, with them checking in occasionally; I was between 16 and 17 years old. While my father was able to provide me with the luxury of a simple car and basic insurance, and the independence in and of itself wasn’t terrible, it certainly came at the expense of being very self-sufficient at a young age. I was attending college full time—on the dean’s list and accepted into an honor’s society—and working two jobs by the age of 17. I was self determined enough to arrange to study abroad at the age of 19 and surprised everyone when I booked my flight to Spain.
All in all, my issues probably weren’t readily apparent to those around me during my adolescence.
What you wouldn’t have seen from the outside is that I experienced mild physical abuse, verbal and emotional abuse, emotional neglect, a parent diagnosed with a mental illness, parents and multiple family members with various addictions, an incarcerated parent, and pervasive domestic abuse, including gun violence. Moreover, I lost multiple step-parents via divorce and four classmates—one a family member—due to separate tragic deaths between 9th and 10th grades.
My hope is that there are at least a handful of readers who recognize these as a bulk of the 10 Adverse Childhood Experiences (ACEs), as defined by the Centers for Disease Control.
“Adverse Childhood Experiences (ACEs) are potentially traumatic events that occur in childhood. ACEs can include violence, abuse, and growing up in a family with mental health or substance use problems. Toxic stress from ACEs can change brain development and affect how the body responds to stress. ACEs are linked to chronic health problems, mental illness, and substance misuse in adulthood.”
To elaborate on these adversities, I experienced four of five divorces by the end of elementary school; I lived in at least six different homes by 8th grade, and at least 25 homes total by age 30; I attended four different school districts, three of them by 3rd grade. I first experienced and have record of suicide ideation at age eight, and again at age 14, when I first sought medical care and was simply sent home, because I wasn’t “suicidal enough.”
Additionally, my family routinely experienced food insecurity. I was severely bullied by a large group of students, which was—in a way—supported and exacerbated by school administration. I had caretaking responsibilities for three younger siblings who were, for a brief period, homeless when I was about 14 or 15. I suffered the loss of a new sibling who was given up for adoption, due to said homelessness. Shortly after, my mother and younger siblings were the recipients of a Habitat for Humanity home, which offered a form of relief.
I experienced these adversities, among others—in varying degrees of intensity and duration, most often multiple being experienced simultaneously—until I reached autonomy at age 17.
By this time, I was completely aware that I was experiencing mental health issues, but having a growth mindset, I was always actively seeking knowledge and support, looking for how to move forward. After years of reflection on where this drive came from, I now see that I owe it to the influence of my grandparents, with whom I spent a lot of time and who served as my first mentors and positive adult figures.
Around this time, I had begun having what I’ll refer to as “episodes” that prompted me to seek mental health support. While this served as a tremendous intervention for me, I was also misdiagnosed and subsequently mis-medicated for a couple of years, leaving me with nothing more than a better awareness that my circumstances were, in fact, not “normal” and a few years of significant struggle trying to re-group.
Nonetheless, I persisted and learned that these adversities had left me with some professional gifts.
My work ethic was top notch, I was incredibly resourceful and self-directed, I always saw opportunities for improvement, and I took initiative to implement these changes. My internal desire to experience safety, security, and predictability proved a valuable asset when working within leadership teams to develop, train, and implement policies and procedures or to clarify an employer’s mission and values. The necessity for me to share my calm with my siblings in the midst of chaos in our childhood grew into brave leadership skills that I’ve taken onto the teams I’ve been fortunate enough to lead. I stumbled upon an unsuspecting professional mentor, Mike Neill, who guided me through this time, until I accepted my first promotion at age 24 and relocated to Traverse City.
In Northern Michigan, I found space and reprieve from my past, and I was able to dive into new interests and found myself training in tae kwon do. I cultivated confidence and a sense of safety and—more importantly—a community that supported me as I worked toward my black belt, which I ultimately earned.
At this time, I also met my now-husband and was welcomed into the safe haven of his family, for whom no amount of words can express my gratitude. I was already experiencing symptoms of burnout and chronic stress at this age in my mid-twenties, and I wanted a change, so I again sought mental health support. This was the first time that I was treated for post-traumatic stress disorder (PTSD), but even then, healing was never presented as an option, and I couldn’t really comprehend what that diagnosis meant—I thought that I was just “broken” and needed to work harder to fix myself.
Eventually, my familiarity with poverty and adversity—and the resilience that I subsequently developed from these—gave me the confidence to make an outlandish and risky life choice: my significant other (now-husband) and I moved to Brazil shortly after I turned 28. This was a country I had never visited, and I didn’t even speak the language.
After our move to Brazil, I had decided that I wanted to work in some capacity where I could help others to facilitate personal growth. I spent a fair amount of time supporting a Brazilian Jiu Jitsu social project called Terere’s Kid Project, run by a close friend, which affirmed my desire to work with vulnerable youth. Upon my return to the United States three years later, this evolved into working with youth development, in the out-of-school-time field: in other words, extracurriculars, after-school programs, etc.
There were many ways in which my life was flourishing by my early thirties, but I continued to have this pattern of behavior and recurring episodes of depression and anxiety that, over the years, became increasingly intense and frequent, even with the support of a therapist. But—as I was led to believe through the medical care that I had received thus far—that was simply life with mental health issues, and my only option was to endlessly cope.
My career in youth development grew alongside me, and through my work supporting vulnerable youth, I found some degree of peace with my past—yet I continued to struggle mentally. I poured myself into work, dedicating myself to creating safe, trauma-informed spaces for youth and developing mentorship opportunities, telling myself that this was how I could manifest something positive from my childhood and tell my story in a more empowering light.
Around the age of 33, imagine my surprise as I sat in a professional development training in Oregon with 60 of my peers and first learned about Adverse Childhood Experiences (ACEs.) My mouth agape at the fact that I could effortlessly check off nine out of 10 ACEs, it was in that moment I realized that I was, in fact, not “broken” or hopelessly dysfunctional, but my mental health experience was entirely predictable, based on the ACEs study. This opened up a new level of awareness for me and a new perspective from which to view myself.
In many ways, I was succeeding in my efforts to overcome my trauma, but I had failed to recognize how triggering my career was.
I found myself hitting my third burnout wall and relocating my young family back to Northern Michigan to find safety and security—which seemed quite paradoxical to me at the time. Failing to listen to my deepest inner knowledge and simply rest, I stumbled into a demanding director position in the same field for an almost identical non-profit. I had landed in a uniquely supportive workplace culture, but it still wasn’t long until I again started experiencing the physical effects of my adversity, trauma, and chronic stress.
I had hit the “burnout” wall again, for a fourth time, like a Mac truck, right after the birth of my second child and right before the onset of the pandemic. My body was screaming at me that something needed to change, but I pushed through the pandemic sharing the little calm I had left with my team, knowing my program served hundreds of youth that now needed our support more than ever—but, as the saying goes, you can’t give from an empty cup.
With all of the information in front of me, I had to finally admit that I was in the midst of a mental health crisis.
As silly as it seems, although I had been treated for PTSD in the past, I didn’t quite apply the diagnosis to my life. While I was having traditional markers of PTSD, I certainly diminished my experiences, because the adversity and traumas that I had experienced seemed inconsequential on the grand spectrum of traumas that are experienced by others. I also struggled so much more with the criteria that made my PTSD complicated that I doubted the diagnosis for some time. My diagnosis was also more than 10 years ago, when the language and culture around mental health was more abysmal than it is now—there was no information or resources that came along with the diagnosis, and it was only through my personal growth journey that I learned of CPTSD and came to understand that’s what I was experiencing: complex post-traumatic stress disorder.
That “c” may seem like a minor change, but let’s talk about what makes it complex:
“Complex post-traumatic stress disorder (Complex PTSD) is a disorder that may develop following exposure to an event or series of events of an extreme and prolonged or repetitive nature that is experienced as extremely threatening or horrific and from which escape is difficult or impossible (e.g. torture, slavery, genocide campaigns, prolonged domestic violence, repeated childhood sexual or physical abuse). The disorder is characterized by the core symptoms of PTSD; that is, all diagnostic requirements for PTSD have been met at some point during the course of the disorder. Those diagnostic criteria are 1) a persistent sense of threat, e.g. hypervigilance and being easily startled; 2) avoiding reminders of the traumas; and 3) re-experiencing or reliving the traumas; for example, flashbacks and intrusive thoughts about the trauma.
“…In addition, Complex PTSD is characterized by 1) severe and pervasive problems in affect regulation; 2) persistent beliefs about oneself as diminished, defeated, or worthless, accompanied by deep and pervasive feelings of shame, guilt, or failure related to the stressor; and 3) persistent difficulties in sustaining relationships and in feeling close to others. The disturbance causes significant impairment in personal, family, social, educational, occupational, or other important areas of functioning.” (Read more at TraumaDissociation.com online.)
The way that I like to describe my experience to others, in comparison to more commonly understood PTSD, is that with CPTSD, there is no “before” or “after”—there just never was.
I never experienced a healthy childhood “before,” with a traumatic disruption, and a notably different “after.” Rather, I just never experienced what a healthy baseline was, and it took me decades to realize that my point of reference was off. I can rarely recall experiencing safety or security in my home, and I have more anecdotes about times when I feared for my life than I can count. I don’t necessarily recall healthy attachments, emotional attunement, or even co-regulation—all of the foundational building blocks that allow humans to experience connection, intimacy, community, and even joy. I suppose there are blips of tenderness from my parents, and these elements surely must have been present somewhere at sometime, but the traumatic parts of my experience that aren’t integrated simply overshadow them.
In short, the story that I tell myself is that this makes me comes across as an incredibly socially awkward person with severe personality flaws—I walk through the world as if someone is always around the corner ready to jump out and hurt everyone around me, and I feel like I’m the one that’s responsible for everyone’s well-being when things go sideways.
My triggers don’t always produce intense flashbacks and dissociation, but more often come as strong physical sensations of being unsafe. I experience severe anxiety around transitions, new places, meeting new people, engaging in conversation, and what expectations and boundaries are. I experience a constant high emotional charge and extreme challenges to be present or relaxed in the moment. It’s hard for me to be present in conversation and provide a response versus a reaction, or to attend a community event and simply listen to the music, because I am constantly scanning for threats and making contingency plans. It’s often difficult to even recall what I spoke to people about afterward, which can make me feel like a really cruddy friend at times.
Furthermore, when my nervous system is over capacity I experience abrupt irritability and anger, I say really stupid stuff that is out of alignment with my truest self, I have persistent insomnia, and my cognitive function rapidly declines. I have a hard time simply eating and nourishing my body, I believe because I spend so much time in a sympathetic “flight” response—instead of my parasympathetic rest and digest—and my body is too nervous to eat.
My CPTSD gives me a rollercoaster of physical sensations daily, and it’s exhausting.
I feel the rapid heart rate, shortening or holding of breath, tensing of muscles, heightened arousal and fear, clenching of jaw, and more over the simplest things. When I am in a crisis, this can happen to me multiple times a day and leaves me feeling like I just competed in the crossfit games and Ninja Warrior trials back to back.
I simply cannot emphasize enough how much of a physical experience CPTSD actually is.
About two years ago, when I was finally able to accept and understand what I was experiencing, I had to make the difficult decision to step aside from my career and focus on healing. At the time, I had two terminally ill family members, one being my step-mother with a shared history of trauma. Because of the ACEs study, I knew that I was on a similar trajectory of increased negative health outcomes. I was scared and knew I needed to allow myself to rest and recover, so that I could be here with my husband and children until old age.
This simple act of surrender opened up an entirely new pathway of information for me.
Through working on adrenal fatigue, I started to learn more about my autonomic nervous system, which led me to discovering the polyvagal theory and somatic experiencing—essentially working out trauma energy that has been trapped in the body through mind-body exercises like breathwork, meditation, visualization, dance, etc. The book The Body Keeps the Score by Dr. Bessel van der Kolk gave me the education about what was happening neurologically and in my body, along with decades of trauma research and how to heal. (I typically recommend this book with a high trigger warning.)
Big reveal: some of the most effective tools to my healing have included breathing, yoga, arts, music, theater, and dancing.
After realizing I have been so scared that I have been literally holding my breath my entire life, I sought out physical therapy to learn how to properly breathe, so that I could better regulate my nervous system, which in and of itself has changed my life. I started dancing and singing in my yard more, playing more with my kids, spending more intentional time in nature, and exploring what rest meant to me—turns out, being hugged by my hammock is my favorite thing.
I also invested in three inexpensive local retreats during the summer that followed the departure of my job and several sessions with a somatic experiencing practitioner, which we are fortunate to have in our area of the state. I also found incredible support from local chiropractor Dr. Emily [Nugent] Eilers in Frankfort and from holistic transformative coach Sarah Louisignau.
Lastly, I invested in a trauma-informed yoga teacher training, a program in which I am currently enrolled, knowing that it would provide a structured and supportive environment for me to explore what it meant to experience safety in my body, and I would learn a skill in the process.
Through all of the years that I was aware of my mental health issues and was actively seeking support and learning, the most difficult concept for me to understand was that trauma is something that happens to your body—it’s a physical injury to your brain that can be measured. As such, it’s not in my mind; I cannot think or rationalize myself through it or away from it, and until I addressed it on the physical layer of my body, it wasn’t going anywhere, and I wouldn’t heal.
As the saying goes, my issues are in my tissues.
For me, this simple change in perspective opened a pathway to healing for me that I have been actively seeking for over half of my life. Since this change, I have been experiencing a gradual unraveling of sorts—finding healing in unexpected places.
Last year, the stories that arose about mental health in our community—in part fueled by the special September issue of The Betsie Current in 2021—comforted me and brought me hope. My nervous system capacity is slowly returning, and I have learned what it means to feel a sense of ease, sprinkled with pleasure and joy at times. I still have to be really attentive to how much stimulus I take in, and I begrudgingly carry ear plugs in my purse and have to spend the majority of my time in public focusing on self-regulation, but I am much more able to stay with myself in those moments, instead of dissociating or having anger outbursts.
As I’m healing, I feel some lights turning back on in my brain, like neural connections are alive again. Sometimes my face actually hurts from smiling too much when I play with my kids. I don’t understand all of my triggers yet, and sometimes I get blindsided by a completely obscure event that annihilates my nervous system and requires a lot of rest afterward, but every day I am learning, growing, and healing. After all of these years doing “the work,” I am finally experiencing these beautiful ways to care for, love, honor, and be in relationship with myself and others. I’m well aware that I’m still a toddler stumbling along on this healing journey, but for now, I choose to savor and appreciate the wildly adventurous, love-filled, abundant life that I have.
The biggest challenges that I now face are how CPTSD impacts my journey of motherhood and my economic opportunities. I’m very cognizant of how my mental health impacts my children’s development—ages three and five—and I have to be incredibly intentional with how I parent and model behaviors, including repairing any damage that may be done to our mother-child relationship because of an episode that they might witness.
It’s hard teaching my children co-regulation skills when I’m just learning them myself, or seeing my children being confused about why Mommy has such big emotions and cries so much. In these moments, I try to give myself grace in the fact that I have—thus far—broken my family’s cycle of generational trauma.
Likewise, I give myself grace when thinking about how I had to step aside from a career where I was positioned to positively influence hundreds of young people’s lives and to create the mentorship opportunities that the youth in our Northern Michigan communities desperately need. Aside from losing purpose and essential income, being a stay-at-home mom is hard, especially in a rural area where it’s easy to become isolated. Some days, it’s easy for me to have feel labeled, discarded, and without value from society, and—although I feel like I have so, so much more to give—it’s also easy to feel that my talents aren’t wanted or aren’t useful, because I need a few simple accommodations, clear expectations and boundaries, and trustworthy leadership that, sadly, do not always exist in the work environment.
There are plenty of positives, too, though. I’m thrilled to see so many conversations about mental health occurring in our area. Until the last year or so, it seemed that I was usually the lone voice in the room, nervously talking about my experience to highlight the outcomes that we work to prevent in the youth development field. I’m typically met with enough support, but certainly not a genuine sense of understanding—which is fair enough.
I’ll share a recent anecdote to sum up my experience and distaste for the culture I have often experienced in Michigan, and that I’m glad to see changing: I recently had a simple medical procedure that was, in my opinion, unnecessarily distressing and left me in a useless state of dissociation for nearly two days. When I asked my doctor afterward how to better advocate for trauma-informed care for future procedures, my doctor—whom I usually feel very supported by—looked at me quizzically and turned to their computer to Google what I meant by “trauma-informed care.”
Our youth are experiencing ACEs at an alarming rate, alongside the recent cut in funding to our local Child Advocacy Center. I find that we still sweep ACES under the rug as a “normal part of growing up” and fail to recognize the long-term impacts for the individual, their involvement in the workforce once they reach autonomy, and for society as a whole.
People fail to recognize that those adversities turn into resilience when you have the support and skills to process and integrate those experiences into your life, and many people are missing that vital piece. The message that I needed to hear the most when struggling with my mental health was that healing is an option.
I hope that this essay reminds readers that you are tremendously more powerful and capable in your ability to facilitate your healing than our Western medical institutions would sometimes have you believe—and that you are certainly never alone. I would invite you to welcome curiosity around your breath and autonomic nervous system, as I’ve found it is a great reference point to enter into dialogue with yourself about what you may be experiencing. Lastly, I would remind folks that we are also blessed with professionals who offer a variety of healing methodologies in our area, many who offer sliding scale services and are working wonders in our community. Don’t be afraid to seek them out and prioritize the investment in yourself, as it is money well spent and perhaps the best investment in your future that you can make.
To the youth in our community who are experiencing adversity right now—I see you.
This wildly adventurous, love-filled, abundant life that my adversity led me to is waiting for you, too. My high school Psychology teacher always encouraged me, “Inch by inch is a cinch, yard by yard is too hard.” So have courage, and move forward one breath at a time. I believe in you.
Featured Photo Caption: For the most part, Nicole Heffelfinger always had at least one parent who had a steady job and a safe enough home, and she did not go entirely hungry or unclothed. She was an otherwise clean, intelligent, silly kid who made friends easily and brought light to the room. Academics came easily for her, and she never missed the honor roll. She had good attendance, and she probably did not generally raise any red flags. However, she had Adverse Childhood Experiences which have contributed to her CPTSD diagnosis as an adult. Photo courtesy of Nicole Heffelfinger.